Yesterday I cried at the gym, and not because I had the rockinest workout ever, although it was a good workout. I cried because of one woman’s simple kindness.
So let’s back up a bit.
Levi pulls hair. He has pulled hair since he learned his fingers could grasp and it has always been a thing. But as soon as he was strong enough to stand, and especially once he started walking, the hair pulling became a serious problem. When the Speech Therapist (S.T.) and Occupational Therapist (O.T.) would come to the house and sit on the floor to work with him, he’d run over and excitedly pull their hair. If anyone tried to hold Levi, he’d pull their hair and God forbid there was a little girl with long flowing hair at the play ground.
And when I say “pull their hair,” it’s not at all what you’re picturing (unless you’ve met Levi). It’s not cute or innocent or childish. He makes this face and tries to remove the hair from your scalp, yanking back and forth, tangling and breaking the prettiest of hair. Seriously, It HURTS! I’ll even warn people, “Oh I’m sorry, he’s trying to get close so he can pull your hair.” They say, “Oh that’s fine my daughter pulls my hair,” and even offer up their hair. Faster than lightening, he’s pulling and they look surprised, to say the least, at the violence of the experience.
Working with the AMAZING Kristin (O.T.) in Colorado we had gotten the hair pulling to a minimum but it still happened and whenever we’d go out, I’d keep a super close eye on Levi and often have to jump and pry his hands from a girl’s hair or snatch him away as he was reaching. He is remarkably fast when it comes to hair… really… really fast.
When we joined the YMCA in Colorado I mentioned that Levi had Down Syndrome to the staff. They told me I had to speak with the child care director. She told me that they could not afford to hire a staff person just to watch Levi so if he’s “too much” he can’t come. I was terrified for days that his hair pulling would mean we would be banned from the Y. Which echoes every Mother’s deep, deep secret fear that somehow YOUR child is the one they can’t handle. And of course, I worried about never being able to leave Levi with anyone but my Mom, who is one of the hardest working Real Estate Agents you’ll ever meet. And we all really needed this to work. I needed to work out, the boys both needed some peer interaction, and Levi had never been in a daycare type of situation before. Fortunately and VERY surprisingly, it did workout. They kept telling me, “Yeah, he was fine. He had fun! He did pull hair a little but we just gave him some food and sat him down and he stopped.”
Then we move to Seattle. The first month was just unpacking. But then I procrastinated signing up for the Y again. I really just didn’t want to go through the process again of hearing, “if we can’t handle your son, he can’t come”. Plus the hair pulling has gotten worse since we moved. We’ve taken the kids to some amazing places since we moved here, but if there is gorgeous flowing hair anywhere in Levi range, he is ON IT. “Closely watching him” has become “constantly hovering over him” (not exaggerating at all, literally back bent constant hovering) and to be honest, it’s not much fun… In fact it’s turned every outing into an anxiety riddled ready to pounce and apologize embarrassment fest… Even at the grocery store, he reaches out of the cart and pulls the hair of people walking by, or the cashier putting the bags in the cart. Over and over and over embarrassment and apologies. And I haven’t even started on the screeching…
We tried to find a new home church here and the one we tried, told us to “warn them if we planned on returning” so they could have extra staff members on hand to handle Levi, which just added to my mounting anxiety about signing up for the Y.
Yet eventually I did do it. I took the plunge. I signed up for the Y and dropped the boys off. Entering the child care was a MUCH simpler process here and I didn’t have to have a “chat” with anyone a head of time. But when I dropped him off, I warned them about the hair pulling. “He has Down Syndrome and he doesn’t speak very many words, although he understands most and uses some signs. Also part of the DS is that he has some sensory issues. He grasps things very very tightly and he pulls hair. Here’s his oral therapy tool. If you can get him to chew on it sometimes that stops it. Gently blowing in his face sometimes works. Here’s how you sign ‘no’ and ‘stop’.” etc. etc. I wasn’t expecting a miracle but I was praying for one.
The first time, all the tricks worked but I only left them there for 40 minutes. The second time, nothing worked. Levi will just not stop pulling hair. So they put him in the high chair with some toys, not for the whole time, but for a while. At least at the other Y, they were feeding him when he was in the high chair. This one has a “no food” policy so it’s just toys. I understand the staff has to do what they can so I try to be ok with it.
But I can’t bring myself to go back for a week. It nags at me. The image of Levi sitting there alone, while the other kids run and laugh, scream, imagine and learn. I convince myself it’s not good for Levi and that’s enough of a reason to not go. I feel like half of the reason to go is for the boys to run about and burn some energy. I feel like it’s better for Levi to stay home if he can run in circles at home but is unable to run at the Y. And I worry this is a glimpse of Levi’s future. Exclusion.
And I don’t know if I’m ready. I’ve read the blogs. I follow the groups. I know it is my new destiny to be always fighting for Levi’s full inclusion. But I just don’t know if I’m ready.
But I NEED to workout. The boys NEED to get out of the house and they both NEED some friends.
So we go again (after a dream where Snooki shamed me about not working out lol).
I’m on the elliptical warming up and trying to keep my heart rate at that low fat burn rate but I know my heart is racing, worrying about Levi and all those whose hair is being pulled. He pulled a staff person’s hair before I even left the room when I dropped him off. But I did my whole routine and took out some anger on that horrible crossfit ball (that I love to hate because it makes me feel awesome to even know how to use it). Then went to check on Levi. There he was, in the chair. But a little boy was standing there, talking to him and sharing some toys. So I decided for now, this would have to do, and went to do my cardio on the elliptical. After my cardio, I always rest before I pick up the boys because I worry my muscles will fatigue as I carry a 30lbs two year old, his diaper bag, water bottle, coats and possibly shoes, and drag a 37lbs three year old to the car. But before I rested, I checked on Levi. He was in the chair but a staff person was sitting at the table with him, chatting with him. Then she laughed and picked him up smiling! By the time I got back after resting, he was sitting on the floor, happily playing with toys and other children, surrounded by children and staff and all their flowing hair, and NOT PULLING ANY!
So the lady who came to check the boys out was the same person whose hair had been pulled before I even started my workout. She told me about how he was in “time out break” a few times but they were talking to him about pulling hair. Then one of the other staff held him for a while and eventually he stopped. Then she said, “You know, he’ll get better. And if there is anything we can do to help you, to help him as he learns, just let us know. Just tell us what we can do.” And I cried.
I’m always so afraid of being an “inconvenience.” I don’t know why but it is a huge fear of mine. But it is something I will be doing a lot as Levi gets older. Unfortunately full inclusion for children with disabilities is hardly ever “convenient”, although it is often beneficial for all parties involved.
But with those simple words, she made me feel like I wasn’t an inconvenience, I now had new partners in the many of us involved in raising and teaching Levi. What a blessing! Then she spent 5 minutes listening to me about all the work we’ve done and all the theories we’ve had and all the tricks we’ve tried. I now feel like for 90 minutes a day, I have a whole team that’s got my back so I can go do what needs to be done to be the best Mommy I can to my two rambunctious boys. And when you’re feeling a bit alone in a big new city, that is really, really an amazing feeling to have.
Edit: So it took me a few days to publish this since I originally wrote it. Since then, we’ve been back to the Y a few times and he hasn’t pulled hair there at all!