Success Story: Skiing

I have been watching the calendar, seeing the days tick away, knowing I should post…wanting to post…but I haven’t been able to find the passion to write. There’s still so much to tell, so many things I wanted to share.  Our successes and our challenges, both are many.   But here I sit, on the eve of the final day of April and Autism Awareness Month, trying to capture and condense all that I did not get to say, but can’t seem to stay focused because my thoughts keep drifting toward my mother.  I fear I have short-changed us both.  I’m sorry for that.  This has not been an ordinary April, and life sadly keeps moving, even amidst tragedy.  

I am hoping that this period of time is the hardest.  I hope that when I see her name on the list of contacts in my phone, the ache begins to fade.  I hope that when I drive alone in the car, I can will myself to think of someone else, something else.  I hope that I can erase the phone messages I have saved and adjust to living without hearing her voice.  I hope that when Coleman makes his giant leaps in progress, I can eventually accept that she is not here to share the news.  I hope it will all get easier. 

As it is, I am trudging along, mostly fine, occasionally sad, except for this blogging thing.  I will come back to it, I know that.  But for now, I’ll end this year’s updates with my one favorite story of this entire year.  And next April will be here before we know it and I’ll have that much more to share.  I intend on keeping a private diary of updates on Coleman this year, so sure am I that this will be a BIG year for him.  And I’ll hold onto those entries until April next year and then publish an update everyday of April next year (everyday?)  That way, it will be like you lived the whole year right here beside us.  Lucky you. 

My favorite story of success this year, as many of you already know through facebook, was skiing.  Not because of its impact on everyday functioning or core skills, but because he worked so damn hard at it.  And because I can see now that yes, he can get there.  He will get there.  And because that gives this family something we can actually all do together.  And that is awesome.

We first tried skiing the winter before last, after a friend told us about New England Disabled Sports at Loon Mountain.  We met many great families there, and all of them had children that had learned to ski through NEDS.  So we signed Coleman up, and crossed our fingers that he would do well.  In retrospect, it’s easy to see why we failed.   Coleman was completely unprepared for skiing – we hadn’t done a lot of true prepping.  Sure we had talked a lot about skiing, about how it would be fun! How he would slide down a hill, yay!   But we didn’t talk at all about how it was going to happen, exactly what he would need to do to get to this fun thing, or most importantly, what he would need to wear to do it.   Coleman had never worn a mitten a day in his life – refused, even when we went sledding .  He had never worn a pair of boots, never worn a scarf, never worn anything but tiny ankle socks, never even zipped his jacket up all the way.  All of these things were big obstacles for Coleman but necessary to enjoy skiing.  So it was not surprising, really, that back during that first winter, we only saw a bit of early success, followed by complete misery.  It was an experience laced with many, many tears and lots of aggression from Coleman.   As we began our second season at Loon this year, I tried to brainstorm about how we could help Coleman to be successful – a rather late time to brainstorm I’ll admit, seeing as we were literally in the car on our way to Loon – but brainstorming nevertheless.  I came up with a plan.  A simple, basic plan that would take some time, but one that just might work.  So on the following morning, after Billy left with the girls to head over to the mountain, Coleman and I headed to the ski shop.  We were going to start with clothes – he had to be warm, or else he would never enjoy his time on the slopes.  We bought our first pair of what we affectionately called on that first day (and what they will now and forever more be referred to as) “Super Duper Ski Socks.”  We headed back to the condo, and with the help of a timer, began to desensitize Coleman to these warm, knee-high socks.  You may as well have chopped his leg off, such was the scene trying to get them on.  But once they were on, I promised him just one minute and they could come off.  He stared intensely at the timer, and as it beeped on the one minute mark, he screamed “TAKE THEM OFF!!!”  We repeated this fun little game every half hour, working our way up to three minutes, then four and after a couple of weeks (we had Coleman’s home therapist add this into her sessions 4 days per week) the socks were no longer a problem.  He didn’t love them – but he tolerated them.  And on we moved to the snowpants.  Same process – put on the socks, put on the snowpants, and then the timer:  two minutes, three minutes, etc until he was good with them.  And then we added the scarf.  And mittens.  And helmet.  And finally, the ski boots.   All practiced inside the house at first, and then walking down the street.  At the same time, every weekend we went over to the mountain to meet Billy and the girls at the end of their ski day.  We made sure point out all the skiers with their warm mittens, warm scarves, noting their big ski boots.  (We also lightly tried to get him to indulge us in some Apres Ski time, to sit by the windows with us while we snuck in Shocktop, but he largely wanted nothing to do with this.)    In all, it took us until the second week of February, half of the ski season now behind us, before we were ready to set out to the mountain.  We talked all about it for the week leading into the big weekend, that it was Coleman’s turn to ski, that we would go over to the mountain together, we would put on the Super Duper Ski socks, our ski pants, our scarf and mittens, and our skis, and we would go up and down the hill THREE times.  Just three, we promised.  As the morning approached, I was sick to my stomach.  We had invested a lot of time – I feared it would be a fail and all the effort would have been for nothing.  With prayers said and under a clear blue sky, we headed over and walked to the lodge.  “Time to get dressed!” I cheerily said.  “NO! You don’t like to ski!” he yelled.  My heart sank.  “It will be fun! Just three times, remember?  Three times and then all done” I offered cheerfully.  And Coleman, my handsome beautiful boy, sat quietly down as I got him dressed, and pleasantly walked out the doors onto the slopes.  It was enough, really, this completely willing, unstruggled walk onto the slopes.  We could have turned around right then and it would have been a success.  But he followed through, and with Abby, Emma, Billy and I all beside him, we went up and down Sarsaparilla Hill three times as promised.    And he never complained or cried or hit.  He actually seemed to enjoy it. 

