HOLIDAY CHEER: Raising A Son With Special Needs

Below is part of an email I sent to the Directors of Willie's new program.  In the spirit of the holiday season, one of good cheer and honesty, I share a vulnerable slice of my Willie life. The names have been changed to protect the innocent...LOL:

"I want to share some thoughts and observations I have about Willie.

First of all, Willie seems completely oblivious of problems within his new home, including any issues with Jake or Matthew. (Jake is one of Willie's new housemates and Matthew is a staff member.)  As you know, Willie tends to perseverate when things are upsetting him, so his optimism about his new house is hopeful and genuine. Willie says that he and Matthew got into a fight: that is all. I want to be clear that neither my husband nor myself hold any grudges against Matthew.  We are completely aware that Willie can push people's buttons and we completely "forgive" Matthew for anything he may have said. My husband felt a warmth and positive authenticity yesterday from Matthew when he picked Willie up. Moreover, he described Willie to appear to be comfortable at the house, seemingly fine with Jake as well.  Which brings me to my next thought, which has to do with Willie and his "reputation."  I know you all have to take things that come out of Willie's mouth seriously, especially threats to others. But I fear that because of the one incident with his old housemate, Willie's reputation has been marred. I would offer that it is possible that we all need to ignore any threats Willie may make or did make towards Jake. I know this may be difficult but my guess is that this type of language will go away if ignored.

My other observation about Willie is that he seems calm and more even then even last time he was home.  I would suggest that Willie's new medicine is doing it's job.  However I am acutely aware of how Willie perceives most words and actions now based on the Behavior Plan Meeting we had. I have noticed that Willie hears my words as criticism and that if I first approach him with a loving or kind comment, he is much more responsive.  I guess I didn't ever realize or want to accept how poor Willie's self-esteem is and how distorted or paranoid his hearing and thinking can be.  

So I guess my message is that I feel hopeful about Willie's success in his new home, despite the issues that have arisen.  In the spirit of infectious positivity, I encourage you all to do the same. For as we know, Willie feels our vibes more then we know."

The Death Penalty: Raising A Son With Special Needs

I don't normally have a thought that includes both the Death Penalty as well as my son Willie. But this piece came on NPR about whether or not those with Intellectual Disabilities could be eligible for the death penalty, and Willie immediately popped into my head. A sad indictment on his current state. This issue is being heard before the Supreme Court currently and is really about how to define Intellectual Disabilities, by state or federally.  Read more here in this USA Today article about the current controversy in Texas. But what caught my attention was the statement about the high or borderline individuals with Intellectual Disabilities, those with IQ's in the 70's. And I immediately knew that Willie is considered high, for so many reasons, among them his eloquent ability to speak and interact with others, as well as his strong reading skills. And the idea that those with Special Needs may not be responsible for killing someone caught hold in my heart and thoughts and hasn't yet let me go.

If you read my blog regularly, you know that Willie is in a dark place.  Read this post to catch up on his latest struggles that unfortunately include harming another individual:  http://whoishetoday.blogspot.com/2016/11/willie-trumps-all-raising-son-with.html
We have been considering how responsible Willie is for all his actions as of late.  For we thought we had all the supports in place, the social stories, the parent check-ins, the prompts, the extra staff, etc, yet Willie still charged his housemate. I realize now that we can talk to Willie till he is blue in the face, and sometimes it just doesn't matter. Willie said he just couldn't take living with him anymore and he just snapped.

This is the type of statement I imagine someone with Intellectual Disabilities might say, after they killed someone.

What I wonder about Willie is if he is not at fault for hurting his housemate, whom he despised, pushed his buttons, and clearly bullied him, then where do we go? For if Willie cannot be held to a standard of personal responsibility, how can we help him, prevent this from happening in the future, and keep him safe? And if God forbid, he ever truly harmed another person, what would happen then? For if Willie is not accountable for his actions, who is? The Brain Damage? And if so, can we give it the Death Penalty?