Tuesday, April 1, 2014


I'm not sure where to even begin with this post. I have wanted to talk about a lot lately but I am just simply too tired to get into a very heartfelt post. However, it is the first day of Autism Awareness month so I am going to talk tonight.

Trenton has been having bad tantrums and meltdowns lately. Most people will think that it is due to lack of sleep. Trust me when I say, that is not the case. Unfortunately, it is just a part of autism. On some days it is two steps forward and then before you know it, it is five steps backward.

When I try to describe Trenton's meltdowns to people I often get a lost confused look. I am often asked if he has these during school or therapy.  The answer is, he rarely does. However let me remind you that this month marks two years that Trenton has been in therapy. TWO YEARS! For the first several months after starting therapy, Trenton had bad meltdowns during his therapy sessions. I am very glad to say that one of the big things we have accomplished since therapy is the ability for him to keep his composure during structure time. Trenton has some amazing therapist that fought through some very difficult times with him. Now, thanks to their hard work, he can handle himself during structure time. Structure time is therapy and school. Trenton, like the majority of children with autism, thrive from structure! Trenton has no idea what to do with himself without someone right there doing one on one play 24/7.

On the flip side, it is almost impossible to keep structure every minute of the day when we are home. How can you keep structure every minute when you have supper to make, clothes to clean and dry, a house to keep clean,  two boys in diapers still, phone calls about issues to doctors and therapist, and all the other countless daily issues that arise? IT. IS. IMPOSSIBLE! Therefore, we have meltdowns. Meltdowns because he needs constant one on one floor time play or he gets out of control fast. His brain does not simply let me him play like a normal kid his age can.

Another reason why we have more meltdowns at home is because he keeps his composure during structure time and when he comes home he has to release. He has taken in all the hundreds of voices around him that the normal person does not even hear. He has had sensory overload so he releases at home. He gets it out of his system where he feels the most comfortable.

Trenton's sensory modulation processing disorder leads to a lot of meltdowns. At times Trenton needs weight on his body....or he may need his headphones.....or he may need deep pressure on his body....or he may need to bounce or jump on his trampoline. If he does not meet these needs, he can have a meltdown.

In the evening time and during the night when he is up, Trenton has the ant/fire feeling in his legs quite often. (It was describe that to the neurotypical person that this feels like thousands of ants crawling on your legs while your legs are on fire.) Sadly, there is nothing I can do when this feeling comes upon him. When I try to help, I often get kicked, hit, and my hair pulled. I try to add pressure and weight on his legs during these episodes but it is very difficult. He is inconsolable and uncontrollable. On that account, there is nothing that I can do other than cry and pray. These meltdowns from the ant/fire feeling last 1-1 1/2 hours when they occur in the middle of the night. I can tell his body is close to giving up the fight when he lays stills and just screams bloody murder. At this point, I lay my body on top of his and talk to him. Sometimes I tell him how special he is..... Sometimes I tell him how brave he is...... Sometimes I tell him how much I love him..... Sometimes I sing the ABC song to him, etc.
 If it happens in the evening time, they generally last anywhere from 15 minutes to one hour. Tonight he had a short 15 minute one. I decided to video only a very short clip. The video that I have attached only gives a tiny and I mean a tiny glimpse to what his meltdowns are like.

On many occasions during his meltdowns, he will run full force into the wall, furniture, or anything that he can run into. This video just simply shows him crying and dropping to the ground, and getting back up. While you are watching the video, just imagine if this was your child doing this for over an hour each night. All the while you are on NO sleep or maybe a one hour nap in the last 24 hours. To top it off, you have done this almost every night for the last 3 1/2 years!! Just think what it must be like to be Trenton. What does it feel like to have thousands of ants crawling on you and you can't get the feeling to go away??? No wonder he has a meltdown. I would too!

Here is a very small example of what a hour plus meltdown is like.

If it is autism like this......no spanking will make him mind....no standing in the corner......nothing that a neurotypical kid can learn from...it just doesn't happen with autism.


  1. And there are still those that "don't get it" that think it is merely bad parenting!!!! This makes me sick to my stomach. No one can know what it is like to watch someone you love in that much pain daily!!!! (and I am really glad they don't) because the only way to really "know" is to live through that yourself. I would not wish this on anyone!!!!!!! There are no words.....just a grief like I have never known!!!

  2. A lot of what you have said above I can relate to.. the one to one play and the tendency to get destructive if no attention being given. I'm lucky though my son doesn't have the length of outburst but does have violent swings. It took 30 minutes tonight to mediate him into what turned into a 10 minute therapy session because he was emotionally charged over the summer holiday break from his therapist xxx