Monday, March 4, 2013

10 Essential Thoughts to Help Us Understand How to Help Children with Special Needs: Josh's Story - Part 2

The Rubin family
Last week I posted part one of a talk by Nancy mother of Josh, a child with medical and emotional issues, and learning disabilities. She spoke to our synagogue community  about what it is like to be Josh and how his lack of a social life is one of the most challenging pieces of his world to navigate. She explained, 
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.  

Nancy  also talked about how parents have to be resilient when these painful situations arise. 
 ...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.  

At the end of last week's  post Nancy posed a crucial question.

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

In this week's post, Nancy suggests 10 ways we and our children can be involved in making the world for children with special needs a little bit easier and a little bit happier.

1. We can take a moment and say hi and ask how they are doing.  It's OK if they don't always answer you back; it is still meaningful to them. 

2. If you see children excluding others or being cruel, be proactive and say something.  As many parents have told me, being excluded and left out is not something experienced only by kids with special needs.  Lots of kids feel that here, and that is something we all should work on with our children.  I often say to the kids, "Hey, this is a  community and we all need to be kind to each other."  In doing so, we are setting an example for our children to reach out to them. 

3. We can also talk to our own children to help educate and sensitize them to the situation.  Explain that some children are a little different, they don't get all the jokes and they won't hit the home runs, but it is kind to include them.  Many kids who have differences are in schools in which they are surrounded by other kids with varying needs.  It is really good for them to socialize with mainstream kids, so they can learn to model more appropriate behavior.

Communication is very important in both directions. 

4.  Parents of other children should not feel shy to ask about the situation or how to make things work.  For example, our son was once invited to a peer's paintball party, and the mother asked if we would send a teenager along.  We were happy to do so and thrilled that Josh was included.  It was much better that she invited him and asked for help rather than not invite him, deciding it might be too difficult for him to handle on his own.  

5. Parents of kids with special needs should be open and realistic about their children.  If an invitation is made, they should be proactive and make a plan that sets their child up for success.  An hour or two, for example, may be better than a four hour play date.

6. If your kids see kids with special needs in shul or in the neighborhood, a hello is very meaningful, and if you can include them in your games that is a really great thing to do.  
I would be remiss if I did not mention another dynamic of children with special needs, namely, their families.

7. Having a child with multiple needs puts enormous stress on the child's parents. 

There are so many tough decisions to be made and so many unknowns about what his future will be like.  For years I could not even say the words "residential facility" or "group home" without getting teary.  Thank G-d we have been able to handle Josh's issues so far without going that route, but who knows what the future will bring?  Will Josh be able to support himself?  Will he be able to live on his own?  Could things improve enough that he could even get married and have a family?  These are all questions that loom over Ben and me all the time.  And if the answers to those questions are no, will we be able to put enough money aside to support him in the future so he can have a lifestyle similar to the ones his sisters are likely to have?  As Josh's troubles unfolded over the years, I was always afraid that something might arise that Ben and I did not agree on the best way to handle.  Luckily, my fears in that regard were unfounded, as he and I have always been on the same page with Josh.  One example is Josh's schooling.  Ben learns Torah every night, and I know when Josh was born Ben dreamed of spending time learning with his son.  However, early on it became clear that Josh would not be able to handle a dual education (English and Hebrew).  Yet I feared that it would be hard for Ben, as a rabbi, to give up that dream.  But Ben wanted the best for Josh and accepted the need for a school change without hesitation.  Ben is an unbelievably wonderful father to Josh.  I thank G-d every day for giving me such an amazing husband as we support each other and work as a team in facing this lifelong challenge.  Ben has always said that our responsibility as parents of Josh is to do everything we can do to make his life as normal as possible, and together we live by that credo.

8. Then there are the siblings When you are one of four children, you are entitled to 25% of your parents' focus, time and attention.  But a sibling of a child with disabilities does not get his or her fair share as some of their 25% must go to their sibling. 

It is not fair, and not always easy to accept but that, unfortunately, is the way it is.  It's hard growing up with a brother or sister with special needs.  When I was a teen having a party, I did not want my little sister hanging around.   I would yell to my parent's  "Mom, get her upstairs, this is my party!"  And that is a totally normal emotion for a teenager to have and a totally normal thing for a teenager to say.  But our girls on their own most often resist doing that and not because Ben or I ask them to include Josh. They know Josh rarely goes to parties and he is so excited to help make the guacamole and set up the chips and dips, and so excited that teenagers are coming over.  So they let him stay, even if that means he might be talking non-stop to their friends.  While it is not easy for siblings of kids with unique needs, they do learn to be much more sensitive to people with differences.  

