Ms. T, Sign Language, and Absolute Quiet

I have learned many things over the years as the mother of David. I have learned that what I once considered a "normal" and basically uneventful milestone for some kids, is a reason for celebration, possibly a party, and definitely gratitude for others. I have learned that being your child's voice, neither makes you liked nor listened to at times, by people that should, but it can make you feared if you take the job seriously. I have also learned that sometimes words are overrated and that you can become fluent in your child's way of conversing, even if it's not through vocalization. I think though, the most important thing I have learned is that no matter how old he gets, there are still literally thousands of things I still have yet to learn and things that even at this point, I have never even thought about. 

This was brought home to me not too long ago when I was having a conversation with his school para, Ms. T. Now this para is a one in a million. She has only been with David for about two years, but she is very intuned to him and can second guess what his needs are before he even knows what his needs are. She and his teacher Ms. P, are very determined that in the year David has left in school, that he is going to learn as much as he can and take away from school all the skills and life lessons he can in order for him to have the best future and the best possible life after high school. Now you may understand why I say we have scored when it comes to paras! 

One day, Ms. T. was telling me about all the new sign language that David is learning and that she needs to show me so that David and I can converse more easily. Through her ability to get the craziest things from him, and his brain being willing to receive new information from her, together they have hit a sweet spot and he is learning so much. Through sign language or his version of sign language, since with his cerebral palsy he has some issue with some of the signs, David is a lot less frustrated because he is being understood and he is feeling much more independent being able to instigate a conversation, need or want. It is like opening a door for him that has been shut for the last 20 years. It's really rather miraculous if you think about it. 

While we were talking about sign language, Ms. T. went on to talk about how she was also teaching him cues to be quiet at certain times. David? Quiet? So a little back information, David has never been a particularly quiet child. I think it kind of goes with his disabilities and also that because he is non-verbal, his vocalization is important to him. He has always been loud and excited when he sees people, when there is music playing or when he is in a new place. He also knows how to read a room and the acoustics in a room. If he knows he is in a place where sound will carry, such as a gym or say.....a church...during Mass, he is going to test those acoustics to the fullest. He has also always been pretty vocal on the school bus, but I had noticed of late, that I couldn't hear him on the bus when it was coming down the street like I used to be able to. So David...learning to be quiet. Cool!

According to Ms. T, she is teaching him to be absolutely quiet at certain times and in certain places (like the school bus) by using cues from her. Bonus.....he is listening and paying attention. He is actually being quiet. Then she told me why she was teaching him this, and I couldn't decide whether my heart would burst with gratitude, or if I was just in shock. 

Ms. T. is teaching David to be quiet on cue, in case there is ever a school shooter. 

If that last sentence stuns you, then leaves you silent, and then gives you a total sense of, yes.....that is hugely important, then you will know how I felt when she said it. It is something so important in the world we live in, but something that I am not sure I had ever really thought about. It was one of those things I know I should have thought about, but sometimes I think my brain will simply not allow those kinds of thoughts in. It was definitely a lesson in preventative measures and David's safety. 

I won't lie, I have had a couple of horrific nightmares since Ms. T. and I had that conversation, but in my waking hours, when common sense overrides the nonsensical aura's left behind from the nightmares, I realize that Ms. T. is giving David a dose of self-preservation, a little bit of independence and she is also opening him up to many more opportunities in the world where quiet is necessary.  Did I mention, that he is actually listening and paying attention to Ms. T.'s instructions and cues and he is being....quiet?!

Sometimes in this life, we just click with people, and because of the bond we form, we can achieve things we never knew were possible or that we even wanted to. That seems to be the case with Ms. T. and David. Working with David, she seems to connect with him in a way that he both understands and he is willing to listen to. Because of this, she is in effect, changing both David's world and his life.....and she is also teaching his mother a few lessons along the way. 

To say that I am grateful to Ms. T and his wonderful teacher Ms. P, would be an understatement. Ladies.....if you happen to read this....thank you from both David and I.

Until next time.....may you challenge yourself, respect yourself and if you have a great teacher and/or para.....give them a really big hug. 

The First Twenty Years

I have had people ask me if David graduates this year. He does not. He has another year, as he can go to school until he is 21. This made me realize though, that it has been a looooooong time since last I blogged here. I guess you can think about it this way.....no news is good news.....or at least......not bad news. 

