Well obviously 2017 was a busy year since I managed to only write a few posts, and I feel a few big things are coming up, so I'll try to catch up a bit.
The Big Stuff
Let me start off by saying, that I am aware that I share a lot of personal things about Jacob and his life, and some people may think that is not ok. But I can assure you, he doesn't mind me telling you this because he tells me allll the time how he likes for me to tell people about him so that they better understand. He and I have many conversations about his disabilities for two reasons. One, he likes to better understand them and two, he likes the people around him to "get it" and he understands that me explaining him to them helps in this department. He has come across many people who don't "get it", and believe me when I tell you that he has a hard time accepting that (as do I). You see, one of the hardest things about raising a child with disabilities, is coming across people who are teachers or administrators that don't understand your child, his disabilities, and what that means for him in their school or classroom. Don't get me wrong, there are many, many who do get it, but unfortunately there are those who don't. In fact, this in an area in my job that I am passionate about, but that's another post. It is important to us that we share our story in order to hopefully educate others. Please know that I have Jacob's full support in sharing. :-)
We made the official decision to put him on an Alternate Curriculum. What this does is allow Jacob to not be pushed to do academics on grade level, since it is way too hard and stressful for him. He is in 10th grade, but really works on a 5th or 6th grade academic level. So to continue to ask him to try work at school on grade level was only creating a lot of anxiety and not getting us anywhere. One of his teachers at the beginning of 9th grade called me to talk about the fact that he is higher academically than others in his class. I told her I know, but if we try to mainstream him in any way, the work is way too hard, the big classrooms only stress him out, and all of those great things that we've gotten out of him at school the past couple of years go away. His anxiety goes way up, and he shuts down. We now have him happy (priority #1), liking school, making eye contact and eagerly communicating with some (not all...yet...) of the people around him, and wanting to try a few new things here and there. I promise that this is not where we were in intermediate. Getting the real Jacob to start to come out at school was no small feat, and I'm not going backwards. The other thing an Alt Curric does is keep him from applying to most (if not all) four year colleges. You are making the decision that they won't go to college. This is a huge decision for many, obviously, but for us it was a no-brainer. We felt that this was not an option anyway, so let's just move in the right direction for him now.
I've also had the conversation with him that he will not drive. I was worried about how he would take that news, but he was actually incredibly relieved. Could he pass the test? I don't think so, but being able to make the sometimes instantaneous decisions that it takes to drive a car, especially these days, is not something he is up for either way. He feels this too, and knows that his anxiety would be too much for him anyway. Great to have overcome the hurdle of telling him and him accepting, but that is clearly another area of his life that we will have to figure out.
With help from the school district, we are beginning to look into job options for him. There are some programs this summer through Texas Workforce Commission that I'm working on applying for. One is a job program where he works 18-20 hours a week at a local business, and TWC pays his paycheck, so the businesses aren't out anything in the hopes that more will be interested. The other is at UNT in Denton. They help during the day with job skills and the evenings are spent working on ways to live independently. I'm sure I will post about those, if they happen.
The next big hurdle will be his wrist surgery. I'll be calling Scottish Rite Hospital in March to set up a surgery day for June. We'd like to do it as soon as school is out in order to give him the summer to recuperate and be ready for the next school year. This means his right wrist will be straight instead of curved in, and his fingers will look more natural too. It helps with how everything looks, but also with functionality. The big plus for him is that he doesn't have to wear his hand brace anymore, which makes him extremely happy.
The day-to-day
Lately, the big thing has been hand washing... again. He started to compulsively wash his hand a few years ago, back when he started Intermediate school and was incredibly stressed out. Once we worked through all of that though, it stopped. Well it started up again recently and I couldn't figure out why. At first it wasn't a big deal, it was just a matter of keeping enough soap in the house. But then his hand started to crack and bleed, and I couldn't even keep enough soap in the house. Plus it was becoming time consuming, making bedtime and getting out the door in the morning before school take longer, and therefore more stressful. He was really worried about germs or "poison" getting on his hand. I started realizing that he was wanting to see on the news every day how many died from the flu. Of course this season being one of the worst in a while, the news didn't disappoint. Now, we try not to watch the news anyway, because all they do is talk about people dying, and Jacob doesn't like this (not that anyone does in this house). I talked to one of his sweet teachers and asked her not to stress hand washing with him, and any extra cleaning or flu talk would maybe need to be done out of Jacob's ear shot. He hasn't quit yet, but we seem to be making some progress in that department. Hopefully soon we'll be done.
He has also been doing the basketball score board a few times at the Senior High, but not enough in my opinion. I'm wanting to look into one of the Parks and Rec Depts around here to see about that maybe being his part-time job, but we'll see. He also enjoys the HOPE (Helping Our Peers Excel) students at school. This is a great program where students have to apply, but also receive credit, and they help Jacob and other students around the school. It's so nice, because instead of Jacob having to have an adult follow him around to help, they are his peers. :-) He also did Best Buddies this year, which has been fun. It is a national program, and each student who signs up gets paired with a "buddy". Jacob's is this beautiful blonde junior.... ;-) She is sweet as could be and he enjoys talking to her. The Best Buddies program organizes outside of school events like pumpkin carving at the pumpkin patch, a Thanksgiving feast, and a Valentine's dance. There is also a Best Buddies fundraiser walk in April that I think we will be a part of. It's so nice to have outside of school things that he can be a part of (without me).
Moving forward, this summer one of my priorities is to make sure his Special Needs Trust is in order and that we have a tentative plan for his future. Or as much as we can at this point. Not sure exactly what the future holds, but at this point he just needs to be a high school student and find a part-time job in the summer. Soon enough will be graduation.... yikes!!
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