Tuba News

Tuba is loving his first "job" this year. The above pic was taken at his job. He is still at the high school but now in a program to learn about and try out different jobs. At age 21 he will exit this program ready to work.

He is currently working at our school district headquarters. He LOVES it!! He shreds paper, stocks paper in the copy machine, cleans tables (okay...he doesn't like this task), and delivers interoffice mail. 

The employees all know Tuba and they love having him working at the office. It's a perfect job for him as he loves to socialize and feels comfortable in the environment. 

His class takes lots of community outings too. They shop for groceries and make their own lunches. Tuba really likes the grocery store and is quick to say, "EWWWW" to a food he's not fond of. 

His seizures have been much better. Thank you to everyone that prays for him! He has only had a large seizure about once a week or every other week....instead of several a day. So glad!! He does have a few small quick ones a day (they look like a startle and last only a second).

Tuba lost about 20 lbs. when the seizure activity increased and his meds had to increase. One of his meds was subsequently decreased. He has now regained most of the weight. He is always saying, "eat"and pointing at the fridge....a true teenager bottomless pit! 

Cam has decided to do some triathlons with Tuba! We already have the bike trailer to pull Tuba in and now Cam bought a special needs stroller. Cam runs and pushes Tuba! The man is crazy....and fit....and crazy. Tuba LOVES it and yells "faster, faster" at Cam. For the swim portion of the event Cam is going to pull Tuba in a raft that's tied to himself. They haven't tried that portion yet. 

A finally....a funny Tuba story. Tuba has a couple naughty words or phrases he says. It's really embarrassing because he says them VERY clearly. His favorite thing to say when he's mad...or just trying to get attention is "ass". Then if he's really worked up he likes to say "ass balls". Now, I'm DYING to even tell you this. I can assure you that nobody in our house goes around yelling, "ass balls" so he didn't get it for one of us.....Okay, maybe the ass part but not the two together. Ugh! He made up this little creation all on his own. If he's SUPER MAD he will string together "poopy ass ball". Oh.My.Word. I don't even know what to say to that. 

I will admit that secretly Cam and I laugh about the Ass Balls phrase. If one of us is having a bad day we will send a text saying Today is ASS BALLS!! It makes us laugh. I told my friends at book club about Tuba's phrase. They loved it. They all started saying it to their husbands...the husbands all started saying it too. For a surprise my book club had t-shirts made that have a donkey (ass) and a bunch of soccer, football, and basketballs on the front. I about died laughing! They totally "get" Tuba which made me get all teary.

So...the funny story part. At Tuba's IEP meeting his speech therapist and I were talking about ways to redirect and get him to stop saying his naughty words. She has been working with him to be polite....say excuse me, etc. 

The other day I was coming up from the basement with a  big basket of laundry. Tuba wanted to come down so he says to me, "MOVE!". I kindly told him that he needed to be polite. He responded so nicely with, "Excuse me". I was so thrilled and praised him. Then as he passed me he belted out, "ASS!!". Of course I couldn't laugh so I held it until I was in another room. Well, at least he got the polite part right. It's a work in progress.

That's my Tuba. He's a gem. He regularly comes to get me to look at the sunset. He's my built in sunset alarm clock. Love him!

Sir Tuba

I have so much to catch up on. Holy Week was amazing and Pascha was so fun! Plus, Tuba went to his prom. I'll tackle the prom bit first since I know Grandpa is dying to see photos of him.

The prom was on Holy Saturday. I got Tuba all ready to go and pinned the boutonniere on him (Cam and I got it for him). He was beyond thrilled with his tux...especially the shoes!! The shoes are patent leather and he LOVES them. He could barely walk because he was looking down at his feet. :)
I drove Tuba to the high school. On the way there I got all teary (more like blubbering) looking at my handsome boy. By the time I arrived at the school I had to blow my nose and wipe my eyes. It was kind of fun and nostalgic to take Tuba in for the dance. He goes to my alma mater. The cafeteria looks exactly the same as when I was a student and attended dances there.
When we walked in I was shocked to see so many kids. The dance was put on by the Honor Society and all of the kids in the Honor Society were attending also. I was so surprised to see hundreds of teens dressed in prom wear. I thought the kids would plan the event but it didn't occur to me that they would also attend. It was so special to see all the kids.
I sought out the teacher who is the leader of the Honor Society to thank her. Of course I couldn't talk without bawling. She told me the kids love to do it and that many of the kids say it is their favorite dance of high school. Wow! She also told me how they do a fund raiser and secure donations for the event (including a free tux rental for each boy). So many wonderful companies pitch in to make it happen. The tables were set with matching sets of china. Beautiful. The tables were draped in linen and had stemware, and silverware along with floral arrangements and candles. Beautiful! The dinner was catered and was so nice! The Jazz Band was playing during dinner.
I left Tuba to enjoy himself and ran home to get myself and the family ready for Pascha night. At 9:00 we picked Tuba up and headed to church. When Cam went in to get Tuba he found him red faced and dripping sweat rockin' out to the DJ. The kids had big beach balls blown up and Tuba was throwing it into the crowd and dancing all at the same time. Cam was told that Tuba is quite the ladies' man and had his picture taken with about every girl in the room!
Next stop was church....for Tuba's favorite service of the year. The service starts at 10:00 pm and ends at 12:30 am. Tuba was going strong the whole time. He was so excited to show everyone his tux! He got lots of attention and pictures too.
It was a magical night for all of us.

