introduction

iVillage Member
Registered: 03-31-2003
introduction
8
Wed, 09-28-2005 - 12:07pm

Hi everyone,

My name is Jennifer and I have two children, Sylvia (12/26/01) and Sebastian (10/2/03). My daughter has been diagnosed with a speech delay as well as some OT issues, and she's going to be evaluated by a physical therapist as well. She spoke very early, but around the age of 2 we noticed that some things were wrong: she could label pretty much anything she saw, but she couldn't really put her own sentences together. If we teach her a sentence (such as "I'd like a snack,") she can spit that sentence back at appropriate times, but it's impossible for her to spontaneously say, "I'm hungry. Can I have a cookie now?" We also noticed that she had a difficult time with imaginative play, was incredibly reliant on a strict routine, and had very little interest in other children.

The other strange thing is that she's already teaching herself how to read; she can recognize many words and her favorite activity is to look up words in books and spell them with letter magnets. DH and I have done lots of research and we think she has hyperlexia, which is generally considered to be a subset of PDD. After reading many of the posts on this board, she certainly seems to be very similar to the PDD children. She has an appointment with a developmental pediatrician in November, and at that time hopefully she'll get an actual diagnosis, but for the time being she's receiving special ed services in preschool (speech and OT, and possibly PT too, pending an evaluation).

I'm still really new at all this, and even though we're anticipating a PDD diagnosis, the closer we get to her November appointment (we made the appointment way back in June) the more anxious I'm getting -- I think it will be a difficult thing to hear, you know?

I'm curious: do many of your children exhibit physical delays as well as social ones? I'm curious if the OT and PT problems she's having are related to PDD. We've always been aware of her speech and social issues, but I have to say that it's come as a surprise to us to find out that she has some physical delays as well. I feel like every time I get a handle on things, we find out that something else is wrong with her...

Anyway, I'm sure I'll have *so* many questions for you all, but for right now I'm just relieved to have found a support group.

Thanks for listening,

Jennifer

iVillage Member
Registered: 03-26-2003
In reply to: jenny406
Wed, 09-28-2005 - 5:27pm

Hi jennifer,

Your girl sounds alot like mine did at that age.

First, yes she did have phsyical delays as well. She had PT from 3-6 years old. We also put her in theraputic horsebackriding which has been great. She still rides. She did tae kwon do for a year too. One of Cait's first diagnosis was dyspraxia as well as hypotonia. It is all part of Cait's neurology. In fact, kids with AS often have "motor clumsiness" Some just have it more than others.

Next, Cait also read early and yes she is hyperlexic. It isn't so much that kids with hyperlexia are like kids with PDD, more that there are kids with high functioning autism spectrum disorders who also are hyperlexic. I have heard that hyperlexia can be separate as well, but the ones I have know have all been on the spectrum.

BUT, Hyperlexia is a good thing. It can work out to be a real strength for these kids and something you can use to help her learn. Plus it is a motivator. Also, when kids are hyperlexic going into school age they already have that one thing going for them. They can focus on learning the social cues of class, etc and not have to worry about learning to read. You can use it too for visual helps like checklists, etc. It is a good sign really I think if a child with PDD is also hyperlexic. That is just my personal oppinion but it never hurt my dd.

Good luck,

Renee

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iVillage Member
Registered: 03-31-2003
In reply to: jenny406
Thu, 09-29-2005 - 11:56am

I agree about the hyperlexia -- once we started finding out about that, it became so much easier to come up with coping mechanisms for Sylvia. We make lists for EVERYTHING -- it really helps her get through the day. And one of the reasons she felt so comfortable in preschool right from the get-go is that they have giant lists on the classroom wall, using both words and pictures, for pretty much everything they do during the course of the morning. This really helps Sylvia feel safe in the classroom.

Thanks so much for your reply -- I don't know a single person whose child is on the spectrum, so it is very isolating. Being able to talk to others who are going through it as well makes it that much easier.

Jennifer :)

iVillage Member
Registered: 03-26-2003
In reply to: jenny406
Thu, 09-29-2005 - 1:13pm

You may want to see if your local ASA (autism society of america) has a parents support group at all. Most do. You can also try the school district - some have parents groups. Or your local early intervention or state department of developmental disabilities.

Often these places will have lists of resources available to parents. Particularly new parents. It is really a god send for new parents trying to figure out what the heck to do, lol. Other thoughts are Easter Seals and special olympics.

I have found myself a number of friends with children similar to mine. I was lucky in that fact because some I knew before kids and others just happened into my life. I am also involved in local stuff as well. But I know even at the kids preschool there used to be groups of moms that would get together for coffee on a regular basis. Most mom's get together and discuss dance classes, weaning, learning to read, sports and outside activities. We special needs moms need somewhere to get together and talk about therapies, sensory sensitivities, what to feed our kids, special diets. Things that make NT moms look at us really funny cause they don't know what we are talking about or what to say.

