Tuesday, May 31, 2016

When sensory issues are big issues

Memorial Day weekend.  There’s the actual reason behind it; honoring our fallen veterans, our surviving veterans, and all others that are or have served.  It has also come to signify the unofficial start to summer, BBQ’s, time with friends and families, and of course a three day weekend.  This particular long weekend was a bit of a struggle for a particular five year old in our house.  

She finished preschool last Wednesday and just had daycare on Thursday and Friday and struggled both days with behaviors.  On Friday her behavioral therapist texted me after her session with Tera and told me that she seemed to be struggling with sensory issues.  

Let me backtrack a bit here.  Before becoming a parent of a child with special needs, I might have been among the many to jump to the conclusion that a child acting out somewhere in public might be the result of a “different” parenting style, or just a stubborn, “strong willed” child.  But now I know better.   

Are kids being more aggressively diagnosed than ever before? Perhaps, but that is because what was previously viewed as a “problem” child or “behavior issue” may truly have been a kid that has some real issues that nobody really understood or knew about before.  And for anyone who is thinking this is made up or people are being highly sensitive, take a minute and think about what it’s like to know that your child is capable of being better, but they are constantly struggling against something that other people don’t understand.  And that if those parents, and teachers, knew of tools that could help reach those children, they would try them in a second.

My child is a stubborn, strong-willed child, but she’s also one that is affected by sensory issues.  She does not have a secondary diagnosis, but there is no doubt on the part of us as her parents, her teachers, or all of her therapists, that she is in fact sensitive to sensory issues.  What are these issues you might be wondering? I’ve mentioned them here before, but essentially she craves physical input.  I have a hard time describing it to other people, but I imagine it makes her feel antsy, distracted, overwhelmed, and frustrated.  What causes her issues? That is a great question, and one that we are constantly trying to figure out.  Oftentimes her behaviors are the result of not feeling well (refer back to November through January when she was so constipated and uncomfortable that her behaviors regressed significantly and that within a month of “cleansing” her, she was making huge positive strides).  Sometimes she is overwhelmed by people, excitement, a change in her routine, or something else we are totally unaware of.  Her usual ways of reacting to these things are hitting, drop downs (refusing to move or listen), pushing, flat out refusal to listen to direction or redirection, screaming, shaking, and throwing.  One of the ways I’ve found to help get her out of this (though it can be difficult to do and watch) is hold her until she screams and then ends up crying which usually indicates that she’s on her way to coming out of it and resetting herself.

This weekend, that had to happen multiple times.  The most frustrating part is we didn’t/don’t know what to do to get her back out of this slump.  We have many strategies to try when she gets like this: deep breathing, taking a break from everyone with either Tom or me, joint compression, hard squeezes, heavy work, and having her help someone with a task.  But they don’t always work.  

This weekend she got to visit with a lot of her favorite people, but she didn’t always handle it well.  And neither did I because it’s tiring and it hurts to watch her go through this. We tried giving her lots of outside time to get our her energy, we tried low key time to let her relax, we tried time at home, time visiting, naps, no naps.  We never found anything that really helped her “click” back into her other usual self.  And this is just one of the reasons why we are exhausted; regularly.  She’s not just a five year old kid doing normal five year old things.  She needs things like joint compression, meltdowns (not tantrums), time outs (which mean time to reset for her) cold baths (she runs very hot), and constant attention.  We’re constantly looking for and open to new things to try with her; sometimes they work, sometimes they don’t.  Sometimes we realize after a week or two of this that she’s sick and that was her way of telling us.  

These days it’s hard to scroll through social media and not find something or someone that is critical of every form of parenting.  My realization, and my challenge to others, is if you can find a minute to try and be compassionate about what might be going on with a particular child, or parent, you might find yourself judging a lot less.  

I know our family and friends know a lot about what we go through with Tera, but we (and her teachers) are the only ones that go through it every day.  Even on those rare days or weeks when one or both kids are sleeping through the night, I’m almost always thinking about whether Tera is struggling that day and what advice I can offer to help them/her.  It’s exhausting to think about your child’s behavior 24/7;  whether it’s to worry about how good/bad it is to then thinking about what might be contributing to it and problem solving.  And then making sure that everyone else that works with her (teachers, therapists, coaches) also know, is more draining than a lot of people imagine.  

And then add to this mix Zoey, our other stubborn, strong-willed child.  Zoey is almost two, discovering language, testing and pushing limits, still has her own health issues that pop up, and generally loves to interact with her big sister, but on her terms.  She has also decided that her first line of defense and reaction when she doesn’t get her way is to hit (usually Tera, myself, or Tom).  So at home with the two of them, Tom and I often find ourselves more as referees than parents.  Meanwhile Tera doesn’t understand that Zoey is still learning appropriate behaviors and Zoey doesn’t understand that for the most part, Tera is still learning that too.  

So once again let me clarify that I’m not doing this to ask for pity.  I simply share this because I want other people to be understanding of individuals they might come across that they don’t understand.  Most outings for us with Tera have to be thought through logistically.  Will she be entertained enough? Will she be expected to sit for any length of time? Are there other kids and if so, will that make it better or worse? Is it a new place? Do we have backup (other family and friends that she’s comfortable with)? And if she ends up having issues, is it somewhere we can leave easily?  When we say we can’t do something, or that it might be too difficult, it’s not because we’re not willing to try, it’s because we deal with so much on a daily basis, that adding something else to that can oftentimes feel overwhelming.  And exhausting.  Have I mentioned we’re really, really tired?