Immeasurable Gifts

My beloved Daddy and Callum at his 3rd birthday party. Taken a few weeks before his passing.

Today, I am guest posting over at Childswork/Childsplay.  Please visit me there by clicking “Continued”.  🙂

On the day after Thanksgiving, I threw myself into Christmas.  I woke up my husband early and insisted he go and get the tree and ornaments out of storage.  It is our first Christmas in our new home, so I was determined to make it a good one.  It is awfully hard to not have fun decorating with little ones.  I loved every minute of it.

But for all the tree-trimming and elf-on-the-shelf fun, this year it is bittersweet.  It is the first Christmas without my beloved daddy, who died in May.  Daddy loved Christmas.  He was one of those rare people who get the true spirit of the season.  He whistled Christmas tunes everywhere he went and put up tacky decorations everywhere just for the joy of it.  He couldn’t care less about gifts.

Continued…

Yes, I Ate a Cracker: On Hyperemesis (and Autism)

From the time I was a young girl, I always wanted to be a mother.  I assumed that I would have my children young.  (I didn’t.) And, because I never suffered with any “women’s troubles”, I also assumed that I would have a wonderful pregnancy.  I had visions of pregnancy as a joyful time of eating bon-bons and wearing cute maternity clothes.  For some reason, even the idea of childbirth itself didn’t trouble me particularly.  I had a lot of faith in Western medicine and was confident an epidural would take care of all that.  So, when I found out that I was expecting, I was thrilled.  I raced out to buy my obligatory copy of What to Expect When You are Expecting.  And I made a long list of possible names.

Exactly six weeks and one day into my pregnancy, I felt a little ill following breakfast.  I raced to the bathroom to throw up – and never stopped.

At first, I was sure that it was typical morning sickness.  I tried various wisdom remedies.  The ever-present cracker, ginger tea, sucking on a lemon, motion sickness bands, over the counter nausea syrup, etc.  I’m fairly certain there is nothing I didn’t try.  A couple of weeks later, the nausea and vomiting was steadily increasing.  I wasn’t functioning at work.  I was there, but often yakking in the bathroom.  I had attempted to keep my pregnancy quiet at work, but my obvious sickness made it an open joke.

Everyone, including me and my doctor, thought it would go away.  But it didn’t.  After a couple of incidents of in-office IV fluids, I was prescribed Phenergan.  It barely touched the vomiting, but did nothing for the nausea.  What it did do was keep me so heavily sedated that I could sleep away a lot of my misery.  But my performance at work suffered — a lot.  I was just showing up, in between days of not.  After being admitted to the hospital for a couple of days due to dehydration and high ketone levels in my urine, I was prescribed the anti-emetic Zofran.  (Zofran is often used with chemo patients suffering from nausea.) At that time, it was over $1000 a month – with insurance.  I ended up finding a Canadian pharmacy and had it shipped to me for around $350 for a three-week supply.  On Zofran, I was down to once or twice a day vomiting.  That enabled me to keep things down a bit better, but the nausea remained for the duration.

Please do not ask a hyperemesis sufferer if she has “tried eating a cracker”.

It was during that time that I learned the name of what I really had.  Hyperemesis Gravidarum.  Hyperemesis occurs in less than 2% of pregnancies and is marked by dehydration, malnutrition, and other serious complications.  In its most severe form, renal failure and even death can occur.  (Although, with the advent of total parenteral nutrition and medications, this is rare today.)  The writer Charlotte Bronte (Jane Eyre)  is thought to have died from hyperemesis.  Approximately 10% of HG pregnancies are terminated for the health of the mother.

Emotionally, I sank to levels of self-pity that I’m not proud of.  Even though I knew that having a terminal illness or chronic condition wasn’t at all the same thing  (for my having a light at the end of the tunnel), I suddenly empathized with everyone who had ever endured chemotherapy.  I wasn’t in pain.  I still don’t know what day in and day out pain feels like.  But I know all about the effects unrelenting nausea and vomiting.

