Land of the free?

It is 4:30 am and once again my muse has come storming into my dreams, rousing me from a restless slumber. The 4th of July has always been my least favorite holiday, but this year its ratings have sunk even lower, if such a thing is possible.

Boo and the dogs are not fans of noisy holidays where people with small minds set off big booms. None of us slept well on the night of the 4th. I could hear Boo thumping about in his room and the dogs were pressed closed to my side, panting. The hedgehogs ran nervously on their wheels. Nothing about that night was restful. The next morning I got Boo up and put him on the bus. He seemed a bit sleepy and out of it. Then, I went to meet a favorite friend for brunch where we animatedly discussed all the woes of the world and how, if given the power and the means, we would solve them.

I got home about two minutes ahead of the bus. The bus door slid open, and Boo staggered off the bus. He looked very much like someone who was trying hard not to have a seizure. The Topamax, which controls his seizures, also keeps him from sweating and regulating his body temperature. He seemed both hot and cold at the same time. A note from his teacher wondered if he felt well, as he had been very quiet all day. He asked for a freezie from Taco Bell and I got us each one. He slammed his, then slammed mine, went into his room, pulled the covers over his head and descended into a very deep sleep. He woke up only vaguely for his evening meds and the returned to his torpor. It is now nearly 12 hours later and all I hear from him are snores. I do not think we will send him to school today. His body is too over stressed, and as a mom, I am too upset and angry at the world to send him out in it.

How can we as Americans say that we live in the land of the free? I do not feel free, and I certainly do not feel brave. I don’t feel free because my reproductive system is governed by old white men who have not the foggiest idea of how female anatomy works. (No, one cannot just reimplant an ectopic pregnancy.) I do not feel brave because my son could not go to school last week because of a dangerous presence in the neighborhood. I do not feel brave because people in Chicago could not safely attend a 4th of July parade without death and mayhem. I do not feel brave because somewhere out there, there is a two-year-old, a toddler with light up squeaky shoes, who has lost his parents, who only wanted to take him to see the parade. Because of a fanatical tRump supporter, he will grow up an orphan. People say he is too young to remember what happened, but trust me, at a cellular level, he will always know. What is so brave about taking up a sniper position on a roof and mowing down innocent citizens? On July 2, I was driving home from a wonderful trail race. I pulled up behind a massive pickup truck with multiple pro police stickers all over the rear. The most disturbing sticker was the one that said, “God bless our armed troops, especially the snipers”. I don’t normally swear, but WTF? Who in their right mind would praise a sniper? And two days later, a sniper climbed to the top of a Chicago building and did his worst. Needless to say, I gave that truck a wide berth, but it was an eerie omen of worse things to come.

My muse cannot sleep when she is outraged, and trust me friends, she is outraged. Furious at people who send off big booms and scare my child and dogs. Furious at old white men who refuse to take their feet off the necks of women. Furious that people could not go to a parade and then go home in peace, rather than in a body bags. I sit in my kitchen, in my favorite chair. I have a mug of coffee. My dogs are asleep at my feet. My hedgehogs are playing under my arms and behind my back. But this is only an illusion of peace because I am thoroughly disillusioned. “Know justice, no peace. No justice, no peace.” Trite, but true. We will not have peace until we have justice. We will not have peace until we have banned guns and secured the rights of women, of POC, of our trans allies. We will not have peace, and I will not rest. I am just one mom screaming out her injustice into the void. I don’t have power or political connections. But I can love fiercely and deeply. Like Meg, in A Wrinkle in Time, who used her love to overthrow forces of evil, I call out for more love in the world. Hate only brings more hate. We have to learn how to love again. This does not mean that we are passive, but rather, active. Be an activist, write, march, speak, even when your voice trembles. We should be able to love our country and not fear our government. Like any mom, I should be able to send my children to school and welcome them safely home at the end of the day. But these privileges are not ours for the asking. So, I ask you to join me. Join my voice of outrage and betrayal and love. Speak out against injustice even when it is easier to remain silent. Do it for Boo, do it for the orphaned two-year-old in Chicago. Do it for all the parents who lost their children to gun violence when all they did was send them to school in the morning. My muse will not stand by quietly, will you?

