Harriet's Hedgehogs and Autism Advocacy

This is Boo Bear’s newest sentence. For the past few days, he has been telling me that he wants to read a book. This is something new. As a baby and toddler, he had tons of board books and picture books. He loved them. As he grew older, he seemed to have lost his interest in literature. I knew he knew his alphabet from a very early age but could not determine if he could read of not. On one of his report cards his teacher noted that he could easily match words and pictures. This told me that he could read, to some extent. In 7th grade his class read the first Harry Potter book aloud. He listened attentively and laughed in all the right places. This told me that he could take in what was being read to him. At home, however, he showed no interest in books at all. About a week ago he started using Sam to tell me that he wanted to read a book. I looked around the house, but could not find anything that would be high interest but easy to read, or something that could be read in small chunks at a time. I let this thought simmer in the back of my brain.

Yesterday was day four of his spring break. It was rainy, cold, and gross outside. Boo kept telling me he wanted to go to school and see his teacher. He wanted to ride his bike. In other words, we needed to get out of the house. It was lunch time, so we headed out. I had asked him several times where he wanted to go for lunch but all he would tell me was that he wanted to see his teacher, Rosalind. I headed for Caribou to pick up a latte. To get there we had to pass a McDonalds. Boo’s eyes lit up. I directed him to his restaurant page, and he immediately chose McDonalds. As I pulled into the drive through window he repeatedly kept saying, “Burger, burger, burger.” We got a burger, fries and drink to go and headed over to HarMar Mall to eat our lunch. He downed the lunch in record time flat. The mall was full of older people out walking so we did a few laps with them to burn off some energy. After a while we sat down just to people watch. I asked him if he wanted to read a book. Boo replied, “I want to read a book.” “Okay”, I said, “Lets’ go buy a book to read.” His eyes got big, and he followed me into the bookstore. We went into the kid’s section and began wandering. I asked him if he wanted a funny book or a scary book. He said that he wanted to read a funny book. An employee stopped by and pointed us in the right direction. With her help, we picked out two funny books, high interest, medium reading level, and a book of mad libs. We went to check out. I handed the cashier the books and prompted Boo to scan his card. He did, we put the books in the bag and headed out. He seemed very happy.

Back at home we tried one of the mad libs and he seemed to think it was very funny. A bit later, Alissa came over to take him swimming and off they went. This is an entirely new development. I really had no sense that Boo was interested in books, though the rest of the family reads avidly. I am going to set a small amount of time aside every day just to read with Boo. I will also ask his teacher what books he is drawn to in school and may send in the mad libs so he can share them with his class.

Yesterday I said all people have the right to meaningful communication, whether it is verbal or AAC. Today I am going to add on to this and say that all people should have access to literature. Without his AAC I would never have known that Boo wanted to read a book, let alone a funny one. Without his AAC I would not have known that he wanted to burger from McDonalds for lunch. Without his AAC I would have very little idea of what is going on in that sharp mind of his.

It is 5 am. It is pitch dark outside. I have no idea why I am even awake, or why I woke up, wide awake, at 3:30 am. So, I am sipping coffee with my dogs and hedgehogs around me. I am pecking away at my blog. The sun is finally supposed to come out today and hopefully Boo can get out on his bike. We will take some time to read a funny book. We will enjoy our day together. Monday we will return to the regular routine of busses and school. But, for now, we will just enjoy being together. Be a good human, drink lots of coffee, read funny books, and we will chat again later.

Hello! For those who do not know AAC means Augmentative Alternative Communication. In the case of Boo, his AAC is his device we named Sam. An AAC can be anything that helps further communication. It can be as high tech as Sam or as low tech as PECS (picture exchange communication system). I have had more than a few parents tell me that their non-speaking child does not need an AAC because they can usually figure out what their child wants. Hmmm, having a non-speaking child gave you the ability to read minds? I don’t think so. Follow me for the rest of the story.

