Black Belt

Usually I use this space just to write about Boo and his autism, but I have decided to stretch things out a little bit today. Boo was the first one diagnosed, at the age of two. I was the second one in the family to be diagnosed, at the age of 46. Shortly after that Mouse was diagnosed at the age of 14. Bug is the only one without a formal diagnosis, but every therapist he has ever taken Boo to see has said he is on the spectrum, too. So, we are one happy, spectrumy, stimmy family. But, autism is not all we are. We are writers, runners, coders, musicians, students, the list goes on and on. And as of last night, Mouse and I became black belts in Kung Fu. Bug, who started Kung Fu shortly after us is one test behind and should earn his first degree black belt later this spring.

So, where did this particular story start? In an elementary school gym through community ed. Mouse began Kung Fu almost 7 years ago because her best friend was involved. I was just a parent sitting on the sidelines. Unlike most of the parents, I was not glued to my phone, I was riveted to the action on the floor. Kung Fu looked amazing and I wanted to try it! Eight weeks later I did. Soon after that Bug signed up too and it became a weekly family ritual. In the last 6.5 years I have survived two surgeries and one pandemic. Last night, Mouse and I passed our final brown belt test and became first degree black belts. One of my instructors, whom I have worked with for years reminded me that this is not the end of the story but a beginning of a whole new chapter. At the moment I am feeling all the feels. As a kid I was always the last chosen for any team sport and I dreaded PE. At the age of 13 I discovered running and at the age of 14 discovered running marathons. I did not discover Kung Fu until I was 44. I will not say it was a natural fit, like it is for Mouse, but I will say it started a love affair. Though I am not the worlds most flexible or coordinated person, I can make up for it in sheer dogged determination. This is where my autism serves me well. I can laser focus in a goal and not look away until I get there.

It is five in the morning and I am not sure where I am going with this blog. I have dogs at my feet, a hedgehog in my lap, coffee in my hand. I am very happy. I am so grateful for the Lam family who introduced us to Kung Fu and were always encouraging. I am grateful to Mouse’s friend who introduced to the martial arts in the first place. I am just plain grateful for my family. Thank you for listening to me ramble. Be good humans. Peace, y’all.

Serendipity

Happy March, y’all. I was checking bank balances yesterday and realized that Mr. Boo had gotten his monthly payment from SSI. That would buy a lot of tacos, I mused to myself. About that time Alissa showed up. I told her that Boo had told me (through his device) that he wanted to go to Taco Bell and he wanted a Strawberry Freeze (his newest love) and a cheese quesadilla. “There is money in the account”, I told her, “Go buy lots of tacos!” Boo headed out the door for her car and they vanished into the night. Fifteen minutes later they were back, with the aforementioned foods and a very hungry Boo Bear. “I owe you $20” said Alissa. “Why?” I asked. She said that while they were waiting in line at the Taco Bell drive through a man came up to her car and knocked on the window. She put on her mask and rolled down the window and asked him what he wanted. He said that his name was Sean, he was staying with his family at the Days Inn and he was short $11, could she help him. Without pausing a beat, Alissa passed him $20. He then mentioned he had children back at the motel and nothing to feed them for dinner. Alissa told him to meet her at the drive through window and she would order for all of them. So, she bought dinner for Boo, herself, Sean, and his family. She handed Sean the bag and he headed out and she came home. “I did not want want you to see the receipt and wonder where the money went so I will pay you for Sean’s dinner.” “No way”, I said. “I am happy about what you did. You did the exact right thing. There was money in the account and he was hungry.” “Do you believe in serendipity”, she asked me. “Absolutely”, I said. ” I told you to buy lots of tacos and threw that thought out into the universe. Sean heard that thought and went to Taco Bell. He met you and you and Boo Bear fed him dinner. That is how good energy works in the universe and we keep paying it forward.” At this point Boo had totally lost interest in our discussion and was digging into his meal with gusto.

