Ours has long been a daily life of lesser and greater degrees of upheaval. Transitions are always tricky. We handle them with as much courage as we can, but I can’t deny that it’s mostly with one eye closed while bracing ourselves for some sort of backlash.
Autism presents certain challenges that can be quite a pain in the ass. We’ve already established that point quite firmly so I’m not saying anything that will rattle your cages, my friends. We all know that there are things that, in the regular, run-of-the-mill household, would come across as incredibly zany and ludicrous, but that make absolute sense in our homes.
Take, for example, Birthday Candle Survivor. There was a time, in the now more distant past, when we would sing Happy Birthday in darkened rooms with all the candles in the cake lit, and -once the candles were blown- we’d remove one, light them again, sing Happy Birthday again, and so on and so forth until no candles were left. When we’ve told this story to those not anointed with First Hand Knowledge and Experience of Autism the reaction has been pretty much the same: why didn’t you just get those candles shaped like numbers. Sigh… You’d think the thought didn’t occur to us. You’d think we didn’t TRY this. Well, the thought did occur and the attempt was made, but THAT is not the way J’s mind works, thank you.
That we can now get candles shaped like numbers is, trust me, a huge relief. With people turning 20s and 50s left and right we’d be on the brink of passing out if we still had to do the Birthday Candle Survivor thing.
Last Friday I had a visit with my surgeon. This was tricky. J has been anxious about my absence, as I explained previously, and he is ALWAYS anxious about any interactions with the medical profession. I sat him down and explained that we were going to the hospital for me, and -for the first time in possibly seventeen years- I showed him my breast so he could see the incision that the doctor was evaluating. In spite of this, of course, J had to do something that doesn’t come very naturally: trust that I was being 100% honest with him about not being poked and prodded at the doctor. He was hesitant, but he conquered his fear, and -when my name was finally called- he stood up to follow me. The relief on his face when the nurse said “we only want to see your mother” was quite impressive. He didn’t exactly shove me in the door, but he did bounce back to sit next to Dada.
I wasn’t expecting it to go as well as it did. He tried to redirect us towards the grocery store (his escape from all medical situations,) and he did go to the restroom twice while we waited, but it was going pretty well for a while…until…
Have I mentioned that J hasn’t seen TGG more than once a month since TGG moved out? Yeah. TGG has not been visiting. He’s been here four times in as many months. J doesn’t ask about him anymore. It was sheer dumb luck that, as we sat in the waiting room, TGG arrived with his partner, bringing a patient to the clinic. We had not told him that we were going to be there. In fact, we had barely heard from him since June 8th, and he hadn’t really called for Father’s Day or after my surgery. Now, suddenly, there he was; he went up to the counter, spoke to the nurse, and didn’t see us until he was walking out. He waved. We waved. J raised his hand, and then dropped it. That was the end of it.
When I was done (good news, I’m dying at a normal rate, and my incision is healing nicely,) J asked to go home. When we got home, he took his evening plans off the PECS board. He put on his pajamas, and he retired to his TV room. No word about his brother. Nothing.
Transitions are hard. J has accepted that his brother is no longer a part of our household, but he had also accepted that his brother’s son was a fixture in our lives. The shared affinity for The Three Little Pigs and Piglet’s Big Movie, and the shared meals on Tuesday evenings were something he had come to enjoy. J loves his nephew, but he has had to learn to not put him up on the board.
Don’t worry: the kid is perfectly fine and happy and healthy with his mother. We simply do not see him anymore. It was a decision on his mom’s part, and we have to accept it. She doesn’t want to overcome TGG’s immature behavior, even when he has tried, and we got ensnared in a strategy that has backfired. We thought we were working together towards giving the kid as close to a family as was possible under the circumstances, but she never really meant to move past the part where TGG acted like an immature idiot.
When I was thirty-three my husband of ten-and-a-half years walked out of our marriage, and I was left with two small children (one of them disabled,) and I was pretty pissed off. I felt like I’d wasted a lifetime, like I had missed out on all sorts of opportunities, and like I had been betrayed, but -and maybe it’s because I was older than she is now- I chose to encourage a relationship between my ex-husband and his sons. Even after Dada and I got married, we made a point to encourage the children’s father to be there for them. His choices, of course, are his choices, and I cannot do more than I did to encourage him to be close to the boys.
The fact that this whole situation with my grandson’s mother blew up through a post on Facebook (why do people think it’s ok to air this crap out on social media?) doesn’t help matters. I told her I was disappointed. She blocked me. Oh, well…
You will be disappointed and angry with me, but I have to think of the two most important people in this scenario: the two year-old who cannot currently understand what is happening, and the twenty-one year-old who will never understand why this is happening. A kid shouldn’t be exposed to people who generate anxiety and anger in his mother. It sucks hugely, but I understand that she thinks -at this time- that she is right and she has found happiness with a new version of what she wants her son’s family to look like.
We are upset. We are crushed. We are sad. We are taking J’s best interests at heart. This has already happened once, and we cannot sit here and open J to it happening again. Every person that we introduce into our home is a chance we take. We transition people in and hope that J is comfortable with them; change is hard for him. Change is turmoil for him. Change changes him, and not always in a good way. Every bit of progress comes with a risk at backsliding, and if it’s stuff like bandaids, or tomatoes being evil and not allowed on his plate that’s one thing…
People are another. Seeing J react to TGG in such a way on Friday told me something very important: J doesn’t want to open himself up to more disappointment from his brother. We have to take into consideration that J has come a long way, but that regression is not an absurd scenario.
We are thinking of two kids here. One might someday forgive us for giving his mother the space she clearly wants, and the right to choose what she thinks is best for him. The other…well…