Monday, March 19, 2012

Autism

It's taken me many years to decide how to address this issue and write this post... I can probably do it now because I finally know what I am dealing with. I decided to write this instead of wearing a name tag that says, "Hello, my name is Heather. My son's name is Thomas and he does things that are socially inappropriate. He has autism."

After yet another weekend of stress and embarrassment after taking our son to social events, John and I had a long talk. We came to the lightbulb conclusion (at least for me) and it's helped me so much just these last few days. It's this:


Autism= Social Disability

It's taken me many years to come to grips with, but it is what it is. My son has a social disability. No one wants to be told that their perfect looking child is less-than-perfect on the inside.

A social disability is very hard to deal with, it's widely misunderstood and it affects every part of your life if this is what you are afflicted with. Thomas doesn't look disabled (in fact, he's above-average handsome, in my humble Mom opinion :)- so it's hard for people to understand why he sometimes acts so different when he looks so "normal."

Here's a little history of our Thomas Christian Ryan:

I remember distinctly the moment that the Spirit whispered to me that our child would have a disability. We were in our home in Herriman and I was 6 months pregnant with Thomas. My immediate thought was, "He has Down Syndrome," and with that an impression that I needed to be brave. When Thomas was born a few months later and he obviously did not have Down Syndrome, I dismissed the prompting as my own thought. No disability here!

Thomas was a very easy baby. Maybe a little too easy. He was calm and many times non- responsive when he should have been otherwise. He loved our family and his sisters, but he didn't coo, gurgle, get excited, and socially engage like our daughters did as babies.

As time went on, there were more warning signs that something was not quite right. Thomas was not interested in reading or playing with friends. He also didn't talk or babble for a long time. When he was about 2 years old, the only word he got excited about saying was "dig, dig" when he saw big tractors or trucks working on the roads.

We enrolled Thomas in an early childhood preschool at 2 1/2 years and figured that he was just developmentally delayed. A specialist came to our home once a week and gave me pointers on how to play with Thomas so that his vocabulary would grow. I thought that if I read to him more, played with him more and worked with him hard enough and long enough that he could "catch up" with his peers. We bought him a little backpack when he was 3 and sent him on the school bus to attend preschool 2-3 times a week. He was in a class with other children with developmental delays and also with typical developing children as the role models for the delayed children.
When Thomas was 3 1/2 years old, John's parents helped us get a speech pathologist that came to our home. This was a big breakthrough, as she taught us to teach Thomas to ask for things with his words, instead of yelling or pointing to get what he wanted. She also introduced us to the book "1-2-3 Magic" which changed our lives forever discipline-wise. We still use the techniques in 1-2-3 Magic, it's saved my sanity on multiple occasions. (I highly recommend!)

The speech pathologist also taught us the importance of teaching words to Thomas one by one by one. We remember playing a game with Thomas and his sisters passing the ball back and forth between us saying "ball" "ball" "ball" over and over again. Thomas had flashcards, worksheets and we checked out "Signing Time" videos from the library to let Thomas hear individual words repeated and repeated and repeated.

Gradually, Thomas started to say more and more words and even some phrases. We were excited about his progress and I kept track of everything in a journal.

We changed speech pathologists after awhile and went to the IHC Center off Bangerter Highway when Thomas was 4 years old. This time, Thomas had a young man as his pathologist and he was great! We didn't have lessons with him very long, but we were there long enough for this man to teach me the power of being positive with Thomas. If I pushed him too hard or corrected too much, Thomas would shut down in frustration. This was another huge 'ah-ha' moment for our family in learning how to work with Thomas. He thrives on the positive....just like the rest of us.

After talking with John's Dad about Thomas later that year, we realized that we finally had to consider that Thomas had autism. All of Thomas' social interactions and relationships were a struggle for him.

Definition of autism:
Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills.

We also realized and learned that the "disorder" of autism is a HUGE spectrum. If you know one person that has autism, you may think you know them all. Everyone that has autism is unique and individual and it affects different people in different ways. We started to visit with an autism specialist in 2009, but our progress in finding and finally getting a diagnosis was stalled by our economic situation. We couldn't afford to pay someone hundreds (maybe thousands) of dollars to tell us what we already knew deep inside.

Thomas started Kindergarten while we lived in Ogden and he was surprisingly (at least to me) very well behaved. I think he was somewhat in a state of shock and was very quiet in his class. He worked with his resource teacher to learn his letters and begin sight reading. We were very happy with his end-of-year Kindergarten program when he stood on the stage with his class and sang every word of every song!

