I can't remember when I let so much time pass between entries.
Much has happened. Summer began and is almost over.
Cuyler started camp (to his delight).
Lost a tooth (to his terror. really. terror)
We moved to a new home.
Big changes for The Colemans.
We had my sister and her family here for 6 weeks. Her little one is 6 days older than Eva. It was amazing to see them together. The played with each other, not just near each other. Marley talks up a storm and I think that got Eva going. In the past week she's talking a ton and putting 2 and 3 words together.
I don't know if it's the move that's got my nose out of joint but I'm back in a funk.
I just feel a sense of dread with Cuyler.
WHY ISN'T HE BETTER??!?!?!
When will I have the "A-Ha!" moment when I feel that he'll be "fine"????
When he was dx'd at 2.5 I felt like we got it early enough to fully remediate him. Now he's nearing 6 and we are so far from where I had hoped/thought we would be.
Little things keep happening that remind me that our life is like none of our friends.
My best friend emailed me that she's not ready for her boy to go into grade one. And it made me well up because her boy is 2 weeks younger than my boy. And my boy is staying in kindergarten.
Best decision for Cuyler. But still hurts my heart a bit.
I thought that I had gotten past all the shit emotions that go along with parenting a special needs child. All the grief. The anger. The sadness. The fear. The guilt. The confusion. The exhaustion.
But it's all still there. Just festering under the surface waiting to emerg when I least expect it.
I don't think a day has gone by where autism isn't a part of it. With HANDLE and RDI...it's impossible. And if there is a day where I don't do either...the guilt I feel is tremendous.
Lately I feel like I'm living the movie Groundhog Day. Living the same day over and over again. Raising a 2 yr old forever. Same tantrums everyday. Same stims everyday. Same scripts everyday. Same conversations everyday.
Most people raise their kids and with each age and stage comes new and different challenges. My challenges have remained the same for 3yrs.
I feel like I didn't take full advantage of the summer to prepare him for his second year of kindergarten. I really thought I'd spend the summer - guns a blazin! - with RDI and HANDLE...working on printing...and I feel like we're no further ahead.
When his tooth was loose there was one night he spent 1 hour and 15 minutes sitting on his bed wiggling it. It consumed him.
When it fell out - he was screaming. Trembling. Didn't know what was happening even though we tried to prepare him. He just didn't understand what was happening. And for someone with as many sesnory issues as he has - him losing his tooth is comparable to your arm just falling off your body.
And don't even mention the tooth fairy!
So, what should be an exciting right of passage...a major milestone in a little boys life turned out to be nothing short of horrifying for him. We had to bring him into our bed and have him lie with us til nearly midnight for him to calm down.
There were a couple of little girls trying to play with him today. Asking his name and wanting to play with him. He basically ignored them. But they still invited him to play in their backyard where he found their swings. So there he sat, ignoring his new "friends". On our old street everyone knew Cuyler and he fit in in his own way. There was a webb and flow to how the kids played in the old neighbourhood. Cuyler had his role within the group of kids and the other kids would make exceptions for Cuyler in their games. They knew he didn't understand or know how to play but they included him no matter what. I'm afraid the new kids will not like him or think he's mean or weird.
Lately it feel like autism gets more difficult to deal with as he gets older. I really thought it was tough when he was little. But this sucks.
It really fucking sucks.
posted by Irish @ 9:16 PM
10 Comments:
With Andrew now also six years old, I am feeling the same way as you. All of it, I can relate. He hasn't loss a tooth yet though. I am sure he will react the same as Cuyler when he does.
By the way, my blog is private now. If you want to read it, you can email me, so I can put your email in and send you an invite.
I'm right there with you. It's hard for me to watch my barely 2 year old daughter catching up to her 4 year old brother. What happens when she passes him? I think it's going to be much harder on me than him, but it's still going to suck.
Hopefully the neighborhood kids will get to know Cuyler and he'll find his niche with them.
I emailed you once a few years ago about RDI. We never did do it due to money and availability.
