Gains and Losses

Boo Bear has been a little more subdued these past few weeks. He brought home a cold from school which he cannot seem to kick. Because he is a generous guy, he shared it with the rest of the family. Since this is the first time any of us have gotten even the sniffles in the last 15 months, I am rather insulted. The world is opening back up, thankfully, but our immune systems have some catching up to do.

When Boo feels ill, his appetite is the first thing to depart. He is a skinny kid anyway, always on the go, and calories around him do not stand a chance. I was getting him out of the tub the other morning when it struck me how terrifyingly thin he had become. His appetite had been off for about a week and he seemed more subdued than usual. Instead of rocketing around the house, or joining me for long walks, he was staying in his room, curled up on his bed or bean bag chair, playing with his iPad. He did not seem interested in even his favorite foods. I asked his teacher what she was seeing at school. She checked in with staff and reported that Boo was only eating a bite or two at breakfast and lunch and turning down even his most favorite foods. This was Monday. I called and made an appointment for him with his doctor and scored an appointment for Wednesday. Tuesday I left work early, stopped by Subway, and brought his lunch to school. He was happy to see me and it was a beautiful day to sit out in the courtyard and eat. Sadly, he only drank the Gatorade and took three bites of his sandwich. He ignored the rest of the sandwich and the chips. Half an hour later his teacher came to get him and I called it quit on lunch. I gave her the remainder of the lunch and asked her to offer it to him later, or save it for the next day. When he got home that afternoon I was able to interest him in a chicken breast and a bit more sandwich. His PCA took him out for ice cream, which he enjoyed. Wednesday I picked up him from school for his appointment. Staff told me he had eaten a bite or two of school lunch, the rest of the sub, and some chips.

At the doctor he waited patiently in the lobby, using his Nova Chat to request PBS kids. Soon we got called into an exam room. The nurse put him on the scale and he weighed in at 112 pounds and 6 feet tall. Both of us gasped. He had weighed in at 117 a month ago, and that had been skinny enough. The doctor examined him from top to toe. I was proud of him when he used the Nova Chat to tell the doctor that he had a cold. He would not tell her if anything hurt. I love Dr Wilson because she intuitively gets kids like Boo. She talks to him like an adult and includes him in all of her conversations. Boo responds well to her, even letting her listen to his heart, look in his ear, and examine his throat. Getting Boo to open his mouth wide enough to look inside practically takes an act of Congress, but he did it for her. She could find nothing wrong with him besides being drastically underweight. She ordered a bunch of lab tests and some nurses came in to take blood. Boo was an absolute angel with the blood draws. As long as he could hold my hand, play with his device, and watch what was going on, he was fine. The doctor said she would call as soon as labs were available. We headed out to Target to pick up some groceries and a celebratory Lemonade Freezie from Taco Bell. Boo enjoyed the Freezie but only picked at the chicken that I had picked up for him. Over the course of the evening, I kept trying to slip him bits of chicken, crackers, cookies, Gatorade, anything to keep the calories coming in. He seemed distressed by a large amount of food in a bowl, but if I just kept slipping to him a bite at a time over the course of the evening, he would eat.

RIght now I can hear a lot of parents of a different generation wondering why I am worrying so much. “He will eat when he gets hungry”, is the familiar refrain. Well, probably not. Autistic kids and adults can be notoriously picky eaters. Things smell, taste, feel different to them then they do to neurotypical folks. Boo’s choices in foods have broadened immensely since he was a toddler, but when he is feeling ill, all bets are off. Even comfort foods are an iffy proposition.

Later in the evening, the doctor called. She said his lab worked look perfectly normal. The labs on celiac disease and thyroid levels were still pending, but all his organs were functioning, his electrolyte panel looked good, he did not have mono or an elevated white blood cell counts. She said this was good news, but also frustrating as we still do not know what is causing the weight loss. She said she would call me back tomorrow afternoon when she got the rest of the results.

