Tuesday, January 26, 2010

because it's really all about me (sarcasm here)

This is a post I don't quite know how to write. This is a selfish post. This is a "poor poor me" post. It's something I need to write about and something I want to write about but I just never seem to have the words to adequately capture what it is that's yammering to get out.

There's this young man in my life. A handsome intelligent and loving young man. He is one of my greatest joys as well as the source of so much frustration and heartache. My Sam. As his mother I am quite biased in how I see him. I easily see all that is amazing about Sam. I am used to the quirks, which are to some people unacceptable habits. I ache to make life easier for him. I get so angry that time and time again I let my hopes rise too high and am disappointed with how this or that or the other thing is unfolding. (Note the excessive use of "I" in that there paragraph...I wasn't kidding when I said it was all about me.)

School...let me just say that school this year is better than last year. Not like that would be difficult. Last year was so bad, it doesn't take much for me to consider this year a better year. I had my doubts about his teacher. She was not the teacher several people recommended to me for Sam. I fought with the principal over this but she and the special education liaison person remained adamant that Sam was in the best place for Sam; don't worry...we didn't actually brawl...it was all quite civilized. I lost some faith in my own instincts after last year too, so while my initial impression of his teacher was positive, it's taken me half the school year before I can admit that this teacher is a good placement for Sam.

He is now receiving services at school that address most of his needs and the support reaches across the curriculum. He is no longer just getting help for math but help that specifically addresses his difficulties with executive functioning that impact all subject matters. His speech services have been expanded to include his underdeveloped pragmatic language skills. The guidance counselor pinpointed several areas in Sam's social development that are seriously delayed and she had a plan to tackle them. I liked their no nonsense approach. He is seeing a therapist to help him handle his anxiety and stress. His therapist has given me a reading list and names or resources which will help me understand and get support from people who understand where we are, where we've been and how to move ahead.

And yet...and yet...I still feel discouraged. I watch him at his basketball game. The other boys gracefully run up and down the court, passing the ball off to each other, moving into positions on the court in order to help the team win. My Sam...heart of my heart...trails along behind the group, plays with his hands, and falls on purpose every few feet. He says he loves playing basketball. He looks forward to it and excitedly reminds me not to forget what time his game is each Saturday. Me? I just want him to quit. (selfish selfish me). Sitting in those stands week after week and seeing how very very different he is from the other boys is like getting punched in the gut over and over, week after week.

He still only has one friend. One friend. Not because he's not friendly enough but because most kids are put off by his odd behaviours. Sometimes when we're at a weekly activity we go to, he will wave enthusiastically to a classmate there who never, not once, acknowledges Sam's happy greetings. This pisses me off. I want to walk over to the boy and ask him where the heck his manners are. How dare he?? But if I think objectively about it, I understand. I often tell myself I don't want Sam to be like the other kids because the other boys are obnoxious and rude and loud. But I don't actually think they are. They're just acting like nine year old boys. I'm just trying to make myself feel better.

I often get frustrated with him and his rigid routines and his excessive reactions if those routines are disrupted. Sometimes I'm not so understanding of his outbursts, his stimming, the little things he does that make him stick out. I get tired of all the work raising a child with special needs requires. Then the next minute finds me hoping we are doing right by him. I hope we are preparing him for all that life has to offer. And I'm frightened we're not doing enough. Always there is that undercurrent of fear that I've forgotten something or missed something(Again with the I, I, I).

I just read a book written by a young teenager with Asperger's syndrome. This teenager wrote the book for other teens with autism to help them cope in the world. He also wrote it to help the rest of the world understand and accept people who have autism. It was fascinating to find out how people with AS think and feel and approach the world from the perspective of a person who has autism. At the same time it depressed me to be reminded that Sam will always have autism. He won't ever be typical. He can be successful and function better in a world that's fraught with hurdles, but I wonder, will he always be waving across the room at people who look away and pretend they didn't see him?

Please don't think I wallow in self pity and lament and cry about the unfairness of it all. This kind of thing goes in phases. And seriously, most of the time I am plowing ahead and not taking any notice of the small stuff. But I can't deny I fall into a funk from time to time. I'd be lying if I told you I have my brave face on all the time. I take great joy in my son. He truly is a child you can't help loving. Not just me, but anyone who is willing to look past the autism and get to know who Sam is, falls in love with him. He makes me laugh and astounds me with what he knows (especially about volcanoes...he must know every detail of every major volcanic eruption that's occurred this century). He is so much fun to surprise with a night out or a trip to pick out a toy just for fun.

But sometimes I just need to whine. And if you've made it this far...I'm done...for now.


Kim said...

I don't really know what to say, because I haven't been there... yet. But I worry about so many of the same things for Jude. Being a parent to a special needs child IS hard. I've been at is much less time than have you, but it's incredibly challenging. Emotionally draining. And you (we) are completely entitled to feel overwhelmed and distressed by it. Were I with you in person, I'd give you a big hug and cry with you, out of frustration, sadness, and love.
Sam is a lucky boy to have you as his mama. And you're a lucky mama to have him as your son.

Marie said...

Kim, I appreciate that you didn't run screaming as I went on and on. LOL! Thanks for the hugs and commiseration.

Wilma said...

You'd hope that at some point kids learn from their parents and teachers how to be kind and gracious and accepting of people who act different from the norm. I can't imagine how heartbreaking it must be to witness this.

You're such an awesome mom, you're one of my mommy heroes!

Marie said...

It's funny Wilma. Kids were much more accepting of any differences when he was younger. As they've gotten older and learned what is and is not socially "acceptable" his differences stand out so much more. There are some people (adults and kids) who don't care about the norm and I'm so thankful for them. Thanks...I certainly don't feel like a hero...but I'm so glad I've got people like you cheering me on. :)

Sarah said...

hugs Marie. You are a fabulous mom and Sam is a fan-tab-ulous boy. I can only imagine the heartbreak, frustration, and exhaustion you feel some days and I'm so sorry that you and Sam have to deal with such challenges. Whine away when you need to. And remember how wonderful you and Sam really are.

Margaret said...

Marie, you are such an amazing mommy and you have every right to vent. Sam is so lucky to have you as his mother, and I admire all that you do. Sending big hugs your way!!

I heart said...

I agree with everybody else - Sam is such a lucky kid to have you as his mama! I can't even imagine how frustrating this must be. You just vent any time and we'll be here to listen (read) and give a big cyber hug! lol

Marie said...

You guys are the BEST! Thanks :)