Give a little bit

 This was my Facebook status on my page yesterday:

Today was busy. I managed to get to Michaels and the Petsmart after the Monkey got on the school bus and I dropped the hubby off at work so I could use the car today. Got home, put the Kitten in the living room to watch a little Treehouse TV, and went outside to shovel the walk.
My back is behaving itself today, I don't have a migraine, and no joints aching. The weather is snowy but not too windy, so the cold isn't unbearable. So.

I started shoveling the sidewalk, and finished the 20ft or so that fronts our house in about 5 minutes. Then I noticed our neighbours hadn't made it out to do theirs yet, so I did that too. And I kept going. To the corner. About 8 houses down. It felt good. I have had a lot of people do me small kindnesses that made my day a little brighter, and I don't want to take that for granted. I know I notice the little things when I am deep in a low, and a smile when my mood isn't so good can make all the difference.
So today I shoveled a few people's sidewalks. I know it isn't much, but I hope that when people see that someone has done a little something for them, that they think about it when they have the opportunity, the ability, and the time to do a little something for someone.

 

It was nice because I was feeling good enough physically to do it. I like that I was able to be the giver today, because I so often am on the receiving end.

I am putting this here, because I realized what I was feeling was a need to connect to the world as a human being. To go beyond the special needs mom, stay at home housewife role, and feel like a part of the big wide world again. 

What I want now, and what I hope you will help me with, is other people's stories. If you have done some little thing for someone without expecting recognition or reward tell me about it here. I need to renew my belief in human beings. Whether you think of these as Random Acts of Kindness, as Paying it Forward, Karma, whatever. Tell me something nice you did for no particular reason. If you can't think of anything, then do something today, and tell me about it. You have helped me so much with your kind comments and support. Who else have you helped?

Resenting normal

I have been reading a pile of blogs about who has the right to talk about autism, and who autistics and parents and caregivers should and do trust on the subject. I feel like a wanderer in the wilderness. Apparently, I am the NT person who cannot be relied upon to describe autism. I am "normal". Terrific. I am doomed to never understand, nor relate to, nor assist any autistic person, presumably including my son, possibly also my daughter. Perhaps if I defer to an authority who is autistic, I may be permitted to assist, ever keeping in mind that I will never be able to truly understand what my children are going through. It is similar to the concept that a man can never understand or be an authority on women's issues, a straight person can never relate to GLBT struggles, a Caucasian can never put themselves in the place of a person of colour.

So I can talk about my own, personal experiences as a white female straight married atheist depressive. I can never be an authority on any other condition or person. Do I sound resentful? Frustrated and upset? Do I even have the right to feel this way? After all, for the most part I am a part of the privileged majority that the autistic person feel excluded by, aren't I?  I don't want to sort my friends by their differences, into categories of opposition. I don't want to be ignorant, or hurt people by assuming I have some idea of their trials and triumphs. I feel useless and weak often enough.

Are they right? Am I just a condescending, delusional and misguided NT who is doing more harm while trying to help?

I have failed.

Monkey's therapy provider cancelled his therapy yesterday without any real explanation. I assumed someone was sick or otherwise unable to make it, and didn't think too much about it, other than reorganizing my day around other activities.

My son's therapy provider called this morning and asked if I was available for a visit this morning. I am home all morning, so I said yes, and tried to tidy up to get ready.
The program coordinator and the family worker came to the house today to meet with me. They talked about setting up services and respite care and whatnot. All very polite and kind. Then the PC told me what I gather was the main reason for coming to see me today, at short notice.

 Apparently, his therapists had complained that the floor and carpet in our living area were not clean, and because they work mostly on the floor, they were getting crumbs and cat hair and "stuff" on their clothes. They noticed the smell in Monkey's room, where he has been indulging in fecal smearing of late, and the carpet in there isn't very clean either. They talked about the mess from having pets and possible issues with cat boxes and contact.

The FW made some offers of pamphlets and contacts, and then some pointed remarks about how if I got some respite care for Monkey, perhaps I could take the time to take care of the hygiene problems they had pointed out. She mentioned that they wanted to help me get the situation under control before it became a crisis. That they wouldn't want to involve child protection services. Unless absolutely necessary.

The PC then asked if I was okay with all this, as she knew I was feeling overwhelmed before they told me this. She assured me that they didn't want me to feel threatened or upset, that they had to make sure their people were in a safe working environment. That she wouldn't send anybody out today either, but that they were sure I could  get the place up to standard and ready to go for Monday, when she would be dropping by to see if all was done.

I managed to stay in control while I told them that I would get it done. That I was fine with it. That I would take care of things.

