What I Wish They Knew

When your child starts to fall behind the averages of his peers, it can be alarming.  You may start to worry if and when the child will catch up.  In the event your child is diagnosed with autism, you will look for therapy in hopes to catch him up to what is appropriate for his age level.   And although you may see progress over the months, the rate of progress can be slow.
When your child is around age two, he may not look so different from other two-year-olds.  Maybe he doesn't talk, and runs around wildly in circles, but he is still at the adorable toddler stage, where most on-lookers smile warmly in an understanding sort of way.  (Sometimes you get the "you are a horrible parent" looks, but hopefully not as often.)
As your child grows and reaches age 4, he may be in a special needs classroom, where he may seem to be one of the higher functioning.  As a parent, you focus only on his gains and progress and forget about "the gap".
The gap is where your child is compared to where other children his age are developmentally.  When they are cute, silly, kindergartners, their delays are more prominent, but still the child is mostly quirky and enjoyable and their behavior is more acceptable.
The gap becomes more apparent by about third grade.  Your child may have lost the chubby cheeks of their youth, but still love to play with Thomas the Tank Engine, while the other boys and girls in the regular education classrooms are looking for boyfriends and girlfriends.

I've watched my son progress, but as the years pass by the gap gets larger and more noticeable after a brief introduction.  It is hard for him to read, and people are not quite as loving and understanding to a fifteen year old with pimples and a hint of a moustache.  They act uncomfortable.

Even the nicest people, who would never be unkind....are sort of scared, and don't know what to say or how to react.  Tristen doesn't notice it, but I do....and it breaks my heart. 

This is what I wish they knew:

Include him, while understanding that in his attempts, the task may take longer and may not be done quite right.  There may be some instances where things have to be done quickly and/or perfectly, but most of the time, these are only perceptions in our own minds.

Be flexible and understanding.  Give him the choice to participate...gently encourage him to do so, but leave it ultimately up to him.

Remember that in his mind he is still a young child.  Think about how you would treat a younger sibling or cousin.  This is difficult as he grows older on the outside, but not so much on the inside.

Understand that he does not make eye contact or respond to questions easily, and it will take time for him to be comfortable and do so independently.  Don't let this discourage you from communicating!  He likes being noticed, but is embarrassed by it at the same time.

Don't laugh at him when he is being serious. If he is trying to tell you something and mixes up his words, or if he is reading...please be attentive and don't laugh.  There are times when he is silly and having fun, and it would be appropriate to laugh with him, just not "at" him.

I sincerely feel people just don't know....no one has explained to them how to talk to a young adult with autism. We need to get the word out, because they are going to need the experience.

Clarification

I feel I have to clarify.
I am not a conceited person.  I am quite the opposite.  I have a difficult time admitting I do ANYTHING well....I constantly self evaluate and self criticize.
If my children make it into functioning adults who contribute to society, it will be in spite of me.
However, I would be remiss to not say my unique parenting and parenting choices have not helped my children thus far.  I also can not deny being led by my Father in Heaven.  It is as true to me and as deep and real as my love for my children.
I couldn't have accomplished what I have without Him.  I would not have the gift of instinct to go down the right paths for my family's health.  I would not have the blessing of seeing autistic children's strengths and the unique ability to understand how to teach them.  I see things and understand things other educators don't see.  I owe it to God and can not take credit for it with a clear conscience.
I hope and pray the things I have learned will be useful to other families facing the same challenges.

Shoulda Woulda Coulda's

In typical "Meadow" fashion I have been continually going over my interview with the girls from Truther Talk blogradio.
Before the interview, I prepared.  I "met" with hosts April Boden and Virstyne Henry via Skype...I've known April for a few years now, but it was nice to get reacquainted.
I went over key topics in my mind.  I wanted to be sure I was mentally prepared for topics.  I went over books, and essays, and articles.
In the time between the pre-interview and interview, my health plunged quickly, spiraling downward and seemingly out of my control.  I seriously contemplated cancelling, but then I would have to admit what was happening, and that was too scary.  I chose to fight to regain my health.  (That's another story)
We made a few scheduling changes, and by none other than the grace of God, I regained my strength and ability, for the most part, to participate in this interview.
Although I've been doing this blog for quite a few years, and divulge personal stories, sadness, and triumphs.....I was most worried about how the listeners would evaluate me.
First thing to hate (on my list), is my accent.  I HATE talking like a Wisconsinite...truly...and am more than happy to chime in with the y'alls down here in Texas.  I worried about my pronunciation.  I was worried if I would say "steeevia" or  "steh-via".
Then, I worried I would go off topic, or forget to completely answer a question (which I did).
I worried I would lose my train of thought (which I did) and forget my point (which I did).

