Harriet's Hedgehogs and Autism Advocacy

Hi folks!  This is Sunny, Harriet’s hedgehog.  She just got back from the gym and is in the shower, so I am taking over the keyboard for a bit. Please bear with me, I have tiny paws and it is hard to type fast.  Anyway, as you know my mom had spinal fusion 12 weeks ago today. Yesterday she went back to see the doctor and got cool pictures taken of her back and neck.  The doctor was really happy and said that the bone had fused, just like it was supposed to.  Anyway, he told her that all activity restrictions were lifted and she could do whatever she wanted!  Mom is very happy.  Silly mommy, this first thing she did was to sign up for a reindeer run 5km.  Doesn’t she know how cold it is outside?  It is not even above zero today!  I hope she bundles up.  Anyway, my mom is pretty easy to make happy.  As long as she can run, hang with her hedgehogs and her dogs, and do lots of autism advocacy work, she is a happy camper.  I like it when she is happy because that means I get extra treats.  Oops, I hear the shower water turning off so I have to go.  Ta ta and watch out for Running Mama.

Nearly sixteen years ago Boo received his autism diagnosis.  The diagnosis was told to me in somber tones by a well meaning psychiatrist who claimed that he would make little progress and would probably not amount to much.  Luckily, I chose not to believe her.  Friends and colleagues asked me if I had taken time to grieve.  Apparently, this diagnosis was supposed to throw me into a deep pit of despair.  Obviously, it did not.  I threw myself into learning everything I could about autism and getting him the supports he needed, but I never grieved the fact that my son was not neurotypical.  I have a great kid, I told myself. Why should I grieve?

Last week, I was sitting in a similar conference room hearing that my second child had just received an autism diagnosis. Luckily, no one suggested that I should grieve.  Instead, the psychologist pointed out Mouse’s strong suits and the things that she was good at.  She made it clear that Mouse did not have to tell anyone about the diagnosis if she did not want to.  It was her information to do with as she wished.  Mouse is very open about being autistic, in fact wears it as a badge of pride.  She, and I , and the rest of the family proudly belong to the tribe of autistics.  No shame, no grief.

I am glad to see that times have changed a bit.  If your child was just diagnosed, remember that he/she is the same child whom you love and adore that he/she was yesterday.  There is not reason to grieve or mourn.  No one has died.  No one is sick.  No one needs a cure.  What do we need?  Understanding, empathy, an occasional accommodation.  What don’t we need? Sympathy.

I think every family who just had someone diagnosed as being on the spectrum should get a welcome basket.  In this basket would be endless supplies of coffee and fidgets, ear defenders, sensory toys, weighted blankets and resources to call for help.  We should throw parties for people who were just diagnosed because they have brains which work in magnificent ways.  I am not ashamed of my diagnosis. My children are not ashamed of theirs.  We do not need a cure.  We do not need your sympathy or grief.  Coffee and dog walks, however, are always cheerfully accepted.  Carry on, friends.

I sincerely believe that all mothers are working mothers.  Period.  I don’t care if you work outside the home, inside the home or both, congrats, you are a working mother.  And, surprise, no one pays you overtime!

I am not at all complaining about my job.  Taking care of Boo Bear and Mouse is the best thing I have ever done.  I have worked retail, run an outreach ministry for the homeless, taught, tutored, nannied, and mothered.  Sometimes I did a whole bunch of these things at once.  I have no regrets about these things, either.  But, for now, I am an autism advocate for Boo Bear and Mouse and I work from home.  So, I was surprised when yesterday a relative left me a voice mail from her vacation down south.  She said that she was on vacation and thinking of me because “you are always on vacation.”  That phrase, probably well meant, stopped me cold.  I am on vacation?  Really?  Robert and I have had exactly two dates in the last 18 months.  We have ventured no farther than Duluth together in over a decade.  Though Boo did great at our Friendsgiving, he was awake that night until 3:00 am, and the Gloria got up at 4:00 am.  I was running on coffee and fumes the next day.  Add to that the fact that Robert and I always sleep with at least one ear open in case Boo has a seizure.  Our living room has a video monitor of Boo’s bedroom and our bedroom has an audio monitor so we can hear the first signs of distress.  We don’t sleep a lot around here.  I am not certain how Robert does it because he does not worship the goddess of the coffee pot like I do.  As my children will quickly tell you, their mommy is a coffee junkie.

So, gentle reader, please be kind to your fellow mothers.  All mothers are working mothers.  We run on love, coffee, grit, and the occasional thank you.  We don’t get paid in ways that show up in our bank accounts.  I am lucky as I get paid through the state to care for Boo, but this is only for 24 hours a week.  Some weekends, Robert and I work 24 hours a day.  Parenting autistic teens while being on the spectrum ourselves in not an easy task.  Fortunately, we love our task.  And, Robert gets to go to work at an office and talk to “adult people”.  But, please, do not assume that we are on vacation.  To be quite honest, we could not recognize a vacation if we saw one!  Peace out and be good people.