We went most weekends after that, small bursts of time – 5 times up the hill, or 7 times, one or two  hours max and then all done.  We used a harness for some runs, and others I took off my skis and ran just ahead of him and had him ski to me.  And he was great, every time.  He struggled with understanding the concept of how to control his speed – and we struggled with how to teach him.  He didn’t grasp the “Pizza” concept – to point your skis inward to make a wedge to slow yourself – and we tried a few different approaches.  The NEDS team felt for the most part that he would just have to be on the mountain a lot – and that he would naturally get the feel for slowing by turning – but that it would take time.   And we have time. Lots of it.  The time we invested this year was worth every second.

I want to end the month on this wonderful accomplishment, because it is a very clear and strong example of what great things can happen when we really put our minds to it.   It highlights how Coleman, and kids like him, operate, and what they need to succeed:  Preparation and repetition.   We understand that now better than before.  The year ahead holds so much in store for Coleman, I can hardly wait to see the changes.    Education and Medical (integrative/biomed approach to treatment) are our two primary areas of focus in the near term and we expect to see wondrous changes.  Get ready folks, this is Coleman’s year.  Expect great things. 

Thank you for reading, see you next April. J

My Mom

As many of you know, my mom passed away last Wednesday.  We are still trying to adjust to our new reality without her, something I suspect we will never get adjusted to.  My mom was a huge part of my life, and an enormous part of my kids' life.  In particular, she was Coleman's biggest supporter and my counselor in all things related to special needs.

I want to post more about Coleman's progress but can't yet pull it together.  I will soon.  Instead today I'll share a post for my mom - it is the Eulogy I wrote and gave at her funeral.  She was an amazing woman - many of you had the great pleasure of knowing her.  We will miss her every single day.

 

For my Mom

One of the many difficult parts about death is that no matter how much time you have to prepare for its arrival, you are never really prepared.  Some would say our family was lucky in that respect - we had our chances to say goodbye, to hold her closely and tell her how much we loved and appreciated her, to let her know, despite our heartache, that is was ok to let go, ok to give up.  But we hardly feel lucky.  We feel crushed.

Everyone here knew my mother well.  She was so many wonderful things to so many wonderful people.  To her friends, she was a faithful promise, a constant and honest friend in both good times and in bad.  A shoulder to lean on, an ear to vent to, a heart to cry to.   A friend that was always at the ready.  But she was also a friend in need. 

She needed that shoulder to lean on, that ear to vent to, and many hearts to cry to (though truthfully I suspect she rarely did).  Mostly though, I think, she needed friends to escape to from her delightful but occasionally incorrigible children.   She sought conversations and discussions that surrounded in things other than “Who drank all the milk?” “Who ate the last of the Cap’n Crunch?” “Where are all the Chips Ahoy hidden?”   I remember she would try to sneak to Gerard’s café, or her friend Peachie’s house to chat for a short time.  But she would be gone no more than a ½ hour and we would be on the phone, calling. 

“When are you coming home?”   “How much longer?”   “Do I have to watch Star Trek?”

My mother’s friends tried to help fend us off, official gatekeepers of her time.  I would call, and try to disguise my voice when Peachie answered the phone.  “Your Mom is busy right now.  What do you need?” she would say.  Such a shrewd one that Peachie, thwarting all our efforts.   My mother deserved the break from us of course, deserved some time away – we just never saw it back then.  Just like we never saw any the stress or pain or heartache that she went through.  We only ever saw the positive, reassuring, ‘everything is fine’ woman.  The ‘we can handle this’ woman.  The ‘nothing is insurmountable’ woman.   She was that woman until the end. 

In reality, though, of course, there was stress and pain and heartache; everything was not always fine.  And that’s where her friends really shone.   

I first noticed the bond of my mother’s friendships with the arrival of Kiki.  It took exceptional friends to understand a special girl like Kiki, and all of my mom’s friends did – they all became important parts of her life.  We held several healing masses at our house for Kiki , several prayer services – and all of my mother’s friends were there, every time.  In addition, they came several times each week to ‘patten’ Kiki – a process that was intended to prevent atrophy from settling in Kiki’s body from non-movement.  In a small room in the basement, with Kiki layed out on a table, they took turns moving her legs, bending her arms, helping to make flexible those limbs that did not move on their own.  And in between turns, they played guitars, sang songs, told stories, and ate pizza.  A lot of pizza.   I vividly recall sitting atop those basement stairs, happily listening to the growing din below, knowing that all of these people were here to help Kiki, to help my mother.  I didn’t know what to call the feeling then, that mix of happiness and pride – the combination that nearly takes your breath away.  I know now it’s called gratitude.  Today, our family remains full of that feeling, that gratitude, for the friend that each of those people were to my mother. 

My mother’s friendships certainly weren’t contained to helping with Kiki.  My mom lived a full life, despite her meager means, and we have lots of fond memories of times spent with her and her friends.  She loved her Sunday movies and dinners, and her weekend trips to Chatham.  I recall many afternoons on Bowman street, annual trips to the campgrounds at Myles Standish, long beach days at Nantasket, and our rare but fun week-long Cape Cod rentals.  We loved my mom’s friends – they were, still are, and always will be – like extended family.  From the Fitzgeralds to the O’briens, the Flahertys to the McIntyres, the Clarks to the Shepards, and so many, many others in between.  She was a lucky woman to have so many friends that cared about her. 

Aside from my mother’s friendships, the majority of her time was spent with us, her kids.  She was our world.  And, I think, we were hers as well.  She loved the beach and we spent a considerable amount of time there with her.  Where else really can you take seven kids for the day with a jug of kool-aid and a stack of peanut butter and jelly sandwiches?  We were never alone, sitting in the same spot every day, where neighbors and friends all gathered at various times of the day.  We arrived early and stayed late.   It was a ritual we all loved.  Unless you were mistakenly left at the beach.  Like me.  “Go over to the showers and wash the sand off” my mother told me.  In retrospect, it was ridiculous of her to ask.  Clean the sand off before getting in the car??  Really?  That old station wagon had enough sand in it to start its own beach.  But still, off I ran to wash the sand off.  I dawdled, I’m sure.  And when I returned, there was no car.  And no family.  My mother told the story that she was home, unpacking the car, thinking “It seems very quiet around here…” realizing suddenly I was missing.  So she came back and got me and no one’s been forgotten since. 

