Harriet's Hedgehogs and Autism Advocacy

Friends, it has been a crazy ten days. A week and a half ago St. Paul Teachers called for a strike. Their requests were simple: a cap on class sizes, twenty minute recesses, mental health care for students and a living wage for para professionals. Should be easy, right? Not really. I spent ten days calling and emailing the superintendent of St Paul Schools, the school board, and various legislators. I texted and emailed teachers to let them know that whatever happened I had their backs. Last night we were down to the final hours. Teachers, the union, and mediators had been meeting all weekend, for over 50 hours. Still, the discussions continued. The marvelous Alissa came over the shooed Robert and me out for some dinner. We found ourselves a lovely Mexican restaurant and spent several hours there without phones, devices, social media, etc. We just focused on each other and the lovely food and ambience. For the first time in two years things felt vaguely normal. It was nice just to be off the clock.

On our return home my phone blew up. The strike had been averted and school would be held the next day. I was stunned, grateful, and amazed. All the stress of the last 10 days oozed out of me. It felt good.

Life is a funny mix of the good, the bad, and the absurd. In the last 10 days, I have been able to get the medication I needed at an affordable price. The strike has been averted. When Boo uses Sam to ask me if there is school tomorrow I can tell him yes and he will smile. My heart is with the Ukrainian people as they fight for what is right, for the freedom that is theirs. My dad, at the age of 81, is finally retiring as a neurologist. I cannot attend his retirement party, but I gave $400 in his name to Doctors Without Borders. Every day, I will pray and set an intention for peace. Love can overcome evil, if we all work together. This starts at home. Support your local teachers and front line workers. Do not gripe about the cost of gas, but be glad you have secure housing. Smile at people. Hold open doors. Give people grace. Be good humans. We will talk soon. Peace. Harriet.

Hello, friends. My muse has been fickle lately and writing has been difficult. My musical muse is still around, and practicing lots of Bach, but my writing muse seems to have gone AWOL.

Boo Bear is well and so is Mouse. He has had only one seizure in the last sixteen months. Mouse is loving her classes at the community college and waiting to hear back from the 4 year institutions to which she has applied.

All is not so rosy in the the St Paul School District or in Minneapolis Public Schools. Teachers have called a strike date of March 8. Their requests are simple and reasonable: A cap on class sizes, living wages for para professionals, mental health care for our traumatized students. Superintendent Joe Gothard claims that there is no money for such things and this is not the time to strike. Our state has a surplus right now. I think that money is attainable. There are four meetings between unions and school boards scheduled between now and the 8th. The first one is tonight. I hope and pray that the two parties can negotiate something to give our hard working teachers and our beloved students some much needed help. A strike would break Boo Bear’s heart. The last strike ran into the 2019 Pandemic and he did not set foot in a classroom for nearly a year. Like many students, he went into a deep depression. But, I also 100 % support our teachers. They have worked tirelessly through the pandemic, both online and in the classroom. They are overworked, under paid, and stressed out. We, as a community, need to give them some grace. Please join me in prayer, or sending good vibes, white light, whatever you can muster, between now and the March 8.

My heart is also very heavy today for Ukraine. They are innocent people, trying to live their best lives, who have suddenly been thrown into war. The pictures and social media coming out of that country are devastating. Last night, a children’s hospital had to move all their tiniest patients from the NICU into a bomb shelter. Boo Bear was a NICU baby. It was a terrifying experience. I cannot imagine trying to parent a medically fragile infant in a war zone. No mother deserves to go through this, and neither does her child. At least Mary had a cave and a manger. These children, the most vulnerable, only have a bomb shelter.

I think my muse is absent because she is very sad and overwhelmed. There are bombs in Kiev, a carjacking on my block, teachers worked to exhaustion and beyond, and the vulnerable to care for. Please, please, please, light a candle, say a pray, write your representative in congress, tell a teacher you appreciate her, say thank you to a bus driver. You never know how a simple smile might brighten someone’s day. Be good humans, and we will talk soon.

H

Okay, okay, before you get your panties in a bind and call CPS on me, let me explain. Boo has only a few things he will actually drink. At home he drinks Gatorade. He does not like juice and cannot drink milk. Don’t worry, the rest of his diet is quite healthy. When he is at a restaurant he will order a Coke or Sprite. His very favorite drink is the Strawberry Freeze from Taco Bell. This is a big time major treat. As soon as we pull into the drive through, Boo is on high alert. He knows he has a burrito and a Strawberry Freeze on the way. The Freeze must be consumed in the car, immediately, even if it is below zero outside. He will slurp down that sugary goodness as fast as he can, even though his lips are turning purple, his teeth are chattering and his is convulsively shivering. There is no stopping the man. Today I got curious if the freezes were really that good, so when we stopped by Taco Bell I ordered one, too. I challenged Boo to a drinking competition. Long story short, I lost abysmally. One large gulp of that thing gave me such bad brain freeze I still have permafrost in my cerebral cortex. I delicately sipped it as we drove home. When we pulled into the garage, I had about 95% of mine left. Boo had a few spare sugar molecules left, and a huge grin on his face. Okay, Boo, you win,

In conclusion, Strawberry Freezes are good, but I think I will stick to coffee. Boo is in the other room chortling to himself after having demolished a Burrito Supreme and bested his mother. Anyone else want to challenge him? I am done. Be well folks, get vaccinated, wear a mask, and be a good human.

