Michael Alcala (San Antonio, TX)
by Laura Alcala
I have hesitated to share our story because it has not been the regression, hitting, heartbreaking outcome others have had. That said, my Michael, 14 was never an aggressive child. That trait I DO see in little bro Max, 12 (who sadly did not quality for STX209, due to no social anxiety–not enough to qualify for the study anyway). Back to Michael, his fragile X manifested in inability to go places or wanting to go but then having such anxiety he could not get out of the car or he would start with vomiting. He used to use his finger and subsequently learned to vomit on “que” when I said we had to leave the house. He always went happily to school. I once saw my little niece (who is Michaels age and typically developing) do the vomiting thing, I saw how her parents reacted and “a lightbulb in me went off” and I used their technique and eventually the vomiting stopped. I know you are all dying to know what they did!!!!! Well, the next time we had to go somewhere and M vomited, I got him a little trash can to do it in, let him do his thing, and then asked are you finished and OFF we went!!!!!!!!! The first time I did it I think we were both shocked (because he used it as a means of control)! Eventually, the vomiting stopped and now very rarely he will decide he does not want to go somewhere and will start with the hacking, now i just say “spit it out” and he repeats “spit it out?”. I had to learn to let him get it out and the continue, NOT let it out and let it stop us from moving forward.
Michael’s last dose was Thursday 6/20. Is it wrong that I let him go to Grand Prairie (four hours away) with my parents to spend ELEVEN days (11 of last 13 days titrating off the meds)?? I am lucky my parents take him. This summer weeks with grandpa and grandma started about 3 years ago, because little bro Max was just too much and we ALL felt Michael needed some one-on-one time. My parents and extended family reported Michael was a joy. He likes to set himself up in the living room even though they have extra bedrooms. And he knows when company comes over he has to move all his stuff to the bedroom. He goes everywhere with my father and when my dad gets his stuff ready for shower, Michael gets ready for shower. He went shopping with my sister. He went to eat dinner at my brothers house. He spent the night at my sisters house. I am told he even straightened out his cousins room. He went to a swim party that the Dallas FX chapter hosted. AND he went to church and followed along!!!!!!!!!!! I asked my mom, how did you manage that?? She said they just told him time for church. Now, Michael loves to please and I have learned to utilize FIRST/THEN. But now, I would like to take it a step further and help him understand, you will not be instantly rewarded for everything you do!!! We go to work and most people have to wait two weeks for payday, so now he knows, Michael, Max and Moms day out is Friday or Saturdays for books, DVD’s, out to eat. Once upon at time this kid wanted a DVD every time we went to the store.
I just have to wonder if all our hard work raising him is finally paying off or did our time with the medication make SUCH an IMPACT and helped him see what he is capable of and continues to be capable of!!!!!!!!!!