Saturday, March 22, 2014

Feeling Better but Meltdowns are coming back

Trenton is feeling better today! However, last evening was another moment where I can say I only survived through the grace of God and his strength. Trenton had a meltdown before he fell asleep. Right before he fell asleep he started shaking his legs non-stop and tried to talk to me. The only thing I could understand between the noises that he was making was "please".

Please!!! I know in my heart he thought he was telling me something and he  was saying please. He suffers so much every day living in a body that does not allow him to just simply fall asleep when he is so tired. Instead, his body...or brain I should say...puts him through living hell to fall asleep. As Carly explained it when she had these episodes that it felt like her body was on fire with thousands of ants crawling on it. I know Trenton had that episode last night and it makes me physically ill knowing my child suffers every day just living on this Earth.

I am often asked if I have a Facebook. When I reply, "No I am not on Facebook." I receive a look back like I am a freak of nature. To be straight forward with you, Facebook would only add fuel to my fire. The few times I have looked on my moms Facebook there is someone on there complaining about the littlest things in life. No I don't want to read about how someone burned their supper and their husband got mad at them. I don't want to hear about how you are mad at a coach because your child isn't the starting player. I don't want to read about how normal families get to enjoy weekend getaways, relaxing holiday family times, and how great marriages are in normal families and so forth. I know there are TONS of people who have it worse than me. But when you go on an average of two to three hours of broken sleep each night....when you are constantly trying to figure out what your nonverbal child wants before a tantrum starts....when you constantly try to stop your child from hitting himself in the head....when you are constantly having to advocate for your child because your find out more and more each day how the majority of this world has such little compassion for people with special needs.....when you try to teach someone over and over not to do something they shouldn't be but their brain doesn't allow them to understand or act like they understand.....when you live in the dark constantly because by the time mid afternoon to early evening has arrived he has taken in all of the light that his body can handle for the day.......when you watch your child pace back and forth for three plus hours every night because he can't control his body.....when it is a huge fight 75% of the time just to get him to sit on a toilet.....when you can't remember the last time you watched a TV show because researching for your child's needs is SO MUCH  MORE IMPORTANT THAN TV.....when you watch your child suffer each and every day and you feel so helpless at times because there is nothing you can do other than to watch him suffer you just don't want to be on Facebook!! I especially don't want to be on Facebook after I had a night like last night.

Instead of those happy moments others enjoy....autism families enjoy the tiniest of things. For example, Nana, Pops, and Mommy took the boys out this afternoon to Pizza Hut and they did well! Trenton did great and it helped tremendously that we had the place to ourselves!!!!!
On the way home, the boys enjoyed ice cream.

On another good note, Trenton spelled Nana last night and today!! His smile after he spelled Nana was PRICELESS!!!!!! He knew exactly what he did and he was proud of himself!


 Trenton wanted to wear his headphones today. It's been the first time in a long time he wanted to wear them. Andrew immediately wanted to wear Trenton's other pair. He has to be just like big brother!


2 comments:

  1. I'm so glad Trenton is feeling better! Being able to hug him the other day was such a special moment. I will continue to pray for better sleep and fewer meltdowns.

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  2. Boy, can I relate to all of that! I do spend too much time on Facebook, but reading about other people's vacations and minor issues and family fun times that seem so easy can just get extremely tough.

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