March 7, 2012

Clarity

Posted in My Take on Autism tagged , , , , , at 10:28 am by autismmommytherapist

“No Justin, not yet honey”, I say for the hundredth time in what I like to call my “faux calm but really freaking out voice”. Once again I block my eldest son, who has moderate autism, from pushing the button which will gain him entrance to the inner sanctum of Children’s Specialized Hospital. My choice to prevent his entrance is met with more tears and tantrums, and at the sound of his elevated distress, the kindly nurse who just took his blood pressure and weight statistics comes out of her office yet again to offer her assistance.

We’ve reached the end of perhaps the longest half hour I’ve experienced in quite a while. I’ve just spent thirty minutes filled with my distraught boy trying to escape the “evil confines” of the waiting area, a room with which he is completely familiar as we have been here many times before to meet with his former developmental pediatrician. The nurse has even gone so far as to slide by Justin into the back of the building and tell the new doctor to “hurry up”, an action which has made her my new best friend.

I share this life-changing information with her, and she laughs. Finally, a mere fifteen minutes after our scheduled appointment (but in reality, a lifetime for me), the secured doors slide open, and our current developmental pediatrician makes his appearance.

Justin is less than impressed.

The next hour is spent with me trying to entertain my eldest with the twelve thousand preferred toys I’ve brought, ones which usually engage him, while I simultaneously try to make it clear to our practitioner in some semi-coherent fashion why we’re actually here. I am distracted by my son’s myriad attempts both to don his coat and make me wear mine, which will signal our imminent departure, and by the loud intermittent whooshing sound of the heating vent which is preventing me from hearing half of what the doctor is saying.

I ask him if the vent can be turned off so I can hear him better. Of course, it can’t. I scrape my chair in closer to him, an action which momentarily gives Justin hope that we are leaving, and leads to a burst of greater protests when this does not become reality.

I remind myself that during most doctor’s visits Justin is compliant. Today, however, I am taking one for the team.

As our practitioner spends a few minutes conducting a physical exam on my son, I allow my mind to wander to my youngest child. He has autism too, although his is very mild. Zach is at the moment living out one of his dreams to be a paleontologist, as his entire pre-school is currently engaged in a dinosaur event of the greatest magnitude. I sit back in my chair, and am struck by the dichotomy in my sons’ days. My eldest, desperate to leave his current situation. My youngest, witnessing a volcano erupt, using tools to excavate “ancient artifacts”, and consumed with joy as he acts out his current preferred vocation.

And I fully admit as my son’s exam is concluded, and he heads once more for his coat, that I wish I were with his little brother.

The truth is, I’m tired, really, really, tired. This is our third stop in the “gathering opinion tour” as to how to help our son, who has regressed in terms of behaviors and overall demeanor since an illness struck him four months ago. I refocus my attentions on our pediatrician as he suggests a new medication plan, one completely different than the one suggested by the medical brethren at CNNH. I mentally catalogue his reasons behind the suggestion, hoping I retain them long enough to share them with my spouse. These are serious drugs both practices are offering up to us as solace to Justin’s increased aggression and malaise, and the decisions his father and I will make are soul-suckingly difficult.

At this moment, I just don’t feel like making decisions anymore. Of course, the thought chaser is, I have to.

We wrap up our visit, Justin all smiles and joy at our impending departure, and I manage to corral him within the office long enough to grab a scrip for his current prescription. We head for egress, he fairly dragging me along, his doctor asking us to wait in the foyer for some important information he will print regarding his medical suggestions. Justin and I approach the sliding doors, and there is no longer any chance of containing him. The information will have to wait.

And as we head for the car, braving gusts of cold wind which Justin seems to enjoy, I silently ask the universe for some quick solutions, and clarity.

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14 Comments »

  1. Gab's Mom said,

    Thank you.

  2. mamafog said,

    That sounds difficult. Wishing you and yours the best.

  3. Jessica said,

    Kim,
    I have been trying to find out how I can participate on your blog and get a chance to speak with you. I am not very computer saavy so I may not be signing up correctly. I live in Red Bank and have a daughter on the spectrum and wanted to ask about parents experience with certain providers. I hope this email finds you!!
    Thanks
    Jessica

    • Jessica, thanks for reading. This is a great place to reach me. If your questions are more private in nature we can work something out. We’ve seen a number of providers in NJ, hope I can be of help!

      • Jessica said,

        Thanks. I have seen many, many doctors through the years. I realize I need more comprehensive evaluations, especially to present to the school who is not helping my daughter appropriately. I am looking for a good neurologist, neuropsychologist, S.T. for language issues. If you or anyone else has some good providers to recommend or not recommend I would love to learn this information.
        Thanks to all.
        Take care,
        Jessica

        • Jessica, of course every doctor is not a fit for every family, but here are some professionals that might be able to help your daughter:

          Neurologist: Dr. Mintz, CNNH (Center for Neurological and Neurodevelopmental Health)
          (856) 346-0005- very highly recommended, multiple awards, etc.

          Developmental Pediatrician: CHOP Phil. (through Autism Speaks Network) Dr. Amanda Bennett (267) 426-3023
          (I would make sure to see her)

          My son has an excellent private speech therapist in Freehold. I will ask her if she is taking on new clients.

          I don’t know of any neuropsychologists, but the two agencies above might have some ideas for you, or might have that type of practitioner on staff.

          My best to you and your daughter, will be in touch about the speech if she has openings!

          Kim

  4. Misifusa said,

    Your candor, frankness and honesty breathe throughout every post. I am so awed by you and how you continue to find the best solutions for your family ~ I am so proud of you as well.
    Keep up the great work. xo

  5. Cindy Toomey said,

    (((Kim))), I wish those things for you too.

  6. Chad said,

    Hang in there. Your strength will see this through.
    Thanks for the birthday card!!


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