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.

Saturday, July 13, 2013

Soap Box

So.  I try really hard to keep a positive outlook.  I try not to complain and I try to look at the bright side of everything that's happened with my Levi.  But, after nearly a year of being positive and upbeat, I'm going to get on a little soap box.  I think I've earned it, and not just because of what I've been through, but also because I used to think (and probably say) the same things that I am being told on a regular basis.
To start with, if you've said some of the things I'm getting ready to complain about, I don't want you to feel bad.  You're not the only one who's said it to me.  And, like I mentioned before, I have, myself, more than likely, at least thought it about someone else.  Secondly, I'm not sharing these thoughts out of offense or to defend myself or to make anybody feel guilty.  That's the last thing I'm interested in.  I really just want people to at least know what not to say to the parents of a child with special needs.
First.  Vocabulary doesn't equal communication.  Just because a child can say or mimic some words does not mean he's at age level for his communication.  Levi has been taking off on the vocab side of things.  He's able to tell us when he wants a drink and when he wants to go play outside as well as several other 'I want' and 'I go' phrases.  Thank You, Jesus!!  It's exciting!  But, at two and a half, he still doesn't comprehend "come here" or "where's the dog" or "get the block" or most commands for that matter.  He still can't tell me when he's in pain or doesn't feel well.  "I want" and "I go" are a huge accomplishment, but it can only get him so far.  So, please don't tell me that he's at the same level for language (or anything else for that matter) as other kids his age.  It doesn't make me feel better.  It makes me feel like you think I'm blowing things out of proportion.  The truth is, I'm not.  Many professional language/development tests and experts have confirmed this point.
Here's another example of what not to say:  "He doesn't seem too far behind developmentally.  He is really big for his age,though, isn't he?"  No.  He's average sized for his age.  What you're seeing is a two and a half year old acting like a twenty month old.  Yes, he seems big for the way he's acting, but it's not because he's above average in size, it's because he's below average in development.  He's supposed to be that size; it's just that he's supposed to behave that size too.  When you know a child is developmentally delayed and you openly associate that with his size and not his development, to the parent, you've just invalidated the struggles they and their child have gone through.  When people say this to me, I feel like they're telling me, "No, Keira, you don't know what you're talking about.  He's just fine."
Which leads to another one:  "He'll be fine. You know that, right?  He'll be just fine."  No.  I don't know that.    He could be fine, but he might not.  In fact, there's a chance that he could be really not fine.  The thing is, there are plenty of people out there who's kids are not fine.  There are children who are completely mentally handicapped, kids who die of cancer, and kids who will need constant care for the rest of their lives.  God does not love me or Levi more than He loves them.  If He allows it for one child, I cannot say that He won't allow it for mine.  I hope against hope that He completely heals my son.  I have faith that He can and will.  But, no.  I don't know that He will.  Faith and knowing are two different things. I mean, seriously, kids aren't handicapped or terminally ill because of their parents' lack of faith.
Which brings me to:  "Well, you just need to rebuke it," or "I just wouldn't accept it," or "You just plead the name of Jesus over him..."  If anybody else tells me I just need to plead the name of Jesus over him, I might just go crazy.  As though I'm not already doing that every single day.  Say one of those things to me and you make me feel like you think I'm so stupid that I don't pray for my son or that I'm completely lacking the faith that I need for my son to be healed.  Don't get me wrong.  I want you to plead the name of Jesus over my son.  PLEASE pray for him.  But, the fact is that so far rebuking it, rejecting it and pleading Jesus' name hasn't caused it to go away yet, and it might not ever go away. In fact, there's a medical chance that it could get worse - way worse.
Some people might take that last statement as a lack of faith on my part.  But, let me tell you something I've learned about faith through all of this.   It's one thing to believe that God can heal my child and to hope that He will. It's a whole other issue to know that instead, God could allow it to get worse and He would be just and glorified in doing so.  You see, His ways are not my ways and His thoughts are high above my thoughts.  If His plan doesn't involve Levi's healing from epilepsy and developmental delay, I have to have the faith to believe that that's the better plan.  It takes so much more faith to want God to have His way, even if it means things get worse, than it does to believe that He can heal my son just because I said "in Jesus' name".  Trust me. I've prayed Jesus' name over people and seen them healed.  This takes way more faith.
  So, there you go.  I have officially vented.   If I was too harsh, I'm sorry.  I've actually edited this post a lot because I don't want to upset anybody.  But, people need to know that we have to be careful.   Alot of the time that people have said these things to me they were trying to be encouraging, but they ended up invalidating or minimizing the situation I'm in.  And that's why I have to share this post.   I haven't written it out of frustration with a person or people.  I've written this out of frustration with feeling like nobody really understands, which, even in the midst of many great friends, can be a very lonely place.

One Year and Some Venting

Today marks one year since we discovered Levi was having seizures so I figured I should write something.  I want to write an overview of the past year, but I think I'll do that in a couple of days.  I kind of need to vent some stress and writing here seems to help:
  Today has been a fairly good day, but an unusual one as far as schedule goes, so Levi's had the chance to be extra.... well.... Levi-y.  We've been outside for much of the day, which is nice, but we've been with friends, which is also nice except that outside and Levi and friends don't mesh well unless he's strapped down, which for obvious reasons doesn't work for long.  Levi wants to run free when we're outside and doesn't understand that staying close to Mom and Dad keeps him safe. I'm telling you, this kid has absolutely no comprehension of boundaries.  If you take your eyes off of him for thirty seconds, he's either in the neighbors yard on his way out of town or he's trying to play with the fire. So, if we're outside, and we're letting him play, we have to follow him everywhere.  This doesn't work well if we want to hang out with our friends.
  If we want to spend time with our friends outside, we have two options.  Our first option is to hold Levi while he CONSTANTLY tries to break free, which is very difficult with a two-and-a-half-year-old-sized-body.  Of course, this method is painful to the back and also includes a frustrated Levi crying in the ear of the parent because he just wants to get down and play.  This makes it very difficult for said parent to participate in any kind of conversation with another adult.  The second option, which is our usual choice, is that we take turns chasing and holding.  I'll chase while Daddy talks to friends and then Daddy will chase while I talk to friends.  Then we'll try to hold him with us so we can all talk. But, thirty to forty-five minutes of that gets to be exhausting and our endeavor to have quality time with friends just seems pointless.  It's really frustrating.  We're frequently asked, "What's wrong with Levi?"  "Is he tired?",  "Is he hungry?".  No.  This is Levi.  This is a little glimpse of what our life looks like. It is like this LITERALLY every time we spend time with people, especially outdoors.  There's not something wrong.  This is how he is.
Of course, the last thing I want is for anybody to feel bad for asking us questions like that.  There's no way anybody could know what it's like unless they lived it on a daily basis.  So, I'm not frustrated, or hurt, or upset in anyway with anyone.  I'm just tired, especially after today, and needed to vent a little.  Thanks for listening.