Monday, May 24, 2010
Wednesday, May 19, 2010
Two new things the last few days:
He told me "I can get a haircut. It doesn't hurt any more." The past um, four years (since he was old enough to need a haircut) it's been an awful experience. I have had to do them for a while now so that the stylist would not get kicked. And suddenly... they don't bother him anymore. He allowed me to cut his hair with just a few small flinches as I cut around his ears. Amazing. Really, really, really amazing for Riley. I asked him if he wanted to go to Supercuts next time (where his brother goes) and he said "Yes!" This is the second thing he's doing this week. Answering questions with "Yes." We have been trying to get him to do it for a long time, and he just wouldn't. Today alone he answered probably five questions with "Yes."
HUGE progress!
He told me "I can get a haircut. It doesn't hurt any more." The past um, four years (since he was old enough to need a haircut) it's been an awful experience. I have had to do them for a while now so that the stylist would not get kicked. And suddenly... they don't bother him anymore. He allowed me to cut his hair with just a few small flinches as I cut around his ears. Amazing. Really, really, really amazing for Riley. I asked him if he wanted to go to Supercuts next time (where his brother goes) and he said "Yes!" This is the second thing he's doing this week. Answering questions with "Yes." We have been trying to get him to do it for a long time, and he just wouldn't. Today alone he answered probably five questions with "Yes."
HUGE progress!
Saturday, May 15, 2010
Climbing to the summit
Last night, Chad and I watched the movie "The Horse Boy" on PBS. It is a story about a family who has a son with autism. They travel to Mongolia to visit with shamans in an effort to help heal him. In addition to that, they are doing these visits surrounded by horses. The one thing that seems to connect their son to "our world."
Though some of the messages in the movie are somewhat annoying (I didn't catch the names of some of the folks who were interviewed, but one was quite obviously part of the neurodiversity movement) it was thought provoking. It also really spoke to the journey each family takes in trying to help their child. For some of us, it's fighting a system and working to get our child therapy, schooling, medical help... whatever our child needs. We all have our own trip to Mongolia.
In part of the film, they are going to see one of the most powerful shamanic healers in the area. In order to get there, they have to climb higher and higher into the mountains, for days. They are on horseback the entire time. I'm sure the two minutes of the film devoted to this was actually a very exhausting journey for those who did it. Once they finally get to the top, they have to wait a day for the shaman to decide if he will even see them. When he does, Rowan (their son) is ready and willing to allow this healing to occur. The shaman tells them that Rowan's biggest challenges will end that day. They then make the trip home.
It did in fact help him.
This was all so incredible for me to watch. I saw their story as the perfect analogy for all of these things. You climb a mountain for what seems like ages. You struggle to get there. You are exhausted. It would be a hell of a lot easier just to go home. You wonder why you chose to climb this mountain. Your child is not happy. Your family is not happy. There are moments of emotional outbursts.
And finally, you get to the top. You get to the summit. You are at the place that you needed to be. It takes a bit of adjustment. From there, the healing you were trying for this whole time just happens effortlessly.
The timing of watching this could not have been better. I'm watching this exact thing happen in my own home. My own son has made giant gains just in these last six weeks or so. He is finally potty trained. He started pooping on the potty just a week or so ago and he's doing it, independently. No accidents. Overnight and everything. He has started showing some great interpersonal skills, and he is interacting with us like he never did before. It's things we've been trying to get him to learn for a long time, and trying everything to do them. He's just doing them now. Like it's no big deal.
We have no idea what's happened. In fact, we had been doing a trial off of supplements. The gains continued, in fact they started accelerating. Something in his body just chose the time and place to heal. Specifically we had him on Enhansa for nearly a year, and decided to do a trial off of it. As the saying goes... "If it ain't broke, don't fix it." But now we aren't sure what to do. We don't want this to stop. We are seeing our DAN! Dr on June 15. So, we'll see how this next month goes. I think we will just let things happen for a bit and roll with it.
We began intensive therapy recently and the therapists are just starting to get to know Riley. I know that soon they will start to challenge him and we will have a greater time commitment devoted to it. It's been slow and steady to start, which has been a good thing. We aren't quite sure how it will effect our other kids and how we will make it all work. I am just glad that he is absorbing so much, learning so much, and is so ready for this therapy. Of course I wish we could have started two years ago. It's really unfair we had to wait this long. It is what it is. I'm just glad the time is here.
Though some of the messages in the movie are somewhat annoying (I didn't catch the names of some of the folks who were interviewed, but one was quite obviously part of the neurodiversity movement) it was thought provoking. It also really spoke to the journey each family takes in trying to help their child. For some of us, it's fighting a system and working to get our child therapy, schooling, medical help... whatever our child needs. We all have our own trip to Mongolia.
In part of the film, they are going to see one of the most powerful shamanic healers in the area. In order to get there, they have to climb higher and higher into the mountains, for days. They are on horseback the entire time. I'm sure the two minutes of the film devoted to this was actually a very exhausting journey for those who did it. Once they finally get to the top, they have to wait a day for the shaman to decide if he will even see them. When he does, Rowan (their son) is ready and willing to allow this healing to occur. The shaman tells them that Rowan's biggest challenges will end that day. They then make the trip home.
It did in fact help him.
This was all so incredible for me to watch. I saw their story as the perfect analogy for all of these things. You climb a mountain for what seems like ages. You struggle to get there. You are exhausted. It would be a hell of a lot easier just to go home. You wonder why you chose to climb this mountain. Your child is not happy. Your family is not happy. There are moments of emotional outbursts.
And finally, you get to the top. You get to the summit. You are at the place that you needed to be. It takes a bit of adjustment. From there, the healing you were trying for this whole time just happens effortlessly.
