introduction

[jess_g]

Hi just wanted to introduce my son to everyone. I posted a while ago on the suggestion board about adding in this forum as I find it hard to post my questions and issues about my son in the lounge since he does not fit in that well and a lot of what I do with him doesn't seam that normal to many folks (like the fact that he went to Target with me the other day and did not bump into anyone or knock anything off the shelfs which made my day). I am hoping there may be a group of moms out there that have similar experiences to share.

My son is a former preemie that is now 10 and doing pretty well. He is smart and funny and happy but he has delays in fine and gross motor skills and speech. He has had so many medical tests done on him but so far they have not found a cause for his delays.

Anyway I just wanted to say hi and see if anyone else wanted to share their story.

Thanks, Jessica.

[sariana]

I would love to share but don't have time right now. I'll be back later!

[Pepper]

Hey there,

I'm glad you suggested this forum - I'm on a couple of different needs-specific parenting boards, but i'm hoping that this one will evolve into a good fit for me, too. DS1 is 4-1/2, adopted from Korea @ 5-1/2 months. His cleft lip & palate were fixed here and he had speech & language delays...as he's gotten older and into preschool, it's become apparent that he has other challenges as well. We are on a wait list to get a full developmental eval but he's hyperactive, impulsive, sensory seeking, a little anxious, and has no clue whatsoever socially (though I personally don't think it's Asperger's since he expresses HIS emotions and needs pretty well).

DS2 is 20 months, adopted from Korea @ 13 months and is just the sweetest little thing ever. Which is good - he doesn't seem to hold a grudge at DS1 at all, no matter what the behavior-du-jour may be :-)

[Uno-Mom]

[QUOTE=Pepper;2922441]
DS1 is 4-1/2, adopted from Korea @ 5-1/2 months. His cleft lip & palate were fixed here and he had speech & language delays...as he's gotten older and into preschool, it's become apparent that he has other challenges as well. We are on a wait list to get a full developmental eval but he's hyperactive, impulsive, sensory seeking, a little anxious, and has no clue whatsoever socially (though I personally don't think it's Asperger's since he expresses HIS emotions and needs pretty well).

QUOTE]

You describe my godson perfectly (except that he's 12 now and was adopted from India at six). He has a complicated rare syndrome but it's getting more and more obvious that there are some secondary diagnoses happening.

I'm so glad this forum got started. My girl seems fairly typical but I'm very interested because of my godson. And also, my profession is with folks who have developmental disabilities. I just started working with more kiddos, up til recently I've only worked with adults. I'm finding it very different, working with the children. There was a real need for this forum!

[lalasmama]

So pleased to see this board now!

I'm Mimi, permanent foster mom to 6-year-old Lala (as well as "extra person" to SO's kids "Easy" and "Challenge"). La's been with me for more than 3 years now. She's got ADHD, some anxiety, and some minor learning disorders, assumed to be caused by in-untero drug exposure. However, she's doing 100-times better than most meth-babies, so I try to remember that some ADHD, anxiety, and minor LD is a blessing compared to what a lot of parents get when there's meth exposure!

[Gena]

Thank you, Jessica and the mods for this board.

I've posted about DS's issues a lot, but I think it's good to have a thread where we can all share our kids' diagnoses.

DS is 6 and in the first grade. he is partially mainstreaming this year and doing very well.

DS was officially diagnosed with autism a week after his 3rd birthday. He has hyperlexia (a different way of processing language) and dyspraxia (a motor planning disorder) as features of his autism. He has made amazing progress, but still struggles with verbal language, social interactions, transitions, and sensory issues.

Additionally, DS also has oculocutaneous albinism. We are not sure which type, but suspect Type 2. (He does have some pigment, so we know it's not Type 1. ) DS was under investigation for this dx for years before it was finally confirmed (and reconfirmed by second opinion). As a result of the albinism, DS has complex vision problems. However, his vision is considered very good for someone with this disorder. He has extreme farsightness, extreme astigmatism, foveal hypoplasia, transillumination defects, and misrouting of the optic nerve. Due to these, his best corrected vision is 20/40-20/50 (again, this is very good, since many people with albinism are legally blind) and he has reduced depth perception. He is also very photophobic and needs to have his eyes protected from the sun.

Over the summer, we discovered that DS has a chromosome 19 microdeletion. This is so rare that no one knows what the clinical significance of it is.

[sariana]

I'm finally back.

