living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

So here it is.   The one that I’ve been thinking about.  I’ve had a miserable couple of weeks, my brain keeps going over things, and I can’t stop thinking about it.   We have been having an issue with violence in Elijah, so you might see how I couldn’t just put out in the world that my son is suddenly resorting to violence, that he has been cruel both to our other kids (Micah excluded), and our animals, or that I couldn’t  just tell you that I was worried that we would never be invited to be social with another family, that he could never join and extra curricular program, that he may injure one of his sibling seriously,  or that one day he would be a sociopath, without giving you the full story.  I couldn’t risk even those who love us to make a judgment without knowing the road we’re on to improve it.

Elijah has Autism, and one of the main diagnostic criteria of ASD (Autism Spectrum Disorder),  is developmental delay.  While he may be at a 5 year level in some respects, he can be at a 2 year old level in others.  Think about a two year old…they hit, tantrum, and bite.  It’s normal at that age, in fact it can be considered an cognitive advancement they are starting to realize that the have their own desires, and that by acting out they can sometimes control, or manipulate a situation into his or her favor.  It’s also pretty easy to control a two year old, and they can’t really push around kids bigger than them, not so with our big for his age, strong for his frame 5 year old.

Elijah also has impulse control issues, he does things without thinking about consequences a lot.  So when we noticed he was hitting and biting often, when he was frustrated, we tried a myriad of responses.  From quiet correction, full out yelling, time outs, and at it’s climax, when he was tossing Petra around in the pig pen and hitting the pigs with a stick, he got a spanking.  Probably the least likely way to get Elijah to stop hitting when he felt frustrated, I’m sure you see it:  Parent gets so frustrated they hit son for getting so frustrated he hit daughter.  Spanking is a parent impulse control problem.

This was the incident that lead us to talk to a psychologist (a friend of mine), a doctor who wouldn’t give us a referral, a doctor who would, a friend with a son also on the spectrum, a compounding pharmacist who is incredibly knowledgeable about ASD and the variety of treatments there are, a program administrator, and Elijah’s occupational therapist.

You see we’re interested in seeing a biomedical specialist here in town, so our first step was to get a doctor to write us a referral, so we tell our story to the first guys and he says no, we tell our story to a second guy he says yes, we tell the pharmacist, so she can collaborate with the family doctor who said yes, but isn’t familiar with biomedical treatments for patients on the spectrum,we tell our story to the therapist to get his input on therapeutic sessions that will curb the behavior, we tell the story to two friends to get their input, we tell a program administrator the story to get him into The Alivin Buckwald Center (an Autism clinic) here in town, and Kyle and I spent most evenings talking about it and what we think our best options are.

The absolutely emotionally soul sucking problem with having to do all of this talking, is that we don’t get to talk about Elijah, we talk about the problem behavior, over and over and over.  Do you have any idea how how incredibly sad it made me to only talk about Elijah in the worst possible light for over a week, and then find out that we’re not likely to see the specialist for any type biomedical help for over a year, and that the behavioral help from the Alvin Buckwald center is likely a 7 or 8 month wait? Very, VERY, sad.

Our occupational therapist was of great help, and since we’re already with him he can start to implement some things right away, but we also spoke with him about starting another type of therapy called RDI (Relationship Development Intervention Program) which helps spectrum kids learn the skills for dynamic thinking and interacting, giving them the tools they need for friendship , teamwork, employability, and independent living. I think it would be a valuable tool, but I must read through the book about it, before we can commit to starting a program that requires intensive parent involvement from a mom who’s already worn thin on time.  God, finding time to read the book is hard (you may have noticed a few skipped blog posts this last week or two) let alone realistically adding one more ‘to do’ in my day, and tape it, and submit it for review.  And the book is not easy reading either it talks about specific brain functions, deficits, and the difference each cerebral area plays in static and dynamic thinking. Oh, and did I mention how much of the cost of this therapy is covered by the province? 0%, even though it would save the government thousands (millions?) in assisted living, and make work costs in the future.  So you know, it should totally be cheap. ugg.

I’m also about to start calling the specialist’s office and start throwing Kyle’s name around, and the fact that he works for the department of medicine at the University to see if that has any pull.  Basically I need to say, hey were already on the road with biomedical, and my husbands a smart guy who can read a medical review paper, so you wont have to start at square one with us.  I hate games like this I’d rather not play them, it should be equal opportunity for everyone, and the wait should never be a year, think about the possibility of treatment within a year vs. none!  And I hate being pushy, or worse shot down.

So there it is out in the world. Elijah can be mean, were working on it.  Thanks to divine mercy, things this week on the the Elijah behavior front is really good, it can almost feel as though I might have made it all up, but now that we’re moving forward (slowly) there’s no moving back, and no stalling.

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Comments on: "Gobsmacked at the effort of it all" (4)

  1. Huge enormous hugs to all of you. This sounds like quite the rough time for everyone and I hope that things fall into place and start happening for Elijah soon. He’s so very blessed to have parents who are working so so hard for him.

  2. Wow, what a lot for you all to deal with. I am sure it’s really hard to understand the behaviors and figure out how to respond effectively and appropriately. I don’t think a lot of people realize how much all of our behaviors, emotions & functions are tied to our body chemistry. Many people are lucky to have all cylinders firing appropriately, but many people suffer auto immune disorders, depression, you name it because their brains or bodies are either not absorbing nutrients correctly or are not producing the right levels of this or that.

    I only understand moderately, but when i was 18 my thyroid was removed because it was out of wack big time. As a result of my thyroid imbalance I experienced everything from bad vision, to inability to concentrate and even started to faint and get agri-phobia and panic attacks. Once I had my thyroid out and not started synthetic hormones, all of this has gone away. In the “olden” days people with overactive thyroids would often be put in mental institutions because there was no understanding of the problem, which ultimately is so simple. I think people who have never had imbalances don’t understand just how much these things are in control of you emotions, of everything.

    I think with Autism there is just a beginning of understanding what can cause these children and adults problems. You seem to have found some help with the gluten free and dietary restrictions, but in reading about biomedical treatments, perhaps they can help Elijah maybe fill in the blanks with nutrients, hormones, vitamins that he is missing. I am sure with the proper advice and information from the docs and specialists you can try and figure out what other drugs/vitamins he may need to help him.

    You are both such smart and caring people that I know you will be able to put some of the pieces of this puzzle together. I hope you don’t have to wait too longs as there would be ton of stress in not being able to move forward and start making some progress. If your like me, I get a sense of relief by feeling like i have a plan and have some sense of control.

    Good luck, let us know how the progress goes.

  3. It is a lot of work, research, blood, sweat, and urine…oh and tears! The good thing is you get the feeling of “we’re doing something”. You are actively trying your best to kick autism’s butt. You’re trying to help your child. Just pace yourself and remember that what works for one child may not work for him. Elijah is lucky to have parents who work so doggedly for him.

  4. […] pausing here, to remind you of this: Gobsmacked at the effort of it all.  Remember Elijah kicking our animals?  Remember me all worried that he was mean and just […]

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