The timing of watching this could not have been better. I'm watching this exact thing happen in my own home. My own son has made giant gains just in these last six weeks or so. He is finally potty trained. He started pooping on the potty just a week or so ago and he's doing it, independently. No accidents. Overnight and everything. He has started showing some great interpersonal skills, and he is interacting with us like he never did before. It's things we've been trying to get him to learn for a long time, and trying everything to do them. He's just doing them now. Like it's no big deal.
We have no idea what's happened. In fact, we had been doing a trial off of supplements. The gains continued, in fact they started accelerating. Something in his body just chose the time and place to heal. Specifically we had him on Enhansa for nearly a year, and decided to do a trial off of it. As the saying goes... "If it ain't broke, don't fix it." But now we aren't sure what to do. We don't want this to stop. We are seeing our DAN! Dr on June 15. So, we'll see how this next month goes. I think we will just let things happen for a bit and roll with it.
We began intensive therapy recently and the therapists are just starting to get to know Riley. I know that soon they will start to challenge him and we will have a greater time commitment devoted to it. It's been slow and steady to start, which has been a good thing. We aren't quite sure how it will effect our other kids and how we will make it all work. I am just glad that he is absorbing so much, learning so much, and is so ready for this therapy. Of course I wish we could have started two years ago. It's really unfair we had to wait this long. It is what it is. I'm just glad the time is here.
In the complete blur that is the last two years, I have rarely looked back. I guess it’s been partly a defense mechanism, partly just that it’s hard to see your child each day and really see the change. This morning, which happens to be two years since D-Day (the day Riley was tentatively diagnosed) I am flooded with memories. I describe my feelings of grief surrounding autism usually have something to do with my stomach, the wind knocked out of me, etc. This morning it’s not any of those things. I can’t even describe it.
On that day, May 14, 2008, our babysitter, who is now our “respite provider” (meaning only that now the Medicaid waiver is covering what she’s been doing for our family for over two years) was watching our younger son. He was 11 months at the time, and it was the first time I’d left him with her alone. Riley and I went to see Dr W, and I was on edge. I was afraid he’d give my child a label. I was afraid people would think that I was somehow seeking one. I was really looking for him to say “This is all in your head. There’s nothing wrong with him.” as I’d been hearing for the better part of the previous year. I’m not sure why people say things like that to parents. I would think that it was to make the parents feel more at ease, as to say “Every parent worries.” Why are we so quick to tell others that their children will be fine, that they will grow out of it, that they will catch up. A mother knows. And I think I knew.
I watched as the session went by like a giant smudgy fog. At one point, he was saying something positive and I exhaled and said, “So it’s not autism or anything.“ He backed up his words and got a concerned look on his face, as though I had just missed everything he was saying. I did miss it. I wasn’t ready to hear it. I listened as he talked about speech programs (WHAT? Riley did not have speech problems!) and talked about therapy programs. That did me in. I heard him say the names of two of the autism therapy providers. I was familiar with them, since I our beloved babysitter (respite provider) worked for one of them, and I had a friend who did as well. My heart sank. The tears that had been flowing during part of the appointment turned into a downpour. I felt sick. He was talking about MY baby. He was talking about MY baby having therapy. MY baby had to have therapy through an AUTISM provider.
It was obvious this was too much. He suggested we come back to talk in a few weeks.
I took Riley to McDonalds to play. I wasn’t ready to come home. He hadn’t ever been there before. I sat with him and it was as though for the first time I realized how different he was. The children behind us sat with their dad eating and talking. My child was all over the place, tore apart his hamburger, and people were staring at us. In a few hours, I went from thinking I was a horrible parent who needed help disciplining her child to realizing it wasn’t my fault.
Two years ago, this healing journey began. Not just my son's, but mine. My family's.
On that day, May 14, 2008, our babysitter, who is now our “respite provider” (meaning only that now the Medicaid waiver is covering what she’s been doing for our family for over two years) was watching our younger son. He was 11 months at the time, and it was the first time I’d left him with her alone. Riley and I went to see Dr W, and I was on edge. I was afraid he’d give my child a label. I was afraid people would think that I was somehow seeking one. I was really looking for him to say “This is all in your head. There’s nothing wrong with him.” as I’d been hearing for the better part of the previous year. I’m not sure why people say things like that to parents. I would think that it was to make the parents feel more at ease, as to say “Every parent worries.” Why are we so quick to tell others that their children will be fine, that they will grow out of it, that they will catch up. A mother knows. And I think I knew.
I watched as the session went by like a giant smudgy fog. At one point, he was saying something positive and I exhaled and said, “So it’s not autism or anything.“ He backed up his words and got a concerned look on his face, as though I had just missed everything he was saying. I did miss it. I wasn’t ready to hear it. I listened as he talked about speech programs (WHAT? Riley did not have speech problems!) and talked about therapy programs. That did me in. I heard him say the names of two of the autism therapy providers. I was familiar with them, since I our beloved babysitter (respite provider) worked for one of them, and I had a friend who did as well. My heart sank. The tears that had been flowing during part of the appointment turned into a downpour. I felt sick. He was talking about MY baby. He was talking about MY baby having therapy. MY baby had to have therapy through an AUTISM provider.
It was obvious this was too much. He suggested we come back to talk in a few weeks.
I took Riley to McDonalds to play. I wasn’t ready to come home. He hadn’t ever been there before. I sat with him and it was as though for the first time I realized how different he was. The children behind us sat with their dad eating and talking. My child was all over the place, tore apart his hamburger, and people were staring at us. In a few hours, I went from thinking I was a horrible parent who needed help disciplining her child to realizing it wasn’t my fault.
Two years ago, this healing journey began. Not just my son's, but mine. My family's.
Subscribe to:
Posts (Atom)