Boo is on vacation this week and having a lovely time. He would like the sun to come out more so had can take his new adaptive bike for a spin. Yesterday we went to Target to get Easter basket supplies for friends and he got a few treats of his own. I picked up some fried chicken from the deli, as that is one of his favorite snacks and we went home. Once home, I got him set up with Sam, his iPad (he loves to watch Sid the Science Kid) and his snacks. I went into my area to do some work on my laptop. A little bit later Mr. Boo came in with Sam. He began patting my arm to get my attention and then dropped Sam in my lap. When I asked him what he wanted he made Sam say. “I want to go Taco Bell. I want to drink a Strawberry Freezie.” This is the first time he has ever sought me out and communicated with me. Most of the time when Boo is speaking on Sam, he talks and just assumes that I am listening. His speech therapist has been saying that he needs to understand that communication is a two-way street. He needs to get the attention of the person he wants to communicate with first, then speak. Yesterday was the first time that he ever did that. Obviously, I stopped what I was doing, said, “You said you wanted to go to Taco Bell for a Strawberry Freezie. Let me get my keys and we will go.” So, off we went. He was very happy and I was ecstatic.

So, being able to guess what your non-speaking child or young adult wants is not enough. Boo had had an outing, lots of positive interactions, and was all set up with his iPad and snacks. Taco Bell had not even entered my mind, but it had entered his. So, he decided to trot over to me and make his needs known, and it worked! Now, I can hear the Karens in the background saying, “You can’t give him everything just because he asked for it.” My answer to that is “Why not?” Boo asks for very little. He does not care about fancy clothes or cars or how he looks. He cares that people listen to him and treat him with respect. This was the first time he had ever come to me with a certain request. It only took 15 minutes out of my day to run him over to Taco Bell and fulfill his request. Easy peasy.

All people want to communicate. Some communicate verbally, some use ACC. All attempts at communication should be considered valid and should be listened to. You may know your child or young adult better than anyone else, but you cannot read their mind. I am not a magician, I am not a mind reader, I am mom. Boo is a budding communicator. It is my job to listen and continue to conversation. Thanks for dropping in to read.

Yesterday was World Autism Awareness Day and I had absolutely nothing to say. I was a bit overwhelmed by all the puzzle pieces and autism warrior moms blogging about their kids. It was a bit terrifying. Let’s get a few things straight. Having a child with autism or being an adult with autism is not like going to war. We do not need any warrior moms, we are a peaceful people. I call myself an autism mom because I am a mom with autism with teens with autism. But, this is not my whole identity. I am autistic, but I am also a musician, a martial artist, a wife, a care taker, a blogger, an ultra marathoner. My life is not defined by the fact that my teens are autistic. Furthermore, we are not “affected by autism”. We are not “living on the spectrum”. We are autistic. Plain and simple.

As to puzzle pieces. The puzzle piece is pushed heavily by Autism Speaks, a hate organization that wants to “cure” autism and end it forever. That would mean no more Temple Grandin. No more Boo, no more me, no more Mouse. It would mean I would lose scores of friends. Thanks, but no thanks. We are not missing puzzle pieces. We are whole, complete people. We do not want to fit into your neurotypical framework. The preferred autistic symbol is the infinity symbol in rainbow colors. I have this as a tattoo on my right arm, with the words “Define normal” written over it. This tattoo never fails to make me smile. I am proud of it.

The color blue. This is also a misnomer. “Light it up blue” only recognizes the males on the spectrum. There are tons of females who are also autistic. Those who are particularly not diagnosed are women of color. Autistics prefer the colors red and gold, not blue. And, we all deserve a place at the table. This means autistics of all shapes, colors, sexes, binary, non binary, trans. The list goes on and on. We do not “light it up blue”. We are proud, diverse rainbow of people.

So, those are my thoughts for the day. Spring is coming. I saw a robin yesterday. No flowers yet, but they will come soon. I took Boo out on his adaptive bike yesterday and he had a blast. He is on spring break this week, so many adventure await. Peace out, be good humans, and look for rainbows.

Masking is a very common word in the ASD community. Basically, we all mask to survive. For those of you who are not on the spectrum (sorry!) masking is when an autistic person tries to blend in and act neurotypical. For the record, it is very hard work. I don’t mask when I am at home because I am surrounded by my autistic family. It is one of the few places I feel safe. When I am out in public, I mask. This means I try to make eye contact (I may actually be looking at your ear), I stand up a bit straighter, I try very hard not to stim or hum or wiggle my fingers, and I am hyper aware of my surroundings. I could do this a lot when I was younger, and before I was diagnosed. Now, I find my endurance for such things is waning, and I tend to care less about how I appear to others. My daughter, at age 17, has great endurance for masking, surrounded all day by other college students, but it comes at a price. At the end of the day, she needs to retreat to her attic loft and not interact with anyone for several hours. Boo masks to a degree. When he is out with Alissa and her friends, he tries very hard to come across as a typical 19-year-old. He eats neatly, uses good manners, joins in the conversation using Sam, his AAC, and his stims lessen noticeably. Though he greatly enjoys such outings, he usually needs a good 12 hours of sleep after they are over.