Boo conked out early, leaving me to toss and turn in my bed (I am still battling a nasty head cold) and wondering about autism, anorexia (a beast I am only now beginning to recover from) and life in general. Eventually, I gave up on Morpheus , brewed some coffee, and began working on this blog. I will send Boo to school today with a lunch bag full of his favorite foods. His staff knows to encourage him to eat in little bits over the course of the day. One of my favorite friends in California, who has a son much like Boo, is going to send us some chocolate cannabis to try and boost his appetite. So, I am both happy and worried. I am very proud of Boo for being such a trooper at the clinic and being able to tell his doctor that he had a cold. This is a huge breakthrough. I am very worried about his being so thin and subdued. If you could send my boy some love, some good vibes, or a calorie or two, it would be greatly appreciated. Peace out and be good humans.

If The Shoe Fits

Speech therapists make the world go around. I had the best conversation with Ravi’s speech therapist and her friend who is professor of speech and language at UM Duluth. We were talking about using alternative communication devices for students who are primarily nonverbal. She was very interested in Boo Bear because his language skills are growing by leaps and bounds as he nears his 19th birthday. When Boo was little I was told if he did not speak by the time he was five, he never would. Fortunately, I never bought into this theory. Boo will communicate on his own timeline, just like he does everything else. I was thrilled to hear Deanna talk about her observations of Boo in the classroom. He is using his Nova Chat to speak in six or seven word sentences. He will comment on what others say or what he is thinking about. There is so much going on in that brain! Jolene, the professor offered a wonderful analogy about finding the right communication device for nonverbals learners. She and Deanna firmly believe that everyone can learn to communicate. The analogy goes like this. If you went into a shoe store and tried on a pair of shoes that did not fit, you would not throw them away and say you would never wear shoes again. You would simply put them back and find a different pair of shoes in different style or size. The same is true of communication devices. There is not one size fits all. Luckily, there are tons of different devices on the market that one can test trial. You just keep trying until you find something which clicks with your learner. So many of Boo’s teachers thought he would not be able to use a device at all. The options they offered were very simple, only offering one of two options per page. Turns out the reason these did not work for Boo was they were too easy. His current device has multiple pages with twenty options on each page. The Nova Chat has a very rich vocabulary that Boo immediately tapped into and began to use. For years he has had all these words bottled up inside of him and no way to get them out. This must have been so frustrating for him. I have noticed a huge decrease in frustrated behaviors at home and Deanna says at school Boo is very relaxed, happy, and focused.

Originally, my interview with Jolene and Deanna was only going to last about half an hour. The ideas got flowing and we chatted for nearly an hour and a half. I talked about my frustration with the annual Autism conference which does not have any options for young adults on the spectrum. Everything is focused on early childhood intervention. This is not to say that this is a bad thing, but autistics still have multiple needs after they age out of the system. Deanna suggested that we submit an abstract for a joint presentation. She would speak as a speech language pathologist and I would speak as a mom. Jolene followed up on this by saying she was teaching a graduate class in the fall and would I be willing to be a guest speaker? I was very enthusiastic about both ideas. I love my blog and my followers, but this would be an even better way to get the word out about Boo Bear and his peers.

So, it was an amazing morning. I came away from it with an even deeper love and level of respect for speech pathologist. They really do make the world go around. And, remember, if the shoe does not fit, try on another pair! Peace out, y’all, and be good humans.


I was super nervous yesterday because I had to take Boo Bear to the dentist. He does not like the dentist as we have dealt with a truly evil one in the past. His current one is a very gentle soul who looks a bit like Santa Claus. We prepared for the visit by reading a social story about going to the dentist. (Thank you teacher Rosaline.) I picked him up from school a little after lunch time and we headed out. In the waiting room we read the social story again. A very sweet assistant led us into the exam room and Boo willingly sat in the chair. He was holding onto his Nova Chat, his communication device, and talking about the weather and the day of the week. The assistant was really interested in what he had to say and how the device worked. I liked her immediately because she talked to Boo Bear, instead of me. What happened next completely stunned me. Boo flipped through his device and told her “Brush my teeth.” I almost fell on the floor. I did not even know that the phrase was in there, let alone that he knew how to put it in context. “Alright”, said the assistant, “You really like your device, don’t you?” To my absolute astonishment, Boo opened his mouth and said , Uh huh”, clear as day. Boo can go for months or sometimes years without speaking, but when he does speak, it is always accurate. I actively worked on pulling my jaw off the floor as the dentist came in. It was clear that Boo did not like the electric toothbrush, so he quickly switched to a regular one. With some gentle coaxing he got Boo to open his mouth and have his teeth brushed. He checked the teeth and gums, said he looked very healthy and to come back in 6 months. With that, the visit was over and both Boo and I relaxed for a moment and then returned to school to finish up the day.

