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.
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.
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.
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’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?
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.
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.
About ten years ago I was out running in a snowstorm. In a very unusual move for me, I had ear buds in and was listening to a variety of music. I have probably run with ear buds three or four times in my life, as I tend to lose myself in the music and not pay attention to my surroundings. Anyway, on this run I was praying, as I often do. I was asking God if Ravi would ever speak. Suddenly, the music on my iPod shifted to the song “Mary did you know?” Here are the lyrics which stood out to me:
“Mary did you know that your baby boy will give sight to a blind man? Mary did you know that your baby boy will calm a storm with his hand? Did you know that your baby boy has walked where angels trod? When you kiss you little baby, you kiss the face of God.”
“The blind will see, the deaf will hear, the dead will live again. The lame will leap, the dumb will speak, the praises of the Lamb.”
These lyrics stopped me in my tracks. “God”, I asked, “Is this for real?” The song ended but instead of going on to another song, it repeated, and those lyrics stood out to me again. I was deeply moved. I have carried this memory in my heart for over ten years.
Yesterday Boo Bear and I were hanging out in his room. I was sorting laundry and he was playing on his iPad. He uses his iPad to tell me where he wants to go, what he wants to do, who he wants to see, but it is usually a very one way conversation. Yesterday was different.
Boo Bear: “I want to go to a restaurant.”
Harriet: “We went to Dairy Queen today.”
Boo Bear: “Misty Slush.”
Harriet: “That is correct. You had a Misty Slush.”
Boo Bear:” Culvers.”
Harriet: “Well, we are having chili for dinner tonight but I bet Peter will take you to Culvers tomorrow. What would you like to order?”
Boo Bear: “Hamburger with cheese.”
Harriet : “Okay. We will tell Peter that is what you want. How many hamburgers do you want to order.”
Boo Bear: “One.”
This is the first actual back and forth conversation I have ever had with my son. Usually he just tells me what he wants, or leads me to the desired object and that is that. This time, he chose to engage with me and have an actual conversation. The lyrics from the song came back to me. “The blind will see, the deaf will hear, the dead will live again. The lame will leap, the dumb will speak, the praises of the Lamb.”
I have known for a long time never to underestimate my son. He will always surprise me. I also know that God’s love for Ravi is steadfast and unending. Miracles do not happen overnight. Prayers are not always answered by return mail. Sometimes the answer to a prayer can take a decade or more.
Right now, in a world consumed by fire, disease and sadness, I cling to such moments of light. On this morning of 9/11, nineteen years later, I am still overwhelmed with grief. But, I also believe that God works and moves among us. There are pockets of light that shine in when we look for them, or sometimes even when we are not looking. I see the grace of God through my children. Where do you see God in your life today?
Boo and Gloria are best friends. She wakes him up with kisses every morning and helps tuck him in at night. I could say that he shares his food with her, but generally she just snatches it out of his hand. Whenever you see one of them, you usually see the other. Last week I had to take Gloria to the vet for her Lyme booster. Boo came along for the ride. Due to Covid, we no longer go into the vet. You call them upon arrival, a tech comes out and collects your pet, you wait in the car, and they bring your pet back when they are finished. It takes very little time. So, I figured Boo would like to go for a ride in the car with Gloria and I brought him along.
We pulled up in the parking lot and I called the front office. They said they would be right out. Boo was happily sitting in the back seat, stimming and babbling to himself. A few minutes later a tech came out to collect Gloria and Boo completely melted down. He could not understand why I had just handed Gloria off to a complete stranger. He looked at me as if so say, “Am I next?” The tears and snot were in full flow. I felt horrible. I told him over and over again that Gloria would be right back and we would go home. He continued to cry. Fortunately, the tech was really quick and Gloria was back in under three minutes. As soon as she was in the car, Boo stopped sobbing and gave me a very watery smile. My heart broke again. We headed home.
When I brought Gloria home a year ago Boo took one look at her and cried. He thought he was being replaced. But, Gloria managed to worm her way into his heart. She sits on the bed with him when he is on his iPad. She follows him around the house. She kisses him good morning and good night. Though, thank God, he has not had a seizure in 8 weeks, she curls up with him after a seizure and keeps watch that nothing bad will happen. Boo does not have this bond with our other two dogs, just with Gloria. They are a funny little duo, a man/child with autism and epilepsy and a 14 pound ball of fluff who secretly thinks she is the size of a Great Dane. Right now, Boo is still sleeping and Gloria is busy herding the big dogs. When I wake him up for his morning meds she will be right there with us, ready to start the day and partake in whatever adventure he may take her on. Peace out, folks, and pet your dog. If you don’t have a dog, you may borrow one of mine.
My muse has been lying fallow the last few weeks, but this does not mean that I have not been busy with Boo. He seems to be enjoying his summer. He has made friends with the workers at Subway and Wendy’s. We go for long walks. He wears a mask like a champ when we are out and about. We are five weeks seizure free and for the most part he is sleeping. This morning was the exception.
Typically, Boo needs about eleven or twelve hours of sleep a night to function and not have seizures. Generally, he goes to bed around nine or ten and wakes up about the same time the next morning. This morning I had planned to meet Alissa at the Y for a workout and then have coffee. She has been under quarantine for the last two weeks and we have missed her. The good news is her test for Covid 19 came back negative! So, I was looking forward to seeing her.
At 4:15 this morning I woke up to some persistent thumping noises. It was Boo. He was not having a seizure, he was just being is usual percussive self. I waited a while to see if he settled down, but it was a no go. I made some coffee and waited a little bit more. Nope. I texted Alissa, who is used to our erratic schedule, and asked for a rain check for the workout and coffee date. I went in to see Mr. Boo. I was greeted with an ear to ear grin and more thumping. He bounced up and into the bathroom, drank about a quart of water, grabbed his beloved iPad and climbed back in bed. I began the morning med routine, making sure that Boo, Stevie the dog, and I all had the proper meds on board. At the moment, Boo is happily chatting with his iPad, the dogs are snoozing all over the floor, and my house, though not quiet, is at least calm.
Autism had taught me many things and the primary one is patience. I may have planned to go to the Y and to coffee this morning, but Boo had other plans and needs. He needed to see me and make certain that his world was secure. He needed a drink of water. He needed his iPad. Now that those needs are met he is content. He knows I am just one room away, pecking away at my laptop and sipping coffee. He knows that later we will go out on walks and adventures. He is not a hard kid (young adult) to entertain. As long as I am around and he has his iPad and little trips out into the outside world, he is happy. He does not need expensive toys, flashy clothes or the newest iPhone. Happiness is a gummy bear or juice box. Happiness is early mornings when only the two of us are awake.
I think of a few lines from William Blake: “Every morn and every night, some are born to sweet delight. Every night and every morn, some to misery are born.” Mr Boo, you were born to sweet delight and that makes me so happy. You do not pity yourself or understand or have the time for those who pity you. My deepest hope and prayer is that you will always find life to be sweet delight. Certainly, you delight me. Love, Mom.