I'm Back.

Day 31:  So This Is The Deal

Yes, I’m back.  Can you believe it?  Neither can I.  Neither can Billy, who took the keys and left to go to his brother’s house when I told him.  Ok, he was actually going over anyway to watch the game, but it sounds so much more dramatic this way.  I swear, it was not a hoax that I was done.  I thought I was.  Or maybe I am after tonight.  God help me, I have no idea.    

So, the problem is this:  After dinner tonight we went out for a walk.  It was finally warm, the rain had stopped and the sun was sneaking its way through the clouds.  We walked to the end of our street and just as we turned around, it started to rain.  At first just lightly, and then harder.  Coleman stopped in his tracks and looked up.  “Where is the rain?” he asked.  Here we go, we thought.  But instead of the craziness that we dealt with this morning before school, he just looked up and then at his shirt, and then said “It’s raining.”  We made a game of running back to the house, and he was laughing.  The whole way back, wet and all.  And when we got home, right over the house was a fabulous rainbow.  Seriously, you can’t make this stuff up.  And I thought, perhaps pathetically, that my friends in Blogland would not believe this.  “You are done” I told myself.  I took the kids to get an ice cream to forget about you all.  And I was so distracted that I drove to the supermarket instead. 

So this is the deal:  I will update this blog as something fun or wonderful happens.  Or when something happens that I feel certain you guys out in there in great World Wide Web would like to know about.  Ok?  Do we have a deal? 

Ok  then.  Goodbye.  For now. 

The End

Day 30:  The End

When this whole adventure started, I honestly had no idea what I was getting myself into.  For the past few years, each April, I have been saying that I wanted to write an article for the newspaper on Autism for World Autism Awareness Day which is April 2.  Except that I always seem to remember this right around oh, say April 1 each year.  Hardly the lead time required for a newspaper.  So it never happened.  This year, same thing.  But on that eve of April 1, I started thinking that I could still meet the April deadline if I used Facebook and before I even knew what I was doing, I grabbed my computer, wrote the first post, and I posted it to Facebook, with the promise that I would write something every day for the month.   I sat there staring at the screen, struck by my own words.  “Every Day”.  I’m lucky I brush my teeth every day, let alone write a paragraph about our crazy life.  I turned to the girls for encouragement.  “Guess what?” I said, and then I told them what I had done.  They looked at each other, and then stared at me blankly, as if I was joking.  “Every day?  Can you even do that?” one of them asked.  I tried to nod confidently, then turned and walked away thinking, “Oh God, can I even do that?!” 

Turns out, yes, I could do that.  There have been over 10,000 views of this blog, and roughly 300 - 400 of you read it every day.  Seriously.  I don’t even know 300 people.  So to all the strangers out there, thank you for reading!  Strangers or not, I feel very much like this little blog has become a family of sorts.  The feedback, either in the form of FB posts, messages or emails, has been nothing short of amazing.  I have met new people, have been exposed to new ideas, and have received so much positive support – I never expected any of that.  If I had any thought – and again it was quite fleeting – it was that if I can help people who know Coleman but don’t really know him – friends in town, people that see him at the girl’s various activities, parents of Abby and Emma’s friends – if I can just help those people to understand him a little bit more, then it will be worth it.  And I think I achieved that.  And now maybe perhaps that wasn’t such a good idea J  But as the days wore into weeks, it turned into something more.  It became something like a public diary, as I revealed both the good and not-so-good.  I began to feel a commitment to this audience.  I began to look forward to the posts.  I think Billy even started looking forward to them, despite his cracks at me on the time I was spending on them.  He told me yesterday “I’m too busy to be the husband of someone who’s too busy to be a blogger.” 

Selfishly, the blog has been quite therapeutic.  I tried to be honest and open, inviting you into our lives to share in our sadness over the unfairness, laugh with us over the absurdities, roar with us at the ignorance, and rejoice with us in the happiness.   For you, I recounted various events and by doing so I was reminded about the things we find important in life, and the things we need to focus on.  You helped me remember that I need to be constantly vigilant in obtaining the best opportunities for Coleman.  Thank you for that.  You have also helped spread word about this blog, faithfully reading, sharing, and commenting.  Thank you for that too. 

I’m amazed at this audience – what started as a small group of Facebook fans has transformed into a substantial following made up of brothers and sisters, parents and children, former teachers and classmates, and plenty of people I don’t know but I sure wish I did.  I even heard that someone was making their high school son and his friends read it every night.  How perfect is that?  I believe we can cultivate a greater understanding and acceptance among kids, young and old. We can and should help them to be comfortable around all people with special needs.  When they ask, don’t shush them.  Talk to them.  Those kids will someday soon be the adults in this world.  I’m thrilled to death that they are reading this.    

I have heard all the requests to keep this blog going…and I am humbled and immensely flattered.   Honestly, I wish I could.  As I’ve said, I get a lot from writing it.  But right now, I need to step back into my life, talk to my husband and kids again.  Or else surely Billy will leave me, or at least start dating again, and I don’t even know where my girls are.  Are they at your house?  I also need to refocus on putting together a plan for Coleman.  We have started down the path of looking at new placements for him, a task that I’m sure will be extraordinarily difficult.  We have enlisted the help of a few new BCBAs to come in work with us on a behavior plan.  And, for added excitement,  we bought Coleman new sneakers this week and we are on the countdown til we put them on (4 more days) and we are planning on cutting his hair on Sunday.  Should be an eventful weekend.  I can’t promise I will post – look where that ended me last time – but if I find the opportunity, I sure will let you all know.  I’m not entirely positive I can stay away.

