Everyday when I awake my other kids for school, they open their eyes or sit up acknowledging me. When I say “James wake-up” 9-10 times, he doesn’t move. I tickle him or roll him over and he shouts “Noooooo!” I offer him bribes and beg and plead with him just to get up and walk into the living room. Most of the time, I end up carrying him into the living room with him fighting and kicking me.

He is 7 1/2 years old and still in diapers full-time. After changing his diaper and dressing him, I ask him what he wants to eat. When I ask, he completely ignores me, after asking 6-7 times he gets annoyed and either cries or yells “Noooooo!”
When I tell my 3 other kids to get their jackets and backpacks and get in the car, they all do–except James, he continues doing whatever it is he is doing. Most of the mornings I have to carry him into the car, but he will not get out and go into school. I try every day but instead, end up taking his work home.

I sit him at the kitchen table and explain his work to him, but after returning to check on him I see that he has meticulously filled the entire paper with perfectly lined rows of small squares. Thats great, but the paper was full of math problems.

We take a trip to Walmart and James loudly repeats the phrase “Buy more, save more, Walmart!” I ask him to stop and he bangs his head against me. When we walk by the stuffed animal-dogs, James squeals and flaps his hands–He is obsessed with dogs and picks one out and hugs it.

At home I try to play some music on the stereo but James can’t stand music and often times attempts to break it. If a guest that James does not know comes to our house, James gets annoyed and either hides in his room–or attempts to harass our guest until he leaves.

When daddy comes home from work and is holding doughnuts for the kids, all the kids run to him excitedly–except James who acts uninterested and only accepts a doughnut when we hand it to him.

At night when we tuck James into bed, we both tell him “We love you James-ey bug!” He screams “Noooooo!” but we see the smile on his face–he knows he is loved.

I am a mother of two adorable little boys with asperger’s. Jax is 4 and Tyce is 2. They are the absolute joy of my life, and I am sharing my story because I want to do everything I can to help them and to help others. My husband is a family physician, and he and I are incredibly motivated and understand how important early detection and intervention is. We hope all parents or anyone involoved in a child’s life will follow their intuition if they think something is not quite “‘right” with their child. I had such intuition and I wish I would have followed it earlier.

Jax was born 5 weeks premature but was healthy and happy. He was an “easy” baby- he rarely cried, he could play alone with toys for literally hours if I let him. He loved puzzles and books at a very young age. He walked at 11 months. His pincer grasp was normal. My husband and I were completely in awe at his ability to recognize every single letter and number by 15 months.

I started to become concerned at 18 months. He did not seem interested in other children at all. He would not play with them or even look at them. He was also not speaking meaningfully at this time. At 2 years old he was speaking, but it was echolalic with very little spontaneous speech. His language, however, exploded shortly after he turned 2. He could say very complicated words. He had many books memorized, including “are you my mother?” by Dr. Seuss.

When Jax was 25 months old baby brother Tyce was born. Jax had zero interest in baby. He would not look at brother or acknowledge him in any way. Everyone told me I was overreaacting when I told them my concerns. Family and friends could not see how an incredibly handsome, funny, brilliant boy could have any problems. My instinct told me otherwise.

I had him evaluated when he turned 3 years old. He met criteria for autism through the school system and received a diagnosis of Asperger’s from a wonderful, caring developmental pediatrician at the Universtiy of Utah. After his diagnosis we jumped right in to various therapies. Speech, OT, PLAY Project and playgroups. Jax is now 4 and a half. He is potty trained during the days. He is social and quirky. He desires to be around other people, but doesn’t always know how to act or what to say. He perserverates. He stimms when he gets anxious. He is an extremely picky eater.

He has SO many strengths!!! He is very bright and very funny. He is so happy. He wants to be happy and wants others around him to be happy. He is inquisitive. He is doing well in school. Everyone loves him that meets him, and he has SO much potential. I am very optimistic for my sweet Jax.

My youngest son, Tyce, was diagnosed with Asperger’s in January of 2011. His diagnosis was hard to take as it seemed he was developing typically until the age of 18 months, and then things changed. He stopped being playful with other kids. He stopped making eye contact. He has a different temperament than his brother, he is fiesty and stubborn and his language is not where it should be. Eye contact is incredibly difficult for him. He does not have interest in other kids and shows anxiety around them. Tyce is receiving many services thought early intervention. I am still learning how to help Tyce as he is so young and not very verbal. I just play with him and love him and keep my optimism high.

