An interview with a young mother of an autistic son
Posted April 30
Did you know that April is Autism Awareness Month? One of 68 children is on the autism spectrum, according to the National Autism Association.
The disorder usually presents itself in children before the age of 3, and boys are four times more likely to have autism than girls. The association says that autism “impacts the normal development of the brain in the areas of social interaction, communication skills and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions and leisure or play activities.”
Many parents who have a child on the autism spectrum are confused by their child’s behaviors and experience profound struggles in knowing how to best address their son's or daughter’s needs. I recently sat down with Tara Hendriksen whose first son, Ty, was diagnosed as being on the autism spectrum. Tara explains what it is like to be a parent of a child with autism.
What made you start to suspect that your son, Ty, might be on the autism spectrum or have something else going on?
Tara Hendriksen: Looking back, Ty was a really hard baby. He’s my oldest, so I was naive and didn’t realize that all babies weren’t like him. He had a hard time sleeping and difficulty eating. By the time he was 18 months, I realized he had zero words and wasn’t even trying to imitate sounds. My friend told me to have him evaluated for early intervention to see if he was delayed in speech. It was free and so easy since they came right to your house, so I gladly did it. I was surprised that he easily qualified for services.
About the same time he started speech therapy, he was having a hard time in the nursery class at church. He was very aggressive toward the other kids, and his teachers had to have an extra adult shield him from the other kids.
Hearing this broke my heart and kept me up at night wondering what I could do to help him. Obviously, there was something more to his speech delays, but I didn’t know what or how or where to go. He started having 10-15 meltdowns a day, and he just seemed like a giant ball of frustration who wanted something but didn’t have the ability to express his needs.
What did it feel like as a mother when you couldn’t fully understand your child’s needs and how to help him?
TH: I can’t describe the heartache I felt and frustration over knowing something was off but not knowing where to go or what to do. My pediatrician brushed my concerns aside, and as a new mom, I didn’t know where else to go and assumed it was just a “phase.” I remember calling my mom in tears, asking why raising kids is so hard.
We also had a surprise baby at the time, so when Ty was 18 months old we had a little 4-month-old as well. I was working full-time to support my husband in school, so it was a rough time for our family overall.
However, I think you have to experience the bad times to appreciate the good and to be able to measure progress, no matter how large or small.
When did you decide it was time to seek professional assistance for Ty? How did you go about finding resources?
TH: I soon thought that if he had more “practice” being around other kids he could learn to how to interact with them better. I drove all over Utah County looking for a preschool for a 2-year-old, but found only daycare options. I was so frustrated.
But then it dawned on me that I should go to the physical location of where Ty was getting his in-home speech services — Kids on the Move in Orem. There they had an autism preschool for young kids that he could attend, although I had zero inclinations that he might be autistic. I enrolled him as a “neurotypical” child who needed extra socialization.
Looking back, it’s so obvious and almost comical that I was led to exactly where I needed to go but was clueless at the time. I know I was a desperate mom being guided to the help we needed. After going there for about three months it was obvious he had more than just speech delays. In October 2012, he was officially diagnosed as being on the spectrum and we continued going to his autism preschool at Kids on the Move.
Tell me a little about the things trained professionals have done with your son to help get him to the point where he is now. From what I can tell, he seems happy and able to function well.
TH: Again, it’s difficult to describe the love that we feel for his therapists and teachers. They became family to us and we still keep in contact.
We went to the Bridges Autism program at Kids on the Move for two years straight — 28 hours a week, all year long. His teachers there spent more time with him than any of our other family. They knew him as well as I did.
Sometimes I would wonder what I was doing, packing his lunch, diapers and wipes into his little backpack and sending my 2-year-old to a school that was as long as a part-time job. But it soon became obvious they loved him as their own and I knew he was in good hands.
They did the impossible — taught him to sign so that he would have a way to communicate, potty-trained him, how to sit and listen, control his aggressions and eventually talk. It was exactly what he needed.
