September 29, 2015

No Silver Lining

Posted in AMT's Faves, My Take on Autism tagged , , , at 10:04 am by autismmommytherapist

Summer 15 003

Warning to my readers- this won’t be one of my typical “find the silver lining” type of posts. Today I’m telling it like it is chez McCafferty, and what it is includes a very tired Mom.

I have a feeling a lot of you can relate to that.

My oldest son Justin, who is severely autistic and also diagnosed with OCD, has been really struggling the past few months, and the last week in particular has been grueling. His struggles have gone hand-in-hand with triumph (I got him to lose fifteen pounds this summer and he’s on Risperdal, his neuropediatrician was a little in awe of me,) but our success has been tempered by his compulsive behaviors. Justin’s had OCD (and obviously autism) his entire life, but in general the OCD-like behaviors have been very manageable. They often included a bit of reorganizing, making sure a toy was strategically placed in a certain room, etc. We’ve been able to roll with it, and it hasn’t really disrupted our lives or his.

That is until reorganization became his full-time obsession, much akin to mine with chocolate.

This probably doesn’t sound so bad to you, but here’s the thing. He’s throwing things behind furniture (that often his short mom can’t reach.) My boy is putting objects under other objects so I literally have no idea where they are (like my phone, OMG.) But the worst is his almost fifty-year-old mom now relies on visual cues to do anything, and now things and important papers are entering the OCD Bermuda triangle and I don’t even know they’re gone and that I need them.

Trust me, I am a woman who relies on her visual cues.

We’re doing all the right things to counteract this behavior- redirecting to the computer, his DVD player, movies on tv, etc. We’ve been back to see his neuropediatrician, who has made a med change we hope will kick in within two to four weeks (or five minutes ago if I had my way.) But in the meantime it’s usually just me with him at home, and the problem is I can’t always stay with him for his redirected activities because of laundry/phone calls/making lunches/trying to find my phone that I hid from him.

Once again I wish wholeheartedly for the attractive Swedish “manny” to make his appearance.

But even though his reorganization tactics have wreaked hell on our household (he once threw out all my sticky notes, it was like the world ended,) the worst part is that when he’s doing it he’s miserable. There’s no satisfaction derived from him for angling a book a certain way on a countertop, or reallocating certain toys to different bins in our garage that hosts every toy he’s ever had from 2003 to date. He often gets upset when things just aren’t right, and believe me, nobody has any idea how to make them right. Sometimes he just cries in frustration, and there’s not a Baby Einstein video in the world that can snap him out of it.

Trust me, in this house if Baby Einstein can’t fix something, things are in dire shape.

I’m hoping his neuropediatrician is right and the med changes will help alleviate this behavior, and I hope so both for him and for all of us. I hate seeing him so unhappy, and I frankly I also hate the 24/7 surveillance I’ve had to put on him so my car keys don’t end up in the garbage (they’d have company with those sticky notes I rescued.) I shared with you that today there’d be no silver lining, and there isn’t. My boy is the best, but sometimes his behaviors are really tough, and this week I’m just tired of how damn hard things are some times.

And I have a feeling many of you can relate to that too.


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16 Comments »

  1. leeannr said,

    So sorry to hear about this and hoping the meds kick in ASAP. Send him here, Jenna’s room could use some organizing!

  2. Joyce N Vai said,

    No judgment here whatsoever! In fact, scoot over and let me join you in your ranting canoe! Hehe! I thought I was the only one having a tough day yesterday. I am so glad you shared about it! While we aren’t on the OCD bandwagon, we are definitely with you in how things don’t seem to satisfy and the cries that go un-soothed and a Mom who is at wits end as well. The helplessness I am overwhelmed with is so unbearable at times that all I can do is cry even for a few minutes just to regain sanity. So I hope you take that time to let it out…however you do and just know that while today you can’t see the silver lining, its ok. Maybe it’ll be back tomorrow 🙂 Hang in there, sending good vibes your way xx

  3. P said,

    My son organizes stuff around the house too…it had escalated from just his toys to everything he can get his hands on. We had a very tough summer with less services than he is used to, I thought that elevated this behavior…OCD never entered my mind. Should I get this checked? By what point does the child need meds? Sorry, but your post got me thinking!

    • No apologies necessary! Did the behavior stop after he went back to school? I’m a firm advocate of getting things checked out. Justin goes to a pediatric neurologist and that’s who dispenses his medications. My advice is to find a good one and make an appointment- it may take up to 6 months to get it. That way you have the appt. if you need it, you can always cancel it. We started Justin on meds for autism and OCD when he was five. Not an easy call but necessary. Thanks for reading!

  4. misifusa said,

    Huge heartfelt hugs to you all, but especially to you for holding it together and for using your exceptional blood-hounding talents constantly to find your sticky notes, keys, etc. You are an awesome Mom ~ may the meds kick in yesterday…xoxo

  5. NickyB. said,

    Hang in there! I can definitely relate!

  6. I could barely get out of bed this morning.
    >insert witty comment here<
    zzzzzzzz….in sisterhood,

  7. Many of us bear some cross and can give you some solace in that you are not alone. You show patience and an attitude that it is too soon to give up. Your son is all the better for it.
    I hope the adjustments in meds, etc., will bring some resolutions. In the meantime you have my prayers.
    -Alan

  8. Dar said,

    Our younger boy is obsessed with containers so he can carry his little toys around. He frequently raids our Tupperware cabinet for any size container, ranging from the smallest that can hold one little figurine to the biggest that will handle dozens, all depending on his current mood or need, I guess.

    Not nearly as bad as throwing out all your sticky notes(!), but when we see five little soaps by the bathroom sink missing their bowl, or my wife’s jewelry dumped on the counter and the box missing, we know what’s happened to it. We may wind up getting him his own set of Tupperware for Christmas.

    Hope the new meds kick in and help out!

    Oh, I might suggest getting some of those sliders (“Supersliders” on Amazon) to help move couches and such around so you aren’t knocking yourself out looking for your phone, etc.


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