My Children, My Choice

I have been trying to write a blog for the last 4 days, but my muse has been silent. Tonight, she stormed through my dreams and demanded that I give her voice, at 4:35 in the morning. So, I complied, and here I am.

I was blessed with two viable pregnancies, giving birth to two children with ten fingers, ten toes, and a wicked sense of humor. After the birth of Mouse, I knew I was done having children and chose to go on the Pill. I have taken that pill every day for 18 years. If that pill were to fail, I know what I would do next. There is a clinic right down the street that would help me. Since I am grateful for the existence of this clinic, I write for them, I march for them, I give them money, and I signed up to be a volunteer clinic escort to help other women in need.

The idea that life begins at conception is such a Christian idea. Both our Jewish and Moslem brethren believe that the life of the mother always comes first and that the child is viable after his first breath. The ancient Rabbis who wrote the Talmud were very clear about this, and Islam has similar tenets. I cannot believe that Jesus would not have put the well-being of the mother first, as he was well versed in Judaic law and the Talmud.

I grew up in the shadow of an ectopic pregnancy. In 1973 my mother became gravely ill, but her OB refused to believe that she was pregnant and went chasing zebras. This was well before one could trot over to CVS and buy an at home prenatal test. All my mom knew was that she was sick and in pain and things were getting worse. Just before she ruptured, the doctor did emergency surgery and found that she had an ectopic pregnancy that had reached well into the second trimester. That pregnancy nearly killed her, nearly left me a motherless 2-year-old, and would have prevented my younger siblings from having ever been born. Now politicians without the slightest knowledge of maternal medicine are claiming that ending an ectopic pregnancy is wrong and that the embryo can be reimplanted in the womb. Wrong. If this were true, my mother would have had that baby in 1973, and I would have had had another brother or sister. My mom wanted that baby, but it was not to be. Ectopic pregnancies, left to run their course end in only one way, death.

The SCOTUS ruling happened last Friday. Mouse turned 18 on Saturday and I took her and her girlfriend to an Indigo Girls concert. The hall was packed with furious lesbians, activists, and allies. One could feel the rage and power in that room. In November, we will take this rage to the polls, so that every woman has the right to choose.

I chose to have two children, and then I chose to have no more. I continue to take the Pill because mother nature has a sick sense of humor and I don’t trust my uterus not to have one more go, just for old time’s sake. I am 51, Robert is 62. I would indeed be a geriatric mother. I have two autistic children. It is without a doubt that I would have another one, and one with complications. Mouse is about to leave home and set out on her own. Boo will always live with me and be cared for by me. But what will happen if I am no longer there to care for Boo? This thought haunts me at night. It would be irresponsible of me to put another autistic child into the system. I adore my children like life itself, but I do not want any more of them. And, no, I don’t want to put a child up for adoption. The foster system is overrun with unwanted children. Why can’t SCOTUS focus on these children instead of the reproductive health of women?

I wanted this to be a happy blog, celebrating the birthdays of two of my favorite people. But I am not happy. I am upset, angry, furious at old white men who seek to control the reproductive health of a nation. We cannot go back to pre Roe. Women have had abortions since time began. We will continue to have them. The question is if we can continue to have them safely. I pray that we can. This is not the time to despair, this is the time to rally and fight. To fight for women who want to have children, to fight for women who chose not to have children. To fight for women like my mom who wanted a child, but the embryo implanted in the wrong place. To fight for my 12 year old student who was a victim of rape and incest. She got pregnant in 1998. She was able to have an abortion which saved her life and let her graduate from middle school and high school. 12 year olds have no business having babies and she did not want one in the first place. These are troubled times. Continue to fight, continue to march, continue to make your voice heard. And, be a good human being, Boo is counting on you.

Fly High Eagles!

