I would open the mail with a smile on my face, and then it would sink.
The dreaded invitation.
Isn’t that awful? That I would look at an invitation and get upset?
Invitations lost their luster.
We had become a socially isolative family.
It happened quite normally, I must say. Taking Declan out into the community was a struggle when he was younger, no matter where we went. To the store, to a Dr.’s office, to a playground – anywhere and everywhere we went there was a problem, a meltdown, him running into a dangerous situation, hitting other kids. I have two older children, and I never faced with them I what I faced with Declan.
So we stopped taking him out for a while. He was safe at home. He was happier at home. We all felt better
The invitations still came then, and we would have a dilemma.
My husband and I knew it was best to keep him home. But we would feel obligated. It was like we were looking at each other over a storm. My husband felt we had to try to see if we could get through the storm, but I didn’t want to try.
It was an adjustment for us all. If we went to an event, we couldn’t let Declan play with the other kids. It was too risky as he hit. Many times we would look away for a second, Declan would hit and we would watch the parent come scoop up their child and take them away while we apologized.
My husband and I couldn’t talk to the other adults for more than a couple of words. We were chasing Declan, so focused on him, his safety and the safety of others. We became party isolative and appeared standoffish. If a meltdown occurred, my husband and I would fight. About what was happening, about why it was happening, how could we stop it to make Declan’s screaming stop.
The diagnosis came, and we avoided social situations
I couldn’t talk about it. I couldn’t say the word “autism” and “Declan” in the same sentence above a whisper for the longest time. But I saw Declan, and for the first time I started to understand what was happening.
We became more autism aware
We became our own watchdogs, so careful about the situations we put Declan in. My husband and I were more aware of what would set him off, so we avoided those things.
My husband and I know where our family was not loved and supported as a whole and avoided those surroundings.
It became clear to us those that minimized what Declan was going through and thought my husband and I (and I guess the clinicians and therapists that worked with Declan) were over reacting. We felt judged. We heard others tell us how much better they could do, “Sure – leave him with me for a week.” We became bad parents, a syndrome which only exacerbated when my daughter was diagnosed with High Functioning Autism
Social media friends changed. Those that I knew forever and reached out to for a quick chat were no longer interested or available. Maybe they don’t know what to say? Maybe they don’t know how to deal with “special needs.”
Guess what? I don’t know either – I am learning as I go.
We have two older kids that we do not want to keep from typical childhood experiences. Sports, activities, parties, events. We want them to experience them all, so they do. We just do not do them as a family all the time.
The invitations are pretty few now. When they come my husband and I still look at each other over a storm. We know right away if we think Declan will do well or have issues, if we are supported or if there is a safety issue. We still feel stress, we still fight but we are trying more outings.
Of course, always travelling everywhere we go with two cars. Just in case.