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Does my child have a disability? plz read update, I need a hug

post #1 of 42
Thread Starter 
I am a worried new mom. I have nothing to compare this baby with. MIL has some concerns about her. What are the steps for me to take to ensure my child's well being? I was reading that the earlier something is detected the better the outcome.

My daughter is 14 months old. She was born 6 weeks premature and was in NICU for 16 days on oxygen meds, oxygen, feeding tubes, jaundice lights etc. I have chronic fatigue, undx fibromyalgia, interstitial cystitis (autoimmune condition of the bladder), hashimoto's disease (autoimmune hypothyroidism). I do not drink, smoke, do drugs. I was on a gestational diabetes diet before she was born and had it and pre-e (liver). She has not had any shots. She has had the flu/cold like 4 times. She has been to all her wellcheck visits. When asked about her flat head the doctor would just say hush she's beautiful! Which is great but not helpful.

This is what I am seeing...
She does not point for any reason. She will reach up to be picked up though.
She doesn't speak but she does babble. She does say mamamama but it's not to ME.. it's just in her babblings.
She does not respond to her name.
She won't look if you make a loud sound next to her ear. I know she can hear because a few times she will flinch and if done enough she might turna round and scouwel breifly before staring at whatever again.
She can watch tv for 20 hours straight and not move. (That wasn't in my game plan for tv at all but it's been a huge battle with her father who just wants her happy)
She won't make eye contact. Only recently have I caught her looking into my eyes and she immediately looks away. She won't look into anyone's eyes for more than a second.
She scratches everything. She pulls hair and bites, but I'm working on it.
She refuses to hold her bottle (but she scratches it)
She refuses solid foods. Purees are fine. Ex. a pea skin got in her tummy so she threw it all up. No fussing just throws up anything solid and moves on with life. Only the last few weeks she has tried to lick a banana on her own. It's not successful but it's a huge accomplishment for her. She can't get it into her mouth but she's trying. There's a lot of drooling involved and spitting but it's something. Of course she then spits it out as it's a solid. I try to get away without completly mashing her bananas and she'll gag and spit it out.
Rarely plays with toys. Can not put donuts on ring nor has any interest in doing so.
excema.
Her head has a flat side. On her left. She does not sleep on her back but her stomach or jumperoo (rainforest fisher price).
She isn't walking yet. Just recently she has stood by herself for a few seconds.
She is constantly rocking. When standing or sitting she rocks sideways. Not always but nearly always.
She is an "easy baby" only cries when hungry but make sno motion for a bottle.
She has no fear of strangers and treats them as if they were mom or dad.
Only in recent weeks has she begun to fuss when put down.
If she does play with toys it's shaking it only.
She has been on a gluten free milk protien free diet. Started milk now and she is contipated now.
In the last 4 months she's only gained 1 pound 19.8 on my digital scale (though it's hard to weigh). She does have a belly and doesn't look thin or anything.
About 1 week ago she learned how to clap. (seems that is very delayed)
She doesn't know body parts or any language it seems except arms up.

Her grandma is very concerned about the lack of eye contact. She never looked at someone until about 1 year and it's very brief and if you demand her to look (like chase her viewpoint) she will roll her head around to avoid it.

I was reading the sooner you find out the better chance you have at teaching or whatever the steps are to take in life.

The ped said nothing and he counted mama as a word and didn't seem concerned at 1 year appt.

Hubby refuses to see it but when MIL agreed.. just the fact that someone else is noticing these things has me in a puddle and anxiety high.

What are the next steps I should take? What are the appropriate questions to ask the doctor to get him to understand what I am trying to say or do I need to go yet? Do I skip a pediatritian and go to someone else? Is it all pointless until she's older? Does this sound normal to you?
post #2 of 42
Thread Starter 
on a side note we've been ttcing and is this a bad idea? Am I a bad breeder and should not? I don't know what I am doing wrong or did wrong ; ;
post #3 of 42
Call your local childrens hospital and ask how to get ahold of early intervention, or early steps. ((hugs))
post #4 of 42
Quote:
Originally Posted by babygirlie View Post
on a side note we've been ttcing and is this a bad idea? Am I a bad breeder and should not? I don't know what I am doing wrong or did wrong ; ;
and don't think that way. Every child is a blessing.
post #5 of 42
She could have something serious happening, or it could just be a delay due to the prematurity and circumstances of her birth. Either way, it probably wouldn't hurt for her to be evaluated by early intervention. Even if she's just experienceing delays that are to be expected due to her prematurity, she might qualify for services/therapies/etc to help her catch up.
post #6 of 42
When I had concerns about my dd's development, I found the pediatrician unhelpful. She was very reassuring, but, in my opinion, dismissive of my concerns. Early Intervention, on the other hand, were rock stars.

