Friday, July 19, 2013

What Can I Say?.... Part I - Perception

Last week I wrote a post about some of the things that well-meaning people can say that hurt or invalidate the parent of a special needs child.  I had a large response from readers and many people asked, "Well, what can I say?"  So, I'm going to attempt an answer to that question.  But, considering the fact that every parent with a special needs child has different struggles and different personalities and ways they face those struggles, it's not going to be a simple answer.  Different people need different things and react in different ways.  But, I'm going to do my best to answer the question.  It's definitely going to take more than one post, though.

I think the first step in approaching a parent of a special needs child is not what you say to them, but how you perceive them.  If you have an accurate perception of them and what their life is like, you'll be more likely to say the right things.  As one of these parents, one of my greatest insecurities is that people will think I'm overly obsessive with my child's needs or that I blow things way out of proportion and completely find my identity in his disabilities.  I know this is a valid concern because people have treated me like I do this, and even said things to confirm that they feel that way.  Not only that, but I used to have those same thoughts about others.  I'm not trying to make anyone feel guilty for feeling this way, but I do want to explain why we parent's of children with special needs come across as being so consumed with our child's needs.

It's kind of a simple answer.  If we come across as though we're consumed by our child's needs, it's because our lives are completely consumed by our child's needs.  Our thoughts must constantly be centered on their safety.  Our schedules revolve around their therapies and doctor appointments.  Our emotions are tied to their every up and down.  Here's the example of my life.  And, please note, Levi's needs are minimal in comparison to so many other children.

First, my mind is consumed with his behavior and safety.  It HAS to be.  Levi is very high maintenance - I'm constantly having to stop what I'm doing to pull him off of some piece of furniture, to take some choking hazard out of his mouth, to tuck his penis back into his diaper so he doesn't pee on the floor, or to cover his eyes and make sure he's just spacing out and not having a focal seizure.  Like I posted here, he has no understanding of boundaries in public or outside.  We cannot go somewhere without holding him or having him strapped into a stroller or he WILL run off immediately.  Ironically enough, I just had to stop writing and go pull him out of a window sill that he had somehow managed to climb into.  Even if he's asleep, I have to be on alert.  If I'm unaware when he wakes up from his nap, the trouble he could get into is endless. Yes, many of those things are normal things that you have to do for a child, but that's when they're like a year old.  The average one year old grows out of that behavior.  Levi is going on three and I'm not seeing an end in sight.  It's exhausting and frustrating and yes, it's all I think about, because if I don't, he will get hurt.  I don't have a choice.

Next, our schedules are consumed.  My entire life revolves around Levi's strict schedule.  Levi doesn't sleep well at night so we are supposed to make him wake and sleep at the same time every day.  EVERY DAY.  No exceptions. This is so hard to do.  I put off starting this rigorous sleep schedule for weeks because I knew it would seriously cramp my already limited social life.  When he is awake, the time that I could spend getting things done or going out or playing with my boys is spent on therapies.  He has four or more therapies a week as well as scheduled respite time where I frequently have to take him somewhere just so I can go back home and clean my house without interruption.  Respite is nice, but it's stressful to have to take my kid somewhere just to get a little work done.  It adds an entire step to the process.
 I'm also supposed to work with him on his therapies in my own limited time every day.  Honestly, this rarely happens.  After his sleep schedule and his therapies, I've still got dishes to wash and laundry to fold and dinner to cook, not to mention my floors and bathrooms that rarely get cleaned.  I don't have enough time in my day to work with him in the ways that he needs. Then there's the paper work.  I can not tell you how many endless hours I have spent filling out intake forms and applications for therapies and services and calling doctors offices and hospitals to make sure we've got the bills and appointments figured out.  On more than one occasion, I have spent all of my available time for two to three weeks straight (no exaggerations) sitting at the computer, writing emails and filling out forms.  It is never-ending.  And then, considering that he is a high maintenance child, I'm constantly interrupted and have a very hard time getting things done.  My house is a mess, my laundry is dirty, and my Toby, my sweet sweet Toby doesn't get the attention he so needs to have from his mommy and daddy.  That I can't keep up with my housework and that I rarely get a chance to work with Levi and that Toby gets so little attention makes me feel inadequate as a parent.  I can only imagine that most parents with special needs children struggle with this same feeling of inadequacy.

Finally, there's the emotional side of it.  First, there's the aspect of having to let go of what we thought life was going to look like.  We have to give up dreams and ambitions that we wouldn't have to give up for a "normal" child.  In fact, our entire idea of what life would look like is gone. I talked about that here.  The emotions that a parent goes through with this are very similar to the emotions that people go through with death.  I'm not trying to compare disabilities with the death of a child.  But, in a small way, we did lose a child - the child we had no longer exists.  It's painful and just like in death, that pain may never completely go away.  
After working through the emotions of loss, we still have the day to day emotions of seeing how our child progresses.  Every parents emotions are connected to their child's well-being.  And, the well-being of most of the special needs children that I've known varies from day to day, week to week and month to month.  For instance, six months ago I was so excited that Levi was learning new words on a daily basis.  His weekly visit from his teacher, though, would vary.  Sometimes the visit would go well and sometimes it wouldn't.  But, overall, I thought he was really gaining some ground and had high hopes that he would catch up completely.  Then we went to see Dr. Schultz, who said that even though Levi was learning new words, he wasn't growing as quickly in communication.  The gap had actually grown between his language and his communication inciting concern for autism (emotions down).  The autism test was negative! (emotions up)  But, the gap was still growing and if it keeps on growing we may have to do autism testing again later (emotions not knowing what to do).  And then Dr. Q told us about the possibility of things getting much worse (just plain horrifying).
As a parent of a child with special needs, I've been through a gamut of emotions that I had never experienced before - fear, hope, insecurity, inadequacy, stress, depression, anxiety,uncertainty, and some emotions that I can't seem to put my finger on.  The exhaustion doesn't help.  Like I said, Levi doesn't sleep well.  So, I don't sleep well.  Some months are literally like having a newborn in the house waking every few hours.  Being exhausted and facing the stress and emotions that come with a special needs child is not a good combination.

So, if you find yourself in a conversation with a parent of a child with special needs, and you feel like they only ever talk about their "special" "needy" child, take a look at your own life.  What do you talk about?  More than likely your conversations revolve around your job and your children and what's going on in your daily life.  The thing is, with us, special needs is our job, it is our child(ren), and it encompasses everything that goes on in our daily lives.   We don't get to separate our lives into different sections.  It's all one big ball of special needs.  So, of course it's what we talk about.  We're not looking for pity.  It's just all we know.  Understanding that, and not judging us for it, is the first step to approaching us in a way that won't hurt us.

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