Ayden AbouElSeoud Update (Holt, 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 Ayden’s story, see his original story click here: Ayden AbouElSeoud.

by Cortney AbouElSeoud

I sit amid a bustling crowd watching my firstborn.  There is music over the loudspeakers and a few hundred people conversing amongst themselves.  We are under a veranda, dressed up, waiting.  Strangers approach speaking to me and to my son saying “Great job!”, “He did so well!”, “Your children are so well behaved!” to which I smile, gratefully accepting their accolades.  I, too, am proud.   I lean over and explain very quietly what will be happening next.  His aunts, uncles, and daddy will be arriving and everyone will clap for them.  It will be loud.  I remind him to cover his ears if it is too much for him.  He asks for the iPad and I oblige.  Within minutes, the crowd is cheering as the bridal party approaches – it is time for the bride and groom to enter the reception.  As each of the wedding party is announced the crowd cheers, hoots, hollers, and claps.  I carefully watch Ayden for signs of distress, I find none.  Instead he has put aside the iPad to clap and cheer along with everyone else.  My heart is so completely full at this moment; I try to soak up every second so I will never forget it.

Immediately preceding this event, Ayden had done something that not long ago I wasn’t sure was possible.  He was a ring bearer for his aunt’s wedding and had successfully walked down the aisle in an unknown place without hesitation.  After standing with the bridal party for a few minutes, he proceeded to come sit next to me for the remainder of the ceremony – quietly I may add.   For a child who already has sensitivity to noise as well as anxiety over the unknown, this entire process was a huge accomplishment for him.  To say I am proud does not begin to cover my feelings.

As we put him and his siblings to sleep that evening, I have the strongest mixed emotions.  I cannot look at his accomplishments without considering how much STX209 has made this possible.  It allows him to overcome anxiety and participate in situations that while (usually) possible, would be much more difficult for all of us. I realize all this, and know that in the morning this may all change.  Tomorrow will be our first day of lowering his STX209 dose; the first step in removing him from the medication altogether.

And then it comes, this day I’ve been dreading for what seems like ages.  We were all a bit exhausted after the events from the wedding, so we did our best to make the day very relaxed.  We ate his favorite things for breakfast and then took a swim in the pool.  Not only does he love swimming, but it is also great for sensory input.  I was hoping to alleviate any anxiety for the upcoming day as a result of the previous day festivities and lowered dosage.  It wasn’t too far into the day when it happened.  I wish I could say what the trigger was, what pushed him over the top.  I just don’t know.  I imagine the previous day, plus getting ready to leave, a noisy room, and a lowered dose of medication all contributed to the epic meltdown that occurred just minutes before we were to leave. I attempted to calm him in all the normal ways, but none were working.  I saw his face getting worse.  I saw his ears turn red.  I saw him clawing at himself and chewing on whatever he could.  I saw the tears flowing and the desperate attempt to flee into the safety of mom’s arms.  And at that moment, every piece of my heart that has been carefully placed back together over the previous months of successes broke again into a million more. I once again found myself unable to help. It is the first time since beginning STX209 that we have had to physically remove ourselves from a situation to restore calm.

We did make it through the day, but it was not without incident.  We had more meltdowns, but they were small.  We had a bathroom accident.  A spilled drink.  Each was nothing major, but enough to start sending him over the edge again.  I; however, was on high alert from that point forward so I was able to react much more quickly.  We made it through bath and bedtime, although falling asleep was much more difficult and there were a few incidents of night waking.    He awoke this morning (day 2) already close to breaking point.  Today is his last full day of kindergarten.  I sent him to school with a lot of hugs, but my heart is aching.  I am holding hope that this is a release for him after this weekend and not just the lowered dose, that it won’t be this bad going forward.  I’m holding on because hope is all I have right now.