JOSEPH'S AND JONATHAN'S JOURNEY

BY ANGIE AND DAN, AND KENDRA ROGERS, MS, EDITOR-IN-CHIEF

Angie and Dan met on a group date in 1987. They dated on and off for several years during high school. The pair reconnected as young adults and talking of marrying and starting a family. They married in 2000 and decided to build a house in a more rural area. Now it was time to think about starting a family.

In 2006, after trying for over a year, they were elated to find out that not only were they expecting but were expecting TWINS. The couple welcomed their identical twin boys in the summer of 2007, Joseph and Jonathan. As first-time parents Angie and Dan thought their boys were developing typically.

Unaware of any missed milestones the new parents felt the boys just had their own twin-to-twin language. After a routine “well baby visit” the pediatrician was concerned the boys were not functionally communicating. The pediatrician referred the family to the University of Michigan, Ann Arbor for testing. Following a full day of testing the family was gathered together in a room with all of the “professionals” to give their prognosis. The main doctor looked at Angie and began by saying, “Well, with Autism...” and that’s all Angie heard. Everything stopped. The world went silent and everything she thought she had with her boys was gone! As she gained her composure, she began to ask questions... “What can we do, what do we do next, are you sure, are there supplements, therapies, diets, medicine, what do we do?!?!?”

Again, the doctor very sternly said to Angie “There is no cure for Autism” and sent the family on their way.

As they reached the parking structure, Angie collapsed. Dan tried very hard to console her and reassure her they were leaving with the same boys they had walked in with, nothing had changed, while Angie explained “We lost the boys we thought we had”. Again, Dan was very caring and helpful, but Angie was no stranger to Autism as she had been a special education paraprofessional. Joey’s and Jonathan’s diagnosis was something she never wanted or expected to hear.

When they went back to their pediatrician the doctor was surprised by the diagnosis. “But they are so loving and affectionate” the doctor stated. (A VERY huge misconception about autism) Grief and mourning set in for the family, losing the children they thought they had, all the hopes and dreams GONE in 1 short afternoon. No playing baseball, no learning to ride a bike, no senior prom, no high school graduation, possibly never marrying and the list goes on and on. Given the information with no guidance or hope for any positive future for the boys, the couple looked into any help they could find to make sure their boys could have the best possible outcome in life.

The first thing they did was remove gluten and casein from the boys’ diet because it was one of only a handful of things reported to help. This proved to aid their G.I. issues and some behavioral issues as well. At this point, the couple did not know where to turn next as the boys had just turned 3 years old. They got information about help in the educational system, so they pursued an educational diagnosis of Autism as well. Angie was holding out hope for the diagnosis to be contrary to the physicians but unfortunately, they concurred with the U of M diagnosis.

Although the boys met all the criteria there were not a lot of options for therapies for the family. Speech therapy was needed but not provided outside of a school setting until the age of 6. The family had heard about ABA (Applied Behavioral Analysis) which at the time was the “gold standard” Autism therapy. The parents looked into enrolling them into ABA to no avail because at the time Dan’s insurance did not cover it and the out-of-pocket expense was just not feasible. The parents started petitioning Dan’s union HARD to get them to establish ABA therapy covered by their self-funded insurance. In the meantime, the parents enrolled the boys in an early-on program through the schools both in school and at home. They also began in home out of pocket speech therapy with the help of family. The couple constantly searched for ways to help their boys.

Angie and Dan discovered that GHS (Genesee Health Systems) could be of support for the boys and Angie. The 3 of them participated in a type of “Play Project”. This was very helpful at the time but also included a lot of travel time and arranging care for the other child on opposite therapy days. Additionally, they offered a parent support group, shared information on obtaining SSI, FSS, and respite care, and continue to be an ongoing resource for the family to this day.

