No matter how how well L pays attention, makes eye contact, independently expresses what she wants verbally, has little stimming or their infamous explosive, seemingly irrational tantrums, my daughter still has autism and will always have autism. At times, I forget that she has autism when she won’t look at me, has difficulty telling me what she wants, starts doing odd hand movements or creates a pattern of repetitive phrases, and especially when she freaks out over something miniscule. Despite all the scenarios where the autism reveals itself, it’s never going to go away one day, or be cured by one or all of the interventions we attempt.
After picking up L from school one day, she walked into the front door, slipped off her favorite pair of Crocs, and ran back to her room stripping down naked, so she could put on her favorite outfit: a pair of green biker shorts and an almost too small pink Gap ice cream logo tank top. While I have finally accepted that this quirky behavior is probably more associated with her sensory needs and being comfortable at home rather than being defiant and fixated on this particular shirt (she does have other favorite outfits and will willingly wear other clothes to school), the struggles and frustrations of autism revealed itself when L couldn’t tell me what she wanted. Usually, she has no problems telling me she wants something to eat, drink, or what she wants to play with, for she has a few words and simple phrases she knows (drink, hungry, kitchen, eat, iPad, yes, please, no, I want, can I have, etc.), but on this day she just couldn’t get it out. Because she has the words, this typically frustrates me – especially when she mumbles the words in a very low tone – so I have to continually prompt her with ABA strategies asking, “L, what do you want? I (I) want (want) ______”. With prompting, kids with autism can sometimes be too dependent on verbal/ gestural/ physical prompts, so then they don’t ever attempt to do things independently since they can just wait for the prompt (brushing teeth, playing with a toy, saying a sentence, etc.). With these concerns already in my mind, yet still prompting her, she still wasn’t able to do it. After 2-3 minutes of this, she suddenly breaks down crying and starts screaming. We go to her bedroom, I instruct her to lay down on the bed – which only increases the screaming now – but then I noticed something I had never seen on her face before: pain from not being able to say what she wanted simply because she did not know the words to use. 😦
After she calmed down (always following through with ABA and not rewarding screaming behavior), I had her get out of bed and said, “Show me what you want”. She then walked over to a box that was shut with her Tinker Bell fairies inside, but she couldn’t open it. While she could have said, “I want Tinker Bell” or “fairies”, she really wanted help opening this box, which she didn’t know how to ask for it when we were in another room away from what she wanted. While this event only took 5 minutes, it brought me to tears as I felt sorry for my baby girl and how autism and her speech apraxia affect her every day life.
This is just one of the many times autism makes living a normal, simple life difficult, and I become discouraged. Accepting these obsessive, overly dramatic moments is constantly a new lesson each time it happens, especially when I think we overcome one battle, it is easily replaced with another one. Despite these struggles, we are so blessed that we have come as far as we have with all the therapies, dietary interventions and reshaping our parenting style. Ultimately, I hope to fully accept autism in our life and can be more compassionate and patient as my daughter gets older and will develop new behaviors. Thankfully, the good times always conquer the bad.