As the years passed and my mom’s arthritis grew worse, her days at the beach began to wind down, the soft sand too difficult to maneuver in.  It killed her to give up the beach, and in the last years, she would drive to Nantasket, and wait for the tide to come in, and then walk down the ramp so she could get to the water easily.   But even that was difficult and soon she was unable to make it onto the beach at all.  To compensate for the beach, we started to spend more time at our pools. Between all of her children, she had several to choose from, though admittedly she found my pool the easiest to enter and exit.  You could frequently find her there, floating around the pool, noodle behind her back, basking in all her glory.  We kept the fridge stocked with hotdogs and relish.  Food for our queen. 

Soon, though, even the pools became difficult to get in and out of.  But she didn’t complain, only wanting to spend time with us wherever she could.  She was a big fan of sitting in the yard with everyone, passing hours on end chatting about anything and everything.  She would call me in the morning.  “What are you doing today?” she’d ask with anticipation.  “Not much.  Might go over Ronnie’s so Coleman can jump on the trampoline for a while.”  “Good.  Ok, my friends are going to the Cape for the day, but I’d rather hang with you guys.”  “Go!” we would urge her, but she was stubborn, as you know, and there was no changing her mind.  And so we spent many, many lazy days in yard gabbing away, and as the weather grew cold, we simply moved indoors but continued with our weekend get togethers.  They were quite frequent, and I am so grateful now for all of those times we shared. 

Things took a dramatic turn for the worse about 2 ½ years ago with the first of several perforations in her colon and, despite her best efforts, the downward spiral never really ceased.  She never complained though, and remained desperate to get home, hopeful always that she could get there.  For a short time she did make it home, and despite her inability to walk, she was able to slide from the bed to the wheelchair unassisted, and then manage her way around her house independently.  She had such determination – it was really something.  At one point, she would call one of us that lived close by – Debbie or Patti -  and have them come to her house, help her down the ramp and into the driver’s seat of her car.  They would pack the wheelchair into the trunk, and off she would drive to her destination, usually my house.  She would pull into my driveway and beep, and out I would come, take the wheelchair out of the trunk, help her into it, and through a true MacGyver contraption which included couch pillows and a set of 2x4s, get her up the singular small step into my house.   She held on to the sides of that chair as I heaved her up – I’m certain God himself was there helping, for although we made it, it was a very close call.  We waited for Billy to come home before trying to get her back out again.   In any case, my mother remained determined, and that determination carried her through the last two years.  During these difficult times, she remained clear of mind except for a few bouts of confusion associated with infections.  Those times provided us all with a bit of comic relief as she recounted events or things that had never happened.  Chuckling she would nod her head to the windows, and whisper “Do you see them?  There are little leprechauns up on the corners of the windows.”  Or when visiting her I would ask “How was your night?” and she would tell me how she had gone to Hi-Fi for pizza that night, which was not possible since she was unable to eat or walk then.   Or, in a particularly out of character moment, she flipped the bird to one of the nurses she was sure had just insulted her.  For the most part, however, she was sharp and she remembered everything.   Her head was strong, but her body was weak.  It was only very recently, I think, that she began to understand that God’s plan was quite different than hers. 

We all had very different relationships with my mother, none more important than any other, none less.  She cherished them all, and never a day passed that she wasn’t available.  She was a teacher, a confidant, a guidance counselor, a cheer leader, a sympathizer, a unifier, and a friend.  She was a parent in the fullest sense of the world, a Matriarch who lived her life in God’s example.  She did not deserve the life she was dealt.  She deserved so much better.  She had EARNED so much better.  We will always struggle to understand God’s plan.

Her passing has left us broken hearted, a colossal void that will never be filled.  But we will forge forward and try to find joy in our memories of her.  We will do our best to follow the example she so plainly set for us - 3 simple truths to live by:  live faithfully, forgive quickly, and love deeply.  We will remember that she gave us her all, an effort that likely gave us more time with her than perhaps God had originally planned.  We will find comfort that her suffering has ended, that she is reunited with Kiki and her own parents, and that one day we will meet again.  Until that day, we will plead with her for heavenly favors;  we will beg her to help us;  we will implore her to guide us.  We will be relentless in our demands.  We will give her no peace.  For her, it will be just like she never left. 

💓💓💓💔💔💔💔💓💖💖

Conversational Language

Conversational Language

Abby and Emma are at the age where they are constantly on their phones.  Not talking of course.  That is so last decade.  On their phones streaming music, watching vines, commenting on Instagram, tweeting on twitter….ugh, it never ends.  And in frustration I yell at them to put the stupid phones away.  “10 more minutes!” they yell back and I think, gratefully, that at least Coleman doesn’t always ask for 10 more minutes, at least Coleman isn’t stuck on senseless apps on an iphone.  And then I look and see him over on his computer, tapping away at different youtube videos, stop/start, stop/start,  stop/start.  Over and over again.  And I wish Coleman would just go on a phone and tweet on twitter. J

Really, though, we are seeing some good progress in terms of communication from Coleman.  While his recent testing surely didn’t reflect progress, we can see changes here – they are small, but they are certain.   Over the past several months in particular, he has been trying to get the words out, trying to initialize spontaneous speech.  His problem seems to be in word order.  It’s like he has the words in his head but they are jumbled up and he can’t quite figure out how to arrange them in the correct order.  He knows when he doesn’t have it right, but struggles to make the proper adjustments.

