Welcome to the Special Needs Board. This is the place to Vent, and share Triumphs. Now matter how big or small. I know that great strides are to be rewarded and sometimes just seeing their name on a board message garners huge smiles. at least for mine it does. =)

So Feel free to share here.

Lets all learn and support each other.

~Aurora

Do you know anyone who has done a sleep study? I know that we will be spending the night with monitors and I need to be there also. But What all does it entail? I just hope that it goes well.

~Aurora

My daughter had a sleep study. She was hooked up to various equipment. A tech watched her all night long from a camera.
I slept in another room (not recorded). The tech took care of my daughter throughout the night. I slept really good! I was thinking that tech could come home with me any night ;)

Amy
The Zoo

P.S. Good idea on the group :)

Yep what she said. I went through a sleep study and they hook you up to all these little wires.. not painful at all. They are self stick connectors, so they just hook them on. There's a and that goes around your chest to monitor breathing. Then you get to sleep in a really comfy bed while they video tape you all night long.

Sounds interesting. I wonder if my little guy will co-operate. we shall see.

~Aurora

Well the sleep study is done. It went well except for the oxygen in the nose. He kept ripping it out. But they said he had some good sleep cycles. So it sounds good. The doctor will give us the full results at the follow up. Thanks for your info.

He still has little sticky spots on his face from the tapes sticky that just will not come off. ;)

~Aurora

We received a letter in the mail today telling us to make a follow-up appt. with our pediatrician. We are being referred to an ear, nose, and throat doctor. Hmmmmm.....probably for his tonsils and adenoids.

~Aurora

My niece (14) had hers out when she was about 5. It made a world of difference!! :))))))))
No more ear infections & a lot less colds & respatory infections!

No more ear infections & a lot less colds & respatory infections!

How often did your niece get ear infections? My daughter tends to get them alot, but so far the doctor doesn't seem to be worried about it.

It was so long ago, I don't really remember how often, I do remember once they were out, she was a heathier kid :)
Ask for a referral for a ear, nose & throat specialist. Doesn't hurt to ask, right?

I am so angry I could cry. I fell like I am defeated, so I am on a vengeance. The Mama Bear in me is ready to fight the big bad insurance company.

We have been going for so many tests lately to figure out what a diagnosis for my son. He has been in Physical Therapy on and off for the past 5 years. (he is 6) the last session being is Oct. - Dec. Then we had an appt. with MDA and a whole plan of attack. SO, he was given a very in depth evaluation. It was stressed that he definitely needs Both Physical and Occupational Therapy.

SO the results get sent to our Insurance for a referral. We were Denied!!! I cannot believe it. So I call and ask for the reasoning behind it. They said that there was no injury, and they do not cover Developmental Delays!!!! What?! Since when?! So I ask what has changes since Dec. He was covered then. I was told they cannot answer that. UGH!!! You know your school should take care of that. ok...he does get 1/2 a WEEK for occupational Therapy. (cutting paper with scissors)
But what school provides Physical Therapy? unless they count Gym class. That to me is not specialized therapy. The kid NEEDS help. Geez! This just has me so angry at the moment.

Stewing...
~Aurora

Can you file an appeal? Or speak to management? To insurance companies, you/we are just another person~ no compassion for the situation. I dont have any experience in fighting insurance companies, hopefully somebody else can point you in the right direction. Hang in there-if we don't advocate for our children~no body else will. Are you also working with the district's child study team?

Hi!

I'm new to this board. I'm a special educator (and LBer :) ) in MA, who has a son with a seizure disorder and mild learning disabilities.

I read your post about PT in the schools. Definitely check into it with the special needs director for your school district. Physical Therapy is offered routinely to those who meet the criteria in our schools the same way that OT and speech therapy are. Hopefully it will be in your area too.

Also, double check with your physician to see if an actual diagnosis was submitted to your insurance provider. It never hurts to have them double check the paper work on their end. If a claim is not submitted correctly, it can also be denied. Just thinking out loud...

Good luck and keep advocating for your little guy! It sounds like he is a lucky to have you for a mom!

-=MomNGirl :-)

Just ran across this board & thought I'd stop in & say hi. My oldest son Justin, 15, (aka Dr. Findit) has Asperger's Syndrome as well as mild Infantile Cerebral Palsey. He also has only one fully funtioning kidney; the left one works at around 2%. Quite the complicated birth, that one... A lot of challenges in the early years, but he's turned out to be a wonderful, lovable, caring person, and when I grow up I want to be just like him. I couldn't be more proud of either of my sons.

I wanted to post here and share a link, just in case someone hasn't already seen it. It's a piece called "Welcome to Holland", and it showed up just when I needed it most, as a first-time father facing the unknown challenges of raising a special-needs child.

http://www.journeyofhearts.org/kirstimd/holland.htm

-Ace Blazer

Thanks for posting going to read it now. I need all the inspiration I can get at this point we have hit a stone wall and see now way thru. I am praying everyday that I will find a way to get my son the help he needs even with everyone else saying no.

