special needs roll call

[pie]

Mods, please don't move this thread. I want to get an accurate overview of who at Mothering is a parent of a child with special needs, or has special needs themselves.


My son has been 'diagnosed' with Asperger's Syndrome, a pervasive developmental delay in the autism spectrum. He is brilliant in so many ways but basically functions as a twenty two month old child according to the PEP-R, a psychiatric test. He functions as low as a ten month old socially, in some situations, and as high as a four and a half year old in written language.

He is delayed in all motor skills, social, language and emotional areas.

He is going to be four in August. We will be starting therapies as soon as possible but getting services is proving to be a real challenge.


What are your needs, or your child's? Please share, I want to see how many of us have this in common.

[Tracy]

mamapie, just a tiny piece of info...which you may already know about...

but you might want to check out

www.bodyecologydiet.com

She is working with parents of children with autism and (I think) aspergers.

basically, kefir goes in to help the intestines..and I think probiotics. I know about her through a friend and it just makes so much sense to me in this really kind organic way...when I say organic I guess I mean 'common sense' way that I have told a few people about it. Take a look.

this might be moot as you probably are already on track with something like it.

[Dot.mom]

My 2 1/2 yo dd has sensory processing problems, particularly vestibular processing and ocular motor dysfinction (poor ability to separate eye movement from head movement). She gets an hour of OT per week. I am a pediatric PT and I knew something wasn't quite right when she was about a year old, but it took me over a year to get an MD to take me seriously enough to write a referral. She can walk, but is not safe by herself on stairs (she just looses her balance and can't move and tries to sit down and ends up somersaulting down the stairs). She runs like an 18month old and has a really hard time bonding with her peers in any activity that involves running, climbing, sliding, etc. Other kids have started to notice the differences and sometimes comment -which wouldn't be so bad except she's started to understand what their comments mean.

Thanks for starting this thread Mamapie-I'm also curious who else is here!

[indiegirl]

My dd Violet was recently diagnosed with bilateral moderate loss of hearing. It is sensory neural, meaning it cannot be "fixed" through surgery. She is getting hearing aids on July first. Because of her hearing loss, she has delayed speech and language (19-20 mo level). She qualifies for lots of things within the district (school), but we are not too keen on sending her to a d/hh school because she is so expressive. Once she gets her aids, we really think her speech will take off. We plan on sending her to Waldorf in the fall for three days a week.

Communication is struggle as she has the intellect of a 3+ yo child (and the motor skill of a four-year-old!), but the language of a two year old. We started with sign at 11 mo (not knowing about the loss) so we have a lot of sign--which has been good.

Jesse

[Robyn]

I have a son that will be 7 next month who was diagnosed as having autism just before his 4th birthday. He was normal untill he was 18 months old. His doctor gave him an mmr, dpt, hib, hep-b, and a polio vaccination all in one day and he was never the same after that. He's doing much better as of recently thanks to a good diet, therapy, mega vitamins, and anti-fungle meds.

Robyn

[Els' 3 Ones]

My youngest son, Duncan, has down syndrome. He was 4 in February. He has scattered delays in all areas, the biggest in speech. We are using ASL and PEC system with some very good results. He is in a special ed preschool in the district (good for his social skills - not much else) and gets 2 hours of private speech therapy with fantastic results.

Jesse, you probably already know, with a dr. dx of hearing loss you can get insurance to cover speech therapy. That therapy can be tailored to what method you feel comfortable communicating in. The dr writes a prescription/referral for therapy (I went for 5x a week - just in case) then the ins pays.




El

[khrisday]

My 7 yr old son has Asperger's Syndrome, possibly bi-polar disorder, and now reflux (anxiety, initial onset insomnia, tics, etc)
My 4 yr old dd has sensory integration issues and tics

[Missgrl]

I will leave this thread for a period of time to let members see
it and respond. As I have moved other Special Needs threads and many,
many others to their appropriate forums, I see it only fair to move this one
too.
I understand that TAO is a popular board and that many other specific forums
are "slow." But this is the reason why we ask that all threads be placed in
appropriate forums....so that threads can be evenly placed throughout MDC
and try to eliminate the "slowness." Starting off topic threads is also somewhat contagious and can cause an already heavy board to become overwhelming.

