Tuesday, September 17, 2013

Just Do It

When people see me in public it is easy to assume that everything is fine. Sometimes it is, other times not so much, but I was raised to be a lady and not get everyone to board my pity train. On those harder days it is hard to keep calm and smile, but it is possible. Today and yesterday were one of those harder days. 

I am just going to say it right out, Autism freaking sucks! It is a blessing at the same time though. One of those double edged swords that cut deep either way you slice it. Rewarding at times, helping me grow as a parent and fellow man (or woman to be politically correct). At times it's no big deal to have multiple children with disabilities. It is my norm and to use another cliché, it has gotten to be old hat. Other times, like this week, it is super hard, exhausting, and the emotional toll is indescribable. 

I have dealt with this severe autism for 13 years, I am tired. I haven't had more than 4 hours of sleep a night either in that Same amount of time. My youngest child is now 2 and I see the same behaviors in him as my oldest. So, yes, as I get asked all the time, he will be just like Seth. The good and the hard. Don't say to me now, "oh, you poor thing. I am sorry." Because, I am not. In a way, I get a do over. I know what works and what doesn't. I can help the issues in the early stages.

With my oldest, I am still learning. His stages are still new to me. Right now the strict routine we've had in play for the past decade seems to not be working any more. It has been suggested that before school he not be allowed to have anything that isn't school related. No television, iPad, DVDs, computer, so he doesn't feel like we are taking something away and school is the punishment making the transition from home o school easier. Sounds pretty simple right? Yeah, it's not. Maybe I am just lazy. He wakes up at 5am, 6, if I am lucky and has to be to school by 8. That is two hour of fighting him not to play with anything, because really, anything he does will feel like it is being taken away. Plus, I have three other children to get ready for school as well. And remember, two others also have their issues to work with.

 My one child that doesn't have a label has grown to be an amazing help. This boy sees something the others need help with and he is on it in the morning. It helps we have a listed schedule so each one can see what is next. We use a toke economy in our house and it is what has worked for the past 10 years. The kids bust their hides to get the list done, almost like a race, and look forward to that reward of down time before school on the iPad or what not. Maybe I should change it to loading them up with sweets and letting them burn it off at school, kidding.

Well, this no fun things during down time is dang near impossible. I am constantly reinforcing and redirecting. I am always doing two things at once. Stearing one kid away from this and helping another one do something else. I'm the only parent at home from 6am to 5pm. (Right now he's helping my son's football team and practice goes until 7:30pm) My husband works extremely hard to provide so I can help our children. He can't just come home to help me carry my teenager into school, and my husband is a type of person that has to do backbreaking type work. He just doesn't feel happy if he isn't getting dirty at work. Maybe his parents shouldn't have let him play in the sandpile when he was a kid. Joking again. But seriously, I am handling this on my own. I'm the one who get the multiple phone calls from my oldest child's teacher everyday, drag him out of the truck, kicking and screaming every morning. I help the kids do their homework, cook dinner, clean house, and set out the clothes for the next day and ready the schedule to start all over again by myself. 

So, this one more thing I am being asked to do now and not let my son have anything not school related is hard. Almost the straw to break my back. I don't know how other moms, especially ones with mulitble disabled children, do it. My hat is off to you. You are rock stars! 

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