June 20, 2011
Ezra is jumping about the living room, like a chimpanzee in heat, screaming and yelling, totally hyper.
Micah: Whoa Ezra. You need to calm down. Take some medicine. MO-OM! Ezra needs some GABA (a supplement we used to give him to help him be more calm).
Talking on the skype with grandma and grandpa.
Grandma: Ezra, how is Granny?
Ezra: She's reading a book.
Micah: No. She's an old lady. She's not very strong.
Monday, June 20, 2011
Put off having more children
Disclaimer: do what you think is best. I have no business telling you to put off having kids. Everyone decides what is best for them.
My story
Ezra was merely a year old when we got pregnant with Micah. I had a little inkling something wasn't developing right with Ezra but it was too early to tell, and I didn't even know about autism. We wanted more children, but didn't really plan to get pregnant again. A little moment of indiscretion led to our darling Micah. I'm so grateful for my treasure, and I love him with all my heart.
I do admit though that as a mother one of the major sources of my stress and anxiety about Ezra's challenges have to do with Micah. When I was 8 months pregnant, Aaron had kidney cancer. He had to have his kidney removed, and I was left to care for both him and Ezra. He couldn't even move or lift anything. I'm sure Ezra felt the anxiety I felt for Aaron. He became more and more difficult, and it was obvious by now (he was 18 months old) that something was really wrong. He didn't have any words, and had multiple tantrums a day. He had severe separation anxiety, and freaked out if he couldn't see me. He spent most of the day right at my side, or on my hip. His attention span was non-existent. He would spend less than a second with a toy, and demanded my attention every second of the day. Then Micah was born. He was such a beautiful little baby. He was gentle, calm, snuggly, and just plain adorable. I was in love with him just as any mother is with her newborn. Ezra of course was jealous, and became more and more difficult to manage, but would only go to me. I had to constantly hand Micah off to granny or daddy, so I could calm Ezra. I started resenting Ezra for being so demanding. Two months after Micah's birth, we had Ezra assessed and he started getting therapies. I spent a lot of my week taking Ezra to his different therapies, where I couldn't bring Micah along. For me that was and still is very difficult.
One of my major inner conflicts is to want to be with Micah, but knowing that Ezra is the one who needs my help the most. If I don't spend time with Micah, he will still develop normally, whereas leaving Ezra alone to his own world, will severely hinder his brain development. Temple Grandin says in her book The Way I See It, that the worst thing you can do with an autistic child under six is nothing, because the brain is not creating pathways on it's own, and needs stimulation. It tears my heart to shreds when Micah looks at me with big sad eyes, says things like "I wish I was autistic too. Then people would come play with me," when I choose to play with Ezra in the playroom, or spend time training volunteers, watching Ezra in the playroom with them, giving feedback etc. Ezra gets all the attention. People will come to our house, even family, and exclaim with all their energy EZRA, how are you? just to get his attention. Micah will come running up with shining eyes and say HI! and repeat it four or five times, but be completely ignored. When people call, they always ask how Ezra is doing, rarely do they want to know anything about Micah, and he notices. Ezra can demand so much of my energy that I simply have none left to play with Micah. Then I feel guilty, and start to resent Ezra again for taking up so much of my time. It has gotten a bit easier now that Micah is able to understand more that Ezra is different. The other source of major concern is that Ezra is still jealous of Micah and pinches and hurts him all day long. There is nothing that makes me angrier than seeing Ezra who is almost twice Micah's size constantly beating him up.
I know that these problems can be solved by attitudinal work with the Option Process of the Son-Rise program. Life isn't fair for anyone, and the sooner we can accept that, the better...in theory. It's easier said than done.
When we went to Massachusetts, just Ezra, Daddy, and I we saw a completely different boy. Ezra was calm, happy, sweet, and attentive. He never screamed those blood curling screams that he uses at home. Sure he had excellent support from the playroom staff at the Autism Treatment Center, but the major difference was that Micah wasn't there. The minute we got off the plane when we got home and into the car it's like someone flipped a switch and he instead of hugging Micah started pinching him and screaming.
Ezra does love Micah, and Micah adores his older brother. Like all other siblings they learn from each other, the good and bad things.