Hello from Harriet’s Hedgehogs and Autism Advocacy!  This month has gone by in a rush and it is hard to believe that it is already December.  We had an excellent Friendsgiving.  The day started out doing a Turkey Trot 5km with my friend LA.  It was her first ever 5 km and she rocked it!  I ran the race in 30:45, putting me just under a ten minute mile. Considering I am only 10 weeks out from spinal fusion, I was happy!  After the race, mass baking and cooking ensued. Counting my clan, we fed 14 people on Thursday.  There were plenty of traditional foods, as well as gluten and dairy free treats as well.  No one went hungry.  Mr. Boo did not choose to eat with us, but was happy to come in and out of the room, wrangle a piece of ham and then depart back into his man cave.  I did not expect him to eat with us, because that is very uncomfortable for him, but he made a pretty good dent in the ham.

So, what am I thankful for?  My family, my friends and my pets. The fact that I had a successful surgery and can begin running again.  That I have a Kung Fu belt test coming up this week.  That Boo has excellent services both at his school and in our county.  I am thankful for his PCAs who take time out of their busy lives to hang out with him and take him interesting places.  I am thankful for good mental health services.  The list could go on and on.

I know that there are people who pity me and Boo, who say our lives are hard, or that Boo is my cross to bear.  We do not need pity. Support yes, pity no.  We are not objects of pity or your feel good story.  We are just two autistic people living life to the fullest.  Thank you to all my friends who came to our Friendsgiving. Thank you to those who follow this blog.  Please take some time to exercise some self care during the next month.  Boo and I are cheering you on.

Hi all!  Boo Bear here.  Yesterday was weird.  First of all, Stevie (on of our dogs) had a seizure. He has not had one in over four years, so this really surprised mommy.  He seemed fine after it, just a bit more dopey than usual.  Gloria was very upset by it and Max ran away and hid.  After mommy got all the dogs calmed down there was a scratching noise at the door.  Mommy went to the door and there was a black and white pit bull mix sitting there.  Mommy opened the door and the dog ran in and jumped on our couch!  She was very friendly, clean, well fed, but had no tags or collar.  At this point I decided to stay in my room because four dogs in one small house is a bit much!  Mommy took the dog’s picture and put it up on social media. Then, she put the dog on a leash and walked all over the neighborhood, hoping the dog could tell her where she lived. No luck. Mommy and that dog walked and walked, but they could not find anyone looking for a dog and the dog could not find her home.  Back at home, Mommy decided to call the vet to see if they could scan the dog for a microchip. Turns out, they could!  So, the dog, whom we were calling Foreigner, and mommy went to the vet. The vet tech scanned her and it turns out the dog’s name is Pippa and she lives one block over.  The vet tech called Pippa’s daddy who was very happy to hear the news and came right over and picked up his dog. It was a good reunion.  Mommy came home and now there were only three dogs in the house.  Honestly, I think that is enough.  The hedgehogs don’t really bother me because they sleep all day.  Gloria, on the other hand, tries to steal my snacks.  Sometimes, she distracts me by giving kisses and then steals the snack!  She is sneaky!  Anyway, after all that excitement I went off with Peter for the afternoon and had some lovely adventures.  He put some new pictures on my iPad that make it easier for me to communicate.  Mommy is now talking about getting a lawyer for help with guardianship issues.  This means that when I turn 18, I am going to be with mommy and daddy forever!  It also means that I graduate this May and then go to the transition school next door.  These are all really big changes, but I am a Boo Bear and I prefer to live in the moment.  After all, there might be treats involved.  Take care and be good humans.  Ta-ta.