I am dedicated to my kids. I am incredibly optimistic for them. We have many rough days thrown in with the good ones and this autism roller coaster is something we are learning ride while keeping our perspective and sanity in check. My hope for my boys is a happy life. Someone once said to me “don’t get bogged down with the thought of autism- it’s just a different way of getting to the same place: a happy life”

The buses are starting to pull up. In fact, some are already sitting with engines quieted in front of the school as the five of us head out to gather our nine or ten students. I notice many of my small friends are sitting quietly with faces pressed to the windows looking out. We smile and wave to them, hoping for a quick sign of recognition, a smile, just maybe even a wave back. Our day has begun! The bus drivers carefully gather coats, replace kicked off shoes and hand down backpacks as each child carefully navigates the steep steps down to the sidewalk. That last step is just too big. “Big jump” laughed as we help small legs jump down signals our day of social interactions, sensory opportunities and communication has begun in earnest. “Hi – I’m so glad to see you!” teachers say with great enthusiasm, working for eye contact. And we mean it.

The walk down the school hall to class is daunting. So many sensory opportunities! Bumpy bricks and scratchy carpeted walls interrupted by flapping, colored papers simply must be touched. Door thresholds and ramps challenge our balance. Flickering fluorescent lights, with maybe some halogen spots here and there, make it hard to know where to look. It’s especially hard to not stop, strike a pose and be Superstar in the brightest spotlights. Open classrooms filled with chattering big kids and lecturing teachers make us want to check it out. We hold hands tightly – each teacher has a child holding both her hands. “I like how you stay with your friends!”

Together, we make it to our classroom. Will we all remember the group routine? Let’s see – first, hang up coats and backpacks. Find the right hook with my picture near it. If not, there’s a teacher there to remind or show us. We can figure out how to do it all by ourselves with enough time. Then time to play with toys. Toys to share with a friend. Toys to spark creative thought. Toys that sing and pop if you push the right button. Toys that are fun to jump on, hide under and just explore. And toys to line up, just so. There are teachers everywhere to show something new to do with these toys. And then, music plays reminding us to come together again as part of a group. Class rules are reviewed with pictures. We practice sitting in a chair with a quiet body, quiet voice and eyes on teacher. Pictures help us know what songs we can choose today. Everyone gets a turn as teacher says, “Come choose a song!” Everyone gets to join the group following the leader, tapping sticks, wearing fuzzy hand puppets and turning tiny moon lights off and on, too. Then a picture review of the day’s schedule. “Let’s see, we already hung up coats and backpacks. We played with toys. We had circle. Now it’s time to wash hands, have snack and do our work.”

The water is too cold, then just right. Soap squirted in hands feels squishy. Not everyone wants to wait for this. Not everyone wants to do it, either. “Throw away the paper towel.” Then, find our books or menus with pictures of our snack choices. Choose a colored chair to sit on. Wait for our friends. Yes or no? Do we want a napkin? Do we want a drink? Try this pretzel stick. Try some pudding. Try dipping your pretzel in the pudding. “Try it – it’s fun! Use your words. What do you want? Ask for more! All done? Go to the garbage. Good job – you did it!” Now get your box. “Where do you go? Look on the lid. See, your schedule says you go to red square.”

Take off the little red square and put it in the envelope with the same red square – it’s by the shelves with red doors and a red edged table. Work with a friend and puzzles, peg boards, cutting, gluing, coloring, or even painting. Teacher says, “Two more minutes.” It’s time to clean up. What’s next? “Check your schedule.” It says, blue circle. Find the blue circle, blue doors and blue edged table. Put the small blue circle in the envelope. We can play with toys in different shapes, colors and numbers. What? Two more minutes??? Time to go to yellow diamond. Take turns with your friend using words. Talk about the pictures, “What’s this?” “What’s happening here?” Ask for toys. Use sentences. Say your sounds carefully. Time to get ready for buses!

“Put away your boxes.” Wait your turn to get your coat. Try it all by yourself. “We had fun. Are we all ready? Hold hands – let’s go. Your bus driver is waiting for you!” “Up you go. Bye – see you tomorrow!”