On June 3 I had the honor of speaking at the Bridge View School graduation. It was so much fun! There were 12 very excited graduates, all decked out in caps, gowns and corsages. Parents, guardians and friends filled in the chairs. Teachers sat with their graduates or with the BVS chorus. I told the graduates how proud I was of them, how far they had come and how they would always be a part of the BVS family. No matter where their journeys take them, they will always be eagles. I told them a little about Boo Bear’s graduation. He graduated in 2020, in the beginning of the pandemic. It was a drive by graduation. We were told to meet in our front yard at a certain time on May 16. The first thing we saw was a big fire truck! Following it was a line of cars of all the faculty and staff and BVS. They had signs, streamers, and balloons. Teacher Sonia hopped out of her car, gave Boo a big hug, put him in his cap and gown, took a picture, gave him another hug and hopped back in her car. That was the 2020 graduation! It lasted all of 3 minutes. I told today’s graduates how happy I was that we got a little more time to celebrate them.

The students all began the ceremony by sitting in the front of the room. One by one they saw their family members and went to sit with them, on them, or under a handy chair. It became a game of hide and seek when it was time to hand out the diplomas. Not everyone wanted to come off a lap our out from under a chair. One by one Principal Lisa coaxed them out, gave them their well-earned diploma, and had their picture taken. Parents beamed and there was not a dry eye in the house. At the end of the ceremony the graduates recessed out to a party on the patio. I went home. It was a wonderful morning. I am so happy I was asked to speak to the grads and their parents. These students, families, and teachers have worked so hard for so many years, it is lovely to congratulate them. If you are ever having a down day, I suggest you drop by BVS. That school radiates good energy and good will. You cannnot walk inside that building without feeling one hundred times better. I am so grateful to the staff at BSV for working with and believing in these young people. Truly, this school and faculty is one in a million. Boo Bear still has his class of 2020 BVS Eagles yard sign in his room. He is very proud of it. I am very proud of our graduates. Fly high, eagles, fly high.

Leaving it all on the dojo floor

It’s been a tough week in our country. It’s been a horrible week for elementary school children and their parents. It’s been a bad week for teachers. Once again, it is 4:25 in the morning and I am pacing the floors. I cannot sleep. I stand at the door of Boo’s room, just so I can hear the funny snoring noises that he makes. I stand guard against monsters I cannot see. I do not sleep. I don’t think many parents are sleeping these days, or teachers, for that matter.

Usually, I just write about Boo, sometimes about his sister Mouse. Today I will write a bit about me. Like Boo and Mouse, I am autistic. I was diagnosed at age 46 and some of the more ragged pieces of my life began to fall into place. At age 44, I first stepped foot in a dojo. Mouse wanted to join a friend who was taking Kung Fu through Community Ed. I signed her up and went to her first class. I instantly fell in love with Kung Fu. Something about it called to me. Mouse finished her first belt requirement and I signed us both up for the fall session. Unlike Mouse, Kung Fu does not come naturally to me. I really have to work at it. Children seem to pick up the moves with ease, for ladies in their mid-forties, it took a bit longer, but I persisted. That winter, we persuaded Robert to join us at the dojo. Six years later, we are all black belts and still a happy little trio. The black belt did not come easily. It took six years of work, through two major surgeries and a pandemic. Last winter, Mouse and I tested for our first-degree black belts and passed. That spring, Robert passed as well. When one first takes up Kung Fu, one gets a new belt every time one passes a test. As one advances. the belts take longer and longer to get. 14 months and 5 tests fell between my first black belt test and the test I took last night for my second-degree black belt.

I arrived at the dojo feeling virtually numb. My psyche had held all the pain and rage it had for over 36 hours and could hold no more. Robotically, I began practicing my two separate forms and my ten forms of self-defense. This test was a bit unusual, as I was double testing. Both Mouse and I wanted to earn our second-degree black belts before she left for college, so we chose to test twice in one night. She had tested last week and passed with flying colors. The dojo was filled with jittery children and adults, punching, kicking, jumping. I tried to slow down my breathing and center into the core of my being. A few minutes later I was called to the front to test. Going into the first form I stutter stepped, suddenly unsure of myself. Someone’s cell phone went off. Other students moved around me, intent on their own forms. Suddenly, I had a moment of clarity and the form began to click. My breathing smoothed out and I leaned into the moves. I finished the first form and was encouraged to try the second one. I needed no urging. I leapt into the second form, spinning and punching. My body took on a life of its own. I finished the form and knew that I had done well. The last part of the test was showing ten different forms of self defense. This I did easily. I bowed to my instructor and he showed me my scores. They were higher than I expected and he was and I were both pleased. I moved over to a different corner of the dojo and began working on kicking various targets. I aimed all my rage, grief and pain of the last 36 hours into those targets. I jumped and kicked, jumped and kicked. I kicked out at pain, oppression and loss. I let my body express its righteous anger at so many lives lost. I could have practiced for hours, but too soon, our time was up. We were awarded our various certificates and belts and headed out into the spring night. The fresh air felt good on my face.

