Friday, January 22, 2010

All Children's - Rothman Center

Isaiah had his appointment with the neuropsychiatrist on Wednesday. I will start out saying that it was a looooooong day. Not only was the appointment at 9 am, the appointment lasted 3 hours! The long day also included lab work and a 3-hour drive home . . . I think we finally made it home by 10 pm.

The appointment went well, for the most part. Nothing was said that we hadn't already been told (rather, suggested) before. After playing with 2 therapists (a speech therapist and an occupational/physical therapist) for about 30 minutes or so, it was decided that Isaiah needs ST and OT at least 4 days a week . . . and PT to strengthen core muscles. They also said that he would benefit from a therapist-controlled social play group . . . no food involved, and only an hour at a time.

After meeting with the therapists, Isaiah was introduced to the physician (a neurologist-psychiatrist). She played and observed Isaiah for the rest of our stay (about 2 1/2 hours). She asked lots of questions (of us and Isaiah), but mostly observed. At the end of the appointment (and after consulting the therapists), it was concluded that Isaiah has very high functioning Autism (an Autism Spectrum Disorder). The doctor said that Asperger's Syndrome would have been considered, except Isaiah has a speech delay (which is not part of Asperger's Syndrome). Along with that, Isaiah was diagnosed with ADHD (combined type) and Sensory Integration Disorder, both of which go along with Autism Spectrum Disorder.


We were given more informational papers, a recommendation to CARD (Center for Autism and Related Disorders), and the doctor's orders (including lab work and a list of recommendations for therapy). It's the lab work that made our day that much longer . . . I'll explain more in a minute. =0)


Since it was a beautiful day outside, we were in beautiful St. Pete, and we were just given an overload of information, we decided to go play at a park at one of the ports in St. Pete. It was a beautiful park, and such a wonderful addition to our day. Isaiah really needed the time to unwind, especially after the long car ride to St. Pete and the long day we already had. He had so much fun, and it was cool enough outside that he didn't even flush! =0) That's a huge thing for Isaiah - that has been a daily part of our lives recently and something that happens when he plays outside. It was so cool outside that he didn't even need the cooling vest! =0)

After playing for a while, we decided to go find a place to have lunch . . . and to start our 3-hour trip home. Or so we thought. No, no ER trip. You see, we stopped for lunch and began reviewing the paperwork from the appointment. After looking through all the checked boxes for labs, we noticed that the doctor had forgotten to inform us that the labs needed to be completed at All Children's . . . which was now 45 minutes away from where we were . . . and it was already 2:30. So, back to St. Pete. =0)


We got back to the hospital, found the re-located lab (the hospital is under construction and all the outpatient facilities . . . except for the Rothman Center . . . had relocated to the new building), and registered for the lab work. By that time, it was around 4:30. Then, we waited. And waited. Yup, and waited some more. =0) At 5:00 or so, they took Isaiah back for the blood donation . . . they took 9 vials! Full vials, that is. Poor guy!!! During the whole process, the nurse missed his vein and decided to dig around a bit. Isaiah was already freaked out enough that he was going to get a "shot" (he sooooo recognized the lab decor), and began yelling "She's going to get me killed! It's not my turn, it's Bafanjoo's (my nephew) turn! Bafanjoo wants a shot!" Nine vials later, labs were completed and we returned to the car to begin our long trip home, rush-hour traffic included. =0)


Honestly, I'm not shaken by the diagnosis. There is still a large portion of Isaiah's actions that aren't covered by the diagnosis, so some things are more than likely the masto. Yes, the doctor did mention medication, but only one . . . and it will help with sleep . . . if we decide to add it (we still have to talk to the allergists). And why be shaken when Isaiah was Isaiah before the appointment? Isaiah hasn't changed at all - just how we help him understand the world around him. As Isaiah calls me his "Special Mommy," Isaiah is still my "Special Baby Boy" . . . and he always will be. He's the fulfillment of God's promise to me, and what a wonderful promise & blessing he is! I'm proud of him and I'm honored to know him - to be his "Special Mommy."

I love you, my Special Baby Boy!!!

3 comments:

Stefan said...

Dr. Alfred Tomatis, a French otolaryngologist, is recognised as the modern day originator of sound or music therapy. In the early 1950's he developed an effective therapy method using altered music to treat conditions such as auditory processing disorder, dyslexia, attention deficit disorder and autism. Another French doctor, Dr. Guy Bérard, developed a similar method, Auditory Integration Training (AIT), which has found many followers in the USA. From personal experience I know that many clients report improvements in understanding, speech, balance, behaviour and emotional well-being after just two or three weeks of daily sound therapy.

Sensory Activation Solutions (SAS) is an organisation with Centres in the U.K. and Turkey that provides a unique service for children and adults that face learning or developmental difficulties. When the established educational, psychological or medical services fail to provide adequate support, the SAS methodology often can provide practical solutions that result in noticeable improvements in daily life.

You may be interested to check out their Free Sound Therapy Home Programme. Their Auditory Activation Method builds on the pioneering work of Dr. Tomatis and Dr. Bérard and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of difficulties, ranging from dyslexia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and most importantly often effective. Check it out at: http://www.sascentre.com/uk/uk_free.html.

Hartley said...

Hi,

I stumbled onto your blog today and can TOTALLY relate!

My oldest son has High Functioning Autism (PDD-NOS) because his language was delayed, as well as Sensory Processing Disorder. I am right there with you!

And I didn't feel "suprised" by our diagnosis either, but my advice is to give yourself a few weeks to allow it to "sink in". I found I was more emotional about it than I thought. Each new piece of information is empowering, yet on some level is a new grieving experience too. :)

Thanks for sharing!
Hartley
www.hartleysboys.com

thedooligans4 said...

Yes, you are exactly right! He is still the same wondrous and beautiful child you have always known him to be... why be shaken? The diagnosis gave you some new ways to get him help, but it didn't change who he is. You are one awesome Mommy!