And away we go…

So welcome to my first blog. Who am I? I am K and B’s Mom. What is so special about K and B? Well all children are special in their own right, but mine have something extra…a disability. B has ADHD, he is 13. K is 17. He has Down Syndrome, Autism and Epilepsy. I will be blogging about the everyday trials and tribulations (and rewards and successes!) of raising my boys.

Let me tell you a little bit about my boys!

B is an active, outgoing teenager. He loves video games and plans on being a video game developer one day. Sometimes he has a hard time concentrating on his tasks, but he has become much better at is as he was put on medication. I know some parents are hesitant about doing that, but it does make a difference! Sure, sometimes his mind still wanders and he speaks so quickly you can’t understand him, but his grades and behaviour are much better. He sees a therapist every couple of months. Some kids grow out of ADHD. Hey, a Mom can hope, right?

K will never grow out of what he has. He is on a waiting list right now for permanent care because I just can’t handle him anymore. He has become physically abusive towards me. I have had to take a leave from work due to stress. He is non verbal. He has never ushered a single word in his life. He babbles a lot and it sounds sometimes like he says “Mama” or “Dada” but he doesn’t associate it with us, or call us that directly. He “moos”, we call it that because, well, that’s what it sounds like! K is also incontinent, which means he is always in diapers. Changing a 17 year old’s bum is no fun, let me tell ya! Alot of his behaviour has to do with his Autism, but we had to wait 14 years for that diagnosis. That’s a long time trying to explain to the professionals that he is not just severely developmentally delayed, that there is something else going on. He had his first seizure when he was 14 too. He hit puberty and all hell broke loose! After having to sedate him for an MRI we got the Epilepsy diagnosis. But he is on meds to control those, thankfully. There is nothing more terrifying then watching your child convulse and there is nothing you can do about it. He can walk, but we have to use a wheelchair if we take him anywhere. Too often he has planted himself on the ground and it is next to impossible to get him back up if he doesn’t want too!

Sounds like a lot to handle, doesn’t it? But I do have help!

Thankfully I have my husband and a wonderful, and thankfully healthy, 19 year old son (S) who both take some of the burden off of me when they get home. K behaves himself for them because he can’t push them around. He is also in school full time until he is 21 and I get a week of respite care every month. I really look forward to that week because I get to shut the eyes in the back of my head for awhile. It’s a break for him too, I’m sure.

So as you can imagine, I have my hands full. But it can be so rewarding sometimes. And that is what I want to share on my blogs. The little things that make all the hard work worthwhile.

For now, take care!

P.

 

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2 thoughts on “And away we go…

  1. Yay, a blog!!
    It’s so funny that you mention using a wheelchair with K- I used to support a woman with DS and autism in a group home, and her parents had instituted the same thing for the exact same reason with her.
    I hope you find a place for him to live soon, it’s much easier to care for someone when you have time to care for yourself, too!

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