Living Outside the Diagnosis Continued

For many children Halloween is a holiday that is looked forward to with huge anticipation.  As a child and even as an adult, I get ridiculously excited about it.  I start thinking about costumes in August.  When I was a teacher, I could not wait until October 1 so I could decorate my room for the holiday.  Yes, I am a bit obsessed.  So, I could not wait to share my excitement with my offspring.  To my utter shock Boo Bear hated Halloween and wanted to have nothing to do with it.  To his credit, Halloween probably does not make much sense to a person on the spectrum. 364 days of the year one is not supposed to go knock on random strangers doors.  That is against the rules.  People don’t normally wear spooky or silly masks on their faces.  And, isn’t there a rule about not taking candy from strangers?  So, to Boo, Halloween made no sense and he wanted nothing to do with it.  Mouse loved Halloween, so we would thoroughly enjoy dressing up and ransacking the neighborhood for candy.  Boo was very happy to stay home.

Last year Boo’s PCA came in costume on Halloween.  Boo thought that was a bit strange but okay.  D, the PCA, wanted to take him out for treats.  I was a bit dubious but agreed to let him try.  I put Boo in his Superman cape and let him go. I expected that they would be back in 10 minutes.  An hour later they returned with a bulging sack of treats.  I was amazed.  D said that after the first few houses Boo quickly caught one.  He would ring the bell, smile widely and sign for candy.  Some nice adult would put treats in his bag.  He would smile again and then go on to the next house. Magic!

In my last blog I talked about Boo going to celebrate the birthday of a friend at MOA.  This same friend wanted to trick or treat with Boo.  Once again, Boo put on his Superman cape and headed out the door with his PCA, A.  They had a glorious time.  The boys were able to go up to the doors by themselves and sign for candy.  They received quite a haul.  The evening eventually wound down when Ravi was turning blue with cold.  Boo and A came home, tired but very happy.

So, this is just another example of living outside the diagnosis and Boo doing things that I had never dreamed that he would do.  Two weeks ago I never thought he would stay out late at the mall with friends.  Last week I was amazed that he willingly embraced Halloween in all its sticky glory.  I have said before and I will say again, the future has not yet been written.  No one can forecast the future of a child when they are three years old, no one.  All children are full of surprises and grow and learn at their own pace.  Next week Boo will compete in the state meet for his first Special Olympics.  I never thought that would happen either.  I will be sure to post all the details right here.



Mr. Boo Goes To Camp

There are lots of great things about living in Minnesota, even if you don’t like winters that last forever.  One of these things is The Autism Society of MN.  AUSM has many great resources but the only we look forward to every year is Camp Hand in Hand.  This is a camp just for kids on the spectrum.  Each camper has their own counselor and stays in a cabin with 10-15 other campers.  The cabin is divided up into lots of little rooms so there is some privacy.  Campers come in on a Sunday afternoon and stay until the following Friday.  Boo Bear attended for the first time last year and was eager to go again.  While he was at camp he rode horses, played in the lake, rode the boat 3 times a day, did a ropes course and trust walk, attended music therapy (he loved playing with the shakers), cooked out and decided that maybe s’mores were okay after all.  To keep helicopter parents from continually texting the counselors, parents can log into a private Facebook page.  New pictures of the campers are installed multiple times a day.  In every picture Mr. Boo Bear had an ear to ear grin.  I missed him while he was away but I was happy knowing that he did not miss me!

It was during Boo’s camp week that Robert and I celebrated our 16th wedding anniversary and enjoyed our second ever vacation.  Our first vacation was last year when Boo attended camp.  We have since decided that vacations are a good thing and would like to have at least one a year.  It occurred to me that this was really the first time in our marriage that Robert and I had time to relax, enjoy each others company and play.  Boo Bear arrived on the scene when we had only been married 10 months.  We knew we wanted kids and were thrilled but were also surprised at how quickly I got pregnant.  Boo was born early and with complications.  His first few months were rocky.  Though we loved him dearly, he was not an easy baby.  At about the time I conceived his sister, I was beginning to have worries about his development.  His sister was born 2 years and 1 week after he was.  He was diagnosed when she was only weeks old.  Suddenly, I had a newborn and a newly diagnosed toddler who refused to sleep.  From then on life was a blur.  I was a wife, a mom of two very young children, a teacher, and was trying to learn as much about ASD as possible.  I seemed to be constantly running with Boo from one therapy to another, towing his sister along with us.  Thankfully, she was a very mellow baby and was more than happy just to hang out with mom while Boo attended all of his classes, therapies, doctors appointments, etc.  When I did have any down time, usually between 3 and 5 am I was on the computer researching everything I could about Boo’s diagnosis.  This went on for years.  Gradually, things got easier.  Boo started school.  I hired some wonderful PCA’s to help us with him.  He learned some skills and seemed happier.  But, I never imagined that there would be a time when I would not have him right by my side.