I had entered the dojo numb, unable to process any more emotions. My body came alive during my form, and I was able to leave my rage, grief, and pain on the dojo floor. I left feeling curiously empty. Now it is 4:46 am and I am awake. The demons of worry stalk around my head. When the sun comes up, I will take these demons for a long run. In the meantime, I have the company of my sleeping dogs and hedgehogs. Later this morning, I will write a letter to Keith Ellison. I want to suggest to him that in order to own a gun, one must have proof of insurance and be at least 26 years old. One cannot buy a car without proof of insurance. One cannot rent a car if one is under the age of 26. If one is a young adult male, one will pay much more for insurance. Why can’t the same laws apply to gun ownership? And why does anyone need a semi-automatic weapon? No one does. We do not live in a war zone. But, if such weapons are readily available, we run the risk of sending our children into a firing squad every day we put them on the bus, every day that we drop them off at school. Every day that I put Boo on the bus I throw a prayer into the void that he will be delivered safely back to me in eight hours. Millions of parents repeat this ritual every day. It is time for the need for this ritual to end. Our children and teachers should be safe in school. Full stop. No one needs to carry a gun. Full stop. This is not the time to remain silent or offer “thoughts and prayers”. The very idea is blasphemy. This is the time to take to the streets, to picket, to call, to write. 50 senators hold our country hostage. Their hands are deep in the pockets of the NRA. This is in a country where over 80 % of the population wants stricter gun control. Please join me in the fight. Do it for the countless lives that have been lost. Do it for the lives which can be saved. I left my rage and grief on the dojo floor. I gained new energy for this fight. Please, be a good human, join me.

The Other Nineteen

I am sitting on my front steps waiting for the bus which will bring Boo to me. It is lovely May afternoon. Birds are singing, my hanging baskets of flowers are in full bloom. Because we are observing No Mow May, my lawn is a tangled thicket of grass, weeds, and dandelions. It is a pollinators delight. I hear the bus chug around the corner and wheeze to a stop in front of my house. Tim, the driver, waves and gives me a hearty greeting. We wait for Boo to emerge from the cavernous inside of the bus. He pops into a view, a tall bespectacled fellow, hunched a bit due to his backpack, his beloved Sam clutched in his hands. He gives me a lopsided grin and tags after me into the house. Once inside he flops down on the sofa, Sam in one hand, his iPad in the other. He chats about his day and watches his beloved Curious George. His life is good. I do not turn on the news. I do not want to bring the harsh realities of life in America into my living room. I do not want Boo to hear the news of the day. I want to shield him. I am acutely aware that I am a very lucky mom. I was able to meet my son at the curb and welcome him home from school. Nineteen children were unable to do this today. Nineteen pairs of parents are grieving as their children were snatched from them, senselessly.

“You have to be taught to hate and fear. It has to be drummed in your dear little ear. You have to be carefully taught.” Boo does not know how to hate or fear. Neither did those 19 children in a Texas elementary school. But hate and fear made its way into that school and did its unspeakable worst. I had thought Sandy Hook would be a turning point in gun violence. I thought our country would say enough and tighten gun reform. But nothing changed. Since Sandy Hook, I have had powerful, gripping images of a masked gunman breaking into Boo’s school. His classmates are among the most vulnerable. They would not know how to react to an active shooter. They would not know to run or hide. And they would die, shielded by their teachers, who would also die. I did notice after Sandy Hook that schools, Boo’s school included, are now locked down and a visitor has to be buzzed in from the office. This gives me scant solace. A lock and a buzzer will not deter a madman with a gun.