Without a degree or career-years under my belt, I also worry people will say I lack credibility, which is what really gets to me. 

I have been doing this autism thing for 15 years.  Me.  Not therapists, not ABA.  Not books, not groups.  Me.  And I think Tristen is an outstanding young man. No sitters, no respite.  And very little spousal support.
A blend of spiritual guidance, and daily non-stop practice with my own autistic son, made me an excellent paraprofessional because that experience gave me a unique way of understanding autistic children.  This can not be learned in an autism training class and does not come with a degree to hang on my wall.
It's just me.  Doing what makes sense.  Caring endlessly for children with autism.  And giving it my all.
I am so blessed to have Truther Talk air some of my personal journey.  I feel guilty that I said the wrong things or should have said more...or less....but the time to worry is over.
The truth is, these are the facts of my life, whether interesting or not....it is what it is.  I share them in hopes of helping others.
So, I have decided to launch a new blog....
I want to keep true to "Autism and Health".  I want it to be a place where caregivers can go and get ideas of different methods for helping autistic children.
"The Green Bean Girl" is going to be more about me, my political opinions, rants, irritations, or questions in general.  Also, I am going to track my health journey. 
I will continue to keep up with Tristen's health, and in all reality, it is intertwined.  It is hard to take "Meadow" out of autism, because so much of who I am is because of autism.  But I feel strongly I should have a more neutral blog for people who want to help autistic individuals, and I don't want them leaving the site as soon as they see something political.
Anyone interested in both can find more at http://greenbeangirl34.blogspot.com/
And check out my interview with the lovely ladies from Truther Talk on 11/6 !!!
 http://www.blogtalkradio.com/truthertalk

"Is that what happened to me?"

   Those of you familiar with my blog know I don't treat Tristen like he has autism.  He and his brother have the same expectations.  We don't excuse him from responsibility.  When Tanner has asked us questions about his brother, we tell him he has a more difficult time learning than he does.  We don't go into detail...ESPECIALLY causation.  It's a tough enough world out there for an adult who proclaims their child was vaccine injured.  You have to have the facts to back up your statement, and my kids don't remember all the facts.  They know we don't get shots because the ingredients in them are toxic, and their immune systems are not strong enough to combat them.  This eases their minds and they feel good about it.
    But I've never said, out loud, in front of my autistic son that his brain was damaged by a vaccine.  I never explained the exact ingredients in vaccines that are dangerous.....until yesterday.

   The boys are studying the periodic table in science class.  Tanner is telling Tristen how he had to do a report last year in school on Mercury.

"Yeah, supposedly the mercury in thermometers was poisonous, so they stopped using it.  I couldn't even read a lot about it or find pictures of anything interesting because everything was blocked on the school's computer.  I don't even know if Mercury really is poisonous."

I explained to him the history of the men who used to make hats out of leather.  I told them how they used mercury to treat the leather before they sold it to people.  I asked them if they remembered the "Mad Hatter" from Alice in Wonderland.  They said they did.  I told them that was where the saying came from...."Mad as a Hatter" because the "Hatters" or the men who made hats started acting silly and goofy.

Tristen says..."Wait, Mom....is that what happened to me?"

How do you answer that?  Can I be sure it was the mercury in the vaccine?  Or was it just the vaccine in general given at two days old that caused his encephalitis?  Or was it a combination of having the vaccine at two days old and then nursing from a mother who had just received the MMR?  We will never know for sure, all we DO know is the symptoms of regression were clear after that vaccination.

I said,  "Do you think you are silly like the Mad Hatter?"

"Sometimes." He said very seriously....he stared to the side....deep in thought.

I wish I could give him a definite answer.  In my mind, it doesn't really matter exactly, because we are healing him now the best way we know how. 

How will this effect his self image? 

After leaving the conversation alone for a little bit, I came back to talk to him about it...just the two of us.  I told him how proud we were of him for doing so well in school.  I told him he was very smart and a very good boy who made choices to be a good person every day.

I asked him if he had any worries. 

"Is there anything you are worried about, Tristen?"

"Do you worry about being different than other kids?"

He told me he liked Legos.  I said that lots of kids liked Legos.

Then....very quietly....he said, "I'm worried I will grow up and have a brain like Dad."

My heart stopped.

"Honey, you don't have to worry about that.  Dad's brain changed from the war....you aren't going into the army and going to war, are you?"

"Nope."

"See....so no more worrying, ok?"

"Ok, Mom"

When we think these special kids don't understand....sometimes they understand what they need to understand....and sometimes it's deep and profound. 
He knows his Dad's temperament has changed since being in Iraq, and he knows he doesn't want to be that way.  And somewhere...deep down....he knew Mercury had affected him....even though he didn't know how.
Now that's a smart kid :)