Hannah was diagnosed with autism late at age six. In my opinion many factors contributed to this late diagnosis included her being female (the diagnosis of autism is significantly higher in boys), her heart condition that made her health first priority, lack of awareness and lack of resources. The journey to this diagnosis included me gathering information via magazine or newspaper articles, television shows that I either recorded VHS style or were given to me VHS style or happen to catch at that moment and a family doctor that really listened to our concerns. Being the mid ’90’s there was not a computer or access to internet.
While we tried to sort out what was simply a sick child not playing or something deeper with her lack of development we noticed that Hannah really enjoyed one activity. Creating towers. It started out with wooden blocks then graduated to duplo blocks. Hannah would make large duplo block towers, the towers would crash on their own or she would take it down and she would start again. We attempted with her ABA program to show her other ways to build with duplo blocks with little success although the process in itself I feel is successful as it stretched her mind – and we all need to do things we do not enjoy just to see where our interests lie and do not lie.
Somewhere and somehow the duplo block towers transitioned to a “house” as Hannah called it. A base plate with duplo blocks forming a square, which was filled in with duplo blocks and built up – filling it all the way. For 20 years Hannah built duplo block houses. She had a height in mind, the house would be take down and started again. This became Hannah’s “thing” to do – her de-stress, her time to relax and enjoy herself. Whenever Hannah was sick we knew because she would not have energy to play with duplo blocks. When she regained interest in duplo blocks I rejoiced knowing she was on the mend. Our new home that we built had a duplo block cabinet custom made with 2 containers that fit. Hannah never really got over that her duplo blocks needed to be in two containers instead of one and her main goal became building enough to fit all unused blocks into one container.
We found ways to use duplo blocks as it filled her time and eliminated the need for us to provide activities. We monitored how long she sat playing duplo blocks – sitting on the floor with a straight back, legs straddling the base plate. What perfect posture. We sometimes watched with interest and amazement how quick she was in assessing which blocks she needed and thought someone should be tracking this and seeing if there is a pattern. She planned and cleaned up duplo blocks well. After 20 years we had it working for us. It was part of her – like a best friend, a partner, a soul mate.
Two weeks ago Hannah came home from work, had her snack and went to the washroom. She went to the cabinet where the duplo blocks are stored and stopped. She looked at the couch and said “There’s the couch”. Confused, I asked her “Did you want to sit on the couch and watch TV?” To which she said, “Yes. I don’t have time for duplo anymore”.
Concerned she was getting sick I set her up on the couch (remembering that we literally taught her how to sit on the couch to watch television) and watched her like a hawk.
Health wise she continued to be fine but daily she denied her daily duplo block building. After a week or so of not hearing the clickity clack of duplo blocks I realized something in myself. I missed it. This had been a part of Hannah since I could remember. What does it mean to take care of Hannah without the luxury of duplo block activity?! What will we do to fill that time? Her interests and abilities are not great. I was surprised that tears of sadness, a little anxiety and wonder appeared. I realized that she has outgrown things in her life – her blankie, thumb sucking and play structures. Other things like “Barney” have forcefully been outgrown in her by me.
The weekend came and I worried even more – how would we engage her day without the 1-2 hours of duplo block activity? I began putting her to work with extra errands around the home to which I was surprised that Hannah agreed to with different levels of happiness. Could it be that she wishes to be more engaged in life? Could she have hit the 1,000,000 mark of duplo block homes that it had officially expired? We will never know.
For now she is happy and continues to tell us “She doesn’t have time for duplo anymore” and shakes her cute little head. Sure would be nice if there was a “What to expect when parenting an adult with autism/special needs” book. I would settle for a pamphlet, a leaflet, a paragraph, anything!! It is strange how we take whatever weirdness is thrown at us and make it work. I suppose that is called adaptability and we will adapt to this new normal.