After MUCH fighting and advocating for the insurance company to cover the ABA therapy, it was finally approved!! Angie and Dan were thrilled and eager to finally get the boys this therapy. When the family eventually found a facility, it wasn’t exactly close to home and Angie had to get the boys ready and take them daily which proved to be quite the task. Initially, ABA therapy seemed to really help the boys but over the years and over 4 different centers it had run its course. Not to mention after a time they lost their insurance coverage due to some re-disbursement of funds by the state of Michigan and they found themselves actually paying out of pocket for this hugely expensive therapy. (ABA is a whole separate topic that we can all “argue” about later.)

In the early years, the boys were in and out of school depending on the need and availability of outside therapies. As time went by it became more and more apparent there just wasn’t a “good fit” for the boys anywhere in the educational system. It really appeared that the schools were not prepared or ready for the onslaught of children being diagnosed with autism. Both the boys received I.E.P.s (Individualized Educational Plans) when they entered school, and they were also provided special transportation by the I.S.D. (Intermediate School District). Even with these supports the boys didn’t fit into their regular public school and also did not necessarily need a center-based program. School has been a struggle since the boys started in 2010. Angie has definitely turned into a full-time autism advocate and “Momma Bear”.

Over the 13 years in school, the boys have been bounced around over a dozen times and Angie and Dan have hired many an advocate. Furthermore, the boys have “School Refusal” and really put up a fight about going daily. Because autism is not a “one size fits all” type of diagnosis, education, therapies, and even diets and supplements are all tricky things to navigate. The saying is “if you’ve met 1 child with autism, you’ve met 1 child with autism.”

(Even in the case of identical twins)

While it has not been an easy road Angie and Dan have fought hard to provide and obtain the best possible therapies, education, nutrition, and support for their boys. To say that it had taken a toll on their marriage would be an understatement.

The divorce rate for parents of children with autism is 80% and they were keenly aware of that fact. Unfortunately, they have become part of that statistic but continue to coparent and raise their boys together as best as possible. From potty training (which they are still working on) to puberty, this is not a job for the faint of heart. Also, studies have shown some parents of children with autism have the same level of PTSD as that of a combat soldier. You have to be constantly “on”, you sleep with one eye open, and lastly you have to live forever. The constant worry and fear of danger and safety concerns for your child are insurmountable. As toddlers and adolescents, the boys were prone to elopement and wandering, while this has gotten a bit better with age it is still a concern. Since the boys have entered their “teenage” years some neurotypical characteristics like attitude and not listening have surfaced. But the meltdowns and self-injurious behavior have also been exacerbated. One of the boys always seems to be stuck on a certain time frame, date, or outing which will cause constant perseveration, possibly leading to a complete meltdown.

One group that Angie was introduced to in 2022 has been a great resource for her and the boys, the “Xceptional Heroes” of Genesee County. The group provides social, recreational, and life skills opportunities for “differently abled” young adults. They have enjoyed many days at the beach, going to lunch and a movie as a group, and most recently their holiday party. Another positive activity is the Special Olympics, specifically cycling. While never imagining the boys could ride bikes, they have been very successful and enjoy riding recumbent bicycles! And on the topic of things they never thought would ever happen... the boys can say “I Love You.” The boys are categorized as not being functionally communicative although they do have some ability to convey wants and needs BUT this surpasses everything. What started as simple echolalia, repeating lines from the movie “Tangled” has now become a little more than just a nighttime routine. Simply saying “I love you”, “I love you more”, and “I love you most” and having them repeat after each phrase has been a highlight for these parents. On occasion, the boys will now say “I love you” unsolicited!

Though this article is not allinclusive of all things autism hopefully it gives the reader some insight, some understanding, and maybe even a little hope. Parents receiving this diagnosis for their children may go through the 5 stages of grief but coming to the acceptance stage is the most valuable. Currently, there is no cure for autism BUT there is hope and there is help. Reach out to other families who have traveled this road before you. Be willing to fight for your child’s education, health, and future.