Just being a Mom (Excerpted from a presentation re residential housing.) By Karla Berbrayer

Dedicated to My Family 

My son, Micah Kraut, is now 30 years old.  Micah is a twin.  He has a diagnosis of autism, profound visual impairment, mild cerebral palsy, and a seizure disorder.

Following the birth of our twins, my husband and I had another two children, with the result being that we had four children in five years. Throughout the years, as our children grew and reached various milestones, my husband and I would talk about our goals for Micah.  From the outset, Micah’s siblings were his best friends.  I worried that there might be jealousy amongst the children because Micah required so much attention.  I wondered if I was short changing my other children as my time and energy was limited and I was so exhausted after visits to Micah’s occupational therapist, physiotherapist, speech therapist, music therapist, doctor, child care program…

Many years later, when my children moved out to go to university, I thought they would all be happy to no longer have so many responsibilities at home with Micah. To my surprise, one of my sons immediately became part of the Best Buddies program at McGill and developed a friendship with a mentally handicapped older man whom he would meet for supper on a regular basis.  Micah’s twin brother chose to work as an aide at summer day camps, eventually pursuing medicine. Micah’s sister volunteered in a number of special needs environments, including Special Olympics. Currently, she is completing a master’s program in occupational therapy.

As the children grew, we passed various milestones.  When Micah was two and a half years old, I was firmly told that it would not be possible to place him in the local Jewish pre-school.  Children with special needs in the Jewish school system were unheard of at that time. We discovered a program in the local community centre, and were told that a one-to-one aide would be provided for Micah.  As Micah aged out of this program, the next hurdle began – elementary school.  I was told that our local public school had a progressive principal.  When I walked into her office and saw the books lining her shelves – adaptive learning for the special-needs child, I could hardly speak.  I told her, as a mother of a special -needs child, one gets used to having doors slammed in your face.  She told me it would be a privilege to have Micah in her school.  When everything seemed fairly perfect,

We then did the unthinkable.

My husband decided to do a sabbatical in Israel.  We moved with our four young children to Israel, enrolling them all in the public -school system.  About half way through the year, something incredible happened.  The teacher told me that Micah had a friend, and she suggested we invite this friend to our home.  Micah was 11 years old. I had never heard of anyone wanting to be his friend.  There were people in Winnipeg who were assigned to be his friends – but this was different.

Although initially my brain raged against it, I started to appreciate the segregated educational system in Israeli society. 

When we returned to Winnipeg, I started looking for a cluster program where Micah could be with adolescents similar to him. We began talking about the next transition: residential housing. 

In order to have Micah move out on his own, we must first identify at least one potential roommate.  I began speaking to other parents, asking if they had considered residential housing for their child.

At one point, I made a cold call to a mother, and to my relief, she did not brush me off.  Instead, she suggested we meet for coffee and bring a picture of our children.  My husband and I, and the other couple, met in a café, armed with a large picture of her daughter and our son.  We chatted and talked about our children, reassuring each other that they were non-violent – the biggest sales pitch for a parent of special needs children.

The other mother suggested we start a bowling routine.  After about a year, this plan had become so wildly successful, that her daughter, who is non-verbal and averse to being touched, was holding my son’s hand at bowling on a regular basis. 

Step one accomplished: we had a potential roommate.

The government told us they were only funding homes for individuals on their crisis list. My response: give me some time.  If you wait long enough, we’ll all be on the government’s crisis list.

One night, at supper time, my husband said to Micah, “Micah, we have been talking for a long time about you moving into a group home. A house has been bought, and this will be your house.  You won’t be moving in right away, but eventually you will move into this house.” There was silence for a while, and I thought, “Micah doesn’t understand”.  We sat down to eat supper and still Micah was quiet. After about 10 minutes, he looked at my husband and said, “You can move out, I’m staying here with my mother”.

There is no guidebook for a parent as to how to let your adult child with special needs leave your home. But the longer one waits to make the change, the harder it becomes on both parent and child. Micah moved out at the age of 26. We had begun planning this transition nine years prior, and many times along the way, thought it would never happen.

Moving out doesn’t mean that Micah can’t have sleepovers in our home and regular visits.  Micah comes to our house every Shabbat and all Jewish holidays.  When asked by the staff at his day program if he is happy in his new house, he said, “I am happy.  My siblings moved out and it was time for me to move”. 

Karla Berbrayer is a Winnipeg parent whose son is living in supported residential housing. As an advocate for independent living for special needs adults, she speaks in a variety of forums giving the parental perspective. Karla is the Founding Artistic Director of the Rady JCC Music ‘N’ Mavens series, a daytime concert/lecture series presenting events twice weekly throughout the winter months, as well as the Music Producer of Winnipeg’s Tarbut: Festival of Jewish Culture. 

Everyone has a Story. What’s Yours? Share your Story; Leave a Legacy. —PK Press

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