Feel free to place a thread here with a link to another forum if you are
in need of many views and information though....that is perfectly acceptable!

In the meantime here is the link to the Special Needs forum. It is a subforum
in Parenting Issues and not known throughout the boards b/c it can't be seen
on the Main Index page. Special Needs Forum

[LaLaLuna]

My six y ear old son was just diagnosed with Asperger's syndrome and sensory intergration disorder but that's all I know so far... we're still trying to make sense of it and I don't have much confidence in the dr. who diagnosed him so we are going to have further testing done... somehow, somewhen. He's supposed to be getting speech therapy through the school district but as he goes to a charter school it's been a very slow process and I don't see it happening before he gets to first grade. He's also supposed to get OT but I have no idea how or where or what kind. This dr. isn't very helpful when it comes to the nuts and bolts of what comes after the dx.

[pie]

luna what state are you in? I am having trouble getting services too. How about we start a thread about that in special needs? I'll see you there later today or tomorrow.

[LaLaLuna]

mamapie- I'm in OR. I think, though, that this is a universal problem. I've a friend who until recently lived in Albuquerque and has a special needs son and she said the school dixtrict there could move her to rage. She sent me a link to a website that has some resources; I'll dig it up and post it to the special needs site- gotta go take a final right now tho so I'll check in later.

[Missgrl]

Moving this to Special Needs now!
Wishing you good luck mamapie

[pie]

[muldey]

Hi everyone!
My son is special needs.He was born with a congenital heart defect,Tetralogy of Fallot.This basically means he has 4 defects in his heart.It's hard for me to explain,so here's a link.
http://www.heartpoint.com/congtetralogy.html
He had open heart surgery to correct the defects at 2.5 months old.He didn't have the typical symptoms,such as turning blue,so he's what they call "pink tet".His pulmanary valve was removed,and the surgeon did not replace it,because that would guarantee surgeries every 3 years.He may need to have it replaced at some point.we were given an estimate of 20-50 years.He has had a brain MRI as a follow up to a study we participated in during his surgery,which showed his brain size is slighty diminished,as well as some very tiny calcium deposits.His drs aren't concerned,since he is developing ok.He has sensory intergration issues,as well a some developmental delays.He'll be 2 July 13th.He is starting to talk,and has just started to run and climb a little.When he's in his highchair,or carseat,he rocks constantly.He has a very high tolerance for pain.He also has a very high pitched scream,and uses it whenever he is upset.We are hoping when he can express himself better that this will stop.He's on about the level of a 16-18 month old for gross motor,about 14 months for communication,and around 24 months for fine motor and problem solving.He's a very happy and loving little man,but can be quite a challenge.I'm the only one who can calm him when he is upset,and therefor can not find a baby sitter,since no one knows quite how to handle him.He's already hurt himself a few times,once that required staples for a cut on the top of his head. He's very strong and somewhat agressive,although he doesn't mean to be.He likes things loud and rough,you should see him when he hears a motorcycle or a big truck!When he's excited he moves his wrist back and forth,and kind of flaps his arms.We gave him our dining room for a play room,and completly child proofed it so he can run and play without hurting himself,and so Mommy can clean every now and then. He receives Early Intervention,as well as occupationally therapy,both once a month,and will soon start speech therapy.He has a big sister who is (most of the time: ) wonderful with him,and loves to teach him.
Lisa in RI
SAHM to homeschooled Kasia(5 in 9 days!) ,Gabrion (22 months,unvaxxed,intact,silly coocoo nut!) , Mommy to 5 feline furry babies-Muldey,Ba-ba,Baby,Silky,and Jibbey,and wife to Billy

[Carolinamama]

Just an intro...

