Where There’s a Will…

…there’s a way.  Last night, as I was laying in bed, it dawned on me how I can pay for therapy for Ace.  If I pay for a few hundred dollars worth up front, I can submit to my FLEX spending and get reimbursed within a week or two.  So that way, we’ve got a month or two of therapy paid for, then that gives us time to save up for the next group of sessions.  I called back first thing this morning to let them know I want an appointment so we go at 1:30 pm on Thursday.

The therapist called me to set the appointment and I liked her.  I gave her the brief version of what we’ve been through so far, and why we stopped seeing the last Occupational Therapist (OT).  The last one was good the first visit, but the second visit, she kept saying how Ace seemed “fine” and asking me if I felt he needed the therapy, which made me question myself and feel like I was wasting her time, so we never went back.

But today, I told L (the new therapist) that what the last therapist concluded after just two hours with Ace was not the whole story, and that I am with him 24/7 and I know he needs more.  I told her that I agreed with some parts of Ace’s previous evaluation, but other parts were off base (for instance, I believe he has low registration (meaning he needs more sensory input to “register” with his sense) but I don’t think it’s auditory as the last OT concluded.  I am certain that it’s vestibular.  Here’s an excerpt I found on the web to explain it a bit better:

The child who is underreactive to vestibular input doesn’t seem to get dizzy even after spinning for a long time, and seems to enjoy fast movement like swinging. She may be clumsy, and may stumble or fall frequently. She may not make an attempt to catch herself when she falls…

I also believe has has proprioceptive issues as well, which refers to body placement and the awareness of where the body is in space.  People with proprioceptive disorders can be clumsy and uncoordinated.  He has some very refined fine motor skills (you should see him stab a piece of food with a fork, then hold it up in triuph and yell “STAB!”) but at the same time, he is, as A-M, our EI coordinator dubbed it, very “floaty” when he walks and is somewhat clumsy.

I guess we’ll find out soon enough how accurate my mommy-diagnosis is…

The one thing that’s been weighing on me, though, and hopefully we will have answers to soon enough, are the possibility of Asperger’s Syndrome or high-functioning Autism.  I don’t believe Ace is “classic” Autistic — the uncommunicative type that generally comes to mind when you think Autism.  But ironically, as far back as before he was discharged from St. Joseph’s Hospital after his birth, I have felt and worried he is Autistic.  I don’t think it’s even possible to diagnose a 20 day old premature infant (change that to I’m SURE you can’t) but I felt it then, and the feeling has come and gone these past 18 months.  If you read back to my May 1 blog post, a commentator relayed her situation with her son who has Asperger’s, and I’ve also received other private messages about friend’s children with Asperger’s.  There are definite similarities.  He has some oddities that make me wonder, but I’m not going to go into detail now.

My head says that he is not Autistic in any way, but my heart isn’t so sure.  If he is, he would definately fall on the high-functioning end of the spectrum, and I think at worst, he’ll be a little “odd” to those who don’t know him, but nothing to impair his quality of life.  I hesitate to even mention these concerns here, as I may be completely off base (and will happily stand corrected), but I feel like I need to be prepared…  just in case.

I need to upload some pictures to our family web site so Skip can write his funny comments, so I better get working on that.  I still need to carve out time to update on the boys’ 18 month well baby visit with the pediatrician as well as their 18 month dental exam.  Perhaps tomorrow.

4 Replies to “Where There’s a Will…”

  1. Luckily Autism and Asperger’s are better studied than most childhood diseases. There is a new study out on Autism in toddlers and that they have a bigger area of the brain than most (I cant really remember the details but it should be easy to find. It was one of the top ten headlines a few days ago on the CNN home page). If they rule out Autism and Asperger’s dont expect a true diagnosis soon though. I have a friend whose daughter is severely disabled and is seven years old. They still dont know what is wrong and the doctors have given up. But she hasnt though. What is nice about therapy is that you dont always need a diagnosis because you are treating the disability like sensory issues, loss of balance, low muscle tone, etc. So there is always a benefit to therapy without a diagnosis.

  2. I had that feeling about Nick, too. I remember staring down at him at 6 weeks old thinking I was positive he had autism – or would develop it. I can’t even describe that feeling, but I know you know exactly what I mean. I did ask to have him eval’d and thankfully he doesn’t have autism. He was just so locked inside himself because of the SPD. So hopefully that is the same that is going on with Ace.

    I still feel Nick is very vulnerable and it’s one of the reasons I haven’t pursued vax. There’s no rationalizing… it’s pure instinct. If you want to run some of your concerns past me, I’d be glad to lend an ear.

  3. It is really amazing how we manage to deal with things and come up with ways to resolve financial issues.

    I am soooo glad you had that “a-ha!” moment to fund Ace treatments. I will have you in my thoughts and prayers ;)

  4. Hang in there! I think I was the one who left the lengthy comment a while back about our son who has Aspergers. Just a side note…I, too, felt that there was some “issue” when he was in my belly. Maybe I thought that b/c I was always stressed out b/c of work while pregnant with him, but nonetheless, I could feel that we’d be dealing with “something” possibly Autism related but NOT Autism in the future. I just blew it off as nervous pregnant girl stuff. So….trust your Mommy instincts!
    Hop forward to taday…well – yesterday morning that is – when I went to our son’s pre-school to do the end of school year eval and the teacher said that he’s come SO FAR and that he doesn’t even really appear to be “on the spectrum”. She said that sure he has oddities, but that’s just him….and most of the typical kids and “PLACE kids” (special needs that is) all have oddities and issues to some extent. They even placed him in a regular/typical class for Kindergarten next year. :) Woot Woot…Go Aidan!!
    So, for us, although Aspergar’s/Autism is a handful to deal with…..we feel and know (as you will hopefully feel soon enough) that all of the struggeling in Aidan’s early years is paying off because he seems to be thriving and flourishing. His Asperger’s can be challenging at times, but as his teacher said….It’s what makes Aidan….Aidan…and Aidan is Awesome, hilarious, sweet, etc.
    So ,hang in there Mama….as long as you have a really good therapist, a lot of patience, and determination….you’ll get to the bottom of this and you’ll see Ace flourish as well! :)

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