Having lived through the strokes of my brother and my son and ASDs

"It took over 3 years to get a diagnosis of autism due to his regression. Children don't regress into autism don't we all know. I don't care what anyone thinks, our child (who he was) died that day and was replaced with someone else. We love our son, but mourn who he was. This is an atrocity that needs to end. We haven't immunized a child of our since and the two we didn't are our healthiest children by far! Thank you for the article. I hope there are people who will listen."


Atrocity? Frak me. Do people not understand the meaning of the words they use?

Firstly, I'd want to understand why it took three years to get a diagnosis. Secondly, no one is denying autistic regression; it's about 25% of all cases.

Lastly and only slightly tangential but goes well to the idea of suddenly "losing" a person to a brain injury:

My grandmothers suffered strokes. My brother had a significant stroke four years ago which left him permanently disabled. Between his meds to control his schizophrenia/bipolar/drug induced psychosis/whatever it is when you don't have the insurance for a full psychological work up and his stroke damage, he is a very different person. I may mourn the bright bits of my brother from before the stroke, but he dealt with so many demons that are now quiescent that I can breathe a sigh of relief for the "new" him. This idea that there is a constant, unchanging person who can be lost I don't honestly understand. We are our neurons and the beautifully intricate neurochemical soup they fire in.

My son, who has autism, also had a stroke at the age of nine. Centered in his left thalamus, he suffered hemiplegia on his right side. While he recovered the use of his right side, he did not recover complete cognitive functioning. His autism and the damage caused by the stroke impact how he functions and who he is, but I did not "lose" him. Did I have to mourn for what we (he, his father, and I) went through with the stroke, what he potentially lost? I was too busy working with him to recover function, have spent his life working to help him achieve as much as he can. Mourning what I think could have been, should have been, seems an incredible waste of time. You've got now. Focus on the now. We aren't guaranteed anything in this life except that we'll be leaving it. I'm sure my mother thought her three normal children would leave home, live productive lives, but instead she has my brother to watch over and be responsible for the rest of her life. I will have my son and someday my brother to be responsible for the rest of my life. I can hope and work hard for my daughters to achieve sufficient social skills and adaptive skills to achieve independence, but even if they were normal, I wouldn't be guaranteed that a healthy, happy, and independent life would be theirs.

Deal with what you've got and make the best of it. Bitch when you need to, but remember that the more you bitch about it, the less you'll be able to effectively cope with it. The less happy you and the people around you will be.

Gratitude and appreciation make the difference in whether the people in our lives are carried as burdens or seen as companions on a difficult, challenging, and ultimately rewarding journey.


Lisa said...

I'll allow for a period of mourning, lord knows my children's dx's took a long time and had a lot of changes over the years - but my hubby's denial about the worst dx (and true dx for my daughter) it almost broke up our marriage.

The thing is, when the symptoms are bad enough that it throws a family into crisis - it's time to move on and deal with the here and now. After that, you adjust to your new paradigm and learn to live and work with it.

KWombles said...


Yes, a period of mourning, and accepting that there will be future periods where your heart hurts for what could have been, that's understandable and completely human. The year my freshman students and my son were the same age, that was a rough semester. It hurt my heart. Seeing my seven year old achieve cognitive skills my son at almost 20 will never achieve hurts my heart. But, it is not something that does anyone good to dwell on. Accepting the situation and that heart ache as simply part of the territory and moving on is the road I have chosen to take. Fortunately, my husband is on that same road. And when one of us appears to be getting stuck in woulda-coulda-shouldas, the other gives a swift ass-kick and off we go. :-)