Feelings of guilt

We are getting ready to go to the beach for a couple of days.  The problem is that we can’t actually go to the beach.  SNC is in a wheelchair, and if you have dealt with one before, you know that wheelchairs and sand dunes don’t mix well.

This is a common problem we face and to be honest it weighs heavily on me.  I think I have mentioned before that we cannot go and do some things as an entire family.  Our choice is to split up while one parent stays at home, or we get respite care which is a problem (see previous post).

The guilt I feel runs on so many levels.  One one hand, I struggle with wanting to include SNC but I don’t know how much she will benefit from the activity.  Not only that, we never know when a meltdown will occur and we have to abandon the activity, or at least remove SNC from the situation so that the other children can maybe continue.

I feel guilt because if we do exclude SNC from an activity, she is conspicuously absent from any photos taken during an event.  Sure, I put on a smile for the camera with my other children, but it is for show.  Always in the back of my mind is the thought that we can’t be a normal, typical family able to laugh and have fun all together.

I feel guilt because my other children aren’t able to include SNC in a lot of their activities because of physical dis/inability.

I feel bad because there are things that I want to do with my other children, but I can’t because it is my turn to stay at home with SNC.  I wish I could with all of them together, but neither is an option at this point.

Back to the beach trip, at some point, the kids are going to want to get in the pool.  I’d love to get in and play with them, but I have to sit out with SNC, and even that can’t be long because of the chance of rapid sunburn due to sensitive skin.  The wife has some business to attend to while we are there, so it will be just the kids and me at the pool, in case you were wondering.

While I am grateful that my children get to learn compassion for someone with special needs and be comfortable around them, I also find it extremely unfair to them that they are unable to do some things just because of our family situation.

Respite Care – Are you kidding me???

Ok, so here goes a rant on the idea of “respite care.”

So, you have a special needs child who requires some amount of in-home nursing care.  The idea is that the nurse is supposed to come in and help with feeding, bathing, toileting, some light household cleaning, etc.  In some cases, the nurse(s) from the agency are supposed to be able to come in and stay in your home to help take care of the patient.

Now, before I go any further, I have to say that there have been a few nurses that have helped out who have been angels to come in and work with my child.  The vast majority, however, are, in my opinion, just doing what they can to get by.  So while the fact that they show up helps, you have to stay on them to make sure they are on time, not fudging their time-sheets, and taking care of all their responsibilities in the care plan.  The best nurses, fortunately for them, unfortunately for us, are the go-getters and are using their certification as a stepping stone to move on to their nursing degrees.  I can’t fault them for that, but it doesn’t help my situation any.

As part of nursing care, there is a concept called respite care.  This is where you are supposed to be able to leave your loved one/child in the care of an individual who is supposed to take on their care as if you were doing it.  It is done so that you can rest and recharge so that you can come back refreshed and able to handle the care longer.

The problem here is that the same people who you are having to supervise that they are doing the right thing are the same people that supposedly will come into your house, stay in your house, and watch over your loved one while you are gone.  I don’t know about you, but I don’t know that I can let someone I just met stay in my home with only my child, who can’t talk or walk.  I know the agency has insurance and does background checks, but to be honest, I can’t think of too many of the nurses we meet that I could trust based on their performance when I am watching.

So, respite, is having someone that you don’t know stay in your home with your child by themselves while you go out…and you are supposed to relax.  RIGHT!

Then you have these “seminars” to help you learn how to let go a little and take some time for yourself.  But yet the whole time you are at the seminar, you are thinking about what might be going wrong with your child under the care of some unknown (to me) person, alone in my home.  How does this help?

Unfortunately, under most plans, you can’t even take your child to a respite center like you can with an adult.  So, it is an all-or-nothing ordeal.  If I want to place my child in respite care, well, then, they have to now reside in the facility.

I just don’t understand how you can get rest and relaxation under these conditions.

This feels completely like a full-on catch-22 situation.  Damned if you do, and damned if you don’t.

Experiences from July 11

Yes, I know, my titles are the most creative and artistic.  I should probably win an award for them.

