Tuesday, September 29, 2015

Vulnerable: Raising A Son With Special Needs

Sharing something this current and intimate makes me more vulnerable than I am comfortable with. But I imagine this could help other families with their struggles and that is the point of this blog.  So please read the email I sent to Willie's school today, after learning yesterday about a physical altercation between my precious Willie and another student. Thanks ahead of time for your sensitivity. I have changed the names for confidentiality.


HI Peggy,

I just wanted to give a bit of history about Willie and Jon and also about Willie himself. Charlie and I are concerned about the two of them being together now that there has been a physical incident.  We realize it is impossible to keep them apart and want to work with you all to come up with a some strategies to help Willie cope and to keep everyone safe, emotionally and physically.

First, Willie holds grudges. This is in part due to his "perseverative/anxious" thinking and in part due to his extreme sensitivity to people who are mean.  Second, Willie is afraid of mean people, even if they are not really scary.  He feels much more vulnerable than he lets on.  Jon and Willie, as I stated, have a long history of not getting along.  Willie's part in this is taking Jon too seriously and getting stuck in the negativity.  It is true Jon has teased Willie and said mean things to him in the past.  I have witnessed how Jon presses Willie's buttons on purpose.  In a cognitively intact individual, one could infiltrate these episodes and reshape their thinking.  One could try not to personalize these episodes.  But with Willie, he stews on them, has no perspective, feels hurt, is actually afraid, and gets angry.  That being said, you may already have intuited all of this.

On to some possible solutions: Willie should definitely talk about this with his Therapist.  I have copied her on this email and will contact her of the situation today.  Seeing that this situation goes way back and is deeply embedded in Willie's psychology, please tread sensitively with Willie.  He clearly cannot hurt Jon and we will speak forcefully with him about this.  However, he needs extreme care when looking for solutions.  One strategy that works with Willie is to validate his feelings that he may not either be aware of himself or at least not have vocalized.  Another tool is to get Willie to come up with solutions.  Something like: "Jon will be in your class, so what can we do to help you be tolerant of him?"  Another possible and useful statement is: "When you feel yourself scared of and/or angry towards Jon, what can you do to keep everyone safe?" Finally, Willie has responded positively to social stories about tough situations in the past. I urge you all to create one for him that reflects his complicated feelings, clearly states that physical aggression is forbidden, and provides better alternatives to coping with these negative feelings. 

I am racking my brain for other strategies, as this is definitely a pattern for Willie.  We still hear about a little girl in 3rd grade who frightened Willie.  There is a long list of others who Willie perceived to be mean and scary, some real, some imagined.  We certainly want Willie to learn to deal with people he doesn't like.  And please know, we are saddened and upset that Willie shoved Jon.  But we also want you to understand what we are up against in Willie's history.  I have taken the liberty in sharing this issue with Ava and Lily, as I am sure Willie is continually talking about Jon, as that is his pattern of perseveration  The more teamwork the better.

I appreciate your patience with my suggestions and hope you are not offended as you did not ask for my input.  My mama bear is up on two legs and cannot keep her mouth shut.  Thanks for your sensitivity to Willie in this matter.

Kim

Saturday, September 5, 2015

A Gentleman: Raising A Son With Special Needs

We live in a rhythm with Willie. Every summer he spends at least 6 weeks home, to return to his Camphill program in September.  Willie's anxiety begins to mount on his first day home about when he has to "Go Back."  Even though I make him a beautiful visual calendar to show him the amount of time home, his anxiety never goes away about "Going Back." Willie really struggles with time and 6 weeks ofttimes must feel like 6 days or even 6 hours to Willie.  Even though he likes the Camphill programs he attends and is a valuable community member, he still is haunted by the anxiety of "Going Back."

So today was the day. Came to soon for Willie I am sure. Never comes soon enough for me. Willie had his best summer home ever.  His bouts with anger and supreme negativity were less than usual. Willie's interactions with his siblings continue to improve as he develops and certainly as those 3 siblings mature as well.  We spoke endlessly last night, while out for a very enjoyable and rare dinner at a restaurant, about all the activities and people to look forward to back at Soltane.  I detailed how his second year at Soltane brought with it clarity, as he knows what to expect.  It didn't matter.  In the car there, he barely spoke except to tell me he was still nervous.

In years past, Willie would linger in the car until a friend would come egg him out of his nervous seclusion.  Last year Willie wouldn't tolerate the parent/student meeting and refused to join. This year, he got right out of the car and immediately found Stacey, the co-worker he adores, who he will be living with this year.  He emphatically told me he would not attend the meeting.  I let it go, for that is what one must do as Willie's parent.  To get into a power struggle with Willie about something un-crucial, especially with his agitated state, is just something you don't do.  I told Stacey to handle it.  I was expecting his typical refusal.

Instead here is what I saw when I was on my way to such meeting:

Frankly I couldn't believe it.  And after that, things just got better and better. Willie sat in the meeting the whole time, over an hour.  He wouldn't introduce himself when asked, but did stand up with the rest of his house during introductions.  It was amazing.

Raising Willie has been the most challenging thing I could ever have imagined being asked to do.  I write lots about how hard it is and how sad I am.  But today was a stellar day.  I am wrapping this around me like a cozy blanket and just reveling in this feeling of peace, for as long as I can.

Oh and afterwards, after I spoke with Stacey about Willie's walking with her to the meeting, she said: "He is always such a Gentleman."