special needs roll call - Page 2

[Momsteader]

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.

[Momsteader]

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?

[Delilah]

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

[fullofgrace]

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...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. 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. I also have a 5mo who is typically developing, actually kind of advanced.

[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.