Monday, February 25, 2013

"Josh's Story"- A Mother's Brave Account of Her Son's Challenges, Growing Up with Special Needs

Josh on Vacation
A few months ago I wrote a post called Do you feel that  life's unfair? I received a beautiful email from Nancy telling me about the 12 years of challenges and joy her family has had raising Josh, a child with special needs. 

February is Jewish Disabilities Awareness month. This year in our synagogue (Shul) Nancy spoke to the community about what it is like for their family and what we as individuals and as a community as a whole can do to be more inclusive. 

I will be publishing it in two parts. This post tells the compelling story of Josh's life so far. In the next post I'll share Nancy's ten practical suggestions for actions we can all take to help children with special needs feel more included in our communities.

Here is her powerful story.

 "As a corporate lawyer, I am used to speaking to Boards of Directors, negotiating deals or teaching lawyers, but there I am discussing mergers and acquisitions.  So when I was asked to speak, I initially declined as I have never spoken publicly about matters personal to me and my family.  However, I decided to speak because I think this is important for children with special needs including my son.

            My husband Ben and I have four children, Rachel, Rebecca, Sarah and Josh.  Josh has many difficulties – medical issues, emotional issues and learning disabilities.  He was born with an immune deficiency that makes him susceptible to certain bacteria.  Josh had his first surgery for ear tubes when he was six months old.  

By the time he was seven, he had had over fifteen surgeries under anesthesia.  At one point, he developed a benign tumor that was removed along with part of his ear anatomy.  A few months later the tumor had fully grown back.  This time the surgeon removed it, as well as a more substantial portion of his ear anatomy including two of his three ear bones to make sure it would not grow back, requiring Josh from then on to wear a hearing aid in his right ear.

  I remember when he got the hearing aid at age six, I was so sad thinking my son might need to wear this his whole life....  

..........At this point I would give anything to have that be his only difficulty. 

            On the emotional side, Josh was diagnosed early in life with a mood disorder which evidenced itself with aggression and impulsivity.  After a lot of trial and error working with different behaviorists and psychiatrists as well as different medications, we have been successful in substantially controlling his behavioral issues for the last several years.  Josh also has severe learning disabilities.  All of his academic skills are several years below grade level.  Josh is now 12 and has been enrolled in seven schools.

            So what do you think is the hardest part about being Josh Rubin?  

After hearing all this you might be thinking, "Everything seems hard about being Josh Rubin!"  But the answer is none of the above.  Echoing the speaker from last year's Jewish Disability Awareness Shabbat:

The hardest part of Josh's life is his social life or lack thereof.  Mainstream children pick up very quickly that children with special needs are different, and generally they have little desire to be with them.  The task for us as parents of mainstream children – of which I am one as well – is to teach our children the importance of including children with differences.  It took the birth of Josh for me to realize that I had not communicated this message well enough to my daughters, who missed many opportunities to reach out to peers with special needs.  

I remember inviting for Shabbat lunch a family with a child with autism who is about the same age as one of my daughters.  A few days later I ran into the father who said, "You have no idea how meaningful it was to my daughter to go to your house for lunch."  "Oh, it was nothing, my pleasure," I replied casually.  "No really," he said.  "It made her feel so good, and my wife and I thank you for that."  I walked away thinking that that was quite an effusive thank you just for a Shabbat lunch.  I really did not get it.  Now I get it.  And I regret not reaching out more than I did.

Most children's weekends are packed with birthday parties, play dates and sleepovers.  Children with disabilities have very few of these.  I can count on one hand the number of birthday parties, play dates and sleepovers combined that Josh has been invited to in the last several years.  

The world is not an easy place for kids with special needs.  And although things are moving in the right direction here, our community is no exception.  I was once approached by a parent in this community with a younger child with special needs.  He said to me, "When I watch how the boys here treat your son, I worry about what it will be like in shul for my child in a few years."

Ok, so you may be thinking, "What exactly is she talking about?"  

Josh loves sports, but often he does not fully understand all the rules, and with his coordination difficulties, he will never be the star player.  On many occasions as Josh and I arrive at shul, there is a football or soccer game going on outside.  Josh approaches the kids and asks to join. 

 "Sorry, the teams are all set.  Sorry, the game has already started," is the common response. 

 On many occasions, I watch Josh run to approach a group of kids only to have them scatter with one yelling "Run, Josh is coming."

Kids with special needs often don't get social cues.  So if that is not painful enough for a mom to watch, I then realize that Josh does not get that they are running from him.  He thinks they are playing tag and starts to run after them.  Then there are the social meals.  One in particular I recall so clearly.  We were invited for lunch by a family with a son around Josh's age.  When we got to the table, the boy changed his seat several times to avoid sitting next to Josh, only for Josh to change his seat to be closer to the boy.  

Later in the meal, Josh asked the boy to go outside to play.  The boy said no, so Josh went out and kicked the ball around by himself.  Then the boy whispered something in his mother's ear, ran upstairs, changed into casual clothes and ran outside.  Josh thought he was coming out to play with him, but the boy kept running.   "Where are you going?"  Josh yelled. "To a friend's house."  "Can I come?"  asked Josh.  "No" said the boy.  Josh walked back inside and quietly took his seat at the table.  Ben and I looked at each other -- I excused myself from the table, went to their bathroom and cried.  

