Sunday, July 13, 2008

If you know one child with Autism.....You know one child with Autism.

I have had a nagging thought to write about my personal experience with Autism, but keep putting it off because it is so personal. You see, as the saying goes, If you know one child with Autism, you know one child with Autism. In a nut shell, Autism is just a label, a label that means that they don't know what is wrong exactly, just that the brain doesn't work right. There is no blood test that says, "yep, he has autism!" It is a term created in the last several years to diagnose something that isn't in the books. Because of this , there are so many differing opinions on what to do to help these little ones and how to stop if from happening. Each child presents a different case. Each one has difficulties in different areas. It is a lesson in patience , trial and error that helps you understand what your little ones need. I know that many of you have a child with Autism and if not, you probably know someone who does. I want to write a little about what I have learned, about what everyone needs to know that will help in all cases and why I feel that Autism has been a profound blessing in my life.
I have told a bit about my sweet little Tate on my post "My Life" and other posts so sorry if I get redundant. I will try not to repeat too much, but I need to give a little detail so you can see where my journey has started. At about a year to 16 months Tate started to get really angry, really unhappy and he stopped progressing. He started lining up toys non stop and had to have routines. I really suspected that something was wrong as he wasn't walking or talking. Of course Dr.'s told me that I was just a neurotic mom but mom's know. My suspicions were confirmed in April of 2007. I started researching everything I could. It is such a different world and everything I was reading was talking about the traits of the Autistic child but not much about their world. What was Tate feeling? I was truly blessed to experience a little of what he must feel like during this month of his diagnosis. I was going through a home remodel for the whole month where my house daily was filled with every toxin available from wood glue, cement dust and paint fumes. Now add total stress from Tate and no sleep whats over and I started to go nuts. Really. I thought I was loosing it and I guess I did. I could not focus, I could not feel; like my senses were numb. I had anxiety, I couldn't eat, I couldn't sleep. I had to pinch my self to feel like I was in my body. I constantly felt like I was floating. Through eliminating toxins I was able to clean out my body and to regain the mind I had before. It was a miserable and frightening experience most things, there is a purpose. It dawned on me that my little precious Tate felt the same way. His body was under attack from toxins and chemical imbalances that made him feel the same way. I knew how scared and miserable I felt and did not want my little guy to feel that way in his life. I would now pour my time to help figure out how to get him out of this world that he was trapped in.
Now to present time. I sit in the waiting room at his daily therapy sessions. I watch most of the kids come out of the rooms to their moms with glassy eyes and no eye contact. The therapist grabs their hand and turns their head and tells them to look at mom and say "Hi mom." The children will respond in robot fashion "say hi mom". They are not really there. They are trapped. They go to therapy and learn to spit out repetitive phrases but they cannot think beyond this. This is where I need to interject my thoughts. My little Tate comes out laughing, running to me with perfect eye contact, with a big hug and eager to tell me all that he did. He cannot form the words yet, but he is there. There is no mistake about that. He is now part of the world. He has no problems with sensory issues or stimming, he is there. He loves life, he is happy. This has been a long process to get him there as he once was the glassy eyed kid. But, here is the difference and my testimony; you cannot put a band aid on autism with therapy and make the child be cured. You need to go to the root and fix the problem. You need to look inside. You need to understand what went wrong. If your goal is to get a repetitive phrase out of your child, then therapy will be the only thing you need.Therapy is wonderful and necessary but cannot be the only thing you do. If you want your child to feel good, to really mean it when he says "mommy, I love you" without any prompting, you need to do the work. Yes, it is really hard. Yes, I have many many days that I want to throw in the towel but then I remember how I felt. I remember that I never want him to feel that way. I don't care if he is ever "normal", I just want him to love life like I do and not to be held back from anything that he wants to do.
How? You MUST start with nutrition. I will be happy to help anyone with this if you email me because it would take way to long to post. I have my little guy on a gluten and dairy free diet which has worked miracles. But, there is so much more. You have to get them the good things too not just avoid the bad things. I know so many who say they have tried the diet for a month and didn't see a difference but you need to give it a good six months. The body needs to be cleaned out and this can take a long time. The stomach needs to be healed. I had Tate tested for allergies and he was allergic to all kinds of wacky things. I eliminated everything and later could add a few back in. I have him on B12 shots and enzymes from the help of a great Dr. Now, I know many of you have older children with Autism and I know a strict diet is impossible at this stage. I worry about that when Tate is older as every year it gets harder. But, you can start with getting rid of the junk. NO food dyes, nothing artificial, low sugar, etc. It will help. If you don't clean out their body, they cannot feel good, they cannot function right. Get a Dr. that will support you with this. Yes, it is very expensive. We can only do what we can but we must try and we cannot give up. Remember, these little ones are born fine, autism is something that happens to them. It can be reversed if you catch it early and do everything you can. I would love to help anyone. I have great recipes and know where you can go to get gluten free foods. Please feel free to email me with a number if you want. I do not judge anyone as I know that our learning process takes time. We are all in different places and have different struggles. I hope that we can all be non judgemental especially to the mothers who have autistic children. I used to look at moms in the stores with children screaming uncontrollably like crazy monkeys and think, why can't she deal with them? When I had Tate and he would get into one of these tirades, I felt ashamed that I did not give those mother's slack for their trials, for the chance that maybe they had a child too with autism that could not simply be calmed. I have a favorite bumper sticker that reads, "My child has autism.....what the heck is wrong with yours." I wish sometimes I could post this on my forehead for those days where I look like the out of control mom with the out of control child. If they only knew. Those days are getting few and far between for me now. I still have plenty of bad days but there are now more good. I am so blessed to have caught this early as digression gets worse with a later diagnosis. I wish I started the diet when my first mommy instincts kicked in. It is all worth the hard work. Pay now or pay for the rest of your life. In the end, I still feel that Autism has been truly a blessing in my life. Tate is a special spirit that didn't need to be tested like we did on this earth. I am the one that needed to be tested. I hope and pray that I can pass the test with flying colors. I want Tate to know that I did everything I could for him. I love him to pieces. He is my little angel. Even at the end of the really hard days, I still wouldn't change anything. he has taught me and my family more that any one else. That is my two cents....maybe a little more. Sorry for the deep thoughts that never end but this is for those who asked.