Anyway my dd is now 13 and is doing great. (not perfect but pretty good)
At age 6 she was still hiding in a corner of the school yard and screaming at kids if they got too close. Now she has facebook and 7 friends on it; two she met at summer school. (13 is too old to be setting up playdates; ya know?)
My long winded point is that things may look slow and bleak now but every year will get better and I bet if you looked back at things even 6 months ago; you'd see improvements but day to day it must seem static.
((HUGS)) I wish I could promise you that it will get better. I can promise you that you- and he- will have better days. you will have days that will overwhelm you with pride.
He is a smart and sweet little boy. And you are an amazing mommy!
Sorry you're feeling this way. I'm sure the move has a lot to do with it- having to get settled in to a new place. This time of year is hard for me because of school starting and also Henry's birthday is Sept. 1. I can relate to what you're saying about Groundhog Day- I feel like every year I tell people to get Henry the SAME DAMN things for his birthday. Some of his skills do increase with age, but his interests stay the same.
Hang in there!
I'm sorry you're having such a rough time right now. I feel bad for Cuyler being so frightened of losing his tooth. You never know what the future will hold; I have the feeling good things will be coming your way.
My son is neurotypical (that's such a clumsy word but I guess it beats the alternative "normal") he's 20 now but when he was little he had a tough time with imaginary play == a truck rolled on the floor and carried things and people, it didn't talk or turn into a rocket ship. To help him with build his imagination I sent away for a "magic wand" with pretty sparkles floating in the handle and bright, shiny streamers. I told him he could make a wish, wave the wand and voila! his wish "just might" come true.
I guess he didn't hear the "just might" part because he talked a lot about what he was going to do with the wand when it came. Mainly, he was going to turn my husband's car into a new Porsche. My hubby and I thought it was cute. Until the wand came and it failed to work as he expected.
I thought he'd never stop crying. He still occasionally reminds me how disappointed he was that the wand didn't work the way he expected it to.
The moral of this long story is that all kids are different and so-called "neurotypical" kids experience frustration and heartbreak, too.
By the way, my son is about to start his second year of college and he's studying computer technology and working on campus as a computer programmer. His mind still feels more comfortable with factual things than with imaginary ones.
-Jill
i can't even imagine that something so small like losing a tooth is such a big deal for him!!
but, i'm sure you know this, Cuyler is so lucky to have the two of you as parents. you seem amazing.
Oh, sweetie, I am sorry you are feeling like this. It may sound insensitive, but try to think about how far Cuyler has come! Don't think about where he should be, or where you think he should have been by now. Take one day at a time. I know I will never go thru what you guys go thru and I can't fully relate. You have such patience and understanding with him. You were meant to be his mom cuz God knew that you would be the perfect person for him to have. He will progress. Don't look at it as a race. He'll get there when he's ready. I'll keep you guys in my prayers.
I know how you feel. My son's progress also seems so frustratingly slow. It's painful to read other "autism moms" blog about their kids testing out of their autism diagnosis (PDD-NOS), how no one at school can "tell" -- and then I look at my son, who is SO obviously different, and probably always will be. Some days I am just so disheartened. And the only way I can admit this out loud is through an anonymous blog comment. I'm so sad.
I'm righ there with you- those feelings you described, that we all thought we hurdled way back with the initial diagnosis- they never go away- I think they come and go in cycles, forever...
My son is only four, he was diagnosed at 2.5 as well and I feel like your story completely matches mine- we've done everything and sometimes I feel like nothings ever getting better- he still doesn't talk- well a word here or there every couple of days. But I do stop when I realize I've gone way to the negative side and remember all the progress he HAS made- he use to have such bad self-injurous behaviors that he had a bald spot from pulling his hair, a permananet bruise on his forehead from banging his head on the wall, and bite marks on his arms. He doesn't do any of that and hasn't for over a year now. He use to have NO imitation skills but now he waves, will do itsy bitsy spider- so much more that I can't list it all here.
Really, I only meant to write that I knwo exactly how you feel and I've learned not to feel guilty about my feelings- they are what they are- I think we are certainly allowed to have negative feelings- our children were robbed of so many things that everyone takes for granted...
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