The Simple Life Part 1: Autism
One thing about having 3 sick kids at a time is that you spend most of your days rocking one of them in a rocking chair. And if this happens to occur when the other two are sleeping, then you've got a lot of time on your hands to just sit and think. So, that's what I've been doing the last few weeks. I've had a real change come over me since Christmas. I am so desiring to live a live of simplicity. It's something that Sim's been wanting for a long time. I have no doubt that if it wasn't for me he'd be living in a tiny cottage in the middle of Wales or in a yurt in a forest in Colorado. He's extremely minimalist and detests waste. I'm not joking. His closest is extremely bare. Yesterday, he wore a shirt that he's had for 11 years. And even though I gave him two brand new sweaters 9 years ago, one of them still has the tags on it... because the other "still has a lot of life in it". So, honestly, I have no idea how he's stayed married to me this long - with all my pack ratting ways. I guess he was hoping that one day I'd see the light. And, wouldn't you know, that light just hit me like a spotlight about 6 weeks ago... and I can practically see the change in front of my eyes.
There are several ways that we are trying to live a life of voluntary simplicity. It's something that's going to take a long time (for me at least), but I think it will be better for our whole family in the longrun. We really are trying to declutter and live within our means and make wise purchases. We're really trying to think about what we buy and what we use and what we need - especially what we need vs. what we want. And, I have to admit, I can easily slip into the role of the Queen of the Wants. But basically, we're trying to declutter, recycle, buy used (except for underwear b/c that's just plain nasty), be economical, buy local and organic where possible, spend tons of time outside, and lessen our ecological footprint. All the while trying to raise three kids who appreciate our earth, who long to be in nature, and who grow up to be conscious and wise consumers who realize the freedom of living debt-free.
But I also think that living simply isn't just about decluttering the house and buying your winter coat at a thrift store. I think it's also about just slowing down. Not being involved in everything. Realizing that you're not Super Mom. One of the big changes in our lives - that we started about a year and a half ago - was to quit trying to recover Noah.
So, yes, I know this blog is titled Recovering Noah, so it's probably weird for me to say that we're not trying to recover him anymore. And, maybe, if you're reading this and you have a child with autism, you might initially feel sad or a bit letdown. I feel sad even just writing this. And while I still feel anxious and feel like we should be doing more (like spending $$$$ on more allergy tests), I don't ever want our lives to go back to where they were when we were in the throes of "recovering Noah".
I think anyone who is trying to recover their child can attest to the fact that it's an extremely emotionally and financially draining experience. ABA schools in Dallas cost $45,000 year. ABA consultants can cost $200 an hour. Private therapists - usually college students - are $15 to $25 an hour - and experts recommend 40 hours a week. GI's who specialize in gut issues for children with autism charge $500 an hour. DAN doctors are usually $200 to $300 an hour. Allergy testing is anywhere from $500 to $1000. The Yasko protocol can easily run up to $2000 a month. OT's are around $150 an hour. Cranial sacral therapists are $50 for 30 minutes. And guess what? Insurance doesn't cover it. Not a bit. Not a penny.
And, of course, there are all the success stories of children who have recovered. So you're left with the hope that your child can, too. Because other kids have. And all the "experts" say that there's a tiny window for recovery. If you can do all these therapies before your child is 5 - preferably before 3 - then there's a chance they might recover. Ahhh, there's that magic word. Chance. There's a chance he or she might recover. But you have to act now. And since autism affects each child differently, there's no manual to follow. And, if like us, your child doesn't respond to one therapy, then you can continue on to the next one... and the next one.. and the next one. And all the time, the magic clock is ticking. Your child is 3 and then 4 and then 5. But some believe that maybe the window doesn't close until age 6... so you keep trying... just one more year.
So what happens is that you spend all your time researching... hours upon hours researching medical journals and records. I truly believe that we autistic moms know more about autism, nutrition, and biochemistry than any recent medical school graduate. I'm not trying to be brash. It's true. Do you have any idea as to how many hours we spend doing medical research? In the first year alone, I spent over 1800 hours - at least - researching autism. That's just the first year. And I've been at this for 5 years.
But what happens is that you become obsessed. Every single thought is about autism. Every single conversation. Your life is only about autism. And it's not bad. You can't fault us moms. We're on a mission to save our children. I was on a mission to keep my child from being institutionalized. And when you're faced with that, you will do whatever it takes - and spend whatever time it takes - to find a cure.
