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.

How do I get my child to keep his/her clothes on?

Hmmm, a good question.  Many little kids, on the spectrum or not, think clothing should be optional.  After all, we are born without clothes, right?  We made it nine months in the womb, happy, well fed, swimming around in amniotic fluid, totally naked.  No one looked at us on an ultrasound and gasped at our nudity.  But once we are born, society (unless you live in a nudist colony) expects us to wear clothes.  There are days I hate clothes.  There are days Boo hates clothes.  But we live in Minnesota where it is cold 8 or 9 months of the year, so we need them. So, what is a special needs mom supposed to do?

  • Cut out tags and labels, they are itchy.
  • Find socks without seams, seams are evil and they never line up right.
  • If your child has a favorite color (Boo loves the color red) buy clothes in that color.
  • If you find an article of clothing or a brand that your child tolerates or even likes, buy lots of it!  Buy it in different sizes for your child to grow into.
  • Zippers and buttons are hard.  Boo can’t manage them.  Sweat pants, shorts with elastic waist bands, t-shirts that pull over the head are easy, and allow more independence in the bathroom.  Boo will wear jeans, but only if they are well washed and soft.  He does need extra help getting them on and zipped.
  • Hoodies are another favorite.  They are warm, soft, and if the world gets too crazy, one can always pull the hood up over one’s head.

Finding out what your child will and will not wear takes a lot of trial and error.  For this reason, I shop sales at Target and second hand stores.  I will not pay full price for a child who is growing like a weed and may flat out refuse to wear a new article of clothing.

Now, this part may seem odd, but getting your child to stay clad takes practice and patience.  If you want to play Beethoven’s Moonlight Sonata flawlessly, you have to work at it.  (I am still working on this one.)  It takes constant repetition to make things become a habit.  Little kids have to practice wearing and tolerating clothes.  So do bigger kids and some adults.  If you have a happy nudist on your hands, start small.  Tell your nudist that he/she has to wear clothes when he/she is out of the house.  Preferably, you should be out of the house doing something fun.  After all, going to the post office is dull, why should one keep one’s clothes on for that?  Going to Lego Land sounds much better.  Find something outside the home that your child wants to do, but make it contingent that clothes must stay on for the duration of the activity.  Sometimes, social stories about wearing clothes to Lego Land are helpful.  You can walk your child through the whole scenario of what you will see and do at Lego Land, while his/her clothes remain on! Also, it is often a good idea to bring along a back up pair of clothes while you are out and about.  Drinks spill, ice cream melts, catsup spurts out of hotdogs.  Boo does not mind stains on his shirts.  This might drive another spectrum kid out of his/her mind.  And, sometimes, no matter how well your child is trained, accidents happen.  Bring along another pair of pants and socks.  Obviously, your child is well past the stage of needing a diaper bag, but you still need to carry supplies.  I have found that a backpack works best.  Lots of people carry packs and this way your child will not be embarrassed.  While you are at it, stock the backpack with treats, a favorite toy, the ipad, noise cancelling headphones, or whatever else you might need to make the outside world more tolerable.

Inside the privacy of your own home, you can set your own rules regarding clothes; it all depends on what you are comfortable with.  Some families are just fine with nudity.  Others prefer that if their child is going to hang out in the buff, he/she does it in the privacy of his/her own bedroom.  On your own property, what your child wears or does not wear is up to you.  I will add one caveat: nudity is easier to handle if your child is fully toilet trained.  If your child is not trained, the clothes and the pull up need to stay on.  Before Boo was trained, the pull up would stay on, mostly, if he had clothes on top of it.  But, putting him in just a pull up on a hot day was a recipe for disaster.

Okay, so you have tried all these suggestions and your child is still blissfully nude.  What is a mom (or dad) to do?  Google special needs clothes.  There are companies out there that make fun, comfortable clothes that our kiddos can’t get out of (on Google or Amazon, try “anti-strip”).  Generally, they zip up the back and have a snap and a clasp over that.  They are close fitting, but great to play or sleep in.  A side note, these are also really useful for patients with Alzheimer’s Disease.  These clothes are a little on the pricey side, but well worth it if you have a kiddo who is adamant about being nude.

