tag:blogger.com,1999:blog-80441769009697592592024-02-21T10:18:57.834-07:00Stay at Home CrazyThis blog is for a stay at home mom to vent about parenting, autism, depression, atheism, and other stuff. I have a sarcastic sense of humor and TMI problems. I have a son and a daughter, both on the autism spectrum. I have had depression for as long as I can remember, and was diagnosed as an adult with Asperger's. I am addicted to caffeine and crafting, and hate housework. My hubs is a special needs teacher, and a very patient man.Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-8044176900969759259.post-24090884027617932892018-04-07T20:58:00.000-06:002018-04-07T20:58:06.378-06:00Autism IsI am autistic. I was diagnosed late in life, but it made the past more comprehensible, how I was and am and how the world was and is with me.<br /><br /><div>
What is autism?<br /><div>
Weird question, really.</div>
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<br />Autism is a diagnosis. A disorder. A condition. An explanation. A description.</div>
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<br />Experiencing autism is like experiencing depression or genius or dyslexia: different for everyone, but inseparable from the person.</div>
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<br />It isn't something you can tease out from everything else about a person. Is isn't like diabetes or arthritis or autoimmune disorders, where there is a fairly clear line between the person and the problems. It isn't something that can be sorted into negative effects versus underlying health. It can't be treated like a disease, because the symptoms can be gifts, or burdens.<br />Things about autism that make problems for the people in my life are often the things I treasure about how I am. The things I do to cope, to fit in, to make it easier to be a part of the world, those are the things that make me feel artificial and alien. </div>
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<br />For me, autism is extremes. Contrasts.<br /></div>
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It is not noticing or reacting to a fractured bone in any visible way, but being driven to hysterical screams by the loose seam threads rubbing my skin where the tag has been removed from my clothes.<br />It is being able to tune out everything around me, but a tiny buzz at the wrong frequency is impossible to ignore or to bear.<br />It is noticing tiny details of the patterns in shadows, but walking into a tree because I didn't notice it was there.<br />It is remembering verbatim songs and locker combinations and conversations from my teen years, but unable to process the words of someone speaking to me in time to react appropriately.<br />It is being able to repeat back long strings of numbers, but unable to remember if I took my meds or brushed my teeth this morning.<br />It is breaking down with sorrow for strangers because I can imagine their pain so vividly, but unable to read the tone or expression in their voices or their faces.<br />It is feeling emotions so profound I can't hold still, sensations so intense that I can't contain myself, but must keep myself calm through self stimulation rituals and movements.<br />It is being unable to talk to people, then unable to stop talking.</div>
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<br />It is so different for each person who is autistic, yet with a thread of understanding and shared experience that runs through us when we discuss how it is together. </div>
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<br />It is understanding why sometimes, but being unable to express it to someone who doesn't experience the world and our bodies the way we do.<br />It is my heart breaking for my children, because I know how it is. It is frustration and dismay that I can't always do anything to help.<br /><br />It is wishing I could just be boring and typical and normal for a change.<br />It is wishing everyone could feel things the way I do.<br /><br />It is being who I am, without letting it limit my ability to live in the world.<br />It just IS.<br /></div>
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Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com1tag:blogger.com,1999:blog-8044176900969759259.post-78607705949953209912017-11-13T10:51:00.000-07:002017-11-13T10:51:06.718-07:00Autism travels (poorly) part oneWe went on a trip to my niece's wedding this weekend. It was a short trip; we flew in on Friday, back on Sunday. It being report card and IPP time for the husband, we couldn't take a lot of vacation time.<br />
<br />
I had the usual anxiety attack while packing, but breathed through it, took my meds, and got it done. We had a friend stay at the house to keep the pets company. We were ready.<br />
<br />
Except, as it turned out, I was not.<br />
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Hubs got off work, we headed for the airport. We parked in long term parking. We did not take a pic of where our car was, or make a written note of it. (This would bite us in the ass when we got home of course, but that will have to wait for part 2)<br />
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Got our checked baggage done, got to the ridiculously long security line and went to the front to see if we could used the expedited lane, given we are travelling with two special needs kids.<br />
<br />
And we got attitude, big time, from the security guy.<br />
Apparently, we should have got some kind of notification put on our boarding pass that our kids are autistic and will go batshit if we have to wait in line. He was snarky and condescending, but fine, whatever, we got our little lecture and were grudgingly permitted to go through the shorter line reserved for people with small children. (Six and nine are apparently not small enough, as a rule.)<br />
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It still took time, but the kids were better with it than usual, and managed to get through with minimal fuss. Monkey was even calm when he was randomly chosen to have his hands scanned (what are they scanning for? Gunpowder residue? Drugs? the kid is nine and autistic, for f*cks sake, what do they think he would be doing?) Fine. It was done. They kept trying to have Hubs step aside for Kitten to go through the body scanner, even after we explained that if Daddy was not in full view, she was not going to go to the other side no matter how much they insisted. That was finally accepted, Daddy was permitted to wait in front of the arch, and we made it through.<br />
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We were running late at this point, because hubs had misread the itinerary and we were taking off half an hour earlier than he'd thought. We got to the gate, and were asked to show ID.<br />
<br />
This is where <i>my</i> stupidity comes in. As it turns out, I had forgotten to get my driver's license renewed on my birthday in September. I needed 2 other pieces of government issued ID to get on the plane.<br />
<br />
I nearly had a breakdown.<br />
<br />
I really don't understand <i>why</i> identification that has expired by a few months is such an issue. The picture is still me. The birth date, vital statistics, name and address are all correct and current. My Driver's licence is expired, but my identity has not. It's ridiculous.<br />
<br />
After hunting through my wallet and purse for several minutes, I finally found my birth certificate and my government issued health care card. Except, they don't match. My birth certificate is, of course in my maiden name, and my AHC is in my married name. The two alternate pieces need to match. They called a supervisor to the gate.<br />
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At this point, it is taking all my control not to burst into tears, scream, and otherwise make a fool of myself and get us missing the flight they apparently weren't going to let me on anyway. Monkey was picking up on my anxiety and starting to freak out a bit himself, so I did my best to keep calm enough to keep him calm.<br />
<br />
I dug through the mess in my purse one more time, and finally, I found my SIN card, also in my maiden name, and so matched the birth certificate.<br />
<br />
Which was fine, except that my boarding pass and booking were in my married name.<br />
<br />
The gate person managed to change the name on the ticket in the computer, while the supervisor lectured me on having proper, matching, up to date ID when boarding a plane.<br />
<br />
I did not tell him to go f*ck himself. I feel I should get some credit for that.<br />
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We boarded at the last possible minute, dragging our carry-on luggage, of which there was a lot. The kids have flown before, but not recently, so we tried to prepare as best we could. I packed snacks, iPads, and drinks. Hubs bought the kids new headphones that they liked (!) and we made sure to pack lots of cords and chargers. Both kids had toys and stuffies. Diapers and wipes were stowed in every piece of luggage except Monkey's backpack.<br />
For economy flights, there is an extra charge to have any checked baggage, so we kept it to one suitcase for the lot of us. But we were on the plane. I did not burst into tears, pass out, or say anything I would regret.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguIXxsneGUnIbfG80dWKUfybPAZqNoNiG1fZOBtszpvkoQPokrHXtOUpoBENHvPTBZUDPMap0BeyQbUY-VztUKxf9wSz4WlK6JDEMb5Vo5VUYL1S9Zz-1J9V53bnT9sSzhFQJ_bJS-BzI/s1600/abiontheplane1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguIXxsneGUnIbfG80dWKUfybPAZqNoNiG1fZOBtszpvkoQPokrHXtOUpoBENHvPTBZUDPMap0BeyQbUY-VztUKxf9wSz4WlK6JDEMb5Vo5VUYL1S9Zz-1J9V53bnT9sSzhFQJ_bJS-BzI/s200/abiontheplane1.jpg" width="150" /></a>We plugged the kids' devices into the seat consoles, and the flight went more or less smoothly. Kitten was entranced by the view during take off, Monkey was absorbed in his iPad. Other than a few difficult moments with Monkey and the pressure changes (he can't really blow his nose, or follow any kind of direction on how to make his ears "pop") the flight went smoothly.<br />
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We got ourselves to the rental car desk, picked up the car with minimal hassle, and were off to our hotel.<br />
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That little misadventure will be in the next part, as this is already way too long a story. Stay tuned for part 2.Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-22824966918500866442017-04-11T09:43:00.001-06:002017-04-11T10:00:30.480-06:00Runner<div class="" data-block="true" data-editor="ei06q" data-offset-key="33ng3-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="33ng3-0-0" style="font-family: inherit;">The Kitten has upped her elopement game, and I can't run worth a damn. </span></div>
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<span data-offset-key="33ng3-0-0" style="font-family: inherit;">I have plantar fasciitis and am about as non-athletic as you can get.</span></div>
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<span style="font-family: inherit;">She has bolted into traffic when I release her car seat, when I have turned to hang up my keys before locking the deadbolt on the front door, and, memorably, out the gate, down the alley and up to ring a neighbour's doorbell before I caught up to her. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXKlXHJkxrFXpyv3CU-h0UucndbAzAnFkE-ZTwXNA0QpBs0EP2CnP9s0zuOuKoXY46jBE1_du0DT4_S4Sd7iOssA82w0SbmELRQkXvDpkXi5f8bGfk9Wafcs0Ij9nXZ0FtvnOYbNjXcTE/s1600/abibackdeck.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXKlXHJkxrFXpyv3CU-h0UucndbAzAnFkE-ZTwXNA0QpBs0EP2CnP9s0zuOuKoXY46jBE1_du0DT4_S4Sd7iOssA82w0SbmELRQkXvDpkXi5f8bGfk9Wafcs0Ij9nXZ0FtvnOYbNjXcTE/s400/abibackdeck.JPG" width="173" /></a><span style="font-family: inherit;">Any lapse holding her hand or task that requires me to let go for even a second results in her bolting off with no awareness of personal safety, no response to my calling her name or saying stop! or chasing her down. She shows no particular anger or distress before or after these incidents. She doesn't have a problem with holding my hand, but as soon as she sees an opportunity to run, she does. </span></div>
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<span data-offset-key="ba8rr-0-0" style="font-family: inherit;">The constant vigilance required is draining my energy and taking the fun out a lot of the activities I like to do with her, like the playground, or shopping. I</span><span style="font-family: inherit;"> want to let her play with the other kids when we go to pick up the Monkey at school, or even to just run around the field, but I can't. There isn't a fence around the schoolyard, and she is just so fast. </span></div>
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<span data-offset-key="ba8rr-0-0" style="font-family: inherit;">I am terrified she will get hit by a car, or fall into a ditch or hole, or get out of my sight and disappear.</span></div>
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<span style="font-family: inherit;">I'm not looking for advice. We have had lots of input, asked for, and not. I just wish more people understood the pressures of caring for a child who is functionally non-verbal, non-responsive, and with no danger sense, who wanders and bolts without warning. We are never off duty, never able to just let her do her own thing in a public place. Add the pica and her penchant for random digging and dumping of stuff, and it is a miracle she hasn't had a choking incident or got hurt badly. </span></div>
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<span data-offset-key="ba8rr-0-0" style="font-family: inherit;">I have had the parental duties of taking care of a toddler for four years, since she was actually 2 years old.</span></div>
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<span data-offset-key="ba8rr-0-0" style="font-family: inherit;">So, please don't ask me why she runs. We have been trying to figure it out for years. If I knew why, it would solve half the problem right there. Please don't suggest that she is running to, or from something. Much of the time, she just runs in whatever direction is clear, and when she tires of running, she stops, and I can catch up to her. Don't accuse me, or her dad, or her brother, of being abusive or neglectful, because whatever my inadequacies as a parent, I do not, and my family does not, abuse our Kitten.
