Wednesday, June 5, 2013

I guess we can say, "It's Official"

So JJ had his appointment this morning, at the Children's Specialized Hospital.  They have a developmental clinic, where a Nurse Practitioner, who is specialized in Developmental Disorders sat with my son for a few hours.

JJ was in a great mood this morning and on the ride up to the hospital.  Once we got there, I had to register.   This was a problem.   Although it probably only took about 5 minutes or so, it was a problem because we were right next to the automatic sliding doors.   This meant that my precious little JJ could in fact run out of the doors at any given time, off into the parking lot, where he could get hit by a car.   It puzzled me that a CHILDRENS hospital would have such little obstacles between the main waiting area and the street.   I guess that's not really here nor there, but I thought I'd vent about that for a second.  Anyway, JJ is pretty good in public settings, but it's very hard to keep him confined to one spot.  Had the doors not been an automatic doorway to disaster, I would have let him run freely while I signed papers with the lady in registry.  So I had to hear his loud whines and deal with the first tantrum of the day, while I tried to confine this 35 pound being to my lap.

After we were through with that, we were redirected to another part of the hospital where we were to sign in, sit, and wait to be called.   This part was easy.  However, one we sat down JJ decided he wanted to run up and down the hallways.  After chasing him back and forth for 10 minutes, he decided to stay in the waiting room and sat down and watched Bubble Guppies on Nickelodeon.  JJ is pretty good at following directions and he understands everything.  He just doesn't talk.  So as long as he is not tired, or feeling confined, he behaves better than most "average" kids his age in public.  I have definitely seen some bad ass kids.  He isn't one of them.   I think to a stranger, they would never even know JJ was having developmental issues.  I was looking around at all the other children who were there.   Some were very clearly on the severe side of the spectrum, and some, like my JJ you would never even know.  Its just a reminder about how complex ASD can be. 

We were finally called into a room where the nurse spoke to me for a little about my concerns and about JJ's behavior and medical history.  Meanwhile, there were plenty of toys to keep him entertained.  I have to say he behaved really well, and did what I told him to do.  He is always like this at home, but sometimes around other people, he likes to make a liar out of me.

After the session was over, the nurse did indeed say she believes some of his tendencies are that of a child with autism, and that since he is so young it is hard to know exactly where he is on the spectrum.   To my relief, she did say that he is definitely not severe.  His only problems were obviously his speech, and the fact that he doesn't do simple gestures (pointing, waving hi/bye, shaking head yes/no).   Everything else seemed on point with normal development.  I felt so relieved to hear that.  It doesn't mean he wont regress further in the future, or that he can be "cured", but it means to me, that he will most likely function at some type of independent level as he gets older.  I don't know, it just felt nice to hear.   She did suggest we up his hours of early intervention from 4 hours a week to 10.  That's a huge leap, but I think its great.  He has made some real improvement since receiving it in March, and I can imagine that increasing another 6 hours would be a TREMENDOUS help.  She also set us up to meet with a speech therapist, which I had thought would've been done months ago.   I am extremely happy about that. 

When I got home and told my boyfriend about the Evaluation and what the outcome was, he seemed to accept the news and handle it well.   I thought he would be in his usual state of denial and that we would argue over the diagnosis, but we didn't.  This makes me happy too.   Its hard enough dealing with what's going on.   It would be even harder not being on the same page.

Well, that was my day.  I guess I had a small speck of hope that she would say everything is fine, but deep down I knew, so I was prepared.   I feel good though.  I know my son like no one else, and I feel like he will be ok.  He really is very intelligent, like a lot of children with autism seem to be, and I just have this feeling, this mothers intuition that he will still go far in life, hopefully much farther than I have.   Medical Science and Research have come so far and will continue to come up with new information and maybe one a drug that can slow down or reverse some of the symptoms of Autism.  My son is only 2.  Who knows what will exist when he's 10 or 15?  I have to stay positive.

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