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Local mother shared her family's journey, struggles with son's autism

The Daily Nonpareil - 4/1/2017

For a parent, a sick child is worrisome. If the child's diagnosis is life-changing, the worry becomes devastating - as life-changing for the parents as for the child.

That was the case for Stacy Ring and her husband, Scott Neal. Their son, Alex Neal, was, in Stacy's words, "... an amazing baby. He was so beautiful, engaging and easy-going."

But that all changed somewhere around Alex's second birthday in October 2007. By the time Alex's younger brother, Matthew, was born in December of that year, Stacy was noticing changes in Alex. At the suggestion of her pediatrician, Alex was assessed and diagnosed with autism.

The diagnosis proved as life-changing for Stacy and her family as it was for Alex. For Stacy, what followed was an eight-year struggle with grief, a struggle that's still part of her daily life.

She dealt with that grief by attacking it head on. She frequently refers to it as a war, one family members work daily to win.

April is National Autism Awareness Month, a time set aside to focus on a developmental disability that has grown in numbers during the last 20 years. It now affects one in 68 children. Boys are four times more likely to have autism than girls. Individuals with autism often have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.

Lori Durand, the Council Bluffs Community School District's school psychologist and an autism facilitator, said there are more than 100 students in the district from pre-school to high school who have been diagnosed with autism.

The district offers special autism programs at Rue and Roosevelt Elementary schools, Wilson Middle School and Thomas Jefferson High School, a continuum of educational services that keeps autistic children with their peers.

Alex attends special education classes part of the day, with the remainder of the day spent in Joni Robey's fifth grade classroom. The students "make every effort to include Alex in everything." Those peers have become an important part of Alex's life and his education.

In addition to the efforts of the school district, a Council Bluffs Autism Support Group meets at Roosevelt Elementary the third Tuesday of each month at 6 p.m. It has a Facebook page and respond to anyone who leaves them a message needing support, education or referrals to helpful services.

The support group will sponsor an Autism Walk at 9 a.m.May 6 on the Iowa School for the Deaf campus to help raise awareness.

Stacy's story offers an invaluable lifeline to other families facing similar situations.

I remember what an amazing baby Alex was.

He was so beautiful, engaging, and easy-going. He was so relaxed about things that he was often used as the "demonstrator baby" during his swim class as a 3-6 month old child.

He remained this way until just after his second birthday in October 2007. I don't know exactly when it was that things started changing for him. We had a busy fourth-grader, a first-grader, a toddler, a new baby on the way and my husband was traveling often for work.

By the time our baby was born in December 2007, I was noticing changes in Alex. He wasn't as affectionate and didn't seem to want to sit on my lap and be held. He wasn't really interested in the toys he had loved before, and he wasn't following his older siblings around like he had before.

He seemed aimless and disorganized. He paced around the house, clapping or laughing for no reason. He didn't seem interested in anything, and his speech was harder to understand, though he was making noise a lot.

After a few months of telling myself this was all a reaction to the new baby, I realized I needed to find out if there was something else going on. I was told that I needed to call our local Area Education Agency to have him assessed.

I made that call, not knowing what I was calling to request. We waited months to hear back. When the AEA worker did finally visit our home, she spent about 45 minutes interviewing us and evaluating him, then said that he had autism and that she would be in touch with appointments for further evaluations.

I remember being infuriated by her proclamation that my beautiful baby had autism.

Looking back, I see that I went through all the stages of grief during the past eight-plus years. I had been in shock and denial up to the point that she said that word: autism.

That word attached to my beautiful, perfect little boy moved me right into the next stage: anger. I was angry for a very long time, about almost everything and at a lot of people.

Most of my anger was directed at the service providers who were trying to assess and provide services to him, because they seemed to love using that word. They seemed to be looking for more and more things he could not do.

No one was looking at what was right with him or talked about his strengths. I worked to make allies of good providers because I knew I was fighting to save my son, both from whatever was going on inside him and from people who didn't see him for the beautiful blessing he had always been to us.

I knew I was losing ground, though. His verbal skills were declining, he wouldn't join in play with us and he was missing other developmental milestones such as toilet training, motor skills like writing and drawing simple shapes and throwing a ball.

While I was angry, I was also busy, taking him to what seemed a never-ending list of appointments. When I wasn't working, participating in these appointments or trying to be a parent and a wife, I was researching everything I could about autism.

I held on to any evidence I could find that he didn't fit this diagnosis, looking for any hope that he could improve.

I soon entered the next phase of the grief process, bargaining.

To get my son the services he needed from the Early Intervention program, which mostly included speech therapy and occupational therapy, as well as the opportunity to enter preschool for students who had been identified as having deficits, I had to sign a form that identified him as having a disability.

The word disability was almost as profane to me as the word "Autism." At first, I refused to sign this form, but after four months, I had to either sign the form or terminate services.

I continued looking for other answers, and found quite a few "miracle" treatments, including a gluten-free/casein-free diet and chelation therapy. It was based on a theory that the symptoms are caused by a toxic level of metals in the body.

