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Not sure if this is the right place for me.... x-posted-

Forum: Children with Special Needs


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December 27th, 2011, 07:47 PM
Mom.to.PinknBlue's Avatar Platinum Supermommy
Join Date: Jun 2009
Location: Lame-o Illinois
Posts: 12,234
My daughter Harleigh is 18 months. She is 31" tall and 17 pounds 5 ounces. After tons and tons of testing and seeing a GI, they can not find anything wrong with her. We cut dairy out of her diet at suggestion from another ped in her office and for awhile she did good. But now she still doesn't eat much. I had a very rough pregnancy and my delivery was not what we expected. After my OB getting impatient I was given Pitocin and an epidural which I had a reaction to and they had to give me Benadryl. Harleigh ended up in NICU for a few hours for monitoring because she wasn't breathing well. She had trouble nursing and then refused at 6 months. She has always been a crappy eater and delayed in doing most things. She doesn't talk alot, she just started walking this past October, and I have noticed her struggling with more and more things that kids her age can do. At her 18 month check up they did the Autism questionnaire and her pedi is having us take her for an early intervention evaluation because he is really concerned about her. I knew she was delayed and for awhile DH and I have thought something may be off with her but once I talked to her pedi about my concerns and he showed concern as well it kind of hit home. Harleigh has these weird quirks where she will lift her shoulder and put her ear on it a few times in a row. She plays better by herself then with others. She still has issues eating and using utensils. She is always pulling her hair or ears and wrings her hands a lot. I am expecting a call tomorrow from our case coordinator with Options and Advocacy to schedule a meeting to fill out paperwork and then we will be able to schedule her evaluation. If anything we can find out just how far behind she is and what she needs help on and can get her help. And we will finally have answers as to why she does what she does and doesn't do.

I am so sorry this long and winded. And I apologize if this is not the right place for me. But right now DH and I could use all the support we could get, since his family is the denial type and mine is partially too as well as overly dramatic. (hugs)
Amelia: Wife to Ryan, Mama to Harleigh, with a boy on the way
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December 28th, 2011, 10:24 AM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
This sounds like just the right place for you!

Hi! I want to start off by saying that I'm sorry you're dealing with all of this. When Carrie started showing signs of delays both of our families did the denial thing. "She'll catch up" or "She's just a late bloomer" which I know makes it harder to deal with. It's bad enough to know that there is a delay with your child, but to have to defend your position is frustrating.

Have you had her checked out by an audiologist? You mentioned the lack of speaking, the ear quirk and even late walking can be from ear problems (bad balance caused by inner ear problems). Some state interventions have an audiologist that can check you child out, if not I'd try and get a referral if you haven't already seen one just to rule it out.

You situation sounds kind of similar to ours (Carrie's much further delayed) but she would NOT eat (have they given you tips to get her extra calories, like adding butter or oil to almost everything)? Carrie was a poor eater and also spent some time in the SCN (the military version of the NICU) because of poor breathing and she has also always been very light (in regard to her weight) for her age. I really do feel your struggle. It's good that you have a pedi who is on board and that you're seeking help for her no matter what the families think of it. Therapies (like early intervention) are the reason my daughter walks and talks. They are so so so very helpful.

Did they tell you how she did on the questionnaire?

I'm Alycia, mama to Carrie and Katie. Carrie is pretty severely delayed and Katie's showing signs of being mildly delayed compared to her friends. Katie is thought to be so because her sister is delayed (not genetically, but she's imitating her sisters delays). Carrie is undiagnosed and we've been told will likely not ever get one.

This is a great board for support Glad you found us!

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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December 28th, 2011, 01:21 PM
Mom.to.PinknBlue's Avatar Platinum Supermommy
Join Date: Jun 2009
Location: Lame-o Illinois
Posts: 12,234
Her pedi just said she had some warning signs and after discussing it further he thought it was best to have her evaluated. We haven't seen an audiologist but it is definitely something I will bring up.
Amelia: Wife to Ryan, Mama to Harleigh, with a boy on the way
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December 28th, 2011, 06:41 PM
MommaLexi's Avatar Adoptive and Foster Mommy
Join Date: Nov 2011
Location: The Desert ;)
Posts: 587
I just wanted to give you I have an autistic foster son. Both of my foster kids have differing Sensory Processing Disorder. Avery had FTT and has FAS. Alyssa is severely hearing impaired, my daughter Avery is moderately hearing impaired, and I myself am deaf in one ear and moderately impaired in the other. I would definitely encourage you to have an audiologist assess her. 12-24mos is usually when hearing problems are noticed, and I see several signs of hearing loss in your post. Good luck in the road ahead, I will be praying for you!

FD ~ Squishy, 8mos old, Down Syndrome, Heart Disease (post open-heart surgery)
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December 29th, 2011, 12:38 PM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
Posts: 3,593
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This is definitely the right place for you. Danny has various system issues that have various diagnosis but no connections. Gi, respiratory, allergies, hematology, etc... (((HUGS))) You may face a long road ahead but it will be worth it as long as you stick to your guns.

Thanks .:Shortcake:. for my GREAT siggy.

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January 4th, 2012, 09:00 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
I just wanted to say Hi and welcome to the board. I'm glad you found us, though I'm sorry you needed to. I hope the evaluations go well. (or did go well?)

I'm Anna btw. I have 4 girls and my youngest Ellie has multiple special needs.
Looking forward to getting to know you.

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