Finally, there is a saying in the Autism community that if you have met one child with Autism, you have met one child with Autism.  These children are all so different.  I never intended to suggest that how Coleman acts is exactly like all kids on the Spectrum.  Coleman is his own unique little self.  But many of these kids share habits, tendencies, mannerisms, and difficulties.  I’ve heard from many of you – telling me how you have a brother, sister, cousin, neighbor with Autism, and you’ve talked about their similarities, and told me how helpful this blog has been.  I can’t express how wonderful that makes me feel.  Honestly.  And then there have been comments from other moms, saying how nice it has been to realize someone else is going through similar experiences.  In the Instagram talk of my kids I’ll just say “IKR??!!!”  Personally, I’m relieved as Hell that there are other kids making their families run down hallways waving their arms.  J  C. S. Lewis once said “Friendship is born at that moment when one person says to another: ‘What? You too? I thought I was the only one.”  So on that note, I’ll say goodbye friends.  I have loved this journey, and thank you for listening. 

XOXO

The Best He Can Be

Day 29: The Best He Can Be

With just one day left, I’m suddenly worried:  have I said too much or not enough?  Have I provided enough good stories to outweigh the bad?  Are you walking away inspired or disappointed? I had none of these thoughts or intentions in my head when I began this whole thing…but now, well, they are practically the only thoughts in my head. 

I used to say I wanted one thing for my kids:  for them to be happy.  I recall being interviewed by a writer once on a piece about “Having It All”, focusing on working moms.  The hilarity of the concept to me at the time, as if I would have chosen working over staying at home to be with my kids, was nearly enough to keep me from doing the interview.   But it was for a friend so I acquiesced.  There were a slew of questions, initially aimed at my own background, and then moving toward my children and the dual ‘reward’ of being a mom and having a career.  The writer’s point of view was clear:  by ‘choosing’ to work, I had unwaveringly built a fabulous career, while at the same time provided my daughters with a commendable role model focused on the importance of women in the workplace.  It was difficult to not openly scoff. Instead, I told her honestly that I worked because I had to work, because I wanted a future for my children that included opportunities I never had, and it had zero to do with being a force for the Working Mom Movement of the world.  In fact, if I could, I would have chosen Stay At Home all day long, something I never expected until I actually had children.  Being pregnant, I anticipated our first baby’s arrival much like getting a new pet.  I thought:  I will have her and then go back to work, of course, and you know, I’ll get a babysitter or something to handle the in-between.  Good God, I had no idea of the immensity of love that would instantly appear at the birth of this child.  And so, per the plan, I went back to work after my short maternity leave, and cried for 5 weeks straight, every day.   As I told the writer my stories, I could see her growing disappointment.  She moved onto asking me about my children then.  “What do you wish for them then?” she asked, implying that the right answer had been a successful career.    “Happiness, however that may come” I answered.  She may as well have gasped, or vomited, or both.  Our conversation ended shortly after that.  I didn’t mean it to be trite.  I honestly felt that way, and still do today.  (Side note:  I read a few years ago, unrelated to the interview I gave, an article entitled “The Top 10 Things You Should Never Say To Your Children” and number 1 on the list was “Never say you just want your kids to be happy” so this just underscores that I have no business to be shelling out my opinion, but which I will do anyway.)  By saying I wanted my kids to find happiness, I wasn’t selling out on the idea of a career – if that is what they want, then yay, let’s go get suits and head to business school.  I also wasn’t wishing mediocrity on my children.  I was, and still am, stressing the need to follow what makes you happy and then you will eventually find success.  And to me, being happy trumps everything else, all day long.   My point in this clearly too-long story, is that my opinion for Coleman’s future is very similar. 

There are a lot of folks out there and their single goal is to ‘cure’ their child from Autism.  It’s a lofty goal, and while I too would be ecstatic for a ‘cure’, I am a realist.   Let’s be clear:  I am not criticizing those that are steadfastly working every day with their children for that cure, toward that goal of testing off the spectrum.  Those folks are very driven, pretty amazing people. There are times that I am like them, full of the fervor and, fists pounding, yes! We will make this happen!!  But over the years I have learned that to live with that colossal pressure for normalcy is good for neither Coleman nor our family.   It’s so much for him to live up to, an expectation that may be unachievable today or tomorrow or ever.   I want to celebrate his victories, however small they may seem.  I accept and love him for who he is today.  Carpe Diem. 

