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 :crying -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 (http://mothering.com/discussions/forumdisplay.php?s=&forumid=157)

[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. :hippie

[Missgrl]

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

[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.:p 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:rolleyes: ) wonderful with him,and loves to teach him.
Lisa in RI
SAHM to homeschooled Kasia(5 in 9 days!) :dust ,Gabrion (22 months,unvaxxed,intact,silly coocoo nut!):nut , Mommy to 5 feline furry babies-Muldey,Ba-ba,Baby,Silky,and Jibbey,and wife to Billy:couple

[Carolinamama]

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/

:wave

[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....

[CrunchyClark]

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!!!

[CrunchyClark]

<<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?

[CrunchyClark]

Nope, my younger son. He's still an asthmatic, but we recently weaned off most meds for the summer to see how he does. He's 3.5, so it's been 2 yrs since he had that horrible hospital episode.

Luckily, my ds with Asperger's is EXTREMELY healthy medical wise. We can all get colds and he rarely catches it.

[SunRae]

My son Samuel is six months old and has Down Syndrome. He has the Tetralogy of Fallot and has had a BT shunt installed to help him stay oxygenated until his heart defects are repaired when he is about one year old. It will be open heart surgery (again), only much more complex and terrifying next time. Not that it wasn't terrifying the first time (he was two weeks old).

We are receiving monthly home visits from a physiotherapist and an Infant Development Specialist. When he is older he will get speech therapy as well. So far Sam is developing normally and is such a beautiful, happy baby. We will start doing a couple of signs with him next month. El, what is PEC?

Sammy is our first child, which I am glad for as we are able to entirely focus on his needs and development at the moment. I don't know how we will handle it when we have more kids, but I guess we'll worry about that when it happens (that's becoming something of a mantra for me...we'll worry about that when it happens...not my natural style at all!)

Rachel

[khrisday]

Rachel,
PEC's stands for Picture Exchange Communication, it is another communication system. Very popular for kids with Autism or other special needs.
This link has a prety good explanation
http://www.polyxo.com/visualsupport/pecs.html

[LaLaLuna]

Originally posted by CrunchyClark

Luckily, my ds with Asperger's is EXTREMELY healthy medical wise. We can all get colds and he rarely catches it.

Hey, mine too! What's up with that?

With your asthmatic son; do you guys use a peak flow meter with him? It might be a good thing to keep track of how he's really doing asthma-wise; you might not realize he's deteriorating until he goes into crisis but with a PFM you can kinda keep track of his lung volumes and see whether they're diminishing before he starts showing symptoms.

[CrunchyClark]

Originally posted by LaLaLuna
With your asthmatic son; do you guys use a peak flow meter with him?

He's only 3.5 and the pulmo says he's too young to use it acurately, same with a rescue inhaler. We are going to try again in the fall. He's really into swimming, and is taking lessons again this summer. If he can master the come up for a breath of air and then back under again while swiming thing....the pulmo thinks he'll be able to do the PFM/Inhalers. At the last appointment in May, he just couldn't grasp the whole concept of taking a breath and then blowing it all out through his mouth or how to breathe to get the med via the inhaler and spacer.

[mommy2boys]

nak,
hi, new to this board. Just found it. I have a 3 year old who is still in the diagnosing process but we have found out so far he is has high functioning autism. That's about all we know about the official diagnosis. He has a speech delay which he is in therapy for and improving very nicely. He also is overly emotional and will have huge meltdowns over the strangest smallest things. I have known for a while that not everything felt right, but sadly listened to others saying he is fine, just slow in talking or all kids have tantrums (but do all kids tantrums last an hour and involve injuring themselves purposely). Sade plays in funny ways too, he lines his matchbox cars up perfectly in order either by color or biggest to smallest.
Like I said i am still really new to all of this. I never thought I would be relieved at a diagnosis. At least now we know more about how we can help him. I don't feel like I am such a horrible parent who "can't control my child" as much anymore. Anyway, just saying hi. I have lots and lots of questions, but they can wait for now, I am still doing lots of research.

[khrisday]

mommy2boys,
welcome! Here's a very informative site:
www.bbbautism.com

[jdross]

Hi everyone-I've been posting off and on for a year or so. My ds, who is 8,
has been recently diagnosed with PDD-NOS, non-verbal learning disorder,
and possibly bi-polar disorder. I need help! For years we have been working to understand ds in the context of the waldorf school community, never really feeling satisfied with the interpretations of his "behavior". We finally sought help and support from a very caring psychologist, and feel we are on the right track. Question: does anyone know of autism spectrum support and services in the Sacramento area? How 'bout play dates for moms who need to laugh?:jaw

[Delilah]

six year old son with PDD; 4 year old with speech delays.

