Two Tests: Two Very Different Outcomes: Raising A Son With Special Needs

Sandy, my 16-year-old, passed his Driver’s Permit test today. What a happy rite of passage: his first try too. What an accomplishment. It happened that this was the same day that Willie, my 22-year-old son with special needs, failed his IQ test. Who knew you could fail an IQ test.

Here's the backstory. Willie was granted a Consolidated Waiver which includes comprehensive funding from the government for his present and future programs. Now that was an accomplishment. What a process. So now he needed to have an up-to-date IQ test. I explained to the powers that be that this would be tough as he has lots of issues. But that he did complete an IQ test in 2004, would that suffice?

That answer was a definitive “NO!”

So today was the day. We went to the agency. We met the tester, a nice man, and I answered questions with Willie for the first 45 minutes. As his distress grew and grew, as the questions talked about his self-care and knowledge of the community, he became more more agitated. So that wise man said: “Why don't me and your mom go to the other room and finish the rest of this part?” Willie was relieved. You could hear his audible sigh of relief from Timbuktu.

So then we went back into the room where Willie waited and I left. Since Willie needs lots of support, we had talked all about the IQ test and how it just was a procedure he needed to go through. I brought some of his favorite books or rather he picked them out. I had a hopeful confidence that this IQ test could be completed, kind of.

Forty minutes later that kind man, who was testing Willie, came and found me in the lobby and said he was unable to complete the IQ test. When Willie was asked to count backwards, he refused. He shut down. When something is hard for Willie, this is a common reaction. After honest consideration and discussion, we left the agency. The first thing Willie said when we got in the car was: “Boy am I dumb." Yes, you could hear my heart breaking from Timbuktu.

Then of course we went to Target and out to lunch as promised. Willie picked out a new DS game. He had a deluxe mexican burger at Wild Wings. It was nice and cozy. 

Two hours later, I took my other son to get his Driver’s Permit. The experiences were in stark reality to each other and a wake-up call to me about the differences between my non-special needs son and my special-needs son. Did Willie really fail his IQ test? Is that something that can really happen? And what will happen next?

Stay tuned…

The Anti-Explosion Dance: Raising A Son With Special Needs

We all do it. That anti-explosion dance. Prompt. Role-play. Remind. Make schedules. Warn. Make more schedules. Remind.  Plan. Prevent. Plan some more. Anything to avoid that dreaded explosion. For we all know what happens when they pop. There's no going back.

Willie hates to be shaved. He can't shave himself as his hands just don't work well enough. He says he likes the unshaven look. But really Willie hates the feeling of water on his face, that slimy soap.  There's no such thing as shaving cream. That is not allowed in his sensory budget. He hates the feeling of the razor on his face. What if you cut him. Make him bleed. He just plain despises it.

So I plan for the shave. It is a meticulous and intricate process. You have to do it when he's in a good mood. You have to do it when he has something to look forward to. After a very good night of sleep for sure! You have to do it when he has been fed. You have to do it when he is distracted enough with something on the computer. "The Shave" requires quite a battle plan.

I failed recently. My hand is not working as I had surgery. My husband was to shave Willie. I didn't plan well enough. I asked my husband to shave Willie at the worst possible time, right before he had to go back to school. It was a desperate and terrible decision.  I blatantly ignored all the regular rules about avoiding this explosion. He popped. He exploded. It was horrible.

And the worst part of these explosions, as Willie becomes an adult, is his self-recriminations. For always after he calms down, he hates himself for the tantrum. He punishes himself. He gets stuck in obsessive thoughts of self loathing. Each explosion scars his psyche, his self-confidence, his chance of happiness and peace.

That anti-explosion dance: the stakes are so high!

For more information about your explosive child, check out Ross Greene's website, author of The Explosive Child.                         http://www.livesinthebalance.org/

Permanently Disabled:Raising A Son With Special Needs

I took Willie to renew his photo ID yesterday at the friendly department of motor vehicles. Actually the lady who helped really was friendlier than I had could have ever expected. As I observed Willie struggling to sign his name 4 different times on all of the electronic forms, it dawned on me how hard it must be to live with a permanent disability.

Of course, it didn't just dawn on  me yesterday. Willie's hands just don't work. They never have. I try to describe his limitations to other people by imagining wearing thick mittens all the time. He has just recently been able to write his name in small letters, small enough to fit on those little computerized screens.

Two weeks ago, I had surgery on my thumb to help with debilitating and painful arthritis. Of course it is my right hand and that is my dominant hand. Living with a temporary disability, only being able to use one arm and hand, has  shed enormous light on all those who suffer from permanent disabilities. My respect for those individuals  has grown tremendously in the past two weeks.

