Joshua Adjusting to Something New…
By: Nancy Latowsky, MEd.
When something significant happens or will happen in a family how much information do you choose to provide to an autistic child or adult to prepare them?
As a parent of Joshua up to his current eighteenth year preparation through scripts and social stories have been a huge part of our life. Mark and I have created stories about almost every activity you could think of: going to school, toilet training, family members going away on vacation, sleeping away from home, even death of a family member.
We are often told that people with autism are 'in their own world' which means to many that they 'cannot feel' or will not 'notice things' that are so obvious to most of us. We are often told they 'won't understand' what you are telling them. I often wonder if such assumptions are protective of us or them. Whether they are warranted or not. People often say that those with autism are unable to understand that other people have different feelings or thoughts than they have.
Joshua has always had a very special bond with his papa Alby (my father in law). Papa would often take Joshua for a ride in his car. They had a wonderful routine including having a stick of gum, put the car in reverse, turn on the cd player, listening to Frank Sinatra. Papa would visit with us at our home and have lunch with josh and us every weekend.
For the last six months Joshua and the rest of our family are adjusting to something new. Papa is eighty two and time and health has caught up with him: he has had bad circulation in his leg for years and in the summer needed a graft. This failed and he then had to have his leg amputated above the knee.
Joshua visiting Papa at St. John's Rehab.
Joshua visiting Papa at St. John's Rehab.
Since he has been in hospital I have been spending much time in thought about how to prepare Joshua for not seeing his papa every Saturday at lunch time and how to prepare him for seeing his papa for the first time, not in a car or at our home for lunch but at a rehab site. I have also been thinking about how to explain to Joshua why papa has no foot. I have been trying to imagine what it may be like for Joshua, if it would be scary, if this fright stemmed from difference in routine, difference is physical appearance, or whether it could be in fact empathy. I have wondered how similar or different his reactions would be than mine. Certainly there is difference in our expressive language but what about his internal thoughts? Perhaps he is thinking of the same fears/uncertainty/ change and loss I am thinking of. Perhaps not?
With limited expressive language is difficult to know the specifics of Joshua's feelings or thoughts. Yet Mark and I felt it was important to tell him a simple story and prepare him as much as we could. We told him that his papa's leg was sick and needed to be removed and that he was now better and needed to have a new leg (prosthesis).
Joshua visited papa twice. On the first visit he did not see the leg and did not give much emotional reaction. On the second visit he saw the stump and the reaction was guttural: he moaned and flapped and said 'angry' and 'joshua frustrated' and 'november 5th, 2009' which in Joshua language means "I was sick on November 5th, 2009 and I remember the feeling'.
Joshua has not wanted to go back to see papa in his rehabilitation setting. When asked to see him he says 'no no no'. Yet Mark and I feel that his protest suggests a shared emotion. Joshua is frustrated and angry most probably at his loss (loss of the routine) possibly he is scared but perhaps this is true empathy for Papa. We will never know. Although his reaction to Papa's illness differs in richness and complexity compared with his older sister Sarah, Mark and I have learned it was worthwhile to assume he can understand enough, that his reaction suggest autistic or not, underneath the explanations and language, people are people.
How Our Lives have Improved Now that Our Son is in a MukiBaum Group Home
Our son Howie began his therapy and education at the age of seven in the Children’s Day Program. When Howie turned twenty-one years old, he graduated to the Adult Day Program. When he turned twenty-five, he was integrated into a MukiBaum Group Home. He was ready and we were ready for his transition into manhood and independent living with professional assistance and care.
We worked with the agency and four other families whose children were also ready to move out and into a MukiBaum home and raised enough money to buy 26 Rockview Gardens. Howie only lived there for a few years, because he learned how to do more for himself and became too high functioning for that particular group home. Howie now lives at Eckler House.
Since moving out, Howie takes care of his own hygiene and enjoys outings and quality time with his peers, whether watching T.V., listening to music or going to the mall or out for coffee, or doing chores like preparing the table for dinner. Howie also does his own laundry and when he comes over to our house to visit, he sets the table for our dinner and puts his dirty dishes in the sink afterwards. He never once attempted any of these things when he lived with us full time.
Howie comes home a lot. He is with us most week-ends, and gets to sleep over in his old bed every Friday night and sometimes more often than that. Since his dad and I have more adult time for just the two of us, we have established friendships with other couples our age and enjoy going out for dinners, movies, dancing and trips.
We are still involved with Howie’s total care and anytime a major decision needs to be made, or if there is a situation that needs to be addressed, we are notified and consulted on every issue and work together with MukiBaum to provide Howie with quality care in a caring environment.
Howie is now 35 years old and has enjoyed living in his own home for ten years. He has grown and matured into a gentle, affectionate, well-managed young man and we are both grateful to MukiBaum for providing Howie and us independence and a safe and secure future, especially now that Howie has two loving homes.
In Loving Memory of Aurora Wan
The entire MukiBaum Family, including all of the staff and the people we serve, are in mourning over the loss of "Our Princess", Aurora Wan.
Aurora passed away after a short illness on Monday, February 11th, 2008 at 8:26 am. She attended the MukiBaum Children's Day Program as a child and upon adulthood, she lived in one of our High Support Residential Group Homes and attended our Sensory Motor Therapy Program within our Adult Day Services.
Aurora touched every person that had the honour of meeting her. Her smile lit up the room and her playful personality sparked her nickname, "Princess".
On Wednesday, February 27th, MukiBaum held a Memorial at our Adult Day Services so that the people we serve and the staff were able to say goodbye to Aurora and were given the opportunity to share special memories with one another about the good times that they shared together.
We were very pleased that Dr. Milton Wan, Aurora's Father, was able to attend and witness first hand how much she was loved and will be deeply missed. At the memorial, Dr. Wan read a beautiful letter that he and his wife Renee wrote to the MukiBaum Family. The letter read as follows:
February 27th, 2008
Dear Dr. Baum, all the staff and workers at MukiBaum,
We still vividly remember the first time when we met with Dr. Baum, her message was, "No kids will be turned away from here."
Since the days she was with the Day Treatment Program, MukiBaum was the only place outside of our home and church that Aurora had been received and embraced with acceptance, care and love. MukiBaum was Aurora's home away from home.
Thank you, everyone -- for loving and caring for Aurora all these years with such professionalism, dedication and humanistic spirit. As parents, we also felt very supported and no longer lonely within such a loving community, especially during times when we were physically and emotionally exhausted. Your care and support for Aurora has enabled us to bounce back and fight and advocate for children like Aurora in other corners of the world.
THANK YOU VERY MUCH!
Milton and Renee
Aurora Wan's Parents
MukiBaum will never forget you Aurora - your memory will live in our hearts forever.
Dr. Nehama Baum, Founder and Executive Director of MukiBaum Treatment Centres, was asked to write an article about her experiences as a parent to a son with complex disabilities. It was published in The Autism Acceptance Project's October 2006 publication.
To learn more about The Autism Acceptance Project, visit www.taaproject.com.