I just think, that my life would have been a lot easier, if I had waited to have another child until Ezra was six or seven years old. Then I wouldn't have to deal with all this guilt and knowing that no matter how much I give someone is always going to come up short.
Have your child tested for food intolerances
This could be a fairly extensive post, but I don't want to go into all the medical details. I'll try to keep it really simple and short.
Disclaimer: Food intolerance (IgG) and food allergy (IgE) are not the same. A food allergy can be life threatening whereas an intolerance just causes problems with the immune system. It's best to just google the difference (and test for both).
A bit more explanation
There are so many different explanations for what causes or exacerbates autism/autism like symptoms. The most simple and elegant explanation that I've ever read is by Dr. Melillo. He states that Autism, ADHD, and all those kind of brain problems are really a problem of the brain halves not communicating in sync, because one of the brain halves (in ASD that is typically the right side) didn't develop at the same rate as the other half (and here is where you could come up with lots of different reasons why, such as genes, toxicity, vaccines, viruses, etc.) The function of the immune system is divided up between the left and the right brain. When the left brain is doing it's job nicely in producing anti-bodies to patrol the blood for harmful pathogens and the right brain isn't keeping up it's job to check the anti-bodies, then the child develops a lot of food intolerances, because the immune system is compromised.
The solution to this is to strengthen the brain half that is weaker so it can communicate in sync. There are various ways of doing that. Here are the methods I read that will strengthen the weaker brain side:
What have I done so far? Well, nothing. Mainly because of costs. I was going to go to Florida this summer for three months with the kids, so I could do the brain balance program with Ezra, but we didn't quite get the support we needed to do such a venture.
What would I do if I had the money I needed ($22,000)? I would do two 12 week programs of brain balance, and then also buy the Zengar institute's computer and software so we can do neurofeedback training at home with Ezra and Micah with unlimited sessions. Then I would find someone to do Cranio Sacral Therapy with Ezra, and I think we would be good to go.
However, fixing the brain is only 1/2 of the solution. The wrong kinds of foods cause havoc in the digestive system, and once damaged, it will not operate the way it needs to. Everything I've read indicates that the digestive tract doesn't heal itself or recover spontaneously, but needs dietary intervention to heal what was hurt, and restore proper balance. One without the other won't work long term, i.e. just diet alone won't fix the reason the digestion is off, and just fixing the brain, won't help the stomach heal.
Ezra is totally obsessed with food. He wants to eat all the time. He can't get enough into himself, and wants basically only carbs. However, he simply doesn't get enough nutrition from it because his digestion is messed up. So his body keeps demanding more. It's a vicious cycle, which is why the next thing I would recommend is putting your kid on a SCD, or GAPS diet immediately.
The Short Version:
A healthy child is a happier child. If you remove all the things that the immune system is reacting to, then the body has a chance to rest and strengthen it's immune system. The better the immune system, the healthier the child. The healthier the child the less problem behaviors you see, and the more progress you'll see. Or a simple metaphor: if your child's body is a fortress under attack, you want to only send in the troupes that will bring provisions for the soldiers, not the enemy troupes that will attack and weaken your child and that it will have to fight off, when what it really needs is reinforcement. Our job as parents is to figure out what our child's body considers enemy and what reinforcement.
OK. Great idea. Where can I do that?
There are two ways I think. Through bioresonance (non invasive) or blood test. We used Alltess lab. It cost $160 for 180 IgG test. We had the kids' blood drawn here in the Netherlands and sent it via Fedex to the US. Disclaimer: Food intolerance (IgG) and food allergy (IgE) are not the same. A food allergy can be life threatening whereas an intolerance just causes problems with the immune system. It's best to just google the difference (and test for both).
A bit more explanation
There are so many different explanations for what causes or exacerbates autism/autism like symptoms. The most simple and elegant explanation that I've ever read is by Dr. Melillo. He states that Autism, ADHD, and all those kind of brain problems are really a problem of the brain halves not communicating in sync, because one of the brain halves (in ASD that is typically the right side) didn't develop at the same rate as the other half (and here is where you could come up with lots of different reasons why, such as genes, toxicity, vaccines, viruses, etc.) The function of the immune system is divided up between the left and the right brain. When the left brain is doing it's job nicely in producing anti-bodies to patrol the blood for harmful pathogens and the right brain isn't keeping up it's job to check the anti-bodies, then the child develops a lot of food intolerances, because the immune system is compromised.
