developmental delays

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developmental delays
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Hi so I have spastic quad cp, muscles tight 24/7/365, I went to an optho appmmt and met with an COTA, who noted i have prblms w/ eye contact rec f/u

#AutismSpectrumDisorder #CerebralPalsy #DevelopmentalDelays #EyeContact #Nystagmus

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Now what?

#DownSyndrome #downsyndromeawareness #DevelopmentalDelays
Today was one of those days where I found myself asking "what next?"  We were at the park with two of our three kids. Our oldest who is nearly 21 and has Down Syndrome and our youngest who is 8. Our 8 year old ran around the park doing her thing. Our oldest picked a swing and I pushed her. Over the years I have seen the posts about the very high functioning people with Down Syndrome getting out of high school, going to college, becoming models etc etc etc. And that's .... super. But it's harder to find the stories from parents whose kids are not so up there on the scale. Last year, before the pandemic, she was involved for a time with a local organization that gives the adults with cognitive delays a place to go. Perhaps they went to volunteer some place, maybe they went bowling, maybe they just drove around and got food. They did something to get out of the house so their caregivers could go to work or take a break. Those are the stories we don't hear about. It only lasted so long, and she refused to go. Now, she's home. Every. Damn. Day. And I can't leave her alone because she doesn't understand, please don't microwave metal. Please don't consume soy sauce. Please don't take a walk by yourself. She needs someone to watch her. And asking for respite care is not as easy as all that. And our family is limited.
We are one of those families whose kid falls into the category of not so high functioning so they don't make it into a tv show or land a modeling contract. I have nothing against those individuals whatsoever.
What I have a problem with is that while it's great to want to show the world that a label isn't everything, at least show the world that that label holds many different variables.
And some of us are left with trying to figure out what happens to our loved ones.
I'm tired.
I'm concerned. I go over game plans in my head.
Financial concerns are one thing.
But it's the love, the support. The real human connection that she'll lose when we die.
Because the fact is, she barely has it now while we're alive.
The world is consumed with feel good stories about the person with the disability who conquered it all and is giving TED talks about the power of positive thinking and not feeling sorry for yourself.
But it's not nearly concerned enough about recreating a society that needs to make room for people who aren't keeping up with the rest.
I need a break. And taking that break is impossible while I'm not only fighting her challenges but fighting an uphill battle to raise an awareness to disability.

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Is there anyone you dislike but are stuck with during this #quarentine

I am stuck in a house with me ex/sons father and before this lock-in I was in the process of looking for a place to move within the next couple months now that everything is closed I am unable to view apartments or even get a call back from potential landlords. Along with my #BipolarDepression #PTSD and #aniexty this is one of the hardest things I've had to go thru. No family my kids but I can't spend time with them like I want. One is 18 and one is 5....girl/boy. And the boy has #DevelopmentalDelays

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