I can almost hear the gasps, much like the writer when I told her I just wanted my kids to be happy.  Before you jump down my throat at what may seem like apathy, I am not saying that I do not hope for a better future for Coleman.  Nor am I giving up on him, letting him wallow away in this world just like he is so he can be happy.  I am not.  I want him to be a contributing member of society, I want him to have independence, and yes, I want him to be happy.  Moving ‘off the Spectrum’ or moving ‘out of a diagnosis’? Hell, yes, I want that too!  That would make us very, very happy.  But if Coleman becomes absolutely the best little man he can be, Autistic or not, well then that would make us just as happy.  So we are moving ahead in what us Career women call the parallel path:  we work on everyday tasks, core strengthening, letter recognition, motor planning, play skills, social skills….there is a lot to do.  We do this day in, day out, building him up, helping him become the best he can be.  And some days that includes just letting him be, and loving him.  At the same time (this is the parallel part for all you non-career women, if only you had chosen to work instead of stay at home you would be so much more enlightened) we explore new approaches, new medicines, new therapies, and think maybe, just maybe, this will be The One.  But my eggs aren’t in that basket.  Well, okay maybe one or two are.  The other ten are neatly wrapped in the “Coleman will be the best Coleman that he can be” basket.   And that’s a pretty good basket.  And I should know, I am a successful Career Woman after all.   

Support

Day 28:  Support

When you're weary, feeling small,
When tears are in your eyes, I will dry them all;
I'm on your side. When times get rough
And friends just can't be found,
Like a bridge over troubled water
I will lay me down.
Like a bridge over troubled water
I will lay me down.

When you're down and out,
When you're on the street,
When evening falls so hard
I will comfort you.
I'll take your part.
When darkness comes
And pain is all around,
Like a bridge over troubled water
I will lay me down.
Like a bridge over troubled water
I will lay me down.

If I know nothing else, I know that I am a Simon and Garfunkel fan and that probably makes me lame on some level, and I know that we would never be where we are today without the love and support of friends and family.  All of life’s trials and tribulations are easier when shared.  I think about those families, with new diagnoses of Leukemia or Autism or Diabetes or any other life-changing condition, and I pray that they have family and friends nearby to help them get through it.  Because it’s a long, emotional, stressful road.  And it’s critical to have someone to lean on, to count on, to cry to, and to rejoice with. 

When Coleman was first diagnosed with Leukemia, we were stunned.  That first day at Children’s, we finally were moved from the E. R. to a room around 10 p.m.  Billy left to go back to our house to get some clothes for Coleman and I, and I sat in the room, staring at my sleeping little boy trying to comprehend the enormity of what we had been told.  I felt outside of myself – like I was watching from a distance this whole story unfold.  I wasn’t crying – I don’t think – because I was trying to just sort out the whole concept in my head, trying to calm myself over something I had absolutely no knowledge about.  There was a lot on my mind – more questions than answers, more confusion than clarity… but more hope than doubt.   A short time later Billy’s brothers and his sister Alison’s husband Charlie walked into the room.  They didn’t know what to say, and either did I, but they came and hugged and stood by us until Billy came back.  I’ll never forget that – it was very late, well beyond standard visiting hours, but they came anyway.  And that gesture said everything.  “We can’t change this but we are here for you.”  I love them for that. 

As the weeks and then months wore on, our families were our rock, our solid footing when we could barely stand.  I remember my sisters and my sister-in-law swooping in, taking complete control of our girls.  Cousin sleep-overs, days at the park, keeping the normalcy in their lives amid the abrupt absence of Billy and I.  And our nannie Sue was as big a help as was humanly possible.  It was such a relief – to have the burden of worrying about Abby and Emma lifted for us.  Because they were scared too.  “Can we catch it?” Emma asked when I made my first trip back home a week later.  “Will he die from it?” “Will he get better?”  They were so young – not quite 3 and 5 years old – and so sad and confused by it all.  I remember telling them how rare Leukemia was …and when they came to visit Coleman at Children’s later that month, Abby whispered to me “I thought you said this was rare?  Does every little child here have cancer?”  It was true, the floor was full, most two to a room.  “It’s because this is the best place to be treated in the whole world so they all come here” I told her, not entirely the truth, but not entirely untrue either.   

Our friends were amazing too.  From food baskets (Tracey whom you already know to be amazing literally bought a large cooler to leave out behind our house because she was constantly bringing us meals), to parking passes, to just coming into Children’s to sit with us, to being the shoulder to cry on to everything in between.  You don’t always realize how amazing your friends are until you really need them.   And we really needed them. 

When Coleman was later diagnosed with Autism, in many ways it felt like the same kind of tragedy all over.  We didn’t fear for his life, yet we feared for his life.  And again, we were trying to sort out the whole concept in our heads, trying to calm ourselves over something we had absolutely no knowledge about.  For the second time in Coleman’s short life we had more questions than answers, more confusion than clarity… and more hope than doubt.   And the girls, just a little bit older now, had the same questions when we told them:  “Can we catch it?” “Will he die from it?” “Will he get better?”  It was crushing for us all.  But unlike cancer, the news about Coleman’s autism diagnosis didn’t spread like wildfire.  Many in our family already suspected it, and when we confirmed it, they sighed sadly.  “I’m so sorry” they said.  In my kitchen, I told my mother everything they had told us.  I wiped the counter trying to pretend it was all ok, until wiping the same spot over and over, I was crying and she was crying and we had ourselves a nice cry fest.  My mother uniquely understands how I feel because of her experiences with my sister, and never a day goes by that I am not grateful for her support.  Billy had a hard time with the diagnosis, feeling very much like Coleman was cheated out of his life.  So unfair, he kept saying.  He doesn’t deserve this.  Of course he was right – Coleman didn’t deserve it – but we had to move on.  And Billy’s family was wonderful too, and their love and support pulled Billy along.  Many of friends didn’t know for quite a while.  It’s not that we hid it, but you don’t just call everyone on the phone and say “Hey guess what?!”  The news came out in pieces, as we saw our friends, as they came to the house, in dribs and drabs until pretty much everyone knew. 