So, it is 4:43 in the morning. I can’t sleep. My dogs and hedgehogs are scattered around me, snoozing soundly. I can hear Boo making little sleep sounds from his room, but he is deeply asleep. I am the lucky one. I can slip into his room, silently, and check on him. Nineteen mothers had this chance ripped away from them. Senselessly. I have no words to put to my grief and rage. Last night I ran with running group, so wrecked inside I could barely speak. I am so grateful to my good friends who gently pulled me along in their wake and did not ask me to talk. Though running almost always soothes me, there is no way to check this pain. Over 80 % of our country is in favor of gun reform but are held hostage by 50 senators who are deep in the pockets of the NRA. Why do these people represent us? They could care less about our hopes, dreams, needs. They are motivated strictly by greed.

I will log off here. But, let this be my rallying cry. Take to the streets. March. Call. Write. Our children deserve better. Our children deserve to attend school in safely. Our fellow parents deserve to meet their children at the curb at the end of the day. If you can’t do it for you, do it for Sandy Hook, do it for all the other schools that fell to senseless violence. Do it for Boo. Be a good human, act now.

Tacos or burgers?

These are the questions that probably keep Mr. Boo up at night. Is he in the mood for a taco, or a big juicy burger? Or does he just want fries? Hmmmm.

Boo came bouncing off the bus in fine form yesterday, giggling and grinning. He used Sam to tell me he was thirsty but did not ask for his usual Gatorade. I was in the mood to go out, so I asked him if he wanted a Freezie. He picked up Sam and trotted for the door. In the car he said, “Coffee”. Ah, the child knows the way to my heart, I will always get coffee. I said, “Okay, first we will go to Caribou and get me a coffee, then we will go to Taco Bell and get you a Freezie.” He smiled. On the way he chatted about this and that. He talked about Mother’s Day, which I told him was next week. I wondered if they have been talking about that in school. He talked about the weather and riding his bike. In the middle of this, it struck me. Boo and I were having an actual back and forth conversation! I told him, “Boo, I love it when you tell me all about your day and what you are thinking.” He beamed ear to ear.

Caribou Coffee is two doors down from McDonalds. As we pulled into the parking lot, Boo looked over at the burger place and locked on. He continued to look at it while I ordered my coffee. It was obvious he was thinking hard. I got my coffee and pulled over. Pointing to Sam, I asked him whether he wanted to go Taco Bell or McDonalds. He spent a long time thinking, finger hovering above the icons on the page. Eventually, he decided he was more in the mood for McDonalds. We drove over and collected a quarter pounder meal with fries and a Sprite. He promptly slugged the Sprite and began digging into the fries with relish. In the back of the Subaru, the dogs were happily devouring their pup cups, whipped cream dripping from their whiskers. The car was filled with the sounds of contended munching. Life was good.

I wonder how much of this was premeditated on the part of Boo. He knows I am an avid coffee drinker but has never suggested that I go out for coffee. He also knows that the coffee shop is next to McDonalds. Was he trying to steer me to the McDonalds instead of Taco Bell? Who knows? I put nothing past him at this point. He is a smart cookie. The nice thing was, we had a fun half an hour together, conversed about the goings on of the day, and each got a treat to enjoy. Life is made up of small miracles, if you just take time to see them. Be good humans, drink all the coffee, pet all the dogs and hedgehogs, and we will chat again soon.

Using Sam to ask for salad!

Last night I had Zumba and Mouse had her college algebra class. This left Boo and Robert to fend for themselves for dinner. Robert asked Boo what he wanted to eat. Boo grabbed his AAC, Sam, and said that he wanted to eat a salad. A salad? This was a new one for us. Burgers, fries, pizza, tacos, freezies, yes, sure. A salad? Well…maybe? So, Robert asked Boo where he wanted to go eat. Boo told him Carbonnes, our local pizza place. They headed off for pizza and the rest of us headed out for our endeavors. At the pizza place Robert ordered pizza, bread sticks, a pitcher of coke, and then as an afterthought, a salad. He figured he would offer it to Boo, and if he turned it down, Robert would eat it instead. Food arrived at the table and Boo tore into the salad with gusto. He loved it! Robert had to fight him for a few bites. Salad eating complete, Boo turned to the more serious matters of pizza and bread sticks. It was a good supper.

