“I Don’t Want Autism.”

In early January, the results were back.  There was increased abnormal activity in the left temporal lobe.  The report called it “stable abnormal activity” which seemed just the epitome of ironic phrases to me.

The first EEG showed left temporal lobe seizures.  The second EEG showed no seizures on the left.  The most recent, in January, showed a reemergence of left temporal lobe seizures again.

Since his seizures are “silent”, I’m left assessing things as an “outsider”.  I see things that I can chalk up as silly behavior or as warning signs.  Underlying it all, I have this constant fear over what makes him do some of the things he does.  When he laughs hysterically, with no external cue, or when I must repeat the same question over fifteen minutes with no response, I worry whether he is having a seizure or how extensive the damage from it may be.

But even if I did know, so what?  It’s not like I can reach into the medicine cabinet and give him a bandaid to stop or fix it.

When I was younger, I had a persistent nightmare.  I’d need to dial a telephone number because there was an emergency.  No matter how hard I tried I never could get through.  I supposed back then that making a call in time, could always solve a problem.  But that was wrong.  And here I am.  I call the neurologist and explain how my son’s behavior says something is worsening – but my call can’t fix it.  I can’t stop the electrical battering to my child…

I deeply love a child whose level of disability rises and falls unpredictably.  One minute he’s winning the class spelling bee, playing with friends, hugging his mama.  The next, he is completely nonresponsive to everyone, or laughing hysterically like he’s being tickled to death.

At minimum, I’m on yellow alert.

A week ago, I took him to school.  A classmate asked him to play and the two of them wandered away.  I’m on Cloud 9, as I’m trying to keep track of him through the crowd.  But then his teacher approaches.  She pokes a hole in my cloud.  He’s taken another reading test, she says, and he tested at a 9 month level.  I don’t understand what that means.  She says, “Don’t be shocked, when you see the results,” “He must’ve been having an off-day,” and “I’m going to let him take it over again.”

This had been his strength.  When he started the school year, he tested in the highest five percent of all kids who took the test, across the country.  Now?  Not even close.  I call the ABA staff.  The new senior tutor agrees to be the one who supervises the retest.  He takes it over.  He doesn’t do much better.

The problems are quite defined.  There’s just no real answer.  No solution – no fix.

He’s crashing.  I’m dialing.  The neurologist cuts a dose of one med, orders another blood draw to check the levels of medication in his blood.  His ABA team talks -formulates a plan.  But I’m tired.  There’s always a “plan”.

I want answers.  I want it fixed.   Too bad for both of us.  And lately, I’ve seen faces, relatives, acquaintances, who give me looks of pity.  I’d rather they despised me than pitied me.  So, I just have to take it.  From both ends.  I call, let the “team” speculate and experiment on my son… and I have to accept that.

I’ve never accepted that.  I doubt I ever will.  I know there has to be a way and someday it will be found for someone.

I buy reading comprehension books.  He reads a paragraph and responds to the multiple choice questions perfectly without a prompt.  I have him do an online spelling test.  He gets 100 percent on his first try.

Then, we sit back to read “Owl at Home”.  The first story is about winter knocking at Owl’s door.  He has no clue what “winter” is.  He’s nearly 7 years old.  Even after I explain it to him, he tells me you wear shorts in the winter.  After five minutes, he is gone, though sitting right next to me.  I tell him to go play.  I head back to buy new materials to teach him about the seasons.

The other night, he was struggling to get through his homework after school and OT testing.  He wanted to give up.  I told him that a lot of times, he has to work harder than other kids because he has autism.  There was a pause, and then he said, very clearly, “I don’t want autism.”  

I answered, “Autism is not just about things being hard – it makes you who you are – you’re sweet, and good, and everyone loves you, and part of all that good is autism too.”  He was quiet, and gave me his tilt of the head, as though he was weighing what I said.  Then, his lips began to move with no words.  He started to echo.

And before I knew it, he was gone again- even before his body got up and he ran off to play.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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32 Responses to “I Don’t Want Autism.”

  1. akbutler says:

    Oh wow…wow. I am sitting here, pulling this all in.
    I’ve been alert for seizures that have never come…or so I thought. Now I am not sure, reading this. And the variability in connection and behavior…and that last statement…
    There is no pity from here – just complete and total understanding. And love. Truly.

  2. I want to say something comforting but I am at a loss. There really is nothing worse than watching your child struggle and knowing there’s nothing you can do. No parent should ever know that feeling. Yet, us autism parents know it and feel it just about everyday. As AK Butler said … No pity here. Just love and understanding.

