Sam is back, life is good!

As many of you know, Boo Bear uses a communication device to speak. For some reason I have dubbed his Nova Chat as Sam. Sam goes everywhere with Boo and lets him tell the world exactly what he is thinking. Two weeks ago I went to get Sam off his charger and he was flashing a strange blue light. Apparently, he thought he had been hacked and refused to turn on or reboot. I called Heather, our local representative, but she said this was beyond her scope and to call Saltillo, the Nova Chat company. They were unable to do anything over the phone but said to send it back to the company, they would put a rush on it and have it back in Boo’s hands asap. Thus began a very long two weeks. I have to hand it to Boo, he was a trooper. He made do with his old device, which is crude and clunky and soldiered on through. But, it was rough.

Thursday, September 9 was his first day of school. He was so happy to get on the bus, but we still did not have Sam. Then, I received a notice from Fed Ex that they had tried to deliver the package but no one was home. Hmm, Robert was working in the living room all morning, he would have heard them. They made no attempt to deliver the package at all. I spent a fraught day trying to track down Sam. The local office could not help. I did learn that Fed Ex drivers are independent contractors and notoriously unreliable. I also learned it is impossible to get Fed Ex to answer the phone. Trust me, I spent hours. The only good part of the day was that Boo was happy to be in school and I figured out how to finally get his overdue meds from the pharmacy. That was another cluster, but one I could solve with a few well placed phone calls.

Friday morning I put Boo on the bus and went for a run. When I returned I had a text from Fed Ex saying the package was at the local store. I bolted over there and picked it up. Sam was home! Sadly, he was not charged and had not retained the settings I had put in, but no matter. I gave him an hour to charge and then took him over to school to give to Boo.

Normally at the end of the day, his teacher puts Sam in Boo’s backpack so he won’t accidentally leave him on the bus. Today was different. The bus pulled up out front and there was a long pause as I waited to Boo to get off. He finally appeared at the top of the stairs, clutching Sam with a death grip. He refused to look up at me or down at his feet on the stairs. Somehow or other I got him off the bus and into the house, still clutching Sam. He then proceeded to chat nonstop for the the next half an hour. Eventually he would lend me Sam for brief intervals so I could put his data back in the system. Later on, Robert and I coaxed him out for a walk so I could charge Sam some more. Boo continued to commune with Sam for the rest of the night, even bypassing his favorite treat of Pizza Luce. He went to bed tired and happy around ten. It is now 9:30 the next morning and he is still deeply asleep. Sam is fully charged and ready to face the day. So, all a two day period, Boo got Sam back, got to ride the bus, and got to go to school. A banner 48 hours!

On this day of 9/11, the twentieth anniversary of one of the worst days in our nations history, I pause to reflect. Boo was not even conceived when the Twin Towers fell, neither was his sister. 9/11 is something they learn about in history class. Our last soldier has just left Afghanistan. It has been a long twenty years. I reflect on what I have lost and what I have gained in the last two decades and I pray for peace and unity among my fellow humans. Let us do unto others as we would have done unto ourselves. Peace, y’all, and be good humans.

Boo Bear and the Muse

My muse and Boo Bear keep funny hours. She woke me up at 2:30 this morning with an idea of something to write and refused to go back to sleep. Boo Bear followed suit soon thereafter. So, here we are. It is 5:47 am. The dogs have had breakfast and crashed out again. Boo is making happy banshee noises in his room. I have coffee. Life is good.

Boo has had an amazing summer. He absolutely loved his 6 weeks of summer school. He got his very own communication device and is chatting up a storm, mostly about places he wants to go and things he wants to eat. Summer is slowly winding down. He goes back to school in 15 days. He tells me multiple times a day that he wants to ride the bus and go to school. The love affair with buses that began in 2004 continues. We have spent a fair amount of time at Gillette Clinic this summer doing PT and OT. Boo loves PT. The therapist understood him and his needs deeply and intuitively. Boo craves deep pressure. This is probably one of the reasons he walks so much. So, we began working on other exercises that will give him the proprioceptive input he needs, but burn fewer calories and hopefully put a few pounds on his beanpole frame. She had him climbing through obstacles courses, walking flights of stairs, giving him tons of squishes, and to his incredible delight, letting him ride a recumbent tricycle. Boo immediately fell madly in love with this vehicle. Imagine a recumbent trike, big enough for a six foot tall man/child, that has a rudder and brake on the back so his helper can help him steer or slow down. We have done so many laps around the clinic and parking lots this summer. Boo Bear grinned like a madman the entire time, and the rest of every day that we rode. Next week we have an appointment with the Recreation and Leisure department to see about getting him a trike of his own. This make take some time to get, but the wait will be worth it. His other new PT device is a trampoline. All summer long Boo has been using his AAC to tell me he wants to jump on the trampoline. The other day a friend of mine mentioned that her kids had outgrown their trampoline and it was looking for a new home. Last weekend the tramp made the journey from their backyard to ours. Boo was stunned. He is still very cautious about it. He will sit on it and let me bounce him, or walk around on it holding my hands. His PT says these are all good things. He is getting tons of good sensory input just from being on the trampoline, whether he chooses to bounce or not. I have to confess that I have always secretly wanted a trampoline, so I am having a good time, too.