If you are in the US, I would strongly recommend looking up Early Intervention for your state and referring your child for an evaluation. They will contact you and set up an evaluation within 30 days.

I don't think this should have any impact on your efforts to ttc at all. None of the concerns you describe sound like they are the result of "bad" parenting.
post #7 of 42
Honestly, that doesn't sound normal. Not all of it, but things like the no eye contact, rocking, watching TV without moving, not responding to her name...

I don't know that she has a disability, but she may have some delays; either way, I would recommend getting an Early Intervention evaluation and get some speech and/or occupational therapy initiated if they deem it necessary. The sooner the better.

post #8 of 42
Quote:
Originally Posted by babygirlie View Post
on a side note we've been ttcing and is this a bad idea? Am I a bad breeder and should not? I don't know what I am doing wrong or did wrong ; ;
Oh, heavens no! Please don't ever think such things.

But, yes. I'd have her evaluated. It sounds like she could have some issues. It doesn't make her less wonderful and amazing though. Sometimes an evaluation clears up some of the mystery.
post #9 of 42
Quote:
Originally Posted by stik View Post
If you are in the US, I would strongly recommend looking up Early Intervention for your state and referring your child for an evaluation. They will contact you and set up an evaluation within 30 days.


It has nothing to do with being bad "breeding stock" or you doing anything wrong health-wise. Many mamas with SN kids did "everything right" in their pregnancy.

The only reason I would carefully consider the TTC thing is if you think you would be overwhelmed doing lots of therapy with your DD while handling a pregnancy/new baby at the same time. (Maybe at least wait till she has been evaluated, to see what's required for your DD.)
post #10 of 42
Hugs to you mama. These ladies offered a great suggestion, Early intervention, or also called Birth to Three. From there they can gather information and point you in the right direction.
post #11 of 42
I know how frustrating it can be to know you child is not developing normally and not getting any help from anyone.
My dd is 14 months old also and acts a lot like you describe your daughter. Although she does have other issues such as global delays, she is profoundly deaf, and has trouble seeing. She also has some brain abnormalities that nobody can explain but they don't think it affects her development.
With that being said, we have 27 different doctors and therapists we see. And not ONE of them can tell us what is wrong. Our pediatrician is especially frustrating. She basically just tells me she's not normal (obviously I know that) and sends me to more doctors.
However, we do use our early intervention program AEA and love them! They come to our house which is great! and we also don't have to pay for it since she qualifies for their services. Her Physical therapist and occupational therapist have helped her TREMENDOUSLY.

I actually spoke to our OT today about dd's sensory issues. She beleives she definitely shows signs of sensory processing disorder. She cannot diagnose her but even with a diagnosis she says we are already doing everything in OT and PT that they would with that diagnosis. So it is nice to know she's already getting the help she needs with that.

So I definitely recommend looking into a program near year. Another option is visiting a developmental pediatrician. (ours are actually nurses) We didn't have very good experience with ours, but they will at least know where to send you to get the help you are looking for.

I hope things get better for you. Just remember a lot of things like that are age appropriate, and some kiddos just do things on their own time. My daughter just learned to sit by herself last month.

If you ever need to talk feel free to PM me! Hopefully you can find someone to look into your worries.


P.S. I just reread your post and my dd also had torticollis and plagiocephally (which is a flat spot on one side of the head) she had to wear a helmet for 5 months and now it is perfectly normal shaped. You may ask your pediatrician about that.

Also, look into getting a hearing test done. Even if she can hear she may have some degree of hearing loss that may be causing a lot of these things. It's always a good thing to have checked out!
post #12 of 42
Any of the things you mentioned could be a result of just needing to catch up due to being born early, could just be normal for your child and take her a bit longer in the development area or it could be something more. If you are concerned (which you obviously are) then I'd contact early intervention/birth-to-three and ask for more information on starting the evaluation process and they can help tell you what you need to do.

Don't beat yourself up. The moms here all have special needs children and none of us are "bad breeders". Blaming yourself or second guessing whether you should have more children based on this will not accomplish anything other than making you anxious and miserable. Even if there is something there as far as special needs, every child is different and having one special needs child doesn't mean you'll have more. Sometimes we don't get the child we were dreaming about and preparing for, perfect in every way "according to the books". We get more than that. We get a child who loves us unconditionally, who challenges us and pushes us to do more for them and ourselves, who awaken a whole new part of us that we never knew existed. Sometimes we get a child who makes us even a better mother and stronger than we could have imagined possible.

Hugs mama!
post #13 of 42
Quote:
Originally Posted by Kristine233 View Post
Sometimes we don't get the child we were dreaming about and preparing for, perfect in every way "according to the books". We get more than that. We get a child who loves us unconditionally, who challenges us and pushes us to do more for them and ourselves, who awaken a whole new part of us that we never knew existed. Sometimes we get a child who makes us even a better mother and stronger than we could have imagined possible.

