Who Ordered the Banshee?

For a person who does not like a lot of noise, Boo Bear can be one of the noisiest kids I know.  On one hand, this is good, it is easy to track him.  As long as I can hear him hooting and laughing I know that all is well in his world.  If he suddenly gets quiet I drop everything and come running because I know he is into something that he should not be into.  In an ASD household, silence is never golden, it just makes me really suspicious.

Like many kids on the spectrum, until he was on meds at age 4, Boo Bear was a lousy sleeper.  Well, put it this way, he just did not sleep, at all.  Robert and I were zombies for years.  After we got him on the right combo of meds he finally began sleeping.  On a good night he will sleep 11-12 hours.  But, once in a while, something sets him off and he pulls an all nighter. Last night was one of those nights.  Maybe it is because it is the end of vacation and though he has been super good for 2 weeks, he is ready to go back to school and his routine.  Maybe it was because of the super moon, which was so bright on the snowfall that it was still light outside at midnight.  His room does have blackout curtains, but he was up anyway.  Around 8:30 he indicated to me that he was ready to go to bed.  We did the usual bedtime ritual and got him tucked in, turned off the light and shut the door.  Boo decided it was time to start the party.  He bounced and hooted and flapped.  He made his infamous banshee noises.  We brought him out a couple of times.  Once he wanted more to eat, another time he wanted to use the toilet and get a drink.  Both times he willingly went back into his room, but he did not settle down.  From 9:00 pm until 5:30 am he bounced and shrieked happily.  At 5:30 I gave up on getting any sleep and headed for the gym.  I had a good workout, showered, got some coffee and headed home.  I walked in the door at 8:00 am and the banshee noises were still going strong.  I went in to see him and was greeted with a sunny smile.  He was delighted to see me!  I gave him his morning meds and he disappeared downstairs to spin like a whirling dervish on his beloved swing.  After half an hour of vestibular stimulation, he came back upstairs, ate ravenously and sank into a hot bath, where he is now.  I am hoping this settles him a bit.  This will definitely be a day where we get out and about.  At is is minus 7 F outside, we may have to be mall walkers, but that is okay.  I just need to get him out and moving.  I suspect that once he gets back into his school schedule tomorrow things will slide back into place.

So, I am curious, do other ASD families have pet banshees that only come out at night?  Do they come out more strongly when it is a super moon?  I am pretty sure that I did not order a banshee for the occasion and Robert said he did not, either.  This leaves one of the three dogs as a possible culprit.  My suspicion is that Max, our Springer Spaniel, probably figured out how to access Amazon and ordered a banshee. Okay, Amazon, the party is over.  What is your return policy?  I would like to return one shrieking banshee.  I will happily keep the kid, but the banshee needs to leave.  I just don’t have enough coffee at my disposal to handle another night of banshee noises.  Thanks!

All I Want For Christmas

All I want for Christmas is impeachment, but that is not what this blog is about.  I can still hope, though!  Tonight was a typical Saturday night chez Herndon. Boo was rocketing back and forth between the kitchen for food and his swing where he could properly hoot and twirl.  Robert and Mouse were off at a Christmas party, but Boo and I were rocking our inner introvert.  Eventually, I corralled Boo and headed him towards the bathtub.  His nails resembled talons, particularly one thumb nail that he was not letting anyone near.  I had my sights set on that nail.  Well, all I got was that one nail.  Boo was not going to let me near the rest of them.  I gave up and he happily let me shampoo his hair.  He is all about a good scalp massage.  While I was thus engaged I thought to myself, “All I want for Christmas is my kid to be able to cut his own nails.”  I realized immediately that I wished in vain.  He does not have coordination to button his shirt, let alone cut his nails.  Oh well.  I guess I am his life long nail clipper.  My awesome sister-in-law also has a kiddo on the spectrum with nail issues.  She got around this when she discovered that he likes mani pedis.  It is a bit expensive, but it solved the problem.  Somehow, I just can’t picture taking Boo to an upscale salon and turning him loose.

