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

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.

 

Elopement

To someone not familiar with ASD this might call to mind a young couple, madly in love, who dash off under the cover of darkness and get married.  In the ASD world, it means something completely different.  I call it “getting happy feet”.  Lots of our kiddos on the spectrum are prone to elope, wander,hit the road,or head out on their own, with absolutely no sense of danger.  Step back in time with me to early June 2016.

Per my usual routine, I got Boo Bear’s meds ready that morning and headed into his room.  I paused for a moment in the doorway and suddenly realized that there was no familiar lump in the bed.  In fact, he was not in the room at all.  The window was open and Boo was gone.  My first thought was kidnapping, but then as I looked out the window (about a good 8 foot drop) I realized that he had high tailed it.  My next move was to call 911.  I called them and explained that I had a nonverbal escape artist on my hands.  He wears a LoJack safety bracelet which sends out a signal and can be picked up by receiver carried by the police or fire fighters.  I passed this information along as well.  The person on the other end took my information and put me on hold for a moment, I could hear chatting in the background.  When she came back on she began asking if he was wearing blue footie pajamas and a red t-shirt when he vanished.  I confirmed that he was.  At that moment a police cruiser pulled up in front of the house.  I told the dispatcher a cop had arrived and she told me to hang up.  I ran down the steps with my heart in my throat.  A young woman met me on the lawn and said, “Your son is at Children’s Hospital.”  I almost fainted.  She followed by saying, “He is fine.”  I decided not to faint, but was feeling oddly light headed.

Apparently, Boo had pushed up the window, popped out the screen and jumped out the window without a scratch.  He then headed up the road to Super America in a quest for Sour Patch kids.  Miraculously, he crossed a busy road unscathed and went into the store.  The manager thought it odd that a non verbal kid in pajamas had just come in and was raiding the candy.  She pulled him aside, got him some candy and juice and called the police.  Since his Lo-Jack ankle bracelet was under his footies, no one saw it.  Boo  could not tell them his name, so the lady cop took him to the ER at Children’s.  He decided he really liked his ride in the police car and the lady cop and was quite charming, or so I am told.  By the time Robert and I got to the ER, there was quite the party going on.  We entered a room where Boo Bear was holding court to two police officers, several nurses, and a young MD.  He was having a find old time and seem delighted that was had joined the party as well.  He did not have a bump or a scratch on him.  His vastly relieved father and I took him home, dressed him for school and took him to Bridge View.  He happily took his teacher’s hand and trotted off, leaving his father and me to collapse in a heap.  As of that afternoon Boo’s window had a new screen and three different locks on the window.  He has not made an out the window escape since.

What can we learn from this?  Kiddos on the spectrum like to elope.  They are often attracted to water.  Supposedly, elopement begins to decrease at about age 10, but at 15 Boo Bear shows no signs of slowing down.  If you have a wanderer the best advice I can give you is to get a GPS of some kind of a Lo Jack safety bracelet.  Before anything happens, give a picture and a description of your child to the local police.  Explain to them that your child is on the spectrum and will probably not respond in a normal manner and may not even respond to his name.  We are lucky that in St. Paul we have a well trained police force.  One of the officer has 2 sons on the spectrum and has trained his coworkers on how to approach and work with individuals on the spectrum.  Sadly, many cops in other cities lack this training.  If you feel that your police force does not have the training to deal with individuals on the spectrum, suggest to them that this is necessary.  Who knows, they might be the one that rescues your child when he decides to elope.

Autism Doesn’t Sleep

Autism does not sleep and neither do parents.  Granted, Boo Bear sleeps much better than he did when he was tiny.  Honestly, until his sister was born I had no idea that babies slept.  At this point he sometimes sleeps.  Last night he did not feel like it.

Yesterday was a good day for the boy.  He went on the green line to the Mall of America with his PCA.  He loves to go to the mall and just walk and look at things.  He loves being on the light rail because it moves fast. All in all, a perfect outing.  I thought this would tire him out.  I thought wrong.  By 8:00 pm he was starting to slow down and I gave him his evening meds.  Not long after this, I gave him a bath.  He spent some time after his bath happily bouncing around and then let me know he was ready for his bed time treat.  We gave him a treat and turned off the light.  Things did not progress as we had hoped.  “Sleep no more, MacBeth hath murdered sleep”, or in this case it was Boo Bear.  Instead of settling down, he perked up.  He bounced about, hooted, flapped, and sang.  He needed multiple trips to the bathroom and three clean pull-ups.  Somewhere around 11:00 I went to bed, thinking I could at least be prostrate even if I could not sleep.  Robert hung out in the other room working on his laptop.  The hooting, flapping, and banging continued apace.  Somewhere around 2:00 am I was aware that Robert was opening and shutting both the front and back doors and dogs were running around.  I got up to find that Rosie, Boo’s retired service dog, had discovered that the back gate was unlatched and had taken off for a night on the town.  I stood on the front steps rattling a box of Milk Bones and calling.  No luck.  Robert went around the block one way and then the other calling her name.  No luck.  Blearily, I pulled on clothes and shoes and decided to head out into the dark.  I put Max on a leash and had just made it to the back gate where I was greeted by a very happy Australian Shepherd.  Rosie had returned and she was very pleased with herself.  She strutted her way into the house, wagging as she went.  Now my house was filled with a hooting, flapping Boo Bear and a wet happy dog.  We went back to bed.  Ravi continued to hoot, flap, and sing until Robert got up for work.  After Robert staggered out the door, I made myself some strong coffee and gave Boo Bear a bath.  He happily bathed, ate approximately his weight in graham crackers, and fell asleep in our bed, glasses on.  A few hours later, Robert brought home lunch.  Ravi continued to snore.  It is now 3:00 in the afternoon.  Ravi is still conked out.  I took care of dishes and laundry.  Part of me wants to wake him up so he might sleep tonight.  Part of me just wants to enjoy the quiet.  So, I guess Autism does sleep, but only on random occasions.

