Hold

I’m not going to kid you and say my life has been easy the passed few weeks.

Not so much. My husband was in Israel and then in Scotland and finally England when my Uncle passed away. I’ve never had someone from that generation of my family pass away, and I spent two weeks at my Uncles when I was fifteen. Just so I could know what it was like to see another side of my family. I was curious about these people who I didn’t know but whom I shared DNA with.

My grandmother was all for me going to Portland. What I got from her when I was out there was how much she and my grandfather pitted their boys against each other. What I got from my cousins was how much they didn’t know about their grandparents. I knew my grandparents bad points and their good points and they didn’t know them that well, not at least well enough to see the bad things. I was real with my grandparents. I didn’t shade my grandparents from the glow of my many misdeeds.

I let them see me for all my warts and blisters.

I was not a nice girl. I was not a good kid. My parents let me know this in no uncertain terms. I never could come up to the standards my mother set out for me. I resisted every bit of molding she attempted and all I got from my father was the distinct feeling that he would like me much better once I was no longer his responsibility. He made a statement to that affect when I got married to my husband.

He said, “She’s your problem now.”

He’ll never know how much that hurt me.

I know it was his attempt at humor but it hurt me non-the-less.

However, I felt a great loss with the passing of my Uncle. No matter how much he and I didn’t know about each other. He was a constant in the fact that he wasn’t here-constantly. However he was here intermittently. And now he is no longer here permanently. That permanence brings a feeling of sorrow to me and mine. Something we can’t transmit over words or feelings to anyone else that hasn’t felt it. However here it is and we must deal with this thing.

Booga attempted to hug me right after I was told that he was in a coma.

Hugs for Booga are not easy. This is a kid that if you go to touch him he jumps back like you have leprosy and it’s the Middle Ages; throws up his hands and jumps back.

It took a long time to make him understand that the world was not going to end if you hugged someone. I spent many times with him as a child trying to get him calm and nothing worked. NOTHING. He ran about like a mad man, slamming his head into the wall. He spent nights riding his spring horse because I couldn’t make him go to sleep. He needed something to make him calm. And there weren’t enough meds in the world to help him cope with this….

However, he loved water and I theorize that Autistic children love water because it holds them but doesn’t forcible touch them. There is nothing aggressive about the water, except maybe fierce fish. People can be aggressive. Touch can be aggressive, children’s touch sometimes are primal and aggressive.

But water isn’t aggressive. It’s just there.

Now, I come from a family where everyone…EVERYONE hugs. I mean you walk in the door, three people are there to hug you and give you a kiss and it’s expected that you reciprocate this affection. So you can imagine the complete and utter horror in my family when someone in their family didn’t want to be touched or kissed or hugged. And my family is a giant moving force to be reckoned with. There is always someone at my parent’s house and my parents don’t even have to be there. We know everything about everyone else’s business and we all know each others faults and misgivings and despite these things we proceed to love one another. (My mother would nod and agree with that.)

So imagine being an autistic child in this family where family is so important and where so many people want to love you….It’s like he looked at them and said to himself, “DON’T LET THEM LOVE YOU! YOU DON’T WANT THEM TO LOVE YOU!!! EEEEekeek!” It is somewhat a nightmare of chaos.

 (As a young autistic adult Booga spends a lot of time in the basement of my parent’s house in the family room; where no one is generally.)

This is what I had to deal with whenever I went there with Booga when he was this small, confused, autistic child and I didn’t know what I was going to do.

Then one day I saw a show on how forced hugging helped some Autistic kids learn to calm down, along with brushing and gentle touch…And I thought, “Wow we could do this thing.” Boog can tolerate some touch, clearly, because he loves water and it’s a form of touch…” (Or at least I told myself that).

Another thing was when Booga was small, we were so poor that we couldn’t afford the machinery or the specialist that people were calling us about or telling us we needed for this special kid- I mean I had people telling me I should give him this special diet and this special kind of wheat germ or some kind stuff like that –and when your okay financially this all well and good but we were barely making it on what little money both of us brought in. So, I did what I could and made good with what I had. And what I had was a bear grip.

This therapy called Holding Therapy consists of taking an autistic child and holding them tightly until they stop thrashing about and calm down. I did this with Booga. I held him in my arms as a small child in a bear grip until he stopped thrashing. I won’t lie and tell you this works the first time. And guess what? You can’t be a wuss. You can’t break down in weepy tears when your child hits you. You have to be strong and allow them to struggle against you…Come on and be big strong adults. This is a five year old. You have a hundred pounds on them.

It took a long time. A LONG TIME.

Until slowly he stopped struggling sooner and sooner; then one day, he hugged me back a little.

However it was not the kind of genuine hug you normally would get from someone. It was the kind of hug that you would get from someone who is pissed off at you, or doesn’t like that whole “touchy feely” thing, or is just not that warm a person-but who is trying to be for appearances. I call this his “fake hug” and I have to tell him when he gives me one of these fake hugs to give me “a real hug, not a fake one.” It’s kind of like his fake smile. It’s not his real genuine smile, but the one he gives when someone wants to take his picture.

He still does not like hugs. He doesn’t like to give them. But he will. In a moment of great joy, give you a hug of some fashion. It might not be what you thought you should get but it’s there.

Did it help him in every day life? I don’t know. Booga speaks. He holds conversations. He is high functioning. He is a lot more than the diagnosis I was given that he would never speak and probably have to be institutionalized. Which was so much Kanner crap. Yes I said Kanner crap. He reads and writes and loves to cook and is crazy about music and may be fabulous- We’re not sure-jury still out on that. But I do know that the tactile methods at school and some thing’s we did at home, made it easier for him to cope.

So how does this all relate to my Uncle dying….Well, the day I found out my Uncle was dying and was being taken off life support, I drove home from getting pizza and Booga reached over and like a typical man not wanting to actually hug you, he squeezed my shoulder, and then squeezed it again.

Then later on I got a hug of a fashion from Booga, who wasn’t quite at all sure what to do about this woman crying in his living room. Something had to be done; he just wasn’t sure what that thing was.

He tried to make me laugh and I did laugh to make him feel better about my feeling bad. I actually couldn’t find anything funny at that moment.

He was doing something that a lot of teenagers do when they are faced with the fact that their parents are not superhuman and do have emotions and cry and hurt and sometimes you’d just about do anything to fix it…He was trying to make it better for his mom. That’s very amazing to me. Because there was a time when he couldn’t have comprehended that something was not right with his mom or dad or brother or sister.

Sometimes we look at things and go, there is a reason this happened. A reason someone is the way they are, a reason for the rain and snow and for the change in seasons. There is a reason Booga ponders the meaning of sorrow and the look of loss. He knows he’s felt it but he hasn’t connected those feelings and the way they look on someone else’s face and what it means. He hasn’t figured out that he has those emotions and he can “look” that way. He’s seen death and knows its permanence; however he hasn’t figured out that this “look” and these emotions go hand in hand yet. He hasn’t figured that all out- but he knows that it needs to be comforted so it can go away and we can function normally.

And there are times…. I hope he never will.