I heard it once said that those of us with special needs children suffer a loss. But when we first hear about our child’s diagnosis, it often at times, stays festered up inside. Keeping us full of denial and not wanting to believe it is true. We aren’t physically suffering a loss. We suffer the loss of a dream we had. We have missed expectations and missed experiences.
This is not how it was supposed to be. When bringing a child into our family we imagine what their first day of school will look like. Not, will my son ever speak? By this I mean will he be able to verbally communicate what is going on? You look forward to picking your child up on the first day of school and asking them how their day went. For the past few years of my son attending a developmental preschool, that is a question I have been unable to ask him. I have to rely on his classroom teacher to write it down. I have to rely on his therapists to tell me what they worked on in therapy and how well he did or what issues they had. This is not what it looked liked as I dreamed about my child’s future during pregnancy.
You look forward to activities you can do as a family. If we don’t learn to accept that we are suffering a loss and integrate it into our lives, we will just continue to get knocked down over and over.
Forget about date nights with your significant other because your life turns into revolving around your child. At least for my family, it has. Or worse yet, trying to visit another family or attend holiday celebrations. It’s hard, as much as we try to explain to our family what our son can and cannot handle, they just don’t understand. Is it their fault? Sometimes I feel yes, but then sometimes I remember they don’t live the life I do. They don’t see it on a daily basis to understand what we try to explain. Still, though, more often than not, it saddens me.
What about a simple trip to the store? Up till a few weeks ago, we hadn’t been to a store as a family in months. The experiences of taking your child to the store to get a toy? I can count on one hand how many times we have been able to attempt this. Most end with my husband taking our son out to the car while I get what is needed.
I feel like, in a way, we don’t just try to meet our child’s needs but also end up trying to meet their wants.
I grieve the fact that playdates are not something that will probably happen. I joined a MOPS (Mothers of Preschoolers) group where we live, trying to socialize. Make fellow mom friends and allowing Graham social interaction with other kids. Unfortunately, it was not anything like what I imagined. I attended one play date which consisted of me chasing Graham around. I didn’t get to interact much with the other moms and it broke my heart to see my son not socialize with other children. All he wanted to do was run.
Our family outings are rare unless it’s for a doctor’s appointment and then we try to make a day of it. The only day of the week where my husband doesn’t have to go to work, Graham doesn’t go to school, or have therapy is Sundays. I grieve the loss of just our family time, just us three. I struggled with deciding to put Graham in so much therapy at such a young age. I mean who doesn’t want their child to have time to just be a kid?
We started early intervention services at 18 months old. He started going to a developmental preschool Monday through Friday from 8 a.m. to 3:30 p.m. He receives speech, occupational, and for a year he received physical therapy. But when we started having more issues with his behavior from the frustration of not being able to communicate, we had to look into additional therapy. So we applied for home ABA therapy and after a 6-month wait, we now do 20 hrs a week of that as well.
Did I ever imagine grieving over things lost with raising an autistic son? Of course not, I imagined a life full of outings, conversations, and family gatherings. We don’t just stop or give up. But things look different for us.