Fast forward to his 8th grade IEP meeting.  There was the usually table of professionals, including a woman named Wendy.  She had taught spectrum kids for decades, had observed Boo and wanted to tell me about Camp Hand in Hand.  She said it would be the perfect way for him to spend a week.  I reminded her that he was a flight risk, non verbal and not night trained.  She brushed this off and said that the camp was open to all kids on the spectrum, regardless of ability.  I was intrigued and when registration for camp opened a few weeks later I signed him up.  When the week came we drove Boo up north.  As we pulled into the camp he got very excited.  I was worried he would not want to leave me but he took his counselor’s hand and walked off without a backward glance.  Quite clearly, he felt at home.  So, Robert and I took our first vacation of our marriage.  It was not a terribly active vacation as I was recovering from knee surgery, but we made the most of it.  This year was even better.  I had 2 fully functioning knees and happily tromped all over Duluth and spent time on the shores of my beloved Lake Superior.  5 days later we went to pick Boo Bear up.  He seemed taller and older.  He agreed to go home with us (I had come armed with a bag of Swedish Fish in case I needed to bribe him into the car) but seemed subdued.  The next day he was a bit off.  There were no horses to ride!  There were no boats to take him zipping around the lake!  The horror!  Now that he has been home from camp for 3 days he is returning to his usual bouncy, zany self.  He can go to the pool, attend Special Olympics, take long walks and play with the dogs.  Life is not all bad.  I am certain he will be delighted when school starts and there is more structure to his days.

When Boo was diagnosed many people gave me gloom and doom predictions about how ASD destroys marriages.  The favorite number bandied about was 80%.  I have since discovered that this claim is bogus.  Despite what people may tell you, ASD does not cause divorce 80% of the time.  Yes, it can put a strain on a marriage in multiple ways, but it is not a sure fire trip to divorce court.  Even though it seems like our kids will be toddlers forever they eventually grow up.  They learn some skills.  They are ready to be away from their parents for short amounts of time.  This is a great time for parents to reclaim their marriage.  Robert and I had been tag teaming for so many years that we rarely had any alone time together.  It was a lovely to discover that when we still loved each other, still liked hanging out together, and when the opportunity arose, still could have a lot of fun.

So, my reader, if you are in Minnesota, I urge you to learn about Camp Hand in Hand.  Your child will have the best week of his summer there.  If you are not in Minnesota, I urge you to see what resources are possible.  It is time for you and your child to have a little fun.

Knowing when to fight

Ask any parent who has a child on the spectrum and they will tell you about the constant fight to get FAPE, services, respite care, etc. for their child.  The struggle is never ending.  From what I have heard from parents who have offspring that are older than Boo, the struggle gets even more intense after the child turns 21 and graduates out of the system.  We do not have to think about this for another six years, but the upcoming battle is never far from my mind.  This week gave me two good examples of when it is time to fight and when it is time to call it a day.  In an earlier post I talked about tooth care, nail care, and sensory issues.  I mentioned that Boo had an upcoming dental appointment.  Well, long story short, I cancelled it.  The other day I looked at Boo’s nails and realized that they were fast becoming talons.  Usually, I wait until he is in the bath and good and sleepy before I tackle them but they were clearly at critical mass.  So, I cut his nails.  He was not a happy camper.  Despite my being very careful he began to wiggle like a spring loaded squid.  He fought and he squirmed.  I made it through to the very last nail without nicking him when suddenly he jerked loose and the nail got cut back to the quick.  This was immediately followed by a flood of crocodile tears.  He was devastated and quickly starting to hyperventilate.  He spent a long time in my arms sobbing.  Yes, this is the same child that broke two bones in his arm and never even whimpered.  Apparently, broken bones are one thing but a snagged thumb nail is much, much worse.  I felt horrible.  I decided that I was not going to put him through the terror of a dental appointment without the help of some anti anxiety meds on board.  Unfortunately, his psychiatrist was out of the office for the week and I was unable to contact her.  So, no meds.  Without even pausing a beat, I cancelled the dentist appointment.  I will reschedule it when I have some medication that can help him cope with the situation.  Yes, I am aware of calming techniques, massage, sensory toys and a range of other things in my arsenal of tricks.  Sometimes these things work.  Sometimes they do not.  I know that they will not help at the dentist office.  Boo is getting to be a big, strong kid and very hard for me to control.  Luckily, he is also very docile and easy going, but a trip to the dentist without some medical help is just a recipe for disaster.  So, this was not the time to fight.

