Austin Nantais Update (Wyandotte, MI)
We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Austin’s story, see his original story click here: Austin Nantais.
It’s day nine of weaning, we are now on 10 mgs, twice a day, and just two days away from another big change dropping it to 5 mgs, twice a day. The first week I thought this isn’t too bad but I’ve been waiting for the other shoe to drop. Not only did it drop, it fell hard.
Austin, at 21, went on the max dose when they needed participants to test the upper dosages of the med. We did fine on 10 mgs three times a day but agreed to go to 15 mgs three times a day. Most of the first week, on 10 mgs three times a day was without incident, even with the major change in our schedule with school ending. We had only one incident and it was easily managed and dissipated quickly.
Although little changes where noted in some of his verbal comments, he’d gone back to the days of making comments that he thought would push my buttons, comments that disappeared while on STX209. At one time he used to tell me I was fired, sometimes multiple times during a day, when I only replied “go ahead make my day” he moved on to different phrases After watching The Lion King far too often, the “kill” word was used. If you want to see strange reactions in public just observe bystanders faces when your son screams at you that he’s going to kill you. It bothers me much more now because I worry what would happen if he’s in a situation when I’m not there and someone hears it and takes it as a physical threat not recognizing that Austin has fragile X and autism. Will I always be there to keep him safe? What happens if there is a major meltdown in public and I’m not there, will brute force be used? If he was in a rage would anyone even recognize that he has a disability? I did chuckle a little when he used a phrase I don’t think I’ve heard during the past four years, “nice boobies” I have no idea where that came from but I diffuse it simply by saying “yes they are” or “not as nice as they used to be”.
Yesterday, on 10 mgs, twice a day, we had three major meltdowns. In the initial study results they claimed that there was not a significant improvement in irritability to meet the study’s endpoint, but that was never the case for Austin. Right from the start, the improvement was significant.
I feel as though there is a ticking time bomb in the house and I don’t have a visual of the timer. I don’t know when it will go off nor do I know what the trigger will be. Yesterday’s trigger was something very simple – dinner plans changed. Austin asked what was for dinner and I told him I was going to make Salmon. Well I walked a block to the fish market only to discover that they close at 5 pm on Thursdays when I came back home and said they were closed to put it simply all hell broke loose, first with me, than with dad.
I think back to July 2009, and the four years that followed, during that time one of the most remarkable things I remember when we first went on STX209 was that all of a sudden we were able to be spontaneous, a last minute change of plans was no big deal. It was so refreshing after fifteen years of always having to prep Austin with a schedule and to be prepared for meltdowns if things changed I must admit I took this new normal for granted. Now, after only one major event it looks like those days are over.
The meltdowns weren’t pretty, thankfully my husband was home and we were able to put him in his room to take a break. Not sure what I’ll do when it’s just me, more than likely instead of trying to remove Austin from the area I’ll just remove myself.
The meltdowns weren’t the most heartbreaking event of the day that came later during the calm after the storm. I went to Austin and asked him if he needed a hug and reminded him of calming techniques he needs to use when he is upset. He gave me the biggest bear hug and just sobbed in my arms, telling me over and over again he was sorry, asking me if I loved him, to which I simply replied with all my heart “I will always love you”.