For example, one day I took Coleman to the doctor, and after the appointment Billy met me to bring him home, while I went to work for the afternoon.  I said to Coleman as I left “I have to work for just a short time, ok?  Just a short time and then I’ll be home.”  When I came home later he said to me “Did you have a short good…” and then corrected “Did you have a work good short…” and then, after a couple of more tries, finally “Did you have a good short work?”  I was so ecstatic – it was completely spontaneous, and he was so close and had the words and thought process right.  IT was such a big deal, I was all over him about what an amazing job it was, how brilliant he was, how proud I was of him…He was probably a little confused by my over-exuberance. 

Another example was over Easter.  Billy bought a big beautiful Lily plant home and we had it on the kitchen table.  When I came home from work Coleman said, “I brought some plant to share, do you want some?”   It was a play on one of his Max and Ruby scripts about lemonade sharing, but he was intentionally talking about the plant, wanting to know if I had noticed it and if I liked it.  I made a big deal about how gorgeous it was, how it had such a wonderful scent, and how happy I was that he was sharing it with me.  He looked smugly happy and proud, as if he himself had actually gone out and bought it. 

And then one night in the tub, as I squeezed out the cloth, he said “You use the face to…” and then “You face wash…” and then “You use the cloth and wash face.”  “YES!!!  Yes you do use the cloth to wash your face!!! GREAT JOB!!!!” I exclaimed.  Again, proud happy smile. 

So, lots of progress in speech, although it was not apparent in his testing.  That said, there is still plenty of scripted speech.  Ok mostly scripted speech.  Things like “Rule of life number 4: if you want to hide your baby brother, change his diaper first” (from Olivia), “I don’t have time to talk today. I can’t be late for school.  Today is show and tell!” (from Little Bill), “Ok but if you want to be a pirate, You have to listen and do everything I say, got it?” (said with a pirate accent from The Backyardigans “Pirate Adventure”), “There are two uninvited guests at this dinner party!” (from Max and Ruby), “Peter! How can you be thinking about food at a time like this!!” (from Peter Rabbit), "I'll tell you a story from when I was young and lived in Africa" (from 64 Zoo Lane) and so many, many more.  Coleman still recites these phrases pretty much all of the time, usually speaking word for word in time with whatever show he happens to be watching.  Sometimes, though, he just walks around repeating these phrases, as if he is actually the person in the show.  Still, we are seeing progress.  The tiny breaks of real thought, real words, real phrases, many formed perfectly and others mixed up a bit, but definitely there.  And we are very excited about this.  It’s the first steps toward conversational language. 

Last night, we were in the kitchen, and I was looking over the calendar for the week, figuring out who needed to be where and when.  It was late, and shocker (not) it was getting past what should have been Coleman’s bed time.  He turned to me and asked in a frustrated tone “Is it time for bed yet?”  Gulp.  Ok, I thought, listen to the child.  “Yes!” I said, “Let’s go to bed, it’s late” to which he promptly yelled “NO! Ten more minutes!”  J

 

Eating

EATING

All is not doom and gloom around here, despite my prior post about the testing results.  While it may not have shown up on formal testing, we all know Coleman has made some progress, and we are very proud of that around here.  One area in particular comes to mind:  eating.   Ah, the trials and tribulations of Coleman’s eating history.  It’s been a bumpy road for our little man, but we have made so much progress in the past year, I have to share it with you. 

Before the Leukemia saga, Coleman ate a lot of food.  He was a chubby little baby.  He had (and still has) many GI issues but his variety of foods was extensive.  He ate everything.  I’ll never forget – right before he was diagnosed with the Leukemia – he had his first warm chocolate chip cookie.  He was 18 months old.  He stood, holding the melting cookie up to his mouth, bits of soft chocolate oozing down his chin.  He ate it in about 5 seconds flat, and looked up in me with his big round eyes and said “More?”   

And then the Leukemia came.  And along with my little man’s happy temperament, the Leukemia stole his appetite.  It only took a couple of weeks before the effects of the chemo hit him like a freight train.  The nausea was intense - he could keep nothing down.  Worse, we had to try to hide the horrific tasting medicines in the little food he did eat.  At first, he tried to eat.  He would start out the morning hesitant but willing, and if I was lucky I would manage to get a piece of toast into him.  But as the morning wore on, the nausea increased and then I would have to try to get him to eat the yogurt that I had buried the awful medicine in.  And he would vomit within minutes of tasting the yogurt.   We needed to get the meds into him to fight the cancer.  They warned us that if we didn’t succeed, they would readmit him and give him the meds intravenously.  We had just come home, though, after more than a month in the hospital, and we wanted to stay home, so we were doing our best to get the meds into him.  “Try syrup” the doctors suggested.  So we poured the meds into the syrup and served him his favorite breakfast food, waffles.  But the taste was intense and he threw up as soon as it hit his mouth.  (I put it on my tongue to try it, and I assure you Coleman had every right to puke it up, it was revolting.)   The colossally painful side effect of chemo, Mucositis, only exacerbated the problem.  Mucositis  is essentially small, very painful ulcers.  Think of really bad cold sores.  And they were all over the inside of his mouth and down his throat.  He bled if he tried to smile.  The nausea and the sores combined to make eating nearly impossible.  Coleman was losing weight fast.  Every day it was the same thing:  we were 100% focused on getting food into him.  Sadly, we were largely unsuccessful.  I used to wake up in the middle of the night and stare at him, lean down close like I did when he was an infant, and look to see if he was breathing.  Just to be sure.  A couple of months into treatment, Coleman stopped eating altogether.  He wouldn’t take a bite of anything.  And when we went into the Jimmy Fund Clinic for our appointment later that week, they weighed him.  He had lost another 2 lbs and had now officially lost about half of his body weight.  The team at the Jimmy Fund called an audible and decided to readmit Coleman to Children’s, and within 24 hours he had a feeding tube put in.  I felt defeated but relieved- I couldn’t take another night of laying Coleman down for sleep on an empty belly. 

