Friday, 15 April 2016

Service (or not)

Is it too much to ask that a service provider put my child before their convenience?

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!"

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. 

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 "family centred" 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. 

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.

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? 
No question, I hate the exclusively in-home therapy, family centred approach, but I will endure it for my child to get the help she needs. 

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. 

Tuesday, 5 April 2016

On awareness

Last 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.

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."

My son stumbled off the bus (his coordination is still problematic), and I commented, calmly, "He is autistic," as I steadied my son.

She replied, "Well, yes, you can see that he has problems. His poor mother."

I replied, "My son is autistic too."

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."

Her daughters jumped off the bus, giggling like mad, and we parted ways, but it left me a bit out of sorts.

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.

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?"

It isn't that folks are deliberately mean. It is just so discouraging that "awareness" is still lacking with most people.

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.

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.

Tuesday, 1 March 2016

Social Worker's Month

It is, I am told, Social Work Month.

A lot of special needs parents and adults have had interactions with this group of overworked, underappreciated professionals. This is one of mine.
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.
As I have mentioned before, all government funded therapies for early intervention are in-home.
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 I have failed)
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.

It wasn't.

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.

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.

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.

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.

And then he stopped me and asked, sounding irritated, but not with me, "Hold on. Your son has autism?"

"Yes. He is at his special needs preschool right now."

"Somehow the reporter failed to mention that." And he sat down, and talked to me.

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.
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.
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.
He told me we were doing a great job.
It was the first time anyone had ever said that about my parenting.
That I wasn't failing.

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.
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.
They are criticised for not being perfect, for the flaws in the system that make their jobs insanely complicated and sometimes nearly impossible. 
They get frustrated and upset and angry, but they are professionals, and handle themselves as professionals.
The majority of social workers that I have known are dedicated, caring, and determined people who are genuinely interested in helping.

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.

Monday, 1 February 2016

Positive notes

Looking 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.

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.

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.

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.

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.

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.

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.

There is hope.

Friday, 11 December 2015

Epiphany: It's all my fault. Again.

I don't know how I missed this before. I don't know why it surprises me.

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 My house, their rules) That hasn't changed.

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. 

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. 
Now I am being judged on my mood and attitude at every single session.

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. 

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. 

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. 

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.

Monday, 19 October 2015

What I learned in grade school

People 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.

My memories of grade school aren't like that.

I was bullied. I was abused. I hated myself. I felt guilty, afraid and worthless.

I didn't believe that the future would be any different.
I would never have believed anyone who told me it would get better.

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.

  1. 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. People will not always like you, but they have no excuse for bullying you. 
  2. Sexual abuse isn't about you either. It is not your fault. 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.
  3. 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. If no one is paying you to do it, you answer only to yourself. 
  4. 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. Take what joy and learning you can from everything you do, even if you suck at it.
  5. 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. How you compare to others really isn't important. 
  6. 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. If you take joy in what you can do, what you can't won't matter so much. 
  7. 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. Don't let your job define your character, or your wage define your worth. If you do manage to make enough at something you love, count yourself lucky. 
  8. Nothing good lasts forever. Enjoy the moment, let go of it, keep the memory. Nothing bad lasts forever. 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.
  9. 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. You can't find help without admitting you are hurt. 
  10. 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. It just is what it is.
  11. 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. You  are worthy. You are deserving. You matter. 
  12. It really will get better.  It will never be perfect, but it will be better. 
  13. You will find people who don't want to change you, but will love and accept and even admire you for who you are. 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. 
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.
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. 

Friday, 9 October 2015

Purposeless Functioning Levels

Several 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.

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?

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".

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".

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?"

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.

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?