I have spent the last few weeks navigating the behavioral equivalent of a mine field, never knowing if the next move I make will start D’s ‘rumbling’, which is the pre cursor to the complete meltdowns he has been experiencing too many times a day to count.
We are three weeks in to a med change and holy shit has it been a nightmare. When D started the Risperdal I was concerned about weight gain, but thought to give it a try because things with his behavior had become nearly unmanageable. It worked, but D was eating non-stop. I tried to power through it by giving him low-fat and healthy snacks but after a ten pound weight gain in two months I asked our neuro to switch it. We also took D off of the Tenex as we couldn’t increase the dose because it made him too emotional (see random frequent bouts of crying) and the dose he was on was barley helping his focus. We titrated the Risperdal and Tenex down and then the new med, Abilify, up slowly.
So it has been a long 3-4 weeks, I wrote that already..didn’t I?
The past few weeks have left my poor brain addled and my body using whatever quiet time it has to sleep and rest. Aside from the mindless Tumblr browsing and posting, not much has been happening that requires too much thought. The daily problem solving has taken some if not all available brain power. Any autism parent reading this knows what I mean about the problem solving or ‘redirecting’ as the therapists like to call it. It is an exhausting feat when your child is having an autism low on the roller coaster ride. Although I did manage to force myself out for the 4th of July and had a good time.
There is a silver lining in that this past week D’s tantrums have decreased a bit and the behavioral interventionist came in. She is very nice, but I swear that if one more of them asks me why D is getting ABA now, I might bite her/his head off. I get it, he is 6 and should have started years ago. Ask the bastards at The Regional Center why it took so damn long. I promise that if I had the money and could have paid out of pocket for it, that it would have been done 18 months ago when I knew Diego had autism.
Sorry, I am sure they are just doing their jobs…but it is frustrating.
On another note, I had almost made it past the “what did I do to cause D’s autism?” stage and then this hit:
I took Zoloft from week 11 until I gave birth to Diego. When I asked about the safety of taking this med while pregnant, I was told that in the many years it has been used that no adverse reaction to the baby was documented. I was told that the unborn children of depressed mothers had low birth weight and other complications.
With my history of pre-term delivery I figured I should take the Zoloft since it seemed that “the benefit outweighed the risk.”
In my second trimester the doctor increased the dose.
I had recently been diagnosed with SVT and put on modified bed-rest, then at 24 weeks strict bed-rest for pre-term labor.
Strict bed-rest consisted of going from my bed to the couch, if I didn’t do this they threatened to keep me in the hospital for the rest of my pregnancy. Anyone who has been in the hospital for more than a week knows that would be hell on earth. So the Zoloft seemed like a god send. It erased most of my crying spells caused by being confined to my home 24/7 , relieved some of my anxiety about the possibility of an early delivery, and eased my stress about the disastrous relationship I was in.
Now reading that article I feel selfish.
I feel like I should have just powered through those things, as least while I was pregnant, without taking the Zoloft.
Then pop all the pills I needed to after he was born.
Maybe if I did it that way, Diego wouldn’t have autism.
Maybe if I had done it that way he wouldn’t have to struggle everyday like he does now. Here lately screaming in frustration “I can’t take this anymore” or “Why won’t my brain listen to me!”
For the past four weeks I have been at a loss on how to help him. All I can offer when he screams like that is a hug and and “it’s gonna be ok”.
But will it? 😦
My heart breaks for him.
So whether or not the study is as concrete as I would like it to be, it only takes a little science to rattle me….apparently.
Like an old familiar enemy, Guilt creeps up again.
I kinda don’t need that right now…