The feeding tube worked as it should, and Coleman received all of his meds and nutrition through that tube for the next two years.  He ate nothing orally.  His nausea continued rather seriously during that time, but we could run the feeding tube overnight while he slept which is really the only time he didn’t vomit.  And that is what kept him going through the rest of the treatment.  He slowly regained some weight, but never quite made it back to the chubby little guy he once was.

When Coleman’s cancer treatment ended, and they removed his port-o-cath, the feeding tube remained.  He was still unable to eat, and his gag reflex was severe.  We could not order take-out with Coleman in the car (which we learned the hard way, #Imshockedanyoneeverboughtouroldvan) .  He could not be in the kitchen if we were cooking (thankfully did not occur very often back then).  And he certainly could not be present while anyone at any kind of food.  In every one of these situations, Coleman would smell or see food and promptly puke.  A lot.   So the feeding tube, the doctors informed us, could not be removed until Coleman learned to eat orally again.  Learned? I thought.  

We had to find Coleman a feeding therapist, and alas, our relationship with Kara Larson began.  An amazing feeding therapist from Children’s Hospital, Kara warned us “It’s going to take him a couple of years to learn to eat again.  It will be tiny, baby steps but he’ll get there.”  Gulp.  Years of therapy to eat??  I could hardly believe it.  But Kara was amazing, and patient, and so good with Coleman.  And she was right:  it was tiny baby steps.  They started with simply having a piece of food on his plate.  He only had to tolerate it staying on his plate.  And that step took weeks to get through.  And then he had to touch the food.  Not eat it, just touch it.  And that took weeks too.  And then smell it.  And then bring it to your lips but not eat it.  We went several times each week, slowly helping Coleman to understand it was ok to eat. 

When I think back, I have such regret about how things progressed during the chemo, how long we tried to get him to eat, about how we were forced to deceive him on every food, every bite , to try to get the meds in.  I wish the protocol for Leukemia in children allowed for a feeding tube to be inserted from the get go.  But it’s an invasive procedure, and surgery of that type is very dangerous for children who are already quite sick.  And not all kids have the same reaction.  But for Coleman, those first few months of nausea and forcing him to try to eat medicine-tainted foods, destroyed his desire and ability to eat.      

Our sessions with Kara lasted several years.  With her help, Coleman slowly built a small selection of foods that he would eat.  And on October 15, 2012 - 6 years, 5 months, and 7 days after the Leukemia nightmare began - Coleman’s feeding tube was removed, closing at long last the most difficult chapter of our lives.

Without Kara, we had to keep up the techniques she had taught us to not lose ground on all that had been achieved.   While he was eating orally, he remained physically quite small, not even on the charts in terms of age-appropriate heights and weights.  And he was very finicky with foods – the autism impact on his eating much clearer than it had been in the past.  His go-to food was waffles – everyone that knows Coleman I’m 100% sure has seen him walking around with his dry, rather unappetizing waffle.  Because God knows that he will never again let us put syrup on it.  Past the waffles, our problem was (and still is) that on one hand, you needed to mix it up, show different foods, or else he became very fixated on the one food and would only eat that one thing.  On the other hand, you needed to re-present the same foods often, or else all the work to get him to eat that one food was lost, and he would refuse it, “forgetting” that he liked it.  For example, we face this issue every year with Watermelon.  We worked on Watermelon for quite a long time, going through each of the baby steps, seeing, smelling, touching, etc. until he finally tried it.   And then he would be willing to have it – albeit in very tiny amounts – but still have it.  So we gave it to him several times each week, until, eventually, it went out of season.  So now, this time of year, as it comes back in season, we say to Coleman “Hey! How about some watermelon?!!” and he is all like, seriously, no chance lady.  And so we have to start again. 

Over the last year, however, Coleman has made amazing progress.  We introduced new foods, and remarkably he seemed to take to them much faster.  Or maybe he was just really hungry.  What’s more, we worked on Coleman’s ability to feed himself.  Up until this point, we had to feed him.  His dexterity with utensils was imperfect initially, clumsily holding the spoon with such a light grasp that he dropped it often.  But he caught on.  And now, he manages that spoon just fine and eats all of his meals entirely on his own.  Yay!!! Such a huge success!!  His approved menu of acceptable foods, although still limited, is quite impressive compared to where we once were.  Chicken broccoli and ziti tops his list, followed by Chicken parm.   I can’t imagine where he gets that from.  J   

There are lots of things he still won’t eat (he has never had another cookie since the one he had that first and only time 9 years ago) but we are working on it.  We will always be working on it I suspect.  So we ebb and flow in terms of introducing new foods.  And on the back burner coming up is the desire to go gluten free/casein free.  Not yet, but soon.  Right now, we are focused on ice cream.  For those of you who know us well, this should come as no surprise.  One of Coleman’s favorite outings is to “go out for an ice cream” although he has never actually eaten an ice cream.   So we are on it now.  He will currently tolerate putting it up to and on his lips, but that’s it so far.  I feel confident we’ll make even more progress this summer.  If it ever gets here. 

The Evaluation

The Evaluation

As the new Neuropshych evaluation approached, Billy and I tried to prepare ourselves for the test results.  We were trying to be optimistic, but also trying to be realistic.  We reminded ourselves that regardless of what the evaluation told us, it wouldn’t define Coleman.   We promised to remember that he is more than just results on paper, more than just a standard score.   And that while many of the loveable traits we know about Coleman may not show themselves in the test results, it certainly doesn’t mean they don’t exist.  But we hoped, really hoped and prayed, that those traits did come through in the tests. 