This brings us to our time in Texas. Our move to Texas the following summer was a rock-bottom time for Thomas. He hated the change and turned into a whining, screaming, tantrum-throwing wild child. The vice-principal at Thomas' school called us on a frequent basis for the strangest of behavior problems. John and I would often look at each other is disbelief when Thomas would literally freak out over the smallest problems and go stomping and screaming up to his room. We were beginning to feel desperate to find answers for our son.

This is when a literal miracle took place in our lives. I was assigned to visit teach with my Bishop's wife. On our first visit together, the lady we went to see had multiple health problems. Marianna (the bishop's wife) started to tell her about how her husband had helped people improve their health through changes in their diet. Marianna's elderly mother had been in the hospital with a heart function rate of 10-15%- barely staying alive. She said, "My husband treated her with a change in diet and her heart recovered at a 90% function rate. No one could believe it and no one knew how she did it." Wow, my jaw about dropped at that point and I wanted to find out more.

I asked Marianna if her husband treated children and she said that he did. I told her my son had 3 health conditions: asthma, ezcema, and autism.

We wanted to start talking with our bishop, Dr. Taylor, about Thomas- but we still had one huge obstacle ahead of us- the usual: $$$.

One day, Marianna sent me an email about possibly having Dr. Taylor advertise his food storage business on Savvy Sister. I asked if we could trade advertising in order to get some consultation work from Dr. Taylor- a door opened for us!

To make a long story short, we decided to move forward with some testing for Thomas. The most significant of which was a hair minerals test. The results from the test showed that the sodium and potassium levels in his body were very high. Based on the results of the minerals test, the lab that ran the test gave us a printout of foods to avoid and foods to include in Thomas' diet. The most significant food to avoid from the list was wheat and white flour products.

I didn't know what this change in diet would do for Thomas, but I felt that it was the right thing to do. What choice did I have? I had to try something, he was suffering and he was acting out in such inappropriate ways that we were completely at a loss as to how to help him.

We had a lot of changes to make, but we started by cutting the wheat and white flour foods out of his diet. We packed a piece of ham in his lunch instead of a sandwich. I learned how to make gluten-free pizza dough and cookies. No more cereal for breakfast and on and on with the new changes. We were only 5 days into this new diet when we started to see a change in Thomas.

The most sudden change we noticed was on a Sunday. I asked Thomas to take a shower to get ready for the day, expecting the full-fledged tantrum he ALWAYS gave me when I asked him to take a shower. Instead, he said, "Okay," and walked over to the bathroom.

I thought, "Was that my son?"

After church on the same day, Thomas was called on to say the family prayer. He said the sweetest, most sincere prayer I've ever heard him say including asking that "the Holy Ghost will help us everyday." Again, this was extraordinary for Thomas and I started to get so excited. From a little boy that had a hard time speaking in complete sentences, this was HUGE.

The next day at the breakfast table, Thomas looked at me and said, "Mom, what does 'serve God' mean?" I remember Rebecca and I looking at each other and just thinking this was the cutest thing in the world. I answered his question and thanked Heavenly Father silently for the changes we were seeing in our son. This truly was a miracle in our books.

During the same months as we were learning more about what foods Thomas' body could and could not process, he was being observed and tested at his elementary school in Texas. Our school district could pull in child psychologists and make a diagnosis without the parents having to pay a boat load of money for it. Again, this was a big blessing to us. Thomas was eventually given the diagnosis of High-Functioning Autism.

We moved from Texas before the school year was over, in April 2011. Before we did, I had a meeting with Thomas' teachers and administrators one last time. I remember specifically his classroom teacher and vice-principal telling me they couldn't believe the change they had seen in Thomas the last few months. The vice-principal no longer had to call us about his misdeeds, either. (Phew!) Instead, she said that Thomas stopped her in the hall to talk to her. HE stopped her and HE started the conversation. In the past, she used to be happy if he would respond to her at all if she said hello. Thomas also lost the autistic tendency to constantly "drum" on himself, his desk, the table, anything around him.

When we moved back to Utah last year, I was so nervous that Thomas would have another "change attack." (Children with autism love routine and despise change.) We were very excited when he seemed very happy and pleased to be back! He did very well the last month of 1st grade at his new school here in Eagle Mountain. Hurray! His Lego video shown here occurred when we first moved back to Utah. Speaking in complete sentences like he does in the video was something he could not do just a few months before.