Hello there!  This is Gloria and I am 10 pounds of Australian Shepherd spunk and fluff.  Usually, this is mom’s website, but she is busy with coffee and Boo Bear, so I took over.  Please excuse the lack of dew claws. Mom adopted me when I was 8 weeks old and only 4 pounds.  Even then, I had very strong opinions on things.  There are two big dogs in the house, Stevie and Max.  Something is wrong with Stevie’s eyes, and he tends to run into things, but he is lots of fun to play with.  Max likes to lie in his crate, or as mom calls it his “man cave”.  When he is not out running with Mom he takes lots of naps. Mom says he is older and I must be respectful of his wants for privacy.  I think he is a big grump and try to steal his treats.  There are four humans in my house: Mom, Dad, Mouse, and Boo Bear.  Mouse loved me from the start, but when Mom brought me home Boo Bear cried.  He was afraid that Mom would love me more than him.  Mom assured him that this was not the case and I gave him lots of kisses. He tasted salty!  Now Boo Bear and I are friends.  He lets me sit in his lap and does not seem to care if I steal his food. Mom says this is not good, but I think he just likes to share with me!  I jump on his bed every morning to help wake him up and we have a quick snuggle.  After Mom gets him up and dressed we put him on the bus. It is big and yellow and sometimes the aides get off the bus to say hi to me!  There was once another doggie in the house and her name was Rosie.  Mama says she went over the Rainbow Bridge two summers ago.  She was Boo Bear’s service dog and took very good care of him.  I don’t know if I will be a service dog or not when I grow up.  I am only four months old and have a lot of growing and learning to do.  Right now I know my basic commands.  I know sit, down, come and here.  I love to play fetch.  If I don’t feel like coming in the back door I scoot under the fence and run around to the front door. This way, I don’t get trampled by the big dogs.  Mom says I am a scamp, but she always give me biscuits when I come right away.  I like this house and I like helping Mom take care of Boo Bear.  He is lots of fun and he has a great laugh.  He does not talk like most humans seem to, but he is very expressive.  He also uses sign and an iPad to help him communicate.  I told him he should bark early, often and loudly to get what he wants, but I have yet to hear him bark. Maybe his barker is broken, I don’t know.  It is time for me to go harass Stevie, so I will sign off now.  Talk to you later, Gloria.

Boo Bear and I had a great day on Saturday.  We were eating breakfast when there came a knock at the door. I vaguely recognized the woman on my porch and then realized that she was Erin Murphy, our representative!  I have voted for and supported her for the last decade.  Ten years ago, Boo Bear eloped and got loose in the neighborhood. As I was running out the door I was met by a lady delivering political leaflets.  She said, “Hi, my name is Erin Murphy and I am running to be your representative.”  “Hi”, I replied.  “My name is Harriet Herndon and my seven year old with autism just took off.”  Immediately, Erin jumped into action.  She said she was an emergency room nurse and familiar with spectrum kids. She put down all her papers and she and I went up and down the street, calling for Boo and banging on doors until we found him.  Whew!  I have been her proud supporter ever since.  I mentioned this memory to her last Saturday and her face lit up.  “I remember that day!  How is he doing now?”  I told her he was doing fine and would graduate high school in May.  She gave her congratulations and said that she is now running to be a senator.  I told her this was great news and she absolutely had votes from Robert and myself. She asked if we were receiving enough services for Boo.  I said that we were very blessed to live in St. Paul, and very grateful for the services which Boo receives.  I said that services are not easy to come by, one has to be a good advocate, but St. Paul is a great place to live.  She was happy to hear this and continued on her way.

Breakfast over, Boo and I met up with A and went to Ran Ham bowling.  We got Mr. Boo a big plate of fries and let him roll balls to his hearts content. He was so happy, grinning ear to ear and giggling to himself.  The MN football game was playing on the big screen and the Gophers were happily defeating Penn State.  Ravi’s game and the football game ended at about the same time, amid cheers from all of the fans, some more inebriated than others.  It was a perfect afternoon.  We also learned that Boo has a weakness for Ranch dressing and will do shots of it when given the chance.  Who knew?

So, this is just a snapshot of our weekend, a brief respite of fun before a very busy week. Boo has his final IEP meeting of his high school career tomorrow.  We will be talking about graduation, transition, guardianship, and a whole host of other issues.  Serious stuff.  Adult stuff.  But in the back of my mind I hold a mental snapshot of my son, bowling, eating French fries, and having the time of his life.

 

Happy Halloween from an autism mom who unabashedly loves the season!  When I was teaching, I brought out my Halloween decorations on October 1 and kept them coming for the entire month.  Now that I am out of the classroom, I inflict costumes on my dogs and hedgehogs. If the treats are good enough, they will usually let me have my way.  Boo Bear woke up sick this morning, so he will probably be helping me pass out candy tonight. Mouse is going out for loot with a friend.  I have no problem with teens showing up at my door for candy.  If they want to hang onto that last vestige of childhood, let them!  Toss them a Snickers bar!  Compliment their costume.  After all, it is only one night a year.

My bigger new is that as of October 28, Boo Bear is nine months seizure free!  We are over the moon happy about this.  For now, we have him on the right cocktail of meds and cannabis and he is a seizure free, happy young man.  Coming up in mid November is his last IEP meeting as a high school student.  It is at 9:30 in the morning.  I think this should be a celebratory affair.  Surely is it not too early in the morning for a margarita? The only question is, will staff want their glasses salted or not?

Enjoy your last days of fall. I see our neighbors in Wisconsin already have snow and we have some in our forecast as well. Welcome all the little witches and goblins to your door tonight and be generous with the treats. To quote my dear friend A, “Be good humans.”

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.