An iPad, a Voice

About ten years ago I was out running in a snowstorm. In a very unusual move for me, I had ear buds in and was listening to a variety of music. I have probably run with ear buds three or four times in my life, as I tend to lose myself in the music and not pay attention to my surroundings. Anyway, on this run I was praying, as I often do. I was asking God if Ravi would ever speak. Suddenly, the music on my iPod shifted to the song “Mary did you know?” Here are the lyrics which stood out to me:

“Mary did you know that your baby boy will give sight to a blind man? Mary did you know that your baby boy will calm a storm with his hand? Did you know that your baby boy has walked where angels trod? When you kiss you little baby, you kiss the face of God.”

Refrain

“The blind will see, the deaf will hear, the dead will live again. The lame will leap, the dumb will speak, the praises of the Lamb.”

These lyrics stopped me in my tracks. “God”, I asked, “Is this for real?” The song ended but instead of going on to another song, it repeated, and those lyrics stood out to me again. I was deeply moved. I have carried this memory in my heart for over ten years.

Yesterday Boo Bear and I were hanging out in his room. I was sorting laundry and he was playing on his iPad. He uses his iPad to tell me where he wants to go, what he wants to do, who he wants to see, but it is usually a very one way conversation. Yesterday was different.

Boo Bear: “I want to go to a restaurant.”

Harriet: “We went to Dairy Queen today.”

Boo Bear: “Misty Slush.”

Harriet: “That is correct. You had a Misty Slush.”

Boo Bear:” Culvers.”

Harriet: “Well, we are having chili for dinner tonight but I bet Peter will take you to Culvers tomorrow. What would you like to order?”

Boo Bear: “Hamburger with cheese.”

Harriet : “Okay. We will tell Peter that is what you want. How many hamburgers do you want to order.”

Boo Bear: “One.”

This is the first actual back and forth conversation I have ever had with my son. Usually he just tells me what he wants, or leads me to the desired object and that is that. This time, he chose to engage with me and have an actual conversation. The lyrics from the song came back to me. “The blind will see, the deaf will hear, the dead will live again. The lame will leap, the dumb will speak, the praises of the Lamb.”

I have known for a long time never to underestimate my son. He will always surprise me. I also know that God’s love for Ravi is steadfast and unending. Miracles do not happen overnight. Prayers are not always answered by return mail. Sometimes the answer to a prayer can take a decade or more.

Right now, in a world consumed by fire, disease and sadness, I cling to such moments of light. On this morning of 9/11, nineteen years later, I am still overwhelmed with grief. But, I also believe that God works and moves among us. There are pockets of light that shine in when we look for them, or sometimes even when we are not looking. I see the grace of God through my children. Where do you see God in your life today?

A Boy and his Dog

Boo and Gloria are best friends. She wakes him up with kisses every morning and helps tuck him in at night. I could say that he shares his food with her, but generally she just snatches it out of his hand. Whenever you see one of them, you usually see the other. Last week I had to take Gloria to the vet for her Lyme booster. Boo came along for the ride. Due to Covid, we no longer go into the vet. You call them upon arrival, a tech comes out and collects your pet, you wait in the car, and they bring your pet back when they are finished. It takes very little time. So, I figured Boo would like to go for a ride in the car with Gloria and I brought him along.

We pulled up in the parking lot and I called the front office. They said they would be right out. Boo was happily sitting in the back seat, stimming and babbling to himself. A few minutes later a tech came out to collect Gloria and Boo completely melted down. He could not understand why I had just handed Gloria off to a complete stranger. He looked at me as if so say, “Am I next?” The tears and snot were in full flow. I felt horrible. I told him over and over again that Gloria would be right back and we would go home. He continued to cry. Fortunately, the tech was really quick and Gloria was back in under three minutes. As soon as she was in the car, Boo stopped sobbing and gave me a very watery smile. My heart broke again. We headed home.

