When you have a child with special needs, your world changes. It spins differently, acts differently and things can be unpredictable. After a while you learn to navigate the crags and canyons until you pass through your days in peace. Gently rolling from one thing to the next, establishing a routine. Some days are harder than others and you keep going.
If you’re lucky, you gradually start meeting people along the way that will help you and your child in handling their special needs. It’s as if he is painting a picture and all the teachers, therapists, family and friends are helping his presence translate into this picture. You’ll see some areas that are highly ornate and others that are just starting to build up. Each session, action plan and time spent are acts of service and love to help develop this beautiful scene. We all rely on each other and are appreciative of the other’s efforts.
When we received the “shelter in place” warning, we fully anticipated having to adjust therapy at school and privately. Little did we know just how much shifting would have to take place and ultimately the battle of regression. We started off with Zoom calls for therapy. It was far more challenging than what we were prepared for. After a few tries, we realized it wasn’t translating at all. We were crushed.
We were hopeful that the special needs therapy we received outside of school would work as well but we decided against having someone come into our house and the clinic shut down.
So, about 5 weeks in and we are out of all services. It’s freeing at first. You fall in love with this temporary new view of life. Hustle and bustle is replaced by lackadaisical walks, picnics and quality time. You catch a racing and fleeting glance of what life is like minus services, parent trainings and modifications.
Then you start noticing regressions. It stops you in your tracks as you start noting behaviors. The willingness to do schoolwork from a novel location subsides and you start to feel fear. The same fear you may have felt when you saw your child walking a little slower and needing a little more support down life’s winding road.
Unfortunately, there is a group of children that are not going to adapt to this new way of life. Or, have lessons translate from school to home or online.
All we can do is watch. We can focus on putting one foot in front of the other and trying our best.
I’ve spoken with our school about the lack of translation and have been met with understanding and compassion. We will implement compensatory hours when school resumes and when therapy offices open, we will request more hours.
But, during this time of flux, we wait. We will give extra snuggles, provide comfort measures and explain the best we can what has happened. We wait with baited breath to see what remains when the dust settles. Most importantly, we will gather our hearts and hold them. We will reassure our children that they are worthwhile and amazing and that there is nothing wrong with them. That they are perfect manifestations of dreams long ago come to life when they entered the world. And, then we begin again.
Photo Credit :: Lindsay Herkert Photography
