Excluding those that can’t

      5 Comments on Excluding those that can’t

One of the more difficult tasks I have as a special needs parent is having to treat my kids differently. I hate having to treat one of my different than another. 

This is however,  one of those unavoidable things I have to do as a parent to 3 very special little boys.

Part of what is so difficult about this inevitable situation when dealing with 3 boys,  in different places of the Autism Spectrum,  is having to exclude someone from something.  Feelings are almost always a causality.  

The Lost and Tired family has had to deal with this for many years. Despite those many years of having to do this,  it never gets easier or feels any better.  In fact,  as the kids get older,  they become more aware of being treated differently, and thus making things more complicated.



Why would we ever treat our kids differently?

That’s a good question with a very simple answer.  That simple answer is, that each of my kids are different and they have different thresholds of stimulation and stress.  Gavin is a really good example of this. 

For example,  I recently took Elliott to Chuck E. Cheeses. This is something that Gavin in wants to do in the worst way.  The problem is that Gavin could never handle it.  Gavin is the kind of kid that can’t go to the airport because he freaks out when the buzzer goes off at the baggage claim. 

Imagine Gavin at Chuck E. Cheeses,  with all the bells and screaming kids.  It’s an absolute sensory nightmare.  While he would want to go,  it would result in complete and utter overstimulation.  That overstimulation will lead to massive meltdowns,  if not there, shortly after and likely for days.

Elliott,  one the other hand seems to handle these situations differently.  There doesn’t appear to be much side effect in Elliott’s case.  So should Elliott miss out on this experience,  simply because Gavin can’t handle it?  The answer is complicated,  but simply put,  no,  he shouldn’t have to miss out on things because his brother can’t handle it.

Where things really get difficult is holidays and birthdays. 

The reality is that Gavin can’t handle any of these situations.  We have to do what’s best for Gavin and yet allow those that can, to experience things like this.

This is not easy…at all.

We have to take many things into account when deciding what we do in these situations.

Another example is this Christmas with Gavin.  The doctors have strongly suggested we avoid any and all holiday celebration. These types of events will cause Gavin to further decompensate. Clearly, avoiding these situations is in Gavin’s best interest.

With that said,  what about the needs of those that could enjoy the holiday celebration?  Should we all stay back so we can be together?  Should we divide and conquer,  meaning,  one of us stay back with Gavin and the other take Elliott and Emmett to visit family? 

While we have to protect Gavin from overstimulation,  we also have the responsibility to the other boys to ensure that they get the life experiences that they can handle?  My boys need that social interaction and I think it’s important that they get a chance to have as normal a life as possible.

As I said previously,  I really hate this part of special needs parenting.  I have to decide whether it’s the needs of the many over the needs of the few,  or the other way around. 

In truth,  my heart breaks for Gavin because he needs to miss so many things in order to survive.  That may sound dramatic but it really isn’t.  Not only is Gavin dealing with Autism,  but also schizoaffective disorder.  Kids with schizo-type disorders are extremely rare.  Kids like Gavin really need to limit their exposure to the situations mentioned above and others like them. 

It’s not easy to find a balance or some type of equal librium because,  regardless of what we decide,  someone is going to be upset.  Feelings are going to be hurt and people will experience disappointment. 

I also understand the benefits of us all staying together for the holidays.  However,  at the same time,  restricting the entire family because on one person,  isn’t necessarily fair either. 

I often wonder why I was picked for this job.  It would seem that there has to be some one better suited for this out there somewhere. 

For better or worse,  these are the cards the Lost and Tired family as been dealt.  All we can do is what feels right at the time.  We will make mistakes and look back wondering what the hell we were thinking. However,  we do the very best we can to give our kids the very best life possible.

Who knows,  maybe at some point,  these decisions will become easier and the right answers more apparent.  Until then we will continue to feel our way through the dark,  while ensuring,  no one gets left behind. 

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • Judith says:

    It's so comforting to read of others' experiences in this area. I have 3 boys on the spectrum, with OCD's and other conditions. I have learn't to live a life where we rarely do anything together as it's almost impossible for 3 boys to all cope at once in exactly the same situation. The most difficult area I'm going through at the moment is trying to organize chore charts. Although the boys are 16,14 and 12 I have all but avoided pushing chores as I don't think I can even begin to describe the complexity (no exaggeration) of trying to find chores that will suit instead of sending them to the brink of wanting to kill themselves rather than have to cope in a world like this. The youngest and oldest are germ obsessed….the fear of picking up germs that may kill themselves or others is crippling for kids like this. The middle boy does not have a germ obsession with his OCD's…consequently I lean on him to do nearly all the chores and he resents it so much. Finding the balance truly is a challenge in itself!!

  • Laurie says:

    Even with one 'so-called' typical kiddo and one on the spectrum, we have discovered this works both ways. For example, we just went to an awesome dog-training class this morning that was set up specifically for children with disabilities. Our active, dog-loving NT son had to sit and watch. The fact that he is diability-free did not make the task any less challenging for him–really–and it was hard for me to watch him knowing he would love to be participating–bottom line for me is that it is never easy to omit any child from an activity, but that is part of life on and off the spectrum; living and learning and making situations the best we can with what we have…doesn't make it easier for us though! 🙂
    My recent post Entry Fifty-Nine: Living Parallel Lives

  • I feel for you! We've got a pack of special kids too, each with their own limitations and needs. Trying to meet each one's needs without trampling on everyone else is exhausting, but it's reality. It's what we have to do, so we do it and trust that somehow it will all work out. Good luck, from one special mom to another!

  • We try to celebrate our kids differences and do something special with each of them by themselves that they like. If you have to separate for the holidays have you thought about recording it? He would get to see everything but it would be on tv and easier to process since it would only be coming from one directioon insteed of all around him; he would also be able to control the volume or mute if needed.