Friday, June 6, 2014

To Medicate or Not?

First let me say this picture has nothing to do with my post, but hey we finally had warm enough weather to pull the pool out, not only that but our neighbor had her siblings here yesterday, all homeschooled too. Selena was beyond excited to have a yard full of children, a warm sunny day, and an afternoon of pure joy.

When we began this journey working through the diagnosis of Autism, medication of course came up as an open discussion. We had been directed to different resources, and detailed diets designed to treat or help with the affects of Autism. I think our psychiatrist summed it up best for us though, when he asked what her meltdowns look like. It became pretty obvious as we worked through that to realize we needed to do more then the diet and therapies.

For those who are not familiar with an Autism meltdown, let me give you a quick description of what one can look like. They tend to come on when the child is facing a bump in their normal routine, something changes, they have to face something new, or they don't get things their way or within their timing. Their world turns upside down, now keep in mind one of the most common trait of Autism is the need for a very strict routine, very rigid about everything. Suddenly things become overwhelming for the child, they just can't communicate how they feel. At this point they will do one of two things, go into flight mode, (an attempt to run from the situation that is bothering them) or total collapse on the ground kicking, screaming, hitting, biting, throwing objects, with no regard for their own safety nor the safety of anyone near by. These meltdowns do not always happen at home, they can happen anywhere, a parking lot, in the middle of a store, church, school, just about anyplace the child might be. If you can imagine trying to stop your screaming child in a busy parking lot who for one reason or another didn't want to be touched, and you accidentally brushed her shoulder. It is no fun, and you as a parent are at your wits end, on how to prevent them from running out in front of cars, or tripping another customer up when she is laying on the ground thrashing every part of her body, screaming the entire time.

I think as you can imagine it didn't take us long before we had to take the mindset, that we were not medicating her for our sanity, but for her own safety. I know I hear many comments from those unfamiliar with these special kids that parents only medicate their children to be able to control them, all they need is better parenting skills. Boy what a sweeter world we would live in if that truly was the case. What they miss is what is the child going through, how are the affects of Autism affecting them, the one who lives with it? We watched Selena go without sleep, worrying about the unknown, her obsessive thoughts running her day, and preventing her from having any fun or enjoying the simple things because she couldn't calm down enough. Yes, we got tired of being on edge ourselves, wondering when she would flee or fight. We were becoming prisoners of Autism itself, worried about taking her to a store knowing all it would take to set her off was for something to be out of place on the shelf.

We tried a few medications before finding one that worked for her. It does come with side affects, but none that we can't live with at this point. She does have an increased appetite and since this medication is known for putting weight on we do watch her diet more. It does make her a little tired, and it isn't uncommon for her to take a 15 to 30 minute nap in the afternoon. At first we had to watch her closely for temperature changes, such as playing in the sun, or the temperature of her bath water, but this last one has seemed to resolve itself. Of course we had to find the right dose, this is where we appreciate our psychiatrist, instead of starting her on an amount that the books say is normal, he started her on such a small dose, then allowed us to add more as we felt needed. I believe we have finally found the dose, that is right for now, she seems to be able to hit a bump in her day, have a slight reaction, but be able to pull herself back on track for the rest of the day.

Other comments we have heard, is that now she should be able to do the things she couldn't do before the medications. This is a huge myth and so not true, she might be able to handle the situations a little bit better, but this medication and no medication is a cure all. If it upset them before starting medication, it will still upset them on the medication, but they should be able to meet these situations in a calmer state and not end up in total meltdown mode.

We know that Selena is happier being on the medication, she comments all the time how calm she now feels, and how much easier it is to do the things she couldn't do before. She still has her quirks, and list of things she doesn't like, but she at least tries. She still will do therapy with a psychologist to learn things that she lacks, such as boundaries, coping skills, and communication skills just to list a few.

I feel to medicate or to not medicate is something that any parent has to work through themselves, with the help of Doctors, and psychologists. They have to find the fit for their child and family. Most families dealing with Autism has no problem answering questions, and helping you understand what it is like, but they truly do not need to feel like everyone is criticizing them for a decision they have made for the safety of their child.

On a side note, I have not been a great blogger this past year. I am trying to get myself back online, back on the computer, and back around to all my favorite blogs. I have been very busy this past year, between appointments 2 to 3 times a week, and keeping up with everything here at home that something had to give. I look forward to moving forward with my blog and getting back with my bloggy friends, who believe me I have truly missed. 
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  1. I know all about what you are going through. We are constantly trying and adjusting medications for our Alex, who as a large, muscular 19-year old, is a must. At times he is uncontrollable. We are now at the point with our James that he is unable to navigate the world successfully, so we will have to go that route for him as well. I know what you mean about multiple appointments. Sometimes it is hard for us to fit in school because of them. Hugs. S. is so lucky to have you.

  2. We've missed you too.

    This is a clarifying trying to understand question, not a judging question, but will the medication and various therapies allow her to do some of the things and situations she was not able to eventually? I know a friend whose son was autistic with different therapies and as he got older and better able to cope with things was able to do more and became more comfortable with things, but that may have been his specific case.