I can't seem to stop crying. I am a failure as a housekeeper, and I know I suck at it. I knew that before. I have tried really hard to get the place clean and comfortable so that his therapists could work with him here. I guess I am just not good enough. I have failed. I have failed so badly that my ability to provide a safe environment for my kids is in doubt. My in-laws are right. I am a lousy housekeeper, a lazy, unmotivated, incompetent person, I don't care enough about my kids to make more of an effort.

I want to shrivel up and die. I want to give up, even more than before. I haven't lost it completely yet. I met Monkey's bus, got Kitten cleaned up and fed them both lunch. For their sake, I am going through the motions of being a useful person. But I feel like I have already lost the game. Once again, I am judged and found wanting. This time by people who I need to please. I am a failure.

*Update* Thank you to everyone who posted in the comments with your support. I am doing better this morning, and dealing with what needs to be done. I am so glad to be a part of this community of bloggers. My husband reminded me of something: none of Monkey's therapists or workers have kids, let alone kids with special needs. While they work with these kids, most of them are fairly young, and they really don't get it. I got my feelings hurt because they don't seem to see the challenges, or that I am doing my damnedest to keep everyone happy, healthy and safe. Hopefully, this will pass. Worst case scenario is that we will be looking for a new service provider. I would rather stay with the one that Monkey knows, but we will do what we need to. For me, the worst fallout from all this is that my boy lost two days of his therapy because they didn't approve of my housekeeping. Whatever my hurt feelings are, that is a tangible loss from what is at the root a service that we pay for. So, I take a deep breath and move on. I am going to take the cleaning advice and see how it goes, maybe get back on the FlyLady wagon, and enlist my household to give me more of a hand. Thanks again to you all. It really is good to have people I can vent to who really get it.

Liebster Award Winner! Yay me!

   So, Tree the Snake has honoured me with the prestigious and exclusive (I am assured) Liebster Award! This means I have to post some stuff. Thankfully, there is a protocol established here, so lets line it up.

1. Thank the Liebster Award presenter(s) on your blog.
2. Link back to the blogger who presented it to you
3. Copy and paste the award on your blog.  
4. Present the award to 5 or 11 blogs that deserve to be noticed.
5. Let them know they've been presented with the Liebster Award.
6. Answer 11 questions posed by the presenter. 
7. Eat some dark chocolate.  It has anti-oxidants in it.  It will cure what ails you.  Unless you are allergic to chocolate.  Then skip 7. 

Number one: Thank you to treethesnake.blogspot.ca for presenting me with this incredible honour and a kickstart to getting a blog post written.
Number two: I am pretty sure I did that. I hope. Twice. 
Number three: see number two.
Number four: Lemme see, who am I gonna pick?
Bacon and Juice Boxes
Parenting with Asperger's Syndrome 
Holdin' Holden 
Confessions of an Aspergers Mom 
My Life With my "Au"some Son
I will admit, I partly chose so as not to copy Tree the Snake's list, but all of these blogs are awesome and well worth reading, written by awesome people who deserve the recognition.
Number five: Okay, working on it.
Number six: Hm, I believe this is an add on question, but what the heck.

1.  What, if anything, is completely off limits as far as blog topics for you?
2.  What is your favorite sound?
3.  If you could go back and talk to your 15 year old self, what one piece of information/advice would you share?
4. How did you end up doing what you do today? (If you're a SAHM, what made you choose that vs. going back to work? If you work a paying job, how did you end up in the field you are in?)
5. What is your guilty pleasure?
6.  What's your favorite candy?
7.  What prompted you to start your blog?
8.  Do you have a favorite food? If so, what?
9.  If you had to pick 1 thing to change about yourself, what would it be?
10.   What physical attribute do you like most about yourself?
11.  Do you still live where you grew up? If not, how far away are you from your hometown?