This conversation will stay with me a while. I do believe in serendipity, angels in disguise, good karma, the works. The energy started when the government put money in Boo’s account. I released that energy when I told Alissa to buy lots of tacos. Sean heard that energy coming and headed for Taco Bell. Alissa caught the energy and fed Sean and his family. So, lots of tacos were eaten and life was good. Peace y’all, be good humans.

Meaningful Communication

Boo Bear is back in school and completely loving it. He loves riding the bus, adores his teachers and is happy to see friends. He has recently been introduced to a new communication device called Nova Chat. It is very similar to Touch Chat, used by all his classmates, but unlike the Touch Chat, Nova Chat is not on an iPad. It simply functions for communication, not games or videos or anything else. One of the options on Nova Chat is to say ” I want to watch PBS Kids”. Boo kept asking for this the other day, which I thought was odd as he has not watched PBS Kids since elementary school. He used to watch it in the morning while waiting for the bus. Anyway, Peter put the app on his home iPad just to see what he would do with. At first he did not really pay any attention to it. After a while he clicked on it and Sid the Science Kid popped up. Boo let out the biggest squeal! He loves that show. He watched an entire episode and then seemed content. Since then he has been using the Nova Chat to tell me when he wants to watch a show on PBS. I was impressed that he generalized that a show that he used to watch on TV can also be watched on his iPad.

For a long time, when Boo has wanted something he will lead a family member or PCA to the desired object and sign “please”. Now when he does this I direct him to his new device and ask him to make a choice there. He is rapidly learning that he can ask for specific foods or drinks or activities, without any of the guesswork on my part. The device is on loan to us through the end of the month. At that time we will decide if we want to purchase it through insurance or try a different device. At this point, I am leaning towards getting it. The company is really good with repairs and trouble shooting and it is a device that he can hang onto after he graduates, unlike the school iPad which he will have to return after his schooling is done.

So, the sun is out, the birds are singing the dogs are demanding that I take them for a run and life is good. Mr. Boo is becoming a good communicator. Never say never. Be good humans. Peace y’all.

Buses, Communication Devices and Boo Bears, Oh my!

Mr. Boo went back to physical school on Monday. He was sleepy when I got him up, but he saw the bus and headed out the door without a backward glance. Now three days in, he has his routine down pat. He leaves at 8:55 am and comes home at 4:15 pm, tired but happy. Gloria is a bit shocked not to have her buddy home all day, but has learned to wait for the bus and alerts me when it pulls up. Most excitingly of all, Boo got a new communication device and it lets him speak in complete sentences. So far he has been asking for gummi bears, gatorade, goldfish crackers and trips to Taco Bell. I have been happily complying. After school, like many teens, he just wants to chill in his room with his device and listen to the radio. He brought home an interesting art project. It is made up various bright colors of string and looks like a lightning bolt. It is titled lightning. I wonder if this is how a seizure feels in his brain. The good news is that he has been seizure free for over three and a half months! I am getting used to having some time to myself. Boo and I have been practically joined at the hip for the last eleven months. It seems odd that if I want to practice piano or go for a run, I don’t have to plan it out in advance and ask for Robert to cover for me. Due to Boo’s medical needs, I really can’t take a job outside the house(and I have at least 32 hours of work a week with him anyway) but I would like to do some volunteer work when it is safe. Two things that I have thought of would be either helping teach a literacy class or rocking infants in the NICU. One of these jobs appeals to my teacher side, the other one appeals to my mom side. If there is heaven, it will be a place where I will find all the dogs that I have loved and lost, and full of infants to rock. It will be a place where seizures are non existent. It will be a place of hope and love. In the meantime, I will just focus on my little community around me and try to create a little heaven on earth. Be good humans, peace y’all.

Don’t Let the Door Hit You

My apologies to my poor neglected blog. My muse went on strike again and the words went away. For a while, the music went away, too, and that was really scary. When I can’t write or play piano, life is not a good place. But, last night I sat down and had a more than decent practice session on the piano. I am working on a piece by Burgmuller called “Farewell”. I intend to play it at midnight tonight while Robert juggles fire. Seems a fitting farewell. Don’t let the door hit you on the way out, 2020! This morning I sat down with my laptop and the words began to trickle out. Life goes on.