For this evaluation, I again accompanied him in the room for the testing.  The doctor was very nice, very gentle, and she was good at giving him time to focus which sometimes can take time.  It was hard, I’ll tell you, to keep my big mouth shut.  I had to almost think about other things, the urge to reach over and help was so strong.  At one point, the Doctor showed Coleman a picture of a wrapped present, and asked him what it was.  He was staring and staring at it, and I was thinking  “Present.  Say present” but instead I quickly said (out loud) “What do we bring when we go to a birthday party Coley?!” and the doctor looked at me grimly.  “Leading the witness” I think she wanted to say, and I apologized and shut my mouth.   There were a few other instances like that, when I just couldn’t will myself to keep quiet.  “He knows this one, I know he does” I would say, trying to persuade her to let me help.  I am a nuisance, and they will unlikely let me in again for future testing. 

Anecdotally, I thought Coleman did well on some parts, and not so well on others.  He performed best in clear, concrete language skills and manipulative tasks, and struggled in anything abstarct or fluid.  For example, when he was asked to identify pictures, he started out strong:  house, ball, swing…  But then the pictures became a little harder, and he lost some of his steam.  Like on the word present.  In his defense, he really doesn’t like presents.  J   He was shown some action pictures, and asked what the person was doing.  Action words using “ing” is something Coleman is not consistent with so I was on the edge of my seat as he went through them.  “Running.”  “Swimming.”  “Sleeping.”  He got through several of them, and when we was shown “Skiing” and he got it, I jumped up and yelled “YES! GOOD JOB!” before I got the evil eye again from the doctor and sat back down.   

As he moved from basic expressive language to a more fluid expressive language, he started to stumble.  He was shown a picture of a cup and asked what is was.   “Cup” he said.  But when asked “What do we use a cup for?” he could only respond “drink.”  He understood what it was for but did not have the language to say “We put drinks in it” or “We drink from it”.  Similarly, he was shown a spoon, was able to identify it, and knew what it was for, but lacked the ability to put the words together to describe the action “We use it to eat.”   His understanding – vs. expression – of abstract language was also on shaky ground.  The doctor handed him a toy car.  “Can you give me the car, Coleman?”  He gave her the car.  She put the car and a small truck on the table.  “Before you give me the car, can you give me the truck?”  But he gave her the car. 

Coleman performed well on manipulative tasks, like puzzles, which he loves, and matching objects by one feature (i.e. color or shape).  But again, if the tasks became more complex (sort by two feature, i.e. give me the round, blue objects) he became confused (i.e. he still gave all the blue objects, not just the round ones).  And again the more abstract the test, the less well he seemed to do.  For example, when shown a pattern of “red/blue/red/blue/ __”, and asked what came next, he would say “red.”  But in a pattern like “Heart, Heart, circle, square/ Heart, Heart, circle, square/ Heart, Heart, circle, __” he struggled to come up with square. 

In other testing, he was asked to replicate small structures with blocks.  The doctor would stand two pieces side by side, and then place one across the top of them, like a bridge.  She would give him three blocks and say “Coleman, can you make this?” and point to her blocks.  But Coleman only lined the blocks up side by side.  She took them down and pointing to hers, asked again “Can you make this?” and Coleman took the blocks and lined them up side by side again.   She asked him to imitate her, and she put a little object on the end of spoon lying flat on the table, then pressed one end of the spoon so that the little object bounced upward.   She put the spoon back, the object back on one end, and said “Can you do it, Coleman? Can you make it bounce?”  But Coleman just picked up the spoon and the object and handed them to her.  

The evaluations took place over three different days in an attempt to give Coleman as much time as needed to ensure we captured his capabilities accurately.  I talked to Billy when I came home each day, saying that I thought he did ok during the testing, but noted that the testing was meant for much younger children, and even with that, it wasn’t like he aced them.  I would say “Yes, I really think he did well.”  And ten minutes later I would say “I don’t know.  I think he did poorly.”  And then again, “No, actually, he probably did fine.”  Billy would take a deep breath and say “Don’t worry.  He did fine.” 

But by the time we went back in for the feedback session this time, we were less anxious.  We were resolved – we cared most about our plan, most about where to go from here.  We knew without them telling us anything about the testing, that here was not where we would remain. 

Our advocate came to the feedback session, and she, along with Billy and I and the two doctors who had done the testing, all sat around a big table.  One of the doctors inched a box of tissues closer to us as she began.  She initially spoke about how sweet Coleman was, how he had a lovely connection with me (J) and how he had some nice developing skills.  But after the soft introduction, she got right down to business.

·         Coleman exhibited weaknesses in his foundational social skills such as eye contact and joint attention.

·         Most of Coleman’s speech was comprised of scripted phrases or stereotyped language. His speech was also characterized by unusual prosody and atypical intonation patterns

·         Coleman became fixated on certain topics

·         Coleman exhibited a very short attention span and was typically able to complete only one or two testing activities before requiring a break.

·         Coleman’s stereotyped behaviors have become so entrenched and pervasive that they are significantly affecting his functioning.  

It was quite depressing.  She presented his test scores.  For tests with a percentile score, scores in the 25% to 75% range are considered within the range of a national sample.  Coleman’s percentile was less than 1% in most areas.  And for tests with a standard score measure, scores in the 90-109 range are within the average range.  Coleman’s standard scores with scattered in the 20-50 range.  In sum, his age equivalent was 32 months, about the same as it was nearly five years ago.  On several measures he had actually regressed from where he had been at that time.  We thought we had prepared ourselves for bad news – we had certainly talked about the “what if” scenarios…but in our hearts we had hoped for good news, and so we sat disappointed and quiet for several minutes.  But unlike 5 years prior, our silence was short lived, and we quickly turned the focus on to the future and held a lively, collaborative discussion about what do to next.  The recommendation was unanimous:  Coleman needed to move to a different school.  He needed a placement urgently, in an intensive program designed specifically for students with ASD and ID. 