I feel so incredibly blessed by the wonderful folk at Gillette that understand and can meet my son’s needs. I am deeply grateful to Deanna Morrow, his speech/language therapist, who knew that Boo had the ability to communicate if he just had the right device. I am excited to see what this school year will bring. Students will be back in the building 5 days a week, wearing masks. Students at Focus Beyond, where Boo started last year, are going to be able to go out into the community and work at various job sites. I think this will be a year of great opportunities.

Thank you to all of you who follow Boo Bear on his adventures, who cheer him on, who believe in him. As a public service announcement, please get your vaccine if you have not already done so and wear a mask. You are not only helping yourself, you are helping your community as well. Eighteen months was a long time to be locked down. Let’s not do that again. Peace, y’all, and be good humans.

Back to Autism Advocacy

Thank you so much to my readers for your kind words in the last week. It is not a week I would care to repeat, but we got through it. Despite the losses, Boo Bear is thriving. He started PT at Gillette Children’s yesterday and loved it. Kristen, his therapist, immediately recognized his need for deep pressure and went to work on all of his joints. He liked it so much he climbed into her lap. She asked it he were always so loving and I said yes. He is my gentle giant. Boo and I do a lot of walking. This is great but it burns a lot of calories, which my skinny guy does not have so spare. Kristen wondered if the walking is providing him much needed sensory input and if we can substitute some of the walking with more passive, deep pressure activities that will fill that need but not burn as many calories. We spent a wonderful hour with her and left with a ton of great ideas. Deep pressure, massage, joint compression are all things we routinely do with small children on the spectrum, but we seem to forget that they do not outgrow these needs as they become adults. Yesterday was a good reminder for me that though Boo is 6 feet tall and 19 years old, he still has the same sensory needs that he did as a toddler.

On the communication front, things are going wonderfully well. Boo now has his own device, a Nova Chat. The loaner device is going back to the factory to be reset and then sent out to another budding communicator. Here is an example of how Boo has been using his device. We take it everywhere we go, including when we go grocery shopping. I make him ask for every desired item instead of just letting him pull it off the shelf. He knows that at the end of every successful grocery run we will stop by Starbucks for his beloved juice box. The other day we finished our grocery shopping. Boo told me he wanted a juice box so we got in line at Starbucks. While we were in line it occured to me to check in with him and see how he was feeling, rather than just having him tell me what he wanted. I asked him how he was feeling and directed him to the appropriate page. I was expecting him to tell me he felt good, or bad, or whatever. Instead, he told me he was thirsty! “Of course you are thirsty,” I said, “Let’s have a juice box.” Boo looked very pleased with himself. He is learning to say what he feels, rather than just asking for desired items.

The Nova Chat allows the user to set the amount of pictures on the screen and from the pictures create sentences. Right now I have it set so that there are twenty pictures per screen. There is also an option to go up to 42 pictures per screen. I am going to begin using this option while Boo is on break from school these next few weeks, just to see how he does with it. The nice thing about the device is one can switch options with ease. If Boo is having a good day and is really connecting, I can challenge him with the 42 picture screen. If he is having a harder day I can step back and use the twenty picture screen, which he has been using like a champ since early this spring.

Once again, thank you all so much for your kind words and messages this past week. It was meant so much to me. Be good humans and I will keep you informed of what Mr. Boo is up to. Peace.