These are just a few suggestions that I have thrown out here.  I would love to hear from other folks about what they did to keep their child clad.  There is also the issue of how to keep your child in his/her pajamas at night, but that is a whole different post.  I will be talking about that in a few days.  In the mean time, if you have any clothes suggestions, please chime in.  Thanks!

Summertime

“Summertime, and the livin’ is easy.”  Ella Fitzgerald.  Though I love Ella, I don’t think she understood summertime in an autism household.  Like many kids on the spectrum, Boo loves his routine, he loves going to school.  He would go to school 365 days a year if he could.  Few things make him happier than seeing the big yellow bus pull up at our curb.  Yet, there are those pesky summers to deal with.  So, how does one cope?  Often through trial and error.

The summer Boo was 5 I had him scheduled in every activity known to man, and some only to women.  He had music therapy, horseback riding, swimming, friendship groups, the list went on and on. For a while he was happy and engaged, then he began to wear out.  He was less eager to set out every day. By August, both he and I were flat out exhausted.  I had to remind himself that he was only 5 years old and that that he was a child first and on the spectrum second.  All kids need down time, even kids that prefer to have their days highly structured.

So, what does this summer look like?  Well, it is still taking shape.  His last day of school is June 9.  He has the following week off, but his PCAs that are eager to hang out with him.  He turns 15 on June 18, and ESY (extended school year) begins the following Monday and runs for 4 weeks, 5 hours a day.  ESY is less intense than the regular school year.  IEP goals are worked on but there is time for fun things, too.  Students at his school go swimming, on field trips, spend lots of time outdoors and generally have a lot of fun.  After he gets home in the afternoons, his PCAs will take him out into the community.  In July, he has softball practice for Special Olympics one or two evenings a week.  The first week in August, he goes to Camp Hand in Hand, a wonderful sleep away camp, designed for kids and teens on the spectrum.  He went last summer for the first time and had the time of his life.  I had never been away from him for more than a day in 14 years, but he took his counselor’s hand and walked away with her without a backward glance.  During the week he showed no signs of homesickness at all.  He swam, boated (which he loved) rode horses and adaptive bicycles, walked for miles, had cookouts, listened to lots of music and in general, had a blast.  Without a doubt, it was the high point of his summer.  I am eager for him to have a repeat experience this year.  After camp, we still have about a month before the start of school.  During this time, I will follow his lead.  If he wants to go out, we will go out.  If he wants to hang out on his swing and listen to his ipod, then we can do that.  He adores his PCAs and they give him a break from being stuck with mom all the time.  He loves to walk to Jimmy Johns, Subway and the local ice cream shop.  He also just loves to go for walks and see what is going on in his world.  I completely understand this.  I have been a marathon runner since the age of 14.  I am not terribly fast, but I just love the feeling of movement and being out and about, running the streets and the trails, watching flowers come up, seeing the sun rise and set,depending on the time of day that I am out.  Ravi does not seem interested in running, but he can easily walk 8-10 miles in an afternoon.  For both of us, running and walking seems to help our ever present wanderlust.

So, how do you keep your sanity during the summer? Let’s face it, though we love them to pieces, our kids are a lot of work and need 24/7 supervision.  Ravi must be watched like a hawk or he will just wander off.  I would advise some structure, for the sake of all concerned.  If your child has ESY or some sort of class or social group, that is great.  See if there are local camps or Special Olympics in your area.  If you need an extra pair of hands, ask around at your church or synagogue; often you may find some very responsible late high school  or early college teens that would be more than happy to help out.  If you have PCA services, by all means, use them.  Summers should be about creating good memories; lazy morning sleeping in or lounging with mom, cool evening where your child can chase fireflies.  Though I often feel that everything should be a learning opportunity, this is not what Ravi wants.  He wants to be a teen.  He wants to sleep late, eat me out of house and home and lounge around.  He also likes to be out and about, but he, like all of us, needs his down time.

I am curious to hear what activities other people do during the summer.  I have both over scheduled and under scheduled my child, with interesting results.  This summer I am going to let him take the lead.  There will be some constants in the schedule, so he knows what to expect, but there will also be plenty of time for him just to be a teen.  Everyone deserves that, whether they are on the spectrum or not.