  3. vaughanmom says:

    Along with Autism also came seizures for our little girl. Actually, they came first. At 9 months old she had the first one of now 15 plus that we actually know of. As if the Autism isn’t enough we live in fear of her going to sleep and possibly having one she never comes out of. She has been on medication for three years now. She does have breakthrough seizures that are usually connected to fevere, illness, etc. MRIs, EEGs have only been able to give us a small amount of information as to what is going on. I feel the same as you do—each time she has one—what did he just lose? She is 5 and while not completely nonverbal she has very little expressive language. Words she once had just disappear. We too live in a state of high alert. It’s exhausting. Totally. Completely. Understand.

    Hold tight. Stay strong for you and yours. Hugs.

  4. Flannery says:

    While we don’t have seizures to contend with, I do know the feeling of trying so hard to reach your child, only to feel that they have slipped somewhere out of reach. I know the feeling of being powerless to fix or change whatever is standing in the way of our children learning and connecting.

    And I hate it. I hate being powerless. I am so sorry that you have this “extra” challenge – this “thing” that keeps your baby hopping back and forth from being present to being somewhere else. I’m thinking of you, friend, and your beautiful boy.

  5. Mom2MissK says:

    Hi lady. First off, ((hugs)). I know the seizure thing. I HATE the seizure thing — the constant tinkering and experimenting it brings… and at what cost?

    I know you have a top-notch, awesome neurologist… but speaking from the point of view of someone who also has an awesome neurologist, I want to put a suggestion into your head. It may be time for a second opinion.

    Believe me, I wanted to trust that Dr. F knew what was best for Little Miss, but he just didn’t. Our recent hospital stay taught us that the Lamictal (which had worked just find for 8 whole months) was actually increasing the rate and severity of Little Miss’s seizures. It took a fresh pair of eyes to see that. I WISH we had called them in sooner.

    Remember, I’m here for you lady — especially when it comes to the epilepsy thing. I’ve got your back (and I’ve a got a shoulder for you too).

    • solodialogue says:

      I know you know. Meds or surgery or homeopathic remedies or a combo of all of it and still our kids have seizures. It’s tiring, yes- for our kids and leaves us helpless. I am not going to lie. I want it fixed. I’m glad you have fresh eyes and minds finding better answers. Much love to you. xoxo

  6. Teresa says:

    {{{Karen}}}
    Some days we take a small, tiny step forward and some days we take two giant leaps back. Or so it seems. This life we have is such an emotional roller coaster. And after 30 years I still am surprised at the challenges.

    Still, you are so much further ahead than many. You’ve discovered the seizure area and gotten on medications without seeing obvious symptoms. This is huge.

    Of course, we want everything better. We don’t want our children to struggle. There is no easy answer.

    Prayers for continued strength for you as you continue to be the voice for your son.
    Teresa

    • solodialogue says:

      You have been there so many times for me, like a mentor and I could never show you how much that means but it’s a lot! I had this crazy idea that as he got older, it would somehow get better- and it has in many ways but now that I know about the seizures I often wonder how many of those tiny steps forward are wiped out in one electrical surge. In any event, thank you for all your support. You are an amazing mom to both your children and watching Matthew from afar as I do, brings me smiles and strength. xoxo

  7. Hi, you might find this interesting: http://www.gwpharm.com/epilepsy.aspx

    Also: http://www.google.com/patents/US20120004251 (This invention relates to the use of the phytocannabinoid cannabidivarin (CBDV) and combinations of the phytocannabinoid CBDV with tetrahydrocannabivarin (THCV) and cannabidiol (CBD) in the treatment of epilepsy.)

    Also check out CBD for autism and THC for autism, though they are better in combination. Never use THC on it’s own. Always in combination with some CBD, preferably use whole-plant extract. Best of luck! x

    Any questions on treating autism with cannabis, I’m here. Any questions on epilepsy, there are many out there with experience.

  8. utkallie says:

    I too have seen steps forward and steps backward. It confuses me. What is that and why does it happen? I’m with T. I don’t want Autism either. I really have tried to embrace it but there are days where it just makes me mad and angry. I know you understand that all too well.

    Happy spring to you and T.

    • solodialogue says:

      I don’t know why for so many without the seizures, it’s just like those children who have the seizures -with the forward and back steps. I wonder- if we never knew about the seizures- would T’s autism still be the same?…

      I’ve come to the conclusion (for now) that I cannot excise autism from who my son is, and strangely enough, I wouldn’t want to. There are things about T that are clearly autism at work and they are awesomeness. Like when he says clearly and proudly exactly what he wants without caring what the other kids will say or think – or being able to tell a joke (yep!) without being nervous. Or being able to block out things he doesn’t want to focus on (blessing and a curse, that one). The working harder or finding himself isolated at times – that’s hard, but if I look close, there are some silver linings there too… But as for the seizures? I want them gone. They have nothing good to offer.