Goodbye, Sweet Gracie

Normally, this is a blog about autism advocacy, not a eulogy section for pets, but this is not a usual week. I have had the honor and privilege of knowing and working with Fourwinds Amazin Gracie for over 15 years. She was the beloved Australian Shepherd of my best friend Myra Fourwinds. This morning, Myra and I made the heart wrenching decision to help Gracie cross the Rainbow Bridge. She was only sick for a very short time. A week ago she was begging me to take her for walks and waltzing around the room at Myra’s 69th birthday party. Truly, she was the belle of the ball. She loved Myra, agility, Agile Canines, my husband and me, and weed. She hated going for rides in the car and would shake and drool like crazy. I still cannot believe that she is gone. Her fur is still on my clothes. Her nose prints are still on my car windows. She fills my heart. She leaves behind a host of heart broken, adoring humans. I do not have the right words to pay homage to this dog. She was the littermate to my heart dog, Rosie. She was Myra’s everything. Please hug your pets a little tighter tonight. Take them for a walk. Buy them treats and silly toys. They are only with us for the briefest of times. All my love to Gracie and to Myra. I love you both fiercely. Harriet.

Farewell, Sunshine

Usually, I write about Autism and Boo Bear, but today is a little different. Judging from my blog name, you know that autism advocacy and hedgehogs are two things very close to my heart. Sunshine was my very first hedgehog. Hogs generally do not live very long lives. Three or four years is quite old, Sunny was almost five when she passed last night. I took her in to the emergency vet six days ago because she was having a hard time walking. The vet was very good with her but the news was not good. She had (they think) Wobbly Hedgehog Syndrome, a mass in her uterus, and had lost a lot of weight since April. I took her home and decided to make her as comfortable as possible in her remaining days. She was still very happy and cheerful. When she heard my voice she would come to the side of her habitat to see me and get lifted out. She had the most adorable clucking and purring noises she made when she was happy. As far as I could tell, she really was not eating or drinking at all. Last night both Sunny and Emily Rose and I spent hours on the couch, cuddling and watching the Olympic Games. She stretched out on my lap and happily accepted tummy rubs. When I went to bed I put her back in the warmest part of her habitat and made sure she had food and water within reach. When I woke up this morning she had passed in her sleep. I wrapped her in her favorite piece of fleece and buried her under my ferns and hostas. I hope it is a peaceful sleeping place for her. I probably will not get another hedgie immediately. I got Emily Rose right after Champ died because Sunshine seemed lonely. She bonded immediately with Emily and the two got along famously, even sharing the same snuggle sack. Emily Rose is much more independent than Sunshine was. She will let me handle her but has no real time for snuggles. I do not think she was as bonded to Sunny as Sunny was bonded to her. I will keep a careful eye on her in the coming weeks. If she seems to need a friend I have a competent breeder to call. In the meantime, hug your pets a little closer, your furry ones, your feathered ones, your spiky huffy ones. I miss you Sunshine, fly high little hedgehog.

Thing To Talk About

Mr. Boo celebrated his 19th birthday in fine style. He got some fancy socks and shirts and went for lots of rides in the car to his favorite places to eat. We got tacos from Taco Bell, a juice box from Starbucks, fries from Wendy’s and a freezie from Super America. He had been telling everyone for a week, via his device, that he had a birthday coming up. It was a very good day.

The last two days have showed some interesting developments in language. Boo is very good at picking up on my mood and various vibes and tensions in the air. Two nights ago we were sitting in an endless line at a drive through. In the past, Boo has used his other devices to pseudo swear but I had not heard him do this with his current device. Suddenly, out of the backseat came a voice that clearly said, “Oh, bucket!” I flipped around and looked at him. “Boo Bear, did you just drop the F bomb?” I asked. He respond by making his device say “Bucket, bucket, bucket!” “You are exactly right”, I crowed, “Bucket all!” Then I bought everyone an ice cream to celebrate.

Last night I went out for a run and Boo was preparing to go out with Alissa. She was looking for his wallet which usually resides in his backpack. She could not find it and asked Robert if he had seen it. Boo made his device say “Backpack”. “True”, Alissa said, “But it is not in the backpack, I can’t find it.” “Bag” said Boo Bear. “Bag, bag, bag.” Robert looked around and saw my purse on the table, looked in it and saw the wallet! Everyone told Bo0 how proud they were of him and he went merrily off with Alissa. When I got home he told me “Backpack, bag, proud” several times. Alissa provided me with the backstory and it all made perfect sense. I was quietly stunned.

These events may be small potatoes to some people, but in the life of Boo and his family and caretakers they are huge. After 19 years of not being able to express himself, Boo is finding that he has a lot to say, and we are hanging on every word. Thanks for listening. Be good humans, peace y’all.

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.

Communication

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.