When I brought Gloria home a year ago Boo took one look at her and cried. He thought he was being replaced. But, Gloria managed to worm her way into his heart. She sits on the bed with him when he is on his iPad. She follows him around the house. She kisses him good morning and good night. Though, thank God, he has not had a seizure in 8 weeks, she curls up with him after a seizure and keeps watch that nothing bad will happen. Boo does not have this bond with our other two dogs, just with Gloria. They are a funny little duo, a man/child with autism and epilepsy and a 14 pound ball of fluff who secretly thinks she is the size of a Great Dane. Right now, Boo is still sleeping and Gloria is busy herding the big dogs. When I wake him up for his morning meds she will be right there with us, ready to start the day and partake in whatever adventure he may take her on. Peace out, folks, and pet your dog. If you don’t have a dog, you may borrow one of mine.

Early Morning Boo

My muse has been lying fallow the last few weeks, but this does not mean that I have not been busy with Boo. He seems to be enjoying his summer. He has made friends with the workers at Subway and Wendy’s. We go for long walks. He wears a mask like a champ when we are out and about. We are five weeks seizure free and for the most part he is sleeping. This morning was the exception.

Typically, Boo needs about eleven or twelve hours of sleep a night to function and not have seizures. Generally, he goes to bed around nine or ten and wakes up about the same time the next morning. This morning I had planned to meet Alissa at the Y for a workout and then have coffee. She has been under quarantine for the last two weeks and we have missed her. The good news is her test for Covid 19 came back negative! So, I was looking forward to seeing her.

At 4:15 this morning I woke up to some persistent thumping noises. It was Boo. He was not having a seizure, he was just being is usual percussive self. I waited a while to see if he settled down, but it was a no go. I made some coffee and waited a little bit more. Nope. I texted Alissa, who is used to our erratic schedule, and asked for a rain check for the workout and coffee date. I went in to see Mr. Boo. I was greeted with an ear to ear grin and more thumping. He bounced up and into the bathroom, drank about a quart of water, grabbed his beloved iPad and climbed back in bed. I began the morning med routine, making sure that Boo, Stevie the dog, and I all had the proper meds on board. At the moment, Boo is happily chatting with his iPad, the dogs are snoozing all over the floor, and my house, though not quiet, is at least calm.

Autism had taught me many things and the primary one is patience. I may have planned to go to the Y and to coffee this morning, but Boo had other plans and needs. He needed to see me and make certain that his world was secure. He needed a drink of water. He needed his iPad. Now that those needs are met he is content. He knows I am just one room away, pecking away at my laptop and sipping coffee. He knows that later we will go out on walks and adventures. He is not a hard kid (young adult) to entertain. As long as I am around and he has his iPad and little trips out into the outside world, he is happy. He does not need expensive toys, flashy clothes or the newest iPhone. Happiness is a gummy bear or juice box. Happiness is early mornings when only the two of us are awake.

I think of a few lines from William Blake: “Every morn and every night, some are born to sweet delight. Every night and every morn, some to misery are born.” Mr Boo, you were born to sweet delight and that makes me so happy. You do not pity yourself or understand or have the time for those who pity you. My deepest hope and prayer is that you will always find life to be sweet delight. Certainly, you delight me. Love, Mom.

Wear a D–n Mask!

Our breakthrough of the summer was getting Mr. Boo to happily wear a mask. Due to his many sensory issues he really does not like things touching his face. But, he also likes being out in public. And so, over the course of the last few weeks, I have convinced him to wear a mask while we are out and about. It also helps if I give him some gum to chew while he is wearing it. Thankfully, he has never learned how to blow bubbles!

Last week we had to go to Central Pediatrics for some lab work. To my horror, less than half the parents or children in the waiting room were wearing masks. No one took our temperatures when we came in or asked if we had been sick. We ended up waiting for twenty minutes in a room that felt like a petri dish. During out wait, another special needs mom came in . She looked around and appeared about as horrified as I felt. She struggled up to the check in counter with her child in a wheel chair and a bags of all his needed accessories. The receptionist handed her a sheaf of paperwork to fill out. She asked if there were a safe place she could sit with her child while they waited. The receptionist waved vaguely in the direction of the farthest corner and said that would do. So, this poor woman and I were sitting in opposite ends of the room, masked, gloved, and hoping no one would sneeze on our our child. Thankfully, we were called back, got tapped for labs without issue and fled. I was not amused.