I was vomiting blood for 8 months.  Your throat gets so irritated, that you pass blood when you throw up.  I sported petechial hemorrhages all around my eyes for the duration of my pregnancy due to all the vomiting.  And I popped a few blood vessels in my eyes as well.  Riding in a car can feel akin to hurtling down a roller coaster.  There were few, few moments at all that I wasn’t distinctly aware of being pregnant.  Simply because I was so sick.  I felt the urge to throw up every moment of every day – without fail.  It was suffering on a scale I am shaken to remember.  (I don’t think there has ever been a woman quite so happy as I to be induced with Pitocin.  Ironically, for all the misery of the pregnancy, my delivery was a breeze.)  But for months afterwards, I experienced depression.  My body was greatly weakened.  Four days after I delivered, I was 20 pounds less than when I got pregnant.  It took weeks for the nausea to slowly ease and for me to be able to eat anything resembling a full meal.

The inventor of Zofran has assuredly been reserved a nice pad in Heaven.

But what exacerbated the misery of it all was the ignorance of family, friends, and acquaintances who’d never heard of hyperemesis.  When it is explained to them, many respond with suspicion.  It is assumed that hyperemesis is just a pretty name for the morning sickness that most pregnant women experience at some time.  So, sufferers get a lot of unhelpful advice.  If only I had the proverbial dime for every cracker discussion I endured.  People suspect what they don’t understand, and they judge accordingly.  I was given guilt trips for losing weight, told that I wasn’t taking care of my baby by being so nutritionally depleted, given condescending pats, assured it would go away, and even told that I was “lucky” they didn’t treat me with what they used to do for hysterical pregnant women — locking them in a dark room until they no longer complained of nausea.  It’s bad enough being sick all the time.  It’s even worse to be told that you are imagining it or you are a hypochondriac — simply because it is beyond their understanding.

Following my first pregnancy, I was erroneously told that the likelihood of experiencing hyperemesis again was less than 10%.  (The actual figures are 50/50 and possibly higher.  After two hyperemesis pregnancies, it is all but certain you can count on a third.)  Wanting another child close in age to my first, I didn’t take the risk seriously enough.  Hyperemesis pregnancies should be planned.  There are high-risk obstetricians with experience in dealing with it.  There are even now 24 hr. Zofran pumps that a woman can wear and go about her daily life.  It is really important to be in the best shape possible before getting pregnant again.  I didn’t.  I got pregnant again less than one year later.  The second pregnancy was much worse, finally resulting in me having to go out on disability until delivering.

Your next question is likely to be one I have wondered for some time.  No, there are not any reported links between autism and a hyperemesis pregnancy that I can find.  However, hyperemesis is not exactly a popular subject of scientific study.  You can find message board threads of HG moms wondering the same thing.  Since the causes of autism have not been anywhere close to being sorted out, and – since the causes are likely to be varied and many – I doubt anyone could say.  However, there is some suggestion that an “environmental insult” during pregnancy could be a cause of autism.  I have my suspicions, and I’m curious to see what science comes up with regarding a possible link between the two.  I don’t think it is beyond the realm of possiblity that nutritional depletion of its mother could be an “environmental insult” to a fetus.  I will say that the concern is yet another reason I have chosen to not have the third child I have always wanted.  My children were well worth the hyperemesis, but I would not want it to endanger a third child.

It has been three and a half years since my last pregnancy.  And I’m still not back to normal.  I have no idea why.  I still wake up most mornings slightly nauseous until I get moving.  Motion sickness is an everyday problem for me.  I have a hair-trigger gag reflex and am much more sensitive to smells and medications.  Now I understand why bulimics have trouble learning to eat again.  It’s because vomiting is a reflex that can be hard to break when you are in the habit.  My mind knows I’m no longer pregnant.  But my body will not forget.  And, while it has occurred to me that I’m simply crazy, there are too many similar postpartum reports from other women like me to think that it is all in my head.  Hyperemesis can, apparently, have effects lasting for years.

A Zofran pump delivers a constant dose of medication that is often more effective than pills.