And sometimes it works. I know kids who are now talking.. and kids who are now mainstreamed.. and kids who no longer have an autism diagnosis. But it didn't happen for Noah. He became what most moms of autistic children fear... a nonresponder.
So, we hit rock bottom. Or should I say.. I hit rockbottom. Simeon was willing to accept Noah for how he is all along. But I couldn't get the future out of my head. I would lay awake for hours crying because I couldn't bear to think what would happen to Noah when we die. I mean, God willing, that's not going to happen for 60 more years... but I found myself crying about it. I would worry about what would happen when he hit puberty... because a lot of nonverbal boys who hit puberty suddenly become aggressive - and many have to be put in an institution.
And one day, I found some pictures of Eli as a baby. And you know what? I don't even remember it. An entire year of Eli's life - the very first year that he was with us - and I don't even remember it. Not a bit. Because that was the year that Noah was at his worst... and me, too. We had therapists coming and going at all hours. We were constantly going to doctor's appointments, OT, PT, Speech, you name it. And if we weren't at therapy or didn't have a therapist at the house, then I was on the computer researching. And then we sold our house and moved in with my parents so that we could have the money to continue our quest to recover Noah. And I was driving 4 hours roundtrip hours several times a week to take Noah here, there, and everywhere. We even moved to Tennessee for 3 months because we thought we'd finally found a therapy that would help.
And it all came down on me like a flashing neon sign. I could not remember the first year of Eli's life. Here we where... financially drained... emotionally drained...driving all over the U.S. looking for help... feeling depressed because it seemed that everyone else was improving except for Noah.... and the whole time my kids where growing up and I wasn't making any memories with them. Noah and Eli's childhood was being spent at doctors' offices. That would be their memories. That would be what they remembered from their childhood. And that was awful.
So we made a decision and it was hard - very, very hard to cut back - on everything. We decided to focus on what was working - even if it didn't promise the miracle of recovery. We decided that we would no longer give Noah 100 supplements a day hoping that it would kickstart his methylation cycle. We would no longer go to DAN doctors where we'd be tempted to do chelation or the newest and latest product that had just come out. We decided to pull Noah out of school - for many reasons- but also because it wasn't fair to wake him up at 6:30 in the morning when he didn't fall asleep until 4:30. And it wasn't fair on the kids or Sim for me to be stressed out and anxious all the time.. constantly wondering if this supplement or that treatment would be one to pull him through. The kids needed their Mom and Sim needed his wife. Autism had already stolen Noah from us... I vowed that it wouldn't take me, too.
And that's how we came to "declutter" autism out of our lives. We still do therapies: homeopathy, which is cheap, safe, and longterm. It's also slow, but Noah's had no side effects to it and it's a very gentle holistic therapy. We do RPM in Austin twice a month, OT in Kaufman once a week, and we drive to Dallas once a month for cranial sacral therapy and that's it. It still probably sounds like a lot, but believe me, we cut out 75% of Noah's therapies - and it feels GOOD.
I don't really know how to explain exactly how this ties in with trying to live a simpler life... but just not having the urgent I have to do this right now because our window of time is closing is so freeing. And we've just really gotten to where we have put this in God's hands. He knows what His plan is for Noah. My purpose in this plan is just to love Noah and be his mom. We'll never quit trying to help Noah... but we're looking more to heal him than recover him. We just want him to be healthy... and who knows, maybe the rest will take care of itself.
So, anyway, Part 1 of our quest to live a Simple Life had to do with giving up our dream of Recovering Noah. We just had to release it like a balloon in a wind... and watch it float away. And, yes, it brought torrential tears. It still does. I still have to fight the urge to NOT take Noah to a DAN doctor or to NOT do chelation with him or to NOT spend money on this test or that test. Even earlier this week, I read an article about how Jenny McCarthy recovered her son - and I got terribly depressed and went to straight to the computer to research all the latest autism news - thinking that maybe I'd find something new that we hadn't yet tried. But, I have to tell you, he is doing so much better now. He is so happy since we stopped doing so much, and I think part of that is that we're not all so stressed out anymore. We made an active decision to not let autism rule our lives. And that decision has allowed us to finally live.
So, there's Part 1 of how we are trying to live A Simple Life. It was a huge step. A huge, heartbreaking, tear-inducing, oh my gosh, are we making the right decision step. And we made it. And we are better for it. And we're making memories. New memories. Precious, sweet memories. Ones that we'll definitely remember.
