Jake’s Therapy: Sweet Jake

My sweet little Jake is back!   Most mothers say those words after their son has been away at college or spent a year or two being deployed.  My little guy didn’t actually leave my house, but was somehow replaced by a very nasty entity.

If you don’t know what I’m referring to, you can read this ( https://sistertwo.wordpress.com/2011/12/27/jakes-therapy-practically-petrifying-in-every-way/  ).   If you don’t have time to read another essay, the short version is that a horrid monster took over Jake for about a month and was driving me to migraines and tears.  And I had to restrain myself from making weekly runs to the liquor store.  (I’m not a drunk, promise!)

It really boiled down to the poor guy being exhausted.  I put him down when he acted/looked tired and he would spend the  next two hours doing backflips in his bed.  Because of his sensory disorder, he frequently gets more and more ramped up the more tired he is, and resists settling because his sensory system doesn’t like being still.  So, actual sleeping got pushed far into the evening and bedtime got pushed sometimes until the wee hours of the morning.  In desperation one day, I grabbed him in the middle of a screaming fit and swaddled him, just like we used to when he was only a year old.   I remember that swaddling, which puts deep pressure all over him and calms him,  being highly useful when he wasn’t sleeping enough as an infant.

The first day of swaddling, I sat and watched a movie with him (Disney’s beautiful documentary on Oceans) and he conked out in about five minutes.  Days two through six were the same.  He was asleep by two-ish, awake by four-ish, and happily padded off to bed around eight.  And, just like that, my sweet Jake came back to me.

Which is a very, very good thing!

We are currently meeting with a physical therapist on Fridays and an occupational feeding therapist on Mondays.  I’m struggling, with my own health problems, to make the time to do both kinds of therapies right now, but we are muddling through.

When Jake was in the height of being taken over by a monster, both therapists recommended that we see a child behavior specialist.  The PT, however, told me that she believes that Jake is autistic.

I need you to understand that I DO NOT CARE IF JAKE IS AUTISTIC OR NOT.  I have an autistic nephew.  I have friends with Ahsbergers.  I love and adore each of them and my life has been enriched with their quirks, sensibilities, and frequently startling insights and compassion.  So, if you think I’m scared of that diagnosis, get off it.  I mean that nicely, of course.

The problem I had was that we’ve been told that Jake has sensory problems, but is definitely, for surely, no way, on the autism spectrum.  He is so very appropriate in the social/emotional category, which is usually one of the first clues that something isn’t quite right.  So, I was a little bothered that this one therapist, who I have struggled to understand and communicate with anyway, suddenly was popping out the autism diagnosis.

Fast forward to through a week of intense internal questioning and feeling like my world was spinning lopsidedly.  Without trying to give anything away, I asked our other therapist a series of questions about an autism diagnosis for Jake.    She explained the situation as follows:

If a child is suspected of being on the autism spectrum, he or she will be tested in three categories-social/emotional, sensory, and I forget the other one. Each category has several subcategories of behavior.  To be given a spectrum disorder diagnosis, he must display three behavior subcategories in at least two of the top categories, for a total of at least six.  So, it is unlikely but possible that a child with perfect social/emotional behavior could indeed be autistic, but would display those behaviors only in the other two categories.

Our poor service coordinator is swamped with over 60 kids in her caseload, so it will be awhile before I have anything to report as to a diagnosis.  I really don’t care one way or the other.  I really want him to get the help that he so obviously needs, though and if a diagnosis si the way to do that, then my opinion is, let’s get it done.

Since all that happened and we adjusted Jake’s little attitude, I think that I am finally on the same communication page with both our therapists and we are moving in a better direction.  I now have concrete things to work on with Jake every week and I don’t feel confused and helpless and discouraged at the end of every appointment.

Now that we are back on track, I’m hoping to post a little more regularly about Jake and where we are.  I felt that posting, “Um, I have no idea what is happening.” wasn’t really that useful.

Thank you, as always, for your love, support, and prayers.  You guys are amazing!

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5 Responses to Jake’s Therapy: Sweet Jake

  1. cheekypinky says:

    *phew*

    So glad it was as simple (and tough) as just needing more sleep!

    Poor little guy–
    he must get so frustrated,
    and he’s not old enough to have a beer! 🙂

  2. Ruth Dyer says:

    Lol…greg hasn’t given his son a beer and Mary is not a lush…so glad we are clear on these things 🙂 but seriously I am so encouraged that he is able to rest as I am sure that gives you a bit more peace and rest as well…yeah for bring back the swaddling!

    Love you!

  3. Mary, you’re an encouragement. I’m catching up on this, laughing and crying through a LOT of them. My (monster) sweetheart, wonderfully emotional, Anna is going to be 9 next month and it seems like yesterday we were doing the noise-dampening headphones for the toilets and the vacuum, cutting every tag out of clothing and sometimes just wearing them inside-out, etc etc… It gets better and as long as you have good info on how to help Jake cope (and you guys too) you’ll see him outgrowing those little quirks and growing into new ones that make you laugh and cry and scratch your head in wonder at least once every day. =P

  4. Kiersten says:

    Love you friend.

    By way of encouragement, and I mean this will all due respect to those professionals who actually know what they are talking about, what on earth would make the PT think an overly-tired child is not perfectly normal when behaving like a monster? My kids behave like monsters when confronted with significant challenges too…and sometimes just cause they feel like it. 🙂

    Way to go on the swaddling. 🙂 You are such a great & insightful mom.

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