      Happy Spring to you, SH and Cam, too. xo

  9. Heartsore for you and your boy.

  10. Erin says:

    I so wish I had some words of comfort for you. I could tell you to be grateful for at least being able to catch the seizures on EEG (we have yet to have comfirmation one way or another), but that hardly seems a comfort right now. I am sorry you and your little guy are going through this. It may be possible that the ups and downs have nothing to do with the seizures. It may be the day-dreaminess, the disappearing of sorts, is just the autism. At least that’s what our neurologist has tried telling us… Cold comfort, I know… It’s something to hold onto anyway, especially when there is nothing to be done. That helpless feeling is just awful, and now I am feeling helpess to help you. Prayers and hugs for you and your little guy. Prayers for answers, and perhaps a solution. Hugs.

    • solodialogue says:

      I’m always grateful for kind words and prayers. This is just life, eh? Sometimes, we all get tired. This post is just one of those times. Thanks for your kind heart.

  11. I am sorry you are at such a bad place. Something that helps me is to remember that one of the hallmarks of Sensi’s autism is her asynchronous development. She just doesn’t do things at the rate or order that the other kids do things. Conferences helped me remember that again, she’s making progress, but the benchmarks have moved since she is at the end of 1st grade now. You are doing great, you are an awesome mom, keep doing what you are doing and it will start to feel like progress again soon.

    • solodialogue says:

      You do have a grounded and reasoned perspective that always makes me think. Thank you for being such a valuable bloggy friend. The benchmarks are changing for T as he finishes 1st grade like for Sensigirl but this last testing shows him failing the benchmark he set for himself when he took the same test at the beginning of the year. That’s some hard evidence that something is amiss. And so we have to look for the latest missing piece of the puzzle. I’m so glad you are here while we search. xoxo

  12. Thorgerdur says:

    I have read your blog for a long time and you have very often posted links and ideas that have been so much help …your dedication tells me you will find a way …meanwhile i send you my best wishes and hugs…no pity but compassion…

  13. Lana Rush says:

    I’ve got nothing for you, Miss Karen. I just get so tired. The reading, the research, the experimenting, the med increase, the med decrease, the diet…. It just wears on you after so long. With no end in sight. I want it fixed, too.

    • solodialogue says:

      I know you do. There are so many things I want to say just to you, Lana but they are better put into another post. I send you & Lily prayers and love Just know this- you and Lily are in my prayers every day. We are all very tired. And sometimes – that’s okay. xoxo

  14. Reading the post I realise that whatever I say would not support you. I can only pray that the situation improves and you are able to cope.

    Blessings

    Shakti

  15. Emily says:

    I read every post on your blog, but never respond. But when I read your most recent post, I felt I had to… I have a 5-year old boy with autism, and he has always been delayed in every milestone. But he made great, steady progress until he regressed at 3 years old. We checked for seizures, but it just seems for him to be the nature of his disorder. Now, very little if any progress is made, even with ABA therapy. I feel my boy slipped away from me at 3. Sometimes, I have him back if only for a minute or two, and I see that same sweet, “with me” child. Then, he is gone. He isn’t there most of the time, and it breaks my heart everyday. I wait for the times that he seems to be back, the times he actually uses a single word, and then…. more waiting. It feels like he is drowning, and no matter how hard I try, he continues to slip into the depths of autism.
    You are not alone, and I am praying for you and Tootles.

    • solodialogue says:

      My heart aches for you and the regression that you witness with the preciousness that is your son. Each of us takes our own roads to try and find the way to heal and to find hope for our children. In the end, we all want the same thing- healthy, happy children that are able to have the best level of self sufficiency they can achieve. In other words, we love them from the depth of our souls and we do our best by them.

      It’s hard when they go backward-when we know there is no cure in our cabinets we can give them. We have to turn to each other for hope- to see it in children like our own that surround us. It’s a hard path but it always helps when we can see that we donor walk it alone. Thank you for your prayers and know that you will be in ours as well.

  16. Oh honey, love and hugs. I wish I could give them to you in person.

  17. Lisa says:

    I have no idea how I missed this post. None. I am so, so sorry. I would have responded immediately if I had read it back on the 22nd.

    We had Tate evaluated for seizures…and it came back that he was in the normal range of brain activity, so we moved ahead assuming he was seizure-free. We are still in that space. As far as I know, Tate does not have epilepsy…but even so, we see similar leaps forward where he’s got tons of positive progress…and then it seems to stop, and he has regression, and falls apart. We just went through one of those periods. It took a lot out of me…like so many have said here, there is not much worse than watching your child struggle and flail about in this world. This world that they will never quite fit into. But we keep trying. We keep figuring out different ways to help our boys succeed..to grow.

    Keeping you and T in my thoughts and prayers..

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