I am starting this just a couple of hours after posting Monday’s blog. I will finish it sometime today and post it on Tuesday. It seems important to share what might seem silly to some but might help others accept their own disappointment.
I just reread several of the posts where I hinted about my feelings but don’t believe I actually shared my own disappointment realistically. In Regrouping AGAIN..More Communication by Behavior I shared that he was knocking over furniture, etc. on Thanksgiving Day. I didn’t share that he broke an entire set of Thanksgiving things. They were only Walmart cheapies of salt and pepper shakers, gravy boat and sugar and creamer set. He had been good with them for three or four years so I felt safe to set them in the shelf between the base of the china cabinet and the hutch top.
In the 10/20/05 post Communication by Behavior, we talked about the rejection and betrayal you feel when someone you love punches or abuses you. While we understand and accept that our children can’t control the behavior without our intervention, it still hurts both physically and emotionally.
Saturday we had a brief episode where Billy Ray knocked the pepper shaker that goes with the lighthouse dishes that he and my husband got me for my birthday a few years ago. Monday morning he had an incident during his chores where he knocked everything off the counter he could including the last lighthouse sugar bowl (he broke the other one a few weeks ago) and a spoon rest that I like. They are only a cheap set but they were meaningful to me.
I rarely allow myself to go with my disappointment but today it is there. There is the realization that these things are going to happen from time to time. I can choose to allow the house to become institution like which is very depressing for me or deal with the disappointment when these events occur.
I know why the incident happened Monday morning and we can fix it. I have tried to teach his relatively new support staff not over “rapid cue” or “over cue” Billy Ray. It agitates Billy Ray because he does not have time to process the first command or respond to it before the next one comes. Processing time is slower for him since the seizures at 14 years old. Maybe it was just one of those things you have to experience for yourself to understand. It is natural for this staff (one of the best we’ve had) to want to guide Billy Ray to do the best job possible so he over cues. This morning he realized that he caused the problem by too many cues about which slot to put the silverware in the drawer when unloading the dishwasher. It was really a good thing because he learned from the event and I am glad for that.
As parents we can’t get stuck in our disappointment but sometimes we have to allow ourselves to experience it in our own way before we can go on with creating a life that works for our complex child and the family.
I love a new blog I found through Griffin’s Mom, Lora, Jordan’s Life with Autism, especially her recent post I Think I Have Aliens in My House where Jordan’s Mom is able to share the humor in her difficult day with the kids. Read it. Great for comic relief.
For me, allowing myself to feel the disappointment and getting a break from Billy Ray, if possible, helps. Then I rant and rave to the Lord as I try to follow the lighthouse concept. I can always vent to Him. Then I ask for wisdom to make things work for Billy Ray and the family. I get strength from admitting my disappointment and asking for that help.
I don’t want to close without making a point that could have been missed above. The life we create, including schedules, visuals, etc., has to work for the family as well as the child. That is something too easy to forget. As long as your child is not endangered by your needs you have to consider family needs to. For example, while I do get disappointed if Billy Ray breaks things I am not going to put them all away because I need them for my comfort. I buy cheap trinkets (spoon rests, sugar bowls, etc.) and don’t go with all plastics which bother me. If Billy Ray had pica behavior where he would put broken glass in his mouth I would have to reconsider that because it would be a safety issue more. Where possible family needs are given equal weight. That always has to be re-evaluated by the child’s need for health, safety and development. If there is another way to do things that don’t jeopardize family needs we do that. If it is imperative to his development and safety that’s another matter.
Peggy Lou Morgan