new here- need advice for toddler

iVillage Member
Registered: 07-05-2004
new here- need advice for toddler
4
Wed, 07-21-2004 - 3:49pm
Hello to all. I am new to this board. My two year old daughter was recently dignosed by a neurologist with a list of devlopmental disorders...

-Processing disorder... specifically auditory processing and spacial relations

- sensory disorder

-speech dyspraxia

We have had her in pt for the last 14 months and speech and ot for the past three months. It feels liks there is no one to tel me what to do for her. Pediatrician led me to early interention but hasn't told me if she needs special school, what to expect from her long term, etc. Each therapist talks only about their own discipline and i need an overall picture to understand. Neurologust is hard to get in touch with when it is not an emergency... who could think of these questions while at the appointment where all of this news was given to me?!

Does anyone have experiance with this? Any words of hope and encouragement? Any advice?

Thank you.

iVillage Member
Registered: 03-19-2003
Thu, 07-22-2004 - 9:16am

Hi and welcome to the board...thanks for dropping in and we hope you'll make us one of your regular stops!

 


 



iVillage Member
Registered: 10-21-2003
Thu, 07-22-2004 - 12:16pm
<<>>

Been THERE Done THAT!!!!! Honestly, it will get better as time goes on, and things will come together into a vague picture of what to expect. I say "vague" because it truly depends on the child as to what will happen in the future. Now there are a few things that you can do...talk to your Early Interventionist...that's what they are there for. THEY should be at every appot (if possible) and then they should help you to incorporate everything into a workable daily lifestyle. At least that's what they did here, for us. You can also request a meeting be set up with all your therapists, together, so that they can answer any question you have and explain exactly how all the disciplines are supposed to work together for your little girl. I had a couple of those (that my Early Interventionist set up) and it went along way to helping me understand.

Another thing is that your DD is young, and we didn't start "interacting" each discipline until ALicia was 3, going on 4.THis was because each therapist wanted to see how far she would progress BEFORE they needed to think about school and the rest of her life. Considering we were tole that she would be a vegetable...she has come a long way. ALiicia is in a wheelchair (just got a power chair) and doesn't sit unassisted, she doesn't talk (using her voice...she uses picture symbols and computer scanning with a head switch access). She is going into first grade in September and "mentally and emotionally and socially" she is a 'typical' 6 year old. SHe is expected to complete the same curriculum as the other students, except she uses computer print outs rather than handwritten work.

The best thing for you as a parent is to tell the "most accessible" therapist or Doctor or case worker what your concerns are and ask for their help in overcoming those concerns. WHether that is a meeting with everyone or something else tailored for you family...that's what they are there for, to help all of us cope and have as normal a family life as possible. Have a good day and Good Luck. Shelley

iVillage Member
Registered: 03-16-2004
Fri, 07-23-2004 - 10:27pm
Hi there.....

I know your frustrations.

My ds, now 4 1/2, was a year and 1/2 delayed in most areas when he was two.

I encourage you to talk to your OT, concerning sensory integration dysfunction. It involves more than just what we know as the 'senses'. My son has fought a long battle that is far from over. There are things your OT can do and tips that they can give you to help your child with these problems as a unit.

If you can get a hold of a copy of 'THE OUT OF SYNC CHILD' by Carol Stock Kranowitz, M.A.,

I would like to encourage you to read it. It is a lot of information to take in and mostly written from the perspective of the extremes, but may give you insight as to what your child is going through.

Good luck and best wishes

iVillage Member
Registered: 03-26-2003
Sun, 07-25-2004 - 9:59am
Hi,

I agree that read , read and enjoy your kid. You know your kid and trust your informed gut feeling. We parents can be great teachers and help our kids aquire thinking , problem solving and communication skills by simply talking , listening and most important asking questions. There is a great poem written by a mom on enjoying our special needs kids

WELCOME TO HOLLAND

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

~~~~~~~~~~~~~~~~~~~~~~~

What is right for one soul may not be right for another. It may mean having to stand on your own and do something strange in the eyes of others. But do not be daunted. Do whatever it is as you know within you that it is right for you.

I hope this helps

Yours Mary