The solution to this is to strengthen the brain half that is weaker so it can communicate in sync. There are various ways of doing that. Here are the methods I read that will strengthen the weaker brain side:
- Brain Balance program by Dr. Melillo. Costs around $5400-$6000 for a 3hrs/week treatments for 12 weeks. Some include the intolerance blood tests in that price. All the parents I have talked to that did this treatment say it helped their child recover completely from the intolerances and even from autism. Read the book Disconnected Kids, by Dr. Melillo.
- Interactive Metronome helps the brains communicate in sync to some degree.
- Handle I haven't done much research on this but my friend tells me that this does the same thing as brain balance, but with the benefit that you don't need your child's cooperation.
- Neurofeedback training. This is highly effective, but as with all these treatments the efficiency depends on the number of sessions you have the development gap you are trying to fix. I heard it can take up to 100 sessions or more.
- Cranio Sacral Therapy Read this from a fellow blogger with a child that had more allergies than I have ever encountered.
What have I done so far? Well, nothing. Mainly because of costs. I was going to go to Florida this summer for three months with the kids, so I could do the brain balance program with Ezra, but we didn't quite get the support we needed to do such a venture.
What would I do if I had the money I needed ($22,000)? I would do two 12 week programs of brain balance, and then also buy the Zengar institute's computer and software so we can do neurofeedback training at home with Ezra and Micah with unlimited sessions. Then I would find someone to do Cranio Sacral Therapy with Ezra, and I think we would be good to go.
However, fixing the brain is only 1/2 of the solution. The wrong kinds of foods cause havoc in the digestive system, and once damaged, it will not operate the way it needs to. Everything I've read indicates that the digestive tract doesn't heal itself or recover spontaneously, but needs dietary intervention to heal what was hurt, and restore proper balance. One without the other won't work long term, i.e. just diet alone won't fix the reason the digestion is off, and just fixing the brain, won't help the stomach heal.
Ezra is totally obsessed with food. He wants to eat all the time. He can't get enough into himself, and wants basically only carbs. However, he simply doesn't get enough nutrition from it because his digestion is messed up. So his body keeps demanding more. It's a vicious cycle, which is why the next thing I would recommend is putting your kid on a SCD, or GAPS diet immediately.
Monday, June 6, 2011
Call the Son-Rise Program immediately
There are several different treatments out there, so why do the Son-Rise program? Because it is the only program that focuses on the relationship between you and your child, and that gives the PARENTS the tools to cope. As I mentioned in Putting myself first, helping your child is all about your attitude. The Son-Rise program is the master of attitudes, beliefs, and hope. When I went to the Start Up program in the UK last January, it was the first time I truly felt hope for Ezra. Before it was desperation. The Son-Rise program gave me the tools to be OK with Ezra's diagnosis, to understand, and accept him. It was liberating, not to have to try and change him.
Kids in the Son-Rise program can recover completely. ABA therapies can work in helping your child manage tasks, but if you want your child to become a connected human being who WANTS to be a part of this world, this is the program to use. As evidence of this claim, the Son-Rise program was just voted the number one therapy tool in the Autism One Conference in Chicago 2011.
Now, not all kids will recover with this program. I'm not telling you to not consider other programs, but knowing what I know now, I wish I could go back and tell myself to throw all skepticism overboard, and run it while Ezra was even just one year old. It seems to me that the kids that recover completely are those who had intensive one on one therapy for 40-70 hours a week, for 2-3 years before they turned 6 years of age.
It might seem as if it costs a lot, but really, it's a drop on the hot stone compared what an ABA full time school costs, or even a DIR floor time school. I think the Rebecca School in NYC which would be one of my dream schools for Ezra costs $72,500 a year. Speech and occupational therapy twice a week costs $1200 a month. With this program, some of those therapies become superfluous. You will run it with the help of volunteers.