Boo is his usually happy self. He is two and a half months seizure free. He got lots of great treats for Christmas. He has had a few fun outings with his PCAs. His new favorite drink is the Strawberry Freeze from Taco Bell. He drinks is so fast he gets brain freeze, his lips turn blue and he shivers all over. But, he has a death grip on that cup and will not let it go until every molecule of sugar has disappeared down his throat. He is a funny fellow, he makes me laugh.

2020 threw him a lot of curve balls. The bus went away, his teacher only appeared on Zoom. There were no Special Olympics. Mommy and Daddy were stressed. Mouse missed her friends and activities. Yet, through all this madness and grief, Boo woke up every day with a smile on is face. He rejoiced in the people around him who love him. He graduated from high school. He cast his first vote in a presidential election and then watched as Mommy laughed and cried as the election numbers came in. He looks forward to watching the inauguration on January 20. He looks forward, hopefully, to returning to school full time in February. He hopes that Special Olympics comes back this spring. We hope so too.

Here is some sage Boo advice for the coming year. Wear a mask. Eat lots of tacos. Hold hands when crossing the street. Wake up every morning with a smile. Love your neighbor. Pet all the dogs. Be a good human. Peace.

Always Read the Fine Print

Yesterday, Robert and I attended Boo’s annual IEP meeting. Like everything else during the pandemic, it was via Zoom. I have to give major props to his teacher for being able to pull together an IEP for him when she had only worked with him five times in person. As a teacher and a parent I have sat on both sides of the IEP table. I have watched parents collapse in tears out of sheer frustration of trying to get their child’s needs met. There have been times when I have wanted to tip over the table just to get my point across. Nonetheless, I have always tried to be as professional as possible, both as teacher and a parent. In 16 years of IEP meetings I have never lost my cool, until today. We were discussing Boo’s hopes and dreams for what he would do when he left school. His teacher read from the page, “Boo hopes to move into a group home on a farm because he likes animal.” My immediate reaction was along the line of “What the hell?” There has never been any talk about Boo living in a group home. I am his primary caregiver and it will stay that way. The teacher looked at us, we looked at her. “No, just no.” I said. ” Okay,” she said, we are just deleting that part.” “Thank you.” I replied. “So” she continued, “I see he does not qualify for ESY.” “What?” I snapped. “He most certainly does. He did not attend last summer because he hated online school and we opted out. He has always qualified.” “Oh, interesting,” she said. “Well he certainly does qualify, so I will just put him back in. Has he always attended ESY?” “Every year of his academic life”, I answered. The rest of the meeting was uneventful and relatively pleasant.

I came away from this meeting remembering what I have always told other parents. Never sign an IEP at the meeting. Take it home and go through it with a fine tooth comb. If you do not agree with something, do not sign. Put your disagreement in writing, call another meeting, make a paper trail. If something in the meeting does not make sense to you, stop the meeting and ask for clarification. These people are on your child’s team. You and they are his advocates. Advocate for him, or her.

I was musing to a friend how on earth the goal about living in a group home on a farm managed to end up in Boo’s IEP. She said in high school teachers are trying to prep the kids for the outside world. Sometimes they ask leading questions about what the student may want. Sometimes they put words in their mouths. Sometimes they just copy something from another IEP. In Boo’s case, I think it is the latter. Boo has no way of knowing what a group home is. He has no words on his device for that, or farm, for that matter. Yes, he likes animals, but we have plenty of those at home. The whole thing was patently absurd.

IEP meetings are hard, even when you have the best team of people doing the best they can for your child. In the same meeting I was told that Boo is both really smart and deeply, deeply disabled. In my heart, I know these things. I have known them for a very long time. But, it never makes hearing it any easier. I would not change Boo for the world, but I will try to change the world for him. If I had a magic wand, I would not get rid of his autism, because that is intrinsically a part of who he is. But, I would wave that wand in an instant if I could make his life easier.