The love and support of our family and friends continued.  With Autism, however,  you don’t exactly send food baskets.  The support turns almost entirely to emotional support, which is quite a bit harder, in part because it’s not a topic everyone is comfortable talking about.  It’s not that people don’t care, but more that people aren’t always sure what to say, or feel that they don’t know enough about Autism and don’t want to say something dumb.  “Is it okay to ask this?” they wonder.  When the girls were in elementary school, I used to occasionally go into the school and talk to the class about Autism.  Emma really drove this, she has such a fondness for Coleman.  She would talk about him endlessly at school to both classmates and the teachers- she wanted everyone to know and love him like she did – until finally she would beg me to go in and ‘talk about Coleman”.  I would go in and talk to them generally about Autism, tell them how Coleman was a little kid like they were, that his mind just worked a little differently, but that he laughed and cried just like they did.  And then I would let them ask questions because, and this is where kids are different from adults, kids aren’t afraid to ask questions.  They’re not afraid of insulting you, or saying something they shouldn’t have.  They ask because they are curious.  Adults don’t ask.    I remember talking to a friend with a non-verbal child.  I was just getting to know her, and I had seen her in church with her daughter.  When we were sitting together one day and I asked her about her daughter.  “Does she speak?  Do you think she understands you?”  I didn’t fire them off at her like that, but through conversation I asked.  She teared up at one point, and I thought, “I’M SUCH A MORON! I have totally upset her” and I apologized for overstepping.  “No!” she said.  “It’s just that most people don’t ask about her.  It’s like the white elephant in the room.”  To this day, I really love and respect this woman – she is strong and brave and I ask questions because I want to understand more about her daughter so I can be a better friend to her.  From my point of view, I feel better when someone asks.  You are asking because you care, so you can be a better friend, so that you can be better informed, or so that you can tell your husband/wife/brother/sister/cousin/child about this particular question and inform/help them.

Our friends and families slowly digested our news, and slowly began asking questions.  There were things we didn’t know – and a whole bunch that we still don’t.  But we talked things through, weighed different scenarios, and made decisions.  Some were the right decisions, and some weren’t.  And Coleman grew and changed and challenged us in many ways, and we held our ground, trudging rather than galloping, through the unknown territory.  Through countless conversations, complaints, grumbles, and celebrations, we have all learned alongside Coleman about Autism in general and him in particular.  And we are all still growing, still learning - Coleman, Billy, Me, the girls, our families and friends.  We hold onto hope and faith that this journey will lead to a wonderful future.  And as we get there, the unending love and steady encouragement we get from everyone will keep our boat afloat, and I think, make us all the better for having walked the path together. 

Sleep

Day 27:  Sleep   

I have been avoiding this topic, not really wanting to go here.  But with just 4 days left, well, if I’m being honest, this topic deserves a post.  It is what it is.

My kids were never good nappers.  Ever.  While my sister’s kids would sleep for 3 or 4 hours at a whack, my kids would get a quick 50 minutes under their belt and wake up full of energy.  “What are you putting in that bottle?” I would ask jealously.  But although their napping schedule was less than optimal, their sleep schedules were always great.  They all went to bed easily (ok, maybe that’s a stretch referring to Emma who still to this day does not like to go to bed) but perhaps more importantly, they went to bed alone.  I was fairly militant when it came to sleeping in your own bed.  And then came Leukemia.

On that first day that Coleman was admitted to the hospital for Leukemia, we learned we would have to stay there for at least a month, maybe longer.  It seemed like an eternity.  In the beginning, Coleman slept in a crib while Billy or I slept in a chair that slid lengthwise into something sort of like a recliner.  But as the chemo wore on, Coleman became increasingly uncomfortable and the only way to console him was to ride him in the carriage or to hold him.  He slept many nights in that carriage, but even more nights he slept in our arms. And so the sleeping alone problem began.

When we returned home from Children’s the following month, Coleman was still quite sick:  he was still receiving chemo 3 days per week on an outpatient basis at the Jimmy Fund and he was as uncomfortable as ever.  Sleep was fleeting for him, Billy and I, and what we did get, we got together, Coleman nuzzled between us.  As his eating diminished and he slowly lost weight, I was terrified he would die in his sleep.  I needed him beside me to hear his breath, to make sure he was o.k.  And then when the feeding tube was finally inserted, I was constantly worried that he would pull it out overnight.  So for the next three years, we slept beside Coleman.   And when the final remnant of chemo left our lives with the removal of that feeding tube a year and half ago, we were out of excuses.  Except that now we had this little boy who only understood that sleep meant us laying down with him.  Please, save the lectures.  We are quite aware what we have created and what we need to do to fix this.  It will be two weeks of hell and then it will be over.  We are getting ready. 