Hi all. I am a sahm of 2 little boys(ages 4 and 3). My youngest ds is a special needs child. He has been diagnosed with an extremely rare chromosome disorder. He also has global developmental delays, seizures, expressive speech and language disorder, GERD, sensory-neural hearing loss, and feeding problems.
We see an OT, PT, speech and feeding therapist on a regular basis. Of course, he's in the "system" now that he's 3 and seeing only his feeding therapist currently for the summer. He's a great little guy and progressing by leaps and bounds.
I don't know how many parents have children with rare chromosome disorders, but we belong to this organization and thought a link might be nice. http://www.rarechromo.org/

[Becky N.]

Hi, mamas

My little guy Jacob will be three next month. He has sensory integration disorder(mild, way improved), severe verbal apraxia, and I KNOW that he fits somewhere on the high functioning end of the autistic spectrum, though I don't have an "official" diagnosis for that yet.

His speech recently took off in the last 3 months with the use of anti-viral medications and iron supplements (he was severely anemic, don't ask me why the 1,000 prev. drs weve seen couldn't figure that out) He's also been GF/CF but I'm finding out that he's really intolerant to a lot more foods than just that. He got a hold of some french fries that were coated with flour last night and today has NOT been a good day ~sigh~ We recently started seeing a great Dr. who gives us hope--
check out www.nids.net and www.neuroimmunedr.com for his theory on ASDs.

I look forward to meeting you all-- hard to find like minded moms of special needs kiddos!! It's a whole new world of parenting challenges!

Becky

[heartmama]

Another heart mama here! Glad to see you muldey!

Ds is 7. Diagnosed after a homebirth with complex congenital heart defects. The diagnosis has changed over the years but basically...

...the heart has four chambers and one of his (the right ventricle) did not develop normally. It was a fraction the size it should have been, one of the valves in it was non existent, and the other severly malformed. He had a large hole between the upper chambers, small-ish pulmonary ateries, and a leaking mitral valve. He had an emergency open heart at 2 weeks old. Again at 12 months. Again at 4 years old. The condition is called "Hypoplastic right ventricle with pulmonary atresia, ebsteins anomaly of the tricuspid, and ASD". See? that is why I explain it!

Now he is doing great. I feel very lucky in many ways.

My big "issue" is helping parents of hospitalized kids continue to foster and build attachments. I find many hospitals are draconian in their treatment of attachment, and neglect the emotional needs of children to a point that is sometimes abusive. I hope to write a booklet for ap parents dealing with a child's hospitalization.

Peace to all of you and your children....

[Momsteader]

Hey all!

My 6.5 (almost 7!) ds was dx Asperger's at 5.5 (which I understand is a bit young, but I still feel it is correct.). He has also had Sensory Integration Disorder, Anxiety, OCD, and a few others on his chart at one time or another.

We are pretty much 'therapy-free' right now. He reached a real plateau, and experience has shown that therapy doesn't reach him at these times, so we just let it ride.

Things have been going so well lately....it's almost that whole 'waiting for the other shoe to fall' kind of feeling around here!!!

[Momsteader]

Hey heartmama.....

<<My big "issue" is helping parents of hospitalized kids continue to foster and build attachments. I find many hospitals are draconian in their treatment of attachment, and neglect the emotional needs of children to a point that is sometimes abusive. I hope to write a booklet for ap parents dealing with a child's hospitalization.>>

All I can say is..."ROCK ON!" LOL

My baby was a preemie and had RSV at 15 mos. Ended up in the local hospital which has no ped ward, and was just attrocious! Was still nursing him, and the infectious diseases doc tried to tell me I had to gown, glove, and mask around him. I asked exactly how I was supposed to nurse him without touching him. So, I just told him I wasn't gonna do it, and that got us quarrantined for public health for 8 days, but hey...I got to be right with ds.

I think docs/nurses need as much 'teaching' on how to deal with children while hospitalized!!! They just want to treat them like little adults.

[heartmama]

Cruchy Clark, your are so right. It is horrible in some hospitals. Hospitals primarily think and train staff to view the patient as a medical condition.

I could go on, but I'll save it for my book *LOL*

How is your baby now?? Is this the one with aspergers?