Boo is so happy to be back in school, even if it is only two days a week. Sadly, in person school is going to go back online for two weeks due to staff members with Covid. Boo is not going to understand why his bus will not come. I hope and pray that this is only a two week hiatus. Boo, and his classmates, need to be in school. I will really have to step up my game until the end of the month to keep him happy and engaged. He has a new Touch Chat app on his iPad that he is learning to use. He has not had a seizure in almost a month. He is slowly gaining weight. He is happy. It seems cruel of fate to take school away when he has only been back for two weeks. Pray for us that I can keep him engaged and happy.

As always, be good humans. Stay safe, stay in touch. And, always, always, read the fine print.

Halloween, Boo Style

Boo did not used to like Halloween. It did not make sense to him. Nothing about it added up. He knew darn well he was not supposed to knock on strangers doors and ask for candy, and masks are weird. It was not until he was about 14 that he got into it. He understood that one night a year it was okay to dress up and beg for sweets. Most 18 year old are done with Halloween, but Boo got a late start, so we still celebrate. This year, as we all know, has been a bit different. Covid has taken over everything. Even though people would be outdoors and wearing masks, I was still a bit nervous about trick or treating, so Alissa and I came up with a different plan. Our costumes were easy and to the point, we dressed up as flies, in solidarity with the fly who attended the vice presidential debate. We dressed in black and wore huge sunglasses, wings, and antennae. We did not realize how much glitter was on the wings until we got them out of the package, but it was a small price to pay. So, we had the costumes, now what about the treats? We decided Boo was just in it for the candy, so a few nights before Halloween we all dressed up and hit the streets. We carried our own candy with us. We let Boo roam around the neighborhood, antannae bobbing happily, and fed him as much chocolate as he wanted. After about 20 minutes he got cold and headed for home, happy. So, Halloween was saved. It did not matter to Boo that we celebrated a few days early. He got to dress up, hang out with his favorite people and eat candy. What more could a Boo ask for?

Today we are going to turn in his ballot. It came back to us because I had left one box unchecked. I am grateful that whoever looked at his ballot caught the error, and instead of throwing it out, mailed it back to us. So, we will trot over to our local drop off site and put the envelope in its proper place. The drop off point is very close to Taco Bell, which is Boo’s newest favorite thing, so we will probably stop off for some tacos and a slushy. After all, one must celebrate democracy.

I am more nervous (actually terrified) about this election than I want to let on to Boo. Robert and I have donated money to any down ballot Democrat we could find. I have made calls and texted for Biden and Harris. I have prayed and paced. I have voted. Robert has voted. Boo has voted. Mouse is jealous that she is still two years from being able to vote. I hope by the next time I blog about Boo I can annouce a victory in the form of blue wave. If you have not gotten out to vote, you have today and tomorow. Do not sit this one out. The time to act is now. If Boo can vote and make his voice heard, so can you, no excuses. Go cast you ballot and be good humans. Peace.

Boo On The Bus

Boo’s magical day finally arrived, October 21, 2020, seven and a half months after he had left school. The bright yellow object of his desires pulled up in front of the house and he climbed on without a backward glance.

Slowly, schools are starting to reopen. The first to open, in a hybrid fashion, are level 4 schools, which include Bridge View and Focus Beyond. I had not talked much about going back to school to Boo because I was afraid it would not happen. In fact, I really did not mention it at all until Monday of this week. We were out walking around our neighborhood and we saw some school busses. Boo perked up immediately. I told him that the bus was coming for him on Wednesday morning. On the appointed morning I woke him up early and got him dressed. He did not seem to think I was serious about school happening until the bus pulled up. He had a look of complete astonishment on his face. Nonethless, he hopped right on.

I received several calls from his wonderful teacher that first day. She was worried that he would not eat breakfast or lunch. I told her not worry, he was probably just too excited about being in school to eat and he would eat when he came home. She called again at the end of the day to tell me that he had had a wonderful day, done all his work and seemed very happy. The speech therapist also contacted me about setting up a new communication app on his school iPad.