We left the meeting with our first directive:  to notify Coleman’s school of our intentions, to let them know that placement was what we wanted to discuss at the upcoming IEP meeting, and to inform that we had assembled an outside team to help us assess what would be best for Coleman.  Full disclosure.   I didn’t leave that meeting sad or upset – I felt empowered.  I felt like it may be late, but it’s not too late.  I was ready to fight.  Finally. 

 

The Video

The Video

Around the same time as the IEP review meeting, Abby was flipping through some old flash drives, looking for more space to store her concert videos, when she came upon an old video of Coleman.   She called me over to see it.  Emma and I walked over and watched.  I watched it once, and asked her to replay it.  I stared quietly.  Emma was looking from the video to me and back again, trying to glean my take on the video.  “Let’s stop watching this.  It’s making you sad” she said.  “No, it’s ok.  I’m not sad.  I’m surprised a little, but not sad.”  In truth, I was sad.  The video showed Coleman smiling and singing along to a Ni Hao Kai Lan video.  And despite a time lapse of roughly 6 years, Coleman looked and acted very much like he did today.  He was a little smaller then (not much) but his expressions, words, mannerisms, voice, even his guys  – were all exactly the same.   And that translated to me that our special guy was not making progress.  And that made me sad.   And I started to think about that little video all the time. 

I’m not sure when we dropped the ball in ensuring we had the best plan in place for Coleman in terms of Autism treatment.  Maybe it was years ago.  Maybe it was only recently.  I tend to think, however, that we never really had the ball to begin with.  And that was where we went wrong.    

I remember Coleman’s original testing for Autism at Children’s Hospital vividly.  I stayed beside him during the evaluation, watching him anxiously, willing him to choose the right answer, to select the correct object.  Biting at my nail, I had to restrain from reaching over to help him, to not show him the right answer and say “Like this Coleman.”   Sometimes I thought he nailed it (overzealous parenting?) and at other times I worried why he hadn’t been able to complete certain tasks.  And after two agonizing weeks of waiting, we were brought in for the feedback session where the doctor slowly went through the test results, and told us gently that Coleman was autistic.  Stunned and saddened, we left the office silently, in our hands pages of recommended resources to find help.  Billy and I remained silent on the car ride, both of use unsure what do say or do next.  When we arrived home, Coleman was there to greet us as always, not with words but with his big smile, and we both knelt down and hugged him, and I think we both had the same thought:  maybe they are wrong. 

The truth is, we simply were not ready for the news.  I don’t just mean emotionally of course – I suspect no one is ever emotionally ready for that news.  I mean we weren’t ready for another fight.   We had just finished three long, hard, emotional and exhausting years fighting Leukemia.  We were tired.  Coleman was tired.  We wanted a break.  We wanted Coleman to have a break.  So we took the doctor’s recommendations to the school, and tossed aside the list of outside resources, and instead put our faith and trust in the program that the school put together.  It seemed a smart enough choice - the school had been doing this stuff for years – they knew what to do, how to do it, when to do it.  We knew nothing.  And I think we were relieved, to be honest, to relinquish that control, to be free from the worry.  After all that Coleman had been through, we didn’t want to push him.  We didn’t want the full day preschool.  We didn’t want additional hours with therapists at the house.  Dear God, we thought, just let him be.  Give him time to enjoy life without tubes, without medicines, without being sick.  Give us time to enjoy him.   And, we whispered in the back of our minds, you are wrong about him anyway.  He is just delayed.  He just needs time to catch back up. 

Weeks turned into months, months turned into years.  And Coleman remained largely the same little person through it all.  And we didn’t push for more services.  And they were certainly never offered.  And then I saw that video of Coleman singing Ni Hao Kai Lan.  And I knew the time had come for change. 

It was like coming out of a long slumber (except disappointingly I was still me and not a beautiful princess) and suddenly feeling like you had missed so much.  We felt like we had to make so many changes, look at things differently, try new approaches…but we didn’t know where to begin.  So I called a friend I hadn’t seen in a couple of years.  She too had a son on the spectrum.  I was filling her in on Coleman, on his behaviors, on the months of downward spiral, and the lifesaving BCBA that had helped change things, and on how we were looking to make some changes.  She told me about some changes she had made for her son, and how amazing things were working out.   “You need an advocate” she stated.   “Someone who can provide some guidance about the best approach for Coleman’s future” she insisted.    

A week later I was talking to her advocate on the phone.  We spoke for over an hour and she asked me more in that time than I could even answer.  She was brilliant, and after only a few short discussions, I knew she would be enormously helpful.  

The first step, she thought, was to have a new neuropsych evaluation completed.  We hadn’t done one since Coleman was initially diagnosed almost 5 years prior.  “Let’s figure out exactly what he can do, and what he can’t.”   A neuropsych is like ground zero in terms of a plan.  It lays out rather explicitly the child’s strengths and weaknesses, and specifies exactly what kind of programming/teaching should follow to enable the child to reach his potential.    I was excited and nervous for the testing:  in many ways I felt like Coleman had really made some solid progress.   But then I would think about the Ni Hao Kai Lan video.    So I made the appointment for the evaluation, and waited anxiously for the testing day.

(The end.  J  No mistake.  I didn’t accidentally copy in only part of the post.  I’m breaking this into two posts because, as you can see, I tend to blabber on and on, and this could continue on until page 200 or more so I will stop and take a breath and finish tomorrow.  )

World Autism Awareness Day

World Autism Awareness Day. 

Today’s post is not a personal story so forgive the reprieve…just wanted to speak for a moment about World Autism Day which was Thursday.  I’ll be back to personal stories on my next post!