Before you skip over this blog post, reconsider giving it a try. Even if you don't have a full time program, the people at the Autism Treatment Center of America are the most loving and caring people you'll ever meet. Their attitude is infectious.
Raise some money to go the Start Up. We did it. It's doable. They also have scholarships.
http://www.autismtreatmentcenter.org/contents/programs_and_services/index.php
Kids in the Son-Rise program can recover completely. ABA therapies can work in helping your child manage tasks, but if you want your child to become a connected human being who WANTS to be a part of this world, this is the program to use. As evidence of this claim, the Son-Rise program was just voted the number one therapy tool in the Autism One Conference in Chicago 2011.
Now, not all kids will recover with this program. I'm not telling you to not consider other programs, but knowing what I know now, I wish I could go back and tell myself to throw all skepticism overboard, and run it while Ezra was even just one year old. It seems to me that the kids that recover completely are those who had intensive one on one therapy for 40-70 hours a week, for 2-3 years before they turned 6 years of age.
It might seem as if it costs a lot, but really, it's a drop on the hot stone compared what an ABA full time school costs, or even a DIR floor time school. I think the Rebecca School in NYC which would be one of my dream schools for Ezra costs $72,500 a year. Speech and occupational therapy twice a week costs $1200 a month. With this program, some of those therapies become superfluous. You will run it with the help of volunteers.
Before you skip over this blog post, reconsider giving it a try. Even if you don't have a full time program, the people at the Autism Treatment Center of America are the most loving and caring people you'll ever meet. Their attitude is infectious.
Raise some money to go the Start Up. We did it. It's doable. They also have scholarships.
http://www.autismtreatmentcenter.org/contents/programs_and_services/index.php
A view you'll need
2a) Thinking in Pictures and The Way I see it by Temple Grandin
A lot of what you will read when reading up on autism and treatments will be written by experts. Experts that is...who have never in their life been autistic, and can only provide the accumulative knowledge of observation, not introspection. If your child is autistic, I highly recommend reading these books, because Temple Grandin is autistic, and she is a phenomenal, brilliant scientist. Her insight has more to say than any so called expert. She has walked the walk! I was so much in awe of what she wrote, and it helped me see my own son in a very different light.
Here are the links to buy the book, or check it out at your local library.
The Way I See It!
Thinking In Pictures
A lot of what you will read when reading up on autism and treatments will be written by experts. Experts that is...who have never in their life been autistic, and can only provide the accumulative knowledge of observation, not introspection. If your child is autistic, I highly recommend reading these books, because Temple Grandin is autistic, and she is a phenomenal, brilliant scientist. Her insight has more to say than any so called expert. She has walked the walk! I was so much in awe of what she wrote, and it helped me see my own son in a very different light.
Here are the links to buy the book, or check it out at your local library.
The Way I See It!
Thinking In Pictures
Put Myself first, not my child
1. Put Myself first not my child
Trust me, nothing is as important as you. You make or break your child's future. That is the truth! You are responsible. It is an enormous responsibility, and sometimes seems like a burden too heavy for your shoulders to bare. When you look at it that way, it will be a terrible burden. Life will be hard. Rather look at it as your blessing, your opportunity to grow in humanity, humility, and understanding far beyond what others will experience. It also means, that if you are in charge of it, you need to be in top mental shape. You're in it for the long run.
I just recently spoke to a friend of mine who has a relative with a teen-aged special needs child. She apparently just tried to kill herself for the 10th time. In my opinion, if you tried that many times without succeeding it is because you want your current life to be over, not for actual life to be over. Anyway, it was a wake up call to me. I was so close to burn out. I don't exactly have suicidal ambitions, but sometimes I do cast my eyes to heaven and think 'Can I come home now'? In fact, I'm sure that's burn out. I yelled at my kids for the smallest things, I lost it all the time, with myself, with my husband, with the kitchen cupboard that wouldn't shut...I couldn't seem to find my smile, and I felt generally just down and depressed. Sometimes I don't know where I'll get the energy to face another day. I cried multiple times a week, sometimes a day. So how did it get to that? Talking to my friend about his relative helped me realize that all these years, I had been putting Ezra first. I have been denying myself needed time off. How could I take time off, when no one knew how to take care of Ezra, when leaving him meant he would scream for me for two hours, when I knew I was inflicting this burden on someone else? I couldn't even enjoy time off if I had it because I was so worried about him. He had such severe separation anxiety that if I left his line of sight he would start wailing. He did that for about 4 years.