I email a mom and return some phone calls. That leaves about 15 minutes for lunch, sitting in a tiny child-sized chair, chuckling about life with my adult friends. Then it’s time to head out again to the buses holding the afternoon students. “I’m so happy to see you.” And I really mean it, too.

Travis has struggled most of his life, even before he was born. In April 1998, when I was four months pregnant with him, he developed hydrocephalus (too much fluid on the brain).

My doctor sent us to a specialist who did an amniocentesis to see if he had some birth defects, but the tests showed everything was normal.

About a month after being diagnosed, and after several prayers from lots and lots of people, the Hydrocephalus cleared up and the rest of my pregnancy went well.

We didn’t notice there were any more concerns with him until he was about 3 or 4 years old. The Pastor’s wife came up to us one day after Sunday School, and said that Travis had a hard time using scissors and she said we should help him practice using scissors.

He also had a hard time with a few other things, but we just thought he was a slow learner, and we didn’t know anything about autism back then. It wasn’t really talked about that I can remember, especially Aspergers.

When Travis started school he would play alone, he couldn’t socialize very well, he had a hard time using scissors, he struggled with writing, paying attention, and a few other things, like facial grimacing (which we found out later is a tic).

Things got worse in 3rd grade. He started flapping his arms more, humming to himself, he wouldn’t do his work, he would spin in his chair, and he would zone out like he was in his own little world.

One day I got a phone call from his school. They were concerned because Travis was shaking his head from side to side uncontrollably, and they told me I should call the doctor.

I picked him up from school and observed him all day until I could take him to the doctor. The doctor told me there was nothing he could do, because this was “out of his league” and so he wanted to send our son to a neurologist at Primary Children’s Hospital in Salt Lake. But there was a two month wait.

Then a few days later, he started to get a big fear of germs when this little kid coughed near him. That day, the school counselor at the school he had attended, wanted him to go home.

She said, “He can’t handle school! And you should keep him home until you figure out what is wrong with him!” and so she made me take him home. I think she just didn’t know how to help my son and she was frustrated.

I was upset and frustrated and so I spoke with his teacher about it the next day. She disagreed with the counselor and said she could make accommodations for him and told me to bring him back, and so I did.

His tics continued, and I was scared because I didn’t know what was going on with my son. At the time, I did some research and found that my son was showing signs of possible Aspergers Syndrome and Tourette’s Syndrome.

I prayed that we would be able to get him into the neurologist sooner then two months. About a week after I made his appointment we got a phone call from the Neurologist saying they had an opening for the next day. Our prayers were answered!

We took Travis to a neurologist the next day to see what was going on. One time when she asked him a question, he zoned out and wouldn’t answer her. She was concerned, so she ordered an MRI and and EEG to check for tumors and seizures.

The tests didn’t give us any answers, but she diagnosed Travis with Generalized Anxiety Disorder (GAD), tics due to stress, Obsessive Complusive Disorder (OCD), and possible PDD (Pervasive Developmental Disorder). She also recommended we get our son a Neuro-Psychological Evaluation with a Neuro-Psychologist.

Shortly after we got the MRI and EEG results, we sold our home and moved away. Travis is currently in a good school and we have had nothing but good experiences there. It was another year and a half before we could do the Neuro-Psych Evaluation, because of finances.

Travis was officially diagnosed with Aspergers Syndrome, and Tourette’s Syndrome in August 2009. And the OCD and GAD we found are part of his Aspergers.

My son is now 11 years old and still he struggles on a daily basis, and it breaks my heart that he will struggle with this his whole life.

But he is also one of the most amazing people I have ever known. He is very loving and caring, and while he struggles emotionally, he is very smart and such a blessing in our lives in a lot of ways.

He is into movies big time, and he can tell you all about the making of “The Wizard Of Oz”, or “Back To The Future” Trilogy, or even all about the ship Titanic. He also likes to write stories on the computer, and likes black and white movies and photos. When he grows up, he wants to make movies.

Because of our experiences, I have decided to dedicate my life to spreading awareness in our schools and community and helping other parents get the emotional support they need. Having a child with autism is a very lonely road, and parents shouldn’t have to be alone in all this.