Listening to my Heart

I have been thinking a lot about Joe’s social life.  At his age (25) he should have more friends.  Friends that call him up and say:  ”What ya doing?  You want to come over and hang out?”  Or friends who call and say: “Hey, a bunch of us are going to Oktoberfest. You want to come?”  Trouble is, he doesn’t get invitations like this.  Joe does have a couple of really good friends who he spends time with now and then.  But he needs more.  Maybe new friends just don’t think about asking him.  Maybe they think it would be too much trouble to come get him / bring him home – or ask me to drop him off and pick him up.  Maybe they think, for some reason, it is ‘not appropriate’ and Joe doesn’t need other people in his life – “Joe’s family takes good care of him, he doesn’t need me.”  Or maybe it is awkward to arrange things with me, Joe’s Mom – since Joe needs help scheduling things.  Perhaps they just don’t know how much Joe would really enjoy spending time with regular friends doing ordinary things.  So, taking a page from Tim’s book, I decided that it is us (Joe and I) who need to do the inviting.  And little by little, I have begun helping Joe make invitations – mostly thru Facebook.  We have been pretty successful.  It is a little disappointing when someone is busy and can’t accept the invitation.  But that is the way of life and Joe seems OK with that.  Sometimes, Joe’s invitation goes ignored or is refused with no explanation at all – that is pretty tough.  I make excuses for the person and tell Joe, ‘Maybe next time”.  But I don’t have to tell him he is being disregarded – he knows.  It hurts.  It makes me want to pull back and stop inviting.  I know, pretty thin skinned.  But that’s not all . . .

Joe has participated in StarfireU for three years now; he is currently in his fourth and final year of this awesome journey.  Key to the efforts at Starfire is the development of a solid network of friends for each of Starfire’s members.  Understandably, Starfire has been working really hard to bring families into the social network building work they do.  So they ask us families to help identify the people who already know and care about our sons/daughters.  They have asked me to name these people in Joe’s life and then to reach out to those people and invite them to come into and be a part of Joe’s social network.  Starfire asked me to invite these important people to come to Joe’s PATH (a futures planning process)and to his CAPSTONE Collaboration (a network building project) meeting.  They want me to ask these people to become more involved in Joe’s life.  It is really important that I contact these people and ASK them to come help Joe.  However, this isn’t easy for me – in fact, it is extremely difficult.  They are good people, really they are.  They truly care about Joe, I know this.  But it is SO VERY HARD to call or even email and ASK them for help.  So I stall, I procrastinate, I make excuses.

I am totally excited about the work that Starfire is doing.  And I am absolutely thrilled about the wonderful social network of true, lasting friends that is possible for Joe thru this work.  This is life changing stuff!  I am totally convinced that the more people Joe has in his life, the richer, more vibrant, and safe his life will be – especially when I am no longer here to support him.

So why can’t I do my part?  Why is it that I am so afraid to ASK?!!

I have really struggled with that question:  I am a shy person.  That’s true.  I was raised to be self-sufficient, and meeting my child’s needs is my job.  To ask someone else to carry my burden isn’t right.  That’s true too.  To ask for help is a sign of weakness or incompetence. It’s like saying, “I can’t handle ‘things’ on my own.”  Well, maybe there’s a little of that. And then, I come to a thought that hits a nerve:   I am afraid of being rejected.  There is a spark of pain and lingering sadness that comes with this thought.  This is real and powerful and not quite rational.  Why does this fear seem so out of balance?  And, as I continue to search in my mind . . . when I am brutally honest with myself . . . I know that I hear it . . . from some place in the dark, dark, depths of my consciousness, comes that debilitating whisper: “Your son is not worthy.  Why would anyone want to be friends with him?  No one has the time or energy to spend on him! Why would they want to?  How can you possibly think that anyone could really develop a true relationship with someone who has so few skills in holding up his end of developing and nurturing a friendship?”  My heart sinks as I realize that THIS is what is holding me back.

Let’s be clear here:  I don’t really believe any of that!  But I cannot deny that I hear that whisper. Where does that demoralizing voice of doubt come from?!!  How does my fear of rejection rise to the level that it becomes paralyzing?!

In reflecting on this and looking back over my experiences since Joe was born, I remember several times when I have sought help on his behalf – and met with rejection. I have heard words (spoken and unspoken) from others that have fed and kept that cruel whisper alive.

