Harriet's Hedgehogs and Autism Advocacy

Hi y’all!  This is Boo Bear and I have taken over the computer while Mommy is taking care of the hedgehogs.  43 days ago her feet stop working during a run.  41 days ago she had cervical spinal fusion, C4-C7.  For about a week, Mommy was not much fun.  She spent a lot of time asleep.  Daddy said this was good for her but I thought it was really boring. The good thing was, she kept forgetting to lock the candy cabinet, so I got lots of treats!  She also did not feel like cooking, but lots of friends brought over tasty food for us to eat.  I liked the chili and the brownies the best.  Gradually, Mommy started to feel better.  She would take me and Max for walks, but she did not go very fast.  Boring!

In the last couple of weeks Mommy started perking up. She was not taking naps and she and  I started taking longer walks.  She made it a game, to see how far we could go every day.  As long as she had treats, I was willing to go indefinitely.  I like walks and I like treats!  It was fun to see the leaves changing color and visit with other neighbors and their dogs.  Gloria, our puppy, is not sure how she feels about toddlers and some big dogs, so Mommy has to carry her past them.  Gloria is silly. She likes to lick my face and nibble my fingers and toes.

Yesterday, Mommy was in a really good mood.  She got to run again!  She said it was not very fast or very far but her feet did exactly what she asked them to do. She was so excited that she signed up for a 5km Turkey Trot and got a girlfriend to sign up with her too.  Last weekend they went for a long walk together and went nearly 6 miles. She said it did not seem that far, as they just kept walking and talking and time just slipped away.  Then they practiced Kung Fu.  Mommy is hoping to earn her black belt next spring.  She has had that goal for almost 5 years, to get her black belt before she turns 50.  I think she can do it.  Her friend will take her black belt test in December.  Mommies are fierce!

Mommy is done with the hedgehogs now and wants her computer back.  I am hoping my new glasses come in this week, as I am having a hard time telling where I am going. But, I can always find my way to the candy cabinet!  If I smile at you nicely and sign, “More candy, please”, would you help a fellow out?

Thank you, my readers, so much for your tremendous feedback after the last dental fiasco.  Today restored my faith in humanity and pediatric dentistry.  Dr. Hagerman suggested I try taking Boo to Dr. Rick Baylon at Pediatric Dentistry in Woodbury.  If you are looking for a caring, gentle dental office that can put the most anxious of children at ease, look no further.  Run, do not walk, to your phone and make an appointment.  The website is wdby@PediatricDentistryMN.com.

Boo Bear was fairly relaxed going into this appointment because I promised there would be no owies, we were just going to look at his teeth and chat.  He liked the hygienist right off the bat because she had on a cool Halloween smock and funky earrings.  He looked her in the eye and grinned.  She started chatting him up about various Halloween things and he giggled.  He pulled out his iPad and she sat down next to him and they had a lovely chat about bowling.  This blew me away. There are very few adults Boo will openly chat with, and even fewer adults that take his attempts at communication seriously.  By the time Dr. Rick came in they were chatting like old friends.

Dr. Rick introduced himself and to my amazement turned to me and apologized for any abuse that Boo had endured under Dr. Alevizos, his previous dentist, who is now under scrutiny by the state board.  He was gentle, personable, and clearly understood kids, autism and sensory issues.  Boo was completely relaxed around him.  He looked in Boo’s mouth and said there were a few spots that looked like possible decay.  We set up a date to meet at Children’s Hospital next month to do some work under anesthesia.  He was happy to set up an early morning slot as I explained that Boo did not do fasting well at all.  Half an hour later, a totally relaxed Boo and an eternally grateful mom hit the road to grab a snack and head to school.  This clinic takes children up to the age of 18, but will accept special needs clients until they are 21.  It is easy to say that Boo has now found a new dental home for the next 3.5 years.

As we drove away, I was musing on how blessed Boo and I are to have not only a fantastic dentist, but such a wonderful school. Due to health needs, Boo has missed at least one day of school almost every week this fall.  In a regular school this would cause all sorts of problems.  At Bridge View, it is standard operating procedure.  This school deals with medically complex and fragile children.  They understand absences for medical and dental reasons.  Boo has attended this school since kindergarten and never once have I gotten any flack for his absences.

So, today was a very good day.  I am grateful for a fantastic dentist and a school that understands the medical complexities of children like Boo.  It takes so little effort to be kind to someone.  And kindness repays itself.  In the spirit of Dr. Rick, go out and do something kind for someone today, just for the heck of it.  You will feel good and I guarantee that they will too.

 

 

 

 

Though I generally keep Boo Bear’s medical information private, I would like to ask for some good vibes, prayers, white light, etc. for him.  He has been growing like a weed, but also steadily losing weight.  Some days he eats fine, other days he is not at all interested in food.  Blood tests and stool sample have ruled out all the obvious culprits.  We are going back in to see the doctor this afternoon for a weight check and another consult.  Please keep us in your thoughts.

