I guess I am still pretty down - likely because Zach really hasn't come that far. It's like he has been in the same place for 16 months. Actually, he is further behind where he was 16 months ago. :( The vocabulary is no where near as functional, and is limited and has to be prompted. He no longer recognizes letters, even when I prompt him to identify. He cries when ANY demands are placed upon him.
He hates therapy - regardless of methodology, and even therapist personalities. He has begun new stims - that sort of look more seizure like than before.
They eye contact and interest in others ebbs and weaves. The pointing seems random, and without function. Although he seems to enjoy bike rides, he will not peddle regardless of how many times we show him and encourage him. He no longer plays with balls. He no longer sings. He doesn't dance - only bobs his head here and there.
I am losing most of my steam here. I wish he almost had more of the symptoms of autism - lining things up, screaming, head banging - just because it seems like those kids are frustrated without the lack of communication. Zach seams perfectly content to be in his own world, and doesn't want it to be interrupted, less it be for food and the occasional diaper change.
I want to believe this is being 2 - but he is almost 3 now. Tired. Disappointed. Down. I wish I had some way of lifting my spirits up. Driving past this major developmental institution in Saranac Lake this past weekend didn't help. I just want to know if that is where we are heading?
I really hope this is my perception problem - but I am looking at the facts and it is hard to argue with where he was and where he is. I appreciate you trying to keep my hope alive - but the following article keeps on lingering in my mind. http://www.time.com/time/magazine/article/0,9171,1898322,00.html
I hope I am not bumming you out - I don't think I want to put this in my blog - but I feel like I need to let SOMEONE know what is up with me.
Wednesday, August 26, 2009
Full disclosure
I didn't want to post for awhile - and I am beginning to realize it was more about my emotional state than it is Zach. I have taken an excerpt of mine from an email I sent a good friend who also has a son (age freshly 7) on the spectrum and has lots of experience with the roller coaster.
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3 comments:
(((Hugs))). I didn't realize how dim things look right now. Still, perhaps different approach and a break in grueling therapy schedule will help. I am there if you need to talk.
Melissa and Conor are very dear friends of ours and pointed me in this direction and boy am I glad. I want you to know that you can vent and use my shoulder for the tears because I know that it is tough. I have been a single parent through this whole ordeal and am disabled myself. My son is 7 so please check out my blog and send me an e-mail...I welcome you with open arms. msterriousgirl@hotmail.com
You need lots of support and I will always be here for you just as Melissa has always been there for me. Hugs! Lora and Griffin
I, too, found your blog through Melissa. I can completely relate to the feelings you express. i spent yesterday crying with worry over my (nearly 6 yr old) son's future as I said goodbye to my college-bound niece. My pride in her accomplishments was blunted by my worries and "what-if's." The feelings are real and undeniable but where our children may be right now, today, is but a moment in time.
Honestly, I refuse to read articles like the one in Time. They only steal my breath and gnaw away at my hope and at my ability to see how far my son HAS come. And he has come so very far from his very rough start in this world.
But, just like there are so many variations of autism which no one can predict, there are so many variations of possibility for our children. I choose to focus on that (in my better days! I'm certainly not a saint! LOL) and try to find the ways to help my son in the here and now. it's all I can do because I don't know what tomorrow will bring.
There is a whole community of parents out here to help you on your journey; please don't go it alone. Let us help lift you up when you need it and share your joys and sorrows.
Sending hope and prayers that today is a brighter day foryou and your awesome boy.
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