More Good Ones

More good questions and comments on the post about Tuba's future. Carrie wants to know of any books or online resources to help explain special needs to siblings, cousins and other children. I actually do not know of any but I'm sure they exist. If anyone knows of titles or websites you can leave it in the comments and I'll share it. We have always told our kids that Tuba has an "owie" in his brain and that it is just the way God made him. All of our kids understand that Tuba is different than they are. He takes medication for seizures every day. The kids can all recognize a seizure and will holler for me if they see one. The kids all help Tuba with things he cannot do himself....like put his shoes on or buckle his seat belt. They are a great help...especially Mr. P since he is the oldest. I know that as the other kids get older they will help too. Our kids are very comfortable with other people who have special needs too. Cam and I will always say hello and go out of our way to greet people in the community...especially those with special needs. The kids are used to all kinds of people. The thing I love most about our kids is that they are not embarrassed of Tuba. Let me tell you...sometimes he does stuff that IS embarrassing. He can have a BIG fit in public with yelling, screaming, hitting, biting, spitting, and even tries to pull the back of his pants down. None of the kids are ever embarrassed. That makes a big impression on me. I guess to them it is just the way life is in our family. :) I have often thought that kids will follow the example of the parents. I don't know...I think my kids do better than I do. Of course there is sibling squabbling and teasing with all the kids. Tuba is basically a toddler and we have two other toddlers so it can be a bit chaotic. The difference is that Tuba is a 5'1" toddler and can hold things WAY up the air to keep them away from another kid. :) The other question was from Anonymous and they asked what our plans for Tuba are after we are gone. ARRRRRRRHHHHHHHHHH! Lalalalalalalalalalalala! That is the sound I am making as I plug my ears and go into complete denial. AHHHHHH!!!! DENIAL. It is one thing to be stressed thinking what Tuba will be doing after high school but it's a whole other thing to image after Cam and I are gone. I don't like to go there....at all. I know we have to think it through. Of course we do talk about it. Cam has said that he hopes he and Tuba go at the same time. Really. It is just too hard to imagine Tuba here without us. He does have his siblings. Thank God for them and thank God there are 4 of them. We talk with our kids about them taking care of Tuba. They will all tell you that they are going to have Tuba live with them. They say that they will play video games with him and let him have a fire every day. :) At their young ages they cannot really imagine a time when Cam and I won't be here but as they get older they will understand. Cam and I have some planning to do and we are beginning to find out how to set up a trust for Tuba. Guess I better get going on that....once I take my fingers out of my ears.

Why Home?

I got a great question from Carrie in my comments section regarding the post about Tuba's future. She wanted to know why we wanted Tuba to live at home versus a group home. Good question. Here's our answer. Tuba does not talk...not conversational talking. He does say dozens of words that we understand but he does not have the capacity to talk to us in detail or sentences. We feel very protective of Tuba and feel that if anyone were to hurt him or treat him badly he would not be able to tell us. I do NOT trust that Tuba would be safe outside of our care. Also, we enjoy his company and would miss him terribly. Tuba will not ever be able to hold a job on his own or ride the bus. He is very much like a toddler who has to be looked after at all times. He does not understand safety issues at all....ie: traffic, dangerous situations, etc. I know there are group homes for people such as Tuba but do not want him to live there. I want him with us. His siblings talk about how they will take Tuba for visits with their families when they are grown....so Mom and Dad can go to Hawaii alone. :) I do want to say that I believe there are many good group homes out there. I have an Uncle with Down Syndrome who has lived on his own as an adult and thrives with the help of the staff. We have another friend with an adult son who lives in a group home. This man is much more disabled than Tuba and his placement was right for his family. It's a personal decision up to each family and each situation.

Spa Day?

Yesterday we were eating cucumbers (my latest craving). I was telling Mr. P how cucumbers can make puffy sore eyes feel better. He quickly laid down to try it out. What a ham!


Also, Tuba has been participating in a gymnastics class. The class is for kids with special needs and there are a total of 4 kids in the class. He LOVES it. They get to jump on the trampoline, swing on the bars, practice floor exercises and jump off a platform into a huge pit filled with foam blocks. The only drawback to the class is that it is Fridays at 5:00-6:00 pm. It couldn't be a worse time for us. Papa always works Fri. nights, we are all tired and it's at dinner time. But, we've made the best of it. The little boys come along with Tuba and I. I bring chips to snack on and books to read. Plus, it's so entertaining to watch all the kids spinning and jumping all over. The gym has girls ages 4-18 practicing. It's amazing to watch them! We miss dinner with Papa since he leaves before we get home. But, it's kind of nice to have an easy quick dinner when we get home. We usually have pancakes or waffles....or cereal and toast. Tuba gets great exercise, he's all red faced and sweaty and tired:)