But rather than wallow in our pain, we as parents of children with special needs, stand up, brush ourselves off, and think about what we can do to make our child's life as happy as it can be.  

On one occasion, when I witnessed a boy doing the "Run, Josh is coming" thing,  I hesitantly approached his mother and told her what happened.  She looked at me and said, "I am appalled!"  I was worried as to where this conversation was headed.  "I am appalled," she repeated, "at my son's behavior.  I am embarrassed that he acted that way, and I apologize.  I truly thank you for bringing this to my attention.  I can guarantee you that will never happen again."  I was so touched by her response.  I can only imagine the discussion that took place in their home that day, but she was right.  Not only did it never happen again, but to this day her son is extremely kind and inclusive of Josh, always saying hi when he sees him.

Things have definitely improved for Josh here.  In part because his peers have matured and now "get it."  They are starting to understand that they should include him, even if having him on their team is not going to help them win.  One friend of mine who has a son a few years younger than Josh told me that he talked to his son about Josh, and explained that he has issues and should be included, not avoided.  

There are also some wonderful people in this community who are so good to Josh.  When lunches are being prepared by caterers for the synagogue, Josh is often allowed to help.  I remember one occasion when I was looking for Josh and went into the kitchen.  Signature Caterers was busily preparing for a kiddush lunch for the shul.  I saw about six men on their staff lined up in front of a table plating salads – and there in the line I saw Josh.  He, like the others, had on plastic gloves and was part of the team plating salads.  I was so touched that I hugged Larry (the caterer) and thanked him so much for letting Josh help.  

So what can we do to be sure all of our kids feel part of our community?"

Perhaps, this is the most important question of all and Nancy's excellent suggestions will be the subject of my next blog post.

Thanks for reading. Please repost and tell me your story below. 

Looking forward to hearing from you.


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  1. Heartbreaking and heartwarming - you seem to have a great community.

    1. You sum it up perfectly Rachel- When Nancy delivered this in shul, everyone was so moved by her account and moved to act to make the community a kinder more welcoming, more inclusive place for every adult and child. Thanks for commenting. Gillyxx

  2. A very touching story . A perfect lesson that I needed to read today. Because a situation appears so enormous don't let that stop you offering what seems like a very small amount of help. Rachel and Josh's lives have changed hugely because of very tiny acts of kindness that cost nothing.

    1. Thanks Jo.
      You make such an important point. Saying hello, teaching our children how to respond appropriately and inclusively and reaching out to families costs thought and kindness, nothing else. Being mindful about these things makes all the difference and helps families and their children feel less isolated and brings a huge amount of happiness through small changes in our behaviour.
      We really have no excuse!

  3. It really is so important to get our kids to see children who are different in some way as part of their community and not apart from it. Three of mine went to an integrated elementary school with around 4-5 kids with special needs in each class. These kids were an integral part of the class joining in with whatever they were capable of (with help from the other kids where needed). I remember the pleasure it gave my daughter to help one girl write her bat mitzva drasha (far more pleasure than writing her own!) At various end-of-year events, all the children had roles to play. When you see a group of twelve year old girls cheering on their class mate with Down's while she sings enthusiastically, or 10 year-old boys cheering on their classmate with autism as he played on the darbuka, you know that something is being done right.

    1. Gillian -those moments are priceless and it sounds as though your children's elementary school had a wonderful philosophy and the resources to support it. I think the point you make about our children understanding that ALL children are part of our community is very important., When they see them on the street, in the playground at shul or the grocery store it should be as natural for them to say hi as they would to anyone else they know. We have a lot of work to do to make this a universal message....
      Thanks very much for commenting.

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  5. hi there Gilly, this is a powerful story and I feel every word in it.. because I am myself a teacher for children with special needs. I dealt with children like him.. but you know, all we can do is believe and trust that, everyth is gonna be fine if we only not give up and work hard together to combat it. Parents, therapists, teachers must stand strong to provide him with all that he needs in order to live a much more functional and meaningful live everyday. Thanks sooo much Gilly for sharing this. and Kudos to Josh' family who remain strong and supportive and positive all through.

    1. Thanks Maria Ana - I will pass on your message and feedback to Nancy. It is a community effort to make sure all our kids are raised in positive, nurturing, supportive communities.

  6. As the parent of a special needs child, this post resonates strongly. Thank you to Nancy and Gilly for sharing this. My son recently spoke publicly about what it is like to BE a young adult with an invisible disability (Asperger's). A blogger for the Huffington Post wrote it up :

    1. Leesa , you know all too well what is like to raise a child with an invisible disability. Jeremy's talk was so powerful and I am very glad The Huffington Post wrote about it. In it Jeremy who has a masters degree in library science cannot get a job because the interview process makes it very challenging to see past Jeremy's social skills to the skills that would make him a great fit for the jobs for which he has applied. Please take a moment to read about him and ask yourself the question

      Why wouldn't you want to employ Mr Band?