Can you understand?

      13 Comments on Can you understand?


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. 

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About Rob Gorski

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

  

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Toni Smith
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Toni Smith

I feel for you guys. Watching Emmett go through his meltdown has this strange surreal feeling to it; it mirrors my own son to a Tee. I think it would feel that way to you as well if I posted a video of Andrew having a meltdown. You would think "Yes! Exactly!" He has sensory issues with clothes too. It brought tears to my eyes and brought back memories when he would do that too but at the time we didn't know what was wrong. We were overwhelmed. We didn't even know the words "sensory issue" until just a year… Read more »

Forgotten
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Forgotten

Oh, angel. I just wanted to hug him up and hold him, too. I have been there so many times. One of my twins doesn't pay the slightest bit of attention to these types of things unless there is something on his clothes such as dripping something on his shirt or pants but his brother is my sensitive boy. My boys are both on the spectrum, but my Twin B who is more towards the Aspergers end is my sensitive child. He has many sensory issues, clothes, light, noise, and crowds just being a few of these. Maybe I'll start… Read more »

Jeanette
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awww. Times like that are so tough. thank you though for sharing these things and keeping it real – it helps to know others who are going through similar struggles. We really struggle with people "understanding" because we have two "normal" children as well. We can't treat them the same as our autistic son, discipline them the same, and sometimes unfortunately give them the attention they need because he demands so much. To all observing, it usually seems like I have this one really bad kid. so sorry that your son had to go through that, and for you guys… Read more »

Israa
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Israa

one of my kid has the same problem but with wearing pants and underwares , and the other with the shoes hats and socks.

Tracy
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Tracy

Hi I am a new comer to your site. I am glad I found it. My son is going to be 18 on Nov 4th. Watching this video was like watching Zach at that age. Most of the time his fits were over things we could not control, such as having to detour on the highway. Not going the same way was torture for him. It was torture for me. However as soon as I realized we were sticking to a routine for Zach, I changed it up. Maybe this was right, maybe this was wrong. There is no manual.… Read more »

Tracy
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Tracy

Oops forgot to say something. If you are missing appointments do to the clothing thing, take him as he is and make sure the therapists understand why. That is something they can work on with him-Speech can work on him telling you why he does not like the clothes or using his words better. OT can work on providing interventions to help a child appropriately respond to information coming through the senses. I know you said you do the brushing and everything before hand and it is hit or miss. When it is a miss, take him (pajamas and all)… Read more »

Barefoot Liz
Guest

Oh boy, does that bring back difficult memories. My heart goes out to you. My son is now 8 and mostly ok with clothes now but still screams about eating and washing his hair. 🙁
My recent post OMG! Surgery has been moved up to October 18th!

Julia
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Julia

🙁 Poor Emmett. Have you tried compression garments like Skins that athletes wear? Or a wetsuit? Some kids wear these under regular clothes because they provide deep pressure and the material is fairly soft. I agree with Tracy that you should be able to take Emmett to therapy in his PJs, although I can understand that you don't want to set a precedent where he thinks that's ok. Does Emmett have a sensory diet?

Rob Gorski
Admin

Hey Julia,

The problem wasn\’t the pj\’s. It was the no shirt/shoes/socks thing. It was way to cold for that.

I need to look into under armor. Great idea 😉

Julia
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Julia

I forgot you guys are going into winter!

suz
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suz

We've had times like this too. I could so see the same things in my son. Especially when your wife mentions the crash mat i think it was and he calms for just a second, then when you see the oh yeah i like that response then the realisation but i have to get dressed and the sheer desparation to go but just can't do it. I agree with the pp, if its possible go without clothes on, just to move him past that point of getting stuck in i can't do this. Backwards plan it if you can so… Read more »

Alana
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Alana

This vid is like a blast from the past. One of my three "spectrum kids" used to cry so much that he or she would vomit, but now I HONESTLY can't remember which one it was. Mine are teenagers now, nerdy as all get out and still aspies, but also happily playing games, taking piano lessons, volunteering at the library (my oldest is a whiz at finding lost books). Today's mini-melt down at our house was when I asked the 17 year old to mop the kitchen floor, and she did…without first sweeping it, because I DID NOT SAY to… Read more »

Sila
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Sila

I totally know how this feels, and I feel so bad for the little guy. I feel his pain. I have the same problem with clothing, often it's the seams that bother, or just the way the clothes fit. If it's too light (loose) then it brushes against my skin too much and it's uncomfortable. If it's too tight it feels like it's restricting movement and again is uncomfortable. I cant have any difference in texture or even-ness in my shoe-soles or socks, I end up curling my toes against it as I walk. Seams irritate the heck out of… Read more »