Hope: Raising A Son With Special Needs

I absolutely hate when people say "Oh yeah, my son does that too." Or "yup, all kids have special needs of some sort or another." Or another common response that rubs me the wrong way is "I know exactly what you're talking about." For those people are talking about their typical children. And throughout my life I have come to know that Willie and those typical children are far, far apart. I know I am right, as I have three other children and the challenges that they face although real, sometimes quite difficult, and important, are nothing like the ones that Willie faces.

Yesterday I was talking to Willie's psychiatrist. Willie is doing badly right now with daily behavioral and emotional outbursts. We are worried about him. My monthly visits with his psychiatrist are much-needed.

Halfway through the session, the psychiatrist said one of those comments that I absolutely hate. But somehow, in the context, and how he said it, made all the difference. We were brainstorming ideas of how to help Willie feel happier in life. This psychiatrist stopped me and said: "Willie is going through a developmental stage. The issues he is struggling with are quite similar to other 23-year-olds. He is wondering who he is? Separating from you all, his family. He is questioning what his role in life is? What he is to do with himself?" Surprising myself, I breathed a large sigh of relief and felt a beacon of hope I haven't known for quite some time.

For I am one of those people who compare my son Willie to other young adults regularly. Those with special needs. Those without special needs. And to hear that he is in the middle of all the angst that other 23-year-olds are struggling with, from the psychiatrist who talks to 23-year-olds daily, felt like things would get better one day. Sure the psychiatrist was referring to typical or non developmentally-disabled young adults. And believe me, I am well aware that Willie has some giant limitations. But somehow, comparing Willie to that typical young adult gave me all the hope I needed.

Nothing To Say: Raising A Son With Special needs

Willie is struggling currently.  He reports that he doesn't like himself. The other day he told me that he fears he will become his animalistic self again.  Furthermore, he wonders why he is feeling so sad, angry, confused.

These feelings made for a difficult and depressing 2 weeks during the Holidays.  Willie's feelings manifested themselves into an angry and oppositional young man.  He refused to get out of bed most days and didn't want to participate in much during this time.  

We are seeking help and trying to help our sweet, troubled young man. Visits and communications with his Psychiatrist to adjust meds, conversations and brain storming with his house parents to get him up and moving to increase endorphins and health, and lots and lots of worry.  And a muteness. 

SO I have nothing to say, hence my blog is empty these days.  When I am in one of these "Willie crises," I cannot talk about it. Ask any of my friends and family.  When we have these troubling Willie periods, I retreat and am silent. It is a predictable cycle.  

Here's to hoping I can write a fun and happy or at least an expressive and tantalizing BLOG entry soon...

Willie's People: Raising A Son With Special Needs

When you lose a friend, grief stirs up more than you bargain for.  This certainly isn't a blog about grief, but as a Mom with a Special Needs son, I am all too familiar with Grief and all it's nuances. For no matter your child's disability, you, at some point, must grieve the loss of your typical child.

So my very good friend passed away 12 days ago.  It was not unexpected as she fought Stage 4 Breast Cancer for 12 long years. Her youngest daughter and my daughter are best friend.  Best friends since they were babies.  A recent Facebook post from my dear friend attested to this friendship, when she posted a darling photo of our girls hugging, and commented such: "These girls have been "cooing and drooling" on each other from birth! GREAT Besties for 13+ years!! So thankful for their love for each other!! Love me some "Heidi Hope"...what a lovely friendship God has supplied!"

As I grieve my friend, I recognize all the stages, phases, and feelings that come along with this terrible process. I focus on her husband and children's sorrow and needs and try to stay away from any focus on myself.  I try so valiantly to hold this special family up. But my own issues creep in, of course. And one unexpected feeling has been the loss of one of Willie's "people." For as he has grown-up, his support system seems to have gotten smaller and smaller.  His challenging behaviors have successfully alienated many family friends. Willie's development into an adult with Special Needs is not easy for most.  

