Monday, May 2, 2011

It's just emotion that's taking me over (a non-food post)

Oddly, I don't know a lot of people directly who have autistic kids. I have never actively sought out support groups or others like us so I had 'something in common'. For a long time, I felt too involved in helping my own child, too overwhelmed with my own thoughts and feelings, too fragile to take on another person's woes. I had one friend from a playgroup with an autistic son, and it was enough to chat or ask questions when we met.

I thought if I knew of too many stories or families, it might shatter my front. I receive many comments on how wonderfully I seem to take it all in stride, and how great I am with E. The truth is it took me time to get there. I didn't always handle her with calm, spent my fair share of time breaking down sobbing, and worrying over what the future might hold, over what I could do to get her to be like a "regular" kid.

I can't say when the subtle shift in my thinking began. Maybe it was when the psychologist gave the official diagnosis and explained in layman's terms how their brains seem to work. Maybe it was my own parent pointing out that in all of us is a little bit of autism, a degree of intensity over some facet of our life. Maybe it was her kindergarten teacher pointing out all the neat little things that "make her such a unique wonderful kid". Maybe it was an accumulation of positive moments instead of negative ones, but in the last year I feel I've accepted E for who she is. If I had a wish from a magic genie, I would not wish to change her - much. I do think I would wish for the anxiety to be less for her. But I love that she loves nature, that she can walk and walk with me and not complain or seem tired, that she calls her sister (sometimes) her "little angel".

Recently I met another parent of an autistic child. Her son was similar in age and symptoms to E and we chatted generally while H and her son were on the playground. Then she said she was sure there was no real future for her kid and that she would probably put him in a special care home when he was older as she did not want to be his caretaker the rest of his life. This stunned me for a minute. Even in my lowest low while trying to figure out what was going on with E did I ever feel like just giving up. I was going to fix it, and when I understood that was the wrong approach I was still going to fight to improve it to be the best it could be. I still feel that way now. I hold E to a high expectation. She lets me know sometimes how frustrated she is. I remind her of how great she feels when she achieves something. I let her set her own goal that sometimes is beyond what I would. How to respond to this mom who had different thoughts? I said you never know what could happen.

Because you don't. Back when I had a 13 month old who would only eat Stage 1 baby food, back when I had a 2 year old who ate only Cheerios and yogurt and threw 4 hour tantrums which kept me from venturing out of the house anywhere with her, back when she was 3 and her preschool voiced concerns over her lack of social interaction, her inability to transition, back when she was 4 and I had to listen to other parents say how wonderfully cute it was that their child said "I love you" and desperately want to hear it from my own - back then, I never thought she would be in mainstream first grade, reading 2 to 3 grade levels ahead, albeit struggling with math. I never thought she would be the polite, social, empathetic little girl that she is.

So I refuse to believe for a moment that she won't have as "regular" a life as any other person. 


Char said...

You are right - you never know. And it's your love and effort, and BELIEF, as E's mom that have won half this battle. ((Hugs))

Alie said...

You. Are. An. Amazing. Mother. Never forget that. I still remember (and have kept) the e-mail when you told our group about the first time she told you she loved you. And you're right, we all have a little bit of autism in us. I believe that E will find her path in life and will be great at what she chooses to do because of all the support and love you give her. You're an inspiration.

Angelina said...

It's amazing to me what similar parenting experiences we've had with our kids but my son is not autistic (many people thought he was in the spectrum until we took him to a psychologist)he has OCD and ADD. He is an extreme picky eater (I guess resistant eater is a more positive way of putting it?) and had seriously exhausting tantrums and many of the things you're talking about (difficulty with transitions, tactile sensitivities, etc). Anyway, I have shed so many frustrated tears over parenting him.

At a certain point I stopped struggling so hard. I think seeing the psychologist helped a great deal. But I spend a lot of time encouraging his strengths and not losing quite so much sleep over his challenges. I see in him this great individual who has some incredible gifts that he probably wouldn't have if he was a "regular" kid. Parenting a special needs kid can be exhausting but I wouldn't change my kid if I had the chance. I just look for ways I can make his struggles less hard. I just try to find him and teach him to use as many tools as possible.

I really enjoyed reading this post. Never giving up is the best thing any of us can do for our kids. good work!

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