I am spending most of today praying to any deity who will listen.  There is a rally and protest in downtown that I fervently hope will not turn into a bloodbath. For better or worse, Charlottesville is my home town.  I don’t want to see that violence here on the streets of Minneapolis.  We all have freedom of speech, please let us do it in a respectful manner.  I am also sending my prayers to the Kurds.  As a country we promised to protect them and now  we have turned our backs.  For these and many other reasons, I am sick inside.  So, whether you are a believer or not, or a person of good will, please keep these and all these thoughts within your heart today.  Be kind to each other. You never know the battle that someone may be fighting.

Most of you who know me are aware that I have a pretty long fuse.  I am almost always happy to add to someone’s autism awareness.  Well, that did not quite happen today.

Dental visits are hard for many of us, autistic or not.  My family has a wonderful dentist, Dr. Haggerman, on Minnehaha Ave in St Paul.  He has seen Robert and me for years and recently Mouse started seeing him, too.  I asked him how he would feel about treating Boo Bear and he agreed to see him, saying he would not force him to do anything against his will.  This morning, Boo Bear and I paid him an 8:00 am visit.  His dental hygienist, Marcia, was absolutely wonderful with Boo. He was not happy about getting his teeth cleaned, but he let her do it.  Later, Dr. Haggerman took a look at his teeth and determined that Boo has a few cavities.  We agreed that Boo would have to be under a general in order to get these teeth filled and he referred me to a classmate of his, Dr. Benke.  After dropping Boo off at school and fortifying myself with a stiff cup of coffee, I called Dr. Benke’s office.  The reception, to say the least, was chilly.  I told her I had a referral from Dr. Haggerman for my son who is autistic.  She immediately cut me off.  “I don’t think so, we just don’t serve people like that.”  I didn’t even let her say anything further, I thanked her and hung up.  It’s been a long time since I have run into this type of blatant discrimination.  I called Dr. Haggerman’s office back and explained the situation to Kris, his receptionist.  She said that the doctor would call me as soon as he got a break and sounded outraged on my behalf.  So, I did what any  spurned customer  would do; I looked him up on social media.  Ah ha!  His website asked me to submit a testimonial, and I did, without mincing words.  The website also asked me text the office, so I did, leaving a scathing review.  This did not even begin to mollify me.

So, here is what I would like that snooty receptionist to know: I am one of THOSE people.  So is my husband, so is my other child.  We are autistic, or if you prefer, neurodiverse.  We are well educated, well spoken, and have the means to fend for ourselves.  My son may not have words to speak, but that does not in the least diminish his value as a human being.  He can love deeply, laugh heartily, find his way out of the toughest maze, express what he wants and needs through sign and his iPad. He is bright, funny, loving and has a wicked sense of humor. But, Mrs. Snooty receptionist, you will never get the pleasure of knowing this because your office does not serve people like him.  Well, I can tell you, your office will never serve me, my family or my friends, either.

Discrimination comes in all shapes and forms.  People are discriminated against because of the color of their skin, how they talk (of don’t talk) where they come from, how educated they are.  The list goes on and on.  I want to thank my friends online and in real time who reached out to me today to offer their support and recommend their dentists for Boo Bear.  I want to thank all those people who educate themselves about autism, who are able to step out of their preconceived comfort zone and confront something new.  I want to thank everyone who keeps Boo Bear and his sister in their thoughts and prayers.  Thank you you, and as my dear friend A says, “Be good people.”

Hello world, Boo Bear chiming in again because the post surgery Mommy is a real slacker.  Guess what?  We have a new puppy!  Her name is Gloria and she is becoming my new buddy.  When Mommy first brought her home I cried. I was afraid that Mommy would love the baby more than me.  Mommy assured me that this was not the case.  She has room in her heart for everyone, and I have a special spot right in the middle of it.  Anyway, Gloria is funny. She chases her tail, she chases Max’s tail, and she loves to rough house with Stevie.  When I am sitting on the couch she snuggles up against me and gives me kisses.  Her tongue tickles and her fur is super soft.  Talk about great sensory input! I have not really loved a dog since I lost Rosie last year.  I don’t know if Gloria is going to be my service dog, but I know she will always be my friend.  I have to go get on the bus now.  Mommy says she is busy doing something called “recovery”.  Frankly, I think it is just an excuse to drink more coffee.  Whatever, ta ta!