I am just so tired of fearing for her. Of fearing that the tiniest lapse on my part will lead to tragic endings. </span></div>
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Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com1tag:blogger.com,1999:blog-8044176900969759259.post-31167787978565198552017-01-12T09:12:00.004-07:002017-01-12T09:12:48.203-07:00Functional schooling<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJRUviRsqOfFhO3I-zqqo2noSJ1HKnn3MwY30h845-mL7iYxv0S25xf68p-t5j3IH-lJ2zJrDO_Y6HgrvJMFk5Ybz5a1KZ9W1SP_XE0YXCOXmCHIiU3vvqZ16YvsiK7VgSljcYzMhkLCM/s1600/abi.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJRUviRsqOfFhO3I-zqqo2noSJ1HKnn3MwY30h845-mL7iYxv0S25xf68p-t5j3IH-lJ2zJrDO_Y6HgrvJMFk5Ybz5a1KZ9W1SP_XE0YXCOXmCHIiU3vvqZ16YvsiK7VgSljcYzMhkLCM/s200/abi.jpg" width="200" /></a>When my daughter was first diagnosed, it wasn't much of a surprise. She was 4, not talking, not playing with peers or adults, not toilet trained, repetitive actions and behaviours, PICA, elopement... Still, it hurt to know that both of our children were going to have similar struggles, require similar time, effort and (oh ye gods) more flippin' paperwork.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMpM0krDzsETv2oimQ_OZAVd18Ch0RrQdRHdekmtJz8-7D-q9Xo-AR0RZbcYlyu10kOao7Z4a28W7u5B0aVC0OsvYdWAO-eyv3RbhOWOv0NuWKA9YFOJpq1TufEvGaLu-AaOcmTRsDWW0/s1600/Abiattack%2521.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMpM0krDzsETv2oimQ_OZAVd18Ch0RrQdRHdekmtJz8-7D-q9Xo-AR0RZbcYlyu10kOao7Z4a28W7u5B0aVC0OsvYdWAO-eyv3RbhOWOv0NuWKA9YFOJpq1TufEvGaLu-AaOcmTRsDWW0/s200/Abiattack%2521.jpg" width="150" /></a><br />We dealt with it, moved on, got her the placement in an early intervention preschool program. Her January birthday meant we could wait an extra year to start kindergarten, and we arranged for her to stay in her preschool setting for her "kindergarten" year. Her publicly funded therapies have been a bit of a bust, but we continue to try.<br />
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My son has made leaps and bound of progress, even starting to overcome the speech impediment that has made language acquisition so much harder. He has learned to read, mastered more fine motor skills, and has some friends at school.<br />
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I have hopes for Kitten. She has time to learn.<br />
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Fast forward to 2017. Kitten turns 6 in less than a week. At this age, Monkey was talking and mostly toilet trained. We took a bit of a chance putting him in an integrated classroom, and for the most part, he flourished. This year he is in a new school and is thriving with his new teacher and aide.<br />
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Kitten talks a little more, but very little of it is functional. Plays with adults, if still not other children. She is still not toilet trained, but she is SO close to being ready. Her stims are more pronounced, but not generally obtrusive. Her PICA is worse, but we are better at keeping preferred non-food items out of her way. Her self-harm and aggressive behaviours come and go. Her elopements have become fewer, though perhaps not by her own desires, but our efforts to keep her safer.<br />
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Now we are starting to work on Grade 1 placement for Kitten.<br /><br />
Her evaluations are not a surprise. Her receptive language is estimated to be at age level. Her responsive/expressive language is 18 months. Self care is 2.5 years. Socially, 2 years. She is suspected of having ADHD as well, but can't really be formally evaluated as yet. Her IQ is probably average, but it is very hard to evaluate, as she has very low functional communication.<br />
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She is not a candidate for an integrated classroom. This is fair. She needs more time and therapies than a regular class can provide, and I don't want her to be left behind or neglected.<br /><br />
My husband teaches a classroom full of kids who are severely affected by ASD, low cognitive, and high incidence of co-morbid conditions, like Fragile X, CP, ADHD, learning disabilities, and other disorders.<br /><br />
This week at the placement meetings, Kitten's name was on the list. They are trying to decide if she should be placed in the same program at the local school where her dad teaches. He wouldn't be her teacher, but would be in the other classroom in this program. The other option is a class for "higher functioning" autistics, but with her low communication (a few words, a few PECS, a few signs) it seems that there would be a similar issue as with an integrated classroom.<br />
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I should be okay with this, her going into the "lower functioning" special needs classroom. It isn't as though I don't see all the reasons. My husband knows and highly recommends her prospective teacher and aides. She will get the help, therapies, and attention she needs.<br />
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But somehow, this is hard. Harder than expected.<br />
<br />
There is nothing wrong with getting Kitten what she needs to thrive. There is nothing wrong with needing different kinds of help than most. There is nothing wrong with being different.<br />
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So why am I so sad about this?<br />
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<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com1tag:blogger.com,1999:blog-8044176900969759259.post-33665489805138011702016-11-22T10:17:00.001-07:002016-11-22T10:17:27.817-07:00Decor by CrazyWatching interior decorating shows always makes me wonder what the designers would make of our little palace in the suburbs.<br />
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We went with a theme of "easy to clean" and "not likely to break" with a colour palette of "doesn't show dirt".<br />
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The furniture is classic "hand me downs from the parents" with Ikea accents, professionally distressed by pets and children. Window treatments in the "came with the house" style and flooring in "we can redo it when the kids are older".<br />
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Family room decor is mainly "children's arts and crafts" with accents of "put it on a high shelf" and vintage heirloom "OMG if you go near that I will take away your iPad for a month".<br />
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The children's bedrooms, are of course, individually decorated with a carpeting of Lego, naked dolls, broken toys and food scraps, with the TVs we swore (before we had kids) that we would never put in our child's room. Loose clothing and unidentified smears and stains add a lively joie de vivre to the walls and furniture.<br />
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The master bedroom is carefully arranged to give a restful "I will fold the goddam laundry tomorrow" vibe, and scattered books, half empty cups and cat vomit give a bit of casual personality to the room.<br />
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The bathrooms are equipped with modern fixtures in the "chipped, stained, and cheap contractor installed" motif, with mildew accents and "WTF is that smell?" throughout. Toothpaste, wet towels, dirty clothes, handprints in "please don't let that be what I think it is" on the doorknobs and walls liberally scattered to give it that homey, "whose turn is it to clean" feel.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih_PLRe-Wx-zsOO5S8DMPO432f6t4JQ5d_iakTC3bTeO4E8xCBkJTnaEr2CJZnpeh389INiyG019x48ZwaEZafhbEIo0F_eGS8FDyQBvHX2dtY4AVd-pr1RQloihMXWDc6hJH5TW_tmWw/s1600/IMG_1487.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih_PLRe-Wx-zsOO5S8DMPO432f6t4JQ5d_iakTC3bTeO4E8xCBkJTnaEr2CJZnpeh389INiyG019x48ZwaEZafhbEIo0F_eGS8FDyQBvHX2dtY4AVd-pr1RQloihMXWDc6hJH5TW_tmWw/s200/IMG_1487.JPG" width="200" /></a>The kitchen is beautifully outfitted with crusty counters and slightly damaged appliances, "not too breakable" and "cheap to replace" kitchenware and "bought it on sale" accouterments. Whimsical "last holiday's theme" linens add to the playful atmosphere, as do the paper, half eaten art supplies and half finished projects.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXpUaAAwnhKZusS6Y7I6lGpN19MNc2wTAsvVJYqQYtqwicjvK5oua149-LasbIpTPaJBN8JdO80la6kF4j2LCecJe_BGs9-JTDqQTltEwVIh7quXpsOPLlA5ptqJPVr_dJbtKV5rXldZI/s1600/IMG_0011.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXpUaAAwnhKZusS6Y7I6lGpN19MNc2wTAsvVJYqQYtqwicjvK5oua149-LasbIpTPaJBN8JdO80la6kF4j2LCecJe_BGs9-JTDqQTltEwVIh7quXpsOPLlA5ptqJPVr_dJbtKV5rXldZI/s200/IMG_0011.JPG" width="150" /></a>In all, a "shabby not so chic" style unifies the whole house with a large amount of pet hair, scratches and bite marks (cat, dog and child), random bits of paper and food wrappers throughout.<br />
<br />
We are design savvy.<br />
<br />
<br />
<br />
Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-6457091550587314782016-11-10T09:03:00.000-07:002016-11-10T09:03:58.932-07:00Weak and wearyRough week for America.<br />
<br />
A man who legitimizes rape culture, homophobia, misogyny, racism, sexism, violence and hatred has been elected to the presidency.<br />
<br />
So many Americans that I love are hurting. People wondering if their marriages will be valid tomorrow. People wondering if their identities will be respected. People afraid that their religious affiliations will lead to loss of citizenship, freedom and safety. People who are disabled in some way are afraid that their basic needs as humans will not be met, that they will not be able to get appropriate health care, education, or housing. People who are not white, straight, cisgender male, or Christian are afraid for their quality of life, their rights, their very right to exist.<br />
<br />
I am a Canadian, so this will not be my leader. I am still traumatized by this election.<br />
<br />
I watch as a man who has been accused of sexual predation and assault is put in one of the most powerful positions of leadership in the world.<br />
<br />
I watch as a man who is used to coercing, manipulating, bullying and buying prestige, power, and privilege is given exactly what he wants.<br />
<br />
I am autistic, as are my children. I am female. I have been bullied most of my life. I have been the victim of molestation and rape, as a child and an adult. I am not a fighter. I am weak and frightened, and tend to use gentle words and avoidance as my strategies to avoid being hurt. I suppose I am a coward in many ways. My fear tends to paralyse me. I am pretty calm in an emergency, but will break down soon after, and violence terrifies me. I am physically and emotionally weak and vulnerable.<br />
<br />
So, according to the kind of man Trump seems to be, I am of little value, a thing to be used should he care to do so (although I suspect I am too fat and old for his tastes), but then discarded, disregarded and degraded.<br />
<br />
This is why this election has been so very terrifying, so very triggering for me.<br />
<br />
Because I have experienced a great deal of bullying and abuse, and the one thing I had tried to forget about that experience has been shoved into my face again and it is not okay.<br />
<br />
That one thing?<br />
<br />
That the bullies always win.<br />
<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-88925994883663464012016-04-15T16:24:00.003-06:002016-04-15T16:24:59.326-06:00Service (or not)<br /><br />Is it too much to ask that a service provider put my child before their convenience?<div>
<br /></div>
<div>
Yesterday we finally had a meeting to discuss my daughter's services. They had been put on a 6 month "break" because her home aide was suddenly not working for them anymore. No explanation given, no transition, just a call that she was no longer working there, and that they had no on to replace her. Kitten spent weeks waiting by the door for her after school, crying, "My L---e. My L---e has disappeared!"</div>
<div>
<br /></div>
<div>
At that point, we should have went looking for a new service provider. But then my dad got the news that his cancer is back. Then, just before Christmas, my mother died suddenly of a heart attack. So I let it go. We were reeling with the news, making new plans to drive the 11 hour trip to be with my dad and I just couldn't deal with the paperwork. </div>
<div>
<br /></div>
<div>
We have already made plans to visit Dad again this summer. Now they are telling us that if we don't start services with them now, they can't guarantee a worker for her in the fall. Plus, they want us to commit to a full summer of 3 hours a day with the worker for the bullshit "<a href="http://stayathomecrazymom.blogspot.ca/2015/12/epiphany-its-all-my-fault-again.html" target="_blank">family centred</a>" approach, which means I have to be present and involved for every session, and the therapists teach me to administer therapies to my child, essentially. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguxQyi_3aruxoqWufAtNvTgjZ8IEF4PYb71v8RxAYK78pbOFj9hyphenhyphenzx4FU5q32HM3CvzINXWSk-r03yMF9EWxAD1FnoGLq_VQ7Sc6QyaZDGqKkHLOnP-9Ttpvv2muAdOp3zJl4MxqDwJqI/s1600/abiblog.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguxQyi_3aruxoqWufAtNvTgjZ8IEF4PYb71v8RxAYK78pbOFj9hyphenhyphenzx4FU5q32HM3CvzINXWSk-r03yMF9EWxAD1FnoGLq_VQ7Sc6QyaZDGqKkHLOnP-9Ttpvv2muAdOp3zJl4MxqDwJqI/s320/abiblog.jpg" width="252" /></a><br />Then they gave me their take on why they made us wait that six months, yet won't commit to providing services for Kitten now. They feel that I am not ready to commit to the process, and they don't want to put stress on ME. They keep talking about me being "ready" as if my daughter is just going to stay in stasis while she waits. <br /><br />She is 5 now. She is going to be in kindergarten in the fall. She has almost no functional language, is not potty trained, is barely tolerant of parallel play with her peers, and is a risk for elopement because classrooms cannot be locked. How is she supposed to develop speech, life skills, safety awareness, social skills, if she can't get therapists because the provider wants to wait until I'M ready? </div>
