New here...19mos with PDD

iVillage Member
Registered: 07-10-2003
New here...19mos with PDD
4
Fri, 04-29-2005 - 8:40pm
I am new here. Unfortunately, I wish I wasn't as I am sure most of you do. Micah was diagnosed Tuesday with PDD. He is 19 months old. We are also expecting child #2 (a girl) in July. I just thought I would let y'all know you have a new member. It's so hard to read some of the posts from those of you with older children. So far, we don't know how severe it is b/c of his young age. The doctor said that it usually won't get worse, and Early intervention is the key. I just thought I would introduce myself. :) Sending P&PT to everyone that is here. We are just begininning the journey, so I can't imagine what some of you must be going through.

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Micah David
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iVillage Member
Registered: 06-26-2003
Fri, 06-03-2005 - 1:25pm

Hi Aundrea,

I haven't been on this board in a month of Sundays, it seems, but here I am and I read your post and didn't it sound like me back in the early days. My DS is now 7 and amazing. He was non-verbal 'til 2, but now is a little chatterbox. He was in SpEd preschool for two years, had at home Early Intervention prior to that plus saw a Sensory Integrative Therapy-oriented occupational therapist at the same time. He's now in a regular classroom with a little 'pull-out' time w/ a special educator, and even has a real friend. Life has had some tough spots and some lower lows than with an NT kid, such as me tearing up in the aisles of WalMart, knowing my 4 year old would ask why the Easter Bunny didn't bring her little brother more ("why doesn't the Easter Bunny like NayNee?") like the year before when she'd gotten loads of goodies and a stuffed toy while he'd gotten (1) small ball (he has/had oral tactile issues ...we were probably the only parents cheering and tearing up when our child ate a candy bar!!). But then, as I was smiling a very big smile to myself last night as I lay awake in bed, life has some higher than high spots, too...such as the incredible joyful, proud, elated feeling when I recall just last Friday, when my little formerly crowd-phobic, "don't look at me!!" boy went to a magic show at the library and was selected to be a magician's assistant in front of the whole crowd of about 75....and looked proud and happy and did just great....you wouldn't have believed it would be remotely possible 'back when'. Starting out it is so scary, but you keep trucking, Aundrea, and you will get much farther than you can imagine. My goal was always to have him indistinguishable from his peers by the time he started Kindergarten; and toward that end, my strategy was always to tackle first those things that made him stand out from his peers....such as being terrified of swinging (guess who now self-selects to go out and swing and swing and swing in our back yard? Hint: the same boy who, back in SI therapy, struggled against even gently swaying on a platform swing in his mommy's arms!). I read to my kids all the time, and frankly, I to this day feel that "Goodnight Moon" helped him "get words". I'd always read three of the same short books each night and then add one different one. The rhythmic rhyming of "Goodnight Moon" was conducive to leaving off the last word of a line periodically and by George, with repetition and encouragement and time, he'd pop out the missing word. I know more about what's in that Great Green Room than any parent alive, I think! He still has his moments, for certain, but we are doing great and when I look at where we started...

Is your husband still military (I just saw the wedding photo). If so, TRICARE has a program called the Program for Persons With Disabilities which can help pay for separate therapies. We found using the term "autism spectrum disorder" got a hell of lot more done in terms of opening doors and wallets than "PDD NOS"; if you haven't had a team consult or a diagnosis from a developmental pediatrician or other "expert" above and beyond your regular pediatrician, start the process of making that happen; having that "expert" diagnosis in writing will do a great deal for you as well. You'd think everyone would want to help out kids with issues, but not when there's money involved...which includes with some school systems as well as some insurance companies. We were lucky; my DH was at Walter Reed and regularly met with the Developmental Peds guy as part of his job, so we were in the right place at the right time, for sure. I've run into others at smaller posts who have not been so fortunate....it's more work and persistence required in those situations but again, well worth it in the long run.

So, you hang in there. You'll be very busy in the next couple of years what with the baby and the toddler needing all the early intervention you can throw at him, but this too shall pass and with any luck you'll wind up in a better place than probably you feel like you can right now. Let me know if you want to hear more, particularly in regard to the military health angle on it (if you all are still a mil family).

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Tue, 05-03-2005 - 1:51pm

Hi Aundrea and welcome.

I have a 3.10 month old (Jack Attack) who was just dx PDD-NOS officially last month, but we were on the road for about a year. (When he was your DS's age he was still typically developing, as far as we can discern.)

Congratulations on your future baby girl! I also have a 15-month old DD (and a 7 year old DD). Lemme' tell you that, as difficult as all of this is, a wonderful new baby girl will be such a joy to you. I am happy for you.

And early intervention is the key. His young brain is forming and changing every day, so you can take great advantage of that.

I look forward to hearing more about you and your little guy!

Cathy

iVillage Member
Registered: 02-24-2004
Sat, 04-30-2005 - 1:46pm

Aundrea,

Welcome to the board! I have 2 boys, Tyler and Nathan. Nathan is 6yrs old and dx'd HFA. We've only been doing this for about a year now. We didn't know prior to his dx that he was even on the spectrum. That's great that you've gotten your son dx at such an early age. It will definitely help. Nathan is very high functioning and very unpredictable, so it was hard to know for sure when he was younger. We knew something was different about him, because he wasn't like his older brother, but we didn't know what was going on.

It is nice finally knowing how to address Nathan's issues and why he does some of the things he does! I've learned alot being on this board, and it's great knowing that there are people out there going thru some of the same struggles that we face everyday. Glad to have you and Micah here! And congratualations on your pregnancy!

Michelle

iVillage Member
Registered: 03-26-2003
Sat, 04-30-2005 - 5:39am

hi aundrea,

welcome. i have two sons. matthew will be 3 in july and was diagnosed with autism at 22months. austin will be 2 in june and has pdd-nos diagnosed at 21 months.

i know it's a lot to take in in the beginning. how exciting that you have a little girl on the way, but i know that it must be adding to the anxiety a bit too.

you are so fortunate, as are we, to have your son diagnosed as early as he has been. early intervention is really important. try to take things one day at a time, and it does seem to get easier as time goes on.

valerie

~Valerie