Burnout is Real

I absolutely adore Boo Bear’s school, Focus Beyond Transition Services. They serve students with varying disabilities from the ages of 18 to 21. This is Boo’s second year attending Focus. He has a wonderful teacher, Rosalind, and a phenomenal SLP, Deanna. Deanna was the one who helped Boo find his voice at at 18, via an AAC. I will forever be in her debt.

As I said, these are amazing teachers, but I worry deeply about them. They are beyond tired. They are beyond over worked and under paid. In normal times, Focus Beyond and her sister school, Bridge View, never had more than 8 students in a class. The students would have one lead teacher and at at least 3 para professionals. Other instructors floated in and out during the day. The Pandemic ended all of this.

Paras do not get paid nearly enough, but they are the reasons that schools function. They are the unsung heroes of the special ed world. At present, Focus has up to 10 students in each class and the bare minimum of paras. Students are disregulated from having been out of school for nearly a year. They are relearning the most basic of things; how to sit in a desk, act appropriately with peers, not to mention the academics. So, teachers and paras are exhausted.

Last night the school board voted to extend the winter vacation. I was really hoping that they would extend the break by 2 or 3 weeks. This would give (hopefully) Covid numbers time to die down, and teacher staff and students time to decompress. Sadly, they did not get 2 or 3 weeks, they got 2 extra days off. I hope it helps a tiny bit. Teachers and paras deserve so much more. They do not work just a 9 month year. During the summer they are either teaching summer school or taking classes themselves. There are three months of the year that they are not drawing a paycheck. Many work side jobs just to stay financially afloat.

If you do one thing today, please thank a teacher or a para. Write a little note to your kid’s teacher saying thank you. It will take you all of 2 minutes of your time, and it will make her day. I have been out of the teaching world for 6 years, but still hang onto the little notes and cards that my students and their parents gave me.

Mr. Boo loves his teachers and paras with a fierce, simple love. He loves them simply because who they are and what they do. Please thank a teacher or a para. Peace, y’all.

Grateful

I am continually amazed as I watch Boo Bear communicate with his AAC. The other night I was sitting on the couch reading. He brought his device over and sat down next to me. He said, “Mom”. I said “Yes?” He said, “Hi.” I said, “Hi”. This is one of the first time he has interacted with me just to check in and say hi. He did not want anything to eat or drink. He did not want to go anywhere. He just wanted to say hi and sit next to me. He continued to mess around on his device while putting a hand on my leg. I continued reading. It was a very quiet moment. One that would be missed by the casual observer. But it is a moment that I felt deep within my core. I hold no stock with “theory of mind”. Boo Bear knows who he is as a person. He knows who I am as a person. He knows how to reach out and show love. He will never go for the big demonstrative moments, but he lets me know in the little ways that he is right there, connecting with me. As I keep telling teachers, therapists, and other parents, always presume competence. I stand back and watch in awe as my son continually surprises me with his insights and comments. May you have a blessed Thanksgiving weekend. Be good people. Peace, y’all.

Living His Best Life With Sam

Sam, Boo’s communication device, goes everywhere with him. Last night Alissa took them to a men’s Gopher basketball game. Boo had the time of his life. Originally, they had tickets in the nosebleed section. Boo was having problems with the steep steps so Alissa asked if she could buy seats closer to the court. The sweet manager suggested they sit courtside in the handicapped section as no one else was there. Boo was utterly entranced by the game. He loves watching live basketball. He used Sam to request drinks, popcorn, candy, and trips to the bathroom. When the students sung the gopher Row the Boat song, Boo made Sam say “rowboat”. There were college students sitting directly behind them and they were very curious both about Boo and Sam. Boo had a great time hanging out with them. Alissa was so thrilled with his communication progress that she totally spoiled him with treats and drinks. Late at night they returned home from the game. Boo had an ear to ear grin on his face. I have not seen him so happy in a long time. Pre- Covid, Alissa used to take him to the women’s basketball games at St. Kates. He was their biggest fan and became something of a pet of the girl’s team. It has been two years since he had been to a live game and he was thrilled to be back. Basketball season is just getting started and I am certain that Boo and Sam will be at more games. If you see them there, stop and say hi. Today, Boo slept late, requested a sandwich from Subway and is now jamming out to Curious George. Life is good in the Herndon household. Be good people and we will be in touch.

The Return of Sam!

The last few weeks have been challenging, to say the least. In one 48 hour period, the washing machine, my laptop, and Boo Bear’s device (otherwise known as Sam) all went belly up. This was not good. The washing machine was the first to get fixed, it just needed a new pump and copious amounts of dog fur to be cleaned out of the drum. In the interim we used Suds America, who will charge you by the pound for your laundry, wash it, dry it, fold it (they even folded my sports bras, I had no idea a sports bra could be folded!), and return it to you in a few short hours. The laptop and Sam took more time to heal. The laptop needed a new battery and it took over 2 weeks for it to show up in the mail. Sam was also gone over 2 weeks. He thought he had been hacked and hunkered down and refused to turn on. Back to the factory he went to get straightened out. Thankfully, Sam is under a 5 year warranty. Boo Bear has a Sam like device he can use at school, but at home he was basically mute. He was a very good sport about it, but it had to have been frustrating for him not to be able to express himself, other than using a few signs and basically leading me to whatever it was he wanted. Sigh.

The week turned for the better when the laptop battery showed up and Sam returned. He had been put back to all of his factory settings , so there was nothing personal left on him. I will have to rebuild from scratch, to get the voice right and put in Boo Bear’s favorite items. I have not had a chance to do this yet, as Boo Bear won’t let go of Sam! I shall have to wait until he is sleeping. But, Boo is thrilled to have his voice back and it is a joy to hear him speak.

Another good, actually, great, piece of news is that of October 15, Boo Bear is one year seizure free. We celebrated with his favorite Strawberry Freeze from Taco Bell. I feel I should bake a cake for the occasion, but he really does not like cakes. He will, however, happily accept tacos. I announced this news on Facebook, and thank you so much to everyone for sending their love.

Boo’s sister, Mouse, is also charging along through life. She recently decided high school was not challenging enough and is a full time student at the local community college. She loves it! This week we submitted 9 applications and essays to various colleges and universities around the country and applied for financial aid. Now we sit back and wait. In two weeks we are flying to Stillwater, OK to visit the University of Oklahoma, where my cousin Paul went to school in the 1970s. It is their homecoming weekend and Paul will be joining us. Since I have not left the Twin Cities area since before Covid hit, I am very excited to be getting out. Robert will hold down the fort with Boo and the animals in our 3 day absence.

Thank you so much to all who follow this blog or reach out to us on Facebook. It really does make us feel a part of a thriving village. Be good humans and I will write more soon.

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.

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