No Way Back.

I can click and get access to the internet; drive through a fast-food restaurant and get a meal; aim and point a remote and get a movie; push a button and have popcorn in 2 minutes and 30 seconds; or hold down a button on my iPhone, and be connected. Is it any surprise that I have been conditioned to think that when I get a diagnosis for my son, I should receive an instant cure?

Seizures are scary business.  People can offer support and shock but at the end of the night, when I’m tucking my son in bed, it’s just us.  His seizures are happening silently.  No signs.  No tells.  So, how am I supposed to know what will work to stop them, or if they will stop, in fact?  How long is it supposed to take?

You may be wondering if I put him on medication or not, and why.  It’s the big elephant in the room, isn’t it?  Would it really make any difference, at this point, if I told you?  Medication does not work like the microwave, Netflix or the good internet connection.   It takes time.  The right med.  The right dose.  The right effect.  And none of that is instantaneous.

I’ve read a lot of posts about whether the parent of a child with autism has chosen to medicate for a variety of reasons.  There are definitely different camps on the issue.  There are those people who believe no one should use any kind of medication.  There are those who will take any medication prescribed by any doctor.  And then there is the rest of us, who all fall somewhere in between.

As for me, I am afraid to give my child (or even myself) a medication because of the side effects.  But regardless of my “feelings”, my duty as a mom, is to rationalize and balance the objective facts with my subjective fears, use observation and intelligence and achieve a reasonable outcome.  And that is what any of you, in my position, would do.

As I walk myself through this decision making process, I find a well worn path ahead.  Others have walked this path before me.  Some are veteran guides who share their knowledge of the way.  By doing so, they’ve mapped the road and warned of the dangers. I recognize and understand what looms ahead. I know what it should look like.  Knowing where the dangers are and how to navigate around them, if they appear, helps me to feel a little more in control.

But I haven’t ever actually seen any of these dangers.  I worry that I might not recognize them, or they might deceive me.  I think I see them and then they disappear, leaving me wondering if I am seeing a mirage.  The guides don’t know my son’s stamina.  They don’t know whether his little body can walk this path or how far he will get.

But now, if I try to look back, or turn us around to run the way we came, I find that the road backward is gone.  It’s simply and cleanly cut off.  Like a hanging bridge, the rope’s come undone.  The bridge has fallen. There is no way back.  We can only go forward.  And it is up to me to make the next move. A decision that will affect my innocent little boy’s life.

His beautiful doe-like eyes, with their extra long lashes, look up to me.  He places his hand in mine and holds tight.  His small and pouty lips give me the mommy kisses and hugs.  The ones that convey that complete, unwavering trust that I will make the right decision for him.  Every good part of me longs to make everything right with the world for him.  Everything inside me screams for an instant and permanent stop to the electrical assault happening inside his brain.

Knowing there is no instant cure, and no cure at all, I have to make his world the best it can be.  I have to push his boundaries, and keep him safe, all at once.  I have to do it by feel and by reason.  My husband defers to me.  He has missed the discussions, the debates, the research, the mapping.  He too, trusts me to do what is right for our child.

As we inch forward, there are no lights showing the way.  There are only grooves formed from the fairly empty, sketchy road before us.  Unpaved, and sometimes overgrown areas that obscure the course, do not stop us.  Beneath us is solid ground.  If we follow the best path with the least obstacles, and I look deep within, I will find our answers.  It will take time, work and carefully planned and executed choices.

With each step forward, the road behind us disappears.  I am in charge of our future.  And no matter the voices around us, his outcome is, in reality, based on my solo dialogue.

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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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11 Responses to No Way Back.

  1. It is a journey, Karen — one where we can slip off the path and maybe even find another road less traveled. Things will work or they won’t, but we have to keep trying — for our kids’ sake.

    I hope you find your way and I know it will be the best possible choice for T. Have courage, momma. ((hugs))

    • solodialogue says:

      We do have to keep trying don’t we? Sometimes it is scary when you realize there is no going back if you glance that way. And then facing forward is just as scary because you can’t really see where you are going…

      Hugs received and returned ((()))

  2. blogginglily says:

    Lotsa pressure for one person. I know that my wife has felt a lot of relief since I’ve been really insinuating myself into the process. It was soooo much easier to just let her shoulder the whole burden, but soooo unfair.

    • solodialogue says:

      You are a good daddy, Jim. And what a lovely gift to your daughter that you are making a record of your journey with your blog. Lily’s mommy and the girls are blessed. 🙂

  3. Danica Corey says:

    I feel for you sweetie. My husband & I struggled for a long time after PA began to have seizures whether or not we were giving her the right medication. We could not give it to her because they were grand mal seizures, but lucky for us the first one worked. The issues came 6 months later when she became very aggressive on the Kepra so we took her off of it. Was fine for a long time till the seizures returned. We have since added a vitamin B6 to the mix . Apparently recently they discovered the medication was robbing the vitamin from my child’s body making her aggressive.

    It is never an easy to make the decision to medicate or not. The way we looked at it was if it was not interfering with her everyday functions we were not going to medicate. However as soon as it became a safety issue we had to do it.

    I have no worries you will make the right choices for T & he will thrive. Lots of **hugs** I know it is hard. None of this is easy for any parent & like Karla said we have to make the best choices for our kids & keep going.

    • solodialogue says:

      I did not realize that PA had grand mal seizures. You do know how I feel. Dr. C discussed the Kepra with us in conjunction with another med and the B6 but said he had more experience and success with the Depakene. The side effects are very, very scary. The seizures are scary. It is not easy to decide what choice to make but you and Karla are right. We have to make the decisions anyway and try to do our best. I’m glad PA is getting what she needs with the B6 now. Thank you for sharing your experience. ***Hugs*** back!

  4. Aspie Mom says:

    You can never go home.
    But the next step is not the last step. It’s just the next one.
    You will grow and learn. your docs will grow and learn. and the big pharmecos will grow.
    But your son will always be perfect and beautiful.
    And you will do more for him than any other mother could. Because you are the perfect mother for him.

    Hay un solo nino bello en el mundo y cada madre lo tiene. – Jose Marti
    There’s only one beautiful baby in the world and each mother has it.

  5. Kelly Hafer says:

    Hey Karen – this post is so right on. Everything from the internal debate of whether or not to medicate, waiting for the “insta” cure (oh, MAN, can I relate to this), to shouldering the weight of each decision and being the “knowledge keeper” and key researcher.

    I can relate to all of this. I wish I had some sage advice to offer.

    I don’t.

    Just know that you have a whole online “family” who understand and are going through similar things. We support you. We embrace you. We are here.

  6. ElizOF says:

    I know you’ve been sharing the journey to this news with us, but I’d like to go back to the medical staff and ask some questions… He hasn’t taken the meds for seizures before and I wonder about the side effects… and long term prognosis. Sending all of you virtual hugs.

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