Leslie
There are several ways that we are trying to live a life of voluntary simplicity. It's something that's going to take a long time (for me at least), but I think it will be better for our whole family in the longrun. We really are trying to declutter and live within our means and make wise purchases. We're really trying to think about what we buy and what we use and what we need - especially what we need vs. what we want. And, I have to admit, I can easily slip into the role of the Queen of the Wants. But basically, we're trying to declutter, recycle, buy used (except for underwear b/c that's just plain nasty), be economical, buy local and organic where possible, spend tons of time outside, and lessen our ecological footprint. All the while trying to raise three kids who appreciate our earth, who long to be in nature, and who grow up to be conscious and wise consumers who realize the freedom of living debt-free.
But I also think that living simply isn't just about decluttering the house and buying your winter coat at a thrift store. I think it's also about just slowing down. Not being involved in everything. Realizing that you're not Super Mom. One of the big changes in our lives - that we started about a year and a half ago - was to quit trying to recover Noah.
So, yes, I know this blog is titled Recovering Noah, so it's probably weird for me to say that we're not trying to recover him anymore. And, maybe, if you're reading this and you have a child with autism, you might initially feel sad or a bit letdown. I feel sad even just writing this. And while I still feel anxious and feel like we should be doing more (like spending $$$$ on more allergy tests), I don't ever want our lives to go back to where they were when we were in the throes of "recovering Noah".
I think anyone who is trying to recover their child can attest to the fact that it's an extremely emotionally and financially draining experience. ABA schools in Dallas cost $45,000 year. ABA consultants can cost $200 an hour. Private therapists - usually college students - are $15 to $25 an hour - and experts recommend 40 hours a week. GI's who specialize in gut issues for children with autism charge $500 an hour. DAN doctors are usually $200 to $300 an hour. Allergy testing is anywhere from $500 to $1000. The Yasko protocol can easily run up to $2000 a month. OT's are around $150 an hour. Cranial sacral therapists are $50 for 30 minutes. And guess what? Insurance doesn't cover it. Not a bit. Not a penny.
And, of course, there are all the success stories of children who have recovered. So you're left with the hope that your child can, too. Because other kids have. And all the "experts" say that there's a tiny window for recovery. If you can do all these therapies before your child is 5 - preferably before 3 - then there's a chance they might recover. Ahhh, there's that magic word. Chance. There's a chance he or she might recover. But you have to act now. And since autism affects each child differently, there's no manual to follow. And, if like us, your child doesn't respond to one therapy, then you can continue on to the next one... and the next one.. and the next one. And all the time, the magic clock is ticking. Your child is 3 and then 4 and then 5. But some believe that maybe the window doesn't close until age 6... so you keep trying... just one more year.
So what happens is that you spend all your time researching... hours upon hours researching medical journals and records. I truly believe that we autistic moms know more about autism, nutrition, and biochemistry than any recent medical school graduate. I'm not trying to be brash. It's true. Do you have any idea as to how many hours we spend doing medical research? In the first year alone, I spent over 1800 hours - at least - researching autism. That's just the first year. And I've been at this for 5 years.
But what happens is that you become obsessed. Every single thought is about autism. Every single conversation. Your life is only about autism. And it's not bad. You can't fault us moms. We're on a mission to save our children. I was on a mission to keep my child from being institutionalized. And when you're faced with that, you will do whatever it takes - and spend whatever time it takes - to find a cure.
And sometimes it works. I know kids who are now talking.. and kids who are now mainstreamed.. and kids who no longer have an autism diagnosis. But it didn't happen for Noah. He became what most moms of autistic children fear... a nonresponder.
So, we hit rock bottom. Or should I say.. I hit rockbottom. Simeon was willing to accept Noah for how he is all along. But I couldn't get the future out of my head. I would lay awake for hours crying because I couldn't bear to think what would happen to Noah when we die. I mean, God willing, that's not going to happen for 60 more years... but I found myself crying about it. I would worry about what would happen when he hit puberty... because a lot of nonverbal boys who hit puberty suddenly become aggressive - and many have to be put in an institution.
And one day, I found some pictures of Eli as a baby. And you know what? I don't even remember it. An entire year of Eli's life - the very first year that he was with us - and I don't even remember it. Not a bit. Because that was the year that Noah was at his worst... and me, too. We had therapists coming and going at all hours. We were constantly going to doctor's appointments, OT, PT, Speech, you name it. And if we weren't at therapy or didn't have a therapist at the house, then I was on the computer researching. And then we sold our house and moved in with my parents so that we could have the money to continue our quest to recover Noah. And I was driving 4 hours roundtrip hours several times a week to take Noah here, there, and everywhere. We even moved to Tennessee for 3 months because we thought we'd finally found a therapy that would help.
