Friday, March 31, 2017

Frustrations from a parents point of view

Another 2 weeks has gone by, how is that even possible? In those two weeks a lot of things have come to mind, every scenario, the present, the past, the future, it's all in there. So here's a few questions I have asked myself.

There are days when Dacotah other than not talking as much as another 3 year old, errr or a 2 year old for that matter, seems like a normal child. Slightly tall for his age, super loving, and loves playing outside. I question in my mind making more PECS cards to see if that would give him another communication boost as he has learned the words for the first set I made months ago. Another mom suggested the proloquo2go for his tablet, I hate the price, and I'm afraid it will make him to where he won't want to talk to us. He will just push a button that talks for him.

Going to playgrounds, he loves it, his sister loves it, I hate it. Why? Because I cannot help but notice how far behind he is. Yep, I find myself constantly comparing him to others. I don't mean to, but I do. I hear them say "hey mom, watch this" "can we go get ice cream when we leave here". I'm not talking about the 5-8 year olds, I'm talking about the "normal" kids who are 2-3 years old, his age. I get depressed and sad and there are days I wonder when his time to talk will be. Yes, he is making progress and yes it is painfully slow, but it's still hard.

I have come to accept that it is okay for me to question, to be upset, and to wonder what is to come. It doesn't make me a bad parent or a bad mom. It just means I care and I want what is best for my children. That is not wrong of me.

If there was anything I wish people would stop saying is "I'm sorry" I hate those words. It's me, it's personally a problem that I have, because I don't understand why they are sorry. They haven't done anything wrong so why apologize? I wish they would stop saying he's quiet, he's shy, he'll grow out of it. People listen to me when I say he is 3 YEARS OLD, he is on a 2 YEAR OLD level. That means he is 1/3 of the way behind his peers who are the same age. He may not grow out of it, this may be his "marker" He may always be 1/3 behind and that's okay, nothing to be sorry about. He will talk to you, but it has to be on his terms in his own time. He is not shy, that's not the reason he doesn't talk. Let him approach you and he will smile and say "this" as he shows you something. He will say Look and point to what it is he wants you to see with him. He gets excited.

What I wish people would say.... I wish people would ask randomly how we are doing, instead of pretending we don't exist. That has been super hard for me. Montana's friends ask her why they have to come inside to play, or why they have to include her brother when she's outside playing in the yard. I wish they knew how happy and excited he is to join in their game of hide and seek. He tries to count with them and he loves to seek. I would love to go out to eat with our friends from church, but we can't because it's hard enough cramming our food down fast enough when it's just us with Dacotah. But did you know, we enjoy having friends over for dinner, so Dacotah is in his "safe environment".

I have contemplated going to Maryland in June to see the genetics doctor regarding his genetics. After da da (Dacotah's word for daddy) and I talked, I think we are going to try to find a place closer to home towards Knoxville. It's 2 hours vs. 10 hours, and it's covered by our insurance instead of $1300 out of pocket. What I am hoping to get? Well it's like I explained to someone today they have developmental guides for premature babies, maybe someone could tell me what "chart" would be best so we know where best to push Dacotah, where he is within normal limits, and where we need to back off.

I was able to make a contact with the local autism group. They meet in April so I'm hoping to attend that meeting to find out what resources are available to us where we live. Which sadly isn't very much. The closest respite care is in Johnson City, not sure how that works, it may not be for us, but it will be good to connect to see where what direction we need to go.

Tomorrow starts "Autism Awareness Month" I will leave you with a quote "If you've met one individual with autism, you've met one individual with autism" -Stephen M. Shore

The above quote is so true and soooooooo very frustrating. There is no guidebook, this a fly by the seat of your pants, drop back and punt, do the best you can.

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