Yes, no one can take care of your child like you can. But you cannot let that stop you from living your life. If I could go back I would tell myself, that he will be OK. And so will yours. It's hard at first, but find someone you trust to take your child off your hands for a couple hours a week, or even a day if you can. I know you're not sleeping well. I know he's probably up at night, and early in the morning. My life got so much easier to handle once I realized that he was not hurting himself at night, and that I could just put in the earplugs. It took me three years to let go and realize that I needed sleep if I wanted to cope.
You are the marathon runner. Your child is just hitched to you in a trailer, and you are pulling him. You need to stop and hydrate. Enjoy the scenery along the way, because otherwise you will never make it to the finish line. So find a hobby and do it. Breathe! Forget about your child for a few hours. Interact with others, find friends you can enjoy your hobby with. Nothing is as refreshing as human interaction. My hobby is horseback riding and my riding pal who knows about my situation usually amuses herself by counting the deep contented sighs I make when I ride through the forests. It's like the weight of the burden is lifted for a few hours.
This deserves a whole separate post, but if you are having a hard time it's because you are having a S.A.D. S.A.D. stands for sucky attitude depression, or sucky attitude day. I know from experience that the only thing that makes having an autistic child harder is having a sucky attitude about it, which leads me to point number 2. The Son-Rise Program!
Trust me, nothing is as important as you. You make or break your child's future. That is the truth! You are responsible. It is an enormous responsibility, and sometimes seems like a burden too heavy for your shoulders to bare. When you look at it that way, it will be a terrible burden. Life will be hard. Rather look at it as your blessing, your opportunity to grow in humanity, humility, and understanding far beyond what others will experience. It also means, that if you are in charge of it, you need to be in top mental shape. You're in it for the long run.
I just recently spoke to a friend of mine who has a relative with a teen-aged special needs child. She apparently just tried to kill herself for the 10th time. In my opinion, if you tried that many times without succeeding it is because you want your current life to be over, not for actual life to be over. Anyway, it was a wake up call to me. I was so close to burn out. I don't exactly have suicidal ambitions, but sometimes I do cast my eyes to heaven and think 'Can I come home now'? In fact, I'm sure that's burn out. I yelled at my kids for the smallest things, I lost it all the time, with myself, with my husband, with the kitchen cupboard that wouldn't shut...I couldn't seem to find my smile, and I felt generally just down and depressed. Sometimes I don't know where I'll get the energy to face another day. I cried multiple times a week, sometimes a day. So how did it get to that? Talking to my friend about his relative helped me realize that all these years, I had been putting Ezra first. I have been denying myself needed time off. How could I take time off, when no one knew how to take care of Ezra, when leaving him meant he would scream for me for two hours, when I knew I was inflicting this burden on someone else? I couldn't even enjoy time off if I had it because I was so worried about him. He had such severe separation anxiety that if I left his line of sight he would start wailing. He did that for about 4 years.
Yes, no one can take care of your child like you can. But you cannot let that stop you from living your life. If I could go back I would tell myself, that he will be OK. And so will yours. It's hard at first, but find someone you trust to take your child off your hands for a couple hours a week, or even a day if you can. I know you're not sleeping well. I know he's probably up at night, and early in the morning. My life got so much easier to handle once I realized that he was not hurting himself at night, and that I could just put in the earplugs. It took me three years to let go and realize that I needed sleep if I wanted to cope.
You are the marathon runner. Your child is just hitched to you in a trailer, and you are pulling him. You need to stop and hydrate. Enjoy the scenery along the way, because otherwise you will never make it to the finish line. So find a hobby and do it. Breathe! Forget about your child for a few hours. Interact with others, find friends you can enjoy your hobby with. Nothing is as refreshing as human interaction. My hobby is horseback riding and my riding pal who knows about my situation usually amuses herself by counting the deep contented sighs I make when I ride through the forests. It's like the weight of the burden is lifted for a few hours.
