A new norm.

This past Friday I went to a workshop on grief to earn continuing education hours so I can keep my social work license current. I registered for this program because it was inexpensive. At $55.00 it was a bargain compared to many that I receive in the mail. I didn't pick it because of the topic that's for sure. See, years ago I was a hospice social worker and that makes me an expert on grief. Well, expert may be taking it a bit far, but I did assume that not much more could be said about the subject while I was reading the brochure. During the workshop it occurred to me that I hadn't spent much time thinking about grief outside of the context of death and dying in many years. Death and dying is a universal reason to grieve. Society gets that.

I went on to think about the grieving that takes places when one has a child with a disability and made an honest effort to concentrate on the speaker** and apply what he had to say about grief to this area of my life. I intentionally didn't say "grieving that takes place when one gives birth to a child with a disability." I point this out because for me the grieving continues in small ways even now that Ryan is four years old. It was the worst that first year. That first year was my year of magical thinking. In other words I believe I spent a great deal of time in denial and living in a dream world about Ryan's diagnosis; believing that if he had the best services, and the best of my time he'd overcome his delays. Now, before some of you think "Oh, poor Marcy." there is something else you need to know and that is I believe a certain amount of denial is a good thing. Denial gets a bad wrap. Time spent in denial may give one the adjustment period needed to cope in better ways. I feel that was the case with me; I needed time for Down syndrome to become the new norm in my life.

Grief continues to wash over me from time to time. It is usually triggered by an incident that reminds me that Ryan does indeed have a disability. Like today when I went to pick Ryan up from kindergarten Mrs. Hallman reported that Ryan wandered off three times. The first time he ran down the hallway and wouldn't not come back. The second time he opened the door leading to the playground and went outside when he should have been participating in music and the third time he opened the gate surrounding the playground and went into the woods. Mrs. Hallman shared that she was right behind him the entire time, but he wouldn't stop. Amen sister!! I have been in this situation with Ryan so many times. I know he's all boy, but I don't believe he does these things maliciously. I believe he has a difficult time understanding the consequences associated with his actions. It seems to me that Ryan learns these concepts after much repetition. Let me give you an example: Ryan used to jump on the couch almost everyday. So, almost everyday I told him to stop jumping on the couch and to sit on his bottom. After many repetitions he now knows not to jump on the couch and when he forgets and does it anyway all I have to do is look at him sternly and tell him to stop or to sit on his bottom. It works 99.9% of the time. That leads me to believe that for Ryan to understand that he can't run away he'd have to do it essentially everyday so that he'd learn to stop through repetitive reprimands. My theory may seem crazy, but I just think he has trouble seeing the big picture.

I walked out of the school today feeling a bit sad, having once again faced the differences between Ryan and his classmates. Grieving for a moment the skills that he doesn't possess. Grieving because he struggles to keep up in this typical setting. And yes, grieving that this new norm is one that I don't always like.

**This guy did a great job and he did teach me many new things about grief. I'll try not to be so pessimistic about program titles in the future.