That was yesterday.  Today is a new day and a new issue.  Boo is on a waiver from the state that pays for all his medical expenses, lets us send him to sleep away camp, and also pays for his PCA (personal care assistant) help.  Basically, I am given a set amount of money each fiscal year and it gets divided up between paying his PCAs, camp, therapies, etc.  Recently, we had a wonderful new PCA come to us.  She works at Ravi’s school and they adore each other.  Immediately, we put in all of the paperwork necessary to hire her.  That is when things slowed to a stand still.  I got a notice from our agency that all her paperwork was in and I should have a date of hire shortly.  That was two weeks ago.  I gave the company a few days and then sent an email of inquiry.  I was told that the paperwork had to be okayed by Boo’s county case manager.  That struck me as strange, but I called up Jon, our trusty county case manager.  He told me that he had nothing to do with the hiring process at all. I thanked him and dutifully sent this information to the agency.  They responded by saying that maybe the paperwork needed to go to another case manager.  There is one other person with whom I have worked briefly that might qualify as a case manager.  I emailed her.  She promptly responded that this was not her job, either.  This was pretty much what I thought.  So, I emailed the agency again, saying that neither of these individuals had anything to do with the hiring process of the PCA.  I got a prompt email back from the agency saying that she really did not know what to do.  I was not amused.  In the course of about 10 minutes I sent her 8 emails of things that I thought she could do to help my PCA get hired.  I wanted to know exactly whose desk the paperwork had landed on so I could call and email them, too.  Not two minutes later I got an email from the agency saying that my PCA had been hired.  As I suspected, the paperwork had just been sitting on someone’s desk for two weeks and they had not felt like dealing with it until I lit a fire under them.  So, today was a good day to fight.  I will add that I was very civil the entire time, but unrelenting.  I had a good person to hire, she was depending on me for a job and there was no good reason why she could not have the job.

So, sometimes it is a day to fight and sometimes it is a day to lay low.  I got my PCA hired which makes her, me and Boo very happy.  I cancelled the dentist appointment and will not reschedule it until I have some pharmaceutical help in hand.  Ultimately, this will make Boo much happier and hopefully we will have less of a wrestling match to get him in the chair at the dentist’s office.  Being an autism mom means being a mama bear, but even a mama bear has to choose which battles to fight on any given day.


Self Care

One thing that parents of special needs kids are told over and over again is to focus on self care.  If we do not care for ourselves we cannot adequately care for our children.  You know the directions they give you when you are flying, to put the air mask on yourself first and then on your child?  Right, the same idea applies in real life.  Yet, it doesn’t.  When you have a child with special needs self care usually goes right out the window.  We can go for days without taking a shower or find ourselves reheating the same cup of coffee over and over again because we never get a chance to drink it when it is hot.  Our houses are usually sensory friendly and would make an OT proud, but they often look like a bomb has just gone off.

Robert and I staggered zombie like through the first few years of Boo’s life.  He did not sleep and had to be watched constantly.  He had a newborn baby sister that needed our care.  It was not uncommon for me to doze off while sitting a stop signs only to jerk awake again when the traffic began to move.  I am amazed neither of us had an accident during those years.  We got through it, but I am not really certain how.