Then, something strange happened a few weeks later. Thomas started to act angry again and even lashed out at a new friend when a misunderstanding occurred. I couldn't figure out what had happened. And then, we finally traced it back to..... a cookie. It's true, he ate a cookie at a new friend's home and it changed my son's attitude THAT much. We couldn't believe it. Thomas truly has an enemy in wheat. Truly.

Thomas did recover from the slip-up on his diet, but Thomas still has autism. Again,


Autism= Social Disability

This means that Thomas does not naturally know the appropriate things to say and do in social situations. He has to be taught these skills in the same manner that we taught him to speak. Over and over again, one social skill by one social skill at a time. It's a painstaking routine, but I know that it will be so worth it.

While Thomas is learning to behave in appropriate ways (we have family members and his teachers working on several social goals), do not be shocked if you see my son:

- Yell at his siblings or parents
- Sing Weird Al song lyrics during Sacrament Meeting
- Call out mean names
- Dance on his chair at a restaurant
- Get angry at the drop of a hat
- Laugh at others when they get hurt or get in trouble
- Not look you in the eye when saying hello
- Offend almost every person that's offered him friendship
- Purposefully knock over his sister's drink at the dinner table
- Run away from "fun" events like the circus or snow tubing because he's overstimulated
- I could go on and on here, but I think you get the picture

While we do teach and correct and try to help our son to act appropriately every day, getting angry at him for every incorrect behavior would be like getting angry at a person in a wheelchair because they cannot walk. Or telling a blind person to "get over it." Ridiculous, right? This is the same as telling a person that has autism to "snap out of it" or wonder what in the world their parents are doing wrong or why they cannot keep their child under control. I try to remind my daughters when they get frustrated with Thomas that he most likely did not choose to have autism when he was born. I remind them to think of the way they would feel if they were the ones born with this disability. I think we all agree that it would be very, very hard to be in Thomas' shoes.

While our cute son has brought us disbelief, embarrassment and sometimes disappointment, he has also brought our family unbelievable moments of joy, happiness and satisfaction. Sometimes he is so adorable and calm and sweet. I want to squeeze and kiss and hug him when he's in this frame of mind and he'll squeeze and kiss and hug back. I can hardly believe this is the same person. (He sometimes has the nickname of 'Jekyll and Hyde' at our house.)

When he says a new phrase I've never heard him say before, I want to jump for joy. When he plays with his sisters in a calm, relaxed manner, our whole house is at peace. I want to shout 'Hallelujah' when he say 'thank you', or 'please' or the most rare 'I love you' unprompted.

When I think about the things that Thomas has taught us, I think of the scriptures. Humility? Yes. Patience and Temperance? Oh, yes. Diligence, Hope, Faith, Love? Of course.

Sometimes people suggest that Thomas was sent to our family because we would be good to him and be willing to help him. While this may be true, I tend to believe that we need Thomas more than he needs us for all that he is teaching us.

One day, Thomas will be completely physically healed. This life is such a small speck of eternity that it seems to not matter at all in the whole scheme of things. But it does matter so very, very much. It does matter that we treat Thomas with dignity and respect, even when it seems as if he will never be capable of returning the favor. It is important to remember that he is a noble son of our Heavenly Father, even when his behavior seems far, far less than noble at the moment.

I hope that you can tell from these words that we love Thomas so, so much. I am personally so grateful that he is my son, imperfections and all. When he was 3-years-old, it finally dawned on me that he is a huge blessing and not just a problem that I had to deal with. My son was born with autism, but I do not tell people that Thomas is 'autistic'. One day, autism will be gone through the mercy of our Heavenly Father and his Son, Jesus Christ. They will heal all wounds, dry every tear, and perfect every body that has suffered in this life. For this, we are most grateful.

"Master, who did sin, this man, or his parents, that he was born blind?

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."


This is also a nice podcast from the Mormon Channel on Autism if you are interested. We can SO relate to the parents that tell of their experiences with their son.

We love you, Thomas. With all our hearts.

To be continued....

12 comments:

Jules said...

Love this... I can relate on so many levels. Very heartfelt and beautifully written!

Claire said...

So, so sweet. Thomas is such a blessing to all, just as the rest of you are. I'm so very thankful for your time in Texas-- for many reasons. I love your love for Thomas, your family and your Heavenly Father. What an outstanding perspective you have on your world! Keep smiling, my friend. You've got so much to be happy about. Love ya!!

nelsonjeneen said...

I am so glad you put this post up. It is a great comfort for all of us who have children with special needs to help us understand our children better.

With the twins (esp Jackie) we have been on the path the past year to figure out where her speech, cognitive, seizures and etc... are coming from.