I would like to share these stories with you; not to gain sympathy, nor to prove how tough our life has been. Please believe me when I tell you that Joe has had a wonderful life!  And I would measure my life no tougher than the average – actually easier than many.  What I do want to gain is your understanding of the path we have traveled and how the experiences I have had along this path have influenced me.  The words and actions of others do impact our lives – there is no getting around that.  My life experiences have led me to be who I am today, and explain (at least to me) my challenges in facing ‘The ASK’.  Here are my stories:

It goes way back to when Joe was just a baby . . .  When Joe was born, we felt so fortunate to find a young mother who was interested in babysitting Joe during the day.  At the time, I held a full time, career-oriented job at GE and was ecstatic to have such a perfect daycare solution.  Joe’s babysitter started caring for him when he was two months old.  We did not know that Joe had a disability until he was formally diagnosed at the age of 11 months.  For some time, Joe’s delays were not readily apparent to the average person.  But by the time Joe had reached 18 months, his delays were very obvious.  He was unable to walk or crawl or stand.  He could sit, but he sat with a lean and was not stable.  He was not talking at all.  Joe’s sitter was accustomed to taking Joe along with her and her own two children to the store or to the pool or the park – wherever they went during the day. Apparently as Joe grew older and his disability became noticeable, people – her friends in particular – had started asking questions about Joe and his delays. The sitter became uncomfortable having Joe with her.  So, one afternoon, she told me that she could no longer babysit Joe.  I was shocked and totally distraught. I began my search for another day care provider.  We asked everyone we knew and could not find another private sitter.  So I turned to regular daycare providers.  One by one I approached each daycare in our area.  One by one they turned me down.  Joe was ‘too fragile’.  He would get ‘stepped on’.  “We don’t have a place to put him where he will be safe.”  “We can’t possibly provide the special care that he needs.”  Many times the excuses didn’t even make sense – the answer was basically, ‘No’ because he had a disability.  With every rejection, my heartache intensified.  No one wanted my baby – my beautiful, sweet, happy baby.  He didn’t fit.  He didn’t belong. He wasn’t normal. He wasn’t good enough. My heart was breaking!

My next story takes place when Joe was about eleven. Joe had participated in Cub Scouts from the very first day when he came home from school dancing around and waving a flyer about signing up. He joined right away and attended every meeting / earned every badge / enjoyed every minute of being part of the troop. I joined too as an assistant leader and Joe’s Dad ran some of the outings.  It was a great experience and Joe was quite proud of his earned badges and of belonging to the troop.  He was especially proud on the night when the boys in his den “Crossed the Bridge” from Cub Scouts to Boy Scouts.  At that point the boys moved up to another troop and location under new leadership and into the ranks of ‘REAL’ Boy Scouts.  Joe was excited and ready.  We went with his Cub Scout troop to the informational/orientation meeting with the new Boy Scout leadership – all men – all in uniform – the REAL DEAL!  The Cub Scouts also attended several get acquainted / ‘these are some of the things we do as boy scouts’ meetings.  At one of these meetings, the Boy Scout Head Master pulled me aside and told me that Joe couldn’t possibly participate in Boy Scouts.  I was shocked!  I explained that he had always participated in Cub Scouts and that I would happily provide him with the support he needed.  The Master was persistent and said that I, as a woman, would not be permitted to attend. I insisted that there must be a way that they could find support for him.  At the next meeting, I was surprised to learn that the Boy Scout Master had arranged for a representative from another Boy Scout Troop to evaluate Joe for inclusion to his troop.  This troop was exclusively for scouts who had disabilities!  So, while Joe’s fellow Cub Scouts were learning with and getting to know the Boy Scouts from their new troop, Joe and I were pulled into a private meeting with the Scout leader of the ‘Disability Troop’.  The ‘Disability Troop’ leader talked with Joe and I and then reported that Joe definitely would NOT fit in with his group of scouts.  His troop consisted of men who were anywhere from 20 to 40 years of age – Joe was just 11!  He said that Joe belonged in the regular Boy Scout troop.  Left with no other choice, the Head Scout Master told me that if I could find an adult male who would assist Joe, then Joe could join his Boy Scout Troop.  Unfortunately, Joe’s Dad was unable to help out since he had a full time job and was also co-running a small business. There was only one person we knew that I could possibly ask to do this for us – the man who had lead Joe’s Cub Scout group for the past year.  He is a kind, gentle, caring man but it was hard to ask.  Sadly, he said no.  He said he just didn’t have the time.  Joe’s scouting career ended.  The injustice was infuriating and the heartbreak intense.