There are few things that have sustained me over the years.  I have been a long distance runner since the mid 1980s.  I run marathons and ultra marathons.  This means that I train at crazy times of the day and night, or often while Boo is in class or therapy.  I may be flat out exhausted at the start of a run but I always feel better when I am finished.  Another helpful thing is piano.  I have been playing the piano since I was a kid.  A few years ago my daughter began taking lessons.  I really liked her teacher so I began taking lessons again, too.  It was glorious.  I can take all of the good, the bad and the ugly emotions I have and pour them into my music.  It is a perfect release.  Not long after I began taking lessons Robert started, too.  He had no musical background but fell in love with it as quickly as I had.  Though neither of us has as much time to practice as we like, it is a wonderful release from the tensions of the day.

My latest foray into self care was going to the movies.  I probably go the movies about 3 times every 5 or 6 years.  I don’t sit still well, it can be hard to find care for Boo Bear, and movies are expensive.  Then, Wonder Woman came to the theaters.  Action movies are really not my genre, but I was intrigued by a movie that was made by a woman and starred strong, powerful females.  Besides, all of my girl friends were flocking to see it.  So, I did something completely out of character; I called up my friend Amanda and asked her to go see the movie with me.  She readily agreed and off we went.  Hands down, we loved it.  Afterwards, we went out to dinner (also very unusual for me) and spent 2 hours talking about the movie.  We decided we had to go back the next weekend and take Mouse and her girlfriend.  When I got home I told Robert I could not remember the last time I had had so much fun, or had gone out for movie and a dinner.  He gave me a blank look and said, “You never go out for out for a movie and dinner.”  Point well taken, he was right.  So, the very next weekend Amanda and I took the girls out to dinner and to the movie.  There was only one very intense scene where Mouse ended up in my lap but other than that, the girls thought the movie was “epic”.

Honestly, when Boo was little I could not imagine getting away for 4 hours to enjoy a movie and dinner with a friend.  I simply did not have the time or the resources.  Now that he is 15, I am beginning to get a glimmer of what people in the outside world like to do. These are ordinary things, like meeting a friend for coffee, or catching dinner and a show.  But, these are things I could not dreamed of doing a few years ago.

So, self care is important and something we are guilty of shoving to the back burner.  We push and fight and scramble to help our kids have the best resources and the happiest most productive lives possible and in this rush we forget our spouses and we forget ourselves.  In another post I will talk about spouses and how to keep a marriage afloat in the midst of ASD, but not today.  Today, I just want you to think of something that you would like to do for yourself.  It could be something as simple as painting your nails or taking a bubble bath.  It could be going to see a new movie with a friend.  It could be a lot of things.  But, think of something that you can do that is just for you.  This is not selfish, this is necessary.  By doing this you will be a happier person and a better parent.


Autism and tooth care

Probably one of the tougher things for kids on the spectrum is having someone mess with their teeth.  Most of our kiddos have a lot of oral defensiveness.  It took a long time and many sessions of OT before Boo would willingly let me brush his teeth.  He just did not like it.  At age 15, I still brush his teeth.  To promote independence I let him try on his own first but mostly he just likes to chew on the brush.  After I let him fiddle around I get in there and give his teeth a thorough yet gentle scrubbing.  Over the years this has become less of a battle and more of a bedtime routine.  It helps that school also has kids brush their teeth after lunch every day so mom is not the total bad guy.

So, tooth brushing is okay (don’t even get me started on flossing) but going to the dentist is an ordeal.  I am trying to psych myself up because Boo has a dental cleaning scheduled for next week.  I can’t blame the kid, I hate going to the dentist too.  I don’t like the way the office smells or sounds, and I certainly don’t like having foreign objects put in my mouth.  The only way to get me through a routine filling is having nitrous oxide on board, otherwise my anxiety is just too high.  I did not realize how great laughing gas is until this year and am an instant convert.  But, nitrous is not not enough to take the edge off for Boo, even for a routine cleaning.  We have a wonderful dentist who is very patient with him.  She has examined him while he has been lying on top of me, with him between the two of us with his head in my lap, and about every other position known to man.  Nothing phases her.  So, between the two of us we can usually make it through a routine cleaning though it really stresses poor Boo out.  Fillings are an entirely different matter.  Luckily, Boo has good teeth and has only needed fillings twice in his life.  To get his teeth filled he has to go to the hospital and be put under complete anesthesia.  It is an all day process that wipes both of us and our pocketbook out.