~Aurora

A very insightful piece of writing....thanks for sharing!
I say: enjoy the smell of the flowers, the beauty of the windmills and don't be afraid to 'tilt' at them when you need to!!!
~C~

And rightfully so! We've been through the same thing- and they kept pouring salt into that wound. We'd go to the specialist, they'd say "You need _______. And it shows your insurance pays for it." Then it wouldn't. At one point we had a BCBS "TennCare" (Tennessee's medicare-waiver disability insurance) as a secondary insurance. All they needed to approve speech and OT was a denial from our primary insurance- also BCBS. They didn't cover autism services, so they wouldn't approve it. Since it wasn't in the policy, they also wouldn't issue a denial. Same company administering 2 policies on one child. One company receiving two premiums on the same child, and passively refusing to pay out on one, and avoiding pay out on the other.

Good Morning!

I am trying to earn donations towards my third jump for the Polar Bear Plunge for the Special Olympics! If you are so inclined, I would appreciate your support!

Just copy and paste this link:
http://soky.kintera.org/faf/donorReg/donorPledge.asp?ievent=999506&lis=0&kntae999506=B0A0C57D58BF421D900A574D452B3E99&imgname=Account403222/images/999056_121011733471583.jpg&getMediaFormat=image&view=preview

Thank you,
Captain Sunshine

Are there any of you who collect LTCs? I have some extra Autism Awareness LTCs leftover from a tracker I participated in. The stamp is a hand-carved Autism Awareness ribbon. I thought of this group right away tonight!

ASL Girl

I haven't read the book but one remark that rang true was "beware of success"... 'oh my gosh! this is working!".... and then that little taste of 'normal' goes away....

http://www.navautism.com/we-had-a-great-time-on-great-day-fresno/

~C~

Since I am on the Autism Spectrum, I always enjoy listening to news clips or hearing new books about ASD's. (Autism Spectrum Disorders). Thanks so much for posting this, chunna!!! Very interesting!!!!!

ASL Girl

Just saying hi!
If you've seen my posts in kid shenanigans, you know I'm in the middle of some drawn out drama with the school. Which is unfortunate because I loved our elementary school so much...everything but the therapist. I'm learning that probably everything she told me over 4-5 years was not actually true. :-( And that the rest of the staff should have known that things weren't 'normal'.

Dd has generalized anxiety disorder, HF Aspergers, functional abdominal pain and headaches still under evaluation.

Oh no, that is so sad that all that time and energy is questionable. I hope that you find the strength and help that you need for your daughter. Too bad not any of the staff gave you a heads up.

~Aurora

Hi Uncorny Acorns!

I also have HFA/Asperger's Syndrome, along with a couple other things such as generalized anxiety and a tic disorder (different than Tourettes). I remember my parents struggling through the elementary/middle schools years, advocating for me til they were about ready to drop over in a heap! I'd say the best thing to do is keep on advocating on behalf of your DD, and never, ever give up, especially since you're the parent and know firsthand what goes on with your child. These battles can be tough, but by sticking it out and seeing them through, you're helping your child so much more now than they may ever realize, until looking back and seeing all the work you went through on their behalf just to make sure they got a good solid education with the services they needed. How old is your DD? I was diagnosed with HFA/AS at 3 yrs. old, but still there were lots of hurdles for my parents to jump through and overcome educationally in many facets and areas despite the early diagnosis. Also, living in Minnesota, my parents were/are able to make use of the Autism Society of Minnesota, which has and continues to be a HUGE resource for us and others around the state and parts of ND, SD, IA and WI.

Hope this helps!!!

ASL Girl

Get a second opinion. Anxiety is life halting. There has to be somewhere for her to get help. Have you told the school counselors about her so they can be of some assistance? Just a thought.

I hope that you can find someone to help her. That is so sad. and I am sure so disappointing for her.

~Aurora

Medications could be an option if you were to go that route. I hope that she is able to succeed in going to activities, events, etc.. at some point in the future. I can only imagine how difficult this must be for her, knowing what she wants to do but struggling with the anxiety preventing her from doing it.

ASL Girl

Thanks, we resorted to medications awhile ago and have been adjusting them, that's part of what's so frustrating to me. I guess it's partly her tween hormones kicking in and causing problems. But, after working with so many doctors and using our savings...it seems like we shouldn't still be losing ground.
I've even gone to the local parent support organization. They looked at me like I was talking a foreign language. I guess Atlasquest wouldn't be the place to find a larger sampling, but I'm hoping somewhere on the internet are a few people who have an idea of what I'm talking about and ways to help.
It used to be hard for her to go; but she would. It's just the last 3 months she's felt like she needs to stay isolated.

Without knowing about specific situations I would say stick with activities that she has felt comfortable with in the past, even if she has anxiety with them now. Talk about how much fun she had before. Maybe invite a (supportive) friend that had enjoyed the event with her in the past.
Is it possible that there is too much "buildup" to the event? Maybe a "spontaneous" outing would not give her enough time to think about it so much.
Is there a time that she can do a certain activity without an audience? (Say she's anxious about going to the grocery store. Could you possible take her in the middle of the night when there are not as many people there? Once she gets use to this, move your visit to a time when there are a few more people...)

Don't know if any of this is helpful or even applicable, just thinking out loud.