The quiet desperation of behavioral challenges

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.

New Year, new lease on life

Not sure what happened back in October that made me take such a long break, other than the sheer craziness of the succession of fall holidays with added errands to run, parties to go to, shopping to be done, Christmas programs to attend, etc., etc.  We had good days and not so good days, but were able to do most of what we had hoped to do, such as attend Christmas Eve Mass as a family finally.  Spouse plays guitar sometimes at Mass and he was up front with the other musicians, but Nadia, Marisa, Grandpa (My Dad) and I had good seats, and were able to worship together along with a huge crowd of people we know and people who just showed up for the special occasion.   We made it to Marisa's first Christmas Program at her new school and she did a great job.  Her aid really showed us what a gift she is with the program.  Her kids go to a different school and they had a performance the same night as Marisa's.  Her kids also had an afternoon performance, so she arranged to go to that so she could be there to see Marisa perform in the evening.  She does things like that and endears herself to me more and more the more I get to know her. 

Now that we've recycled the 2010 calendars and hung up the 2011 ones, I look forward to gradually making some positive changes in my life and home environment.  I've been steadily sorting, cleaning, donating and generally downsizing the stuff in and around our home.  I got through most of the stacks of papers sitting on my dining room table (my home office area) before the holidays and am trying not to let too much accumulate there now.  My goal is to have a place for everything and everything in its place early on this year, so I can take a deep breath and enjoy the absence of clutter, in my life and hopefully in my brain as well!    I'm trying new recipes and focusing on adding more healthy ingredients to our daily meals.  I cooked a big batch of kale for dinner this evening and true to form, big Sis didn't go near it, Spouse just "tried" it, and Marisa said "Yummy!"  She is truly my best eater.   I loved it too. 

I'm also trying to not be so busy all the time this year.  I love getting together with my friends but am trying to limit that to just a couple of times a week instead of meeting someone somewhere every single day.  Being at home more by myself allows me to work on the multitude of small projects around the house and offers me the time to work on the book I'm writing.   I've been enjoying some major down time this week so far, but will probably be feeling antsy by next week and asking for more coffee dates once again.  

I've been using a friend's light box to combat my self-diagnosed bout of SAD, and it seems to be working.  I've used it for a week now, in the morning while I do computer stuff, and I haven't been quite as tired or felt as overwhelmed lately.  That's the good news.  The bad news is that if I am convinced it really, truly works, I'll have to spring that budget item on Spouse and listen to his groan.  Oh well.

Here's too more good days than bad, and making small adjustments here and there that lead to a happy New Year.