But you my friend never left his side.  You believed in him and held him up through the years.  I never had to apologize for him when your daughter was at our house and Willie exploded.  You always wanted your kind daughter to tag along with mine as we visited Willie at his Special Needs communities. Your daughter mimicked you and saw these folks and my Willie as just people. People to be loved and to spend time with. I never had to feel embarrassed when Willie wouldn't look at you when you talked to him lovingly and patiently. When he still wouldn't look up or answer as you continued to have a Willie conversation with him.  As you laughed and even hugged him.  I never cringed when you spoke to Willie as it was always with respect towards him as a wonderful and whole human being. I will miss your enthusiasm, acceptance, and that sparkle in your eye as I shared with you another Willie story, for you always made me feel heard and understood. 

I will miss you my friend for so many reasons.  And again all things return to Willie in my life.  I will miss your unconditional love for Willie that you so naturally gave him and us throughout the years. Thank you for that rare gift that you graciously shared with our family. Good bye sweet girl and may all the Special Needs people you share heaven with surround you with that same kind of love and acceptance. 

A Facebook Post Worth Reading: Raising A Son With Special Needs

As a parent of a child with Special Needs, I subscribe to many different Facebook sites that discuss having a child with a Disability.  I also have many friends who are parents of children with Special Needs.  These posts enrich my life tremendously. The reason I write this Blog is to share with others what I have learned from my son Willie, my own son with Special Needs. When I came across the following post on Facebook, I read it voraciously. The more I read, the more my head and heart were screaming YES!

So in order to share the wisdom from this article about raising a child with a Disability, I am called to share this fabulous piece:

http://www.huffingtonpost.com/bonnie-zampino/is-autism-the-real-public_b_8191918.html

Muscle Memory: Raising A Son With Special Needs

On the way to take his driver's test, I told our 16 year-old son that his body had the muscle memory to parallel park and to stop thinking about it. But what about emotional muscle memory? That's my term for sliding down a dark hole of familiar and very negative feelings. Being around Willie for only 30 minutes yesterday, after a month apart, is how long it took me to travel down that nasty emotional muscle memory lane.

Willie walked in the door for Columbus Day weekend and I immediately told him we needed to get his signature notarized for a replacement Disability Parking Placard. Maybe that is what set him off, as I am sure he was looking forward to chilling at home.  Either way, on the 15 minute car ride to the Notary, he walked down a path of catastrophe and self-deprecation that he knows so well.

And as he continued this way, my own muscle memory set in.  Within moments, I felt pummeled and drowning in all things negative about Willie.  It's a path that is well travelled and etched permanently in my heart and mind.  I never before thought of it as muscle memory, but it is.

So as Willie easily skidded down this sliding board of "I am quitting Newspaper class due to Mary, (an explosive student) who might hurt me" to "I can't ever be in a class with Mike again," I slid into my own destructive thinking. I can't do this, Willie is hopeless, feelings of despair, overwhelm, and doubt about Willie and his program, more than I could handle.

The thing about negative thought patterns and reactions is it is hard to get out and see a wider, more hopeful view, to interrupt the spiral.  To ask someone with a Brain Injury to snap out of it is asking quite a lot as I, neurologically intact, was stuck as well.

Then we were out to dinner and the pattern continued.  Willie was perseverating on bad things, bad people, bad events with no way in to infiltrate or help him.  But all of a sudden an old friend from the past, who also has Special Needs, stopped at out table, heartily patted Willie on the shoulder, listened to him complain about the "bullies," and gave him some advice. This friend said to ignore them.  The same advice I had been handing out all afternoon.  But Willie was able to hear this friend. And that was it for Willie.  This encounter had snapped him out of his slump.  His posture changed as he sat up in his chair, his voice lightened and resembled Willie's true, sweet self, and we began to talk of happier things. Later, Willie said "he sure is a good friend," and you could see the self-doubt, self-recrimination, and narrow thinking all subside.  Maybe Willie just needed to see that he has a friend, is likable, and felt heard.

Living with Willie, you learn you must celebrate when he is happy and positive.  Unfortunately, your own sorrow and despair are hard to escape from. It's that muscle memory concept.  The more you do something, the better your body and mind get at it, so that it is almost automatic. Switching to a happy mood is not so easy when you are raising a son with special needs.

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

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."