Even the process before Coleman goes to sleep is tiresome and in need of an overhaul.  Stocked with OCD requirements, there is a full regiment that needs to be completed before he will even lie down.  The craziest of these is – are you ready for this insanity – Coleman stands in the girls room at one side of the house as the girls and I run all the way down the hall to my bedroom at the other side of the house, waving our hands and laughing, and then run back, and pretend we are going to tickle Coleman.  He stands there completely excited and laughing hilariously as if this was the first time we have ever done it.  We have done this every single night for months.  Even our fabulous neighbors must wonder about our mental competence as they see through the hall windows us running down the hall every night waving our arms.  This foolishness started out as a game – we did this one night as Coleman stood at the girls room doorway wondering what we were doing as we ran down the hall, only to hilariously laugh when we turned around and ran back, pretending to get him.  Oh, he loved it and his laugh is so genuine, so deep from the belly and contagious.  And I don’t even remember, but he probably had had a bad day, and we were relieved to see him laugh.  So we did it again.  And the next night when he asked, we did it again, all of giddy, laughing repeated and we loved it.  And, well, that is the problem with children like Coleman.  You have to be very careful with what you repeat, however much you all love it.  Because it takes almost no time at all for that little activity to become compulsive for Coleman, for him to need in order to move on with his night.  And we weren't that careful with this one, and now it’s just part of the routine.  I’m betting some of you are questioning your own judgment in allowing your kids to sleep over here, certain that I have completely lost my marbles. 

As for his actual sleep, Coleman does not fall asleep with ease.  It takes him about 30-40 minutes to fully unwind, to quiet all the thoughts that are racing through his mind.   As soon as he lies down, he starts talking.  He can’t control this – he is neither trying to be fresh nor trying to avoid sleep.  It is the only way he unwinds.   He goes through all kinds of talk, ramblings of things that happened that day, things that may have happened months ago but that he is thinking about now, words and phrases that he just likes to say, and of course, scripts from his shows.  Some nights, he literally repeats an entire episode.  Through all of this, I am lying beside him silently.  I don’t say anything except the occasional, “Coley it’s sleep time.  No more talking.  Go to sleep” which is ridiculous because he doesn’t even hear me.  He is in his own zone, and I know he just needs to say it all, get it all out of his head, before he will stop.  Sometimes he stops for a minute, and I think, ah, finally, but in fact, he’s just silently going through this part of the story in his head, and then he suddenly  yells out loudly “WHAT?  YOU SEEE A CLUE?? WHERE? RIGHT THERE? OH GOOD WE FOUND THE SECOND CLUE!”….I groan, knowing we still have a third clue to get through before he will finish.   It’s not always Blue’s Clues, and it’s not always a full show, but it’s always at least a half hour of talking, until he just stops.  I think how his little mind must work – how hard it must be to have all these words and images banging around inside his head, how he simply can’t stop until he gets them all out, and only then is his mind finally clear.  It must be so peaceful for him then, that short interval of time between the end of his words and the onset of sleep, a peace that is impossible for him to find during the day.  He sleeps very soundly then, all night.  And in the morning when he wakes it’s like the power is turned back on, and all the familiar words, phrases, scripts immediately start again.  Along with these, of course, come the requests  “Time to wake up? Time for juice? I’m hungry!”  

So now it’s out there, this craziness that we call Going to Sleep.  It’s not as bad as it likely sounds.  We are quite used to this routine, and it’s not necessarily always unenjoyable.  I know that there are plenty of children on the Spectrum that have sleep issues – including trouble going to bed, trouble sleeping through the night, and sleep walking.  I had a friend whose brother would wake in the middle of the night and go outside.  For a year, his mom had to pull the couch in front of the door and sleep there to prevent him from going out.  So, while our sleep regimen is hardly ordinary, it’s not as troublesome as it could be.  Still, we are fully aware of the need to change the parts that we can change.  Coleman will learn to sleep on his own, that I am sure of.  It will not be an easy change, but it will happen.  And then I will listen quietly from my bedroom as he finishes his nightly scripts, and his mind reaches the peace it yearns for.  And then we will all sleep.

Things We Love

Day 26:  THINGS WE LOVE

Ok, finally I can post the happy post about the things Coleman loves.  He woke up in great spirits this morning, another good night of sleep under his belt.  He went straight to the play room as always, along with his “yo” and juice, pushed the button for the t.v. and waited for me to come in.  He has specific requests each day – “Please Backyardigans Heart of the Jungle?” – we have them all on our DVR – and he knows every show, every episode by heart.  God help us if the cable box ever dies.  This morning Peter Rabbit was on the show before I went in to change it to his request.  But he was already engaged in Peter Rabbit – he never gives himself the chance to enjoy new shows, just quickly saying ‘No, Backyardigans please!” but today he watched.  He stood bouncing and laughing watching the show for the full half hour it was on.   That’s always a sign for a good day.  Even with the rain, we managed to stay happy. 

So before this blog ends I thought you ought to at least know some of the things that Coleman loves, and not just what ticks him off.   Aside from his show, of course, there are his guys.  We’ve already covered his love of these little figures, and that is the one constant that has never changed.  He spents a long time, laboriously lining them all up several times each day, and talks and talks and talks to them.  Please be particularly careful around them in the morning so as not to accidentally bump them and knock them over or else the whole process of setting them up starts over.   Make an omelette and grab a cup of joe because this is going to take a awhile.  Aside from his guys and his shows, Coleman loves a whole lot of other things too.    