<div>
No question, I hate the <a href="http://stayathomecrazymom.blogspot.ca/2013/10/my-house-their-rules.html" target="_blank">exclusively in-home therapy, family centred approach</a>, but I will endure it for my child to get the help she needs. </div>
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<br /></div>
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We will now look at a new service provider. Again.Time doesn't stop for us to catch our breath. I'm still not happy, not optimistic about the prospects, still grieving for my mother, but Kitten can't wait. </div>
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Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com1tag:blogger.com,1999:blog-8044176900969759259.post-33964961726111566082016-04-05T11:29:00.000-06:002016-04-14T05:56:33.699-06:00On awarenessLast week at the bus stop, I talked to another mom as we stood there waiting for the first child to make it off the bus. That child is autistic, with what is clearly SPD and is always crying and throwing his backpack, noise cancelling headphones, and finally himself at his mom as he exits the bus. She is likely trying to break him of the habit of expecting her to carry him off the bus, and I feel for her. He is probably 60+ pounds and nearly 5 feet tall, and she is quite tiny.<br />
<br />
The mom I was chatting with looked slightly appalled as the usual routine crying and screaming took place. I noted that it could be hard sometimes as our children get older and bigger. That was when she replied, "Well, there is obviously something wrong with him. She should drive him to and from school in her car."<br />
<br />
My son stumbled off the bus (his coordination is still problematic), and I commented, calmly, "He is autistic," as I steadied my son.<br />
<br />
She replied, "Well, yes, you can see that he has problems. His poor mother."<br />
<br />
I replied, "My son is autistic too."<br />
<br />
She was nonplussed. I don't know what she was thinking. She did not, to her credit, tell me she was sorry for me or my son. She finally said, "Well, okay, I see." Then, "I know now. Good."<br />
<br />
Her daughters jumped off the bus, giggling like mad, and we parted ways, but it left me a bit out of sorts.<br />
<br />
This was the same lady who tried to talk to my daughter earlier that week, and when I told her Kitten is non-verbal, gave me a blank stare, then babbled a bit about how some children are shy and only talk to their parents, and I just let it go because I didn't want to get into it, and the bus was arriving.<br />
<br />
This isn't the worst kind of person I have dealt with. My "favourite" is still the woman at Monkey's gym and swim who, upon learning that my son was autistic, asked, "Your son has autism? Are you sure that he should be in a class with kids who don't have autism?"<br />
<br />
It isn't that folks are deliberately mean. It is just so discouraging that "awareness" is still lacking with most people.<br />
<br />
I have to remember that most people, while they might know someone with an autistic child, or be related to someone who does, they are not immersed in non-optional autism awareness 24 hours a day. I forget that the terminology, the jargon of autism isn't common knowledge. For most people, autism awareness is barely on their radar, if at all.<br />
<br />
That is why I don't agree when people say that the message should be "autism acceptance" or "embracing autism" rather than "autism awareness". For the parents, caregivers, teachers and professionals who are involved with autistics, we need to go beyond awareness, certainly, but the general public really does still need that basic education about autism that we find so familiar and simple. It is hard to accept, embrace or celebrate what you barely understand.Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-54405315189031984602016-03-01T12:17:00.000-07:002016-03-01T12:24:17.962-07:00Social Worker's MonthIt is, I am told, Social Work Month.<br /><br /><div>
A lot of special needs parents and adults have had interactions with this group of overworked, underappreciated professionals. This is one of mine.<br /></div>
<div>
My son was 4 when we started him in an early intervention program. At that time, he was non-verbal, had a lot of SIBs, was inclined to dump everything in the kitchen into large, disgusting piles, and he was a frequent fecal smearer. <br /></div>
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As I have mentioned before, all government funded therapies for early intervention are in-home. <br /></div>
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We had a few rough spots with our first service provider, although at the time I mostly blamed myself. My housekeeping was never up to their standards. (see <a href="http://stayathomecrazymom.blogspot.ca/2012/09/i-have-failed.html">I have failed</a>)<br /></div>
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We bought, with my mother-in-law's help, a small carpet cleaner, used disinfectant wipes, swept, vacuumed and mopped multiple times a day, and I was hopeful that it was enough. <br /><br />It wasn't.<br /><br />One day I got a knock on the door, and a pleasant middle aged man was at the door. He presented identification, and told me that there had been a call to child services about conditions in our home. That he was there to investigate this.<br /><br />I honestly don't remember whether the house was at its best that day or not. Probably not. It was in the afternoon, while the Monkey was at his preschool, and Kitten was still a baby. I must have been polite, let him in, spoken at least somewhat coherently. <br /><br />He went to each of the rooms in the house. The bedroom where Monkey had only the night before defecated and played with his toys in the feces. The bathroom where we cleaned him up. The living room with its hand-me-down cat scratched furniture and scattering of random toys, clothes and baby stuff. The kitchen, which I still hadn't managed to entirely rid of the soya sauce/formula/coffee stink from the Monkey's latest successful infiltration of the pantry.<br /><br />The social services worker was quiet, patient, and pretty thorough in his inspection. I was in a state of shocked panic. All my doubts about what kind of parent I was were slamming through my brain. I remember trying to apologize for the mess, when I mentioned Monkey was autistic, and admitting that he smeared, and that I tried to get everything cleaned up but I didn't know, I might have missed something. <br /><br />And then he stopped me and asked, sounding irritated, but not with me, "Hold on. Your son has autism?"<br /><br />"Yes. He is at his special needs preschool right now."<br /><br />"Somehow the reporter failed to mention that." And he sat down, and talked to me. <br /><br />He said that even not knowing my son was autistic, he had found no grounds for concern in our house. The fact that there was a bit of a mess of toys and household stuff just told him that we cared about our kids and gave them an enriched environment. The report had mentioned the smell of feces and unpleasant food smells, but he couldn't smell any fecal odors, so we must have done a very good job of cleaning up, and the food smells didn't smell like rot or garbage, and there were no insect problems present, so there was no concern on his part there.<br /></div>
<div>
In fact, he had no concerns at all about the fitness of our home for our kids. He was clearly annoyed on our behalf as well as his own, that someone had called about this, without informing the office that we had a child with autism. He offered to give us a list of services available and help us find assistance for Monkey, but when I told him what we were doing and what we had applied for so far, he told me we were doing everything he would recommend, and it looked like we were doing a great job. <br /></div>
<div>
He still had to get my husband to come in with Monkey for a brief interview, but he saw no reason that when that was done, that they wouldn't be closing the case with no further action required. <br /></div>
<div>
He told me we were doing a great job. <br />It was the first time anyone had ever said that about my parenting.<br />That I wasn't failing.<br /><br />Since then, I have met, online and offline, a lot of social workers. I have been delighted to discover that the worker we dealt with was not an exception, but one of many good, compassionate people who do a job that is not in any way easy. <br />Their clients include lot of people who have been put down, marginalized, and abused until they lash out at these front line workers who are there to help. Social workers handle these attacks with compassion, humour and astonishing grace under pressure. <br />They are criticised for not being perfect, for the flaws in the system that make their jobs insanely complicated and sometimes nearly impossible. </div>
<div>
They get frustrated and upset and angry, but they are professionals, and handle themselves as professionals. <br />The majority of social workers that I have known are dedicated, caring, and determined people who are genuinely interested in helping. <br /><br />I want to say thank you, to the worker who investigated the call against us, and made it an ultimately positive experience. To all of the workers who deal with terrible situations and difficult people and still retain compassion. Thank you. <br /></div>
Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-2962300898882770802016-02-01T12:00:00.000-07:002016-02-01T12:00:11.278-07:00Positive notesLooking over the past few weeks, I have been in a morass of depression and anxiety. My mother died the Monday before Christmas, triggering a massive low that I can't seem to shake. So, I have been trying to dig up some positive emotion to help me through.<br />
<br />
I have been griping a lot about people being ignorant, thoughtless and clueless about autism, and treating my kids (and me) like freaks or weak vessels. The details of those aren't important, and I need to stop dwelling on them. But for every incident of that sort, there is a balance of positive encounters with people who are more kind and genuinely compassionate. So, here are a few to thank.<br />
<br />
The lady at the Burger King in the long skirt who didn't flinch when my almost eight year old decided to duck under it like he does with me (he calls it his tent), but laughed with him, and smiled with genuine warmth as I stammered out an apology and explanation. She made an awkward moment into no big deal.<br />
<br />
The guy at the Tim Hortons who offered my sad, stimmy boy a TimBit to cheer him up when I ordered my coffee. He wasn't put off when Monkey didn't make eye contact or thank him, he just said, "I hope it helps him feel better." For the record, it really did help, for me and for my son.<br />
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The older fellow working at the Wal-Mart who allowed my son to talk his ear off about Skylanders for 10 solid minutes, and who smiled and nodded in all the right places, which is better than I can do most days. And then headed for the breakroom. I hope he got to finish his full break, but he delayed long enough to really make the Monkey's day, when he really didn't have to.<br />
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The little girl at the park in North Delta, who, upon hearing that the Kitten didn't talk, said, "That's okay, we can still play," and proceeded to play with my daughter until she had to leave. A lot of kids are put off by Kitten's silence and her tendency to wander off unexpectedly. This girl wasn't phased. That says a lot for me about the people who are raising her, too. Good on you. I wish you lived in our home city so we could arrange playdates.<br />
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There are so many encounters with people over the course of our lives that leave us upset or angry or just sad. I just wanted to remind myself that there are strangers who accept, who are kind, who care that other people are okay. Who might not know why our kids act as they do, but who accept them as they are, without judgement.<br />
<br />
There is hope.<br />
<br />
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<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-85727747268493481682015-12-11T15:00:00.002-07:002015-12-11T15:00:36.660-07:00Epiphany: It's all my fault. Again.<div>
I don't know how I missed this before. I don't know why it surprises me.</div>
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<br /></div>
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Our government funded services have been changing the criteria for the therapies they provide. They have been in-home therapy only, for as long as we have needed services, which has its own pluses and minuses. (see this post <a href="http://stayathomecrazymom.blogspot.ca/2013/10/my-house-their-rules.html" target="_blank">My house, their rules</a>) That hasn't changed.</div>
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The 'new' approach is called "family focused". It means that more and more emphasis must be put on teaching the parent how to work with their child, and the methodologies recommended by the specialists. The parent present during the daily therapy sessions is expected to be hands on for the whole session, involved in all the activities. </div>
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Now, it has been bad enough that I have to open my home to strangers who tell me how to parent and who critique my housekeeping and manners. </div>
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Now I am being judged on my mood and attitude at every single session.</div>
