Behavior is communication

I am at the beginning of a quest to determine to what extent Roo's behavioral challenges have to do with sensory processing.  She has had issues for quite a while now with "non-compliance," being too physical with other children, running away from caregivers, etc.  The difficult thing when a child has an underlying, and highly complicating, condition like Down syndrome (or Autism), is figuring out exactly when behaviors are sensory related and which are "learned" behaviors that developed in response to something affecting them, externally or internally.  What I know now (wish I had known years ago!!!), is that parental or other caregiver response to a challenging behavior can reinforce it and turn it into a learned behavior.  Once learned, whether or not it was initially sensory related, the behavior becomes more difficult to modify.   Most behaviors manifest when a child is trying to obtain or to avoid something.   Behavior is Communication is a mantra I didn't coin but do try to take to heart.  The problem is that I am often confused by what exactly my darling now 8 year old is trying to communicate with her behavior.

When I went to pick Roo up on Friday to head off to the Speech Clinic, her aid told me she was not willing to work much at all with her that day.  She said she was trying to introduce new concepts to her and that she became more non-compliant than usual.  Not her words, but the gist of it.  I told her that used to happen when I was homeschooling her last year.  We'd be going along okay and then I'd try to move forward and she would dig in her heels and flat out refuse to do the work.  This would go on for a day or two and then something would eventually click with her and we'd start to move forward.   I recognize that she was trying to communicate with her behavior that the work was hard for her and she didn't want to try it.  When that happens, I know (and now her aid knows) that it will take extra coaxing and lots of patience to get her going again.   The great news about her aid is how much she has invested herself in helping Roo.  I can tell that she loves her and wants the very best for her.  Thank you God!

It is still often challenging to take Roo out by myself to a store or someplace with tons of distractions and stimuli.  A few years ago I was talking with a mom of a little girl with Down syndrome a year younger than Roo.  I mentioned in passing that we had finally started going to Starbuck's together and that it was going okay.  She couldn't believe that it was so hard to go out with Roo by myself because she and her daughter did that often.  Well, as with all our children, everyone is different, and what works well for some doesn't always for others. Now I'm starting to wonder if the root cause of Roo's less than desirable behavior when we would go to the mall or some other highly stimulating environment is that it was just too much for her.  Too much noise, too much visual stimulation, just too much of everything bombarding her eyes, ears, etc.  Put her in a big, open space like a mall and all she wants to do is dart away and go sprinting down through the middle.  The silver lining in that is that there is hardly any fat on that little body!   But, it makes for moments of sheer panic if I have to sprint off after her.  My knees are not at all what they used to be! 

I need to write a post on Inclusion because I have tons of thoughts on it, but will save that for another day.  I truly believe educating kids with disabilities with their typical peers to the maximum extent possible is the best practice, and the right thing to do; but placement isn't one size fits all, and for my little darling, time spent out of the classroom, one on one with her loving aid, working on concepts at her pace and cognitive level is the best thing for her.  Her team at school values her and does their best to give her time each day with her classmates, but I know the classroom environment is just too darn stimulating for her, in all ways imaginable, for her to be able to self-regulate enough to stay in the classroom the amount of time the other kids do.  I am at the beginning of this journey, though, and am hoping that with lots of support, information, and assistance from people who know about sensory dysfunction, that we can all help Roo learn to help herself deal with what is overwhelming to her in her environment.

I attended Marisa's ISP planning meeting last Monday. It's called an ISP or Individual Services Plan instead of IEP because she is in a private school and does not receive the same amount/type of services she would in the public system. At the meeting, after hearing the difficulty her SLP and OT had in doing assessments on her, and after discussing her many behavioral challenges and sensory needs, her first grade teacher (love her!) closed the meeting by sharing that she believes Marisa is the best thing that has happened to her class this year.  She said the kids love her and that they have grown in compassion and acceptance of differences so much thanks to getting to know her.  After I wiped the tears of gratitude from my eyes, I left knowing that even the darkest days are no match to what I know is right for my beloved child.