September Update

It’s that time again. We are going to see Dr. Nemeh tomorrow on Kevin’s birthday! So it’s a good time for me to reflect back since our last visit and make note of changes and new “Kevin Shenanigans” we’ve seen in the last couple months.

The most recent Shenanigan is that Kevin began leaving the house to walk outside WITHOUT ME!. Yikes! So this is good and bad, right!? I love his independence, his determination, and giving him some freedom. But I also have to think of his safety. I’m not confident that he would not cross the street if he decided that he wanted to visit a neighbor. I also am not comfortable with him not being visible to me. We are fortunate to have very good neighbors that I know would look out for him if they saw him out without me. Luckily, when he began doing this I was aware of it each time. I tried to stay on the porch as long as I could, to give him his freedom. I told him he had to stay on the sidewalk and not walk too far down the block so that I could still see him. If he started to veer off, I would call his name and he would get back to where he needed to be. Sometimes he would test me and all I had to do was start to walk down the porch steps and he would quickly correct himself - which made me have an inside chuckle. Finally, it seemed he was getting too comfortable going out the door and I was worried I would miss him leaving. One time I was talking to my Aunt on the phone and he went in the kitchen, grabbed the garage door opener, and opened the back door and opened the garage door. After that episode we went to the store to buy one of those door alarms for each door in the house (thanks to my sister’s suggestion). It works like a charm - a very loud effective chime that is. I kinda cringe every time I open the door - which doesn’t look very welcoming to the person at the door. We explained to Kevin what the alarm meant and it stops him when he hears it. He comes to me and then indicates that he wants to go outside - which is fine - I just need to be out there with him. But this doesn’t necessarily mean he gets to go outside right then and there every time either, like one day he opened the door as I was getting lunch ready. He came to get me and I told him we could go out after lunch. A minute later I was looking for his applesauce cup that I thought I had put his supplements in but couldn’t find it. I found it on the floor next to the door - his way of asking one more time if we could go outside - another inside chuckle. Once I had to see exactly where it was that he wanted to go - so he let me follow behind him with a little distance between us - he walked around the whole block! Not something I’m totally comfortable with because we are still working on his walking - it makes me uneasy seeing him walk distance incorrectly. But on the other hand…maybe there is some improvement in his walking which is why he is choosing to walk the distance. My Mom, has seen Kevin pretty regularly every few weeks over the last several months and she kept commenting that his walking seemed to be improving slightly each time. So maybe it is - it’s hard for me to see it on a day to day basis. 

We received a new control unit for the Mollii Suit and I immediately noticed Kevin’s left hand physically moving during the activation. Really cool! Which makes me wonder if his old control unit was really working - but I won’t dwell on that. Not long after, one of Kevin’s Buddies was shaking hands with him. He always asks for Kevin’s left hand and he commented that he noticed an improvement in it. Again, it is sometimes difficult to express exactly what kind of change or improvement, because it is usually something very slight, but at the same time significant for Kevin. 

I love being able to comment that Kevin continues to make his sounds. I am so happy that he has not lost this ability, as he has in the past. We sometimes hear a new sound here and there. The last one was “me” - which probably goes along with his independent streak I mentioned above. 

One last story I have to add. I had the car packed for us to go visit my family. We left the house and started driving but we had to pick Jon up from work. When I passed the exit that we normally take on the way to Grandee & Pap’s house - Kevin immediately started making unhappy noise that I missed it. I thought this was pretty significant because it’s not like the exit said Middletown - this was an exit near our house, early into the trip. Never underestimate what Kevin understands and observes. Kevin’s cousins know this - when we arrived they knowingly asked if Kevin had been excited during the car ride. I heard a cute story, that this same cousin had randomly met a new friend and they were talking about their cousins. When she told her new friend about her cousin Kevin, she matter of factly said he doesn’t talk but excitedly told her new friend that he was beginning to make A LOT of sounds! This puts a BIG smile on my face.