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.



Read This  What we experienced while putting our cat to sleep today

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]



  • Sila says:

    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 me, I barely ever get to wear my $50 footed pajams in winter because the seams are painful to my toes. My poor boyfriend has to constantly rub my toes for me and get the seams off of them, cover me up in my weighted blanket, help me brush, etc. Sometimes it just isn't enough and I'd rather go cold than deal with it.

    I agree with what someone said about looking into underarmour. They also make weighted/pressure vests which can help too. Also a note, shirts with decals or designs printed onto the front can irritate from the inside too. The way the material reacts to the decal makes it feel uneven. It's a bit hard to explain I guess. Try rubbing your hand along the inside of the shirts with a decal on them, you'll see what I mean sorta.

    Personally I wear one jacket all the time, it's a purple clouded tigger hoodie that i've worn since middle school. I'm 20 yrs old now and I still fit it. There are days where I can't stand any shirts under it, so I'll wear only the jacket.

    Sorry it's kind of a long comment, I have trouble knowing when to 'shut up' ๐Ÿ™‚

    take care and hang in there. -hug-

  • Alana says:

    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 sweep AND mop the kitchen floor. egads! Seventeen going on three. This too shall pass.

  • suz says:

    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 he is doing ot with at least one item of clothing on then build it back up .

  • Julia says:

    ๐Ÿ™ 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?

  • Barefoot Liz says:

    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. ๐Ÿ™
    My recent post OMG! Surgery has been moved up to October 18th!

  • Tracy says:

    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) and let the OT know what she needs to work on with him that day. Hopefully you have some good therapists that will understand and work with you. Also, I heard you trying to offer a reward (hat) or a choice (which shirt). At that point the meltdown supersedes the ability to choose. Try one time saying "IF you put on the shirt you will get (Whatever motivates him, food, toy, object, etc)" and make sure he can visually see whatever it is. To get Zach to calm down in the car (because he was upset we had gone a different direction), I redirected with "Zach….Zach (Make sure they can hear over the screaming), if you quiet down, I will let you watch Alladin (his favorite movie at that time) when we get home." IF he continued, I didn't try again and just bared it until I got home. Again, these are just suggestions and if they don't work, they don't work and you trust your gut NO MATTER WHAT because you know your boy better than me or anyone else.

  • Tracy says:

    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. But I started going a different way each time. Wether it was to the store, or back home, to the school, whatever. The only routine I allowed him to have was his bed time routine. Even now I catch him doing something the same, like today he got home from school and immediatly took off his clothes (and put more comfortable clothes on). I said "Zach, you need to remember to check your schedule. Today you have an appointment, so you need to get dressed again. You cant always undress when you get home, especially when we have things to do.:" However, when he was little, my gosh I had to hear him scream. Where do you draw the line? Is it a normal fit or is it an autie fit or is it both? It is so hard to tell. You can only do what your gut tells you and this you have done. I just want to tell you it WILL get better. By the time zach was 8, he stopped screaming. He also spoke his first full meaningful sentence at 8, so I am sure that is not a coincedence. Once he could tell me what was wrong, we had no more meltdowns. Don't get me wrong, he still throws a "fit" once in a blue moon, but it is usually because he cannot express something verbally. I just want to tell you you are doing AWESOME. It is so hard not to break down and throw a fit yourself (and sometimes that is exactly what you have to do!). You will look back on this video some day and go "WOW, is that even the same kid?". Mark my words ๐Ÿ™‚

  • Israa says:

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

  • Jeanette says:

    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 too. again thanks for the realism of your blog and the honesty.
    My recent post Tired

  • Forgotten says:

    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 trying to post about the struggles and triumphs that we face each day, too. Thanks for the inspiration. Hug that sweet boy a few extra times for me. I'm so sorry that he was having a hard time.
    My recent post I can't do this…

  • Toni Smith says:

    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 ago. So there was no therapy for him. It was trial and error. Hugs to you both.