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I suppose I should feel grateful that services for my child are available at all, but I am really tired of being expected to grateful for the presence of people I am not comfortable with, doing things I am not comfortable doing, for my child, whom I worry is going to lose ground because I am not learning fast enough. </div>
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Then it hit me. The government is funding, not help for my kids, but training for me to do the jobs of all the people who are being compelled to train me, so that they can provide less qualified aides, and fewer specialist hours. In short, they are giving short term funding to train parents to take over as therapists for their kids, so they needn't pay for those therapists as the children get older. They are making it harder to get services for so called "high functioning" autistic children. Integration is the only viable option for a child who is of average or higher intelligence, but has social and sensory special needs, assuming you want your child to get the curriculum that will keep them at grade level with their peers, but fewer supports are available for those kids. </div>
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It is no longer enough that I am raising my children, now I am expected to be their occupational therapist, speech pathologist, physiotherapist and developmental psychologist. </div>
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So if my child does not succeed to the best of her ability, it is my fault for not learning quickly enough, or working hard enough. It's all on me. Again.</div>
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Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com1tag:blogger.com,1999:blog-8044176900969759259.post-46433555941531901352015-10-19T21:37:00.003-06:002015-10-19T21:37:53.032-06:00What I learned in grade schoolPeople often seem to look back at their grade school years as a time of carefree childhood joys and a lack of responsibilities and woes. Like that book "All I Really Need to Know I Learned in Kindergarten" (Robert Fulghum), we think of it as a time of simple rules and simple moral lessons.<br />
<br />
My memories of grade school aren't like that.<br />
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I was bullied. I was abused. I hated myself. I felt guilty, afraid and worthless.<br />
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I didn't believe that the future would be any different.<br />
I would never have believed anyone who told me it would get better.<br />
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<br />
If I could somehow transmit to that kid the wisdom of forty-some years of life lessons, stuff that really mattered, it would look something like this.<br />
<br />
<br />
<ol>
<li>Bullying isn't about you, and nothing you can or should change about yourself will stop a bully from doing what they do. You are bullied in grade school, you will be bullied in middle school and high school, and right into adulthood. The only measure that will help is to get away from wherever you are being bullied, and the bullies themselves. You will find safe places and people, and hopefully you can avoid the worst of the abuse by getting out of the target range. Most of the time the damage it causes won't be bruises or scrapes, but inside, where you can't "prove" you are damaged. Telling adults won't help most of the time, because adults don't know how to handle it either. This isn't fair, but it is true. Try to find adults who will help to separate you from the bully, or remove you from the situation. It isn't your fault. You are not defective or wrong. <span style="color: #cc0000;"><b>People will not always like you, but they have no excuse for bullying you. </b></span></li>
<li>Sexual abuse isn't about you either. <span style="color: #cc0000;"><b>It is not your fault.</b></span> None of it.You didn't ask for it. You don't deserve it. No matter how old you were, how you felt about what was done to and with you, how you acted or didn't act, it is not your fault. </li>
<li>You aren't going to be good at everything you want to be good at. Don't let it stop you from enjoying what you do. Don't let the expectations of your parents or friends define your worth.<span style="color: #cc0000;"><b> If no one is paying you to do it, you answer only to yourself. </b></span></li>
<li>No matter who says "you can be anything and do anything you set your mind to", there will be things you can't do. Don't hate yourself for trying hard, but not making the cut. Don't hate yourself when you realize you can't do what you wanted to. That kind of thinking leads to believing you are a failure, because you have failed. You will find you are good at some things that you hate doing, and bad at some things that you love doing. You will find things you can and want to do. Work at those. Play with the others. <span style="color: #cc0000;"><b>Take what joy and learning you can from everything you do, even if you suck at it.</b></span></li>
<li>You will never be better than everyone else at something. There is always someone better, and there is always someone who will lord it over you.You will find that being in the top 10 when you didn't have to work for it will never give you the satisfaction that being in the top 25 at something you have to try your hardest to get good at will give you. <span style="color: #cc0000;"><b>How you compare to others really isn't important.</b></span> </li>
<li>Try to set goals that you can control, not to be better than everyone, but to get better than you were. Don't let anyone tell you that you should give up because you will never be the best. If you are as good as you can get, and better the more you work at it, then you have accomplished something. <b><span style="color: #cc0000;">If you take joy in what you can do, what you can't won't matter so much. </span></b></li>
<li>Find work that you like, but don't worry if you don't love it. Not everyone can make a living at what they are truly passionate about. That said, don't settle for work that you hate, just because it pays well. <span style="color: #cc0000;"><b>Don't let your job define your character, or your wage define your worth.</b></span> If you do manage to make enough at something you love, count yourself lucky. </li>
<li><span style="color: #cc0000;"><b>Nothing good lasts forever.</b></span> Enjoy the moment, let go of it, keep the memory. <span style="color: #cc0000;"><b>Nothing bad lasts forever. </b></span>Learn what you can, then let it go too. Time moves, things change. Don't focus on the reward, or dread the punishment. Live through it. Move on. Don't focus on the past either. Learn, but don't let it control you. You make mistakes. You do amazing things. Neither is a reason to stop enjoying and working at what you do.</li>
<li>You can't make the past go away. Trying to pretend it never happened is not helpful. Denying the pain is denying yourself any way of easing it. <span style="color: #cc0000;"><b>You can't find help without admitting you are hurt. </b></span></li>
<li>The damage that has been done to you is not your fault, but no one can help you until you are ready to work at repairing the damage. Really. If you need to set blame, go ahead, but blame won't really help you heal. Forgiving the bullies and abusers isn't necessary either. Make them unimportant, take away their power to harm you. Accept that terrible things have happened to you, and it isn't your fault, but the burden is on you to seek out and to accept the help you need. It isn't fair. <b><span style="color: #cc0000;">It just is what it is.</span></b></li>
<li>Take your share. Enjoy your accomplishments. Being humble is good, but being self-depreciating is a bad habit. Take credit when it is due. Take sincere compliments gracefully, even if you have trouble believing them. <span style="color: #cc0000;"><b>You are worthy. You are deserving. You matter. </b></span></li>
<li><span style="color: #cc0000;"><b>It really will get better.</b></span> It will never be perfect, but it will be better. </li>
<li><span style="color: #cc0000;"><b>You will find people who don't want to change you, but will love and accept and even admire you for who you are.</b></span> They won't care if you are awkward or uneasy. This is your tribe. They will be few and precious, so hold on to them. Some will be easy to find, and some will take a little time to recognize as kindred spirits. They will, in time, be closer to you than family. </li>
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I know these things, but have trouble living them. I ache for the child I was. I fear for the pain my children will inevitably feel.</div>
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I'm still a work in progress. I wish life was fair, but I know it isn't. I can't change that. What I can do, hopefully, is heal. Be an example to my kids. Try to show that my scars are not what defines me, but are a part of me just the same. That I have nothing to be ashamed of. </div>
Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-12673802649827090692015-10-09T09:42:00.001-06:002015-10-09T09:59:10.620-06:00Purposeless Functioning LevelsSeveral times recently, people who are not directly connected with autism have asked me about "functioning" as a term to describe how severe a child's autism is. One was about how "high functioning" Monkey was, compared to Kitten. One was to ask if another child on Monkey's school bus was "lower functioning" than Monkey, because the kid had noise cancelling headphones on the bus, and some more obvious odd behaviours when he was picked up by his mum. The third was from a teacher who has not taught any autistic kids before, about what level of "functioning" an autistic child had to have before they could be integrated into a mainstream classroom, as Monkey is.<br />
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I don't like the terms "low functioning" or "high functioning" in relation to autism. For one, it is hard to quantify a meaningful measure when the spectrum has broad as well as deep criteria for diagnosis. Is a child who is friendly and interacts well with adults, has poor or no language capability, many sensory sensitivities that limit ability to be in high stimulus environments, and can also draw or paint exceptionally well, "high" or "low" functioning? How about a child who communicates with language, is very good at academic work, but has significant problems with social situations, can't write with regular writing implements or play any kind of sports due to apraxia, and has constant and noticeable stims?<br />
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When people use this measure, you can see that they want to sort children into "boxes" to make thinking about them easier and less complicated. At best, they see "functioning" as a sort of range of values from 0, unable to function within society at all without assistance, to 100, virtually indistinguishable from "average".<br />
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The worst part of these terms as they are used isn't just the assumption of a single measure to apply to a whole range of symptoms, behaviours, and sensory processing disorders. It is the whole concept of "functioning".<br />
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Because what people seem to mean by "functioning" is "how well does this child meet our expectations of normal?" and "how well does this child fit in with peers?", which boils down to "How well can this child hide the differences that autism creates, and fake being normal?"<br />
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My kids are whole beings. Kitten is more at ease socially, but has little practical language. Monkey has come past being non-verbal, but has a significant speech impediment, and suffers socially. Kitten has more frequent and easily recognized stims, but Monkey has more disruptive stims that are often misunderstood to be deliberately annoying behaviours. Kitten has more violent behaviours towards herself and others, Monkey has crippling anxiety and low self-worth. Some of these things are going to be "treatable" and certainly some of them will change over time. Does a child with "high functioning" autism who later exhibits more unusual and socially awkward behaviours become "low functioning"? Does a child with "low functioning" autism who learns to effectively use language suddenly become "higher functioning"? Autism is a part of brain function, it doesn't go away just because the child learns and grows.<br />
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Are we really more interested in how a child manages to pass for "normal" than how to help them find their own ways to adapt and thrive, and to find their own place in society as their own authentic autistic self? <br />
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Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-37871393841472967592015-05-01T10:19:00.000-06:002015-05-01T10:19:19.485-06:00Victim shamingRape culture. Bullying. Positive thinking. Self defense. Disease survivors. Empowerment. Bootstrap economic strategy.<br />
All of these things, good, bad, wrong or right, have one thing I can't bear to stay quiet about.<br />
Victim shaming.<br />
The irony is not lost on me, that some of these are supposed to be beneficial, even preventing harm to people through their own actions.<br />
That is what bothers me.<br />
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Rape culture is an obvious evil, and one of the worst for the brand of victim shame that involves blaming the victim for motivating the crime. This normalizes a criminal act that does terrible harm to the victims. The same can be said for bullying. The idea is that if the victim of these acts would just take actions to prevent or counter the perpetrator from committing the acts against them, these injuries would not take place.<br />