He received ABA (applied behavior analysis) therapy, and for him, it clicked. We definitely had our trying weeks, slow progress at times and setbacks, but overall ABA therapy was what he needed. He also continued to receive speech and occupational therapy services since he has hypersensitivity to oral input. This means he has major sensory issues in his mouth, so this causes eating problems similar to selective eating disorder and food jags, which we still struggle with.
After Bridges, he then went to Giant Steps Preschool, which had a two-year wait — he was extremely lucky to get in. Again, the teachers became family and he continued to progress. I tear up just thinking about each individual teacher and therapist.
After graduating there, he had progressed enough that he was ready to be mainstreamed for kindergarten. That was something I never dreamed was possible. Ty is definitely happy and functioning well.
Currently he is in first grade without any services. He graduated from his IEP last year and is at the top of his class. Sleeping is no longer an issue for us and his speech has caught up to his development level. Socially he does fairly well, and we haven’t had any behavior issues or problems at school. Eating is still tricky and we have some anxiety issues we are dealing with, but overall, people are shocked to learn he’s autistic.
What has been most helpful for you as a mother navigating the joys and struggles of having a son with autism?
TH: It’s definitely a combination of many things — family support, faith and prayer, the autism community and fellow autism moms who welcomed us with open arms, and wonderful teachers and therapists.
Also, it’s the gratitude for resources that are available and miracles that occurred. Ty just happened to be diagnosed at the same time a huge government grant application was due. We hurried and applied and spent the next two months praying, fasting and crossing our fingers.
In January 2013, we found out he was a recipient of the grant, which meant he would receive the 28 hours a week of therapy for free for the next 18 months — the equivalent of $40,000. He was one of eight kids in the state of Utah to receive the grant and one of five kids in Utah County. The odds are mind-boggling to me.
Obviously, this was huge to us and a direct answer to our prayers. There is no doubt in my mind that Ty’s progress is correlated to that grant. Ty also got into Giant Steps preschool, which is the best autistic preschool in Utah. There is a two-plus-year waiting list, and he initially was told there wasn’t room for him when it was his year to go.
However, due to another miracle, one spot opened up and he was able to attend there for free since it’s through government funding. I attribute Giant Steps to helping him be successful in kindergarten.
What has been the hardest thing about having a son with special needs? What has been the biggest blessing?
TH: The hardest thing is watching your child struggle and as they get older, the worries you get that they’ll fit in and not get teased or bullied. I want him to have self-confidence and know that he is just unique and special.
Just this past year he asked for the first time what autism is and I’ve had to explain it; it’s a hard thing to do. But he is very sensitive to others who are handicapped or (have) special needs, and that’s a blessing.
Also, as I mentioned earlier, all the funding and support we’ve had — I’ll be eternally grateful for what we’ve been given.
What advice would you give to mothers and fathers who have a child that is on the autism spectrum?
TH: No two kids on the spectrum are alike, so I don’t pretend to know what all parents go through or how they feel. But I do know there is an instant connection to those who have a special-needs child. It’s something that cannot be explained.
I may sound like things are all better now and our hard times were in the toddler stages, but that’s not entirely true. Things are 100 times better now and progress has been substantial. But we still struggle with things, and autism likes to roar its ugly face occasionally to remind me it’s not gone or ever will be. But that’s OK. That is what parenthood is. If raising kids were easy, it wouldn’t be the most fulfilling, rewarding, joyful experience that exists.
My advice and the advice I am continually trying to remember is to try not to let others’ insensitive comments hurt you, don’t judge others and hang in there. You are not alone. One of my all-time favorite quotes that have become words that I try to live by is when Elder Jeffrey R. Holland (a leader in The Church of Jesus Christ of Latter-day Saints) said, “Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. Some blessings come soon. Some come late and some don’t come until heaven … but they come. It will be all right in the end. Trust God and believe in good things to come.”
For more information, visit http://nationalautismassociation.org/.
Dylan Cannon is a regular KSL.com contributor and can be reached at DylanCannon86@gmail.com or via twitter @DylanCannon11. Listen to his weekly podcast, "Cougar Talk," on iTunes.