And it all came down on me like a flashing neon sign. I could not remember the first year of Eli's life. Here we where... financially drained... emotionally drained...driving all over the U.S. looking for help... feeling depressed because it seemed that everyone else was improving except for Noah.... and the whole time my kids where growing up and I wasn't making any memories with them. Noah and Eli's childhood was being spent at doctors' offices. That would be their memories. That would be what they remembered from their childhood. And that was awful.
So we made a decision and it was hard - very, very hard to cut back - on everything. We decided to focus on what was working - even if it didn't promise the miracle of recovery. We decided that we would no longer give Noah 100 supplements a day hoping that it would kickstart his methylation cycle. We would no longer go to DAN doctors where we'd be tempted to do chelation or the newest and latest product that had just come out. We decided to pull Noah out of school - for many reasons- but also because it wasn't fair to wake him up at 6:30 in the morning when he didn't fall asleep until 4:30. And it wasn't fair on the kids or Sim for me to be stressed out and anxious all the time.. constantly wondering if this supplement or that treatment would be one to pull him through. The kids needed their Mom and Sim needed his wife. Autism had already stolen Noah from us... I vowed that it wouldn't take me, too.
And that's how we came to "declutter" autism out of our lives. We still do therapies: homeopathy, which is cheap, safe, and longterm. It's also slow, but Noah's had no side effects to it and it's a very gentle holistic therapy. We do RPM in Austin twice a month, OT in Kaufman once a week, and we drive to Dallas once a month for cranial sacral therapy and that's it. It still probably sounds like a lot, but believe me, we cut out 75% of Noah's therapies - and it feels GOOD.
I don't really know how to explain exactly how this ties in with trying to live a simpler life... but just not having the urgent I have to do this right now because our window of time is closing is so freeing. And we've just really gotten to where we have put this in God's hands. He knows what His plan is for Noah. My purpose in this plan is just to love Noah and be his mom. We'll never quit trying to help Noah... but we're looking more to heal him than recover him. We just want him to be healthy... and who knows, maybe the rest will take care of itself.
So, anyway, Part 1 of our quest to live a Simple Life had to do with giving up our dream of Recovering Noah. We just had to release it like a balloon in a wind... and watch it float away. And, yes, it brought torrential tears. It still does. I still have to fight the urge to NOT take Noah to a DAN doctor or to NOT do chelation with him or to NOT spend money on this test or that test. Even earlier this week, I read an article about how Jenny McCarthy recovered her son - and I got terribly depressed and went to straight to the computer to research all the latest autism news - thinking that maybe I'd find something new that we hadn't yet tried. But, I have to tell you, he is doing so much better now. He is so happy since we stopped doing so much, and I think part of that is that we're not all so stressed out anymore. We made an active decision to not let autism rule our lives. And that decision has allowed us to finally live.
So, there's Part 1 of how we are trying to live A Simple Life. It was a huge step. A huge, heartbreaking, tear-inducing, oh my gosh, are we making the right decision step. And we made it. And we are better for it. And we're making memories. New memories. Precious, sweet memories. Ones that we'll definitely remember.
Leslie
Comments
I cannot explain the huge difference in your tone and pace and emotions over the last year. I noticed another radical change as the time drew close to bring Nandini home. That, of course, I understood, as it's amazing how having MORE children can actually bring MORE chilling out. I don't think someone can understand until you experience it. You almost HAVE to. Either that, or you'll go loony.
Anyway, it has been so very interesting to watch it in written words. I could actually tell that the whole tempo of your home had changed before you even wrote this post.
I can't wait to read more, as we have radically simplified, and continue to do so. Our oldest can lose sleep at the drop of a hat, if she's having a rough Tourettes day. If we had to force her into her day, it would just snowball downhill. Yet, when you can just let her sleep in and take care of her body, things go much (MUCH) more smoothly for all of us.
I'm so glad I "found" you! :)
1. God is the only one who knows the future for Noah and there is no better place for him to be than in the care of God.
2. I am so thankful Sim is not running around in recycled underwear...... At least he has his limits....LOL.
We will continue to pray for you guy's and Noah.
She is totally joyful in each and every moment in life and I feel like God is trying to teach me the same. I trust that He will provide for each of us and our children and that we will truely now and understand how it is "...to be content in every situation." Hugs, Jenn