Different scenario, same week. It had been at least six months since my last hair cut and my hair was at critical mass. After waiting a few weeks past opening I made an appointment at the salon. What a difference from the clinic! Upon entry, my temperature was taken. I signed papers attesting to the fact that I was symptom free. The pen I used was then sterilized. There were no chairs or magazines in the waiting area. In the back, the stations were spread far apart. My fear of contamination dropped drastically. Though having ones hair cut is a rather intimate process, I never felt in danger. Both the stylist and I were wearing masks. There was plenty of air flow throughout the room. Everything was sanitized. I got my haircut, tipped generously and left.

Another scenario, same week. My hedgehogs love to eat mealworms and it had been months since I had been to the reptile shop. Upon entry is was clear that a lot of things had changed. Parts of the store were blocked off. There were clear entry and exit lines. No one came within six or ten feet of each other. I got my hedgie treats, said hello to the tortoises and headed out. Everyone there was wearing masks and gloves. It felt very safe.

So, three different scenarios and the only place I felt my child and I were in danger was at the clinic. My chances of contracting something dreadful seemed much higher there than at the salon or the reptile store. I think that is a sad indictment on my clinic.

Why is it so hard for some people to wear a mask? I see it as an act of kindness. Boo or I could be asymptomatic carriers of Covid 19 and not know it. By wearing masks, we are helping protect the more vulnerable in our society; the fragile child in the waiting room, the mom on chemo, the adult with asthma, we are helping protect all of them, simply by wearing a mask. Like everyone else, we want life to return to “normal”. But, what is normal? Maybe this is out new normal, a time and place where we wear masks to protect our fellow human beings. I hear people say that they cannot breathe in a mask. But, the surgeon who fused my spine and made is possible for me to walk again wore a mask for three hours. He wears one every time he operates. The OB/GYN who delivered my babies wore a mask, and I am known for having very long labors! So, that can’t be it. I hear people say that they don’t like the way masks feel. Well, neither did Boo at first, but he got used to it. And, after a while, he forgot that is was on. At this point, for him and me, putting on a mask when we go out is as reflexive as putting on our glasses in the morning, it is just what we do.

I don’t know if people are just tired, or callous, or stupid when it comes to wearing a mask. It seems so little to ask in return for the health and well being of our society. I think of Alissa’s saying every time she leaves us, “Be good humans.” It is not too hard to be a good human, please, wear a mask.

The Delights of Routine

Mr. Boo is now nearly two weeks into adulthood and seems to be hitting his stride. We have our summertime routine, now. Since he is growing like mad, he loves to sleep in. I wake him up early to give him his meds, but then let him doze off again. In a few hours he will get up and raid the kitchen for pop tarts. We will eat and dress in a leisurely fashion and then go face the outside world. Right now, he is on a Wendy’s kick. Please don’t judge me. I won’t eat Wendy’s because they support the orange maggot in office. But, these days, Boo is a picky eater and I will do almost anything to get calories into him. So, we swing by the drive through and pick up chicken nuggets, fries, and a drink. We drive to the nearby park and go to the same picnic table every time. Boo tears into his bag of food with wild abandon. After the first few bites he slows down enough to savor his food. We watch the birds and the squirrels. They watch us, waiting for fallout. They won’t come up to us, but as soon as we vacate the premises they are all over the scraps.

After lunch we wander over to Har Mar mall. I am amazed the place is still open. Most of the stores are shuttered. There is nary a soul to be seen. But, Boo loves this place. We have visited here since infancy. There are long corridors for walking and running. He can do his own thing without bothering anyone and it is easy for me to keep an eye on him. His favorite thing at the mall is the gumball machine. You put in your quarter and a gumball comes spiralling down a long ramp. Ah, the delight of anticipation. What color will the gumball be this time? Red? Blue? Green? Yellow? Once the gumball pops out of its chute it goes directly into Boo’s mouth. Pure bliss.

We had not been to Har Mar during the shut down, so Boo was very happy to return this week. It was dead quiet. Even the octogenarian walkers were nowhere to be seen. Neither, alas alack, was the gumball machine! All the candy machines in the mall had been taken out during Covid. Mr. Boo looked high and low, but we could not find them. He was still happy enough to walk a few laps around the mall and then we headed for our next favorite place, Target. I picked up his meds at the pharmacy and then we stopped by Starbucks for a juice box. A kind friend had given him a $25 gift certificate here so this should keep him in juice boxes for a long time. Thank you, Karen! He took his juice box and I took my coffee and we headed back out into the world.