Hello world, it is Boo Bear and  since Mommy has been slacking on her blog, I decided to chime in. For several months, Mom has been bothered by numbness and tingling in her arms.  Eventually, she went to the doctor who ordered X rays and an MRI.  She had the MRI about 3 weeks ago, but the films got lost between the radiology office and her regular doctor’s office.  On a Friday Mommy went out to run, but her feet felt numb and did not work right.  On Sunday she fell down a flight of stairs.  On Monday, she called her doctor to tell him about the new symptoms.  He had still not seen the MRI.  Late Monday night the doctor called Mommy and told her to go to the hospital NOW!  He said she had severe spinal stenosis and if she fell again she could end up a paraplegic.  Mommy went into the hospital early Tuesday morning and had spinal fusion of her C4 through C7 on Wednesday.  She came home on Friday, but she is not much fun. She does not want to wrestle with me or go for long walks.  When we do go for walks she uses trekking poles and walks super slow.  How annoying!  On the bright side, lots of people have been coming to see her and bringing food and treats.  I like treats.  And my PCAs have been taking me fun places.

Mommy is now almost 2 weeks post op. The recovery time is about 6 weeks. I hope she perks up soon.  I like taking long walks with her and we have to do my senior pictures.  I am a busy guy!

My piece of advice is this: if you have numbness or tingling in your arms or feet, you should go see a doctor.  Mommy and I both have a really high tolerance for pain, and we tend to ignore our bodies when things go wrong.  Mommy says this is common for a lot of autistics.  Thank you for reading my blog, I am now going to go raid the candy cabinet, steal Mommy’s key and sit in the back of her Subaru until she decides to take me some where.  Talk to you soon, Boo Bear!

As we all know, Mr. Boo loves juice boxes, but only the apple juice boxes that come from Starbucks.  In all other situations, he refuses to drink any kind of juice at all.  Funny kid.  Yesterday was shopping day at Target.  Boo was happy to get in the Caroline Cart and be propelled around the store.  As long as he is in the cart, the noise, hustle and bustle of Saturday shoppers do not bother him.  We got our groceries and headed for the check out line.  While Robert paid for the food, Boo and I took off for the coffee shop.  As we walked over there he was making his iPad say “Starbucks”.  As we walked into the coffee shop he pushed the juice icon.  Our barista recognized us and immediately made up an apple juice box and an almond latte, served with a smile.  Boo and I sat down and began happily sipping away.  Suddenly, a young woman came up to us.  She introduced herself and said that she was a speech pathologist and she was very impressed with Boo’s skills. We thanked her.  Robert and I think that Boo is pretty spectacular, but it is always nice to have someone else think so, too!

Robert and Mouse have been season ticket holders to the Lynx for the last few years.  On occasion, Boo and I join them as well.  Boo loves all sorts of basketball games, from pick up games at the park to the WNBA, he is an avid fan.  Sunday night was game night but Mouse did not want to go.  I suggested to Robert that he take Boo Bear. He thought about it for a moment and decided that this sounded fun.  I had mentioned it is passing to Boo, but did not know if he really took in the plans for the evening.  I was hurrying around trying to get Gloria ready for puppy kindergarten when Robert called to me and said that Boo was missing.  He was not in his swing or in his room. My next guess was that he was in the garage.  I poked my head in the garage and sure enough, there he was in the back of my car.  I opened the door and said, “Hey, buddy, what are you doing?”  He answered me by making the iPad say, “I want to go on the train.”  He was, as usual, absolutely correct. We always take the train to see basketball games.  I had not mentioned anything about taking the light rail, but he knew it was the first logical step in getting out the door.  So, he put on his shoes and socks, grabbed his iPad, got in my car, closed the door, and put on his seatbelt.  Clearly, he was just waiting for me.  I told him that he was right on target, but he was going in Daddy’s car.  We switched vehicles with no fuss and Robert whisked him off to the game.

So, this story could be just a cute little anecdote about Boo’s love for basketball. It is that, but it is also much more.  Just because someone does not look you in the eye, or verbally reply to you does not mean that they are not listening and taking in information.  Children, autistic and neurotypical are little sponges. They listen to everything!  They remember everything, whether you want them to or not.  Please, please be careful of what you say in front of all children and teens, verbal or non verbal.  They may not be looking at you, but I guarantee that they are listening.

By the way, Boo Bear had an awesome time at the game and the Lynx won!

As we all know, Boo relies almost exclusively on his iPad to communicate.  Somewhere along the line, A and I began referring to it as Dapi, which became its pet name.  Anyway, Dapi goes everywhere with us.  Our adventures begins on a rainy Tuesday this week.

