The Star (or the Spectacle) of the Show?!
We are all too familiar with the occasional dilemma we face when invited to attend a family Simcha.
For families with typical children the focus is around scheduling, deciding which children are too young to attend, arranging babysitters or friends who we could leave ur little ones with until late at night, while outfitting the older ones in honor of the occasion which likely entails getting their hair done, renting gowns, etc.
We are also expected to show up early for pictures and of course stay until the end of the night amidst all the other various preparations we have as part of the extended family.
But when it comes to deciding whether to bring along our child with special needs, the Simcha takes on a whole new meaning. Careful consideration comes into play when having to decide if the special child even has the capacity to understand where he is, if he will gain from attending and how much of an impact he might make at the Simcha itself.
Some situations are a no-brainer, as bringing along a very disabled child might not be worth the incredible investment of time and emotional strength it takes to care for him during such an event.
It’s sometimes difficult to ascertain if he is even ‘wanted’ by the family making the Simcha or if they truly do wish for him to attend.
To get a sense of what the actual Baal Simcha would prefer, it might be wise to send our ‘feelers’ to see what their preference is; ultimately, it is their simcha and we are only
invited extended family.
It is important not to feel slighted or insulted by their response. After all, you asked.
Most of our children with Down syndrome are high functioning enough to realize they are invited to a family Simcha and come what may – They are going!!!
The core issue I struggle with is how to balance allowing the person with Down syndrome to fully enjoy himself at the Simcha, while displaying appropriate behavior during the Simcha itself?
As someone who is a hawk on my son’s public behavior, I, along with my husband become anxious and stressed by these events. We call these nights a ‘working night’- as we both are on call to keep a vigilant eye on things.
My son, Yehuda, is beloved by so many people and most have no issue with him taking center stage during the dancing. I, on the other hand, have to be vigilant to make sure he isn’t impinging on their space, time and attention.
He doesn’t belong center stage at the badekken, or dancing together with Roshei Yeshiva who came specifically to be m’sameach with the Chosson.
Numerous people have told us, “It’s okay; let him enjoy himself. We don’t mind. He’s happy; leave him alone. He isn’t ruining things for us. We want him here; he adds to the Simcha. Don’t pull him away from the dancing. Relax.”
But I feel otherwise.
I feel it’s not responsible for him to let loose with no boundaries or restrictions.
I guess it might be part of ‘The Syndrome’ that when the children hear the lively music they become so excited, it envelopes them, taking them into a higher realm of Simcha.
They are truly experiencing something so pure and elevated, they get carried away. Either my son doesn’t know his boundaries or doesn’t really want to know them.
All he knows is that his role is to be part of the crowd, and wants to show that his simcha is eternally entwined with theirs.
I guess that is something I need to learn from his beautiful and sincere nature.
May we all continue to share in Simchos.