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So a rape victim should have been less provocative of a sexual reaction, by dressing less provocatively, or by changing their attitude or demeanor, or by not being in places where a rape might take place. If they had to be there, wear that, or act that way, they should have been expecting to raped, and if they couldn't defend themselves, it was their own fault.<br />
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A bullying victim should stand up for themselves, defend themselves, fight back, or stay with people who can defend or deflect the bullies. If they continue to be bullied, it is because they are weak, or poorly taught, or too cowardly to ask for help.<br />
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Diseases are for the weak, too. If you would just think the right thoughts, eat the right foods, behave properly, worship a god in the correct manor, abstain from dangerous behaviours, you wouldn't get the disease in the first place, and if you did, you could fight it off, and be a survivor.<br />
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If you think positively, then, all things will come to you. This myth says that if you visualize success, you will succeed. Fake it till you make it. Believe that you will triumph, and victory will be yours! If you fail, you didn't try hard enough. You didn't have faith. You didn't genuinely believe.<br />
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The whole thing boils down to being in charge of your own life, your own destiny. This is positive, right? Empowering? We really want to believe we can control everything.<br />
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Except if it doesn't happen. Then everything that goes wrong is your own fault. You are sick because you have a "victim mentality". You were raped or bullied because you set yourself up for it. You failed because you are stupid, or you didn't try hard enough. You are poor because you didn't work hard enough.<br />
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This is making the status of being a victim of the actions of others into a shameful thing. To the point that we change the language of being a victim, to being a "survivor". A "victim" is weak and pitiful. A "survivor" is powerful, admirable. This is said in good intention, to give the victim a sense of hope, that they have come through bad experiences, and are empowered to survive more.<br />
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Again, except when it doesn't happen. When you succumb to pain, disease, oppression. The blame shifts from the cause to the effect.<br />
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Being a victim is a fact, not a choice. Bad things happen to people who do not deserve them. There are things we don't have control over. How do we help to prevent the bad things? Well, we can teach that being a perpetrator is shameful, and being a victim is not. We can try to teach that no one is within their rights to bully anyone just because the target is powerless to stop or prevent the action.<br />
When those who don't learn these things commit these acts, we can focus on helping the victims, not asking what they could have done to prevent the problem, but what we as a society can do to stop it from happening again. We have to stop expecting the victims and those in danger of becoming victims to take all the action, when the existence of those who do harm, as well as the opportunity to do harm, is something we need to tackle as a social problem. We need to recognize that when someone is suffering from poverty or disease, they deserve help and understanding, not pity, nor derision.<br />
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Being a victim is not a reason for shame. Ignoring or blaming the victim should be.<br />
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<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-45990190961294695162015-04-21T11:34:00.000-06:002015-04-21T11:34:33.060-06:00DeservingI find that with the coming American elections (yes, we feel the effects even up here, the neighbours to the north), I am more and more disturbed by the political rhetoric of privilege and entitlement.It isn't so very different in Canada. The questions of who gets the "rights" of citizenship are always relevant issues.<br />
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I have a problem. Nothing new, just the reiteration of every problem I have ever had, playing through my brain on a loop.<br />
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There is a lot of talk about who deserves to be helped, supported, subsidized or assisted by the government (ie, the people. You. Your tax dollars.), and who should be told no. While corporations get bail outs and tax breaks, single parents get assistance cuts, homeless citizens get their shelters and housing options removed, working adults have to try to live on less than what a lot of the complainers pay for coffee, seniors and people with disabilities get shamed and marginalized, immigrants get ridiculed and reviled, people on welfare get drug tested and judgements based on what is in their grocery carts.<br />
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So who is deserving? Let me give you a clue - not the corporate entity.<br />
Everyone else. EVERYONE. Every human being deserves to have what they need to live a healthy, secure, enjoyable life. And those who have this by whatever means they have achieved it have no reasonable cause to say otherwise.<br />
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But what about welfare fraud? What about illegal immigrants who are breaking all the laws to get here? What about drug addicts and lazy bums who don't want to help themselves?<br />
Yes. They deserve to live and thrive and be happy. All of them. Even those who have committed crimes and are incarcerated deserve to be treated like human beings. There will always be people who will take what they are given and waste it, refuse the help they are given, or try to harm those who try to help.<br />
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There are people who are mentally or physically ill, who need to be supported and monitored, even though they may not want to be helped. Drug addiction and substance abuse are as much a result as a cause of poverty. There are addicts at every economic level. Are we really saying that only those who can pay for it should get help? That only those who follow a strict set of moral and philosophical views (at least outwardly) deserve our support? I guess I betray my socialist soul here, as I say that when we make these decisions, we are letting down our society, our fellow humans. Just because you don't like someone, doesn't mean they deserve to die. Because you feel someone is wrong, doesn't mean they deserve to be treated as garbage.<br />
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A person on food assistance should be allowed to buy cookies and treats for their kids now and then. And for themselves, too. Why is this so hard to take? A treat can make living in poverty less miserable. Of course, if you see poverty as a moral failing, it colours your perception of "deserving" to enjoy life. People don't generally choose to be poor, though, nor are circumstances always due to poor choices. We don't get to choose where or when we are born. We don't get to choose what our neighbourhood or school is like growing up. When we become adults, we can make some choices, but much of what we have depends on what our parents had. If we as a society can give people a better start, hopefully we can change some of these outcomes, but only if we start with that premise that everyone deserves that better start.<br />
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Just because someone is poor, doesn't mean they deserve to die of preventable causes, because they can't afford to see a health care provider. Just because someone has a long term or permanent health issue does not mean that they do not deserve health insurance. Medical procedures should not be based on whether the patient can afford them. Frankly, those who need to get themselves or their families medical treatment don't deserve to be reduced to poverty to get the help they need.<br />
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<b><span style="color: #660000;">It comes down to feeling deserving, at a basic level. Feeling worthy of existence. Like a basically worthwhile human being, whatever our circumstances. </span></b><br />
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I have never entirely managed this on an emotional level. I remember very clearly when I was 14, and talking to a school counselor. She asked why I didn't come for my appointment, and I told her it was because my teacher wouldn't let me go without a pass, and I had lost mine. She then asked why I didn't have the teacher call her and get her okay.<br />
"Because it wasn't worth it. I'm not that important. I don't deserve special treatment."<br />
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Deserve. Special treatment. Important. Worth it.<br />
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Now I fight for my kids to get what they need at school. So they can be as successful as they are capable of, because I know they are worth it. Not because they are in any way more important than every other child in school. Because they are equally important. Because they need what they need, not what other people feel they are worthy of, but what all humans deserve. A chance to flourish. The means to enjoy life. The opportunity to contribute to human society.<br />
They are deserving. We are deserving. We are valuable. We are worth it. All of us. </div>
Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com0tag:blogger.com,1999:blog-8044176900969759259.post-62586033342245534192014-10-13T10:13:00.003-06:002014-10-13T10:13:44.969-06:00UnqualifiedI'll tell you a secret.<br />
I don't know what I'm doing.<br />
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I don't know how to be a wife and partner to my husband without subsuming my needs. I don't know how to talk about what's bothering me without it coming out as an accusation or a complaint. I don't know how to explain why I haven't done all the things when I really don't know why, other than the feeling of being so overwhelmed that I can't begin.<br />
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I don't know what I'm doing.<br />
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We just got a puppy. We have one hostile and one geriatric cat. I don't know how to get them all to get along, when the pup just wants to play, and the hostile cat hisses and spits every time he comes anywhere near him. I don't know how to house train a puppy, or get him to stop nipping at feet, or convince the children that the dog is just a puppy wanting to play, and not a danger or mean. <br />
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I don't know what I'm doing.<br />
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I have no idea how to be a parent, either to an ordinary kid, a special needs kid, or any kid. Every day I feel out of my depth, out of my comfort zone, out of my mind. I don't know how to engage my 6 year old, get him to practice his writing or do his PT exercises to strengthen his loose limbed body, or to eat enough decent food to keep him growing healthy. I don't know how to entertain my 3 year old, or get her to stop eating not-food, or convince her that communicating is in her best interests. I don't know how to get either kid to sleep well or develop good habits or avoid bad ones.<br />
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I don't know what I'm doing.<br />
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I don't know how to talk to people without sharing too much or too little, what appropriate topics of conversation are or how to interpret any but the most basic of facial expressions. I don't know how to keep myself from running from social contact or avoiding it altogether. I don't know how to take the rare successful social encounters and turn them into friendships. I don't know how to keep friendships going.<br />
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I don't know what I'm doing.<br />
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I don't know how to advocate for my children. I don't know how to navigate the maze of paperwork and meetings and therapists and doctors and teachers. I don't know how to keep my kids safe while ensuring their happiness and growth. I don't know how to walk the fine line of getting them educated while respecting their individuality.<br />
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I don't know what I'm doing.<br />
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I don't know how to keep the house clean, keep the kids safe and the pets from wrecking stuff, and still find time to breathe. I don't know how to keep myself focused and calm and functional when my brain is trying to destroy me. I don't know how to give myself "me time" without depriving my family. I don't know how to get help when my own disabilities overwhelm me.<br />
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I don't know what I'm doing.<br />
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I'm tired and scared and worried and angry. Because so many people are counting on me to get it right. Because I have to put on the hat of competent adult and live in the world, and reassure everyone that I can do this.<br />
But I am not competent. I am not qualified for the position of wife, mother, friend, adult.<br />
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Because I don't know what I'm doing.Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com2tag:blogger.com,1999:blog-8044176900969759259.post-974339995832980502014-07-16T10:27:00.000-06:002014-07-16T10:27:34.710-06:00A day in the life of our autism, summer editionI wake up to my six year old son climbing into our bed at 4:30. He brings Big Teddy, Little Teddy, three pillows, a blanket and a handful of Angry Birds.<div>
