Determination: A Mom’s Journey to Diagnose and Treat Her Autistic Son
Amy Case first noticed that something was “not right” with her first son Zach when he was twenty months old. Up until then, Zach was a healthy toddler who seemed to progress at normal levels. But four months shy of his second birthday, he began to regress: he lost some language skills he had earlier mastered and would often wake up at night. These issues weren’t completely indicative of autism, but when he also began to have difficulty playing well with other kids, Amy became more concerned.
“He would lose eye contact with other kids and just wasn’t my ‘happy, social’ toddler all the time,” explains Amy.
The mother of three who lives in Richmond, Virginia says, surprisingly, that her pediatrician was not helpful in diagnosing Zach’s autism. In fact, when Zach was turning two, “he dismissed my concerns about language and told me to wait until age three to worry,” she says. Luckily, Amy ignored her doctor’s advice after reading that early intervention and therapy can be key to alleviating some autistic symptoms. At two and a half, Zach was evaluated by an infant services department who found that his development was “within normal limits and said he was fine.”
As you can imagine, Amy began to feel desperate as she watched her son slip further and further away. “At a little over three years of age, we started to get concerned again with language. He stopped talking in sentences and was down to just one- and two-word-phrases,” Amy reflects.
At the same time that his language skills were diminishing, his health followed. Zach began to get more frequent allergies and constantly had a runny nose and watery eyes. Ironically, during a follow-up visit with a new pediatrician regarding Zach’s allergies, Amy’s son’s apparent autistic symptoms were finally recognized.
“At a follow-up visit we saw a new pediatrician and he noticed Zach wasn’t talking much, and had some sensory stuff going on, like rubbing his face on the wall. Our new pediatrician referred us to a specialist. We saw two different ones and got the same diagnosis from both,” Amy remembers.
Now, at three and a half years, Zach would finally qualify for therapy—right? Not necessarily. Sadly, when Zach was diagnosed, it was in July and his school didn’t have anyone to do an evaluation to see what services Zach would qualify for.
“So we started speech therapy and had to pay privately, since insurance wouldn’t cover it,” Amy explains.
Amy was still struggling to find adequate services for Zach when pregnant with her third child. Luckily, one day out of the hospital from her daughter’s birth, Zach was found eligible for a program. Excitedly, she and her husband Mark anticipated putting Zach into therapy, but more snags ensued.
“It was late August and therapy services would not begin until early November. And the preschools around here were not well-equipped to handle children with autism. There wasn’t enough staff and they more or less tried a ‘one size fits all’ approach,” Amy laments.
So not only was she dealing with the demands of a toddler and an infant, but she and Mark had to share duties caring for their more demanding, autistic child without qualified help. When they did finally find a good private school in her area, they were shocked at the price tag: a $50,000 yearly tuition!
Coping Zach is now eight years old. He has two younger siblings: Jared six and a half years and Katie four and a half years. Life at the Case household is never easy. In fact, when I asked Amy, who was eager to share her story to help others, if she could write it, she just didn’t know if she could find the time or leave Zach with his brother or sister in case he lashed out at them and hurt them.
“As far as how we are coping….We have our good days and not so good days. I feel like I have found a good balance in the past year. I feel like I’ve come to accept that Zach will never be what most people consider ‘typical,’ but I do hope he will be happy and healthy. We found early on that we had a few ‘fair weather’ friends and when things got tough or Zach acted strangely, they were put off and stopped coming over. Even our families had a difficult time initially dealing with Zach’s differences. Now they are very supportive. We have made many new friends on this journey and it is a support to be around others who don’t judge your child or parenting techniques based on that child’s behavior,” says Amy.
In conjunction with Zach’s autism, he has developed other medical issues that Amy thinks may be tied to his development of the disorder. Zach has been tested and found to be “heavy, metal toxic” with mercury, antimony, arsenic, tin, aluminum, lead, and cadmium in his system. He also has colitis and lymphonodular hyperplasia (related to food allergies), and “significant yeast overgrowth in his intestines,” explains Amy.
She is currently tackling all these medical issues, but has a remarkable outlook.
“I think when some of these medical issues are resolved and treated, he will FEEL better, therefore will COPE better and be HAPPIER—which is all any parent really wants for their child, right?”
Amy suggests that other moms of autistic children find support. If your family isn’t supportive, or you live far away, she recommends finding a support group via the Autism Society of America. Her local chapter actually offers on-site, free childcare!
And it’s also imperative that parents of autistic children take time out for themselves. Amy’s mom and sisters often babysit so Amy and Mark can have a much-needed date.
Even with all the support, Amy says the road is still hard, especially on her other children.
“Without a doubt, the hardest part of raising our son with autism is not knowing what is wrong when he is upset or acts aggressively. Trying to explain to our other two children why their brother rips up their artwork, books, and school papers, or why he grabs at them or bites them, is hard. It is absolutely heartbreaking to see my child crying, screaming, rolling around on the floor, and not know why, or how to help him or comfort him,” she shares.
The Silver Lining Being the brother or sister of an autistic child can be hard at times, but Amy insists that so much good can come from the experience as well.
“The most wonderful aspect of raising a child with different abilities is that it teaches my other children compassion, caring, understanding, and acceptance. They are always looking out for Zach, making sure things are fair and other children are treating him with kindness and understanding,” Amy explains.
“I remember clearly one day when my younger son was only four, we were at a playground. He took Zach by the hand and led him to some kids and said “I’m Jared, and this is my brother, Zach. Zach has autism and doesn’t talk much, but he loves to play.”
Just recently Zach bit Jared, leaving a deep, swollen bruise. Instead of getting mad at Zach, Jared expressed frustration with the number of people asking about it.
“Jared said to me: ‘I just don’t want to tell people that Zachie bit me, because what if they think he’s a mean, terrible kid? He is not mean, he just has such a hard time getting people to understand him, he gets too frustrated and bites. I don’t want people to not like Zachie,’” shares Amy.
While Amy may be limited in just what she can do to help Zach, she feels good knowing that Jared and Katie are so compassionate.
“All siblings of special-needs kids are growing up learning more acceptance and understanding than any previous generation of children. That can only be a great thing for this world.”