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Wednesday, December 14, 2016

Thoughts during the calm

Calm Janey
My friend Julie said to me recently that it seemed like life with Janey was evening out as time went by.  That struck me as a very good way to put it.  The last year with Janey has mostly been a year of evening out.  Her lows are higher, her highs lower, and she spends more time in the middle.  There's still tough days, and still amazing days, but most days are..days.  Which is good.  Which is very good, actually, compared to some of the hard times. Whatever it is---her getting older, her now being essentially an only child as her brothers are both away at college, the right combination of medication, a stable school situations, our changes in attitude and strategies---life with Janey is much smoother than it was a few years ago.

That's why it seems strange to me that more than I have in years, I have been thinking about tough questions.  Why is Janey autistic?  Why, unlike so many kids with autism, has she made so little progress with speech and academics?  Why is it so hard to get help with her?  I guess when we are not in crisis mode, but also not being blinded by exciting new things Janey is doing, there is time to sit back and think, and sometimes the thinking is hard.

I never used to dwell much on why Janey is autistic. A lot of that is because there is no shortage of potential reasons.  Pretty much every time a new idea comes out as to what causes autism, it is something that applies to Janey.  I had a terrible pregnancy with her, with a severe allergic drug reaction at 12 weeks.  Tony was, at age 42 at the time of her conception, an older father.  Genetics can't be ruled out, and auto-immune disease run rampart through both sides of the family.  We live near a busy street, and pollution certainly could be a factor.  I could go on and on.  But still, I wonder. Was there something I could have done differently?

As for why Janey has progressed so little, that's harder to say.  And more heartbreaking.  So, so many little kids that start out at the same place as Janey make so much progress.  They have the same resources and teaching Janey did, and now they can talk easily, can read, can write, can function at a hugely higher level than her.  I love Janey just the way she is, but for her, I wish she had made the leaps some kids do.  The evening out applies to her progress, too.  She talks less than she has at times, her toilet training has regressed to less than it was, she is in some ways more affected by autism than she was at 6 or 7.  I don't know why.  The same question comes up here---was there something I could have done differently?

And why, WHY, is it so hard to get help with Janey?   Why does it seem that those charged with helping children with special needs don't understand children like Janey, children whose needs are fairly extreme, and because of that, children in families that need help so badly?  As an example, over and over this holiday season I've heard about ToysRUs and Target and so on having special "quiet" shopping hours for kids with autism.  And although it probably sounds petty and mean, I think "Bah Humbug"  That is an example of the kind of help that is no help at all to someone like Janey.  She would not be quiet for a quiet shopping time.  She doesn't understand shopping for toys.  She has no desire for toys.  And most of all, taking her shopping is NOT a source of help for us.  It's more stress, not more help. What would be a million times more helpful is if the stores somehow arranged for someone to actually watch kids like Janey so Tony and I could shop.

I know there's money out there to help kids with autism.  I've talked with people working for various agencies.  But the money seems to go into a couple fairly useless areas. It goes into "awareness", or it goes into "family events".  Well, if you have a kid like Janey, you are pretty darn aware of autism.  And if you have a kid like Janey, just getting out of the house with her is tough enough.  It is really not any help to have some kind of event to go to with her unless it is catered to kids LIKE her, kids with high need autism.  And even if it is, that's not respite.  That's not a break.  It might be fun, like going to the Lego playland or the Autism Eats Out events, but it's not really help.  Quite simply, help is RESPITE.  Help is someone else taking care for Janey for a while.  It's that simple.  It's that simple to state, but it's very, very hard to find.

Having the time and energy to think about the larger autism issues is a luxury. I am very grateful things are calmer than they were with Janey, and I knock on wood to hope they stay calm.  Progress or no, respite or not, reasons  known or not, she is a remarkable, wonderful girl---my sweet precious Janey.  I am lucky to be her mother.

3 comments:

Shanti said...

Yes! Yes! YES! One of the reasons I love your blog so much is that you often echo my thoughts. My daughter has also shown little progress over the years and when I look back at videos from when she was small, it's clear that she is more affected by her autism now. Why? And when it comes to getting good help? YES! I was so excited this last weekend. At last there was an overnight camp that is self described as "specialized programming and equipment for kids and teens with extreme sensory needs and behavior challenges!" Perfect for Naomi! And they would look after Naomi for the whole week end!! That lasted about 14 hours. :( They called us to pick her up because staff was 'overwhelmed.' They were not in any danger or anything. They were just tired and working harder than they wanted to. Bah Humbug!

Rebecca Yourig said...

I think families like yours should look int the resources of organizations such as ARC that may provide more relevant services, aid, advice to you.

Rindy May said...

I just stumbled on our blog and am so glad I did! I could not agree with you more. My daughter is 24 and severely (that is what I call it for her) autistic with a seizure disorder now. The reason I am careful to say severely is because all we hear about are the miracle children with Autism that are almost so to speak "normal". We can relate to you and your daughter with the same story. Now that she is older she is calmer and life is a little easier, thank god because I am older too and that makes it a little harder at times. As far as Respite care goes, that is what we all need but my big fear is someone will abuse. Just not understanding what she needs would seem like she were being mistreated in her eyes. That breaks my heart so for us Respite care is not an option either. The ARC is a great organization and I have used them for some advocating services but they are limited too in what they can do for us. I am saving your page and hope to keep reading it when I have time. Thank you for this.