At home, he was happy enough to flop on his bed with his iPad and the puppy for while. Gloria licked him all over as he probably still tasted or smelled like chicken and French fries. The two of them have a love/hate relationship. She likes to steal his food. He likes to pull on her paws. But, when I suggest that they give each other some space all I get are dirty looks from the two of them. Most of the time when Boo is flopped out on his bed, Gloria is somewhere nearby. After a rest, we go for a walk to explore the neighborhood. Glorious pop art has sprung up all over our neighborhood after the George Floyd killing. It is a vital reminder that yet another innocent life was lost but that they fight for truth, justice, and common decency must go on. I point out the Black Lives Matter signs to Boo and we talk about social justice. We see a sign that says “Be a nice human” and I pause to take a picture of it. Sometimes we walk 2 miles. Sometimes we walk 5. It all depends on how much energy Mr. Boo has to burn on that particular day. Eventually, we head home and see what daddy has prepared for dinner. We spend a few hours together as a family and then it is time for the next round of meds. This combo of meds tends to make Boo sleepy. He prefers to doze off while playing with his iPad. Normally, I would discourage screen time right before bed, but it really does have a soporific effect on him, an sleep can be hard to come by, so I let it go. Eventually, he will drift off and I will slip out of his room. Sleep well, dear little man.

The other night after our first Har Mar expedition, I had the most wonderful dream. Boo and I were exploring the mall. We found a secret back room, known only to those on the spectrum. In this back room were all the hidden gumball machines. The room was full of kids and young men just like Boo, all happily chomping away on gumballs. I woke up smiling from this dream. Boo, I hope Covid ends, oh how I hope if ends, and the gumballs come back. In the meantime, we will make do with juice boxes from Starbucks.

Happy Early Birthday, Mouse!

Dear Miss Mouse,

It is the last day of your fifteenth year. You started tenth grade this year and finished during a pandemic, still rocking your 4.0 GPA. It was not the year we imagined it to be, but you handled it with grace and poise, nonetheless. I love watching the proud woman that you are becoming. You danced into my life sixteen years ago tomorrow and things have never been the same. I love how completely you love and accept your friends, how you are an advocate for your brother, how you nurture all who cross your path. I love how you sing when you are happy, no matter who is listening. I love the pictures that you draw and the poems that you write. I love how you are eager to get up early with me and go to the gym to swim or work out.

I hope your sixteenth year is good to you and your are good to it. You don’t know it yet, but I am giving you driver’s ed lessons for your birthday. As well as a shopping trip to replace all the clothes you have rapidly outgrown. Next weekend you are going camping with your best friends. We looked for jobs for you this summer, but we are also in the midst of a recession. Thankfully, there are kind neighbors who will pay you to walk their dogs, babysit their children and weed their gardens. I think you will find this work much more satisfying than retail.

You and I were late coming to the autism party. I had no idea that I was on the spectrum until I was diagnosed at age 46. It did not occur to me until then that you might be on the spectrum because you are so much like me. Your diagnosis came at age 14, earlier than mine, but later than Boo’s. But, here we are , one happy autistic family. The only one who has never been diagnosed is your dad, but every therapist who has seen him on our journey agrees with me, dad is definitely on the spectrum, too.

Go forth into your sixteenth year with joy and courage. Shine your love on a sometimes undeserving world. You will find that grace comes in the strangest of places, that angels really do walk among us, and that you can do anything you set your mind to do. All my love, your biggest fan, Mom.

Happy Birthday, Mr. Boo!

Hey, Mr. Boo! Did you know it is your big day? You are 18 years old today. Furthermore, you were born on June 18, making this your golden birthday. Even more exciting, June 18 is Autism Pride Day. How did you know to be born on this day? You are so clever.

You have been my ray of sunshine for 18 years. Even when life has handed you lemons (nights of back to back seizures) you still come out smiling. You wake up with a smile every morning and each day is a new adventure. You are fairly easy to keep happy. You love your early morning snuggles with mom and Gloria. You like to go for long walks with mom and Alissa. You and Peter like to go driving in the car, foraging for the perfect slice of pizza or bowl of noodles. You love it when your daddy tickles you. You like to tease your sister. Dips in the pool and the hot tub are also loads of fun. You like to buy snacks at Wendy’s and go to the park and eat them. You don’t really care about clothes or money, success or prestige. You care if people are good people and are kind to you and their fellow humans. In height, you tower over me, but you still like to sit in my lap and hold my hand when we cross the street. Boo Bear, you will never be too big or too old to sit on my lap or hold my hand.