If my eyes didn't deceive me, it was 2019 when last I posted here. A lot and yet really nothing has happened since then. David has had a couple of hospital stays, one was for a 105-degree fever. Yeah, that was fun....not! And scary as heck. Then there was a hospital stay for a bladder blockage (possibly a kidney stone), but it all took care of itself. For the most part, though, his health has remained good and he was the only kid in the school that was allowed to go all day, this entire year, as his room is pretty much quarantined in the best of times and his socialization was limited to about three people. He has loved every second of it, as during the lockdown last year for the last nine weeks, he did not have a good time being at home all that time. Mom just isn't as thrilling as she would like to think she is and I got a lot of him pushing me away and pointing towards the door. He missed his teacher, his para, and the other kids. Hopefully next school year, he can have a lot more peer socialization. 

Yes, David is growing up and he is 20 right now. Some days I can't believe it. He is no longer my little boy. He is now a man, and if I ever forget that, all I have to do is look at the mustache and goatee that his face just naturally grows. I think he has more facial hair than any of his brothers....and he likes it. Still though, when I see him laughing at Spongebob or giving me his "cute face", it lets me know that my special little boy is still in there. He just has facial hair now.

David has been very blessed school-wise, as he has ended up with a very kind and loving teacher and an amazing para. I think the school finally realized that these special kids need to have the same para as much as possible for so many reasons. His para Miss Tony is a keeper and when his school years are through, I don't know which one is going to be more lost, David or Miss Tony. She gets so much out of David and he adores her. 

With David growing up and transitioning from a child to an adult, this process has not been without struggles. Everything we knew before he turned 19, changed directly after. He had to change where he gets extended services and who his advocate is, I had to become his legal conservator (not just his mom), he has had to go on medicare for insurance (which was a nightmare to figure out), and now everything he does is in the adult world. No longer is he considered a child. It is a mixed blessing as I am beyond grateful that the tiny little guy that they didn't think would live to make it out of the NICU 20 years ago, is still here, going strong and proving to the world that for him there are no ceilings. On the other hand though, sometimes I look at pictures of him when he was little and I miss my baby. I guess it is just a normal mom thing. 

David still gets his botox injections for his muscles every three months and he does fairly well with his mobility. Unfortunately, when he had the spinal surgery to straighten his spine, he did lose some flexibility due to the rod in his back and he took a few steps back in his ability to walk with his walker. He has done well though, with trying to catch up. The bottom line unfortunately is, there are just some things he used to do, that he will never be able to do again. We deal with it and go on. 

School is almost out and soon we will be in summer. This year, David has put on more weight and gained some strength. I decided to change up his diet and it has worked very well for him. It is my hope that with this new weight gain and strength, that he will be able to enjoy the pool more this year. The last couple of years, because of his low weight, if it wasn't really hot outside, if he got in the pool, it would drop his blood pressure and give him an almost hypothermic reaction. Then it would take a lot to get his body temperature back up. Fingers crossed that this year we don't have this issue. 

It is so hard to believe, that this year David will be 21 and that next school year he will be graduating from high school. He has been in this school district since he was 3 years old. To not have him there after next year will be so surreal. Even more surreal though is that he will be a high school graduate. I remember when he was about 4 years old, and I was at an IEP for David. His teachers and extended staff were all present and something was brought up about when he would be graduating. I remember his speech teacher Mickey Mason, tearing up and saying, "I can't wait to see him go across that stage. I will be the one cheering the loudest." I have no doubt that she will be too. 

David has been through a great deal in his first 20 years. He started out beyond critical, survived, lost his dad, lost his grandma, suffered through years of seizures, has had numerous hospital stays, lots of surgeries, has been septic on a couple of occasions and nearly died, has gone to school, made friends, and taught everyone who knows him, unconditional love, kindness, giving and the knowledge that not all disabilities are equal and that disabilities are not roadblocks in life, but merely speed bumps. 

It has been an exciting 20 years and I can't wait to see what the next 20 holds for him. Who knows what medical breakthroughs there will be and just how many more lives he will touch? What I do know though, is that David has never quit fighting a day in his life and whatever the future holds, he will be ready and in his own small way, he is gonna change the world. Heck....he already has. 

Until next time, take care, be kind and never give up. If David can do it....so can you!