Thursday, September 29, 2011

Fighting Hard Because There Is No "Magic Pill"

I thought we would try a day out to the library. I packed my son's stroller, his chewy necklace, and the thought that he would look happily at the children's books while I chose some to bring home. Two of my older children also went with us. The minute we walked in to the library, he stiffened up. His arms and hands got tense, and his legs and body went rigid. We made our way back to the children's section, of course at the very far corner of the large building, and then all h*** broke loose. It was the largest public tantrum that he has had in many months. Not only did the screaming begin (and I am talking blood-curdling, top of his lungs, high-pitched wailing!), but he planted his feet between each front stroller-wheel and the frame to try to avoid me from being able to push him. So this is how we made our way out of the library, as quickly as I could possibly maneuver the now-hindered stroller, through every section until we made our way, finally, to the doors. Thinking about it, I wonder what it is about that quiet place. The lights? The humming of all of those computers? The people? Whatever it is, the library has joined the list of places my son can't stand.

This event helped spark a venting session to my sweet husband, who is so wonderful about listening to my ranting. I have a secret frustration with so many of the autism sites and blogs that I follow. So much of the time, I read the sentiment that parents would not change their child's diagnosis even if they could because it makes them who they are. And to that I just have to say, REALLY?!?! I adore my son as he is...but, right now, there is no cure for autism. Nothing that I, or anyone else, can do will change the fact that he has autism. And I have come to accept that. BUT, if some genius came to me tomorrow with a pill that would take away the autism...well, you can bet everything that I would give it to him. Why would I say that I wouldn't take away my child's pain...his digestive issues, his sleep problems, his frustration, his lack of interest in toys and friends, his uncomfortableness because of his sensory processing disorder in wonderful places like the library and the aquarium, his anger when he can't communicate even the simplest of things, his violent rages...the list goes on...IF I could take it away and he could be happy for even one full day...well, I would do it. And I really can't imagine that faced with this option, many parents with an autistic child would say no.

Now, knowing that there is not a "magic pill," I love my son all the same. Even more! I just needed to let that out. I will fight with all the love in my heart to give him a happy life. After all, he deserves it.

Beautiful Poem

I saw this poem on another person's Facebook wall this morning. It's beautiful and so true.

"I am the child that looks healthy and fine. I was born with ten fingers and toes. But something is different, somewhere in my mind, And what it is, nobody knows. I am the child ......that struggles in school, Though they say that I'm perfectly smart. They tell me I'm lazy -- can learn if I try -- But I don't seem to know where to start. I am the child that won't wear the clothes Which hurt me or bother my feet. I dread sudden noises, can't handle most smells, And tastes -- there are few foods I'll eat. I am the child that can't catch the ball And runs with an awkward gait. I am the one chosen last on the team And I cringe as I stand there and wait. I am the child with whom no one will play -- The one that gets bullied and teased I try to fit in and I want to be liked, But nothing I do seems to please. I am the child that tantrums and freaks Over things that seem petty and trite. You'll never know how I panic inside, When I'm lost in my anger and fright. I am the child that fidgets and squirms Though I'm told to sit still and be good. Do you think that I choose to be out of control? Don't you know that I would if I could? I am the child with the broken heart Though I act like I don't really care. Perhaps there's a reason I'm made this way -- Some message I'm sent to share. For I am the child that needs to be loved And accepted and valued too. I am the child that is misunderstood. I am different - but look just like you." -Unknown

Tuesday, September 27, 2011

Whew, enough said!

"It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside...Never judge what you don't understand."

I'm not sure who said the above quote, but I think it's fitting. This post may be a big jumbled mess, there's a lot on my mind, but I want to get it all out.

We went to a wonderful Autism Carnival a couple of weekends ago. It was a fabulous event put on by a great organization that supports causes like autism, cancer, etc... It was very "autism-friendly" with lots of sensory activities for the kids. My son spent most of his time in the bounce houses, especially the ones with big slides at the end. But as happy as the day was, it proved to be a giant eye-opener also. There was booth after booth with items for sale such as sensory toys and autism awareness bumper stickers, and others with information on therapy, safety, and support groups. I've been to many fairs before where there were booths (I secretly love them), but this time was different. I wasn't looking at candles, jewelry, housewares, or the "normal" things you might find at an outdoor event like this one, but things to help my autistic son, and us, deal with, well, living with autism! It hit both my husband and I that we have entered a new world, and this is now the kind of stuff that we look at and learn about. There is a whole new vocabulary to learn with words like...stimming, biomedical treatment, ABA therapy, sensory processing, Floortime, autistic rages........the list goes on and on and on. But we are dedicated to helping our son in any way possible. When we could tell our son was going to start melting down, we quickly headed for the car. But the excitement of the day was already too much and we listened to him scream the entire ride home. It was the first time that I have felt that heaviness for awhile, and I am preparing myself for another event coming up soon...

We decided to have our son tested by a pediatric psychologist for a full diagnosis. So far, his "labels" have been given to us by pediatricians and occupational therapists. He has gone through all three testing days (the first - just watching him play while interviewing us, the second - an IQ test where he had to put together puzzles, finish patterns, and match shapes, etc..., and the third where the psychologist got on the floor and played with him to see where his social and imaginative skills are. Actually, I guess this last test measures over 70 different areas), and my husband and I have filled out yet another mountain of paperwork. Well, we go back for all of the results next week. The doctor said to plan on at least an hour and a half...that's a lot of results to go over! We know that this will be the entire report about our son...which can include other things, not just his autism. It's one thing living it day after day, and another hearing it.

You know what, I think I will end this post here and start a new post, or 2, for my other "subjects." I promise I've got some good stuff to report also! But this feels like quite enough for now. By the way, my beautiful son is sitting next to me as I type playing games on the iPad (love that thing!) which he has started playing upside down (the iPad that is, not him.) :) Maybe I need to get his eyes checked too?!?!