Only a year later, I wanted to help Joe build friendships with his ‘typical’ classmates at school.  There weren’t many children his age on our street and I expected that there were classmates at school who were already friends with Joe during the day who we could encourage to become closer friends with him.  I could talk with their moms and invite the friends over and support Joe in developing these friendships. I had read about a ‘Circle of Friends’ concept where a group of friends was built around a person with a disability who needed support in developing friendships. But I needed help in learning how to go about this and in knowing which friends would be good candidates.  I was also hoping that some of this interaction / friendship building could take place at school. I remember going to one of Joe’s IEP meetings full of enthusiasm and hope that I could pitch this idea to Joe’s IEP team and they would help me make it happen.  Surely they would understand the importance of friends!  I began by explaining to them that Joe didn’t have real honest-to-goodness friends.  No one asked him home for sleep overs.  He wasn’t invited to birthday parties. He didn’t get invited to go play at anyone’s house. He needed real friends!   As I tried to build my case in earnest, my heart ached at the truth of my words and I was unable to keep my eyes from welling up and overflowing.  I told them about the Circle of Friends concept and I asked them for their help.  I was met with a very long period of silence  as the people in the room looked from one to the other, each not knowing just what to say – how to go about saying no.  I don’t remember who spoke or what exactly was said.  I do know the answer was a definitive ‘NO’.  The explanation was something along the lines of “That’s not our job.”  The messages I heard were:  ‘That’s your job.’  ‘Friendships aren’t important.’ ‘That would be too much work.  And we don’t believe that what you are asking for is even possible!’ I felt alone and hopeless.

One more, quick story:  Joe was in high school.  He has always loved theater and has been involved in acting, on and off, since third grade.  He took the theater classes at high school with support from the Special Ed team.  But, in order to perform in the high school’s theatrical productions, students had to join the theater club and stay after school to rehearse.  At that time I had a full time job and was unable to be at the high school to support Joe during the after-school time frame.  I asked his Special Ed teacher if anyone could be found to support Joe after school for this.  I was told that ‘No, it would probably be very difficult to find anyone who would want to stay after school to support Joe.’  No sense even asking around.  End of story.  I felt defeated.

As I relive these and other stories of Joe’s life, the memories of those struggles are so clear and the pain I felt then resurges as though it had never left.  It is now quite easy for me to see why I am so ‘gun shy’ about asking others for help on Joe’s behalf.  Having asked for help in the past and experiencing the pain of having my child rejected, I am now literally afraid of experiencing that pain of rejection again.  I realize too, that the one thing that feeds that fear WAY beyond reason is my clear EXPECTATION of being rejected.  For, even more than the past rejections themselves, it has been the messages that have come with these rejections that have had such aprofound, lingering impact.  These messages were crystal clear:  Joe isn’t good enough.  He isn’t normal. He isn’t capable. He isn’t important.  He isn’t worth the trouble.  He doesn’t belong with us.  We don’t want him.  No one would want to be his friend.  No one has time for Joe.  He belongs with others ‘like him’.

If I listen to these cruel messages and let them guide my choices, I could easily be led towards places and programs that have been built exclusively for people with disabilities. After all, what I have heard is that Joe belongs with others who have disabilities, not in regular places and regular programs with everyone else. Asking for help from agencies who build these ‘special’ places and programs is easy – they welcome Joe.  There would be no rejections there!  It would be so much easier.  I wouldn’t have to ask, all I’d have to do is sign him up.  I wouldn’t have to fight to get him in.  Joe or I wouldn’t have to prove that he is capable of anything – they don’t have expectations.  I could avoid ‘the hard stuff’ of building Joe’s network and helping him find his place in the ‘real world’.

Thing is:  I know that these messages are not true.  I don’t believe in my heart of hearts that Joe belongs only in groups of people with disabilities.  I don’t believe that anyone does.  Every person deserves the same opportunities and experiences and daily life as anyone else.  Joe belongs with ordinary people in his community doing the things he loves with the people he cares about.  And there are people out there who do want to spend time with him and who will love him simply because he is Joe.

Candice talks in another post about the 3 Monsters that hold us back from worthy goals.  As I reflect on past experiences, I realize that the messages I have heard throughout Joe’s life continue to feed my 3 Monsters and keep them alive and well.  But, as Candice explains in her post, now that I recognize what is holding me back, I can set those monsters aside so that I can move forward.

I know in my heart that there are people out there who WANT to be in Joe’s life.  And I have Starfire to help me find those people. As I witness more and more people coming into Joe’s network, I am learning that bringing people into Joe’s life really isn’t so much an ‘ASK for help’ as it is an invitation. It is an invitation to a wonderfully rewarding relationship.  So I WILL do my part.  I will INVITE. Because it is only by my inviting people into Joe’s life that I can help Joe build the rich network of friends that he WILL have in his life.  And I firmly believe that the more people Joe has in his life, the richer, more vibrant, and safe his life will be.  Some things you just know ~ if only because your heart tells you so.