My favorite thing that Coleman loves is hugs.  It is not lost on me for one second that many children on the Spectrum do not like to be touched at all, let alone hugged.  I can’t imagine how hard that must be, knowing that a hug can spark a meltdown, or that a hug causes your child to stiffen up in complete discomfort.  I know some children like this and it’s got to be heartbreaking as a parent.  Coleman is not like that, and for that I am so very grateful.  Coleman loves a hug, and the tighter and stronger the hug, the better.   He will frequently ask “Hug me?” or “Squeeze me?”  And of course, we always oblige.  It’s a favorite request at our house.

Coleman also loves for you to press your palms up against his ears.  I learned this from his school, and he finds it incredibly calming.  I place the palm of my hand over his ears and press gently.  I wish I knew what it was about this that he loves, but it’s easy and it’s soothing for him. 

Watching cars go by is a fairly new favorite, and we noticed it first while we were away at Loon this winter.  We were sitting in the Lodge at the end of the day waiting for the girls to come in.  He was having a snack and watching his shows.  But he became distracted looking out the windows at the cars.  I tried to draw him back in, but he refused, just kept looking at cars coming and going.  After that, every time we met at the lodge, he wanted to sit near the windows to watch the cars.  This was harmless to me at the time, but school told me he was becoming distracted during class looking out the window.  And thankfully we live on a quiet street because I’ve noticed at home he is immediately at the windows when cars go up or down the street.   There is not much we can do, except that we try to not sit near windows when we go places (like a restaurant) to help keep this habit in check.

Coleman loves to watch other kids running.  Actually, he loves to watch anyone running, but typically we don’t see a bunch of adults running around.  At the park, when children run by playing tag, he squeals in delight, rolling his hands in happiness.  When the girls were younger, they would invite friends over and we would all go out front for a big game of dodge ball, with Billy and I on either end trying to peg the kids in the middle with the ball.  Coleman never wanted to play, but he would beg for us to play so he could stand at the sideline and watch.  Like our own personal cheerleader laughing and yelling as everyone scrambled back and forth.  The girls are getting too big for that game now, but Coleman still wants them to play with them and their friends which causes some problems at the house.  He wants to be part of their fun, yelling for them to wait for him as soon as they step outside.  We’ve explained to the girls that this is a difficult change for him, their growing and needing some time with their friends.  This week was a little tough, with Coleman barraging them with orders to Please play ball! Or Please go on Swing!  We’re trying to manage both his desire to spend time with the girls, and the girls’ need to spend time alone with their friends.  The upside of all of this is Coleman’s continued emerging social side and that is a good thing.    

Coleman also loves spending time with his cousins.  They all understand him, and they tend to pay special attention to him, and do many of the things he loves.  Like play hide and seek, despite that Coleman is horribly bad at it.  He will be hiding with Emma, and whoever is it will dramatically stomp around saying “Where could Coleman be…” and of course he replies right from his hiding spot “I’m right here!”  They all laugh and play again.  He absolutely adores this and would play for hours.  They also play tag and jump on the trampoline with him.  He completely loves the trampoline.  From bouncing to playing games, he spends all of his time on the trampoline smiling and laughing.  And the bonus of the trampoline is that Coleman is very ‘on’ when he finished – it’s like the jumping makes him completely aware of himself, of his body and his surroundings, the blood flows throughout him and he is just really involved afterwards.  His speech is better, his thoughts are cohesive, and he is engaged.  Total bonus of doing something he loves.  In all, the most playful interaction Coleman gets, he gets with his cousins, and we are very grateful for them.

As I’m sure I have said many times already, Coleman also adores the park.  He has a little routine he does when we get there – a specific order in which he does the various activities:  First is the big red swing, then the tunnel, then the small yellow slide, etc, until ultimately we end at the large climbing section with several slides.  We spend the most time at this section, and I still climb up the whole thing with him every time.  I chase him, we play the Grumpy Old Troll, we race down the slides…all good fun.  Except that I am a grown woman among a pack of 5 year olds.  The young Yummy Mummies with their latte’s and hip baby bags stare in disbelief with raised eyebrows at my antics.  Right.  Because I’ve been just dying to go down a slide today.   But my little man loves it all so I ignore the looks and keep moving. 

Coleman is not able to ride a bike.  We have tried several, but he just hasn’t been able to understand the need for continuous motion on his feet.  He’s also not very strong, so I suspect strength plays a part as well.  We bought him a new bike two summers ago, hoping we could get him on it.   He willingly gets on, but we can’t get him to keep pedaling.  I’ve crawled along the street, pushing his feet around with the pedals, tried Velcro to keep his feet on the pedals but he still has not picked up the concept yet.  I’m hoping this summer might be our break.  In the meantime, my mother bought us this amazing, fabulous bike called a Taga.  Coleman is too big for a traditional bike seat on the back of a bike.  He also lacks the balance and coordination for a tandem bike.  This Taga bike is a large three wheeled bike with an oversized seat on the front.  Coleman loves it.  He sits in the front watching everyone like a king.  His favorite thing is to ride down big, long hills, the breeze blowing in his face, all the while yelling “WHEEEEEEE!”  It is awesome.  But the problem is for every hill you go down, you have to go back up.  And I’m not the most in shape human being out there.  And Coleman, while small, is still 45 lbs of solid weight.  So the thrill of the ride for Coleman is at least partially offset by distress of the ride home for me.  J  Still we love that bike, and we are so glad we have that option for Coleman. 

