Re: New member saying Hello

[Guest guest]

Aloha and Hau'oli Makahiki Hou! (aka HAPPY NEW YEAR!)I am honored to be the first to respond to you considering the time difference! Welcome to the group! I find it amazing how similar each of our first posts are...I found out that my daughter Aubrey (13, pddnos, Down syndrome, mildly hearing impaired) truly had more going on than just sensory behaviors associated with Ds when she was 9 years old (late onset) so you are very blessed to have earlier intervention. Your

pediatrician is really on top of this and that is another blessing! She sounds like the kind of dev disorders ped a lot of us wish we had if she is already advocating for 20 plus hours of ABA for your child! Sounds GREAT to me!!!As a single Mom to two daughters (my oldest is 16) I have an idea of your challenges as it sounds like you have your hands full with TRIPLETS in itself! Just from your short post it is obvious that you are an amazing Mom and they are Blessed to have you!In retrospect, I did the best I could with the energy and resources I had (especially as I was going through my divorce in those years) and I am going to start patting myself on the back more about that in 2012 BUT-if I were to have the opportunity to go back to age 3, I would have advocated for MORE OT, MORE PT, but especially more ST and Aubrey being empowered more effectively to COMMUNICATE with the world in those critical developmental years. I'm sure a lot of parents here would agree that it is critical to also strongly advocate for developing goals to ensure strong social skills, ie appropriate behaviors as well.Your child is EXTREMELY BLESSED to have siblings exactly the same age that can MODEL appropriate developmental milestones thus that is the HUGE POSITIVE you can build on even in the hardest of days...Our children find their way though, and they can lead us along, too-if we just find, and enable their passions!See a later post today and you will see exactly what I mean!Welcome!Desi McKenzieMom to Aubrey, 13, 16Mililani, 'Oahu, Hawai'i To: Sent: Sunday, January 1, 2012 2:23 AM Subject: New member saying Hello

Hello,

I am new to the group and my 3 1/2yr old daughter was recently given the added diagnosis of ASD. Part of me is still not sure and part of me knows this is the answer to the question that has been in my head for awhile now, "is there something else going on?"

Of course we are now on the path to determine the best options for her...the Dev Ped wants us to do 20+hrs of intense ABA. I'm not sure I know enough about it at this point to decide if that is best for her.

She currently attends a Spec Ed preschool 4 days a week for 2 1/2hrs and receives services there. She also attends a community preschool 2 afternoons a week for 3hrs. It is a small class of just 5 kids (3 of them are mine- my daughter is one of triplet girls). She gets private ST every other week and goes to a OT for a "mealtime" clinic weekly.

The major "red flags" the Ped saw were lack of reciprocal communication and poor eye contact. There are some other signs but those were the biggest. She is above her actual age in letter recognition and knows alot of words but just isnt using them to communicate.

My question now is, what do you know now that you wish you knew when you received the diagnosis? What path did you take and would you make a different decision now? Also, if anyone has experience with ABA and can share some insight that would be great.

I was so glad to find this group. I have always felt like we never "fit". I am the only one in my multiples group to have a child with DS- in the DS world it's hard for people to understand the challenges of raising multiples, espicially one with a disability and now we have the ASD to add to the mix. It's overwhelming most of the time but we love them all more than anything.

I look forward to hearing your thoughts and suggestions!

[Guest guest]

Welcome. I can so relate to the feeling in local support groups that they just

don't grasp the complexity of the situation. I have 2 boys Aden 8 DS ASD ADHD

(with some medical problems too) and Aren 5 ADHD. We got Aden's ASD diagnosis

only about 16 months ago ( he had red flags at just a couple months and lost

speech at 3 years) after I figured out what was going on and told our ped. It

sounds like your ped is way ahead, which is awesome. And to be suggesting 20

hours of ABA is fantastic. It sounds like a huge amount but if it's like the ABA

therapy my brother got for his boys (3 with varying degrees of ASD) it isn't.

Their therapist basically taught behavior shaping and how to figure out where

negative behaviors came from and what purpose they served. The therapist worked

with everyone the boys came in contact with (school, family, after school

program) so that we were all on the same page. It actually made a huge

difference for them.

What I wish some one had told me when we got our diagnosis is just how common

the co-occurrence of DS and ASD really are. I felt very alone. Like my kid was

soooo very different. Then I found this group. They have been a wonderful wealth

of information and support. They also showed me that DS and ASD is actually

pretty common. Some estimates now show that some form of ASD occurs in 1 out of

every 4 kids with DS.

Again welcome to our group. Please tell us where you live and a little more

about yourself and family.

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