As I was cleaning out the garage this weekend, I came across the box of items from my son Wyatt’s birth. There was one of his first diapers, no bigger than my hand. I touched the nasal cannula that helped to keep his blood oxygenated while he lay in the neonatal intensive care unit with a VSD and three holes in his baby heart. The adhesive that wrapped a red blinking monitor around his little finger was there too and actually still sticky after nine years. And at the bottom of the box, tucked in reverse chronological order, were his ultrasound scan and a picture of my pregnant belly, before I knew there was something about an extra chromosome happening inside.
My reaction was this:
- I didn’t know he had Down syndrome and I’m glad.
- Wyatt is a blessing I could not have imagined or prepared for any other way than how his coming unfolded.
- Wow, my baby has come such a long way and I’m so proud of him!
I named him Wyatt, which is French for little champion, because of his tumultuous birth, and it’s proved to be more fitting than I could have dreamed. His body fought heart defects to heal naturally and he has overcome so much in his nine years to grow into the beautiful person he is today.
Wyatt was treated by more than a dozen specialists, and before turning two, when he started walking, he was healthy and able to shed them all – except for quarterly ear wax cleanings and regular check-ups with his pediatrician, developmental pediatrician and dentist. He’s a great patient, except at the dentist where he doesn’t like something stuck in his mouth.
The first call I made when Wyatt was released from the hospital was to Ann Garcia of NADS. Ann steered a confused mother in the right direction in terms of not only resources but outlook. Wyatt started Early Intervention a few days later, working hard from the start, and showing his personality right away. This was the beginning of his educational journey.
It was clear from day one Wyatt has a sense of humor and is extremely social. He was always more interested in people’s faces than the moving light-up toys the therapists brought. And music. Anything involving people and/or set to music still earns his attention and helps him focus, including yoga and dancing with his fifteen-year-old sister Sophie (which is Greek for wise and very fitting too).
The books by Libby Kumin, Ph.D., CCC-SLP that I was reading as Wyatt started his schooling with Early Childhood helped us discover that pacing boards would become instrumental in his ability to learn to read. They made it a rhythmic process which resonated like music to Wyatt. And today, as we work on Wyatt’s speech intelligibility, Dr. Kumin is still our expert, including her article on the subject in the NADS News May 2014 issue.
After two years in Early Childhood, SD25 placed Wyatt in its half-day transitional kindergarten. It didn’t provide enough time or repetition for Wyatt to retain information or master skills. The District didn’t offer a full-day kindergarten setting, so we opted to have Wyatt repeat half-day transitional kindergarten the following year. He also took extended school year for a few weeks each summer to help with retention. Still, these two years he met less than half of his IEP goals. We visited the classrooms the District offered to Wyatt for first grade and they were either general education which would have been too fast for Wyatt, or self-contained classrooms that wouldn’t deliver the verbal and social role modeling Wyatt needed with peers. It felt like trying to place a square peg into a round hole. By this point, I had educated myself on Wyatt’s rights to an appropriate education and kept advocating for something better.
Equip for Equality helped us work with the district to find an appropriate placement for Wyatt. The outcome has been fantastic. He moved to SD21 but is still attending school in our hometown of Arlington Heights. At Riley Elementary School, Wyatt completed first and second grade with an IEP that was finally, truly something “individualized” to his needs.
Riley houses a NSSEO program where he is able to receive special education focus for academics while benefiting from interaction with his typically developing peers for lunch, recess, art, music, library, circle time and special events, including the recent choral concert where Wyatt performed songs and percussion with the whole school to an audience of students and families. Wyatt was so happy and proud of himself – something I had never before seen on his face to that extreme.
The past two years with Bev Postema as his teacher and Nicole Witt as his aide, Wyatt has hit his stride and made the most progress academically, socially and emotionally. His receptive communication always exceeded his expressive communication, though now his vocabulary and intelligibility have skyrocketed, along with his math, reading and life skills. He is using the toilet consistently at home and school which has been life-changing for our whole family and his teachers. Enjoying the role of helper, Wyatt sets the dinner table and puts his dishes in the sink. Sometimes he springs to life at 5:00 am to read his Curious George anthology from his godmother Susie.
He has also met increasingly more challenging goals, including:
- Strengthening core muscles by performing standing long jumps and balancing on a single foot.
- Expanding verbal skills by participating in a five- step conversational turn-taking task (greeting, delivery of information, comprehension of information, etc.) while remaining on topic.
- Keeping a dry mouth (positive framing for no spitting), having hands to self, and following directions, which he is achieving 91% of the time.
- Using the “touch math” method, Wyatt computes a set of two digit addition problems involving regrouping of numbers.
- Counting the value of a set of mixed coins.
- Reading 56 words per minute with 12 or less errors.
- Reading Story Town for Second Grade and comprehending stories with three written/picture answer choices to locate the answers for who, what and when.
- Constructing complete sentences verbally and in writing with picture and word cards.
- Printing his name in a defined space.
One of my best moments during an IEP meeting was this year when Wyatt’s teacher summed it up: “He’s one of the most popular kids at school.” I could see it being true when I’d take Wyatt to movie nights at school – kids left and right asking him to park his sleeping bag next to theirs. Yes indeed. He is embraced. He is happy. He is thriving.
The social butterfly who turns nine this month continues to spread his wings this summer as Wyatt returns to his beloved Camp SOAR in Lake Geneva, WI, for outdoor merriment and exploration with his friends and counselors during a week away from home. And while he’s gone, I’m going to enjoy a quiet house for a bit … but know something’s missing. That something is Wyatt. His zest for life that I could have never imagined and now can’t imagine life without.