Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, February 29, 2008

With the best intentions

Sometimes, when you're a parent, you're forced to make decisions you don't want to make. They're decisions nobody warned you about when you decided to become a parent. As many parents of children who have disabilities will tell you, we're thrown into this position far more, and with more serious implications, than the average parent.

Let's see...what decisions have I had to make? How about when your child needs a life saving surgery, but its considered "elective", which means you have to CHOOSE if it's the best choice for your child, but the POTENTIAL side effects of the procedure could be worse than the reason for the surgery in the first place. Yet not having it would be risking your child's life. Yeah...been there a couple of times.

Making decisions about your child's education is another area. This may seem very simple to some. Most people just send their child to school every day, attend a conference or two each year, read their child's report card. They might even talk to the teacher a couple of times on the phone. I know parents who don't even know the name of their child's teacher! Most never have reason to talk to the building principal, much less anyone higher up in the ranks. Yeah...there are many days when I think "Ingnorance is bliss" is the place I'd rather be.

No, when you have a child who has significant learning issues (and in our case, significant behavioral issues) you don't get to sail through the school years. In the upcoming weeks I have Angela's 3rd or 4th IEP meeting of the year (most parents of kids in special ed. only need to attend 2...we'll have another before school gets out.) I know just about every specialist in her building because I HAVE to, and because they attend all these meetings as well. I speak with Angela's teacher several times per week, and if I go a few days without talking to her we wonder what's wrong! As a parent you have to decide where is the best place for your child. Your neighborhood school is very possibly not the place. You might not even be able to send your child to school within their district, but to send them elsewhere. You put your child who cannot defend themselves, or speak up for themselves, on a bus with strangers and hope that they'll be ok. You entrust them to people who are supposed to be the "experts" but keep having to remind yourself when it comes to your own child, YOU are the real expert. Every day will bring a challenge you hadn't anticipated, and sometimes you'll go to bed at night wondering how you'll get through tomorrow.

Even our trip was by no means easy. There are a lot of times we had to make a hasty retreat from some activity because Angela was starting to get too aggressive. Or the time at at Sea World, while watching the baby dolphin tank, when Angela grabbed the hair of a little girl who was unfortunate enough to be within arms reach.

But with all the decisions I've had to make on Angela's behalf, some of the worst have been related to her medical issues. Right now it's in the form of choosing what/how much/when/why we would want to use medication to get a handle on the behavioral issues. Angela has been on behavioral meds in one combination or another since she was about 5 years old. Some with great success, and others...not so much. But for some reason, for kids with Down Syndrome, even the successes with meds don't last very long before you're scrambling for a new combination.

Our longest success started in July of '06. That little magic pill(s) had Angela go from being a child I could take in public, to her happy, energetic, funny self again. She was truly a joy to be around and take everywhere. I had the pleasure of talking with one of the Guru's in the field of neuro-behavioral disorders in people with DS who confirmed what I already knew....that this success would be short-lived.

It lasted a long time for Angela, well over a year, before things started to go downhill. I started discussing a medication change with her doctors back in October, but then things kind of settled down so I decided to hold off. Well, we can't hold off any longer, so have started the slow process of adding a new drug, then eliminating the old. This isn't something you can do overnight. Instead it takes weeks to allow blood levels to slowly increase or decrease, depending upon the change that you're trying to make. Increase too fast, and you can cause serious liver or kidney damage. Decrease too fast and you can cause serious withdrawals.

What I hate most though, is the fact that I'm pumping my kid full of drugs. One morning last week I cried as I got Angela's morning meds ready. There were EIGHT pills! Some of her meds are not behavior related, like the prevacid she takes for reflux disease, colace to keep her "going", and a vitamin supplement. As I placed her pile of pills in front of her I had to wonder, "Do I even KNOW the REAL Angela anymore?" I know she was without meds for several weeks in the spring of '06 say it was "difficult" is an understatement, which is partly why our "miracle drug" seemed to have such a dramatic effect.

Yesterday I cried on the phone to the pediatrician. I hate this. I really really HATE it! How can I keep doing this to my kid? She reminded me that the drug on it's way out is a low dose, and it won't take long to get her off it, and we have a long way to go on the new drug before it's at maintenance level, but I don't feel any better about it.

I just want a happy kid. Right now, Angela is NOT happy! She's spending more and more time in isolation at school because having her with out kids is just not safe much of the time. She's also spending more and more time in her own world doing self-stimming behavior, which I know is drug induced, and makes me want to take her off EVERYTHING. An interesting observation though...I find myself in this same med-change situation at the same time every year. It's definitely cyclical, which makes me wonder about all kinds of other things.

I've heard from lots of parents who's kids with DS are now adults, and they tell me this was the worst age BY FAR! That by high school things settled down quite a bit. I'm hanging onto those thoughts with every ounce of my being.


Lea said...

Hi! I found your blog. I feel for you. My son has Asperger's Autism. We have been through the med route. I took my son off all meds and me and the teachers accommodate and tolerate whatever may occur. His problems aren't that severe as long as no one invades his space or teases him. I work for a Psychologist and see so many parents unsure of what to do for their children. You have to go with your heart and do what you truly think is best for her.

Laurie said...

oh, I can feel your anguish. Reading your post brought back memories of going to bed in tears, wondering what I was doing to my child..... and wondering who the real Nevin was. We did combinations of behavior meds for 7 years. I don't miss always wondering if it was breakthough behavior we were seeing or side effects from the meds that we were seeing.
I will keep you and Angela in prayers.