Hi, I'm new to the board....(lots more)

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Hi, I'm new to the board....(lots more)
4
Wed, 04-07-2004 - 8:26pm


Hello everyone,

I was posting over on Dev. Delays and I saw that you all were here!

Two weeks ago the EI people mentioned the word "PDD" to me. I have a 33 month old DS (and a 5-1/2 year old DD and an 11-week old DD). When I took the baby to the ped. for a well-baby visit I started talking to her about Jack. How he seems "out there" and she immediately (bless her) started asking me all the right questions and referred me to Birth to Three. He is now getting 3 hours a week w/ a special educator, 2 hours a week of speech and 3 hours of OT (his motor skills are fine but there seem to be sensory issues).

Anyway, I don't have a Dx. yet. We have an appt. w/ a big deal developmental ped. in NYC in June... The EI people aren't sure if it's PDD -- he is apparently very high functioning in some areas. But from what I've read, I can't help but think that it is.

DS hit all his developmental milestones, but we think he regressed socially after age 2. He speaks in sentences, albeit "stock" ones -- "I want to eat ___", "I want to read ___", "Can I have it, please?" etc. The speech pathologist actually thinks his vocab. is "wide" but he isn't using it. His sentences get his needs met, so fortunately there is little tantruming. He makes eye contact w/ adults. His use of toys is semi-OK. He CAN do pretend play if someone else initiates it. He is generally a happy little boy. He loves both of his sisters, plays "cootchie coo" with the baby etc. He seems almost interested in other kids, but just not able to "get there", e.g. there were lots of kids playing in our cul de sac and he went out in the middle and ran around among them and then ran off.

We had our transition meeting with the school district. They will evaluate him themselves in the next couple of weeks, but I let it be known that I want a spot for him in their summer "camp" as well as the school's special nursery school next year (supposed to be a great program -- they have one-on-one care). Sadly, I had planned on trying to get him in there as a "typical" and now I need a spot on "the other side." I can't see how they could not take him.

The one good thing that has come of this is that I have had great support from a friend w/ an Asperger's DD, as well as two new friends w/ autistic DSs and also coincidentally typical DSs who are my son's age. They are really kind and bring them to play -- the only playdates that I don't feel uncomfortable on. I've really been loading up on playdates (as difficult as it is for me) and my friends are very kind and compassionate about it. I know they feel "by the grace of God go I."

I have been doing a lot of reading and research (where would we be without Amazon.com?) It seems to depress me more, but I feel I need to do it.

I have been so-so emotionally. My DH is a great support. Originally I got the (what I understand to be usual for DH's) "Look! He talks! He's just fine!" But now DH is with the program, doing a lot of reading on the topic and keeping me calm and upbeat. It is hard trying to give my all to everyone, including a newborn baby who deserves nothing but joy around her. I feel almost guilty that I'm not enjoying her to the fullest b/c of this going on.

I would love some feedback from moms of older PDD-NOSs to see how this unwinds down the road. We are hopeful b/c of some of his skills and that we are intervening on the early side (before age 3).

You guys seem like a great group. Thanks for listening.

Cathy

iVillage Member
Registered: 06-25-2003
Thu, 04-08-2004 - 5:47pm

Cathy,


Welcome to the board.


I know exactly what you are going through and it is very difficult and bewildering. You must be in the greater NYC area. Where? I am on Long Island.


I am Paula, SAHM to Peter, 5½, who has high Functioning Autism. I also have a DD, Siobhan, (4 next mo) who also has something going on, we are waiting for our own Developmental ped appointment for her in August.


It does get easier as you go on, learn more and gain confidence. There are always ups and down when raising

-Paula

visit my blog at www.onesickmother.com
Avatar for njbeachma
iVillage Member
Registered: 08-22-2003
Sat, 04-10-2004 - 7:09pm
Hi Cathy,

I'm Shelley with a 3 yr old DS as well. Your story sounds so familiar to mine with a couple exceptions (My DS does have the occasionaly meltdown!). Although I saw some red flags early on, DS is my only and had nothing to compare to so I figured he was ok. He had a very wide vocabulary by 2 but I noticed he quoted books alot instead of speaking from inside. He also played different then most kids and did the same thing your DS did when he ran into the group of kids and just ran around. We are currently getting him evaluated so it will be interesting to compare notes. We see develp. ped in June, too. DS also has sensory issues.

My best advice to you is be knowledgeable, but when your not feeling that great, don't read anything to get you down. Just enjoy the happy little boy for who he is...he wants to play with the other kids, he just needs a little extra help in teaching him the rules of play and interaction. You did the right thing by starting early and this will benefit him greatly.

Welcome & Keep in touch!

Shelley

iVillage Member
Registered: 02-24-2004
Sat, 04-10-2004 - 10:31pm
Hi Cathy,

I'm Michelle and I have 2 boys, Tyler (7) and Nathan (5). We're in the process of getting a dx for Nathan. I always new he had quirks and was a bit delayed, but I didn't realize early on that he had autistic tendencies. We started our evals when he started preschool---he just wasn't adjusting as well as the other kids. I wasn't at all surprised at this, but I had no idea that he had so many issues.

Stress, anxiety

Obsessive behaviors

Transitions difficult

Fears

Repetitive speech

Picky eater

Smells things

Lines up his toys

Ignores when spoken too

Spaces off

Finger flicking

Runs around, jumps constantly

Humming, laughing

Little eye contact

I could go on, but I think you get the point!! His big brother has been extremely helpful, though. He has, unknowingly, taught Nathan how to communicate really well, show affection, play games (taking turns, etc.). They play together constantly, and are the best of friends. I think having a sibling has helped Nathan with alot of his issues.

Anyway, welcome to the board, it's a great place to be!! There's lots of support here. Gotta go now, Nathan's having a bad evening!!! I think the excitment of Easter is too much for him!!

Michelle

Avatar for mamabearof2
iVillage Member
Registered: 08-30-2003
Sun, 04-11-2004 - 6:40pm
Hi Cathy and welcome to our little part of the cyber world.

I am late at welcoming you but in my defense I have been nursing a hubby with a bum foot, working a full time job and caring for a house with two children.

I am Linda mother to Jimmy 15 years old-PDD-NOS and slightly MR and Kyle 11 years old-educational difficulties.

Welcome and I am anxious to get to know you and your family!

Linda

Linda5Fburgerbear.jpg image by suzyqe1            &nb