Like the bike, pretty much all things that go fast Coleman enjoys.  First with sledding, we had to drag him to the hill. “No thank you” he kept saying.  Until finally Billy threw him on my lap and pushed us down the hill on the sled.  “Noooo” for the first minute, then laughing, then “Again?” at the bottom.  He’s been hooked ever since.  We barely come to a full stop at the bottom and he is already saying “Again?”  Similarly, we took him to his first water park a couple of years ago.  As we stood in line on the stairs up to the slide, Coleman kept saying “No, you don’t like this!” (He gets his pronouns mixed up often).  “Yes you do, it’s fun! We’ll go fast down a big hill!” I replied.  “No thank you.”  But I kept talking it up, saying how great it was going to be, until we got to the top.  He still had on his socks and sneakers.  I bent down to take them off and he started to panic.  “NO THANK YOU!”  he squealed, starting to make a scene.  It was our turn to get on and the line was all the way down the stairs with others waiting behind us.  “Come on bud, this will be fun. Just come here.”  I tried to coax him over, but he wouldn’t budge.  I said to the teenager working there:  “I’m going to grab him and pull him on.  He’s going to yell but it’s ok.  Just give us a push.”  So I grabbed Coleman, pulled him onto the tube in between my legs , sneakers and socks still on, and off we went.  He fought me most of the way down, as I held him tight.  We were close to the bottom when he stopped fighting, and a couple of seconds later when we landed in the pool with a splash, he looked at me a smiled.  “Again?” 

Roller Coasters – and by this I mean small baby roller coasters – not Six Flags Roller Coasters – is something else Coleman really loves.   We take Coleman and the girls every summer to Santa’s Village in New Hampshire.  We went for the first time two years ago – I had never taken the girls when they were small – and my first thought was we could have saved a bundle of money had we gone there instead of Disney when they were young.  It’s a great place for young kids.  The girls are too big for it now, but they love to come and see Coleman so excited.  He LOVES it there.  We head straight to the roller coaster – he is very patient in the lines which can be hard – and we ride for the two minutes it takes to zoom over the tracks, and as it screams to a halt, he yells “AGAIN!”  He loves getting off and running around the side, back in through the windy entrance, and then back on again for another ride.  We seriously do this about 20 times in a row, with the exact same response every single time: “Again!!”  We then talk him into taking a break from the roller coaster and head over to the Log Ride – a typical amusement park attraction where you ride in a log boat, go up a huge hill, and then fly down it, splashing water everywhere.  Coleman likes this one a lot too – not as much as the roller coaster, but a lot.  As we come around the corner at the top, just before we drop, he grabs my hands and puts them tight around his waist, and then laughs at the bottom.  He even tolerates the water splashing pretty well.  So we go on this one 5 or 6 times before heading back to the roller coaster.  And we do those two rides all day. Just those two, no others, all day.  And none of us complains a bit.  Because the Santa’s Village trip is for Coleman – and nothing makes us happier than seeing his elated smile all day long. 

Another fast thing Coleman loves is go-carts.  Last summer while at the Cape on vacation, we went every night after the beach.  It was partly how we got him through the full day at the beach, the promise of the go-carts looming on the ride back.  And even waterlogged and tired, he talked excitedly about it as we drove the 20 minutes across the Cape to go.  Back at home, I’m grateful there was a place that was nearby.  We went quite often during the summer.  The young guys that worked there liked Coleman and were good to him, letting him ride multiple times without getting off first.  When the sign went up in the fall that they were closing the next weekend, we went every night for a week, prepping Coleman that in 6 then 5 then 4, etc. more days the go-carts would close for a long time.  He still asked after they were closed, but handled the closure pretty well.  Now that the weather is getting better, pretty soon we‘ll start venturing down again. 

The last thing I’ll mention that Coleman loves is swimming.  He loves our pool, but finds it more enjoyable when everyone is in swimming – quiet afternoons are less appealing to him.  I think I already mentioned how he likes to watch everyone jump.  It gets old pretty quickly for the jumpers, but never old to him.  Other times, he’ll take his guys into the pool and spend a long time lining them on the ladder or the stairs, talking away to himself.  My favorite Saturdays in the summer are those days that he is happily playing with his guys in the pool, the girls are floating around talking together about something, and Billy and I have a moment to sit and enjoy it all.  This I love.     