I wrote to his teacher and his speech therapist about what had happened. Deanna, his speech therapist, said that there is a growing body of research that shows that once non verbal persons begin to have success communicating through a device, actual spoken words start to pop out, too. She thought this was interesting enough to reach out to a friend and colleague who teaches as UM Duluth. The professor was really interested in hearing more and wanted to know if I would be interested in doing an interview with her! I told Deanna yes. The professor (I don’t know her name yet) said that this could be used to shape how future special ed teachers and speech language pathologists teach and understand non verbal students with complex needs.

I am still trying to wrap my head around yesterday. I have always believed that Boo has words in him. It is not important to me if they are words spoken from his lips, words through a device, or sign. When Boo was little the common theory was that is a child did not speak verbally by the time that they were five, they would probably never speak at all. I never put any stock in this theory. For his entire life Boo Bear has done things on his own timeline. My job is to assist him in best using whatever form of communication comes most naturally to him.

Oh, and a side note. The assistant at the dentist office was super cute and Boo was definitely flirting with her. He was smiling, batting his eyes and acting coy. Yes folks, he is an eighteen year old guy. And I am just a proud mom.

Purposeful meaningful communication

I have been laying low this April during Autism Awareness month. Generally, April seems to bring out all the crazies and I am trying to avoid them. I don’t really appreciate women who call themselves “Autism Moms” when they do not themselves have autism. It seems they are trying to gain an identity through their child’s disability. I also really don’t like puzzle pieces or t shirts with puzzle pieces that say “He is my heart, I am his voice”. First of all, this makes it seem like only boys are autistic. Furthemore, Boo Bear has his own voice and can speak for himself. I am not his voice, never have been, never will be. I am his mom, I am an autism mom, I am an advocate, but I am not his voice. Boo has his own voice and he is using it.

Boo has a new communication device, a Nova Chat, that let’s him communicate all sorts of important things. Here are a couple of examples. Yesterday he got off the bus in a great mood. He was happy that I had a Subway sandwich waiting for him. He was so excited that he almost devoured my thumbs along with the sandwich. After he consumed his tasty treat he seemed to be looking for something else. I sat on the couch and waited to see what he would do. In a moment, he brought me his device and sat down next to me. Very politely, he told me he wanted to to to Taco Bell and have a Strawberry Freezie. I did not even hesitate. Gloria, Boo, and I hopped in the car and headed out for Taco Bell. Five minutes later he had his beloved drink. Then, because we were in such a good mood, we headed over to Caribou so I could get a latte and Gloria could get her beloved pup cup.

Later that night Alissa came over to hang out with Boo so we could go to Kung Fu. She decided to take him to Target. In the car she told him she was sorry but their favorite radio station was now only playing Christian music. Boo used his device to ask her to change the station. After their trip to Target Boo piped up again and requested a trip to McDonalds for fries and a Sprite. Alissa happily complied.

So, here are multiple examples of Boo using his voice to get his needs met. He does not need me to speak for him, he just needs me to listen. Autism does not need a cure. Autism needs so much more than just awareness one month a year. Autism is amazing and needs to be recognized and advocated for 12 months a year, not just in April when people trot out blue puzzle pieces. The color blue assumes that only males have autism. The puzzle piece suggests that we (autistics) do not fit in and should be forced to meld into some neurotypical puzzle not of their own design. Red is the preferred color for autism. A rainbow infinity symbol (such as the tattoo on my arm) is the preferred symbol. Autism $peaks does not speak for me or for my family. My autistic children can speak for themselves. Thank you and peace out, y’all.

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.


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.

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