I take Grace to speech therapy each Saturday morning. We’ve been doing this for years and it is part of our routine. Over the years we have added many items to our routines:
- daily medication
- weekly occupation therapy, physical therapy, and speech
- monthly visits to specialists
- monthly therapy appointments
- visits from respite and habilitation workers and case coordinators
While we were at therapy, I noticed a flyer on the counter. It read:
“Dinner is on Us!”
We are members of the Windrift Ward in the Church of Jesus Christ of Latter-day Saints. Our annual service project is focussing on serving the special needs community. The Windrift Ward Relief Society would like to provide you and your family a meal (or two) to support you and say thank you for all that you do!
Busy day? Lots of appointments? Pull out the freezer meal and dinner is ready.
As I read the flyer, I started to cry.
Being a mom of special needs children is different. And difficult. All the routines we added to our life took time to get used to. At times I felt like I was drowning.
I have noticed that people are unsure how to help families with special needs children. When a child is in the hospital, a baby is born, someone dies, needs are often met immediately because there is a crisis. But having a child with special needs isn’t a short-term crisis. It is a life-long situation.
Our children don’t grow up and suddenly get cured. We don’t do a few months of therapy and “fix” our children. Therapy takes years, if not a lifetime. Medication isn’t a short-term fix. Everything about having a child with special needs is long-term, for life.
I think these situations are confusing for people. They don’t know how to help. If they get involved will they be involved forever?
I have two friends. One has a child with autism another has a child that needed immediate medical intervention that lasted for about 2 years. For friend number two, people rallied together. They helped remodel their house to accommodate this child’s needs. They took meals. They babysat the family’s other children while they were in the hospital. They came and sat with the sick child so the parents could go to church and on an occasional date night.
For my first friend, once she got the diagnosis no one brought dinner. No one offered to babysit her other children during therapy sessions. No one helped her figure out how to contain a child who was an escape artist.
This was the same neighborhood. The same good people. What was the difference?
I believe the friends and neighbors were overwhelmed.
A crisis has an end. Autism does not.
The crisis was life or death. Autism is for life.
Please understand, I’m not angry. I understand people’s hesitation and I’ve learned how to ask for the help I need. People are most often willing to help, they just don’t know how.
So when I saw this flyer, I realized some truly saw me and saw my struggles. They understood. I don’t want to be someone’s lifelong service project. But every once and a while it feels good that someone acknowledges my struggle. That they offer to lighten my burden for just a few minutes.
So thank you Windrift Ward; thank you for choosing to help those of us whose routines are overwhelming. Thank you for serving. And thank you for dinner.