One of the things I think that many of us, as special needs parents, have in common, is our desire for understanding. We desire understanding for our children and even for ourselves. The life of a special needs family is complex by it’s very nature.
Speaking only for myself, I know that many times I don’t even understand the how’s and why’s. I want to help people have a better understanding of the struggles my children face daily. I want people to understand that when we can’t go somewhere or have to cancel at the last minute, there are very good reasons. I want family and friends to understand that we aren’t blowing them off and in reality, we would prefer to be there. However, the reality is that we can’t.
Challenging, overwhelming, exhausting (both physically and emotionally), time consuming and really all consuming, are just a few of the words or phrases that don’t seem to quite cut it. My hope is that through sharing my family’s struggle and triumphs, we can help to make the world more understanding and aware….one reader at a time. I’m not ashamed of my children’s behaviors anymore than they, themselves should be. It’s not their fault but that’s not to say it doesn’t still impact every aspect of our lives together.
I have lost track of how many times we have canceled plans at the last minute because something has come up. That something could be a meltdown, or simply an unwillingness to get dressed. The Lost and Tired family, has learned over time that this is just part of our lives and is outside of our control. Most of our family is very understanding now but sometimes I know they still don’t get it and honestly, it took awhile to get here.
My goal here is to help you better understand what, at least, my family goes through, every single time we have to go somewhere. My hope is that you can maybe relate this to someone in your life that may be in a similar situation. By viewing my family’s life, perhaps you can have a new appreciation for what families like mine may be experiencing. Life can be challenging enough without judgement and ridicule, brought on by a simple lack of understanding.
With that said, I’ll explain this video. Today was a speech and OT day for Emmett. Typically, he loves these appointments and can’t wait to go. However, getting dressed is a sensory nightmare for him. Sometimes, we can work through it but other, like today, we simply can’t. Emmett misses quite a few appointments as a result of the times we can’t work through it. I document this, once again, in the hopes of helping to promote a better understanding of, at least my family’s daily struggles. Very little ever comes easy for us and this is just one example of our struggles.
It should be noted that prior to actually deciding to film this, we did all the preparations, like, brushing and manipulating his joints and limbs. This is done to prep his body for the experience of wearing clothes. Sometimes this is successful and others it isn’t. We do our best to help him through these time but there comes a point where we need to draw the line. It gets to a point where it feels like torture to him and we are unwilling to go past that point. Maybe that’s wrong but we don’t have the heart to upset him so much that he vomits.
[youtube width=”720″ height=”480″]http://www.youtube.com/watch?v=Jl4DK25UprM[/youtube]