Autism Moms and Dads Blog Series-Interview # 3

I did not have to look far to find these parents who graciously both agreed to respond to our interview questions. Rick and Ruth Robins are parents to Tripp, a third grader at The Williams School in Norfolk, VA, where I also teach band.  Although we have just begun our friendship, Ruth has already been wonderfully encouraging and supportive of my work my FIN and we have had some great discussions.

There are SO many parents out there who are trying to navigate the world of integration with children who have ASD but lean more toward the high-functioning/Asperger’s side of the spectrum.  We appreciate Rick and Ruth’s  willingness to share a bit of their experiences thus far. 

Rick and Ruth Robins-Interview #3

Tripp Robins

Question: How old was your child when they were diagnosed with autism?

Ruth: Tripp was five but the signs had been there since he was 15 months old. Family (specifically my mom) had been trying to tell us something wasn’t right but I was in denial. Can you share how you felt when you received that diagnosis? I felt numb, then very guilty. I tried to figure out what caused it. Maybe it was the medicine that I was on when I was pregnant with Tripp. Aspergers runs throughout my family so I didn’t have to look very far to see that we have a genetic predisposition towards it.

Rick: Our son was 4 when he was diagnosed with Asperger’s Syndrome. I was perfectly unfamiliar with autism at the time of his diagnosis. Google forays into the subject informed my earliest preliminary senses of what it meant for our son and our family. It was an overwhelming time. It was a gut-punch to look at the statistics on autism as they related to work, marriage, independent living, and the metrics that typically frame our expectations for our kids’ lives. It was particularly hard for me to think that my son could be socially challenged and disadvantaged. I was also surprised at the difficulty of finding the necessary therapeutic and educational resources. There is no single, easily accessed clearing house for resources for parents to point them in the right direction to necessary behavioral therapies and other resources. Fortunately for us, my wife’s openness about our son’s autism helped us to find therapists and a school for autistic children, both of which helped him immeasurably.

Question: How has living with autism affected your family? (immediate or extended)

Ruth: It, without a doubt, has taught us grace, grace, and more grace. Also, how to love in a way that is beyond our physical capability.

Rick: It has been difficult. It has also had a maturing effect on all of us. Immediately after his diagnosis, we were plunged into a crisis mode, trying to deal with his behavior and finding the necessary educational and ABA therapy programs and medical resources. We knew that an early intervention in his behavior was important, and we did everything that we could. That included an ABA therapy school, ABA therapists on weekends and as needed, neurofeedback therapy, finding a pediatrician specializing in autistic children, allergy testing, diet modification, etc. Crises often have their own life cycles, and we have fortunately been able to make progress through this as a family. He was able to successfully transition into a small private school after two years in the autistic school. We were on pins and needles as he transitioned schools, but he did great. It has never been a linear experience. Behaviors and tics emerge, get addressed and extinguished, only to give rise to other behaviors, foci, or issues. It has reshaped our expectations and capacities to have more bandwidth in our responses as parents and family members. It has made me much more empathetic.

Question: What is currently your biggest challenge as an autism mom/dad?

Ruth: Tripp’s perseveration on things can be really difficult. He won’t let things go and when he doesn’t get his way it can lead to a meltdown. He then feels guilty because he knows it’s not okay, but his emotions take over.

Rick: Our son is 10 and has a 13 year-old neurotypical sister. In the early years our son’s atypical behavior were the focus of a lot of our energy. This inevitably created asymmetries in the time, attention, and behavioral expectations that we exercised with our children.

 

Question: What is currently your greatest joy as an autism mom/dad?

Ruth: After YEARS of intense therapy Rick and I see Tripp coming into his own. He is able to articulate himself better and is beginning to have self-acceptance. We also hone his natural God given gifts to the best of our ability.

Rick: I have learned to appreciate my son for who he is, including his tendency to perseverate on issues (he hates our dog) and occasional, epic meltdowns. But he is an incredibly lovable kid, and he loves to fish with me, which gives us a great medium for our relationship. He is unique in his interests and extremely smart, so we are excited to see how he will use his gifts.

Question: Has autism affected your faith?  If yes, how so?

Ruth: Yes, it has made me lean on God more. There were many, many times I reached the end, I had nothing left and it was “Your grace is sufficient for me” that kept me going. I knew that each second, minute, hour, and day God’s grace was enough to keep me taking one step in front of the other.

Rick: Individuals within our church family have made a big difference in our lives and in our son’s life in particular. When he was about 4 to 6 years old, he was wiping out in classroom settings, and that included Sunday school classes. A family in our church, and their sons, who are passionate about autism, took turns being our son’s “buddy” in Sunday school, and they would help him to have a successful class experience. Others have filled that role during church services, since he performs better sitting with them than sitting next to his sister! He has been well loved by our church family.

Question: Is there anything else you would like to share about being an autism mom/dad?

Ruth: We have learned to appreciate each of our children for who they are and who God created them to be, not to try to mold them into something they are not. Also, we have learned to focus on what really matters, the rest in just extra fluff.