[aoife]

toh but wanted to say hello. I have 3 children. My 2 girls have special needs. They are both labeled PDD-NOS (high functioning).

[mlia]

Hi I'm Leah and I have a 9 month old named Salem with heart problems. Her biggest issue is hypertropic cardiomyopathy where basically the heart muscle just works too hard and thus thickens. She is on a beta blocker and we do routine echos and ekgs to make sure it's still working. She also has pulmonary stenosis, a mytral valve leak and a VSD. The pulmonary stenosis may cause a need for surgery later.

http://www.besthearthealth.com/heart.nsf/diseaseswebview/hypertrophic+cardiomyopathy

Because of her heart problems and a couple of physical markers she is being screened by a geneticist for Noonan's Syndrome. The geneticist saw her at 6 months and said she had a couple of markers but not a lot and we go back to be re-evaluted at 1 year. Unfortunately they don't have the genes isolated that causes Noonans so it's a purely clinical diagnosis.

http://noonansyndrome.org/home.html

[DisaCherie]

Hello, I'm new to the boards.

I've been told my son is considered special needs, but not due to any physical problems, but behavioral problems. He has had severe behavior problems due to his having been abused by two seperate individuals by the age of 4. He's now 9yo. We've dealt with things more along the lines of violence, severe social problems, emotional trauma, acting out sexually towards other children, extreme defiance, rage, etc, etc, etc. When he attended school last year there was a debate about his attending a special needs class, but becuase he had been exhibiting improvement they decided to try him in the regular classroom, where he stayed despite having alot of social problems. NO VIOLENCE which was a great improvement! We are now going back to homeschooling this next year however. He is not able to function properly, emotionally or socially, in a classroom environment. I tend to not think of him as special needs, but he is very much high needs.

Disa

[mamabean]

ds is 2y.o. dx shortly after birth with renal insufficiency secondary to posterior urthral valves. progressed to end stage renal dieses at 10 months(started dialysis).failed transplant at 24 months(my kidney)and is scheduled for transplant # 2 on 8/7!

[jempd]

I have a 4 year old son who is about to start in a classroom that is made up of the highest-functioning group of kids at a school for kids with special needs.

The only diagnosis he has is Sensory Integration Disorder, and his latest evaluations came up with him being delayed in social skills, speech, and having low-tone which is pretty much what they've been showing since he was 18 months old. He will be starting play therapy soon, and I have a lot of hope for that to really help him with his interactions with other children.

[iris0110]

I have a 4 yr old son with a speech delay and Sesory Integration Disorder. We are still trying to figure out everything that is going on with him, and trying to get an accurate diagnosis and assistance for him. When he was little he recieved wonderful therapy through the early childhood intervention program, but has since aged out. Now he is recieving Speech therapy through the school district who have him listed as PDD NOS and we are having to pay for Occupational therapy for him for the SID. He still needs Feeding Therapy, but we can't get it for him right now. I recently discovered that the school should be providing his OT and possbily also feeding therapy so we are in the process of trying to sort that out.

[nitareality]

Hi. :shy I mostly lurk here. I have a 12 year old son with CP, who is also blind, non verbal, has seizure disorder and is g-tube fed due to reflux and dysphagia. I have an eight year old daughter with FAS/RAD.

[skaterbabs]

My 9 yo son has a dx of ADHD/ODD + other depressive disorder not specified.

[buttercup]

Hi. I have 1 3 yr old dd with autism and SIDs and a 1.5 yr old ds with language delay and some oral sensory issues.

[srmina]

Hi, I have a 2yo with cerebral palsy secondary to oxygen deprivation (HIE) after a signficant in utero bloodloss from a ruptured umbilical cord.

OMG, I can't believe I just wrote a sentence like that! :LOL

Anyway, as I said, she has CP, a Gtube (about 60% fed by tube, 40% oral), really complex and previously severe GI issues, visual impairment, and equally weird seizure disorder. She's one of only a few kids to ever survive this kind of cord accident so everything with her is a little atypical... She's also a wonderful loving kid who appears to be pretty bright. :thumb I also have a 5mo who is typically developing, actually kind of advanced. :love

[veiledexpressions]

Hello,

My two year old daughter has hypotonia with global delays. She has a 75% gross motor delay, 50%+ cognitive delay, and nearly the same in fine motor delays. There is a possibility of this being a vaccine injury (DTaP), due to the timing of appearance of her hypotonia, and her high fever after her 2 and 4 month shots.