July 3, 2018

Dear Universe

Posted in My Take on Autism tagged , at 10:13 am by autismmommytherapist

Dear Universe,

 

Okay. You win.

Here’s the thing Universe. Whether you acknowledge it or not it’s time to cut this family a break. We have remained collectively upbeat this past twelve months despite some really nasty life changes I won’t go into here, plus the chaos of our house almost burning down and the four months of repairs that ensued.

We have been really, really mature.

I probably brought this on us by allowing myself to breathe a sigh of relief this fall when things were looking up. You see, I relaxed my vigilance with autism and its never-ending surprises, and that’s when catatonia came to call.

You got me universe. With the onset of puberty I was gearing up for seizures and renewed aggression. I’d never even heard of autism-related catatonia.

Again. You win.

But here’s the thing universe. This family has weathered Justin’s aggression, insomnia, refusal to eat, eating too much, extreme OCD, refusal to potty train, and probably a host of other issues my very tired brain has blocked out to survive. Each time, Jeff and I sucked it up and went at each issue with a many-pronged approach, employing behavioral techniques, using medicine when necessary and being vigilant in our efforts to help our boy. The truth is universe, it gets more difficult for us every time because we’re older, which doesn’t bode well for us since we’re looking at at least another decade of full-time care of our son, and probably much longer than that.

I guess what I’m saying is I’m reaching my “sucking it up limit.”

It’s been eight months since Justin’s symptoms started, and the irony of it all is we’ve consulted four different practitioners, and there have been five different diagnoses trotted out for him (yes, I said five). Of course, just to keep things fun, these five different diagnoses all have completely different treatments, so I anticipate if things don’t improve for Justin, trying everything out could take until he’s twenty-five.

Okay, maybe another year, but it will FEEL like he’s twenty-five.

It’s been a long eight months, universe. The thing is this thing he has, whatever it is, is a game changer. I’m not sure he won’t get kicked out of camp because of it. I worry no twenty-one plus program will take him with it. If his symptoms progress I worry about his residential care, because at some point dear universe, Jeff and I will need someone to take care of us, and I can tell you right now that someone won’t be our eldest boy.

In other words universe, this is a big freakin’ deal.

We’re making some changes with him medically, and I’ve been told both that the symptoms can go away or at least go into remission, so we do have hope. We’re doing every suggestion that’s been made to us (like we always do), so universe, I’m asking you to come to the table and do your part.

Help my son. It just can’t be that hard.

I hate whatever the hell it is that he has. When he’s in an episode, he is robbed of all joy in his life. When he’s not in an episode, he is the happiest, loveliest child ever.

Bring back that child.

I want him happy, healthy and whole. I want him to be able to enjoy the summer, this season that he loves so much.

I want to see him smile.

Pony it up universe.

I’m waiting.

 

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6 Comments »

  1. misifusa said,

    May your every wish and relief be granted now to you and your family, especially to Justin. Sending prayers for you all xo

  2. All of this sounds so hard and you have been doing everything and anything you can to make life better for your son. My heart aches for you all. May God’s gifts of peace and healing come to each of you.

  3. Amy Rangel said,

    Kim, I cannot even begin to imagine all that you are going through. All I can say is that you have been relentless, patient, just to name a few. I truly hope that things settle down and that your Justin is able to enjoy things so that you can too! Love you!

  4. Libby said,

    Big hugs to you, Mama, and to Justin. You love him so much, and you are so good to him. I hope he’s feeling more like himself soon, and I hope you can get some rest ❤️.

  5. Kimberlee,
    A man goes to God with complaints about the cross he has to bear and asks for a different one. So God takes the man’s cross and disappears with it into a room. God then leads the man into the room which is filled from top to bottom with crosses of all sizes and designs. God said to him: ” Go and choose the cross you would rather have.” So the man searches and searches for some time. Then gleefully says: Lord, this is it! This is the cross that I want to carry.” God replies: “But that is the one you came in with.”
    Kimberlee, I have no idea why we are given the crosses we must bear. All I know is the one I carry is mine and all I can do is the best I can. When, at times, I may reach what seems the end of my rope, I don’t petition the universe, but rather I petition God. It’s personal and I know I may not get the answer I want but I have comfort in knowing that I have His ear.
    God Bless. No suffering comes without a greater good. Hang in there.
    -Alan


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