Your senior year was interupted by Covid 19, but your wonderful school still managed to pull off the world’s coolest graduation ceremony and you loved every minute of it. You haven’t been able to ride the bus since the beginning of March, but I hope and pray that the bus will stop at our house for you in September and you can begin a new career at Focus Beyond, a transition school right next door to Bridge View. There, you can reconnect with old friends and hopefully make some new ones.

I don’t have the words for the feelings in my heart when I think of you, Mr. Boo. Just know that you will always be my sweet boy, even as you now are growing into manhood. I love you forever and then some more. Love, Mom.

Gloria, aka Princess Potty Mouth

Hi all. In a time of chaos, destruction, and gut wrenching sadness I decided to write something to lighten the mood. What is better at lightening the mood then an 11 month old sassy puppy?

Gloria, a toy Australian Shepherd, joined our flock late last summer. She is 14 pounds of fluff, sass, and attitude. When she is grumpy about something, like someone taking her bone (usually a larger dog) she will mutter under her breath and it sounds like she is swearing, thus the nickname. She is a smart girl and eager to please. She knows sit, stay, come, down, spin, shake, and sit pretty. Last night we realized that she knows a lot more. Robert put the dogs out for a late night outing, not realizing that someone had opened the back gate. All three dogs got loose and took off. A few minutes later Robert discovered that all three were on the lam and went out to call for them. A few minutes later Gloria showed up in the alley. Robert called her to him, she came, but then barked and ran off. As she was runnning she was looking back, obviously expecting him to follow her. She led him down the alley and over to the next block where they found Stevie, our blind Aussie. She then aggressively herded him over to Robert and then home. A few minutes later Max showed up on the front porch in high spirits.

Gloria’s actions surprised me because I had not taught her to get help or to look out for Stevie. I had taught these behaviors to Rosie, our last Aussie. Rosie was trained that if somone had fallen she was to go and get help and bring the person to the victim. She was also trained to track and find Boo if he wandered off. I had not taught these actions to Gloria, as Boo has been less of a wandering kind of guy lately. Needless to say I was very impressed. If she already knows how to do a retrieve on another dog, it should not be hard to get her to do a retrive on Boo Bear if he roams away from home.

The other thing I wonder about is if I could train her to be a seizure alert dog. She has yet to alert me if Boo is about to have a seizure, but she is very gentle and careful with him, and obviously concerned after he has one. She will stick close to him, give him kisses, follow me around and make certain that I am taking good care of him. I think at this point, Boo knows when he is about to seize. He will come to me or Alissa, take our hands and get himself to a safe place before the seizure starts. If Gloria is around him enough maybe she can pick up on his cues before I do and warn me. I have known a few verbal epileptics and they have said they have an aura or taste a certain odd metallic taste in their mouths before a seizure hits. I have heard of dogs who can detect cancer or low sugar in diabetes in their owners. I wonder if Mr. Boo smells different to Gloria when he is about to seize. I do not know the answers to these questions, but it certainly gives us something to work on this summer.

Thanks for tuning in. Go forth and be peaceful creatures.

Boo, what do you know?

Boo, you may be non verbal, but you are a smart cookie. You pick up on a vibe instantly. It is for good reason I never watch the news around you. I try not to talk about scary things around you, because you are always listening. We tried not to talk about George Floyd in your hearing. Tried not to talk about how an innocent man died in the street, trapped under the knee of a cop, unable to breathe. We did not talk about the looting and rioting that is going on in Minneapolis, only two miles away. But, you were awake all last night. Thankfully, you did not have a seizure. But, you could smell the smoke in the air. You could hear the dogs pacing the floor. You could hear the choppers overhead. You knew. All night long you paced and flapped. Around three in morning you burst into heartbreaking tears. I held you in my arms and told you that I loved you, that I would keep you safe, that you were my good Boo. I tried to get you to sleep. At 5:00 am I got up Mouse, so we could look for the comet for her astronomy class. You insisted on following us. We could not find the comet. The air was thick with smoke. The choppers were overhead. We went back in. I gave up on sleep for the night. Gave you your morning meds, praying they would hold off the seizure that lack of sleep seems to bring. I gave you your iPad and let you retreat back into your room. I turned the TV on mute and watched as our sister city went up in flames. Interestingly, all the corporations got the torch, but the independent and minority owned stores surved. Target is looted, Auto Zone, Aldi’s, Wendy’s, the new high rise, they are all gone. New Moon Bookstore is still there. The Indian restaurant is still there. I don’t know if Hook and Ladder made it or not. My friend on that side of town says her house is okay but it is a surreal scene. Everything is acrid with black smoke. All she can hear is choppers, gun shots, and oddly morning birds singing. I reach out to other friends. Are you okay, are you safe? I worry about the ones that don’t answer back. Maybe they are sleeping? But, how can one sleep when one’s city is on fire?

