I write a lot about the difficulties of living with a twice exceptional child. It’s our life – our normal, and it’s not a fun or easy journey. It’s more like a war. A series of battles waged against the Engineer’s traitorous body. It never ends. He’s frustrated, anxious, stressed, and unhappy a lot of the time because he just can’t seem to make his body work the way he wants it to. For us, his parents, it’s heartbreaking to see him struggle. We work with him, provide consistency and boundaries, and help him learn to cope. It’s difficult to parent him, and it’s even more difficult to admit that we can’t fix his problems.
I have to admit, it’s not all horrible. There are moments of clarity, of peace for all of us.
This last week for me has been a slow realization that we’re doing better. The Engineer goes in cycles: months of improvement and then many months of struggles, battles, and down turns. This current cycle of improvement has lasted longer than others. Long enough for me to start hoping that we’ve reached a pivotal point. Maybe the road only goes up from now on – no more rollercoaster rides straight into the depressing cycle of anger/frustration/meltdowns/aggression.
It’s probably a false hope, and it’s an incredibly frustrating one because I can’t point to anything that caused this improvement. I have no idea what’s going on. It’s like trying to do a puzzle in the dark: you can’t even tell when you found the right piece because you can’t be certain that it fits correctly.
We adapted our parenting style yet again. We started ABA therapy. We went to several doctors. We spent more time at home and avoided certain trigger situations. We started scout troop. We transitioned from summer to fall. We started going to a new church with a special needs focus. He’s taking melatonin now and sleeping more. Any number of coincidental, tenuously connected causes might be the reason, or it might be an overwhelming amount of “right” things that we did for him.
I just don’t know.
And not knowing is the worst thing, because what if we inadvertently remove what’s helping him? What if it’s a cumulative effect that requires a multitude of options across different disciplines?
Tonight I’m putting those worries aside. I’ll deal with them later, and try to unravel the different threads and see what’s having the most effect. I’ll ask him why he thinks he’s doing better: sometimes he has a perspective that’s incredibly accurate for a 5 year-old.
For tonight, all that matters is that he gave me a bittersweet smile and said he loved me. True, he anxiously questioned if I was leaving the house, and his “I love you mommy” was in response to my reassurance that I would stay here. It’s enough knowing that my mere presence helps him battle his fears.
It doesn’t matter if ABA isn’t working (it’s not.) It doesn’t matter that the doctors can’t agree on any diagnosis but ADHD and SPD. It doesn’t even matter that I know sometime in the next few months we’ll probably revert to aggression and meltdowns every day. For now, I know that I can help my child. Just by being there, by sitting up with him at night when he’s scared to sleep because he might have bad dreams. Cuddling him when he’s crying because the fears are too overwhelming and huge.
It’s hard knowing that I can’t fix it for him. But, if I can’t fix it, at least I can walk this road with him and let him know that he’s not alone. He has us. We are his support, his rock, and his comfort.
I often wonder why him? Why does he have to deal with all of this? And why us? What did we do to deserve this situation? And then I kick myself for thinking that. Of course us. Who else could understand him and work with him the way we do? No one else is uniquely suited to help him like we are.
If we had followed the advice of countless doctors, family, and friends, he would be so much worse. Instead, we followed our heart. We followed our gut. We did what worked, not what the parenting books said.
I think that is why we’re seeing improvement.
I hope I’m right.
(why this image? because he happily pretend played with his siblings and new friends and shared the truck. a victory!)
*Hugs* you are not alone on your journey. You sharing your struggles make me feel less so too. We just had an extremely stressful play date at our house, where I felt like I was constantly making sure Squishy wasn’t hurting the kids we invited over. As our friends were leaving several of the mom’s remarked on how much he has improved over the year. The last time I had dared have everyone over was the first of spring. I was so busy “managing” his environment that I hadn’t even noticed.
I’m glad I can help! This truly is a lonely journey, isn’t it? And I’m totally with you – play dates and field trips can be the most stressful things. I would rather stay home! (but we don’t, of course…just wishing here lol!)