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Developmental Delays

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predictions

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  13177.1
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  Sep-25 12:24 pm

if you are also on hypotonia board sorry its me again . sidneys report was just so upsetting to me. i do not understand the value of predicting lifelong cognitive delay at this early stage. his gross and fine motor 6-9 month range i believe his receptive language around the same close to 7 months i think and expressive at 3.. ok i get it at 13 months he is very delayed but his hypotonia has been pretty limiting . the neuro did throw in that he would make progress . thanks this hurts so much been there? help!
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  13177.2 in response to 13177.1
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  Sep-25 7:39 pm

I did reply on the hypotonia board too but wanted to give you some more hugs. I know how hard it can be. Evaluations are depressing, some appointments are too. Genetics was always the bad one for me. Kristin is a severe case, no benign hypotonia here, her brain is very affected by whatever. As a baby, about 5 mo old she rated <1 mo and now at 4 yrs its 3-6 mo. Not really a huge change. It gets to you even though its not really news to you. Lots of hypotonia moms say the second year is the hardest and thats where you are not. Hang in there. Take care of yourself and do everything you can for your baby and things will level off. The not knowing is so hard. And I also believe your drinking is not related, btw. The best indicator for me was always seeing people who were supportive of Kristin but didn't see her often. When you are with your child 24/7 its hard to see the changes. I'm glad they had something encouraging to say also. He will get there when he's ready. Lots of kids surprise us as they get older. Hugs.
Kari
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  13177.3 in response to 13177.2
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  Sep-25 8:22 pm

Kari,
Wow thanks for taking the time and energy to write twice!
I so appreciate it and really find comfort in your words. I know all of our situations are different and am so grateful to you for your compassion. It is hard to imagine what life is like for you with Kristin and what her life is like. From the pic she looks happy with her brother. I send you two hugs too.
Well thank you again for your kind words..
Andrea
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  13177.4 in response to 13177.1
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  Sep-26 2:28 pm

(((Andrea)))

I have so been there.  First, I remember the initial EI meeting when Matthew was 18 months and they told me he was functioning at the level of a 8 month old.  I said "well he can catch up, right?" and they just stared at me.  Then at his neuro appt a month later the neuro said "he is retarded but he is cute so he will get extra help from his teachers".  Exact words.   Oh yeah, it hurts.  It threw me in a definite downward spiral.  I remember latching onto another doctors words "you have no reason not to be optomistic."

I have seen classmates from EI and preschool and early elementary graduate out of special ed.  It is really hard to predict at the younger ages.   Matthew at 10 still has significant challenges.  But he has made a lot of progress and I expect it will continue.   I refuse to ever give up.  He is a sweet gentle soul who works so hard.  I wish I could have those early years back when I was so deep in my own funk I forgot to enjoy him.   I know we can't deny our feelings and it's hard but try  not to let them get the best of you.  Seeing Mom's of older kids helped me - I thought if they could do it I could do it too.

Expect the best.  Make sure teachers and therapists keep the bar high.  You will learn to spot the ones that help you child the most.

I hope this helps some. 

 

Jan & Matthew (10) - mild hypotonia, apraxia, dysarthria, autism, reluctant AAC user

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  13177.5 in response to 13177.4
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  Sep-28 7:12 pm

Jan
thank you so much for the post. I really appreciate it more than you know. I am happy to hear Matthew continues to progress .

Wow i have heard similar things like sidney so pleasant the therapists will want to help more. strange i imagine they want to help all the children they work with. anyway again thanks for writing and for the good advice.

a

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