Thursday was World Autism Awareness Day.  The day was established by the UN in December of 2007, and was first celebrated on April 2, 2008.  I’ve heard recently criticism about this day – from “how does one day change anything?” to how does “lighting it up blue” help my child to “I’ve worked hard to mainstream my child – I don’t want to highlight how my child is different.”  This day means different things to different people.  But to me, this day is about more than just a commemorative day, about more than a blue light bulb, and certainly nothing about highlighting differences. 

On a very macro level, World Autism Awareness Day increases visibility about the growing number of individuals diagnosed with autism.  Back when Coleman was born, the stats were that 1 out of every 125 children had autism.  When the UN passed the resolution for World Autism Awareness Day in 2007, the stats had climbed to 1 in every 88.   Today they are at 1 in 68.  This is a crisis, and we need awareness now more than ever.  Autism Awareness Day draws in resources, brings the conversation to the forefront of media, and amplifies the call to action.  This year, the United Nations General Assembly chose employment as the theme of World Autism Awareness Day, appealing to businesses to make concrete commitments to employ people on the spectrum.  That appeal will take shape in corporations for months and years to come.  On a micro level, World Autism Awareness Day brings to the surface the very real, very challenging stories of people living with Autism.  It provides a forum for personal accounts of defeat and triumph (like ours) and helps the world to understand just a little bit more what life is like for some individuals and families living with Autism. 

I am personally grateful for this day, every year, for a variety of reasons. 

·         I get to write this blog, without people saying “Who really gives a crap?”

·         My girls get to be heroes at school for a day – all their friends wear blue, everyone cheers Coleman on, and they get to gloat in the joy of having an Autistic brother.  Yes, I said gloat.

·         People at my office wear blue, even though I didn’t ask them to, and they stop by and say “Got my blue on for Coleman!”  And it makes me happy that they remembered.

·         Friends I don’t see very often text me and say “I’m thinking about your family and Coleman today” and I’m so glad they are thinking about us, but grateful they are not actually with us and not witness to this morning’s meltdown over the girls putting on their jackets to leave for school, heaven forbid, while Coleman was in the bathroom. 

·         Coleman gets to be the Big Man On Campus for a day, even though he doesn’t understand it.  Kids throughout the school are walking down the hallways, yelling out to him “This blue is for you Coleman!!”  And I feel happy for Coleman.    

·         There arrives a plethora of articles in newspapers and online about new information and progressive research into causes and treatments of Autism and that gives me hope for Coleman and for our society as a whole. 

·         I go to Dunkin’ or the supermarket or to the bookstore, donning my Blue Autism Jacket, and people stop and say “I’m wearing blue for Autism today too.  My nephew/brother/son/sister/neighbor has autism and I’m wearing it for her.”   I hear touching stories about other families going through the same madness that we are.  And it reminds me that we are not alone.

But mostly, I am grateful for Autism Awareness Day/Month because of the attention and focus it brings to this growing population.  And that attention leads to better research, new medical breakthroughs, novel approaches to recurring problems, and hopefully, a slow but steady improvement in the lives of people living with autism. 

Coleman will personally benefit from all of those things, either today or in the near future.  For example, according to the US Bureau of Labor Statistics, working-age people with disabilities are employed at about 1/3 the rate of people without a disability.  (The Arc – the national leading organization for people with intellectual and developmental disabilities - claims this unemployment rate for this group is closer to just 15%).  There are many reasons for the low rate, but changes are underway, some mandated by law and some taken on by choice, which are improving employment opportunities for people with developmental disabilities.  For example, resources are being allocated to teach young adults via inclusive community models of employment versus sheltered, segregated workshops.  And the UN’s call to action this year for companies to commit to finding ways to employ those on the spectrum will prompt even greater changes.  Already companies like Lee and Marie’s in South Beach, Miami, Puzzles Bakery and Café in Schenectady, NY, Zendesk in San Francisco, the Hyatt Group, and many other companies across corporate America have embraced this growing acceptance.   I am grateful that Coleman will one day reap the benefits of all of this progress.    

In another example, a recent landmark study done at the UCLA Center for Autism Research and Treatment argued for a shift away from traditional socialization training when trying to teach kids on the spectrum about social interaction.  The study showed that instead of adults working one-on-one with autistic children about how to enter a playground game or conversation, they chose a few typically developing classmates and taught them strategies for engaging children with social difficulties.  (The classmates did not know the identity of the child with the autism).  Remarkably,  teachers reported that those students whose classmates received training – including those who themselves received no social skills counseling – spent less time alone on the playground and had more classmates naming them as friends, compared to those who received only one-on-one training or no intervention.  In addition, their teachers reported that the students with autism showed significantly improved classroom social skills following training of their peers. By comparison, the teachers noted no changes in the social skills of children with autism who received one-on-one coaching without any training of their classmates.   This is real, impactful information that can be woven into education plans immediately.    

Finally, in classrooms of typically developing children across the country, conversations are starting to happen.  Autism Awareness Day prompts discussions and questions that will ultimately lead to better understanding of peers with developmental disabilities.  The emphasis is not to highlight differences, but instead highlight challenges and how developmental delays impact learning, socialization, and everyday living skills for people on the spectrum.  Those challenges are different for each child, and the discussion in classrooms, I hope, includes that message.  In the past, these conversations were hushed, and you didn’t talk about the quiet kid in the corner that seemed ‘different’, or the one that was pulled out of the class frequently for who knew what.   But the conversation that is happening now promotes a healthy understanding of disabilities.  It is not a conversation to isolate or categorize individuals - it’s a  conversation that instills empathy, to help kids understand their differences, not to fear or mock them.  Autism Awareness Day provides the opportunity for that discussion and that is as important as any research or study.   

World Autism Awareness Day is only one day.  But it’s a place to start.  “The first step toward change is awareness. The second step is acceptance.”  (Nathaniel Branden).