Our daughter Sarah's current career goal is to be a psychologist or psychiatrist for families with kids with special needs.   Sarah spends a lot of her time outside of school tutoring and taking care of children with special needs in our community and in local shelters.  A dear friend of mine once recounted to me a conversation she had with our daughter Becca.  Becca told her that she needed to make a lot of money when she got older.  My friend was puzzled as she knows we teach our kids to choose careers they enjoy and will want to spend their life doing, and not base that choice on money.  She said she asked her why.  To which Becca responded, "After my parents pass away, I will need to support Josh."  I was so moved by this.  I told Becca that no, that was not her responsibility, Abba and I would take care of that and she should pick a career she likes regardless of the money.  Our daughter Rachel recently told me that when she gets married, she plans to have Josh move in with her and her husband.  Again, I was so moved but said "No, you will have your life which will be very busy when you start a family."  She responded, "Mom, an adult should not be living with his parents."  While I never would have chosen to have this challenge in life, one silver lining is the positive impact it has had on our girls.  Siblings are so incredibly important to a child with a disability who may have few friends.   Unquestionably, the best thing that ever happened to Josh is having Rachel, Becca and Sarah as his sisters.  They mean the world to him. 

9. The challenge reaches beyond the nuclear family.  Our extended families provide enormous support to us.  I speak with my mother almost every day and one topic we discuss on every call is Josh – how his day was, did things go smoothly for him.  Ben's dad always asks about Josh and consults with experts he knows to help guide us.  There were so many decisions to be made over the years as to how to handle his multitude of troubles.  Ben and I are truly indebted to our families for being there for Josh and for us.  My family knew that giving this talk would be tough for me and so my mother and brother are here from New Jersey and my sister is here with her son from Boston.  

If there is one thought I would like you to take away from my talk, it is the following:-  

10. It is very hard to be a parent of a child with special needs. 
 It is very hard to be a sibling of a child with special needs.  
 And it is very hard to be a friend of a child with special needs.   But as hard as each of those things are, they pale in comparison to 
how hard it is to BE A CHILD with special needs. 

So it is incumbent on all of us who have been blessed by G-d to be born without the challenges these children face, to step up to the plate and do what we can to make their lives just a little bit easier and a little bit happier.

 Thank you all for reaching out to the kids with differences in our community and helping to teach your children to do so as well. "

During her talk Nancy highlighted some organizations in her local synagogue community who have been particularly helpful in supporting Josh and his family. These include Chabad's Friendship Circle that pairs teenage volunteers with children and teens with special needs. Together  they meet weekly for activities, 

Please repost Nancy's poignant insights and suggestions in order to help make your corner of the world a more inclusive place for everyone.

Please leave a message for Nancy or for me below. Or tell me your story and suggestions for helping others in our communities.

Thanks for reading!

Talk to you soon


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  1. Wow, a very inspiring talk. I teared up when I read about how the sisters think about including Josh in their futures. You must be truly wonderful parents to have nurtured such caring and responsible teenagers.

    1. Thanks very much for your message Rachel. I will pass it along to Nancy.

    2. Rachel - Thank you for your kind words. I don't think we are different from any other parents. I feel you get dealt the hand you are dealt in life. I sometimes look at a family with a major problem and think I could never handle that. But I think we all have to handle things we never dreamed we would be faced with -- as Gilly knows all too well.

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  3. Dear Gilly and Nancy,
    Thank you so much for this. As a parent of a child with special needs, you have given me something I can pass on to people in my shul, in my son's school, as well as to family and friends. You have managed to put my thoughts into writing, and I so appreciate these posts.
    Many thanks,

    1. I am copying/ pasting Nancy's replies because her browser will not allow her to leave comments( aaagh!).-Gilly

      Thank you for your kind words. I hope that the message in my talk can help improve things for your child. It is a very tough subject and a rough situation for these kids. I tried to be constructive without being critical and angry – believe me I have those feelings as well, but I thought it would be counterproductive to express them. Good luck with what as we all know is a very long process.

    2. Lauren -I'm so glad these have been helpful. I think sometimes coming up with the language to explain a difficult situation that is clear and non-combative, is challenging. Nancy achieves both in her talk. So glad it is helpful. Gilly

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