What do you know, Boo Bear? What keeps you up at night? Last night was a hard night for so many. This morning we blearily stumble to our coffee pots, look at our newspapers, pray for peace, hope that the National Guard is not needed. We did not need police brutality in the middle of a pandemic. Correction, we never need police brutality. How do I keep you safe, Boo Bear? How can I get you to sleep? How can we stop the seizures? How can we stop the violence? How, how, how? I have so many questions and no answers. All I can do is hold you and love you. I will always protect you. What do you know, Boo Bear? What would you say to the world? Can you pray and act for peace? Can the world stop and listen to a non verbal Boo?

Guardianship

As of May of this year, Bug and I became the offical guardians of Boo.  Because of the pandemic, we did not get to have our day in court, but as no one was contesting the guardianship it went through just fine.  So, what does this mean going forward?  It means that Bug and I are now “authorized to act as Limited Co-Guardians”.  For Boo, this mean we will do the following:

  1. To establish the place of abode with or without the State.
  2. To provide for the Responden’ts care, comfort, and mainenance needs.
  3. To give any necessary consent to enable, or to withold consent for, the necessary medical or other professional care, counsel, treatment, or service.
  4. To approve or withold approval of any contract, except for necessities, which the Respondent may make or wish to make.
  5. To exercise superivisory authority over Respondent.
  6. To apply on behalf of the Respondent for any assistance, services, or benefits available to the Respondent through any unit of government.

What does this mean for Boo?  According to the state of Minnesota, he has the right to marry and have a child.  Obviously,  we don’t see this happening, but he has the right.  To my great joy, he also has the right to vote.  The lawyer seemed dubious about this request.  He said most wards like Boo do not vote. I explained that at the last election I saw a young woman with special needs casting her vote for the first time.  I decided then and there that Boo would also get this right.  We are a highly political family.  Boo listens carefully to our discussions. He has an acute sense of right and wrong.  He knows who he likes and who he does not like. This leads me to believe that he should be able to vote.  So, I don’t know what the lawyer said to the judge, but my request was granted!  Boo will vote in the November election.  Mouse is jealous that she is two years too young.

So, I have listed the things a guardian can do for a ward.  Are there things a guardian cannot do to a ward?  The answer is simply, yes.  A guardian cannot admit a ward (with limited exceptions) to a regional treatment center.   A guardian cannot have their ward sterilized, submitted to electroshock therapy or experimental treatment of any kind and cannot revoke a health care directive.  This seemed like a no brainer to me, but obviously someone must have tried since they were sent along in our guardianship packet.

Guardianship is a lengthy process.  I started gathering data back in October and working with a lawyer at the beginning of this year.  It is also not an inexpensive process, but the legal team takes care of everything once the guardian has submitted the paperwork.  Luckily, we had all the paperwork ready to go before the pandemic hit.  In March, all of the court closed down.  I don’t even know if they have opened yet, but cases like Boo’s were able to be handled without us coming down to the courthouse.  Every year after this I have to submit a report to the court about Boo’s wellbeing and what gains or losses he has made.  This will ensure that guardianship continues smoothly.

I am very proud and relieved to be one of Boo’s guardians.  He has always been one of the lights of my life, but now I have ensured his safety, happiness, and wellbeing.  Welcome to adulthood, big guy!  We got guardianship and had a graduation all in the same month.  I can only wait to see what adventures this summer brings.  Love you always,  Mom.