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I hear my three year old up and moving, and find her splashing and stimming happily in the cats' water dish, the canisters I keep baking supplies in moved from the pantry to the middle of the kitchen floor, arranged in a descending spiral of sizes, each with a correspondingly sized Dora the Explorer or Abby Cadaby doll perched on top. </div>
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Good morning, autism.</div>
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She leaves off her redecorating efforts to look at me and make the sound that got her the nickname "Angry Kitten", and I offer her a cup of water, which she throws aside, yowling louder. I dig out her favorite breakfast biscuits and this is evidently what she wants, because she grins, snatches and runs with them. </div>
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The Monkey is ready for his juice and his iPad, and very politely asks for them. When I don't simultaneously produce both instantly, he bursts into tears and asks, "are you very very angry with me?" over and over. I do my best to reassure him, while getting his juice and his iPad, as he declares he needs a hug and a kiss, and I try to do everything at once. Happily immersed in his Angry Birds or Plants vs. Zombies game, he settles on the couch and is calm again. </div>
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Kitten has finished her breakfast and is digging in the cat food. I redirect her to the deck outside, where she runs back and forth, back and forth for almost an hour, while I make coffee and tidy the kitchen. </div>
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Monkey approaches, naked from the waist down, declaring. "I peed in the toilet! I peed on the floor, too. I pooped in the toilet!" This is pretty obvious, since he hasn't mastered wiping or flushing yet. It is a good effort though, in spite of the pee on the floor, and he gets a quarter in his reward bank. I help him clean up and wash his hands, put on clean undies and shorts to replace the ones he left in the puddle on the floor. </div>
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Kitten takes advantage of my distraction to go back to the cat food. She grabs double handfuls and lets the kibble fall through her fingers, delighted. She is angry when I interrupt her, but forgives when I turn on the water to wash her hands. She loves running water, whispering the rare words that she uses in context, "water water waterfall" on repeat. I again think that I need to get her a water fountain, one that she can't disassemble easily, so she can enjoy her waterfalls whenever she pleases without wasting water.</div>
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Daddy comes downstairs, goes to sit with Monkey and play his XBox. I ask him to change Kitten, and he does, while I get his coffee.</div>
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It is getting close to lunch time, so I assemble cheese and crackers. I add cucumbers to the Monkey's plate, and berries to Kitten's. They sit at the table, Monkey carefully assembling sandwiches out of the items on his plate, Kitten taking bites at random, mostly disassembling her food into tiny pieces and letting it fall to the floor. She jumps off her chair and runs to her toys, and I begin the sweep up. Monkey screams at me from his chair: somehow I have miscounted and he is one cracker short of completing his last "sandwich". He is beside himself and heading quickly into meltdown. I manage to forestall the worst of it with a quick addition of a cracker to his plate, and a head squeeze. He settles again, sobs decreasing, to finish his lunch by assembling, then abandoning the food, to go back to his iPad and his games.</div>
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Kitten is engrossed in her blocks, and I take the moment to go online, check my Facebook, my e-mail, Pinterest, my Etsy store. When she has been quiet for too long, I check on her, only to discover that she has knocked down the safety gate and got into my little workshop, and is dumping beads and buttons into a pile and doing her scoop and let fall again. I put the gate back up and reluctantly set up her rice table. I know that I will be sweeping rice out of everywhere, but so be it. </div>
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Monkey's iPad is out of power, and he is ready to go outside, so I plug his machine in, and he plays on the deck, reenacting his video games with his figures and Lego. I try to get some work done on my jewelry, checking on the kids regularly.</div>
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Daddy does some yardwork and takes the Monkey with him. This leaves me some time to work until Kitten reminds me she is still there by grabbing whatever it is she can reach that I am working with and throwing it. As I gather up the debris, she leans in and bites my leg hard, not quite breaking the skin through my jeans, but leaving a painful welt that will swell and bruise painfully. This is not the first time, and will likely not be the last. I don't know how to address this behaviour, all suggestions and attempts so far have been unsuccessful. She giggles and runs away. I finish cleaning up. I put some ice on the spot, and wonder if I am screwing up by not punishing or ignoring or whatever else I should be doing to keep this from becoming a major problem. So far, she is just biting Mommy and Daddy, but she will be going to preschool this fall, and I wonder if she will try to bite the teachers, or worse, her classmates. </div>
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Monkey is back in, looking for his iPad. It isn't charged yet, and he screams, "You hate me? You want me to die my iPad! You said you destroy my iPad!" Nothing will stop this one, he heads into full meltdown and I wrap him in a blanket and rock him as he wails. When it is over, he keeps saying, "sorry mumum, I not listen to you", and I try not to cry. </div>
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Kitten is back in the kitchen and I finally let Monkey go and find her scattering rice and spinning, head thrown back and singing "Twinkle twinkle little star". No big deal, and she is happy. </div>
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Daddy comes in, goes and takes a bath, then settles on the couch for more XBox with Monkey, and tells me to go take a shower while I can. While I do, Kitten poops in her diaper, and digs around in it with her hands. She isn't the smearer that Monkey was, but this is not too much better. I run a tub for her and get her cleaned up. </div>
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Monkey and Daddy are now watching TV, Monkey jumping on the couch then tearing across the house and back, hooting and flapping with excitement. I smile at his pure joy. He gets more exercise watching TV than most people do at the gym.</div>
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I make dinner, chicken and fries for Monkey, fries and cheese for Kitten, chicken, veggies and potatoes for Daddy and me. I put a bit of chicken and veggies on Kitten's plate, and some veggies on Monkey's plate, but I know they are unlikely to touch them. This is my good mommy habit. Sometimes they surprise me. </div>
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The kids are in a mood to dance, so I dance with them to "Happy" and "Everything is Awesome", and then it is time for bed. Daddy takes the Monkey, I take the Kitten, and the next hour and a half, we read, sing, beg, scold, and finally, they sleep. I could sleep too, but I really need to finish the piece I was working on, and the floor needs its daily full sweep and mop, and the dishes need to be done, and the laundry should be moved over. We put on a movie and I get done what I can. I end up leaving the dishes for the morning. I know I will regret it, but it is almost 11, and I am exhausted and need to sleep. </div>
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Reading this over, I think, what a dull person I have become. I used to read, to write, to craft more frequently, to keep up with a TV show or two, to leave the house now and then. With just Monkey, before the diagnosis, when there were just suspicions, I used to think that one day I would get back to being more like I was before kids. Then came the diagnosis, therapies, a second child, more suspicions, another diagnosis, more paperwork and appointments and constant vigilance. </div>
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I love my kids, more than I can ever express. It drives me crazy, trying to deal with my own diagnoses, theirs, and still find some time for fun and family stuff. This fall, when Kitten is in preschool for half days, and Monkey is in grade 1 (!), I will perhaps be able to find a little time for myself. But I can't fish too far in the future for happiness. Autism and ocd and anxiety and depression, they just ARE. I can't make them go away, like it or not. There are moments of joy, though, and we get through it with laughter, and tears, and a lot of stimming. </div>
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I have to find that joy, where we are now, day by day, not in some imaginary future when things are more settled or the kids are older, or I figure things out better. Day by day. This is our autism.</div>
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<span style="background-color: white; color: #666666; font-size: 18px; line-height: 29.25px;"><span style="font-family: inherit;">What does your autism look like? Link up a new or old post with myself or Jessica of <a href="http://dontmindthemess.com/" target="_blank">Don’t Mind the Mess</a> or let me know in the comments.</span></span></div>
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Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com2tag:blogger.com,1999:blog-8044176900969759259.post-66315465106012479632014-05-23T13:02:00.000-06:002014-05-23T13:02:05.283-06:00I don't want to be<div style="text-align: justify;">
<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;">I woke up today to a dozen or so blog posts to read, and several conversations online about being and raising autistics. There have been a few news stories and everyone has an opinion. </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; color: #141823; line-height: 17.563634872436523px;">Except me. I don't want to develop an opinion on any of them.</span><span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"> </span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;">I have reached parenting/autism information saturation. I no longer give a fuck what the latest self-advocate, researcher, parent, or organization says my kids are or should be or how I am fucking it all up. I don't even want to know if I am doing it right. I am so fucking tired of being lumped in with the willfully ignorant and delusional and deceptive, just because I have autistic kids, and talk about them.</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; color: #141823; line-height: 17.563634872436523px;">I don't want to play anymore. I am afraid to write, afraid not to w</span><span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; line-height: 17.563634872436523px;">rite, afraid of appearing to be apathetic or evil or just stupid. I don't want to talk to my kids therapists and teachers. I don't want to put everything I am or want to be, on hold indefinitely because my children have to be enriched, advocated for, nurtured, scheduled, accommodated.</span></span></div>
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<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
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<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;">I don't want to do therapies and work on skills and shit with my kids. I just want to be the mom and let them watch TV and jump on the trampoline and read them bedtime stories without emphasizing parts of speech and pronoun agreement. I don't want to make every moment teachable or provide educational opportunities every waking hour. </span></span></div>
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<span style="color: #141823; font-family: Georgia, Times New Roman, serif;"><span style="line-height: 17.563634872436523px;">I am just so tired of it all. I want to be a mom more like the mom my mother was. Sure it was a different time and situation and all that crap, but I don't care. I am not cut out to be a helicopter mom, to be an "attachment parent" who is involved in every aspect of their child's life. It isn't that I want to neglect them, I just want them to be able to amuse themselves, tell me when they need my attention, and generally do their thing without my input all the time. </span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;">I know I am not supposed to want my kids to be anything but what they are, but I have to say it: I want normal. I want average. I don't want to qualify my parenthood with "special needs". I want to send my kids out to the yard to play, or to school on the bus, or invite the neighbors kids to play without having to plan for days.</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;">I want to bitch about my kids without being accused of not loving them. I want to notice a silly or unusual behaviour and laugh or cry without being given advice on how to address, nurture or react to it. </span></span></div>
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<span style="background-color: white; color: #141823; line-height: 17.563634872436523px;"><span style="font-family: Georgia, Times New Roman, serif;"> I don't want to be the caregiver of special needs children anymore. I want to be the mommy.</span></span></div>
Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com41tag:blogger.com,1999:blog-8044176900969759259.post-84532200469539100642014-04-03T14:55:00.003-06:002014-04-03T14:55:54.932-06:00Show and/or Tell (please)Kitten has been crabby. She has been screaming randomly, going from happy to inconsolable in 3 seconds. She has been clawing her throat, head and pulling her hair. None of this is unusual for her, but the frequency has increased of late. Finally, yesterday she seemed a little unsteady on her feet, and actually, voluntarily, took a nap.<br />
Yeah, so when Daddy got home, we took her to the Walk-in-clinic and sure enough, double ear infection.<br />
I try to keep track of these kind of behaviours for this reason. It is hard to know when she is crabby because she is crabby, tired, hungry, thirsty, toddler angst, hot, cold, or, in this case, sick. She has no really functional language. She will occasionally make her wishes known by grabbing food off a counter, or stealing her brother's drink, but mostly, it is a mystery. If I should happen to guess wrong, and, say, hand her a bottle of juice, or a snack, she will fling the offending item, often at the nearest target.Then go in to full meltdown.<br />
She sounds pretty much the same if she is in pain, furious, or frustrated.<br />
"Behaviour is communication" But if the message is too obscure, or if Mommy is just not getting the message, communication is next to impossible.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtBvjQjdR1PcKu0H3UHOrWNlbGunlNr2RzCSEdbGPcBEQwvgQ7y-o9zSnq7UrzmbBwBnTSA06T7wQqSUJzWWxyy8Oq125z9hPPVkd5jacoPmFQCm5qXlxZRsOws1aLqHj6ibnT_u8qaJk/s1600/IMG_1005.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtBvjQjdR1PcKu0H3UHOrWNlbGunlNr2RzCSEdbGPcBEQwvgQ7y-o9zSnq7UrzmbBwBnTSA06T7wQqSUJzWWxyy8Oq125z9hPPVkd5jacoPmFQCm5qXlxZRsOws1aLqHj6ibnT_u8qaJk/s1600/IMG_1005.JPG" height="240" width="320" /></a>I went through this with the Monkey, I am sure we will weather it. Still, at least he had what we called "the imperious point" when he would stand in the room where what he wanted was kept, and grunt or keen loudly, whilst pointing in the direction of his desire. He didn't really direct this at anyone in particular, but it gave a clue about what was going on, what he wanted. Kitten doesn't do that. She just stands and screams. If there are words, they are scripted from Dora or some Disney show, and are generally not helpful to figure out the problem. She has shown no interest in ASL, PECS (except to chew off the Velcro backing), or the iPad apps that have helped Monkey.<br />
I think she will discover the utility of language in her own time. She will enter a special needs preschool in the fall, and will get the speech and language and occupational therapy that will help her get there. If she doesn't...well, I guess I am going to have to find some way to interpret those cryptic scripts and behaviours that are her current way of communicating, and somehow hope that she will meet me halfway.Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com3tag:blogger.com,1999:blog-8044176900969759259.post-80218876622128394422014-03-30T19:42:00.000-06:002014-03-30T19:42:09.759-06:00DwindlingFeeling small. Feeling...less.<br />
Ever since I was a child, I have felt a little less deserving of, well, anything, than those around me. It may be a function of my depression. A consequence of childhood bullying. A leftover from religious indoctrination. A result of emotional abuse. I don't know if the ultimate source really matters, but I don't know how to deal with it in the present.<br />
Mostly, I withdraw. I hold back, stop talking about how I am, how I feel, what I think. I still make small talk, crack jokes, exercise my sarcasm.<br />
As soon as I think people are tired of me, though, I stop. I stop commenting and liking and sharing posts on social media. I stop giving my opinion when I don't agree. No one gets the silent treatment from me, but I shrink back from the world just a bit more.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOCI9zLPSksH9BAqOyNQhLCAIxOezP4RLIO0kS2iBSmLPVLkiDY2MGMNI551nkxlu1-RWafN84xhmwZZCpq7Y7OBfT-GybfQJZkzyrnJ6GkZoARhTHo5RW0Yzf0siFZ2SfQwgfDL1jV0/s1600/paint.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOOCI9zLPSksH9BAqOyNQhLCAIxOezP4RLIO0kS2iBSmLPVLkiDY2MGMNI551nkxlu1-RWafN84xhmwZZCpq7Y7OBfT-GybfQJZkzyrnJ6GkZoARhTHo5RW0Yzf0siFZ2SfQwgfDL1jV0/s1600/paint.jpg" height="192" width="320" /></a>It is partly that I don't want to be a burden, don't want to seem whiny or weak. Don't want to join the hardship contests, or overshadow someone else's story or needs. I don't really like being the center of attention anyway.<br />
But at the heart of it, it is mostly that I don't feel that I deserve the attention, or sympathy, or help. Others have worse problems than mine. Other people are going through <i>real </i>crises. I am just a fake, a coward, I don't deserve help. I don't deserve love. I don't deserve anything. My needs aren't important, or urgent.<br />
And yet, I always talk about how everyone is worthy. Everyone merits respect, consideration, to be heard, to be loved. Everyone is needed. Everyone matters.<br />
How do I learn to feel that, really feel that? How do I make myself believe in my own worth?<br />
<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com1tag:blogger.com,1999:blog-8044176900969759259.post-50059540565377975582014-01-20T10:11:00.001-07:002014-01-20T10:11:41.271-07:00Hanging on a momentFriends of mine have been talking about Kelli Stapleton and how much we miss her. If you don't know that story, you can find it <a href="http://www.dailymail.co.uk/news/article-2413574/Kelli-Stapleton-jail-trying-kill-autistic-14-year-old-daughter.html" target="_blank">here</a>. Suffice to say, she got to a huge, ugly, despairing place, and made a colossally bad decision, that led to an unconscionable action that could have cost her and her daughter their lives, and has cost her and her family a great deal of pain and legal consequences. She has been vilified by many, but many of us in the blogging community who counted her as a friend have tried to understand the cause and will keep supporting her in her struggle to get past this, this terrible moment that changed everything.<br />
<br />
It hasn't been a great week, or month or whatever lately. I have had a migraine that registers a steady 5 spiking to 8 (for those who don't have a pain scale, I envy you) since before the holidays. I endure. I rally. I survive. I spend some of my time curled up in the fetal position under a blanket in a room as dark as I can get it, at least until the kids find me. I have days when I cry a lot. I have days when the pain leaves the rest of me numb and stupid, and I just barely function well enough to keep us going.<br />
<br />
The Kitten has taken to biting so hard she breaks the skin, even through clothing. So far she has restricted this to her parents, but only because her brother won't get near her most of the time. She has just started to show the head banging behaviours that her brother started to show around this time. It is really, really hard to watch her follow that path. I still don't know how to deal with it. The strategies we used with the Monkey were essentially, ignore unless injury is immanent, redirect, distract, restrain. He grew out of the worst of it, more or less, when he started to communicate better. It makes sense. The intense frustration of not being able to convey your needs in a way that others understand must be overwhelming.<br />
<br />
To get to what passes for a point, it has been tough. I won't say it is either more or less difficult than what others deal with, because I know plenty of folks who have it tougher, who suffer more, who are hurting and fighting and in the end, we are all doing what we can.<br />
<br />
Thoughts of suicide have crossed my mind. Hell, there hasn't been a time in my life when they haven't been there, at least in the background. Depression is a bitch. It robs you of energy, motivation, and hope. You find yourself reacting to things in the most negative possible way. I snap at my family, indulge in my own self injurious behaviours. I get into the negative feedback loop: I am crabby. I hurt people's feelings, I feel guilty, I get crabbier, my behaviour gets worse. I feel sorry for myself, then feel stupid and frustrated by my own self pity. I take that frustration out on the people around me, and on my own body. And so on.<br />
<br />
More than once, I have reach that moment of crisis, that crystal clear, knife edge of insanity that whispers, "They would be better off without you. It hurts too much to go on. You're an utter and complete failure, and there is nothing worth redeeming." That moment, that pain, that thought.<br />
If you were to look at me at that moment, and judge me by my state of mind, my actions in that place of pain and hollow emptiness, you would say I was a terrible human being, selfish, stupid, blind to the love and support that is all around me. And you would be right. But I am not defined by that moment. There is so much more to me than the person I am when I hit that ultimate low point. When I am outside of that moment, I do, and I am, some good in the world. I am as kind as I can make myself be, I care deeply and I love unconditionally. I have been incredibly fortunate, and am infinitely grateful for the intervention of friends and medical professionals who have pulled me through those terrible moments. But in that moment, wrapped in pain and failure, I am barely human. I am not capable of rational thought.<br />
<br />
That is the moment that took Kelli to a place that no one should go. That turned her, in the eyes of much of the autism advocacy community, and much of the rest of the world, into a monster. Somehow, that moment negates anything she was or did before it. From a fighter for her family, to a killer, a demon, a hater. ONE MOMENT. One act of despair. One terrible mistake. Why do we define a person by a moment, without any knowledge of their state of mind, or their character and actions before that moment? What gives us the right? I am not perfect or innocent. I have done things I am not proud of, and have thankfully been given the means and opportunity to make amends where possible.<br />
<br />
I won't judge people by their worst moment. I know what it is like to be there, and I know that is not me, and not them. I may not find their actions forgivable, or understand what got them there, but I will not say that losing sight of reason in one terrible moment defines them. <br />
<br />
<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com8tag:blogger.com,1999:blog-8044176900969759259.post-46362297722047189052013-12-24T13:52:00.001-07:002013-12-24T13:52:15.517-07:00Christmas with the Crazys: a holiday card letterThe holiday season is still a special time of year, even for an atheist like me. We do a Christmas Eve supper with friends, lots of presents for the kids, and this year we even have our own house, and our tree was up before the 20th of December! (personal record since the Monkey was born) Granted, I have trouble with the whole garland thing. This year it looks okay on the tree, but the stuff I put up around the house looks more like Christmas Creeping Kudzu.<br />
Anyhow, we have been trying to establish some holiday traditions and memories for our little family that don't involve poop, pregnancy or pets destroying the decorations. I like the concept of family traditions. I am not exactly terrific with the execution, but I do my best.<br />
The one tradition I just can't get behind is the Christmas letter. The purpose behind these seems to be threefold:<br />
1. To brag to people you hardly ever see about how incredibly awesome/talented/brilliant your children are, how successful/nurturing/amazing your spouse is, and how God just loves you a little more than most people.<br />
2. To subtly imply that everyone else should feel just a little cheated that their lives are not nearly as incredible and full of JOY and LOVE and SHINY THINGS as yours. Also, you are a better person, with more interesting and meaningful hobbies/jobs/friend than theirs.<br />
3. To give the impression that life is just great, when in truth it could be a stinking pile of feces.<br />
<br />
I have nothing in particular against the first one. I can brag with the best of them, when I have something to brag about. As long as you are doing it with the motivation of making someone else feel happy for you, or sharing your happiness. Mostly that doesn't seem to be the case. The letter becomes a kind of "Haha, my life is better than yours is!"<br />
<br />
This year, I have decided to write my own letter. Yes, I know it is last minute, and I am not gonna get anything more than eCards out at this point, but dammit, last minute is how I roll.<br />
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Dear Friends, Family and Whoever has a Sh*t left to give,<br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">It has been an eventful year, here in the Crazy household. From a summer vacation in exotic Vancouver, to moving house without use of sedatives, it has been non-stop excitement!</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> Thrilled to report, Kitten got her official autism diagnosis for Christmas! </span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> </span></span></span>She has been flapping and spinning for some time now, but we haven't been sure that it wasn't just "typical" toddler behaviour.</span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"></span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> So great to know that our darling girl isn't merely "typical".</span></span></span></span></span></span> </span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">I
have cut screen time down to 8 hours per day, and as challenging as
it is fill the extra hours with non-Dora related content, the increase
in destructive use of toys is SO worth it.</span></span></span> </span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">I have been <strike>coping</strike> <strike>getting along with</strike> <strike>tolerating</strike> enjoying the <strike>intrution</strike> visits of Monkey's therapists and so look forward to adding Kitten's to the daily routine.</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">And speaking of special, Monkey hasn't smeared