I have had people ask me, “How do I know if my child is masking?” Easy. If their teachers say they are perfect at school but they are coming home and exploding, you can bet your last dollar that they have just spent the last 8 hours of their day masking. They put up with other students, noise, confusion, awkward social situations, deadlines, etc. It comes out as what I call the coke bottle phenomenon. Imagine a bottle of coke sealed up tight. All day long this bottle is jostled about, bounced, and shook. At the end of the day this poor exhausted bottle comes home, the cap comes off, and it explodes everywhere. It had to wait until it was in a safe place to decompress, and home is where we all see the good, the bad, and the ugly. So, if your child’s teacher says s/her sees no problems at school but your kid is a hot mess at home, your child is masking.

So, how does one prevent the coke bottle phenomenon? Sensory breaks! Let the kid wear ear defenders, chew gum, use fidgets, have permission to leave the classroom for a quick break if things get too intense. Another big relief would be less homework. An adult works all day and expects to have the evening off to unwind. Students work all day and then are expected to do hours of homework after the last bell rings. Also, don’t push your kid to be social after school. They are probably exhausted. They may not want to get together with a friend or play on a team. They may just want to decompress. Signing them up for a sport they don’t want to play “for their own good” will only backfire. They need time to take off their mask and just breathe.

Now, I want to change the subject to a different kind of mask, the kind we were all wearing in public until a few months ago. You know, that mask, the one that covers your mouth and nose. Mask mandates have gotten more lax in the past few weeks, but the pandemic is not over yet. I am urging people to continue to social distance and to continue to wear a mask in public. During the pandemic, despite being super careful, my family caught Covid twice. Other than that, we have been completely healthy. No colds, no flu, no nothing. It was very nice. When the mandates loosened up, both Boo Bear and I got sick. I was miserable, but he was completely down for the count for a week. Illness is not the only issue, when he is sick, his seizure activity kicks in. So, not only is he sick and miserable, his epilepsy acts up. If you have never seen your child have a seizure, consider yourself blessed. They are terrifying to watch. The eyes roll back, the breathing stops, the limbs contort and writhe. As a parent or a bystander, the only thing you can do is protect their head, and time the length of the seizure. If is lasts more than a couple minutes, administer rescue meds. As the person comes out of the seizure, assure them that they are okay. Tell them what happened. Help them to a comfortable place, loosen their clothes and sit with them for a while. In Boo’s case, he will need to sleep for a good 12 hours just to reset his brain. Often after a seizure one will have full body soreness, as if they just ran a marathon. Their memory may be disrupted, and they may have obtained some physical injuries as well. Seizures are hard on the body. You can help prevent Boo and other persons with epilepsy from having more seizures if you wear a mask and help slow the spread of germs. It seems such a little thing to ask. Could you do it?

So, that is my take on masking, both psychologically and physically. When my teens and I go out in public we wear both kinds of masks. We wear a mask when we try not to look autistic. We wear a physical mask to prevent the spread of disease. Telling someone that they are a “sheep” for wearing a mask is never cool. They are wearing it to protect themselves and those around them. Please keep your comments on my mask to yourself. It is not hurting you or anyone else.

In a few minutes the bus will pull up and Boo Bear will arrive home from school. He will take off both his masks, physical and psychological, and rest up from his busy day. Blessings to his teachers who do not assign any homework. He is free just to be his own little person until the next day rolls around. If you can come home from work or school and only have one mask to take off, consider yourself lucky. If your child is coming home from school and exploding, consider what can be done to make his/her day easier out in the real world. Thank you for listening. Wear a mask, get the vaccine, and be good humans.

Hi friends, for the last few days Boo Bear has not been so perky. He has cold symptoms, no energy, and no appetite. He has not been to school since Monday. Today we went to see the doctor. Of course, Sam, his AAC, was with us. In the past, even the most well intentioned of doctors have been unable to really connect with Boo, they always defer to me. They don’t ask him how he is feeling or what hurts. It reminds me a bit of a veterinary exam. Today was different. We had an older, very patient, doctor who gave off an aura of kindness. Boo is good at picking up vibes off people and noticeably relaxed around her. Using his device, he told her that his tummy hurt, and he did not feel well. Instead of asking me all the questions, the doctor began talking to him. She explained everything that she was going to do and was very careful. Nothing really turned up. Ears, nose, throat, temperature were all normal. His weight was startling low for someone of his height, but no lower than it had been last summer. She decided to draw some blood. Boo was a very good sport during the blood draw but did tell the nurse that he was sad. He did not, however, pull his arm away. After that, we sat for a while, waiting on lab results. While we did, Boo entertained himself by naming all his favorite foods. Eventually, the doctor came back in. Boo immediately told her that he wanted to leave. She told him that his blood work was perfect, to drink lots of Gatorade, and he was free to leave. She told him to come back if he still felt sick in a few days.

