Set it down.
These three words are easy to say and at times inconceivable to follow. Parents wear a weighted vest for their children with autism, disabilities, special needs, neurodivergence, differences, and a multitude of other “call it what you will” labels the world lays down for them. This is just what parents do. No questions asked. Reminders come in the form of muscle strain, overuse, fatigue, and a normalized hypervigilance which finds a way to seep in like water.
Set it down.
The words are always there. Words that are not an option. Our eyes are open to all that really matters, and to the lessons we have found.
Back to our story…
We made it through most of the hot summer. There is nothing more welcome than the cooler August days. No official support in place. The paperwork, the interviews, the proof, and the endless waits. We graduated to the first part of the DDA acceptance. Part one of what matters. The next step is the hardest. The step where emails are protected and connections are blocked – the EDD. Parents who understand this process just know.
Parents subject themselves to this dance. Ridiculous as it may seem. A dance of systems unprepared to work together. Systems that are scrupulous in details and calculations. Ironic systems that have mastered the art of ignoring external noise. Systems with perfectly tinted windows, still within legal range.
Set it down.
We ignore these words when it comes to boundaries. When it comes down to our children’s well-being. When it is about so much more. We refuse to set it down when it pertains to mental health. When self-esteem and futures walk on a thin line. We do not set it down when it protects our peace. When it keeps us all safe. When the logical answers seem to only hurt us more. We tried that once, and too many times before.
There was a time just a year ago when we had to text or call when we got home. We had to put the dog outside just to open our door. We had to hide packages that were delivered to the front porch. We let these accommodations evolve naturally. We let them fade. We did not bend or push. We watched them slowly disappear. When you look back the answer is clear.
When we thought ABA was the answer. When we knew it was not. When we walked away from the false smoke and fear from the school system. When the “they don’t understand” was a microphone in my ear. When authenticity, acceptance, and the IDEA was crumbled in the trash long before Jake entered the room. When he wore the tough face longer than we knew.
When it broke him to pieces. When it broke us too.
When we set it down together. When we had to.
The magnitude of what we wait for. Self-direction. Jake’s terms. The buy-in paramount to invest in.
Our stories are different, but somehow the same. Painted in good intentions and what we now know. A reminder that it is ok to walk away. It is ok to say no. It is ok to have boundaries. It is ok to prioritize peace. It is ok to walk forward and then decide to turn around.
And it is more than ok to not set it down.