poop on the walls since August, and is almost always peeing in the
potty, just in time for his 6th birthday! He has just blossomed this summer, what with the speaking in sentences that don't quote Cars (tm)! When I can pry his iPad from his hands, he has even been known to say full sentences, like "Get out my room, Kitten" and "Want my iPad NOW, Mumum!"</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"></span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"></span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">Hubs switched jobs, and no longer has the <strike> excuse</strike> <strike> reason </strike>burden of a long commute to keep him from the bosom of his loving family. The children just shower him with affection when he gets home, sometimes even acknowledging his presence within less than a half an hour, even when they haven't had a potty accident!</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">Even the cats have been contributing to the joy of our household, considerately confining their <strike>malicious</strike> </span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> accidental </span></span></span>peeing and defecation to the kid's play area, where there are easily discarded floor mats and stuffed toys to piss on!</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> Me, I have just been busy, busy, busy, with providing enriching opportunities for the kids and cleaning up the debris. With my med change is coming up, I am just so excited for this new opportunity! Now I can use all the money spent on self medication with alcoholic beverages to replace the crap the kids have destroyed!</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> Merry Christmas! Happy non-denominational whatever!</span></span></span><span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> </span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">Kermommy</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]">Stay at Home Crazy</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"> What do you think? Totally full of spirit and inspiration, right? A new tradition in the making!</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0]"><span data-reactid=".r[4fh9e].[1][3][1]{comment599212440132698_599228786797730}.[0].{right}.[0].{left}.[0].[0].[0][3].[0].[0]"><br /></span></span></span>
<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com12tag:blogger.com,1999:blog-8044176900969759259.post-16142307606754782322013-10-26T10:35:00.000-06:002013-10-26T10:35:44.449-06:00My house, their rulesI think I have figured out why I am hating the home-based therapy model required by the government agency that provides funding for the Monkey's therapies. It has been bothering me for a while, and while Monkey has made amazing progress and enjoys most of the sessions, I have been feeling more and more resentful as the weeks wear on. I feel guilty about it, of course. What is my problem? After all, this isn't about me, this is about him.<br />
Well, it isn't, but it is.<br />
The point of requiring therapies for pre-K and Kindergarten special needs students is, according to the funding agency, to help parents to develop coping strategies and methods of accommodating and working with their special needs child in the home. It is about educating the parents to deal with behaviours and challenges. All goals are supposed to be more "family focused" than "child focused".<br />
I get this. The whole educational system is designed for the child. The therapies in the home are supposed to support the family centred model as a way of making sure the child and his siblings are in the best possible environment to learn and interact.<br />
So it is about me. And I hate it.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxpwviI6AxmyUG9CYF-jTzhUWU_eoZJY91Fl5F8iI9-W1IiS8BipoUzlWJWsOUjr15O6vYKkuklCDwmi-tq6tGe96J1s4cUrB_Pk5c-nNXF4d7Dr5XmpUJBNAwjpHBIDcnpq6N37UV4VQ/s1600/040.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxpwviI6AxmyUG9CYF-jTzhUWU_eoZJY91Fl5F8iI9-W1IiS8BipoUzlWJWsOUjr15O6vYKkuklCDwmi-tq6tGe96J1s4cUrB_Pk5c-nNXF4d7Dr5XmpUJBNAwjpHBIDcnpq6N37UV4VQ/s320/040.JPG" width="320" /></a>I hate having to be fully alert and ready to deal with people first thing in the morning. Petty, maybe, but I have never been a morning person, and I resent having to be nice to people I don't care for before I am fully awake. I know his kindergarten is in the afternoon, so they have to do the therapies in the morning, I just wish I didn't have to have them in my house.<br />
I have having to make sure the whole house is clean and tidy and organized every day, to the standards of the therapists and their bosses. I hate that when I miss a last vacuum of the kids' rooms in the evening, or if my little crumb factories have toast for breakfast, and I don't manage to sweep it all up by the time his people get here, I get snide little remarks, or those oh so helpful "just so you know, his carpet has food all over it" or "there is a sticky spot on the floor over here" type of comments.<br />
I hate most of all that I have to welcome a parade of strangers into my home, as if I wanted to have every aspect of my decorating and housekeeping and parenting on display for people I don't particularly like, but have to tolerate. I have to be polite and even kind to them, even though I don't want them here.<br />
It isn't even that I dislike them in particular. Most are nice enough, and mean well. But I don't get a choice. They are rarely people I would choose as friends, and certainly not as people I would invite over every damned day when I am at my least social.<br />
I feel guilty and a bit ungrateful for these thoughts and resentments. I'm happy my little monkey can get the help he needs without it being a major financial burden in these early years. I just wish it didn't have to be at the cost of making my home the therapists' workspace.<br />
<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com5tag:blogger.com,1999:blog-8044176900969759259.post-58653290489954519182013-10-02T08:31:00.001-06:002013-10-02T08:31:11.849-06:00Sometimes I forgetSometimes I forget.<br />
Day in, day out, I get used to the way things are.<br />
I forget that "most kids" at his age don't line their toys up in patterns all over their room, and cry real tears of anguish when they are accidentally disturbed.<br />
I forget that "most kids" don't howl, flap, jump and run circuits of the house when they are excited about the show they are watching.<br />
I forget that "most kids" at his age can hold a pencil, use a spoon, pull a lever, push a button, squish play dough in their hand.<br />
I forget that "most kids" at his age can kick a ball, run without stumbling, carry something without crushing or dropping it. <br />
I forget that "most kids" at his age can sit and eat in a restaurant without climbing under the table of the booth beside them, can wait for their food without keening in distress and punching the seat.<br />
I forget that "most kids" at his age don't deliberately poop their pants, then play with their toys in it.<br />
I forget that "most kids" his age can talk easily, in full sentences, to almost anyone.<br />
<br />
Then we go to the playground, or the mall, or a restaurant, and I see the other kids. Kids smaller and younger, who do all the things kids their age usually do. Kids who seem to be listening to their parents, enjoying a snack, playing appropriately.<br />
Then I remember. He isn't quite like them. He can't do what they do. He doesn't act like they act.<br />
He isn't "most kids".<br />
It is always a little shock, that "normal" exists most places. But not in our house.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-vFiwO1NcG-jYyXul2AruSuMrv3IJ4df1CQsRCMGq5zY-EzeES7RsnBOo8EU7UwA5TBIy8m_t2VEeRowbgsYqv579yp5coxYG82pux73xjoAitXYIrMqMQtGuuMsHb7IOnW83WzDl1KM/s1600/ewan+001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-vFiwO1NcG-jYyXul2AruSuMrv3IJ4df1CQsRCMGq5zY-EzeES7RsnBOo8EU7UwA5TBIy8m_t2VEeRowbgsYqv579yp5coxYG82pux73xjoAitXYIrMqMQtGuuMsHb7IOnW83WzDl1KM/s320/ewan+001.JPG" width="320" /></a></div>
In our house, normal is therapists, accommodations, precautions, damage control. It's always being careful, vigilant, aware. Never careless or resting without consequences.<br />
Sometimes I remember. <br />
Some days that is okay with me.<br />
Some days it hurts to see him not fit in. <br />
Some days I am just too tired or busy to think about it.<br />
Most days I just wish I could forget "normal" is out there, and is not always a welcoming place for me and mine. I know I am not supposed to want him to be different, to be anything other than who he is, where he is right now.<br />
Most days, I just want to be normal. Whatever that means.<br />
And on good days, I forget.<br />
<br />
<br />
Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com3tag:blogger.com,1999:blog-8044176900969759259.post-29657953557028640542013-09-06T15:02:00.000-06:002013-09-06T15:02:28.956-06:00What I see.I tried not to write this. I tried to just let it be. I watched as my friends (my fellow autism parents, my companions in mental illness, some on the spectrum, some not) discussed, argued and mourned the actions of a mother in crisis.<br />
She made the wrong decision. She not only decided to end her own life, but that of her teenaged daughter. That was unequivocally, undeniably wrong.<br />
I am angry at her. I am angry at the systemic destruction of her ability to cope by an unfeeling, unforgiving bureauocracy. I am angry at the knee-jerk reaction of the haters, those who immediately use this as fodder for their hatred and an excuse to vilify all parents of autistic children. I am angry at my own guilt and shame and frustration.<br />
I am also sad. Deeply, inexpressibly sad. For all of this. For Issy. For Kelli. For their family and friends. For my communities of support. And yes, I am even sad for myself.<br />
See, I have attempted suicide. I have been at that point of guilt, and depression, and despair. I can't speak to why Kelli did this, except that she was obviously at that terrible place. It isn't a state that makes for clear thinking or logical actions. She made the wrong choice, the wrong decision. SHE WAS WRONG. I don't question that at all. It is unbearable that Issy has to suffer for this, but I know that Kelli will be punished, and she deserves to be punished for her terrible action. <br />
I mostly need to know why. What happened? Kelli is an incredible fighter, a good mom, a compassionate person. She has advocated, suffered, and laboured to see her daughter reach whatever potential she has. She is also a murderer, a suicide, a coward, a person who gave up on herself and her child. Issy is a violently aggressive, autistic teenager with poor control, and has physically attacked her mother countless times. But Issy is a fourteen year old girl, who by all accounts loved and trusted her mother. A person who did not deserve to be hurt, and who does not deserve to die. <br />
When I ask the question, how can we stop this from happening again, the answer from the haters is "Don't kill your kid!" Gee, why didn't I think of that? By not killing my kid, I can assure myself that no child will be harmed by their caregiver, ever! This kind of thinking is deadly. How do you prevent this situation from happening again? How do you protect the vulnerable, while making certain that parents won't come to the point of seeing this as the only course of action, to kill themselves and their child? This isn't the case of a monster, or a psychopath, or a violent criminal killing someone out of hatred, no matter what the haters see.<br />
<span data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][1]"> </span><span data-ft="{"tn":"K"}" data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][2]"><span data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][2].[0]"><span data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][2].[0].[0]">See, I don't hate very well. Maybe I just use up all my hate on
myself. I have too much empathy, sympathy, whatever the fuck it is that
lets me put myself aside and see where other people are coming from. I don't hate the haters, because I can feel the pain and terror and rage that drives them. I don't hate Kelli, because I can see the despair and helplessness that drove her. I
just hate that it has to be this way, when everyone wants the same
outcome, that no child is harmed, that no human being gets to the place
where harming their child seems like the only recourse. So while the haters scream their anger to the world, and call for the most brutal of punishments, the most merciless of actions against Kelli, I will continue to look for that why. I will be as great a support for my fellow travellers as I can be. I will do what I can, because this wasn't the heartless act of a monster. It was the desperate, destructive, terrible act of a human being. And I can't bear to see it happen again.</span></span></span><br />
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<img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNN9hX261MPSECGNv5K9XgJhBt1KCg9O6pyYGzW3nsN6RitQyuml-gsA914vu7DMAaRTk8riWKmjbMQt3GNFQQkCJCuOmvPzpxVXw-hIX_gWwFNlQuvjdeNC-6wZ78AzY0n3enRoBFF-U/s640/1235499_414081572031598_2006510293_n.jpg" width="640" /></div>
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<span data-ft="{"tn":"K"}" data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][2]"><span data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][2].[0]"><span data-reactid=".r[5dq44].[1][4][1]{comment588166637892506_588249587884211}.[0].{right}.[0].{left}.[0].[0].[0][2].[0].[0]"> </span></span></span><a href="https://fbcdn-sphotos-g-a.akamaihd.net/hphotos-ak-prn2/q71/s720x720/1235499_414081572031598_2006510293_n.jpg">Real Husbands of Autism on Facebook</a> <br />
<br />Kermommyhttp://www.blogger.com/profile/01825026805434550148noreply@blogger.com2