This deserves a whole separate post, but if you are having a hard time it's because you are having a S.A.D. S.A.D. stands for sucky attitude depression, or sucky attitude day. I know from experience that the only thing that makes having an autistic child harder is having a sucky attitude about it, which leads me to point number 2. The Son-Rise Program!
What to do when you suspect your child is autistic
This post is intended as a guideline, a starting point, perhaps even a lighthouse in your hurricane for you moms and dads who have just found out or suspect that your child is autistic, or simply different from the rest. No matter what the experts say of when you can diagnose a child, if you suspect your child is different, don't wait. Get a diagnosis YESTERDAY! Sign up wherever you need to. Waiting times can be quite long and the clock is ticking.
I started suspecting Ezra was different around 12 months old, and I asked my doctor who shushed my concerns at every appointment until we had wasted an entire year. And then he still wouldn't take action, so I contacted First Steps early intervention in Indiana where we were living and they confirmed my gut instinct. What I'm saying is, the same signs were there at 12 months that they later said made him autistic. Here are some of the things that made me think he's different:
At 12 months:
My oldest son Ezra is now 5.5 years old. He was diagnosed in January 2008 with being not typically developing, and probably autistic. The diagnosis of autism and ADHD has since then been confirmed. At the time of his diagnosis he was just about 2.5 years old. I have and still spend many nights lying awake, trying to drown out the regrets and the guilt that pound at my consciousness for not acting on my instincts, and doing more for Ezra earlier on. I am working hard on accepting that I did the very best I could, with the information available to me. I thought myself very well read at this point, because I spent the last 4 years reading up on treatments, protocols, personal recovery stories, biomedical treatments etc, learning and comparing all along. And then I joined a yahoogroup for parents of autistic children, and was blown away by how little I really know. Some of these mothers have been researching for 1-20 years. They are amazing. Anyway, if I had a time machine and could go back in time, these are the things I wish I had done right away. I hope this list helps some of you out there. And no matter how much you would like it to be, journey through autism is not a sprint. It's a marathon. You're in it for the long run. There are no quick fixes. So make peace with that fact. These suggestions are especially for ASD kids under 6 years of age. These might seem like weird suggestions, but honestly this is what would have helped me the most.
1. Put myself first, not my child. What I mean with this is get help for your child, but realize now that you need some you time to not let autism become your life. Why?
2. Call the Son-Rise program immediately This program will help your child and you actually accept and be happy with a diagnosis, and has the potential to totally recover your child from autism. Make a special playroom, and find volunteers to help you. Why?
2a.) Get an inside perspective into autism from a person who actually is autistic by reading Thinking in Pictures, and The Way I See It by Temple Grandin. Why?
3. This is a big one! Have your child tested for food intolerances and allergies and remove all foods immediately that he is intolerant to. Also, if you can afford it go organic, but at the very least, stop buying food with colorants, E's, or any type of preservatives. Your child's brain development is important and if the right nutrients are not getting to the brain but the wrong ones are, then it will make matters worse. Why?
4. Clean up the food! Start a vegetable/fruit/beans diet, SCD or GAPS diet now. Why?
4a. This actually goes along with 4 but I'll make it a separate point. DETOXIFY your household. Get rid of toxins such as your deodorants, shower gel, shampoo, fabric softener, laundry detergent, etc.! What the heck?
5. Put off having more kids, if you don't have more than one. Why?
6. Pick a method that will stimulate the cerebellum such as neurofeedback training, or brain balance program with your kid. Why?
7. Find a sensory integration therapist, and have them start working with your child. Waiting lists can be long, so get on one ASAP. Read all you can about sensory integration. Why?
8. Get rid of all electronics. No battery operated toys, no TV, nada. You think it helps you have a break, but really, it prolongs the problem and makes it much worse. Why?
