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any special needs parents around??

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Old 11-28-2012, 03:05 PM   #1
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hey everyone! im wondering if there are any other ladies/men doing the special needs parenting thing!
i have a little guy who is deaf, very delayed, has facial palsy, and has been diagnosed with a variant of moebius syndrome, but we honestly arent even sure if that is correct.
any advice, ideas, etc would be awesome!
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Old 11-28-2012, 07:50 PM   #2
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I'm not a parent but I taught special ed for 7 years. I'm sure it's scary to not know exactly what is going on. How old is your son? Is he getting any services like physical, occupational, or speech therapy?
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Old 11-28-2012, 09:30 PM   #3
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he is almost 3,and he has all 3 of those. its been a rough year..the main issue is communication and eating. he cant talk OR sign, so we are hoping he will learn to use pictures to tell us what he needs. he did finally learn how to point at stuff though. its frustrating, him being deaf AND delayed..he hears almost 100 percent with his hearing aids, but hes just not understanding how to talk. he also has a very bad oral aversion, so we have a feeding tube for backup when he wont drink his bottle. he cant chew solids, so when he will eat, it has to be pureed. very different situation, thats for sure. facebook has been a godsend though, i have met a lot of people in my shoes, and i made a page for parents in my area that are going through similar issues. the thing that i am grateful for is that hes perfectly healthy..no seizures, no respiratory issues..hes a great big boy
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Old 11-29-2012, 02:59 AM   #4
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wow you have alot on your plate is that him in your picture? he looks adorable!

i'm the parent of a child diagnosed ADHD and also exhibits (undiagnosed) autistic traits...although he struggled with social skills in elementary school, his main challenge now is academically in high school...he's 15 now
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Old 11-29-2012, 08:22 PM   #5
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that is my francis! here is a better picture of him!



our little guy has a ton of sensory issues, and he gets upset really easy..its hard. the worst part is that he doesnt really sleep at night..hes up and down all night long, which means i am too!
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Old 11-29-2012, 11:51 PM   #6
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ugh sleep at night was hard with my older son too....he was colicky, which i later heard happens to alot of ADHD babies...cried constantly, etc...so i'd sleep half the night (or try to, in a small apartment) while his dad was up with him, then i'd be up with him the other half the night so dad could rest, then i'd go to work all day while dad stayed home with him (dad wasnt working)

15 years later i'm still grateful for the full nights sleep that i can get now lol
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Old 11-30-2012, 01:20 AM   #7
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we have tried all sorts of sleep medication, but nothing works for long. hes up right now...!!
apparently, moebius syndrome kids have sleep issues, so i guess thats part of it, or who knows. we have had a sleep study done, and it was ok as far as we know, but he wouldnt stay asleep for it.
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Old 12-02-2012, 07:26 PM   #8
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I am adopting a 3 year old boy (almost final!). He has severe ADHD, a speech delay, sensory issues, severe separation anxiety, possibly ODD, and major food issues.
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Old 12-02-2012, 07:33 PM   #9
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Quote:
Originally Posted by FitGirlyGirl View Post
I am adopting a 3 year old boy (almost final!). He has severe ADHD, a speech delay, sensory issues, severe separation anxiety, possibly ODD, and major food issues.
you are amazing!! he is so very lucky to have you in his life!!
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Old 12-02-2012, 07:59 PM   #10
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He's an awesome little boy and I am blessed.
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Old 12-02-2012, 08:49 PM   #11
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As someone with severe ADHD (HI/PI) since childhood, I think it's really cool that you are so supportive and willing to face these issues head on. The world is better because of mums like you all. Keep kicking butt!
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Old 12-02-2012, 09:08 PM   #12
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Well, I have ADHD myself. It's not as severe as his, but it does help me be understanding.
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Old 12-26-2012, 09:05 PM   #13
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I'm not a parent, but I've been supporting individuals with special needs for the last 17 years (I started young). I've mostly worked with adults, but I'm a case manager now and I have a lot of info in my head that might be of use to someone.

Your son is adorable!
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Old 01-03-2013, 07:42 PM   #14
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Hi. I have a 13 year old with ADD, and ODD. He is suspected of being on the low end of the spectrum, but we feel why test him? Everything we do for the others would also be done for any autism. Plus he feels bad when he is tested.
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Old 02-20-2013, 07:23 PM   #15
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Hi I am a special needs mom! My daughter has CP Auditory neuropathy, gerd and dystonia, She is quite severe. She is unable to hold her head up sit crawl or even talk. She is a cutie though and very loving and social. We are working on getting her to choose pictures as well. I am trying to get rid of the stress eating weight that seems to haunt me since she was born. Good luck!
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