Boo Bear and I took our leave. We picked up a coffee for me from Caribou (extra expresso) and a freezie and a burrito from Taco Bell for him. To my delight, he immediately dove into the freezie. It probably felt good on his throat. By this time, I was developing a sore throat and figured that he had much the same. At home, he nibbled away at most of his burrito before curling up on the couch to watch PBS kids. There are few things is Boo’s world that cannot be fixed by watching a few episodes of Curious George.

This outing made me happy for two reasons. One, whatever Boo has is a virus and will pass. We just need to keep him hydrated and fed. Two, he was able to communicate with the doctor and the doctor responded to him as the young adult that he is. I have heard many parents of non-speaking young adults say that they do not see any reason for their adult child to have an AAC. They claim they can usually figure out what s/he wants with just some guess work. But guess work is frustrating for all concerned. The parent may not know what their child wants, and the child many not get what they want or need. For those outside the family, it is almost impossible to figure out what the non-speaker wants or needs. An AAC gives the user agency. With Sam, Ravi was able to tell the doctor what was wrong, and that he did not appreciate a blood draw. She was able to communicate with him, instead of me, which is appropriate since Boo is nearly twenty. An AAC matters in other ways, as well. The other day I was going to take Boo to Taco Bell. The plan was to get a strawberry freezie and a burrito. Boo had other ideas. Using his AAC he was able to tell me that he did want to go to Taco Bell, but only for the freezie. After that, he wanted to go to Culvers for chicken strips. I complied and he was happy. For a non-speaker without an AAC this could have been a trip of utter frustration. The young adult might be happy with the freezie, but turn his nose up at the burrito, even though he had very happily eaten one the day before! All persons have their likes and dislikes, autistics included. All persons deserve to be able to make their choices known and understood. This is a hill I will gladly die on. If a child or adult is non-speaking, find a different method of communication. This can be PECS, an AAC, a spelling board, sign, the possibilities are endless. Just guessing at what your budding communicator wants is not enough, they have to have a voice and they have to have agency.

So, now we are home and recuperating from the morning’s adventure. Boo looks a little more perky and will probably go to school tomorrow. He is now watching Sid the Science Kid. Sam is sitting next to him, silent for the moment, but ready to spring into action at any time. The dogs all have bones. Life is peaceful. Be good humans, we will talk again soon.

This has been a good week for Mr. Boo Bear. Sam, his communication device, was back at the factory for two weeks. He had a loaner device, but it did not work as well, had fewer options, and the battery life was terrible. By the time he got home from school, the battery would be dead and take the evening to recharge. This left Boo largely mute. He relied on a few signs, and basically leading me to whatever it was that he wanted. It felt like we had taken a huge step back. Happily, Sam arrived by Fed Ex while Boo was in school. I had it charged and ready to go when Boo got off the bus. He greeted it with happy squeals and spent half an hour talking about everything under the sun. He told me he wanted Gatorade and popcorn. He wanted a trip to Target. He wanted to watch PBS Kids. In short, we were thrilled

For Christmas, Boo got an adaptive bike. It has been sitting in our living room for three months because all the sidewalks were covered in a thick blanket of ice and snow. We finally had a good melt and the weather got tolerable. On Sunday, Peter and I took him out for a ride. The great thing about the bike is that it has a steering wheel and brake on the back, in case Boo gets too enthusiastic, or decides to head into traffic. As it was, he needed very little help, maybe a little push on the uphill, but he was able to pedal and navigate all by himself. It was a beautiful day for a ride, and he had an ear-to-ear grin.

Spring break is coming up and he has a week away from his beloved school. I have plans for biking, swimming, and trips to the park. I just hope that the weather cooperates. So, if you are out and about and see a happy fellow on an adaptive bike with a green squeaky frog on the handlebars, give us a wave! Biking is fun! Work and pray for peace. Be good humans, and we will chat soon.

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.