Long intro

iVillage Member
Registered: 03-26-2003
Long intro
8
Fri, 04-18-2003 - 1:57pm
I am a 42 year old SAHM who lives in NJ. I have 1 child who is our miracle child. I had him the day after my 38th birthday. Nice present huh? He was born by emergency c-section after an induction. The cord got compressed and his heart stopped. Shortly after birth he aressted due to severe hypoglycemia. He spent 8 days in the NICU. He has always been delayed in his motor skills and recieves OT & PT weekly. He also went to a feeding clinic for swallowing problems. Gary has reflux, hiatal hernia, compacted bowels, asthma, and recently had sinus surgery. He is an extremely cute and extremely bright cxhild. He is wonderful around adults and is a big flirt. However when he is around his peers he is very uncomfortable, almost fearful. He has been reading since 2 and has an unbelievable memory for things like names, addresses, phone numbers, etc. He can't tell you what he did in school today though. He has very strict adherence to time and schedules. This is a problem for both me and my husband. LOL! He is obsessive about routine and tokk forever to toilet train and wean from a bottle because he hates change. I am posting the summary of his last visit with the developmental ped. I am hoping our story is familiar to somebody. Gary was in EI until he aged out at 3 years old. Our shool system turnied him down for services telling us smart kids don't have special needs.

Gary is a 4 year 4 month old boy with static neurological

impairment of undetermined etiology. Manifestations include

hypotonia, with significant fine motor and gross motor incordination.

He had significant difficulty on visual motor and graphomotor skills.

Although aspects of his language are at and even above age level,

there are weaknesses with pragmatic language skills and there are

social skill weaknesses. I explained to his mother that some of these

findings are suggestive of a degree of Asperger's syndrome. I am

hopeful that there will be significant progress and improvement with

interventions. I feel that he would benefit with special

preschool programming with emphasis on social skill development and

improvement of pragmatic/conversational language skills.

Karen

Karen

     

iVillage Member
Registered: 03-26-2003
In reply to: gwsmom2000
Fri, 04-18-2003 - 6:11pm
Well now the fact that bright kids don't have special needs is a load of malarky. Are you going to try the school system again with the new info from the doctor? I hope so and I hope it works out better this time around. I have had similar problems with getting help for my 2nd child and it is very frustrating.

Welcome to our board and it is nice to meet you.

Renee

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iVillage Member
Registered: 03-26-2003
In reply to: gwsmom2000
Sat, 04-19-2003 - 4:43am
Your ds sounds a lot like my dd, Ayla. She had complications at birth too, though she wasn't taken by c-section. She was almost 3 weeks overdue and very tiny. She sufered from grand mal siezures right from birth, and they continued until she was 4. She had horrible fine motor skills (that haven't realy worked themselves out yet) and gross motor skill delays too. She didn't walk until she was almost two and didn't potty train until she was 4.

But she was reading simple books at 2.5 and delving the dictionary at 4. She has an increadable memory for event sequencing and chronological orders. Her part of her bedroom (she shares with two sisters) looks like a hurricaine hit it, but she knows where every single scrape of everything is (I wish I could say the same about my room LOL). She is now 12 and in the 9th grade. She speaks 3 languages fluently (English, Spanish, and German) and is an avid reader (still likes to cuddle up with the dictionary).

She has very few friends......well, outside of her sisters (she has 5) she only has one, and he is her boyfriend (sorta). She has a really hard time getting along with other kids her own age. She does okay with adults if she is speaking to one who knows that she has PDD. In reality she doesn't actually want friends per-say. We used to think that she was just very shy and sensitive and that she didn't want to reach out to other kids because she was afraid of getting her feelings hurt. We have learned that this is not the case. She really doesn't like kids her own age and she really is happy being left alone with her books. This doesn't mean that we don't have her in social skills training. She has had social partners, gone to Miss Manners classes, taken Dale Carnegie Training, etc. She can be very polite when she wants to be now, but she rarely actually WANTS to be. LOL.

I hope you get things worked out with the school. We homeschool all of our kids so I really can't give you any advice in this area, other than to do what you already have.