Mind Body Shop said...

You don't need to outdo the competition. It's expensive and defensive. Underdo your competition. We need more simplicity and clarity.

Tracey said...

You are an amazing mother. I commend you for your consistent efforts - I know it is not easy to have your child on such a strict diet. I have struggled with Cannon's diet since we have been out of town & I can tell a big difference in his behavior. There is a special place in heaven for those mom's who are raising children with special needs! Tate is very lucky to have you as his mommy!

Lori P said...

I am touched by your post. Tate is blessed to have such a great Mom. You have opened up his world.
Thanks for your sweet testimony, Shari.

Jeremy and Anna Lisa said...

I'm so interested in the nutrition/body connection and appreciate being reminded to keep on top of that, though it's difficult, it is worth it! Blessings to your family Shari and thanks for saying good to see what you're up to.

Anna Lisa

Carrie said...

thank you for sharing! it's moms like you that give other moms the strength to continue in the fight for our children!

Abby Runyan said...

AMEN!!!! Loved this post, Thanks.

Mind Body Shop said...

Smile, it's free therapy.

kara elmore said...

Thank you for being a mom who goes the extra mile. It IS hard work to go above and beyond. But's it's worth it! It's wonderful to be reminded of why we're moms and that our little ones count on us!

Kerri said...

Wow, I love this post!! When I was pregnant with my first child I subbed a lot and since I had special ed background I always was put in the Autistic classroom and it was hard but more so, it broke my heart. I am so glad Tate has you in his life and that you are able to do so much for him. What a sweet post!

Laurie said...

Tate is one lucky kid to have you for a mom!

Megan said...

I am the Child

I am the child,
All the world waits for my coming,
All the earth watches with interest to see what I shall become.
Civilization hangs in the balance,
For what I am, the world of tomorrow will be.

I am the child,
I have come into your world,
About which I know nothing,
Why I came I know not;
How I came I know not;
I am curious;
I am interested.

I am the child,
You hold in your hand my destiny,
You determine, largely, whether I shall succeed or fail.
Give me, I pray you,
Those things that make for happiness.
Train me, I beg you,
That I may be a blessing to the world.

Not sure who wrote this poem but I LOVE it and it makes me cry nearly every time I read it! Our children are all precious gifts given to us. They rely on us, are counting on us and need us to be there for them. Tate is very lucky to have a mom like you Shari! Keep it up. You are an inspiration to us all!

ALYSSA said...

Hey sis. Goodman, i just wanted to say how much of an amazing example you are to me! I miss you in young womens so much! And if you ever need a break i would be more than happy to play with Tate and/or any of your kids! It would be so much fun!

DK said...

You don't know me, I've posted once before and I have been truly inspired by your blog. I love reading it and have been touched by your persistence to live a better life. You have blessed more than you know :).