It’s the Small Things in Life: Living With Special Needs Siblings
We hear it all the time. It’s the small things in life that are important. And it’s true. I feel this even more as the mom to special needs children. Yes, I feel it for them, but more often lately, I feel it for my typical children.
When Even Small Things are Impossible
We recently had a situation where Apollo was excited for days about a friend riding the bus home with him and playing at our house. It is early release all week and he was looking forward to an afternoon of play. This is a normal enough scenario. Something like this is so exciting to a third grader and his friend.
Unfortunately, the night before his brother had a huge escalation, destroying (by hand) our piano, attempting to break a window, trashing the house. Apollo was scared by the escalation (as any 8-year-old would be). After things had calmed down, we watched a movie together (Chuck, myself, and the kids) and had ice cream. We try (in vain, I’m sure) to “overwrite” the memories of the bad times with good times. In this case, with a movie and ice cream.
The next morning I awoke to the aftermath of my son’s rage. It’s difficult enough for our other children to live through these scenarios without robbing them of the small things like a friend coming home to play. So once Apollo was off to school, I rushed around the house. I obviously couldn’t move a broken piano out of my house by myself, but I picked up the thrown books and papers, hauled the broken pieces outdoors, vacuumed and cleaned the playroom so Apollo could have a fun afternoon with his friend.
The Small Things In Life My Typical Kids Miss Out On
My typical kids miss out on so many of the small things in life. And those many small things add up to big things. Add up, in fact, to the whole of their childhood experience.
My kids will only invite a small number of trusted friends over to the house.
They hate answering questions about the extreme damage to our house. And even more the follow-up question, “why don’t your parents just get it fixed ?”
They hate explaining to their friends why they have no doors on their bedrooms (because they have been broken, repeatedly).
Jubilee, in particular, hates answering curious questions about why her brother doesn’t attend school (I’ve told her just to say he’s homeschooling).
Other kids have had to ask to stay at a friend’s house, last minute when Chuck was working and I couldn’t leave in the middle of an escalation.
Yesterday I had to cancel Apollo’s student-led conference at, literally, the last minute because I couldn’t leave the house.
Most times Chuck and I have to take turns attending the kids’ events (band, games, etc) because of our son’s behaviors.
We no longer attend church as a family because we can’t.
Every evening, Monday-Friday is filled with ABA therapy either Chuck or myself needs to be present for.
Maintaining a Marriage with Special Needs Kids
If I’m honest, it’s hard not to resent Chuck sometimes, which really isn’t fair at all. He not only has to work so we can pay our bills, but he also has to work to afford the fancy health insurance that covers our son’s needs. (Don’t get me started on how the state has let us down.) But the reality is, Chuck isn’t always here when my son escalates. I am left making split-second decisions, on how to proceed, alone.
And then I feel guilty for feeling resentful, because imagine if I needed a job to financially support our children as well?
All I Ever Wanted Was the Small Things
All I ever wanted was to give my children a safe, secure, happy home. I want each one of my children to know they are valued and loved just for being them. I want them to know that they are an invaluable piece to this puzzle we call family.
We try out best to give the time and attention to our typical kids that they need and deserve, but the reality is, escalation trumps everything.
It’s no secret that some of my children struggle with anxiety and several are diagnosed with OCD. I have no doubt that the frequent escalations at home contribute to that. People tell me to be sure and take care of myself but I cannot.
I still have not met up with a friend I had plans with in April, and then again this summer, due to escalations both days. I planned to go to a knitting afternoon one mile from my house on Sunday, but couldn’t, due to an escalation in progress. Knitting with friends on a Sunday afternoon is a small thing, but nothing in our house is too big or small to be disrupted by an escalation. I have no doubt that I need a therapist, but my schedule literally does not allow for it.
So there you have it. The small things in life all add up to the big things and often we are simply left to pick up the pieces.