by Lyn Waldeck
While there are many children on my caseload that I am very proud of, with this particular issue I want to do something a little out of the box. Rather than brag about a child, I want to share with you how incredibly proud I am of one of the mothers that I work with. Since this is actually the month that we celebrate Mother’s Day, I want to share with you the celebration of Victoria Jones. Like too many of the families in our generation, the Jones family faces the struggles that come with the now 1 out of 88 children who are considered within the Autistic Spectrum. For the Jones family, though, the statistics were even crueler. Of their 3 wonderful children, two of them are traveling a very difficult road. The child that I would like to focus on is Johnny, the younger boy. Let me paint a picture of where Johnny was. To start with, his ability to focus in on the correct auditory information in his environment took considerable effort and often the environment was way over-stimulating. Because his neurological response to deep tactile was so low, his play tended to be on the rough side. Due to his auditory sequential processing delays, his ability to follow directions was lagging way behind his chronological age. His deficits with working memory caused an inability to work through things in his head and come up with good solutions or make appropriate choices. While language and conceptual thought (thinking in words) were delayed due to his processing difficulties, his visualization, in contrast, was “off to the races.” The gap between the visualization and conceptualization created his tendency for frequent melt-downs. To add to all of these developmental pieces, from a physiological standpoint, this young boy was wound tight. This combination of issues led to many conflicts with siblings, other children, and adults as well. The amount of stress for mom and dad was tremendous, as the rest of the world would tend to look upon the situation without the understanding of the developmental pieces and quickly judge a “behavioral problem.” Many of you can imagine these circumstances. Some of you live them.
We actually started with Johnny quite some time ago. He had some evaluations and was beginning to make some strides in sensory perception and auditory sequential processing. His language improved, although much of it was visually based. But his time with us in the earlier days was cut too short. His parents came across a very, very expensive “specialty” school for Johnny. At the time, it seemed the right choice to them and they left NACD, thankful for the changes they had seen with both of their children, but wanting to seek another avenue.
And then…time passed. As time goes by, children should be getting better, right? Unfortunately when the balance of the visualization and conceptualization is so out of sync, and the child spends more and more time doing the wrong things, the gap becomes more and more gargantuan and the function and behavioral patterns decline rather than improve.
When I saw the Jones family reappear on the schedule, I was excited to see them return and yet at the same time was a bit apprehensive. At the first appointment, the first phrase that comes to mind is, “Houston, we have a problem.” We were now working with an even bigger gap between visual thought and conceptual thought. His mind was held hostage to his overly visualizing brain, and every word, every action, and every thought displayed this. We also had a child who now craved the intensity that negative behavior was getting him. These were the biggest obstacles in our path. In addition to that, the school that was promoted as a “Reading Specialty” school had only brought the child up 5 months in 2 years time. That is what I saw in the child. Let me tell you what I saw in the mom. Pure desperation. I will never forget the moment she looked me in the eyes and said, “I am the only one who believes in him. I am desperate. I will do whatever it takes. I have no choice.” I looked at her, knowing she meant every word of it and simultaneously knowing what it would take and how hard that was going to be. Our immediate task at hand was to create a situation where we were in total control of every aspect of the child’s environment, as well as every moment of his existence. We had to instill a desire for positive reinforcement while we simultaneously worked on fixing the broken developmental pieces. Mom took him out of school and began a 24/7 intervention protocol with help from dad, a personal trainer, and later a personal sports coach.
Now 6 months have passed. In a recent email to me mom referred to herself as the “wolf slayer,” after I told her that she may not be completely out of the woods, but at least the nasty wolves are no longer snapping at her heels. We can laugh now, but I know that her place in life 6 months ago was no laughing matter. Let me tell you where we are today and why I write the article not only to lift her up in a “brag,” but to encourage any of you that are living anything close to her life. First and foremost, we have a happier boy. Meltdowns are lessened, and he is proud to tell you of the good things he is doing and the wonderful things he is learning. His conversations are more on target with the questions you ask rather than a movie script that is triggered in his head. In six months time his reading recognition score has increased by almost 2 ½ YEARS. We are making strides in working memory as well as conceptual thought. When wrapping up his eval, as he waited patiently and in a very well behaved manner, I told her that in working with him I no longer feel as if I am walking through a minefield that could trigger a blow up at any moment. After they left the evaluation, a new family who had arrived early commented, “What a well behaved child.” It is so rewarding when the rest of the world gets to see the sweet child that the parents and I always knew was there.
Happy Mother’s Day to you, Victoria, and to all the other mothers like you out there.