Even more than the pool, Coleman loves the beach.  It was a long time coming, I’ll tell you.  We are beach people.  We go early and stay late, order dinner there….  Any day at the beach is a good day in my book.  But Coleman was not initially a fan.  He hated sand, and refused to even stand on it so we use to carry him down to the ‘wet’ sand.  And even then, he wanted to be held in the water – didn’t want to touch the bottom with his feet.  But not liking the beach was not an option for us. So we kept at him, taking him and trying to last a little longer every time.  We are grateful to our good friends who have a house near our favorite beach, where we would take Coleman up for a break in the middle of the day.  He could watch his DVD in peace, have some “yos” and re-charge his brain so he could last a few more hours in the afternoon.  Our days at the beach now are wonderful.  He is still not a fan of the sand – it’s ok to walk on but insists the sand is cleaned off of his feet as soon as he sits down.  We are a bit like the Clampett's at the beach, we bring so much stuff.  Billy laughs as we get it all pushed into the back of the truck before we head out, asking “Got it all Ellie Mae?”  But these things keep Coleman happy and content at the beach. And that keeps me content and happy at the beach too.  We bring a small plastic table and chair – yes I said table – for him to set up his DVD and watch his shows on when we take a break from the water.  This is essential to the longevity of our stay.  We bring his DVDs and his guys (we always count them, and never let them out of our sight).  The rest is the typical stuff you take to the beach.  Coleman most enjoys being in the water so you had better be ready to go in if you take him.  He is unfazed by cold water, and has no fear, so he will walk right in up to his neck regardless of the temperature.  This is the only not-so-fun part. J  He loves waves the most – he is very good at paddling his feet to jump up over the waves and he screams in delight as he sees them approaching.  I hold his hand tightly and as the wave come sup, I yell "Jump!" and up he goes, usually getting above the wave.  But many times the wave covers him, but he just laughs, grabs my hand to wipe his eyes, and screams “Again!”  He stays out there for literally an hour or two, laughing and happy the whole time.  Only that I plead with him for a break does he actually retreat to the sand for a snack or lunch.  This summer was the first time we got him to sit in the sand – he didn’t love it but tolerated it.  The girls helped him make a big castle and moat for his guys, and we tried to get him to play with them in the sand.  He tried, but it was a little overwhelming for him.  Still we made great progress and I think this summer we’ll get even farther with that play.  Once he is out of the water, it is no longer than 20 minutes and he is asking to go back in the water.  Which we do.  It’s pure joy to watch him, and by days end, we’ll have spent 5 or 6 hours in the water.  We are all water-logged and exhausted from all the fun.  It was worth all the years of pushing him. 

So there are many things Coleman loves to do, many things that bring him joy.  Some came naturally, and some we had to push him on.  And while that doesn’t always work, sometimes it does and that makes it worth the effort every time because you simply never know.   These things are not available to us every day:  some are once a year thrills, some are seasonal, and some are dependent on good weather.  But when we can, we try to do as many of these activities as often as possible.  Even if we do look like the Clampett's. 

Relief

Day 25:  Relief

The night before last, after Coleman’s very tough evening, he was up from 3 a.m. until roughly 4:30 a.m., something he never does.  So when my alarm clock went off for work yesterday morning, I was already too tired for the day.  Fast forward 12 hours later, and another difficult night with Coleman, well, I simply couldn’t gather my positive energy to put together a thoughtful, meaningful post.  We just needed sleep, all of us.  So I apologize for last night’s glum post, and thank you all for the kind, supportive comments on my facebook page and email.  I’m so grateful that a good night’s sleep can do wonders for improving your outlook.  Today was a better day all around for everyone. 

My friend who is a BCBA and knows Coleman well came over this afternoon.  She has seen Coleman in every environment and completely understands him.  I was so grateful when she arrived, just to talk out some of the problems we have been having lately.  It’s incredibly important to have a friend like this, someone who understands professionally and sympathizes as a parent.  More than anything else she listened as I rambled on about the escalating behaviors we have been seeing in Coleman lately, and the culmination over the past several days.  She reminded me that like all our kids, Coleman is growing and changing, and what he liked yesterday, what worked yesterday, may not be the same today or tomorrow.  And that we need to adjust our approach as he grows.  We also talked about the need for an in-home assessment and plan to be conducted by a BCBA.  This was approved as part of Coleman IEP in January, and we have yet to see the services begin.   We fully supported this recommendation, because Coleman’s behaviors were already starting to change back then.  We recognized that we needed help, and not because we are incapable parents.  Well, maybe we are incapable parents, but that’s another story.  A BCBA will look at functional behavior, assess the entire situation objectively and likely point out negative reinforcers that we have become blind to.  She’ll define a behavior plan that will address the source of the problems, and that will then become our responsibility to enforce.   We are waiting patiently for this assessment to occur, and have finally reached out to the Superintendent for help.  My friend helped me remember that the plan will help, that we will get there, that Coleman has not permanently turned into the HeMan from Hell.  It will get better, she reminded me.  Ah, sometimes you just need to hear that out loud.   Thank you L.

Coleman is not entirely innocent in all of this – we are keenly aware of this fact as well.  Because his abilities are changing, we need re-set his boundaries, re-set limits on what is acceptable and what is not acceptable, and this is never fun or easy.   And Coleman will need to learn that batting his adorable eyes, or sweetly saying   “I’m good.  Okay now?”   is not sufficient to make up for the nightmare that preceded the comments. 

So we all have our work cut out for us, just like every parent and child out there.  And Rome wasn’t built in a day folks, so let’s not expect miracles.   As for today, it was monumentally better day than the prior two days.  I took the day off from work and tried to set a specific plan for Coleman for the day.  I outlined some of the things we would do (First we’ll have breakfast, then we’ll go to the park, then we’ll do puzzles and color, and then lunch…) He thrives on this kind of structure.  We hit the park twice, once in the morning and once in the afternoon, thanks to cooperating weather, and at the end of the day, we went to my brother’s and jumped on the trampoline for an hour.  The good news is that we had a great day, and made it into bed fairly early.   The bad news is that I’m about an inch away from buying a foolish trampoline.