Yesterday, was another day of “fun.”  During most of the afternoon, I was able to listen to SNC’s (Special Needs Child) constant screaming.  It was not because of any pain, but just because it is fun to listen to the various magnitudes of screams.  After a few hours of trying to tune out the screams, I finally had a small break and screamed back hoping that maybe it would break the cycle of screams.  There is no reasoning to get it to stop.  Medication helps for a while, but it can only be given so often and in specific volumes.  The back-scream didn’t help; it made it worse.  I ended up putting SNC in bed to get control.  That did help…after a while.

There was a small break before supper time.  After diaper change, it was time to come to the table and eat one of my most favorite meals.  Unfortunately, it seems that SNC had other plans.  It seems that there are some times when SNC doesn’t want to eat and starts choking on the bites of food.  These are not huge bites of food as we have learned this lesson before.  Swallow studies have been done and found nothing remarkable.  SNC just does not want to chew the food and just swallows it directly.  Only a couple of times have we needed to call EMS for support, and only one time did we have to go to the hospital to be checked out.  Usually, it is just a bad coughing spell that sounds much worse than it is.  There is no enjoying a meal at the dinner table.  We are always on edge that something is going to happen.  With the ensuing drama, we usually cannot actually have a decent conversation during a meal because either SNC will scream because we are talking, we are so freakin’ tired from all the drama, or there has been so much noise that we just want quiet.

Man, it is good when we can have a decent meal without drama.  Those moments come few and far between.

For those of you just tuning in, I want to say for the record that I love my children dearly.  My purpose for this blog is to have an outlet for my feelings.  I am tired of holding everything in.

Introduction

Hi,

I am starting this blog to hopefully have an anonymous outlet for my feelings.  I am a Dad to a special needs child.  I don’t really know what will come out here; I just know I need to get some things off of my chest.

To begin, I will provide some background information, but nothing so specific that someone could identify me.  I don’t want to be identified.  I just want to talk.  I don’t care if anybody listens.

I am probably what is considered to be “mid life.”  Maybe part of my problem is that I am going through a mid-life crisis.  Who knows?  I live in the Eastern United States.  I have a decent job, an intact family, a sufficient place to live.

My special needs child is nearly a teenager.  My child is unable to walk or talk and pretty much relies on someone else for nearly everything.  This isn’t a new condition for us as part of this condition manifested itself at birth, without any warning.  There were things that happened later on that made the situation worse.

Up until recently, I have been able to hold in my thoughts and feelings, but now it is become more difficult to do so.  I had a breakdown, not like going to the hospital to be committed, but a “I can’t hold this in any longer and I have to let my feelings out.”

I have read the “Welcome to Holland!” story that gets passed around to people who are in this situation.  It used to give me comfort.  It now nearly makes me heave uncontrollably that I am so sick of it.  To me, now, it is just a reminder that things will never be as they were or as I planned them to be.  To be fair, I understand that the person who wrote the story means well.

My child has become increasingly more difficult to handle in various situations.  It is not a destructive difficulty, but it makes life very difficult.  Imagine having an 18-month-old trapped in a teenager’s body.  It is that type of difficulty.  There are times when things go smoothly, but when they go wrong, it is completely unexpected; and there is nothing you can do except endure it.

I have other children who are considered “typical.”  I have found it very unfair that we have to break away from things they are doing because my SNC (“Special Needs Child”) can no longer handle what is going on.  We have tried medications and various methods to handle the mood swings, but nothing seems to help…for any length of time.

There is progress for my SNC, being able to overcome some obstacles to even a short degree.  Day-to-day, it doesn’t look like much, but over the past several years, the progress can be seen.  It used to be that those shining moments would alleviate the pain, at least for a little while, and I could just keep going.  That is not to say that I am unhappy with the progress achieved.

The biggest problem comes day-to-day when my child will be in the bedroom and/or bed and constantly moan and wail.  Sometimes it escalates to full-on screams and screeches.  The sounds coming from my house sound an awful lot like you might think an insane asylum would sound in some horror movies.  This wears on a person more than you might think.

I know reading just this one post that it may not sound so bad, but several years have just been condensed into a 10-minute read.

I’ll post some more information later.  I probably should have been doing this all along.