RAISING JOEY

“Da”

Lately I’ve noticed Joey’s speech (what little he does say) has been disappearing more and more. He used to babble and try to have a conversation with people, now that’s not happening. He’s grunting, groaning, grinding his teeth more and more, and holding onto his Matchbox Cars licking them. Now we just get the occasional “da” out of him. He used to say so many more sounds.

I often wonder, maybe he really is on the Autism Spectrum like a specialist thought months back or maybe it’s his hearing?? Could it be something with his sensory processing??

I just wish I knew. I wish I could snap my fingers and have words come out of my little boy’s mouth. I long to hear “Mommy” come out of his mouth like Leah says. I want him to be able to tell me where he’s hurting and not just scream and throw himself down when he’s mad.

I’m not the only one in our family who’s noticed this and I know it’s not because of Aiden’s arrival since this has been going on for almost 2 months now. I just don’t know what to think…

Annual appointment with Dr. Bob

Yesterday I took Joey to his annual appointment with Dr. Bob, his genetist. We absolutely LOVE Dr. Bob!

I filled him in on Joey’s new diagnosis of being on the autism spectrum. He thinks otherwise… he actually thinks that Joey is OCD (obsessive complesive disorder) and his new crazy behaviors are caused from mental trauma from his surgery back in November.

Joey’s behavior has changed since then and I never really put two and two together. Joey’s speech & sign language has regressed along with his new “bad” behaviors. Dr. Bob compared it to almost like a “post tramatic stress” from the surgery.

THIS MAKES PERFECT SENSE!

Joey was so crazy during the appointment: screaming, throwing himself onto the floor, all the new things he’s been doing.

Anyways, I’m making an appointment with a specialist regarding the autism/ OCD to get another opinion.

Back to the appointment, Joey’s weight is a little under for his height on the DS growth charts so hopefully we can get a few extra pounds on him!

He also agreed with Joey’s GI about the endoscopy, colonscopy and biopsy to hopefully figure out Joey’s tummy issuses.

Ok, well I think that’s it for now! I’ll try to post again later this morning!

Welcome Back to Holland…

Yesterday was Joey’s autism evaluation. The guy came to our house along with Joey’s EI teacher and the evaluation took a little over 1 hour. Afterwards he sat for a few minutes going over everything he wrote down, adding together numbers off the paper. I was so nervous as he was doing this but I knew deep down what the results were going to be.

Joey is on the autism spectrum, a lot of the lingo the guy was using, I still don’t know what the heck it all means. Once I get the typed out evaluation in the mail, I’ll read up on it all. It appears Joey is on the spectrum but barely.

He did suggest getting Joey re-evaluated in 3 years to see if the results might change a little. Still, hearing that word, autisic.

So, yesterday I boarded another plane, thinking I was going to Italy but ended up in Holland once again. But Holland is beautiful and I’m grateful that I’ve now been there twice.

This obviously doesn’t change the way I feel about my son, or who my son is. Joey is Joey and nothing can change who is he. It’s just hard knowing that Joey now is considered having a duel diagnosis of Down syndrome AND autism.

*If you’re wondering what I mean when talking about Holland, click here.

TGIF!!!

Phew! That was one long week! While I’m waiting on hold with Joey’s new ENT to make sure everything is in order for Monday’s appointment, I thought I would give y’all an update!

This morning, Patrick and I took Joey to his new school for an in class observation with his new teachers & therapists. I can’t believe in one month my little boy will be starting school! Everything went a lot better than what I was expecting!

Joey is such a creature of habit, and HATES changes, I didn’t think he would. In the past whenever a new therapist would come to our house, he would FLIP out. Well, today, he proved me wrong! He walked into that classroom and charmed all of his new teachers only like Joey would!

I’m so proud of my little man and how good he did!

The school psychologist said she’ll be calling me to set up another observation (or two) before Joey’s PPT in March.

Onto the next Joey news… his therapy team and I had been talking about the possibility of him being on the autisic spectrum. He’s been doing a lot of “stimming” with different objects and at times is obsessive with it.

He will take a piece of cloth and wave it around like a mad man and the minute I try to stop him or take it away, he flips out. He does this with other objects too. Many times, it takes more than saying his name to get him to stop doing this.

And I’ve noticed other signs there’s a possibility that he’s on the spectrum that I brought up to his therapists so they went ahead and did an initial screening. That testing brought up some concerns so now they’re sending out an autism team to meet with us.

We know if he does have autism, he is more “high functioning” (I can’t believe I just used that word), since he is verbal and makes eye contact, but there’s just something else. We’ll see, hopefully when these people come and observe Joey (or whatever they do), we’ll get some answers.

Did I mention that I was just on hold for 11 minutes waiting for the ENT office to pick up?! Anyways, I hope everyone has a GREAT weekend!