Despite the frigid temperatures, Boo is living his best life. He is happily chattering away with Sam, enjoying school, snuggling with his dogs. Last night he got home from school, ravenous. He devoured two pieces of pizza and a bowl of mac and cheese. For dinner, we had spaghetti. Half way through his bowl, Alissa called me. She and two friends were having drinks and dinner at a nearby restaurant and wondered if Boo would like to join them? She could be there in 5 minutes. Boo promptly abandoned his pasta dish and let me bundle him up. Alissa came and whisked him away. He returned two hours later in the best mood. He had enjoyed meeting a new friend, having unlimited cokes and tons of French fries. He used his best table manners and fit right in. Using Sam, he was able to take part in the conversations that swirled around him. It was a banner night.

It seems entirely appropriate that Boo would go out for drinks and dinner with a few friends. He is rapidly leaving his teen years. In June he will be twenty. I am training myself to stop calling him a boy. He has left boyhood behind him. He is a young man now. Too often, parents of children with disabilities tend to see their offspring as children, well into their adulthood. I do not want to do this with Boo. He is a young man with a mind of his own and things to say to the world. Thanks to Sam, and his speech therapist, Deanna, he has a way to express himself.

So readers, go live your best life. Even if it dark and cold outside, accept that invitation for dinner and drinks. Wear your mask. Get your shots. Smile at people. Your mask may hide your lips, but eyes smile, too. Pet all the dogs, stay warm, and be good humans.

Happy day after Solstice, y’all! The days will now start to slowly get longer. Bring on the sun! Usually I write about Boo, but today I am doing a shout out to his marvelous sister, Mouse. This fall she decided high school was no longer for her and began taking classes full time at the local community college. She loved it. Unlike high school, students were there to learn. Classroom management was not an issue. People acted like the adults they were. Though she was the youngest in her classes she soon took on many leadership roles. Last week was finals week. She vanished into her attic bedroom and studied for hours, emerging now and again for sustenance and encouragement.

Finals came and went and she felt that she did well. She had one final class of American Government where students could come in to discuss their final grade. She had a 91 % and was happy with that but went in to tell the professor how much she enjoyed his class. While she was there, she told him that the bulk of the grade came from participation. She noted that she had attended every class, joined in all the discussions, and had led many of them. Did this deserve more than a 91%? The professor immediately apologized, said the issue was on his end and he raised her grade to a 94%. I am so proud of her, not just for the grade, but for advocating for herself.

Yesterday, the rest of her grades were published. She earned an A in every class, rocking her first college semester with a 4.0 GPA. She is now taking a well deserved break. Classes start again on January 10. She will be taking College Algebra, Chemistry, Economics, and Drawing. This should keep her busy. We are not yet sure where she will be attending college in the fall. She has been accepted at OSU and received a generous scholarship, so this is a definite possibility. The other colleges to which she applied should answer in the next month. I will keep people posted. In the meantime, enjoy the return of the sun. Be kind to your fellow human. Drink all the coffee and pet all the dogs. Life is good.

Hopefully, Boo is done being poked and prodded for a while. He had a dentist appointment on Tuesday and a fasting blood draw for labs today. Both visits went well. We both adore his dentist, Dr. Rick. He is a very patient man who meets every kid where they are at. He is perfectly happy to give Boo all the time he needs and Boo will cooperate with him. Boo willingly sat in the chair, but when the doctor asked if he could look at his teeth, Boo responded via his AAC “No, I want to go to school.” Dr. Rick said school was great and he loved that Boo loved school, but could he please check out his teeth? After a little negotiating, Boo opened his mouth, the dentist poked around and then said we were good to go for the next six months. Whew! I will be so sad when Boo ages out of his practice, and I left him a stellar review.

We have gone to the same pediatric clinic since Boo was born. Though his personal doctor is great and loves working with differently abled clients, I have always done a slow burn at the nurses, who tend to treat Boo as if he is either deaf, or piece of furniture. We had to wait a while in the lobby, surrounded by batches of rug rats. Boo kept giving me the side eye, as if to say, “Why are we sitting here with all these little gremlins?”. Eventually we were called back. As usual, the nurse spoke only to me. Via Sam, Boo said, “Hello, how are you?” Literally, the nurse jumped and then stared at him. Then she grinned and said, “That is such a cool device!” I agreed with her and told her it was a total game changer for how Boo can communicate. She asked him if she could draw some blood. Boo gave her an emphatic “No!” I told him it would be just a quick poke and then we would go get a juice box. I held his arm and we practiced deep breathing while she drew the blood. The whole time Boo was saying , “No.” When she said she was all done, Boo said “Juice Box.” I agreed that a juice box was definitely in order and we high tailed it out of there. We went to Starbucks and I got him a juice box and me a latte. Then we just hung out for a bit to debrief. When he seemed ready, we hopped back in the car and headed for Focus Beyond. At school, he never looked back for me. He grabbed Sam and his bag and headed for the door in a gaggle of teens, perfectly happy.

I am in awe every day at the voice an AAC has given my son. He is able to clearly state what he likes, what he doe not like, and what he wants to do. He and I are definitely getting a lot of pleasure at the double takes people give when then realize they have grossly underestimated him. So, Boo is now at school. I am mass producing Christmas cards, fueled by some very dark coffee. The dogs are asleep in their patch of sun. Life is good. Look for miracles. They might just appear in the form of a gangly teen with an AAC.

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.

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.

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 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.