9. Cancel all your plans and dreams for you and your child's future. Wasting thoughts on what could/should be will only make you miserable. You can either see autism as lemons straight up for the rest of your life, or you can make it into a lifelong supply of lemonade. It's your choice how you want to see it. Live in the moment. If you focus on what can't be, you will miss what can be. One of the most amazing things about autism is you get to learn and experience how truly amazing human beings really are, how magnificently capable they are. You can see it as an opportunity to celebrate a lot because each little step equals a major accomplishment, or you can also choose to be constantly miserable because your child is not doing what others seem to do without effort. Having an autistic child can teach you like nothing else how to be happy in the moment, choose your own happiness, defy the norm, love unconditionally, and inspire without demanding.
10. Find a pediatrician who is with DAN or with Dr.G, or someone who is knowledgeable about treating autism bio-medically. Some people see autism as a biomedical problem, and there are so many things you can do and try. Word of caution: stay away from chelation drugs, and drug treatments that will kill the gut flora. They tend to compromise an already strained immune system. A diet heavy in plant foods is the best way to chelate.
I understand that this list might be harsh to process. If I could go back and talk to myself, I would probably smack my past self and tell her to just get on with it. Coming to think of it, that's actually what I did, so perhaps I should stop feeling guilty? I didn't let his diagnosis stop me, and I don't think I'll ever give up fighting for him. But I would like to stop fighting myself. This is life now, and there is joy in it, if one doesn't waste too much time thinking about what could and should have been. It doesn't exist. All there is, is now!
Stay posted as I write the reasons for all these steps. I don't have the time to include them all right now, but promise to write them up in the next few weeks. Also, if you are one of my anonymous readers, and have something to contribute to this subject, something you wish you had done, or would like to ask me a question, please put it in the comment section.
I started suspecting Ezra was different around 12 months old, and I asked my doctor who shushed my concerns at every appointment until we had wasted an entire year. And then he still wouldn't take action, so I contacted First Steps early intervention in Indiana where we were living and they confirmed my gut instinct. What I'm saying is, the same signs were there at 12 months that they later said made him autistic. Here are some of the things that made me think he's different:
At 12 months:
- He never turned his head when I called his name. Typically developing children will turn their head at about 8 months, even if they don't look in the right direction.
- He didn't imitate anything, no gestures, no sounds
- He rarely looked at me
- He didn't babble, talk, or interact with me
- He still had no words, he started screaming a lot and having tantrums
- He would engage in repetitive behaviors such as dumping out water glasses, staring at the water running down, and couldn't follow any simple directions like "give me the cup"
- He didn't point, or seek shared attention (like showing me a new toy)
- He had a lot of separation anxiety that never went away
- He didn't point at anything or take my hand to show me things
My oldest son Ezra is now 5.5 years old. He was diagnosed in January 2008 with being not typically developing, and probably autistic. The diagnosis of autism and ADHD has since then been confirmed. At the time of his diagnosis he was just about 2.5 years old. I have and still spend many nights lying awake, trying to drown out the regrets and the guilt that pound at my consciousness for not acting on my instincts, and doing more for Ezra earlier on. I am working hard on accepting that I did the very best I could, with the information available to me. I thought myself very well read at this point, because I spent the last 4 years reading up on treatments, protocols, personal recovery stories, biomedical treatments etc, learning and comparing all along. And then I joined a yahoogroup for parents of autistic children, and was blown away by how little I really know. Some of these mothers have been researching for 1-20 years. They are amazing. Anyway, if I had a time machine and could go back in time, these are the things I wish I had done right away. I hope this list helps some of you out there. And no matter how much you would like it to be, journey through autism is not a sprint. It's a marathon. You're in it for the long run. There are no quick fixes. So make peace with that fact. These suggestions are especially for ASD kids under 6 years of age. These might seem like weird suggestions, but honestly this is what would have helped me the most.
1. Put myself first, not my child. What I mean with this is get help for your child, but realize now that you need some you time to not let autism become your life. Why?
2. Call the Son-Rise program immediately This program will help your child and you actually accept and be happy with a diagnosis, and has the potential to totally recover your child from autism. Make a special playroom, and find volunteers to help you. Why?
2a.) Get an inside perspective into autism from a person who actually is autistic by reading Thinking in Pictures, and The Way I See It by Temple Grandin. Why?