So, how can you make dental visits a little less traumatic?

  • Start going to the dentist with your child when they are still a toddler.  The first few times,  just have them sit in the chair and have the dentist look at their teeth.  Keep it low key.  Immediately afterwards do something fun so your child will have a pleasant association with the visit.
  • Try social stories.  Boo does not really like social stories but other kids need to have them and find them very helpful.
  • Find a patient dentist who understands the needs of kids on the spectrum.  If you are not certain how to do this, look in the directory at either Autism Society of MN or Autism Speaks.  Both are great resources for all sorts of things including friendly dentists.

So here we are, staring down a dental appointment for next Friday.  I am not looking forward to it.  If Boo knew it was on the calendar he would not be looking forward to it.  But, it must be done and the hopefully we will not have to come back for another six months.  If you have any ideas about how to make dental visits less traumatic, or have a technique which works with your child, by all means please chime in.  We would love to hear from you.




Play is something that we all need to indulge in, particularly when we are children.  Play is how children learn about their world.  It is also something that our friends on the autistic spectrum may not know how to do intuitively.  Sometimes, play must be taught.

When your child is first diagnosed there is often a flurry of trying to get him/her into the right classes, therapies, feeding clinics, etc.  These are all necessary things but sometimes we over schedule our kids and forget that they need time just to be kids.  I am just as guilty of this as the next mom.  I clearly remember the summer that Boo was five.  He was is summer school, horseback riding, friendship classes, OT, and speech.  I think I spent all summer in the car driving him from one appointment to the next.  There is such pressure on parents to get in all the therapy that we can when our kids are little and the brains are still plastic.  I was told over and over again that if Boo did not start speaking before the age of five he would never speak at all.  Granted, this was 2007.  Talking to one of his PCAs recently, who is also a SLP, she was horrified that a specialist would tell me this.  For one thing, the information is wrong and another thing it made me feel horrifically guilty when Boo did not begin speaking that I had just not tried hard enough.  Maybe it is easier for kids to gain speech if it happens before age five, but that is not a hard and fast deadline.  Kids develop and speak, or don’t speak, at their own rate.  Anyway, back to the summer of 2007.  I had Boo in every therapy under the sun and it was just too much.  By August he was fried and so was I.  We went to my parent’s 40th anniversary out of town and had a week off.  It was only when we were out from under that I realized the pressure that we both were under.  Ultimately, it was just not worth it.  I think ESY (extended school year) is a great thing because it keeps our kids current on the skills they fought so hard to learn during the school year.  But, ESY is also a lot of fun.  The kids play outside, swim, cook, attend music classes, and work on their IEP goals.  It is a nice mix.  If there is another activity that your child likes to do after school I would recommend that as well, but please don’t over burden him/her.  Children, like all of us, need time just to chill, to relax, to play.

At this point Boo has a nice summer schedule.  He attends ESY from 8-2 and then spends several hours hanging out with his PCAs and sometimes other kids.  They ride the light rail, go to the mall, go to the zoo or go to the beach.  They learn how to interact with the community.  One of our lovely PCAs has a brother who is the same age as Boo and is also on the spectrum. Alyssa decided to take them bowling one Saturday evening.  Judging from the pictures that she texted me all concerned had a wonderful time.  It hit me that this was so incredibly right.  Here is was, a Saturday night, and my teenage son was out bowling with a peer.  He was grinning ear to ear.  This is what a neurotypical teen might be doing on a Friday night, hanging out with a friend.  This was a first for Boo.  I nearly wept for joy and thanked Alyssa profusely.  She said that there were many dates to come and both the boys had a wonderful time.

In the rush to get all the possible services we can for our kids we forget one important fact: they are kids first.  Yes, they are on the spectrum, but they are kids first.  And, like all kids, they deserve to hang out with their peers and do fun stuff, like go bowling or to the beach.  Childhood is fleeting, kids grow up fast.  I want Boo to have good memories of going to the zoo or the beach with friends, not being hauled from one therapist’s office to the next.  In a sense, childhood is sacred.  My child needs services to help him grow and develop but he also needs time just to be, to chill, to hang out with friends.  My goal for him this summer is to honor this time.