While I watched my son Willie, struggle to write his name

on a small screen, I was really taken aback about what it must be like to live that way every day. As I struggle with my left hand to write words, my frustration and helplessness mounts and mounts. As I struggle to brush my teeth every day and to even put my hair in a clip, I wonder what it must be like to be like that all the time. And then I look at my son's teeth that are never quite clean, whose hair is never brushed, and I have a complete new understanding and appreciation of what it must be like to be him. To have a permanent disability.

Thanks to the talk writing feature on my iPhone, I am able to get this blog posted. For Willie to be able to use such technological advances, requires complex executive functioning skills that he too is lacking. But I'm getting ahead of myself. For that is a post  for another time.

A Girlfriend?: Raising A Son With Special Needs

I was innocently catching up on Parenthood last night, and my phone annoyingly interrupted me with a text message. This was the content of the message:

                                         "Look at these guys on their little date"                                                

Well, I certainly had to pause my episode of Parenthood to deal with the flood of emotions from this kind text. My first reaction from looking just at the photo was how fun, Willie and Celine are such good friends, and that is indeed rare for Willie.  I also studied the glass of beer Willie was drinking and noticed his straw.  He loves straws and I thought now that's different.  But then I read the words and my heart skipped a beat, my stomach dropped, and I was afraid.  For Willie and Celine have known each other for over 5 years and it has been a wonderful friendship.  Now that they are again living in the same community, I know their friendship has grown and deepened.  But the idea that they may be dating, or at least thinking about dating, takes my breathe away.

As I do often in this blog, I compare my reaction to Willie to my 19 year old, Willie's closest younger brother.  And you can bet your bottom dollar that if this photo was of Teddy and a potential girlfriend, I would just be beaming, so happy for the tidbit of his inner life, and I would have gotten right back to Parenthood.  

But Willie is different.  He has yearned for a girlfriend for many years. His new male friend at Soltane has recently started dating a young woman and I know Willie is jealous.  So here you have it. I asked Willie's "house mom" about this and she told me that when she asked Willie if he was interested in dating Celine, his response was "that question stresses me out."

Why am I so afraid? Well for one, I don't want Willie to lose his close and important friendship with Celine, as so often happens when young love ends. And then there is the fear that Willie cannot manage a romantic relationship due to his executive functioning limitations. But mostly I am afraid as this is not in my control. Willie went on this "lil date" without my knowledge and he will continue to make these types of choices without me.  

In the end, Willie and his younger "typical" brother have more in common then I knew.  For as with Teddy, I cannot control who Willie chooses to love. I have had the tough experience of watching Teddy break a girl's heart already.  And now, although I want to protect both Willie and Celine, I have to just let it go...UGH!

Paint By Numbers: Raising A Son With Special Needs

Willie is home for the holidays. Fourteen days and nights. Throughout the past 7 years, this is the ebb and flow of Willie.  Willie yearns for home but when he gets here, it is a challenge. There isn't much to do and leisure time isn't Willies' speciality.  Over the holidays, there is no structure, not anything that must get done, and no routines.  Willie usually gets pretty grumpy and may get frustrated at the limited demands we put on him.  The intensity of his negativity and tantrums vary: you just have to wait and see how bad it actually will get.

I love my Willie.  I too yearn for him to come home.  And there are definite moments when things are lovely, cozy, connected.  But mostly, I put my armor on when Willie comes home just in case. This year I feel that negativity seeping into everything.

So yesterday at Yoga, during the Mediation part at the end, I had an epiphany.  I saw a paint by number painting in my head and knew immediately what it meant.  I am to stick with one emotion/feeling/incident/moment at a time.  As if I am painting with just one color.  I am to concentrate on that color alone.  If another color comes up and asks to be painted, an unhappy incident/feeling/person, I paint it but then go back to the painting and continue.  I leave that rough color behind and move on.  It was my message from myself to myself during yoga.

So far it is working, to an extent.  If nothing else, the image of painting by numbers, is a clear reminder how not to get swept away by any negative experience. And for that lesson, I must thank Willie again, even as I hear him "cusssing" in the next room.

Not Just Another Christmas Play: Raising A Son With Special Needs

Being Willie's parent can be a many splendid thing as I get to join his community every now and then. Last night, I attended the Community Play, presented by Soltane's residents and staff, some with Special Needs, some without. As the audience sat in the cozy but dimly lit Whitsun Hall, you could have been anywhere waiting for any Christmas play to begin.  But as the play slowly revealed, this was not your typical Christmas Play.

