How do you cope?

Since my DD has been Dx 2 weeks ago with PDD NOS, it has been very rough for me. I am going to be my child's biggest advocate but at the same time, its so hard to take this all in.

What do you do to think positively? she will be starting ABA next week. I am just so heartbroken. People have enough problems growing up and I feel like our children are already at a disadvantage. I should be grateful that she isn't terribly sick. I just wanted to hear from you guys what advice you can give to a sadden mom.

Re: How do you cope?

It is very hard. I have 2 children, both with special needs.
My 5.5 year old DS has PDD-NOS and my DD has Down Syndrome.

The only thing I can do is be their biggest supporter, cheerleader, and advocate.
So thankful they are both very healthy.

I will say, my DS was diagnosed at about 2.5 years old and once ABA started, he completley took off! I believe that program is nothing short of amazing! He's now in Kindergarten (special ed), but, is doing great!

I have my breakdowns. Not going to lie, but, I definitley have a lot more positive days then negative.

How do you cope?

It's hard. But I will say it gets easier over time. I was just actually just thinking about this this morning in the car. I was miserable the first 4 years. It was just awful. The scheduling of the therapies, dealing with the schools, DD's frustrations (she was a screamer), not sleeping, not being able to do things all the other kids were doing, was very very hard and upsetting. All the hard work does pay off! The past year (as her language is growing) it has been wonderful. We are all happy and having fun. She is funny, tells jokes, we go to Disney, plays wonderfully, just started Daisy's and is in dance. DD will always be a little different and will always need certain accommodations but in time we learned to embrace them and enjoy what we have. Every little thing my DD does I appreciate and she surprises me daily.

This morning she lost her first tooth and she thinks it is the best thing in the world. She said today is now an official Tooth Holiday and we have to celebrate lol. So I just decorated the house and got her a cake for her new holiday and we'll celebrate after school!

How do you cope?

i may be the odd one out here, but i never really took it hard, i guess its because i knew when he was 6 months old. the only thing i kicked myself in the ass for was listening to the dr and friends who said to wait. DS was not diagnosed until he was 15 months old, in my eyes, he could have been even further than where he is now, had i listened to my gut.

with that said. there are rough days, tough days, days i want to scream, but he is still the same little boy i brought home from the hospital, and he just needs to learn differently.

AJ is now 5. he has come such a long way. he plays on the playground with NT children, has conversations as best as he could with them. ive met maybe a handful of parents/children who will walk away from him, but those are the same parents who only want to socialize with their own clique.

try to be positive, more people and children are more understanding that you may think. lots of hugs to you, but ABA did wonders for AJ, take what is offered, even if it seems too much.

remember you child is still the same person.

Re: How do you cope?

I understand how you feel! My son's diagnosis is still relatively new. Those first few weeks were so rough, trying to come to terms with his diagnosis.

I guess it just gets progressively better with time. He is still the same kid he always was, but now he has a diagnosis. Which means he can get treatment (and we are fortunate enough to live in a very generous state, at a generous time -- not everyone is so lucky and with budget cuts the availability of these services might not last forever).

It also means there is a reason for things he does that are not "like" what other kids do. Believe it or not, having a reason does make a difference in the way people treat him, and regard me. Before his diagnosis I had no idea why he would do certain things (like certain stimming behaviors), and well-intended people gave all sorts of "advice" for things that worked for their kids. I kept trying to tell them it won't work for my son (e.g. getting him to drink from a cup instead of a bottle -- people would say "Just tell him that bottles are for babies!" Or "Just tell him that x..y...z..." No one understood when I told them that I can't "just tell" him these things because he doesn't understand, or that he freaks out every time a cup comes near his face. Now I tell them he has classic autism and a lot of that "advice" stops, because people know they are dealing with a special situation that they don't fully understand). People judgmental were actually suggesting that some of his behaviors were a result of "bad parenting" on our part. Now that they know he has autism they have to take all of that back. So in a way, it does provide some comfort, to know that his developmental delays are not the result of anything I did, nothing that I could have somehow prevented.

I think the best part, for me, so far has been getting in touch with other autism parents, like the ones on this board. It has been so great to communicate with people who understand what I am going through. And there are a lot of them -- with some form of autism affecting more than 1% of children and about 2% of all boys. People (including policymakers) are going to have to start paying attention and giving more respect, or else we as a society will be in big trouble.

FM me any time!