3. This is a big one! Have your child tested for food intolerances and allergies and remove all foods immediately that he is intolerant to. Also, if you can afford it go organic, but at the very least, stop buying food with colorants, E's, or any type of preservatives. Your child's brain development is important and if the right nutrients are not getting to the brain but the wrong ones are, then it will make matters worse. Why?
4. Clean up the food! Start a vegetable/fruit/beans diet, SCD or GAPS diet now. Why?
4a. This actually goes along with 4 but I'll make it a separate point. DETOXIFY your household. Get rid of toxins such as your deodorants, shower gel, shampoo, fabric softener, laundry detergent, etc.! What the heck?
5. Put off having more kids, if you don't have more than one. Why?
6. Pick a method that will stimulate the cerebellum such as neurofeedback training, or brain balance program with your kid. Why?
7. Find a sensory integration therapist, and have them start working with your child. Waiting lists can be long, so get on one ASAP. Read all you can about sensory integration. Why?
8. Get rid of all electronics. No battery operated toys, no TV, nada. You think it helps you have a break, but really, it prolongs the problem and makes it much worse. Why?
9. Cancel all your plans and dreams for you and your child's future. Wasting thoughts on what could/should be will only make you miserable. You can either see autism as lemons straight up for the rest of your life, or you can make it into a lifelong supply of lemonade. It's your choice how you want to see it. Live in the moment. If you focus on what can't be, you will miss what can be. One of the most amazing things about autism is you get to learn and experience how truly amazing human beings really are, how magnificently capable they are. You can see it as an opportunity to celebrate a lot because each little step equals a major accomplishment, or you can also choose to be constantly miserable because your child is not doing what others seem to do without effort. Having an autistic child can teach you like nothing else how to be happy in the moment, choose your own happiness, defy the norm, love unconditionally, and inspire without demanding.
10. Find a pediatrician who is with DAN or with Dr.G, or someone who is knowledgeable about treating autism bio-medically. Some people see autism as a biomedical problem, and there are so many things you can do and try. Word of caution: stay away from chelation drugs, and drug treatments that will kill the gut flora. They tend to compromise an already strained immune system. A diet heavy in plant foods is the best way to chelate.
I understand that this list might be harsh to process. If I could go back and talk to myself, I would probably smack my past self and tell her to just get on with it. Coming to think of it, that's actually what I did, so perhaps I should stop feeling guilty? I didn't let his diagnosis stop me, and I don't think I'll ever give up fighting for him. But I would like to stop fighting myself. This is life now, and there is joy in it, if one doesn't waste too much time thinking about what could and should have been. It doesn't exist. All there is, is now!
Stay posted as I write the reasons for all these steps. I don't have the time to include them all right now, but promise to write them up in the next few weeks. Also, if you are one of my anonymous readers, and have something to contribute to this subject, something you wish you had done, or would like to ask me a question, please put it in the comment section.
Micah's mini lecture
After six months of trying to find Ezra a school, we've finally found one that is at least willing to see Ezra in person (rather than making all sorts of assumptions based on the label of autism and a low IQ test score). I really hope it works out for Ezra. Anyway, he's very excited to go. His 3 year old brother Micah who has been going to a Dutch playgroup every morning for a year had some words of advice for him.
Micah: You gotta learn friends, Ezra.
Ezra: No, you have to learn friends.
Micah: No, I'm not autistic. You are, and you gotta learn friends. You gotta learn to calm down. And you gotta look in the eyes VEEERY slowly. And when you say something, you gotta say it in Dutch, 'cause kids speak only Dutch here. No one will understand English.
I LOVE IT! Micah totally gets all the things we keep on teaching Ezra. When I look at him he says: good job looking in my eyes mom.
PS: By the way this is a word for word rendition.
Micah: You gotta learn friends, Ezra.
Ezra: No, you have to learn friends.
Micah: No, I'm not autistic. You are, and you gotta learn friends. You gotta learn to calm down. And you gotta look in the eyes VEEERY slowly. And when you say something, you gotta say it in Dutch, 'cause kids speak only Dutch here. No one will understand English.
I LOVE IT! Micah totally gets all the things we keep on teaching Ezra. When I look at him he says: good job looking in my eyes mom.
PS: By the way this is a word for word rendition.
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