If you’ve read other post on this blog or followed my notes on Facebook, you may have an idea if what Danielle was like at age 2 to 3 years old. At that time, our biggest questions were, “what will she be like when she gets older” and “will this behavior ever change?”
Danielle is 10 years old now, and at age 10 the results are mixed. Danielle has shown tremendous progress in many ways. She is very well behaved in public settings; she has maintained her warm disposition and friendly manner. She is very enthusiastic about school; she is very social and loves spending time with her big sister and her sister’s friends.
On the other hand, Danielle’s behavior at home has not changed much. She still has a fixation with water, though it is easier to redirect her to other things. She still insists on climbing on kitchen counters, running through the house, spinning, opening and closing the refrigerator door and climbing into and out of the dryer. When you stop her from playing in the kitchen sink, she starts opening and closing the refrigerator door. When you stop her from opening and closing the refrigerator door, within 30 seconds she is climbing into the dryer. It’s nonstop and makes for some really tough days when school is out.
If someone had told me 5 years ago that we would be dealing with many of the same behavior issues at home when Danielle was 10, I would have been deeply depressed. Knowing that after 5 long years of constant work and training that we would have seen so little progress may have been too much for me to handle at that time. However, with time comes wisdom (…hopefully), I realize that the past 5 years was not just about Dani’s progress with autism, it was also about my progress with autism. I needed the past 5 years to understand the tremendous blessings that this family has received. It is not about what Danielle hasn’t accomplished, it is about what she has accomplished. Looking at it from that perspective, we are very fortunate. The list of what Dani can’t do is fairly extensive but not if you compare that list to the one we had 5 years ago. My point is, as parents of children with developmental disabilities we must learn to recognize and celebrate every single accomplishment and every bit of progress our children make. Anything else is unfair to the child and to the parents as well.
This brings me to a second topic that all caregivers and parents of children with ASD must eventually face, what part of this behavior can be attributed to the disability and what part of this is simply bad behavior? It’s a critical question, the consequences of which could greatly influence the lives of the special needs child, the parents and siblings. If a parent assumes that all behavior is due to the child’s disability, they can become overly permissive. A lack of boundaries is detrimental to any child, especially a child with developmental disabilities.
On the other hand, a parent/caregiver who assumes that strict discipline is the key to controlling all behavior is setting themselves up for disappointment and frustration, as well as setting their child up for failure.
So, what is the answer? I’m not going to pretend to have an answer for everyone but I do know what works for us. As Danielle is maturing, her understanding of what is being said has become very clear. There are still some complex requests that she doesn’t seem to grasp but otherwise she is very sharp and extremely resourceful. Danielle does however, still get fixated on things; her favorite object of attention is still running water. If Danielle is fixated on running water in the sink and I tell her to stop and she doesn’t, then that is her disability.
When I walk over to Danielle, turn off the water, make eye contact with her and say, “stop that”, her focus or “fixation” is temporarily broken. This is where the behavior comes in; Danielle now has an opportunity to make a decision, she can do as I ask or she can go back to what she was doing before I stopped her. Interestingly, if Danielle decides to go back to what I stopped her from doing, she will usually give me a “sneaky” little smile and she'll stare at me as she begins her mischief all over again. It’s the ultimate in defiance and she knows it. That’s a behavior issue and something that gets addressed immediately. (Unfortunately for us, it’s hard to get upset with a kid who’s laughing at you the whole time you’re scolding them. Just try your best not to crack a smile).
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