I am continually amazed by what goes on in Boo’s head. We often order out from Carbonnes and Robert and I often get a salad. Boo had never seemed to notice. Anyway, last night, he felt the urge for salad and remembered that all sorts of good things come from the pizza joint, including pizza and salads! I am so grateful for an AAC in Boo’s life. It has opened up a world of possibilities for him. Just like in my last blog, when I had no idea that he wanted to go to Taco Bell, I had no idea that he liked salads, or even knew that they could be gotten at Carbonnes!

Just another day in the life of a Boo. He is full of surprises. And phooey to the doctors and teachers who said he would never be a communicator. Boo is a robust communicator and getting better all the time. Expect the unexpected. Be good humans. We will chat soon.

Musings of a tired mom

Hello, all. Currently I am putting my feet up with a cup of coffee. Note, the feet do not go in the coffee. The morning got off to a roaring start with Stevie, my blind, epileptic dog, having a clonic tonic seizure. This caught me off guard as he has been seizure free for nearly two years. When Boo has a seizure, he will need a good 12 hours of sleep to reset his brain. After Stevie comes out of a seizure, he is absolutely manic. He runs from one end of the house to the other, crashing into things. Normally, he can navigate the house and yard pretty well, but a seizure really disorients him. I gave him his meds, convinced him he was okay, and he has now, thankfully, crashed out at my feet. I am waiting for a call back from the vet, who will probably just tell me to keep an eye on him.

It is nearly 11 am, but Boo Bear is still asleep. He has a horrendous cold and I brought him home early from school yesterday. A student in his class has covid, so we tested Boo for it last night. Thankfully, it came back negative. I did not think he had Covid, as the last time he had it, the only symptom was a seizure. He has all his meds on board and is snoring away. School may or may not be in the offing for tomorrow. I just want to note that as soon as the schools took away the mask mandate both of my kids got sick.

Easter Sunday was a good day. I went to church for the first time in about 7 years. As an autistic, I take life very literally. In the Episcopal Church, one is supposed to be “in love and charity with one’s neighbor” in order to receive the Eucharist. Since there are definitely people I am not in love and charity with, I did not think I should go, or was worthy to go, to church. Good Friday I had a bit of an epiphany. Jesus hung out with sex workers, tax collectors, lepers, and the poor. He hung out with and broke bread with the people that the rest of society chose to ignore. I suddenly realized that Jesus came to be with and redeem sinners, and it was okay for me to go to church. I bounced this idea off of my dearest friend and spiritual advisor, April. She is the priest who officiated at our wedding 20 years ago. She and her lovely husband Rick, also a priest, pointed out that if everyone had to be in “love and charity with their neighbor” no one would ever be able to receive the Eucharist! Good point. I followed this thought up with another one. I bet there is not a priest out there who does not have some sort of niggling grudge against someone, and yet they celebrate the Eucharist every Sunday. Interesting. I guess at the end of the day, we just have to throw ourselves at the mercy of our Creator. Anyway, church was lovely, and due to Covid, socially distant. Everyone wore a mask. The peace was exchanged by gently waving at each other. Wine was not served, just a gluten free wafer. It felt very safe and welcoming. I will go back next week.

So, these are just some of the thoughts running around in my head. Seizures are hard. Coffee is good. God (dess) is gracious. Hopefully, when Mr. Boo wakes up, he will be feeling better. He has been using his AAC to tell me that his nose and throat hurt, which is a very good thing. I am sorry he is ill but am delighted that he can tell me what does not feel good.

Tomorrow, I am going to get my second covid booster. I will continue wearing a mask to protect those that I love and those who are vulnerable. Smile at your neighbor, it may be the only smile they get today. Peace.

I want to read a book

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.

The Importance of AAC in non speaking Autism

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.

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