Boo and I needed to go to Target to get groceries and he made it clear that this should include a trip to Starbucks for a juice box and a slice of pumpkin bread. He knows I will always stop for coffee so it was an easy sell.  The Minnesota State Fair was in full swing and lies between our house and Target.  Despite the rain, traffic was at a crawl.  Nonetheless, Dapi, Boo and I arrived at Target, got our groceries and coffee and decided that life, though rainy, was good.  I clearly remember walking us back to the car, holding up the umbrella to shield Boo and the iPad while juggling my coffee and groceries.  I popped open the car doors, let Boo in and put away our groceries. Without a second thought, I made sure Boo was buckled in and drove off.  The traffic was at a crawl again and the heavens completely opened.  I realized that it was almost lunch time and that I needed to feed the kids, pick up Mouse and run across town to pick up a friend.  I asked Boo if Wendy’s sounded okay and he enthusiastically agreed.  Twenty minutes later we pulled into the drive through. It suddenly crossed my mind that I Boo was being uncharacteristically quiet.  He was not chatting on the iPad.  I looked in the back seat.  My heart sank.  I did not see Dapi.  “Boo”, I asked, “Where is Dapi?”  Boo looked at me and then looked sadly at the car door.  “Oh no”, I thought to myself, “This is not good at all.”  I was already in the pickup lane for food and could not get out and the rain beat down steadily.  After a definite wait, we got our food and I sped towards home to get Mouse.  On the way I felt the definite need to pray.  I am not Catholic but my years of teaching in parochial schools has left me with some definite  habits.  Immediately, I said, ” St. Anthony, St. Anthony, please come ’round.  Something is lost that can’t be found.”  Then I thought to myself, what saint or divine being would really understand a teenage boy and a lost communication device?  I have always had a special affinity towards Our Lady Mary and I began to pray the Rosary fervently.  After all, Our Lady lost her Son in the temple.  Surely she would understand a teenage boy who could not keep up with his technology.  As I drove and prayed, a feeling of peace came over me.  I sped home and called Target customer service to see if anyone had turned in a lost iPad. .  No luck.  I tossed the kids their chicken fingers, loaded everyone  back in the car and sped back to Target, praying all the way. The rain continued to pour.  An hour after we left I screeched back into the Target parking lot.  To my utter amazement, though the lot was full, the area around where I had last parked was completely empty.  And, there, in a puddle of rain water, in the middle of lot, sat Dapi.  I leaped out of the car and snatched it up, fearing the worst.  To my utter amazement, not only was it still working, it still had a full battery charge!  The Otter Box had done its job exceedingly well.  Letting out loud prayers of thanksgiving I wiped it off with my shirt and presented it to Boo with a flourish.  He grabbed it out of my hands and promptly resumed his chatter.  Limp as a dishcloth, utterly exhausted, I climbed back in the car and proceeded across town to get Mouse’s friend.

This latest adventure taught me some things.  One, praying to Our Lady and St. Anthony is an unbeatable combination.  Two, never give up hope.  Three, Boo Bear definitely has his own guardian angel.  This angel has protected him from danger when his has eloped, held him during seizures, and helped us find his iPad.  After the return of the iPad, if Boo’s angel was down at the local bar throwing back a stiff drink, I say more power to him.  Please stay tuned for more adventures of Boo and Dapi, the little iPad that could.

Mr. Boo, it seems it was only yesterday that you stepped off the bus and began the summer leading to your senior year.  I am sorry to see this summer end.  I don’t blame you and your sister for stomping out of the room when I foolishly suggested going back to school shopping.  I don’t want this party to end, either.  The three of us have done so much this summer;, you, me and Mouse.  We have walked hundreds of miles around St. Paul, on roads and on trails.  We have tested out the swing sets at multiple parks.  We participated in our first 5km and raised money for Parkinson’s research.  You ate vast quantities of food, slept it off, and then woke up to re-raid the refrigerator.  You and your sister grew so fast!  You both tower above me and like to pat me on the head.  But, in public, you both still reach for my hands, and we walk down the sidewalk together, and unbreakable trio.  I am so blessed!  How many mamas still get to hold hands with their teens in public?  Boo and Mouse, I will always be there to hold your hands, or be your lap to sit in, even when your legs spill all over the floor.  From Mr. Boo I learned the importance of the perfect juice box, and that apple juice in a cup just will not do.  From Mouse I learned that apple juice will just not do, period.  Thank you for the tips.  Mouse, you traveled to Ireland this spring and Montana this summer.  You eagerly donned a backpack and hiked for miles in the mountains.  You kicked and punched and leaped your way into your third degree brown belt.  Though I am sorry to see summer end, I am eager to begin Kung Fu again with you in the fall.

There is so much to do now. Mr. Boo needs his senior pictures taken.  I have found the perfect spot by a waterfall at your favorite park.  Mouse, I need to buy you new clothes because you outgrew everything and take you to orientation at your new school site.  But, I am not yet ready to put these plans into action.  Summer is fleeting.  We have two more weeks.  I just want to savor this time with you.  Soon enough you will shed sandals and don backpacks.  Soon enough, we will all return to a new academic year.  But for now, I just want to soak up this time with you.  Love for now and always, Mom.