Inclusion Connections, LLC

Finding innovative ways to include people with disabilities in communities

The Answer is the Question

The woman does not want to call attention to herself.  It’s Friday night. Shabbat services.  Another week of screaming tantrums are over.  She is looking for a break.

As she silently prays, one of her sons rocks back and forth.  Quiet pauses between verses become filled with the thumps of a small back rhythmically hitting a chair.  A stranger angrily mouths “Quiet!” to the young mother. The woman moves to the back of the sanctuary, taking her two young children with her, and stands and prays.  The same son twirls around.  Another congregant asks her to leave.

But there are things that the congregation doesn’t know. The young single mom has two children with autism.  She has come here for community. For support. For five minutes of conversation during an oneg.

There are other things they don’t know. They don’t know her or her children. They don’t know that she spent most of her life living in Israel. They don’t know all the gifts autism has taught her, such as patience and fortitude. They don’t know how bright and inquisitive her sons are.

The weary mom doesn’t tell them these things. She just leaves. Similar to when strangers in stores stare when her children melt down, she feels rejected, this time in a place she thought she’d find community. Still, she is an “autism mom,” someone who has fought for her kids since the day they were diagnosed.  She does not give up easily.

The following week she tries a second synagogue, but the response is similar.

The third week the mother visits a church, where the congregants know she is Jewish, but they consistently give her the support she craves. When either of her sons fidgets during services, church members offer to help. They invite her to dinners and even give the financially struggling mom grocery gift cards.

The story is true. Unfortunately it’s not an isolated case. As a lay leader in Jewish inclusion, I talk a lot with parents and have attended leadership institutes and Jewish disability meetings where the lack of inclusion is often discussed. Nationwide, those with disabilities and their families often feel left out of their Jewish communities.

Most congregations embrace the words “tikkun o’lam.”  They feed the homeless. They fill the freezers of congregants who have lost loved ones. They participate in blood drives. Yet they often have no contact with families who spend their days trying to find the best therapies for their children and their nights worrying what will happen to their adult children after they can no longer care for them. Some of these parents care for adults who cannot toilet independently or who have feeding tubes and oxygen.  Many have spent their retirement accounts on therapies. Often their spirits are weary from the physical and emotional needs of extra caretaking and from fending off insensitive comments from a world that blames the actions of all children on the parents.

These parents would love a tender word, a warm meal brought to their home, and ways for themselves and their loved ones to participate in Jewish life. Inclusion is not about expensive equipment or programs.  It is about awareness and acceptance. It’s not about tolerance; it’s about embracing these families.

“What would have been helpful is if the synagogue could have treated us more in the way the church did,” the mother said. “The church embraced us fully.  They truly acted out of love, and love alone. It was a tremendously beautiful experience.”

There is no way the synagogue congregants could have known the woman’s story without her telling it.  But no one knows a person’s story the first time they meet. Inclusion starts with asking,  “How can I help?”

 

My blog also appeared on the Ruderman Foundation Web site today. 

http://www.rudermanfoundation.org/…/disabil…/simple-question

Connecting with Our World

Eliot May 1996

Our son, Eliot, would draw and recite letters and numbers before he learned to call us Mom and Dad.

 

We knew early on that our son was severely impacted by autism.  Diagnosed at 17 months with PDD (Pervasive Developmental Disorder), my husband and I embarked on a quest to get him the therapies he needed to be a part of this world.  It wasn’t easy.   At that time there were no support groups, no Internet, no real awareness around  autism.  Even the developmental pediatrician who diagnosed him told us to “read a book on ‘learning disabilities’ ” and never once mentioned the word, “autism,”   as if he was afraid that the word would be too much  for us to handle.

We needed to know everything in order to move forward.  Knowledge is power. So we found our way through reading books,  finding the right experts and trusting our own intuition.

While most children naturally are totally enthralled with their mother’s gaze,  my  journey began  with a quest to get our son  to recognize me as “mom. ”  By age 3,  he still wasn’t there;  he was trapped in a world where he would trace imaginary letters in the air with his index finger and call out their names and laugh.  He would scream in his car seat when we traveled to Boulder and didn’t turn onto Foothills Parkway. (We think it was because he wanted to see the signs with exit numbers.) There were times that he would scream for no apparent reason,  and I would feel isolated from my play group, our schools, our faith community and  from  my life.

Our son is now 22, and he recently graduated from  the  University of Colorado Boulder. He works 30 hours per week as a software engineer.   He lives in an apartment with roommates who help him with morning routines and cooking. He has friends, travels independently by bus, and manages his own finances.  He visits and calls.  He is part of this world.  We are part of his world too.

It wasn’t an easy journey. There were many pieces to get him here.  And there is more for him to learn as he works to get his driver’s license,  increases his cooking repertoire  and discovers more diverse ways to spend his time.

The Inclusion Connection is for those of you on this journey.  There are many children and adults with disabilities who still live in a separate world, the world for people with disabilities. They don’t meaningfully socialize with “typical” peers. They don’t attend college. They don’t work. They aren’t a part of a faith community.   They often either live with their parents or live somewhere where they are mostly isolated. Often the parents feel isolated too.

The Inclusion Connection is also for those who are not on this journey, those  parents, employers, school officials and others, who recognize that the world will never be whole until all children and adults are included in all parts of  our society.