My DS was born at 32 weeks, 2 1/2 weeks after I went into preterm labor with no warning signs whatsoever. He is now 6 and in first grade. His challenges include the following:

-gross motor delays, including issues with his feet. He was a toe-walker and had serial casting when he was 2 1/2. He continues to struggle with muscle imbalance between his legs, and he still walks by "bouncing" on the balls of his feet. Until just a few months ago, he galloped instead of running. He recently was diagnosed with tibial torsion, which in his case causes his feet (esp. the left) to turn out to the sides from the hip. Running is difficult and awkward for him, though he has improved phenomenally in just the last few months.

-"self-care" delays: This has mostly been corrected now. But he was delayed in all those things involving dressing himself, brushing his teeth, and all the other little areas where toddlers are supposed to assert their independence.

-social delays: He qualified for OT through our regional center at age 2. By the time he was 3 1/2, he was struggling in preschool, and he got into our disrict's autism program. A couple of years into that, he was diagnosed with Asperger's and ADHD. He remained in special education classes through kindergarten. This year he is in a typical first-grade classroom. Unfortunately, he arrived in first grade as our state (CA) was eliminating its class-size reduction program. There are 32 students in his class, which is overwhelming for him. All in all, though, he is doing quite well.

-continued difficulty with social skills/appropriate behavior: He still struggles with personal space issues, keeping his hands to himself, understanding what is considered "normal" behavior, setting limits, etc. We worry about his ability to make and keep friends because he is a typical Aspie in that he doesn't catch on when people are annoyed by his behaviors. He tries to imitate his peers but misses something crucial (e.g. calls out "See you in school tomorrow!" upon arriving at soccer practice rather than at the end, when it would be appropriate). He is very set in his ways; he doesn't like to play with others because he wants to be in charge and give all the orders. They "don't do it right," so he isolates himself rather than adapt to their games and activities.

I always wonder how many of his issues are the result of his prematurity and how many are just a part of his personality. He is an amazing compilation of my husband and me: I can trace his personality traits and say, "He gets that from me. He gets that from DH. He gets that from both of us." But we have a nearly-3-year-old DD, and she is a completely different person. For example, I see now HOW MUCH DS was delayed in self-care issues. DD wants to do EVERYTHING herself, and she is such a contrast to DS, even now with the age difference. She was only a month early. Is that relevant? Or just a coincidence? I always wonder...

I'm so happy to see this new board because it is so true that parents of children with special needs have unique concerns and perspective.

Sorry this post is so rambling. I think this will be a good forum as people post specific questions and concerns. Trying to reduce my DS to a single post was more challenging than I expected!

[elliput]

I'm a few days late to this thread. I was quite excited that we had interest in creating a special needs forum here, and then promptly forgot to check in on it once we created it.

As you know, I am Erica. My DD was officially diagnosed with mild to moderate autism shortly after she turned 4. Speech and fine motor are DD's biggest delays, but in the past 1.5y of therapy (speech and occupational) and school, she has made some huge strides. Currently, DD is a mainstreamed special ed kindergartener. She spends some time in the interrelated class, but mostly is able to interact and participate with her class with the aid of a para. Social skills are still a challenge, but have greatly improved also. My biggest fear of DD being in a regular classroom were that the other kids would shun and make fun of her for her delays. My fears were laid to rest when her teacher informed me at the parent/teacher conference that all of the kids in the class just adore her. That made my day.

[TwoBees]

DD was born at 28 weeks after a almost nearly normal pregnancy (I really enjoyed being pregnant) that ended in preeclampsia. She weighed 2 lbs 1.8 oz at birth, and spent 8 weeks in the hospital. She is nearly 13 months old now (about 14 lbs) with vibrant red hair and a a firey personality to match. She has mild gross motor delays (although catching up fast!) and eating/oral sensory issues. Otherwise she is a very happy, energetic, and outgoing baby, er...toddler.

I'm also really glad to have this forum.

[zag95]

Hello-
DD was born with a bilateral cleft lip and palate in Jan of 08. She had NAM (which is like a baby retainer) prior to her lip repair, and has had her palate closed. We are looking at an additional surgery possibly this summer to close a fistula on the roof of her mouth, as well as lengthen her palate.

DD has done great- been doing EI for almost 1 yr- and have been doing private speech therapy since June- we have made great progress, but still have much to be done!

Currently, I am working on beginning the fight with our insurance to cover additional sessions for speech, past the 30 per year, as it is medically necessary for my daughter. I know based on a prior post about speech services (I think it was in the bitching post?), I may have a bit of a fight!

I am happy to see this thread available for support and advocacy for parents and kiddos!