Boo returned home at 4:30 that afternoon, ravenous and in a wonderful mood. He ate his way through the refrigerator and then happily went off to his room to stim with Dapi (our nickname for iPad.) He crashed early last night, and zonked out for a good 11 hours. This morning he was sleepy but ready to go again. This is the happiest I have seen him in months. He is bright, engaged and cheerful. For now, school is only in person two days a week, but I hope we will get more days in the coming months. The pandemic was hard on all of us, but particularly hard on kiddos with special needs. I am praying for a blue wave to engulf our nation early next month, new leadership to step in and guide us through and out of this pandemic. If you have not done it already, get out and vote! Boo has cast his ballot. Have you cast yours?

The Ongoing Adventures of Boo

My muse went missing a few weeks ago and did not leave a forwarding address. This frustrated me, as there was a lot going on I wanted to write about, but I was stuck. Luckily, she showed up again last night. Boo has had a busy couple of weeks. He went to the dentist and got a clean bill of health. He rocked his appointment at the eye doctor’s and chose a new pair of glasses. A week later the glasses came in and he can see again. His transition school is going to reopen part time next week and to welcome all the new students, the teachers and aids did a drive by parade past our house to welcome him. The parade was lead off by a fire truck. Boo did not seem terribly impressed when I told him most people do not get this kind of welcome to higher education. Anyway, I thought the fire truck was cool.

Most importantly, this week Boo Bear voted in the general election. We discuss politics a lot at home and I make a point of showing him all the political yard signs around our neighborhood. When our absentee ballots came in the mail, I just asked Boo yes or no quesitons about the candidates and he pointed to the his politician of choice. The next day he, Alissa and I took a field trip to the polling place and he proudly put our ballots in the box. Being nonverbal does not stop one from doing their civic duty.

I have mixed emotions about sending him back to school after a 7 month absence. We have been together, nearly joined at the hip, since March 9. We have been through sickness and health and seizures that I thought might never end. I have spent nights sitting at the foot of his bed, watching him breathe, as if the seizures would be scared off by my very presence. I am the first face he sees when he wakes up the morning and the last face he see when he goes to sleep at night. He loves his PCAs and his daddy, but first and foremost, I am his person. He loves school, but I think getting used to it again after such a long break may take a while. He has a new teacher, a new building, and new classmates. He will be going to school two days a week, instead of five. Everything is different. And, I can bet my sweet autistic hat that different is not always good. Autism loves familiarity and routine. Until Boo establishes a bond with his teacher and gets into the swing of a new routine, things may be dicey for a while. It’s hard to tell what is going on with him right now. Before he has a seizure he can get very weepy and shaky. He has been weepy and shaky most of today. I worry. We have been seizure free for almost 4 months, but Epilepsy never goes away, it just lurks in the background, waiting to pounce. I hope that we can weather this particular storm without any seizures. Maybe it is just a passing mood.

So, hold us in your hearts, friends, as we begin this transition back to school. It may be a bit of a wild ride, or Boo might surprise me again and take to it like a duck to water. One way or another, the bus will pull up in front of our house next week and he will get on it. Suddenly, I will have 8 hours of my own. I have no clue what I am going to do with myself, but I am sure that I will figure it out. Be good humans, and don’t forget to vote.

Thank you RBG

Last week we lost a giant of the Supreme Court. This week I was reminded of the many things she has done for women. Boo Bear finally got approved for disability. Earlier, I had tried to open a bank account for him but was denied because, though I had the guardianship papers, I did not have a paper that said I was the “representative payee”. Apparently, these are the magic words that a parent or guardian needs to open a bank account for their adult child. To my delight, this piece of paper came in the mail and I promptly took it to the bank. It took about an hour of work to get the account set up, but the banker lady was more than gracious and patient with me. As we were going through the pages of paperwork it occured to me that without the tireless work of RBG, I would not be able to do any of this as a woman. Before Ruth, women could not open a bank account on their own, have their own credit card, rent an apartment by themselves or purchase birth control without the express consent of their husband. I have been able to do all of these things. I am so grateful. So, as I signed the final documents to give Boo Bear his bank account and some financial security, I sent up a tiny prayer of thanks to Ruth. May her memory be a blessing to all of us.