“I am different. Not less.”
This quote by American scientist and autism spokesperson, Dr. Temple Grandin, hit me as I was scrolling through social media this summer. It made me go back and read it again, research Dr. Grandin, and watch the semi-biographical film, “Temple Grandin,” for the second time. Her life has been so rich.
Our celebration of my son Robert’s birthday this September would have marked his 25th year. We celebrated his twin sister’s birthday on their birthday, but I wanted to honor him this year with the above quote in mind.
“Different”…not the same as another or each other; unlike in nature, form, or quality. Robert was different, not less in so many ways.
He was affectionate beyond belief and generous with his sloppy kisses and legendary hugs. You were a blessed person if he decided he was your friend, deserving of such a display of love. Robert was just that way. His love language was quality time and touches of love.
In his first years, he seemed to interact with others in the same ways that his twin sister, Victoria, did. However, as they turned two years old, he seemed to lag Victoria a little developmentally. We just concluded that Victoria was hitting every milestone early (and she was), so it did not concern us or his pediatrician. We knew he was different, though.
Toddler Robert was adorable! He would smile and giggle freely. Most likely, it was because his older siblings were spoiling him in some way. Watching him spin and dance around in our kitchen whenever music was played became a regular evening pastime our family enjoyed together. We dressed the twins in matching clothes almost every day, and he loved every moment he received attention for matching his sister. But, still, we knew he was different.
Preschool-age Robert began speech therapy when we realized through an evaluation that he was slow to talk and delayed in his word count. That was different for us, too. Soon he needed additional therapies as his seizures increased and, again, we could see that Robert was different.
“In so many ways” really meant “in every way” when it came to Robert being different. His gait was a little off as his mitochondrial disease and frequent seizures caused muscle weakness and made it increasingly difficult to walk without assistance. This pattern of increased muscle weakness along with sudden “drop” seizures made it necessary for him to wear a custom-fitted medical, protective helmet. Eventually, a wheelchair was introduced into his world of care to keep him safe. More differences.
Being different is rarely convenient. Robert’s bed was different from Victoria’s. Though the twins were extremely close, we had to separate Victoria from him out of necessity to accommodate his medical equipment needs and her need to sleep soundly at night. His Posey Enclosure bed was an all-in-one hospital bed designed to help keep him safe at night. We were grateful for the protection this bed afforded, but it had to be in our home’s living room because of its size for several years.
As the years passed, and we moved in and out of San Antonio for military assignments, we found ways to make several houses “work” for everything Robert needed. Several years ago, we were blessed to build a house that was different enough to accommodate Robert’s care more easily in our home. I really did not know what I needed, but when my sister pointed out a new neighborhood to me where we could build, I knew it was the right place for Robert to grow.
When we finally decided that we would build right before one of Chris’ deployments to the Middle East, I met a young lady who showed me some house plans. I immediately fell in love with the potential house and was grateful for her kindness and expertise. She listened to my story of how I needed certain things to be just right in this home and never hesitated in her execution of the plan to make this home for Robert…different.
She talked of wide hallways to accommodate a wheelchair and made sure the front walkway had no steps so that Robert’s wheelchair could easily enter our home. She changed the back deck specifications so that his wheelchair could move from the garage courtyard, around the back of the house, and onto the shaded veranda. We even dreamed together with our durable medical equipment (DME) company and came up with a plan to quickly provide a wheelchair accessible shower sooner rather than later. She understood completely and has since become one of my dearest friends. She knew Robert was different and that he would need modifications to her builder’s plan.
His very large Posey bed would now fit into a bedroom set up just for him. His wheelchair, that was increasing in size as he grew taller, would now have a corner of its own in his bedroom. One year, Robert’s room was painted with his favorite SpongeBob Squarepants and Spiderman murals skillfully added by another friend. (So many friends contributed to his different life!)
We built Robert a very different, shallow pool in our backyard to encourage his aquatic therapy. It has non-slip pool decking, and it is proportioned to accommodate a pool chair lift he once used. Its underwater surface is smooth and different so as not to scratch the skin on his soft feet. It can still hold an umbrella in its shallow end that once gave him shade. It is different, but not less.
When he eventually needed a greater amount of assistance moving from his bed into his shower chair, we installed a ceiling lift system to lift and transport him safely from one room to the other. It was a masterpiece installed by very specialized workers. When we realized that his specialized therapy bike needed a place to be ridden safely, we added a courtyard iron gate that would protect Robert from the street traffic, but still allow him to see the neighborhood kids playing out front.
I feel like I just gave you a house tour and an equipment list! Why? I want you to totally understand what families do who care for their child with a disability at home. I know so many families that did not have the challenges that we had, nor the same medical insurance or resources. But each family I know has had to come to the realization, at some point, that their child with a disability IS different. This means that, although different is not less than, the journey may still require much thought and planning.
Was I knowledgeable in the beginning about the different things Robert needed? No. Most of the time when it came to DME, I listened to Robert's therapists and equipment specialists and got whatever they suggested would help him. I trusted them because they knew Robert was different, and they never treated him as less than.
If you need to be the one who calls the shots when you start to see what is needed for your loved one, young or old, I hope today's post will be helpful. It is just my journey. Yours may look very different, but it is important. It is not less than. I know you can do what is needed.
I love this quote that summarizes Robert’s life, for me, as it describes Dr. Grandin:
“Her gift to the world was being different.”
Listening Library: Tears on Your Face (Bethany Barnard)