 1. I try not to get involved in politics, and I try not to get caught up in the controversies of Autism treatments. That said, I wouldn't call it off limits. There are topics I don't bother with, because I don't think it would be interesting or useful to me to blog about them. I try not to over censor myself, but I rarely use curse words in my writing. I do enough of that in real life.
2. Wind chimes. Almost any wind chimes.
3. Tough one. I was suicidal and isolated during my teen years. I would love to tell myself that the high school years would be the worst of my life, not the best. That there are tough times to come, but there are wonderful things too. It gets better.
4. Well, you see, when a man and a woman love each other very much, they might decide to have a baby... Child care is just too bloody expensive, and I worked mostly assorted menial retail wage slave type positions. I am fortunate to have a husband who makes enough to support us without the second income, and housemates who share the rent with us. I have a little jewelry making business on the side, but I wouldn't call it an income, per se.  At least, not yet.
5. Watching Hoarders. 
6. Reeses Peanut Butter Cups
7. When my son was diagnosed with autism, I started looking for online support and advice, and found the ASD and SN parent blogger community. Homestyle Mama  and Parenting With Asperger's Syndrome were and still are my inspiration and heroes.
8. Is ice cream a food?
9. I would like to like myself. 
10. Is it bad to say my boobs?
11. I have moved way too many times. I was born in Regina, Saskatchewan,  and lived in several cities in my early childhood. From age seven to twenty I lived in Calgary, Alberta. I spent fourteen years in the Lower Mainland, mainly in Vancouver, BC. This was followed by a nightmare of moves for school, my husband's work, and family.  I live in Calgary again now. And I am hoping to only move again when we can afford to buy a place of our own.

So, the challenge and awards are passed on...

Singing in the rain, or something

So, it's raining today. My little Kitten decided that 4:30 am was a great time to wake up. I left the boys in bed (the Monkey evidently joined us at some point last night) and got up to turn on the TV to Treehouse and deposit Kitten in her accustomed place with juice and some Cheerios. I did the dishes, made the coffee and waited for the sun to rise, feeling cranky and tired, wishing I could sleep all day.
Then I went to the living room to join my daughter, and she gave me an enormous smile and pointed to the TV, saying "doa doa, bapa!" (For those of you who don't speak toddler, this is "Dora, Dora, Backpack!") Her smile was irresistible. I went in for a cuddle and she said, "Ticka ticka!" so I tickled her and made us both giggle. The sky lightened and my mood began to improve.
Then Monkey came out, cranky and wanting to go back to bed. He got a cuddle and a tickle too, and settled down with a Pop-tart after rejecting the peanut butter sandwich I had ready for him. Par for the course, at least he ate something, never a sure thing in the morning.
My hubby emerged from the bedroom, ready for work, with clothes for Monkey. I got our boy dressed, then looked at the clock. 7:25. I begged my Hubby to let me get a shower, and he graciously gave me 5 minutes. He doesn't have the one to two hour commute anymore, having switched to school about fifteen minutes away, although still teaching the same category of students. It is so much easier in the mornings this way. So I got my shower (bliss, even hurried) and felt almost human by the time I was dressed and brushed and moisturized.
Monkey was already at the door, champing at the bit, dressed in his Thomas the Tank Engine boots, and his shiny yellow slicker that his Gramma got for him. He was so excited about going out in the rain that I found myself smiling again. He loves the rain, puddle jumping, mud pies, the sound the rain makes on his hood. The bus came a little late, but he didn't mind.
So here's the thing: I hate mornings. I hate getting up early, I can not stand the groggy feeling and lack of cognition that plagues me, having to function when I just want to sit and stare at the wall until my brain wakes up, having to act cheery (for the children! phbbbbbt), make conversation with Hubby. And I hate rain, the darkness and gloom, the wet, the mess.
 But today, I stepped into my kids' worlds.
My daughter, the morning baby, the early, happy riser.
My son, delighting in the prospect of rain, school, and the bus ride.
I am not by nature an optimist, although I do try. Today, though, today I feel like the world might be a good place to be after all. If my darling girl can greet the day with enthusiasm, if my awesome little man can love the rain, maybe I can be a part of it, can learn to see it through the eyes of these crazy little monsters that I adore so much.
Today, depression and the dark side of autism will be overcome for a while.
Today, I will sing along with Dora and Kitten.
Today, I will go jump in puddles with Monkey.

Home to the heart of chaos...

Well, the vacation is over and I am beginning to realize some things.

ONE: I am not cut out for camping trips without showers that last more than 3 days. 6 days of filth, smoke and bugs is just not within my tolerances. Not just me, but my children smelling like used diapers and lakeweed laced with goose poop is enough to drive me nuts.

TWO: The generosity of my in laws in taking my Monkey Man for a week must be balanced with the incredibly difficult recovery of schedules. I am not the most organized person, but keeping Ewan on at least a tentative wake up/mealtimes/bedtime routine is vital, and the in laws are just not interested in attempting to keep him consistent. That it is a challenge is not something I contest, but he is so much happier and easier to be around when he has a decent sleep schedule, even if it does take major effort to get him to bed on time. We really need to work on meals again, too, as his eating habits have slipped again. I am tired of having a six week minimum recovery from vacations.

