Our family lives with Autism Spectrum Disorder (ASD) every day. It challenges the way we do everything. Simple things like getting dressed, brushing teeth and getting ready for bed are difficult. My 6 year old son, J, was diagnosed with ASD when he was 4. I have to make sure that he has the toothpaste with Jake and the Neverland Pirates on it (hopefully Jake will continue to be cool for years!) and that he always has to have a red toothbrush (which are harder to come by than you would think). J has to watch 1 TV show before he goes to bed, has to have 1 story read to him and we have to leave the light on. Any interruption to these or any other of our daily routines will lead to a meltdown. Autism speaks defines Autism as: “Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances” The spectrum means that there are varying levels of the disorder. J is diagnosed as being mild to moderate on the spectrum.
So, in the last few years, we have become pretty good at knowing what will and what won’t cause a meltdown. I know that sometimes, he needs to have the meltdown and learn how to calm himself and move on. So, when his Legos don’t fit together properly and he starts a tantrum, I know what to do. I know that the episode will only last a few minutes and that once he has calmed down, we are permitted to help him with his Lego creation. We have learned that if we are not going to stop at Harvey’s for supper, which is his super special treat, we had better not drive by the restaurant if we don’t want to have yelling, screaming and kicking in the car.
Last night, however, I had an epic ASD mom fail! Our bedtime routine was the same. We snuggled up and read Green Eggs and Ham. We did hugs and kisses, told each other how much we loved each other and spoke a little about what we would do the next day so that he would be ready to face the birthday party we are going to later this afternoon. I let him grab 1 more book that he could look at on his own before he fell asleep, tucked him and then left to back downstairs. A couple of hours later, I went upstairs to go to bed myself. As usual, I looked in on my sleeping boys, I gave the baby (he’s 2, so I guess not a baby anymore!) a little kiss and straightened his blankets. Then I went to my older son’s bed to give him his kiss and straighten his bed and found about 20 books in his bed, under and over the blankets. I giggled a little to myself and took a photo of him, which I had planned to share onFacebook in the morning since he was so cute! I picked up all the books and put them on the shelf, like any good mom would do. Then, I turned on the nightlight lamp and turned out the big overhead light and went to my own bed. At about 3 am, I awoke to the loudest screams I had ever heard. J was having a meltdown! I jumped out of bed and ran to his room. I couldn’t figure out what the trigger was. I sat on his bed, held and rocked him for what seemed like forever. By then, the little one was up and crying (hubby had to take care of him). Once J had calmed down, I managed to ask him what was wrong. He was upset because his books were gone! So, because it was the middle of the night, I got all the books and put them back on the bed. But, alas, I had forgotten the porcupine book! So, this led to another meltdown; thankfully a short one since I found the book and put it with the others. It was 4 am when everyone managed to get back to sleep.
I am thankful for my sons everyday. I am usually even thankful for Autism. I know that it has changed the way I raise my kids (my 2 year old is going for diagnosis in March),but Autism comes with some special gifts. I cherish each of the gifts that it has given my children. Now to decide how we are going to handle 20 or more books in bed; just let him sleep with them, work hard on showing him that it is ok if Mama puts them away once he’s asleep or teach him to take only 1 book to bed!
That picture I took of him all cute with his books in bed; will I post it to Facebook anyway as a cute moment,or delete it?
References: Autism Speaks Canada: http://www.autismspeaks.ca/
Photo: Metropolitan Police Services-Katherine Goodsell