This will be long. It's not Autism Awareness Month but I am aware of autism all the time. And I will be early!
I have not written about autism here. Partly because this blog is focused on my creative endeavors. But I went to Mica's blog and read about her niece being diagnosed with autism. Then I went to Mica's sister-in-law's blog, and followed some links found there. Finally I ended up at Injecting Sense and followed a link to a clip from a feature length film called
Autism Every Day
If you can take 13 minutes of your day to watch this video you will get a window into what having an autistic child is like on the difficult days. If this video had been around when my child was young I wouldn't have felt so alone. I stopped talking about having a child with autism about 5 or 6 years ago - because the challenges I was facing in parenting were so unlike what everyone else was dealing with. Or family members' hearts would break and often there was nothing they could do. I didn't want them to be in pain, too. But this film can give an idea of what life is like, and as autism is on the rise, it's likely you know someone who has a child or grandchild with autism. A moving picture is worth a thousand words.
There is some controversy that the film Autism Every Day shows only the dark side of autism, and not the bright moments. This may be true, but when you're a mom or dad who has gone for weeks without a full night's sleep it helps to know someone understands this place you've found yourself in with your child. When my son was young I went to the library and checked out the books there - most of them still had the "refrigerator mother" cause. Yeah, it's all your fault mom. You didn't love him enough. You're cold. Or alternatively, there is nothing you can do...you should just check him in now in the institution, because that's what he can do.
So I turned to the web and starting doing research, somewhat obsessively. At 2 a.m. when Alex was awake I would insert the Sesame Street "Bedtime Stories and Songs" video in and research autism while he was lulled back to sleep to the song "Here In the Middle of Imagination...." I'm so glad I had the internet back in 1995, and people were beginning to do research and post it online. I was part of a terrific parent support group called Parents Supporting Parents. I've lost touch with the group but it was a lifeline for me. If you're a past member, please contact me using the e-mail button in the sidebar.
My son has surpassed what I thought he would do when he was young. When he was two, and three, one activity we could have shared attention in was blowing bubbles. I bought gallons and gallons and gallons of bubble solution and numerous of those big bubble wands. We would go through four or five wands in a season. I spent hours waving my arms and popping bubbles with him. I sat at the computer and did "Ruff's Bone" with him when he was two. I chipped away, trying to find activities that would hold his interest so he wouldn't play with the dust motes floating in the rays of the sun. He used to beat the furniture to harvest dust motes. I would watch him in despair, because if I didn't intervene he would do this for hours and hours.
At that time, research said there is a window from ages 3 to 5 to help him. Some people were holding out that there was a cure for autism, and if you did this particular treatment (inject your child with pig insulin, buy magnetic soles, do 40 hours of ABA a week...the list goes on) your child would be cured of autism. Sifting through all that and trying to decide what to do was filled with angst. Because if you only had this window, there really wasn't a margin for error, right? Planning and coordinating treatment in the early years is a full-time job. You have to jump through a lot of hoops. My son is not cured, but he has grown in ways I couldn't imagine when he was two or three.
There is a saying, "It takes a village to raise a child." Well, it's even truer with a child with autism, but the mainstream village doesn't necessarily know what to do, y'know? Our "village" of people involved doctors and consultants and teachers and ed techs and teenagers who had energy when I didn't. One of the things that I recognized early on was that I could not be everything my son needed me to be. This was necessary for my son's growth but oh was it painful. What mom wants to feel they can't meet their son's needs?
This "village" of people participated in the dreaming process for Alex and it has been for his good, and actually mine, too. Betsey Field, SLP, has been a part of dreaming for Alex since he was 3 or 4 years old. She has been a beautiful thread woven into the fabric of our lives - sometimes in the forefront, sometimes more in the background, but always there in the process of setting goals for Alex. When I wasn't sure what to dream for Alex Betsey and teachers and ed techs and specialists would offer a possibility of something to dream about. I wish I could name them all, but I would have a village worth of names listed here, and I know I would miss someone, because by a small count there are over 100 of you who have touched Alex's life along the way.
Alex make his own snack? Are you kidding? Alex now can make his own snacks. Alex swim 18 laps in a pool? Alex now swims 18 laps in a pool without a life preserver. Alex sign his name in cursive? Alex now signs documents in cursive. A friend said, "I think Alex could participate in the church play." Alex had a speaking part in the last play and did great. This from the boy who used to greet people with, "Don't touch the microwave!"
There are more dreams to come. We've been particularly fortunate to have a school system that has met Alex's needs. I know this is not the case for every child in our nation. I know that many moms and dads don't have the "village" that our boy has. And I hope the village stays with us.
It's still not easy, even though he has come so far. We do things to make it easier for him without realizing it. Like when we're walking in public we automatically place our bodies between he and fire alarms without calling attention to the fire alarms. There is some truth that when you have a child with autism, the family can sometimes center around that. It's much more than one piece - sometimes it feels like half the pie. But we have seen beauties that we wouldn't have seen if autism hadn't touched our lives.
There is some controversy that the film Autism Every Day shows only the dark side of autism, and not the bright moments. This may be true, but when you're a mom or dad who has gone for weeks without a full night's sleep it helps to know someone understands this place you've found yourself in with your child. When my son was young I went to the library and checked out the books there - most of them still had the "refrigerator mother" cause. Yeah, it's all your fault mom. You didn't love him enough. You're cold. Or alternatively, there is nothing you can do...you should just check him in now in the institution, because that's what he can do.
