Taking a Toll

I’m very aware that I’m not the only one going through this, but I’m only speaking about my experience in this post. This is not meant to be taken as a blanket statement.

As a special needs parent, I have had to make many sacrifices over the past 10 or 11 years. I say this, not as a martyr, but as a means with which to make my point. I’ve given up my career and most of my possessions, as well as my financial security.

All of these and more were given up willingly and without much thought. If I were presented with a chance to go back and change things, I would give them up all over again.

However, there is one area that is very difficult to cope with and that’s the loss of friends and family. By loss, I’m referring to the connection we once had and damage occurring to relationships due in part to misunderstanding our actions.

Luckily, for the Lost and Tired family, we have mostly overcome this, however, it wasn’t always this way and it most certainly wasn’t easy.

In my experience, when you become a special needs parent, your whole world changes.

Things that I used to enjoy doing, like, hanging out with friends or get-togethers with family, began taking a back burner. This occurred not because I suddenly had no desire to spend time with them but rather because my priorities had to shift.

Now, despite how many people took this shift in priorities personally,  this had nothing to do with them and it most certainly wasn’t personal.

What happened was that as my wife and I became more in tune with our Autistic children (which was really just Gavin at that point in time), we realized that despite our desire to do something or go somewhere, our kids simply couldn’t handle it most of the time. We understood that it wasn’t fair to put them in an overwhelming situation if it could simply be avoided.

Aside from doing what was best for the boys, there is also an element of self-preservation. We could keep dealing with the fallout from these overwhelming situations.

In a nutshell, we had to put our kids and their unique needs before our personal wants and needs. Trust me, if we could get away for a little bit and spend time with family or friends….we would.

Over time, people just lost interest or decided our lives were to complicated for them. Saddly, in some cases, we had to walk away ourselves in order to do what was best for our family.

Unfortunately, for many years, people didn’t understand.  As I said previously, some people even took it personally, despite our many attempts to explain. In my case, I lost most of my friends and my relationship with my siblings suffered as well.

Everyone said that they understood, but I know they really didn’t and honestly, how could they. We spent so much time and energy hiding our struggles, no one really ever saw what we were experiencing.

For the most part, we were very lucky. Most of our family really tried to understand. However, behind the understanding smiles, grew misunderstanding and even resentment in some cases.

Some people actually thought that we were using our situation to get out of going somewhere or doing something. We have also been accused of using our situation to our advantage by people we made the mistake of trusting and letting into our lives.

No matter what we did to help people understand, nothing seemed to work.

Eventually, after more openly sharing our story on this blog and them reading the thousands of comments, they began to finally understand.

We now enjoy a stable and much more healthy relationship with our family, at least most of them.
I want people to hopefully, understand that they are not alone in this struggle. I would also like to think that perhaps, someone may read this and better understand what is going on with a friend or family member.
The last thing I wanted to do was cut people out of our lives. Unfortunately, in some cases it’s unavoidable. However, I want people to know that there is still hope when it comes to this struggle. Things have improved in this area for us and I never thought it would.

We haven’t compromised anything. We have the same issues with the boys and large gatherings, however, most people are much more understanding and I’m so incredibly grateful for that.

Having said all of the above, I was wondering how many of you have experienced something similar? What, if anything have you been able to do to help resolve these misunderstandings.

Have you ever had to make the painful decision to walk away from some relationships because of this lack of understanding?

I’m hoping we can all learn something from each other here.

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Rob Gorski
Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate
Rob Gorski

Rob Gorski

Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate

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