A Gathering of Villagers

October 12, 2022

It takes a village to raise a child. When your kiddo has special needs - it takes a special village. You think you get to choose the village; but in truth, over time the villagers choose you. You start with the ones closest to him. That’s the family. Mom and Dad - the sisters. But even then, you have to sit and wait and see what, if any role, they want to take in his life. You can force it if you want too (some have too) but forcing it creates resentment. That underlying current of you guys wanted that next baby not us - why should we be saddled with him. I have read about this, but am so very Blessed to not have this in my son’s life. 

I have watched the relationships between Bradley and his sisters evolve over the years and while tiny - there was the typical jealousy and adoration… now there is the adoration and occasional irritation because it turns out he’s like most brothers and can be quite the little brat with them. He will push them as any good little brother will push, and love them unconditionally as most brothers never learn. With Bradley you take the good and the bad - but truly, it’s mostly good. 

Bradley’s adoration of his dad is well-deserved. He absolutely knows he is safe and loved with Dad, and if Mom says No to something, if he can move fast enough - he can get Dad to say yes before Mom can get there. He’s crafty and quick when he wants to be. Manipulating and playing one parent against another, or against a sister (he has then wrapped pretty tight around that finger too), yes. Frustrating, I guess sometimes, but witnessing the Blessing of a typical little boy trying to get what he wants - easy enough to overlook. Conversations about what they should or should not let him do happen, but it’s not a huge deal in the moment - a big one sometimes - but adapt and overcome while appreciating the work his mind went through to get there. But most the time, there is a gentleness with him while the girls are looking at me, asking with their eyes if they can say yes - and if I am shaking my head No, there is quiet redirect and loving snuggles when they say they can’t. Makes mom feel slightly like a bully and the fun police - but sometimes we have to say No too, to get his compliance for the tougher issues - like actually leaving the house so quickly after getting home from school. 

Is Dad a pushover? About as much as mom is, although he is the one more likely to buy every Curious George movie or Peppa episode that Bradley asks for on his iPad. But then, as Dad says “we aren’t exactly paying out for baseball or volleyball now are we?” So impossible to argue that. I probably would buy them too - but I might be the only one in the family who doesn’t have a bank card number memorized… and I will say those of you that do… that simultaneously impresses the Hell out of me and worries me just a bit! Just saying it out loud. 

Next, he has his teachers. But they have to be there. Someone has to be his teacher. We are grateful for who we have, they don’t have to care about him as much as the one he has seems to do, but she really does seem to see him and care about him.  So we are thrilled with that. 

Sadly, he doesn’t seem to have friends in his village. He has classmates at school and at least one beautiful peer tutor that he loves and who seems to love him back, but I’m not seeing a true buddy connection. Of course, with some of the drama I’ve seen with the girls and their friends over the years - not sure this is a bad thing. All the same, at therapy today, he walked in and a peer was excited and said “it’s Bradley.” And as much as I wanted to cheer, Bradley glanced at this boy that said his name, saw another boy in the waiting room and went and sat in this small little cubby area by the door. Like he was hiding. I tried to play it off, but it breaks something inside of you when you see him shut down any chance at sparking a connection with someone little like him. 

And here is another layer of his village. His therapists. While he hid in this corner, his OT and I talk about some of his new meds, some of what he might be feeling today… how his whole pre-therapy routine was thrown to bits today because even here in sunny SoCal, we CAN get weather. We usually don’t, but today there was a lightning strike on campus, so the school sheltered in place until it cleared and then they could continue home. Was that his issue? I don’t know. I try to speak his language and try to know him inside and out - but some days, feels like most days actually, even I am left in the dark with what he needs, wants or is feeling. So they brought out one of his favorite therapists who might know him best amongst them all as she was his ABA for awhile. And between her interaction and me asking him for hugs, he got up and came near me so I could hug him, give him a kiss and tell him I loved him. I asked if he was okay, he is non-committal, but willingly walked back for potty and then OT. No fighting, just not willing. Strange indeed. 

I’m not sure how it is going now, but they haven’t called me yet - so I am thinking he must be settling in as he does prefer his routines. And quiet patience. The best thing for Bradley is always that. When he is quiet as well, that is disconcerting as his behaviors are usually loud and combative. This wee boy with his sad little face is a bit tougher to soldier through. Hopefully, he returns to me having dipped into their magic and feels so much better than when he got here. One can only hope! 

OT was exceptionally quiet, but Speech and Feeding at least went exceptionally well. When I got him back, he had a smile and was a happier little boy. Maybe he was just excited that I let him have his speech iPad to see his pictures, sometimes that’s all he needs. 

31For21 Blog Challenge for Down Syndrome Awareness and Acceptance - villages create the bridges.