So I turned to the web and starting doing research, somewhat obsessively. At 2 a.m. when Alex was awake I would insert the Sesame Street "Bedtime Stories and Songs" video in and research autism while he was lulled back to sleep to the song "Here In the Middle of Imagination...." I'm so glad I had the internet back in 1995, and people were beginning to do research and post it online. I was part of a terrific parent support group called Parents Supporting Parents. I've lost touch with the group but it was a lifeline for me. If you're a past member, please contact me using the e-mail button in the sidebar.
My son has surpassed what I thought he would do when he was young. When he was two, and three, one activity we could have shared attention in was blowing bubbles. I bought gallons and gallons and gallons of bubble solution and numerous of those big bubble wands. We would go through four or five wands in a season. I spent hours waving my arms and popping bubbles with him. I sat at the computer and did "Ruff's Bone" with him when he was two. I chipped away, trying to find activities that would hold his interest so he wouldn't play with the dust motes floating in the rays of the sun. He used to beat the furniture to harvest dust motes. I would watch him in despair, because if I didn't intervene he would do this for hours and hours.
At that time, research said there is a window from ages 3 to 5 to help him. Some people were holding out that there was a cure for autism, and if you did this particular treatment (inject your child with pig insulin, buy magnetic soles, do 40 hours of ABA a week...the list goes on) your child would be cured of autism. Sifting through all that and trying to decide what to do was filled with angst. Because if you only had this window, there really wasn't a margin for error, right? Planning and coordinating treatment in the early years is a full-time job. You have to jump through a lot of hoops. My son is not cured, but he has grown in ways I couldn't imagine when he was two or three.
There is a saying, "It takes a village to raise a child." Well, it's even truer with a child with autism, but the mainstream village doesn't necessarily know what to do, y'know? Our "village" of people involved doctors and consultants and teachers and ed techs and teenagers who had energy when I didn't. One of the things that I recognized early on was that I could not be everything my son needed me to be. This was necessary for my son's growth but oh was it painful. What mom wants to feel they can't meet their son's needs?
This "village" of people participated in the dreaming process for Alex and it has been for his good, and actually mine, too. Betsey Field, SLP, has been a part of dreaming for Alex since he was 3 or 4 years old. She has been a beautiful thread woven into the fabric of our lives - sometimes in the forefront, sometimes more in the background, but always there in the process of setting goals for Alex. When I wasn't sure what to dream for Alex Betsey and teachers and ed techs and specialists would offer a possibility of something to dream about. I wish I could name them all, but I would have a village worth of names listed here, and I know I would miss someone, because by a small count there are over 100 of you who have touched Alex's life along the way.
Alex make his own snack? Are you kidding? Alex now can make his own snacks. Alex swim 18 laps in a pool? Alex now swims 18 laps in a pool without a life preserver. Alex sign his name in cursive? Alex now signs documents in cursive. A friend said, "I think Alex could participate in the church play." Alex had a speaking part in the last play and did great. This from the boy who used to greet people with, "Don't touch the microwave!"
There are more dreams to come. We've been particularly fortunate to have a school system that has met Alex's needs. I know this is not the case for every child in our nation. I know that many moms and dads don't have the "village" that our boy has. And I hope the village stays with us.
It's still not easy, even though he has come so far. We do things to make it easier for him without realizing it. Like when we're walking in public we automatically place our bodies between he and fire alarms without calling attention to the fire alarms. There is some truth that when you have a child with autism, the family can sometimes center around that. It's much more than one piece - sometimes it feels like half the pie. But we have seen beauties that we wouldn't have seen if autism hadn't touched our lives.
6 thinkers thought (posted after approval):
God bless you Dixie. I have tears in my eyes now after reading your post. I have a nephew with autism. Sadly my brother and sister in law are divorced-it was too much for their marriage. I never see my nephew now, ever. But I pray for him and my SIL.You are strength itself.
I'm giving you the "You Make My Day" award. You inspire me! To collect your award, go to my blog at:
http://anniebeezdoll.blogspot.com/
Dixie,
You are an amazing woman. Thank you so much for sharing this with me. God Bless you and your family and Alex.
Love,
Tink
Dix,
You are such a beautiful patient kind soul!!!! I have never liked the saying "it takes a village..." I have always thought it takes only 2 loving parents to raise a caring thoughtful child, but you have helped me see a different meaning in the phrase!!! This post is very touching!!!
Many Hugs,
J-O
I don't know much about autism, I have only known one person with this and I remember how patient his mother was with him, he is a grown man, now. I remember of the glimpse I had of their lives how much in awe I was of her making sure she exposed him in everyway she could to help him have a wonderful life. Having a daughter with a rare bone disease and all that goes with it, I can say that there are things I would not appreciate had this not touched my life, as you said above, Dixie. There are so many serious things about raising and loving children with special needs and sometimes it seems so hopeless, but there are so many silver linings that make life so special- and I also had to learn about the village, only it was for my other children as sometimes this was overwhelming to them and that was painful for me to have to let them go to a point and let that happen. But if we are patient and don't expect too much, I think we all win. I enjoyed your story about you and your son very much.
Carmen
Thanks for your comments. There are new challenges and new joys every day. :-)
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