Hugs mama!
exactly.
post #14 of 42
You should also be able to call your local school district and ask for the child find program. I think you have reason to be concerned. Best wishes and keep your chin up. And yes early intervention is KEY!
post #15 of 42
It ultimately doesn't matter whether anyone, and that includes health care providers, believe what they're seeing is within the range of normal or not. You are the mom. You have concerns on several fronts. It is entirely reasonable to ask early intervention to do an assessment, and in fact, this is a common age for EI to do evals. No one will think anything except that you are clearly concerned, and able to deliniate in a specific way, your concerns.

It's also not uncommon for moms to be out in front with concerns, and partners to be not always on the same page. It's OK-do what you need to do for your baby. There is absolutely no downside to asking for an eval.
post #16 of 42
many pieces of good advice! Definately call Early Intervention. I'd also ask your pediatrician for a referral to see an audiologist and a pediatric opthalmologist (I probably spelled that one wrong). So many of the issues you noted could be partly or totally explained by significant hearing and/or vision loss (i.e. rocking is considered a "blind-ism").

You daughter is lucky that you are her advocate!
post #17 of 42
Thread Starter 
I just wanted you to know how much I appreciate your understanding and help. This will help us out tremendously. I had no idea about Early Start and looks like we could do that here. I just had to step away as I was getting overwhelmed? I'm scared but she is my life and she is pretty dang beautiful and adorable. We made some changes to our household like putting a double fence in our living room to encourage movement. I climbed in and it does take her forever to notice me. I spent a good deal of time playing blocks by myself the other day. She eventually saw me and pretended to go after another toy btu really wanted to be closer so she sat there and watched me. Then she would take one scoot closer then another... then she was in my lap and shaking a block (she only shakes toys). Though she knocked my fort over in the process and I spent 15 darn minutes on that thing! :P (just kidding) Then I went to eat dinner and she rocked and stared at the wall which made me sad again. She did stumble walk between me and her dad later. And she even bit a cheese puff gerber thing. Of course she spit it out but hey she bit it Maybe now she won't bite mom so much as I'm getting a little bruised. There was a lot of not so nice discussion in the house.

Ok, I seem to get real emotional here so I need a breather. I feel better now though and am going to find some younger toys that maybe she will figure out. She watched her grandma play with this baby car toy thing and looked interested (she tried to shake it anyway). I think I will go pick up one of those today.
post #18 of 42
I agree that early start is a good thing to look into.

I found a program called Floortime really helpful in learning how to engage my son and interact with him. It sounds like your daughter could benefit as well. I taught myself with a book I bought and there are yahoo groups and such.



I'm going to link in some stuff about metabolics because you mentioned the chronic fatigue and fibro. It might apply to you (did to me obviously!)
http://www.mothering.com/discussions...d.php?t=734501
post #19 of 42
Babygirlie, how great that you found a toy that your dd is interested in!

My dd's issues were very different than yours. She had a speech delay, and now that it's gone it seems like it was a really small thing, but when she was struggling it had this absolutely huge impact on everything she did (and on everything we did with her). The EI people were amazing, and they taught us some ways to help her communicate before she even started receiving services, during her initial evaluation.

I hope things keep improving for you and your dd. Early intervention really can make a huge difference.
post #20 of 42
Quote:
Originally Posted by stik View Post
She had a speech delay, and now that it's gone it seems like it was a really small thing, but when she was struggling it had this absolutely huge impact on everything she did (and on everything we did with her).
This is SUCH an accurate statement! My son had a pretty significant gross motor delay. He didn't crawl until he was 15 months and didn't walk until the week before his 2nd birthday. It's so hard to convey to people who haven't BTDT how frustrating it is to have an otherwise healthy child who is so very different from his peers.

My son couldn't play with kids his own age because they were running and he wasn't even walking. But he couldn't play with much younger babies because he was verbally and cognitively advanced at the time. It was a very difficult time for me because I felt so isolated and was so frustrated just waiting for him to finally decide to start walking. His physical therapist was even frustrated and still thinks of him as the only patient to ever baffle her, because he COULD walk but wouldn't. When he took his first steps, at physical therapy no less, he even said "I'm walking! I'm walking!" Stinker.

And then he got pretty caught up on his gross motor and became delayed with speech! By the time his speech evaluation was scheduled and completed, he had caught up on his own. At 5 he is totally average as far as his preschool teachers and I can tell, and average is PERFECT!

Long story short, we would be nowhere without the physical therapy that DS got starting at 11 months. I don't think he would be walking yet otherwise!
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