Probably the best place to start is the ASA. If you go to the national website they have lists of local chapters. I will post the link later so my post doesn't get eaten, lol

Renee

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iVillage Member
Registered: 02-24-2004
In reply to: jenny406
Fri, 09-30-2005 - 1:38pm

Jennifer,

Welcome to the board! My son, Nathan is 6 and dx'd HFA. We didn't really have any physical challenges with him. His gross motor skills are normal and his fine motor skills are ok too. The only problem we have is his writing skills. He hates to write. I know alot of the kids though have some kind of fine/gross motor skill delays though.

I hope your appt in Nov goes well. I know what you mean about finding something "new" about your child, everytime you turn around!! Nathan keeps me on my toes, for sure! There's always something new or interesting that I learn about him.

I've only met a few people around where I live, who are going thru the same challenges as I am. It's hard to click with people. I've met them all thru school. If I see a another mom who has a child that receives speech or some kind of services....I strike up a conversation. I just recently met a mom who had her child in the same summer program, and is now attending the same school as Nathan. I started talking to her, and found out that her son is HFA too.

I do rely on this board too! I've made good friends here! It's a wonderful place to come to when you need advice or just having a hard day!! Everyone here understands and can relate! Anyway, glad to have you here, and hope to hear more about your family!

Michelle

iVillage Member
Registered: 06-25-2003
In reply to: jenny406
Sun, 10-02-2005 - 9:43pm

Jennifer

I( feel we got off to to a bad start on this board, and I was going to post a reply on the other thread, but my DS was sick last week and too much time went by. I actually posted a reply to *this* thread, but I just looked now, and it is not there. Flaming iVillage can be very unpredictable. I was *not* getting at you in that post. I was critizing your pediatrician.

Peter was like two different children joined at the waist. From the waist down, he was SuperAthlete: Soccer star, runner extrodinaire, expert kicker at karate.

From the waist up: Wet noodle. Limp, unco-ordinated, no hand-eye co-ordination; low muscle tone, weak punches, odd gait, hyperflexion in most joints, including his fingers. He has been receiving OT since 3yo and now gets PT too. He is 7.

I guess I am saying it is common for Specrum kids to have some physical issues, with muscle tone, gait, motor planning, co-ordination etc. OT and PT can help with this.
Peter can now run those monkey bars like Donkey Kong!

HTH (and that we can be friends)

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-31-2003
In reply to: jenny406
Mon, 10-03-2005 - 10:00am

Hi Paula, while I appreciate your post, I think you have me confused with another Jenny who posted on this board! (I looked back over previous posts, so I saw the thread you were referring to.) So don't worry -- we can certainly be friends! ;-)

Thanks for your reply about the OT/PT issues -- I suspected that the "Pervasive" in PDD meant that the delays can be all across the board, but it's still frustrating for me to learn that Sylvia is struggling in SO many different areas, you know? And really, it makes me even more amazed at how much she's learning and accomplishing, in the face of so many obstacles. I don't know yet when her PT evaluation will be -- I received a consent form to sign last week, but haven't heard anything since then -- but I'll check with the school if I don't hear anything within a couple of days. Her OT work seems to be having an effect already; in the month since she started school, she's gotten *so* much better at using a fork, drinking from an open cup, etc. But I do have to admit that she does have a bit of the "noodle" thing going on in her upper body, and the clumsiness as well.

I'm so glad to have found you all here; you've all been such a help already.

Jennifer :)

iVillage Member
Registered: 06-25-2003
In reply to: jenny406
Mon, 10-03-2005 - 10:54am

Jennifer.

Oh good. I'm glad we go *that* sorted out. -or something. ;)

Word from the wise: make sure you insist on a FULL PT evcaluation. Don't let them blow you off with a PT screening for Adaptive PhysEd. Put in writing what all your concerns are -low tone, crossing the midline -whatever.

Peter's first school PT eval was pure BS (pardonnez mon Francais). They just screened him for adaptive physEd. They checked to see if he could throw/catch a ball and if he could run in a straight line (regardless of his *form* doing it!). Well the kid can run out of town and of course, he passed. They didn't look at tone, gait, co-ordination or his need to fling himself all over the place.

Finally, in 1st grade in a different school, myself and the OT there (who is brilliant!) pressed the SD and the new PT to give Peter a full eval. Lo and behold! He qualified because of his muscle tone, gait and hyperflexion (and sensory issues -but ssssh. Don't tell the District!). He gets PT twice per week now, as well as OT and he *loves* it.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-31-2003
In reply to: jenny406
Mon, 10-03-2005 - 11:22am

Thanks so much for the advice; you are not the first person to remind me of the importance of staying on top of DD's therapies, evaluations, etc etc. etc. When I started this whole process, I had a very naive trust in the school system... Well, suffice it to say, lesson learned: I now know that it's really important that I make a pain in the neck of myself. It's difficult for me, because I'm a person who doesn't really like to make waves, but I'm getting much better at being a nuisance -- and it's a good thing too, because I know for a fact that certain things wouldn't have gotten done with respect to Sylvia's evaluations etc. if I hadn't been the squeaky wheel.

I hadn't realized that DD could be receiving a simple PT "screening" rather than a complete evaluation; I'll be sure to follow up on that.

Thanks again!