So, what do I really want for Christmas, both for Boo and for my family?  I want my home to be a peaceful, welcoming haven.  We don’t usually have family for the holidays, but I make a point to invite people over who also do not have family in the area.  I invite them to invite their friends.  Sometimes I only have a handful of folks, sometimes I have a  houseful.  This year Mouse is having a friend from school over.  Her parents are on the outs and she prefers to hang out over here.  Her mom and younger siblings are going to Mexico, her dad is staying home and she decided she would rather be with us.  Very good.  There is always room for another chair at the table and a place for more gifts under the tree.  So, I want peace.  I want Boo to feel this peace.  Christmas is hard for him because it disrupts the flow of school and his PCAs are not around.  He does not like to open presents and he does not like his schedule disturbed.  Over the years he has been better able to accept the changes that Christmas brings, but it is not his favorite season.  I don’t care that he does not want to open gifts.  I have a few things I hope he will enjoy and I will leave them out for him, unwrapped, so he can approach them at his leisure.  I want decent weather so I can take Boo out for the long walks that he craves.  He does not like to play in the snow or go sledding but he can walk for miles.  I want acceptance for my child and for all the other children and adults on the spectrum.  I want acceptance for those who march to the beat of their own tuba,  because their music is beautiful, too.  I want universal health care (yes I am getting a bit political here) so parents don’t have to worry how to pay for the therapies and doctors that their child so desperately needs.  No one should have to mortgage their home so their child can have speech and occupational therapy.  I want peace for all of you who so faithfully follow my blog, and for your children too, on or off the spectrum.  So, I may never see the day where Boo cuts his own nails, and it is not that important a wish anyway.  But, I can hope, pray and work for peace, in my house and in my neighborhood.  Won’t you join me and do the same?



Special Olympics

Last Sunday Boo participated in his first state level Special Olympics meet.  Over the  summer we participated in softball which he was so so about.  This fall we did bowling, which he loved!  He does ramp bowling with his PCA, A.  Ramp bowling is actually harder than it looks.  One has to line up the ramp and push the ball with one hand while holding onto the ramp with the other.  Boo needed a lot of hand over hand practice at first but as the fall went on I could see him gaining both skill and confidence.

The meet was last Sunday in Lakeville.  Boo was scheduled to bowl at 9:00 in the morning.  Like any teen boy, he loves his sleep so I did not know how he would do with being routed out of bed early on a weekend.  He does however, love A, so he was willing to get out of bed for her.  We loaded up the car with treats, the Ipad, extra clothes and anything we thought might  be useful and headed out.  Once we got there we found that the place was busy but not overwhelming.  We got in a little practice and found that this particular lane did not have the nasty curve that our usual lane had.  There were some preliminary announcements and the national anthem.  Boo stood for the anthem but for reasons known only to him,  sang along making pterodactyl noises.  Whatever, it made him happy.

Boo did not seem spooked about being in a new place and bowled really well.  His highest score in practice was an 80 and that is what he bowled in our first game.  In his second game he bowled a 98!  I was amazed.  I was also very touched by how helpful all of the volunteers were.  After our two games all of the athletes were taken into a different room with a podium.  I was further amazed when Boo was awarded a gold medal.  He stood on the podium with A to have the medal hung around his neck.  He looked a little surprised but handled it fine.

Special Olympics gave all the athletes a free meal pass but by then it was getting more crowded and busy.  There was a McDonalds just across the parking lot and we figured that Boo would be much happier going there and having fries, so off we went.  As we came in, the breakfast menu was still up.  Would I be able to get Boo his beloved fries?  I asked the teen behind the counter if it were too early to get french fries.  He gave me and Boo (who was proudly wearing his medal around his neck) a beautiful smile and said, “Ma’am, if you can wait two minutes I will get you and your son some fries.”  I thanked him profusely.  Several minutes later the three of us were at table happily eating fries.  Boo seemed very pleased with himself.

Now we are between sports for a bit.  Winter sports are either  floor hockey or skiing, neither of which I can see Boo enjoying.  However, A is taking him swimming and weight lifting at least once a week and his swimming is improving by leaps and bounds.  In the spring we will give competitive swimming a try.  I know that Boo really enjoyed his time bowling.  He will often go to the communication part of his Ipad and make it say, “Special Olympics, bowling.”  He will also ask for A, as she was the one that got him into the sport.  Though the season is over we will continue to bowl off and on.  It is something Boo truly enjoys and a nice way to pass the time on a cold or snowy afternoon.  To anyone out there who has a child on the spectrum or a child with special needs, I highly recommend you give Special Olympics a try.  I never thought that Boo would be interested in an organized sport, but once again my boy surprised me.  Little by little he is finding his tribe.


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.