One of the reasons I haven't been posting, and may not get this blog off the ground at all, is that I've been working quite a bit on trying to figure out why little one's behavior is so challenging at times, and what to do to support her at those moments. Last school year, both when she was in public school briefly, and when I homeschooled her, I was going down the path of trying to figure out, and then get her diagnosed if necessary, with ADHD. This year my thinking has changed and now I'm researching SPD - Sensory Processing Disorder. The two conditions share some symptoms and manifestations, but they are treated differently. Some day when I have time maybe I'll write more on this, but for now, I'd like to focus on what dealing with either of these potential conditions, in addition to Down syndrome, has done to my daughter, myself and other people in her life. We have good days, great days in fact at times, and then we'll go through a pattern of frustrating, non-compliant, achingly awful days. Those days I struggle with horrible thoughts at times, wondering why I am stuck in this life, why she can't just do better, and how much I want to flee the situation, if even for a little while. The other day, after a rough day at school, with multiple instances of running away from her aid and others, then inability to work at all at Speech therapy, then a breakdown at Yoga class; I just wanted to get out and away. I thought about leaving for a while when my husband got home, but it was pouring rain and I ended up just staying home and dealing with it. It's funny because my husband said, "Why don't you go to (a local restaurant/bar) and have a drink?" I think he was kidding! I haven't even been in a real bar in decades and don't intend to start having a drink for relaxation and falling off the deep end of the slippery slope! I don't think it's wise to "medicate" borderline depression with alcohol, but I know he meant well!
When Marisa was in preschool, a 2 day/week Early Intervention program, she was placed as the only girl in a class with 6 boys, several of whom had some pretty severe "behaviors." I questioned the placement at the time and was told that's all they had to offer. Things were going along okay and then suddenly, towards the end of the school year, her teacher (who had also been her Case Manager since she was 2 months old) informed me that Marisa had been overly aggressive towards several of the kids in the class. She was concerned that Marisa had an underlying behavioral disorder. This came as a complete shock to me because, although she could be somewhat rough at home, and often pushed, pinched, or otherwise got into our personal space, she had never been what I would term overly aggressive. This happened on two days in the classroom. I went in to observe 2 days and during that time Marisa did nothing negative at all towards the other kids. Another ESD employee, a man whose specialty is working with kids with challenging behaviors observed as well and he and I came to the conclusion that the aggressive behavior was just, in his terms, "a blip." After that, though, I severed ties with ESD. I did not want to continue to have her in that classroom. One thing that is very well documented in people with Down syndrome is their great (and sadly often to their detriment) skill at modeling behavior. I know some of the boys in that class had aggressive tendencies, and although I do not judge them, I had to get her out of there. She spent 2 more years in preschool but at a wonderful Montessori, not close to home but well worth the drive. She continued to have behavioral challenges, mostly personal space issues (not so much aggressive tendencies) and non-compliance, but that particular Montessori accepts kids with disabilities and the staff, kids and parent community were truly wonderful. Marisa thrived there overall. Her lead teacher has much experience with ADHD and she agreed with me that we might be adding on that diagnosis.
Cut to what is going on now. Right now I can't even remember who or what clued me in to the possibility that we are dealing with Sensory issues and not ADHD. I'm going to a workshop next month on supporting kids with SPD, and have lots of resources to look through to help determine whether or not it is present. The more I read and hear about it, though, the more it seems to fit, including even the incident in Early Intervention. Kids with SPD tend to be either over-responsive, or under-responsive (Sensory Seeking) to certain sensations. It's not generally black or white with these kids and they may share symptoms of being either under or over-responsive. There is a whole checklist of sensory symptoms and I need to sit down and consider it carefully in terms of how my daughter fits the profile. I checked with a specialist online and asked if a person could have a mild case of SPD because Marisa shows clear signs of some of the symptoms but doesn't fit at all with others. The therapist told me yes, you can have mild SPD and still be affected by it.
I like the saying "Behavior is Communication." I heard if from a wonderful behaviorist, David Pitonyak. He spoke at our local support group's annual inclusion conference a couple of years ago. I agree with him that the way we present ourselves, in good and no so good ways, is a form of communication. I think Marisa is trying to communicate her sensitivity to certain stimuli and am sad that it has taken me so long to realize that! One of the problems with having a diagnosed developmental disability is that there can also be factors in place that go unrecognized. Only fairly recently have doctors and therapists recognized that people with Down syndrome can also be on the Austism Spectrum, or have ADHD. It is known that people with Down syndrome often have sensory issues, but it's hard to figure out to what degree and how best to treat them.
So as I continue on this quest to figure out the best way to support my daughter, I've been having a tough time keeping up with every other matter in an already complicated life. There is still good news in all of this, though. Marisa is often times a funny, sunny, charming, loving and very bright individual. As low as I slide some days when all seems dark, I am comforted by the fact that her behavioral challenges are just one piece of her wonderful persona. She reminds me daily why I will never fail to fight for what she needs. She is worth all the effort.
No comments:
Post a Comment