Tanner is a 3-year-old ball of energy, happiness, and joy. He spends most of his days flipping through books, swinging on swings, and outlasting any kangaroo in a jumping competition. The energy level he has is infectious. His genuine excitement for the simplest of life’s wonders is a constant reminder for us to pause and enjoy it with him. He’s only been in our lives for 3 years, but he has already taught us many life lessons.
When Tanner was 2, he was diagnosed with autism, global delay, and sensory processing disorder. We spent a large amount of the last year setting up a variety of services for Tanner which has made him the busiest little toddler. Research suggests that years 2-5 is the most effective time to treat and apply some of the therapies he partakes in because of how the brain is developing. As a family we decided to try to do the most we can to foster this brain development and are constantly trying to find new and creative ways to effectively further this process.
Tanner attends occupational and speech therapy once a week and attends Moving Mountains ABA clinic as his “school.” There he spends 23 hours a week doing most of his therapy and learning. He also goes to a chiropractor and is attending open house sessions at the YMCA geared for sensory kids.
Because of this desire to meet the higher threshold of these needs, we struggle as a family in three main areas: sleep, safety, and communication. We as a collective unit are very sleep deprived. Tanner goes through cycles where his sensory needs aren’t met despite being very busy. It makes it hard for him to sleep and can often be found jumping in his bed for hours between the hours of 1-5am. It’s normal for us to see only 20-25 hours of sleep in a week. Sleep deprivation is something we wouldn’t wish on anyone. Tanner’s learning and mood changes, we as his parents struggle to meet the demands of our full-time jobs and worst of all, our health plummets.
The answer to getting more sleep means high activity all day! We were prescribed by his developmental pediatrician, mandatory, rain or shine outdoor time doing high energy activities like running, climbing, and jumping beyond what he would normally do in a day.
The hardest part of Tanner’s medical diagnosis is the lack of communication we have with him. He is working hard and has developed more language through his therapies, but he still isn’t able to communicate his needs effectively. He also isn’t able to fully understand what we say to him. Simple things that a parent takes for granted are a real struggle in our home. At the end of a long day of sensory seeking on no sleep and guessing then second guessing every small task, we tuck him in and say good night and don’t get that “I love you,” that melts the hard parts of the day away. And despite knowing he loves us, it’s hard to not know what he is thinking and feeling every day.
We have a great team of support from family, friends, therapists and now the supporters and families of the Shannon Daley Memorial Fund. While the autistic community is moving away from the puzzle piece as it’s accepted symbol, I feel that in Tanner’s journey we have collected and pieced together some of his most important puzzle pieces and our job as his parents is to continue to seek out the rest to give Tanner his best life, as he would want it, even if he can’t convey it himself- yet!