“I hope you have a son just like you”
This blog post is from Marianne. Today she is sharing her family’s autism journey. She’s a loving, involved grandma and her story illustrates the gains that can happen over time with the proper support. I hope her story encourages you in your autism journey.
On 24 November 1969, the caseworker handed us our baby boy. He was so tiny-- just 5 lbs. At two weeks his legs were still drawn up in the fetal position. New-born clothes were too big. His toddler days were not unusual even though we knew the challenge of raising him required a different approach. He had such a tender heart; I felt much more protective of him than his older, strong-willed sister.
The tags on clothes bothered him: we cut them off, trimming close to the shirt. He cried when we washed his hair saying it hurt. What he ate was limited: fish sticks, French fries, macaroni and cheese, peanut butter sandwiches, “warm” hot chocolate, scrambled eggs, and Burger Chef hamburgers with catsup only (don’t let the pickle and onion touch the meat; you couldn’t just take them off and pretend they were never there).
He quit after his first t-ball game: too many people were yelling at him. His preschool teacher noticed that it was difficult for him to engage a pencil correctly, but that’s okay, she said. “He is smart; he can hire a secretary.” He learned to read before starting school and had a fantastic vocabulary.
Many times, his behavior was out of control causing one of us to remove him from the situation. Restaurants were out of the question and family get-togethers were difficult.
At one point during elementary school, I told our family doctor, I think he’s hyperactive. He looked at me and said, “No. You are just under-active.”
In school his writing continued to be a problem, noise in the classroom distracted him, and continual failure along with bullying caused emotional issues. I had tried various diets and herbal remedies: removing red dyes from food and controlling sugar intake. Nothing worked.
One day as I listened to WBCL, they were interviewing a doctor who listed ten things that indicated hyperactivity. I sat down and wrote that list and checked off most of the ten. Wow, I thought. This describes our son.
That same day, I made an appointment with the doctor in the interview, Dr. Keyes, a pediatrician in Fort Wayne. He stood outside the door of the examination room and observed us. He had no doubt that hyperactivity was the problem and prescribed Ritalin. (Yes, we allowed medication; after all, if he were diabetic, wouldn’t we allow medication?)
In those days, HD (hyperactivity disorder) resulting in a LD (learning disability) was the main diagnosis made in the education setting. About that same time, our school hired our first learning disability teacher. Hoping she would be able to help our son, I was thrilled.
I consulted my psychology professor at St. Francis who agreed to test him. She concluded that he had significant learning problems, and we presented her findings to the school. He was denied access to this new program and special teacher. I requested another conference and invited my professor to the conference. Thanks to her, our son was granted an IEP (individual education plan) which remained in place throughout his school years and was granted access to the LD teacher’s help.
Somewhere during those frustrating years after an especially rough day, I said to my son, “I hope you have a son just like you!”
In 2003 my grandson was born and like all grandmothers, I was head over heels in love with this little guy. I had retired from teaching, so I had lots of time to be involved in his life. One day while sitting in his highchair, he began flapping his hands. I took ahold of them, and said, “Don’t do that!” I shuddered at what I feared. I’ve learned since that “flappy is happy.”
Now, much is known beyond the LD and HD labels our son received. It can be confusing when some of the following “alphabet soup” of acronyms enter into discussions: LD (learning disability), NLD (non-verbal learning disability), ADD (attention deficit disorder), ADHD (attention deficit hyperactivity disorder), ASD (autism spectrum disorder), AS (Asperger syndrome, a high functioning form of autism a term no longer used), ED (emotional disability), ODD (oppositional defiant disorder), OCD (obsessive compulsive disorder), PDD-NOS (pervasive developmental disorder not otherwise specified), SPD (sensory processing disorder), SPED (special education), HD (hyperactivity disorder), SLD (specific learning disability such as dysgraphia).
Likewise, there are the acronyms for helping our children, such as IDEA (individual with disabilities act), FBA (functional behavior assessment), OT(occupational therapy), ABA (applied behavior analysis) PT (physical therapy). There are terms associated with some of these behaviors like stimming, meltdowns, LRE (least restrictive environment), 504 Plan, Medicaid waiver, case conferences, psychological evaluations, and assessment.
Childcare for my grandson was hectic and changed frequently as he was “kicked out” of one after another care facility. Because of these experiences, he was evaluated by several psychiatrists, including one at Riley Hospital. When the school year began, we quickly requested a conference to get him the help he needed. It was denied.
It shouldn’t be so difficult to get services for children in need. It is! It will continue to be so: more children are being identified, and there is a need for more special education teachers. I mistakenly thought we could save a lot of time and angst by requesting services early. We found out the school had to do their own testing and assessments while watching our boy flounder.
My grandson had tumultuous kindergarten and first grade experiences as did the teachers. Multiple times every week, I made the 45-minute trip from my house to pick up a child asleep in the principal’s office. He was absolutely exhausted from trauma and the meltdowns that followed. His first-grade teacher requested a psychological evaluation; because the principal was attuned to what was happening, the evaluation was granted. We withdrew him from school in April after he knocked over a bookcase and threw a desk. His classmates were afraid of him. I sympathized with his classmates, with him, and with his teacher. Thus began a new adventure: homeschooling. Fortunately, he was placed in an ED classroom the following fall.
I had absolutely no inkling when I said to my son. “I hope you have a son just like you” that I would be helping to raise a grandson. But here I am! Because my son was granted custody in his divorce, my grandson is with me through the week.
My grandson was diagnosed with high functioning autism (Asperger’s) as well as SPD, ED, and ODD. Because of networking with other parents and grandparents and his pediatrician, we eventually found our way to services. I am so thankful for the wonderful ED teacher he had for three years in elementary; she saved his life (and probably mine). The Medicaid Waiver provides him with ABA services, a behavior therapist, a recreation therapist, and a music therapist, and now a vocational rehab specialist. It takes a village to raise a child with special needs, and I am thankful for each member of our village.