The Big P

Sometimes, living with a child on the spectrum is delightful.  Sometimes it is surprising or unexpected.  Sometimes it can be downright disgusting. Let us discuss The Big P.  P can stand for many things, but in this case it stands for poop.  I have never met a parent of a child on the spectrum who could not chime in with a poop horror story.  Yes, we love our kids to the moon and back but not their poop!

As I have discussed before some of our kids are sensory seekers and some are sensory avoiders.  Sensory seekers have an insatiable need to touch, feel, smell, and taste almost everything and sadly, this includes poop.  Fecal smearing is very common in ASD.  Clean up of aforementioned fecal smearing is very common for ASD parents.  When this trait of ASD cropped up in our household I was both disgusted and ready to die of embarrassment.  My husband and I were both revolted; Boo Bear was not bothered at all.

Lots of kids on the spectrum have gut issues.  Sometimes this can be remedied by diet, sometimes it is just the nature of the beast.  I have found that as Boo has grown, many of his GI problems have abated.  Many of our kids are slow to toilet train.  Often, they are just unaware of the sensation that they have to go.  Getting your child to do what he/she needs to do in the toilet can takes patience and time, and I am talking about years of patience and time.  Boo was two weeks shy of his 14th birthday before he suddenly decided that he was trained.  We had been working on this for years, but I had really given up hope that he would ever be reliably trained.  Well, my boy is full of surprises.  The road to this point, however, was not a pretty one.  During the day Robert or I would watch him like a hawk for certain furtive behaviors and take him to the potty at very regular intervals.  We kept him in pullups and had a pretty good idea of the schedule of his bladder and bowels.  This was tolerable.  Night time, however, was a whole different issue.  It was a rare night that Boo did not wake up at zero dark hundred, fill his pullup, and smear poop.  The results were horrific.  There is a reason he has minimal furniture in his bedroom.  My husband, Robert, is the unsung hero of poop cleaning.  My work starts earlier than his by at least 90 minutes, so he is the one who gets the household up and running in the morning.  He is the one that got to deal with cleaning up Mr. Boo and the bedroom floor.  We went through a lot of mops.  In short, it was revolting.

So, what does one do with a child that poops everywhere except the toilet?  You outsmart them and sometimes this can be hard.  We all know that our kids are not stupid.  The first step is keeping your child in his pajamas at night.  The first thing we tried was putting him in sleepers backward and using duct tape to cover the zipper.  This is enough to deter some children but not all.  It certainly was not enough to deter Boo.  The next step was to put him in sleepers backward, put duct tape over the zipper, tucking it over the top in the back, and then for good measure, putting a strip of duct tape around his waist.  Then, we would put a tight fitting t-shirt over the whole ensemble.  This also worked for a while, but was by no means perfect.  Obviously, something else was needed.  Enter the harness.  Robert is an engineer by trade and a problem solver by nature.  He drew a picture of a harness, much like the harnesses you use on little kids who ride the school bus, and showed it to a friend.  She has an industrial strength sewing machine and was able to create a harness with straps out of nylon strapping.  So, now we had a new bedtime outfit.  We would put Boo in his backward fitting sleepers, put the harness snugly on top of that and top it off with a close fitting t-shirt.  Just to assure my readers, the harness was not at all uncomfortable.  Many ASD kiddos like deep pressure and the pajamas, the harness, and the close fitting shirt provided that.  Poop smearing was prevented!  The mop and duct tape were mostly retired and everyone, except maybe Mr. Boo, was much happier.

So where are we today?  Though Boo is day trained, he is not 100 percent reliable at night.  Eventually he outgrew the harness.  About this time, we discovered special needs clothing, often known as anti-strip clothing.  I mentioned these in a previous entry.  These clothes, though a little bit pricey, are amazing!  At this time, Boo wears normal clothes and underwear during the day and is fairly trustworthy.  I cannot say this about him after nightfall.  So, when he goes to bed he wears the following: a pullup with a pair of underwear on top to prevent any possible leaks; one pair of footed pajamas, with the zipper going up the front;  one anti-strip jump suit with the zipper going up the back.  At the top  of the zipper is a piece of material that snaps over it, to discourage unzipping.  Finally, on top of this, he wears a snug fitting shirt.  The first few nights of this outfit he was very put out.  He was not uncomfortable, he was just angry that his strip tease and poop smearing activities had been thwarted.  We had several very loud and grumpy nights before he accepted his fate.

I would love to tell you that at this point our evenings are quiet and free of fecal smearing.  For the most part this is correct.  The outfit we happened upon through trial and error really works.  He still sometimes has accidents in the night and needs to be changed, but the poop stays in the pullup.  This does now mean, however, that he is a peaceful sleeper.  Sometimes, he can fall asleep immediately and stay that way for 11-12 hours.  Other times, he is up all night, hooting and flapping and bouncing off the walls.  Like many of his autistic peers, he does not have a regular sleep cycle.  In another entry, I will talk about sleep; getting your child to sleep and getting some much needed sleep yourself.  In the mean time, please chime in with your poop horror stories, your solutions to fecal smearing, or both.