I cannot do the 45 minute experience of watching the play, being part of this magical community, justice.  Adam, the Director, and one of Willie's wise teachers, explained a bit about the play beforehand. He suggested to try not to understand it but to SIMPLY be with it. Adam explained that the process of rehearsing and preparing for was the true meaning for the individuals in the play.  

There was love in the room as differently-abled individuals sang, walked, spoke, some with great effort and hardship. There were smiles on the audiences' faces as Adam would talk-whisper someone through their lines, so they could actually say them independently. There were the curious staff children trying hard to be still and quiet, as they too sat rapt watching the play. The audience filled with parents, community members, nearby Camphill community members, just watched, embraced, and supported the brave souls on stage.

For me it wasn't the  actual play itself that left me feeling grateful and full of peace. It was imagining how important and valued each member of the play must have felt to have had this opportunity. It was their expectation that, of course, they would be in the Community Christmas play. It was Adam's understanding and loving smile when he explained it was the process that mattered. It was the pride and joy on some of Willie's friends faces during and after the play. Finally it was knowing that Willie was truly part of this genuine community. 

And as I sat there in that audience, next to Celine, one of Willie's good friends, I too felt included and important.  For in order for this community to really work, to share lives together abled and disabled, total acceptance is a prerequisite. And it is infectious. 

As Willie and I walked back to Emerson House under the sparkling stars on that cold, crisp evening, I was left with a gift knowing that Willie is part of this unique community. One connected to a higher purpose, where all people within the grasp of  it's love are respected, valued, and perfect just the way they are. That is the true meaning of our Holiday Season!

Special Olympics: Not so Special After All: Raising A Son With Special Needs

Willie doesn't like to do any exercise, participate in any sports, or use his body much at all.  So when he perked up and said "Yes, please" to my suggestion that he try skiing though Special Olympics, my heart soared.  The back-story is that he has skied three times with an instructor at our local mountain, using adaptive tethers and hula hoops to get down the mountain.  He loved it.  Willie has always loved the snow and the cold doesn't seem to ever bother him.  As this Fall has been a tough time for Willie with real bouts of depression, I saw golden endorphins flashing through my head as he skied down the mountain.

Not so Fast! There was a true administrative error on the part of Willie's new program.  The person in charge had suddenly left to care for her sick mother on the other side of the country. Special Olympics had been alerted that Willie wanted to ski but their emails went unanswered. Willie needed to be fitted for skis and boots and his medical form was way past due.  I got involved as I was informed that Willie couldn't ski. I realized that deadlines are deadlines and Willie had failed them. But I wasn't about to let those happy hormones away without a fight. After all, I thought, Willie had already been dealt a harsh deck in life, couldn't there be an extension, an allowance, or an exception?

Many emails later, some unanswered to the Director of the local Special Olympics, I decided to use the old fashioned telephone. I am not wiring to complain about the unfriendliness of the Special Olympics Sports Director.  I am not even writing to express my dismay and disappointment that she bashed Willie's program at least 6 times for failing to follow the rules. And although I am not a rule follower, I can accept, with sadness, that Willie cannot be granted a reprieve from these rules.  Willie will not be allowed to ski with Special Olympics this season.

It was the comment this Special Olympics Director made when I explained that Willie needed assistance to get down the ski slope.  Her immediate response was shock, a long dead pause, and then immediately she said he won't be able to ski with us.  The implication was that how dare he sign up for this program and need that level of help, help they don't even offer or recognize. With further prodding, she told me in no uncertain terms, that she had never even heard of tethers to help people with disabilities down the mountain.  (I quickly checked with his former ski instructor who reassured me how common that type of assistance is. ) I even said to this Director "well, why is it called Special Olympics then?"  By then the conversation had turned sour and she didn't respond. But I am still baffled why someone in the field of disabilities would make me feel that there was something wrong with my child for needing assistance to ski down a mountain.  Her words are stuck in my head and combined with my sorrow and anger at their decision preventing Willie from skiing with their organization, I am left with a poisonous taste in my mouth.

I do not want to abandon or bash Special Olympics.  After all, Willie has participated happily and successfully with them in the past. But my gut is to turn away from them for I sense that they are too rigid for my son who needs extra special care.  I wonder if they are so married to the rules that they are unable to attend to his very unique and individual needs.  And although I hope I am wrong, I reject any organization that implies that my Willie is less for needing physical, emotional, or any type of extra assistance.  I am shocked that the organization of Special Olympics has left me feeling these terrible things. Perhaps they are not so Special after all?