I love the quote you included b/c i read that the other day and that is what keeps me going. I know my twins needs are different from Thomas's but it shows that parents need to be active in figuring out their kids and to follow the spirt.
thanks!
Jill

Melissa said...

Heather-this was BEAUTIFULLY written. Thank you for sharing all of the insights that you have learned over the years. You are an AMAZING person and we are so lucky to have you and your sweet family in our lives. We love you!

The Blackwells said...

Thank you for sharing this Heather. You are an amazing mother and Thomas really couldn't be in a better family with more loving parents and wondrful understanding sisters! Love you lots!!

the Lola Letters said...

I needed to read this so badly! We are dealing with many terrible things with Kortland {who, as it turns outs has ADHD, big time.}

We have been having horrible experiences with his behavior in school. With lying, with impulsiveness, with extremely poor social skills that have gotten so bad that he is losing all of his friends - and he can't even understand why - etc.}

It has been awful. Worst of all, we have come down on him so hard in the past, now only to realize that much of this poor behavior is beyond the limits of his control.

It is heartbreaking.

So much of your post resonated with me... for the past 2 weeks I have just cried and said to Kyle - "As it turns out, us demanding that Kortland sit still, and listen, and be quiet, and don't interrupt, is like telling a kid in a wheel chair that he could walk...if he really tried hard enough... or if he loved us enough."

The guilt is all but overwhelming.

I cannot believe how much his self esteem has plummeted over the past six months.

We are just beginning to learn and figure out what we can {and NEED to} do for him. But man, this is a lot.

Your words were such a comfort to me. Especially the part about what a gift our children can be, how they help us grow and be better, and especially how this is all temporary. I tend to forget the big picture sometimes.

You are so strong, and it was amazing to stumble upon this trove of calm wisdom at this time in my life. I just love your guts, and will be checking in on you guys!

Nicole said...

Hi Heather...
We've met a few times-but I doubt you remember. Lindsay and I were roommates at USU. Love that girl! (Actually I lived with Melissa for a semester too.) Anyways, my son is also on the Autism spectrum. He does all the outlandish things you described in your post. He goes to school 5 days a week for 3 hours a time. He's doing remarkable-much like you described Thomas...a few new words and phrases here and there. He is NOT social except at home where he feels safe and comfortable. He is learning so much...
But like you said...its what I am learning. Its how much I love him. How I get a glimpse of how our Father in Heaven must feel when he sees us, his children, struggle with life. Its the little things, the eye contact, the hugs, the kisses, the willingly doing something that is normally a melt-down, these things are far more important to me than anything in life.
Thanks for sharing your story. Thomas is an incredibly lucky little boy to have you as his Mom. It require patience and understanding to help kids with ASD function. I know you feel like you're the lucky one though, I do too.
Best of luck with all that you endure. I will have to look further into the diet thing, I know so many people that it has helped. I guess I need to become a believer too!

Chris Ryan said...

Thanks for sharing such an open dialogue about Tommy, his struggles, and the entire family's experience. You are a great mother to your children, and I know that the Lord has been watching out for Tommy, you, John and your girls. We love you guys.

Mary said...

Thanks for sharing your story, we love you all so much! And miss you down here in Texas :-)

Jen B said...

Heather, I always try to recognize how to appropriately interact with others, especially children, so thank you for sharing with us about Thomas. He is so blessed to have you as his parents. Also a technologically challenged friend requested that I ask a few questions. How does one best help Thomas? Do we initiate conversation or wait for him to talk to us? Do we put our hand on his shoulder, shake his hand or keep our hands to ourselves? What are some simple dos and don'ts that will help Thomas?

Jen B said...

Heather, thank you for sharing you challenges, blessing, and insights with is. I have admired your patience. My husband would like to know how is the best way to interact with Thomas? Can he be patted on the back or arm? Joked with? What is reasonable to expect from him for his scout leaders.

Heather said...

Hi Jen B! Is this Sister Bremner? I think Thomas and John and I would like him to be treated just as you would any other child his age. Thomas does not have an aversion to touch, so it is fine to touch him on the arm and to shake his hand. He can be joked with, but it's not guaranteed that he will understand the jokes. Thomas is extremely high functioning, he reads well and understands many concepts that we do. Where he struggles is in social interactions, how to say and do the right thing(s) at the right times. We are hoping with some specialized treatments, he will eventually be able to overcome these challenges. And if not, so be it! A short answer to your question is to treat him as a "normal" kid with the understanding that he has some challenges.