Our pediatrician supported trying the diet intervention as long as Alex was receiving proper nutrition. In the end, we did not see the "miraculous" results others claim to have experienced.

Alex continued to lose ground on his developmental milestones. He wasn't playing with his peers or his siblings, he didn't play with toys the correct way and he wasn't developing motor skills like cutting with scissors or pedaling a bike. There was still a lot of noise but even less of anything that sounded like words.

When bargaining no longer worked, I had to face reality. I entered the depression phase of grief.

I remember the night it happened. I was at home in bed, alone with my laptop, looking up something about what was going on with Alex. My children were asleep and my husband was out of town.

Something in the words on the screen struck my soul and it was over. All of it - the denial, the anger, the bargaining - it was all gone. What was left was the darkest, most empty pit of despair.

I remember sobbing like I had never sobbed in my entire life. I felt like I was going to die. I actually hoped I would die, because the pain of that despair was so much more than I thought I could bear.

Eventually, I did stop crying. I got up the next day, took care of our family and I kept fighting for Alex and for his future. But inside, I was on life support.

I stayed in depression for quite a while. There seemed to be no reason to feel hopeful. Alex's behavior was even more disorganized. He would drop to a sitting position and refuse to get up any time he didn't want to move on to whatever the next activity was.

He wasn't throwing tantrums. It just the opposite: he was quite calm and pleasant. He just wouldn't move. Speech was non-existent, and his weight was increasing dramatically because he was constantly seeking food.

But he was starting to allow his peers at school to interact with him. One peer was very successful in directing him to do things he needed to do, like transitioning between activities. Another peer was more successful at getting Alex to join in play activities.

That was the glimmer of hope I needed to help me move out of depression.

I began the next phase: testing. I tried using the word "autism," though not in reference to Alex at first.

I started talking about the struggles our family had faced. I also started testing out social situations with Alex again.

Alex now attends movies, Scout banquets and family dinners at restaurants. The one thing I struggle to test is church, but the most recent attempts at church services have gone pretty well.

The last phase in the grief cycle is acceptance, and I'm not sure if I'm there yet. I have accepted that Alex has autism, but I don't think I've accepted what that might mean for his future.

Siblings

It's important to understand the perspective and experience of siblings in families of people with Autism.

Siblings are kid themselves going through kid growing pains and stages. When autism is introduced into the family, it's really hard on the siblings.

Matthew, 9, understands Alex as a 9-year-old would. "He's my brother and he's mute, which means he doesn't talk." Sometimes he explains that Alex has a "glitch in his brain," which is how we tried to understand what causes Alex to experience the world and respond to it the way he does.

He said he worries that Alex might get sick or need help and would not be able to tell us.

My other son, Patrick, 16, points out that Alex is "really easy-going" and "funny."

In the beginning, he didn't understand what Alex was going through or why it was happening. His first concern was that Alex could die from this. Now he knows it isn't fatal, but he worries about Alex's future.

Patrick is Alex's helper, leading him as an older brother would.

My daughter, Libby, 19, agrees that Alex is "easy-going, fun, and likes to joke and mess around," and says he's "smarter than most people think."

It's been hard for her, being a teen through most of this journey, because she didn't know how he would react in some situations, or how others would react to him. She didn't feel like she could take him to places she would take her other brothers.

They've all had to do things older siblings do for younger ones, but they've had to do it with someone whose behavior is pretty hard to understand, is embarrassing in public and who can't communicate verbally to others.

Fathers

Alex is blessed with a wonderful dad. The hardest part for Scott was not being able to find the answer or "the fix" to the problem of what happened inside Alex.

There were some things that seemed like they might be "the fix," including some technologies that appealed to the engineer in him, but they weren't.

Another hard part is that we don't really know what Alex wants or prefers. Scott works really hard to do fun things with the kids - things they enjoy.

He knows they want to do those things because they tell him they do. Alex can't do that.

That reality frustrates Scott because he wants Alex to have a life filled with activities he enjoys.

Instead he guesses, as we all do, and hopes that Alex really enjoys these activities.

Family

There were times I feared our family wouldn't survive this war intact.

I knew we would all physically survive, but I didn't always know that we would make it as a family or as a married couple. There was no way to make it work for anyone unless we did it together.

We became the family army. Everyone is mission essential. There is a clear chain of command, and we are all accountable to each other. Everyone has to work together so that everyone can get their needs met.

We're more than a team because in most teams, players join. We were drafted into this mission because Autism declared war on one of us. We were fighting for survival.

Advocacy

One of the most important skills I have developed on this journey is how to be my son's voice and his advocate.

I have had to use my voice to obtain the services Alex needs, to assert his rights (and ours), to point out problems in systems or practices, and to work for his inclusion in everyday activities.

I know that I have to make sure my son's voice is heard in every environment and activity, and that I have a right to make decisions for him based on his best interests, not what is most convenient for anyone else.

Most of all, I have learned to find the services and supports my son needs, and to not give up until I find them.