THREE: I am slipping into major depression again and need to find a therapist again. I get so sick of first visits, though. I hate explaining my history, my present issues, my meds, my family, my kids again to yet another doctor, only to find that I can't work with them, or that the doctor is retiring, moving, or for other reasons won't be around for the long haul. I hate changing medications and going through the withdrawal/side effects/evaluation cycle again and again with little or no gain.

FOUR: I really don't like myself much, and I don't want to pass this to the next generation. I feel like a whiny little brat. I always say I get tired of the screaming and crying, but these days it is coming from ME.

None of this is new. I just can't seem to cope with anything and it is driving me crazy. Crazier. Whatever. I can't seem to recharge, and I don't know what to do about it. My house is an appalling mess, and Monkey's in-home therapy starts on the fourteenth. I am not ready. I don't have two clear areas for him to work in, nor is my kitchen set up for his OT. I want to sit in the closet and scream and cry and have a little meltdown of my own.

I can only hope it passes. I need energy, dammit. I have people counting on me. I have me counting on me. I can't give up, but I really really want to.

The In-Laws and outs of vacation for Monkey

Sent the Monkey off to my husband's parents for a week alone with them before we join him with the Kitten. They have done this several times, with reasonable success. He is generally good with adults, and loves his grandparents dearly. I worry a little of course, but not excessively. They accept his diagnosis, even if they don't fully understand what it means. Hell, I don't either, but we all do our best to help him with the tough bits, and get him where he wants to go. It is also nice to have a break from the constant supervision my little man requires, and the cleanups that my lapses of attention inevitably lead to. I feel vaguely guilty about feeling relief, but mommy guilt is a specialty of mine, so I am used to it. I appreciate that my in-laws are willing and able to take him for these times, and he really enjoys the attention.

There was a call from the SiL (Hubby's sister) soon after Monkey and Gramma were supposed to arrive, with the urgent tone she is so good at, telling us that there was a delay getting off the plane (a door was jammed) and Monkey was, in her words, "freaking out". So Hubby called his mom on her cell. What exactly he was supposed to do was a mystery to me. Maybe he thought he could talk to Monkey on the phone and distract him. At any rate, by the time he called, Monkey had finished his meltdown, and was fine. It turns out he had a relatively minor meltdown because he thought, when they made him sit down and put his belt back on, that they were going to fly back home, and he wouldn't see Granpa. Gramma had called Granpa to let him know there was a delay, he had heard Monkey having his meltdown, and for reasons I just don't understand, he felt the need to call SiL, who felt the need to call us.

This is exactly the worry I have about visits with Hubby's family. His dad can be bitter and manipulative, and often tries to stir up trouble between the siblings and tends to stretch the truth or twist it to accomplish this. SiL takes everything he says and reacts exactly as he expects, in turn she works herself into a frenzy of nerves, then usually calls her mom or Hubby to proceed to work them up into overreacting with them. She succeeds with her mom far too often. I can usually talk Hubby down if she gets him stressed out, but it is wearying to both of us. She doesn't limit this to her father's influence of course, and still stresses over her own kids and life, and passes this to her family, who spin it back and everyone panics or gets angry or whatever else. She believes she has all of the solutions to our problems with Monkey, too, most of which she gets from the internet. This drives Hubby up the wall as he is a special needs teacher with a master's in special education, and works with severe ASD kids every day. He doesn't claim to know the answers, but he has heard most of the alleged cures and treatment, seen most of them tried by the parents of his kids, and is pretty well informed of what is solid and what is bull or snakeoil. She also has plenty of more general parenting advice for us and never hesitates to tell us her concerns over our kids' development. Sigh.

Don't get me wrong, I understand that she believes she is helping. I try to be polite and not too dismissive of her when she voices these concerns. And Hubby's family loves Monkey and would never deliberately say or do anything that would hurt or belittle him. I don't know how much he understands or takes in of the drama that is going on around him. My concern is that he will be made to feel less than perfect as a person because he is ASD, and that his delays are somehow his fault. I can live with the frustration that comes with the criticism and oh so helpful advice from his family. I won't tolerate anything that belittles or marginalizes my son. Hubby's dad is a bully. I won't have him bullying my son. SiL is a drama queen. I won't have her making my son feel like he is a tragedy or broken. Hubby's mom is a good person, but is very much an enabler for her family as she tries to keep everyone satisfied.

I don't think I am a perfect parent. Hell, I can only hope to be an adequate parent for my amazing kids. If I need help I ask, and sometimes even take the advice I am given. I worry plenty, and overreact occasionally, but overall, I try to remain calm and focused for my kids. It doesn't always work out, but it really doesn't help to have well meaning (or not) folks fanning the flames of panic and frustration.

I just hope I am not a bad person for hoping he has a few really good meltdowns for Granpa.