Best of luck. Looking forward to reading more of your posts,

Candes

Peace,
Candes  
Avatar for maresgood
iVillage Member
Registered: 03-27-2003
In reply to: gwsmom2000
Mon, 04-21-2003 - 8:07pm
Hi, welcome to the board, I'm new here too. If you get a diagnosis from the peds or a psychologist, the district has to provide you with sp. ed services. I am jumping through all the hoops this year & my dd is 10. The earlier you get a diagnosis, the sooner he will get the help he needs & won't have to struggle in school. My dd tested well on her battery of testing last yr. & this yr. too, but her performance is low. Don't let them give you the runaround. Good Luck! MaryAnn
iVillage Member
Registered: 04-26-2003
In reply to: gwsmom2000
Sat, 04-26-2003 - 4:33pm
Hi! I haven't been on the board for a year. Your son sounds exactly like mine and should absolutely continue with early intervention! My ds is 7 now and was diagnosed with PDD. When my ds was four, he finally potty trained, he only wanted adult attention, he read on a first grade level. Your ds needs to continue with therapy for his fine and gross motor skills alone! Plus he needs to be around other children for the social skills. When my son turned three his services moved from our home to an EI preschool. You need to talk to the right people! Your son should always be entitled to special services!

My son excells in school, but continues to have some behavioral and attention problems, but he as a 'wrap-around' who stays with him in the classroom to keep him in line. Good luck with everything--you're on the right track!

Christine
Avatar for kingalex
iVillage Member
Registered: 03-27-2003
In reply to: gwsmom2000
Sat, 04-26-2003 - 7:51pm
Welcome, Karen! By all means, Gary should be eligible for special services with the school system! My son, Alex (just turned 6 on Thursday), who was diagnosed as high-functioning autism (as far as I'm concerned, he's Asperger's - the Autism Specialist in the school system sees them as one as the same). He was an early talker, late in all motor skill activities, i.e. walking (still won't pedal a bicycle), and has an incredible memory. He can tell you every make and model of car he sees on the road, as well as capitals of world countries. He remembers things that the 3rd grader I watch after school has no clue about. He still isn't potty trained - he'll stay dry ONLY if we TELL him to go to the potty on a regular basis, but won't poop in the potty.

Fortunately, Alex was diagnosed at age 3, and was eligible for a special education preschool (which he attended part-time in addition to another preschool). He is now in a regular kindergarten class, but has a resource teacher with him about 30 percent of the time. He also receives OT and PT services. He tries so hard to socialize with others, but doesn't always know how to do so appropriately. I'm so afraid about 1st grade next year, as it is a full-day, and the potty training isn't yet complete.

Okay, I could go on and on about my dear Alex. BTW, I consider Alex my miracle child also - I was 40 when I had him - my only biological child (I have 2 older stepchildren). They're so special, aren't they??

(((hugs)))

Laurie

Laurie

iVillage Member
Registered: 04-27-2003
In reply to: gwsmom2000
Sun, 04-27-2003 - 3:35am
My son was just diagnosed put into special Ed for aspergers and put into the school's gifted program in one fell swoop. So any suggestion that intelligence means you don't qualify for services is hogwash, though I have heard this from other parents too (maybe the key is you have to be dysfunctional in school?). I think the preschool angle is different though--I'm not as familiar with these rules and things may vary from state to state.

I would recommend you get in touch with your local chapter of PACER (see their website at www.pacer.org.) This is an advocacy group for special ed run by kick-ass parents. They will tell you what the rules are in your state and how to advocate to get your kid the services needed and stick with you every step of the way. Good luck.

Deb

iVillage Member
Registered: 03-26-2003
In reply to: gwsmom2000
Wed, 04-30-2003 - 10:38am
Deb,

Thanks! I have the name of an advocate from one of Gary's classmate's mothers. She has been dealing with the school for a long time with an older child and developed an ulcer. She says this advocate really saved her. I am waiting for the school to respond to my request for reevaluation before I call. Hopefully soon!

Karen

Karen

     

iVillage Member
Registered: 03-26-2003
In reply to: gwsmom2000
Wed, 04-30-2003 - 10:41am
Laurie,

I loved hearing about Alex. Gary's PT made velcro straped for the pedals so he can ride. He still needs to be pushed to start and can't do hills but we are making progress.

Karen

Karen