I wish that I had known more about it before going through it twice.  I adored my doctor and midwives.  But, in hindsight, I know I would have been better off seeing a specialist with experience in dealing with hyperemesis.  (I sure wish I’d known about that pump.)  But it taught me a lot of things.  It taught me compassion for those who suffer.  It taught me to assume nothing about subjects I’m unfamiliar with and to avoid judging others.  It taught me how to endure.  And I learned a lot about who my friends really are.

If you want to learn more about Hyperemesis Gravidarum or you are seeking to prepare for a pregnancy with it, I highly recommend visiting HelpHer.org.  In addition to information, you can find support there as well as a list of doctors with experience in treating patients with the disorder.  That could make all the difference for you for someone you love.

Note: I am NOT saying that autism is caused by hyperemesis.  I’m just saying that I am a human being and that human nature is to wonder.  Since there is no definitive list of causes for autism, and since they are likely to be many, I am merely saying that I wondered if one day a link between maternal nutritional deficiencies and autism might be found.  Obviously, being a mother of an autistic child, I would never dream of attempting to “blame” women for their children’s autism.  For anyone insisting upon being overly sensitive, I might point out that there are, in fact, causes somewhere and that wishing there weren’t won’t change anything. In the end, science will tell the story.  🙂

Morning Has Broken: We Have Words

 “There’s something happening here.  What it is ain’t exactly clear…”

-Buffalo Springfield

Progress is deceptive.  When you keep your eyes on the road ahead, the journey seems oh-so-long.  Long enough that you perpetually wonder if you’ll ever reach your intended destination.  It’s only when you stop going and going and stop to look back that you realize the distance you have already traveled.  And, sometimes, that realization is all you need to get a second wind.  To find what seems impossible may be in the cards for you after all. 

Callum started Pre-K ESE in the spring, right after he turned three.  Placing him in that room on the very first day was the scariest thing I’ve ever had to do.  Other parents, teachers, and therapists kept telling me that I would be amazed at what the structure of the classroom would do for him in terms of language and social development.  I don’t think I really believed them.  Not because I don’t have hope for my child.  I do.  It’s just that hope can sometimes be a dangerous thing.  It can let you down.  With a severely developmentally delayed child, you have to walk the nearly invisible line between acceptance for what might be and hope for what could be.  When you do one, you risk denying your child the other — in an endless cycle of “I need to do better”. 

But since returning to school this fall – to the same teacher’s class – we cannot deny that Callum has made progress.  On all fronts. 

A few weeks ago, we began receiving reports of words from school and daycare.  And not just randomly repeated words out of context.  But words Callum knows and made the choice to use.  “Peesa” (pizza), “mi” (milk), “pees” (please), “I sowwy” (I’m sorry), “tantu” (thank you), “goo ja” (good job), “nana” (banana), “come ah” (come on), and more.  It seemed to happen all at once. 

But it hasn’t been just words.  There’s been a kind of strange give and take in our verbal interactions with him — even when he’s just babbling.  His babbling sounds like sentences in a foreign language.  And they have a distinct tone — silly, happy, etc.  The amusing one is when he is displeased.  You can tell you’re in big trouble with that one as he furrows his eyebrows, raises his voice, and emphatically babbles his displeasure.  That one inevitably follows being told that he may not have more chocolate or jump on the couch.  Or both.  The important thing is that he is clearly responding to what we say.  He responds when asked a question and usually when told to do something.  And it’s often like a conversation.  It’s different from before – in some way I can’t exactly qualify.  But everyone sees it.

And then there are the social differences.  His teacher, whom we think the world of, reports that he is understanding and following classroom routines.  He sits in circle time, follows the yellow line when walking, and holds is backpack.  No, he isn’t mastering any academic goals yet.  But social conformity precedes learning.  It’s a foundation on which we can build.

He’s also getting into things more now and starting to get in trouble.  It gets harder each day to look dutifully stern when he gets a naughty twinkle in his eye before attempting yet again to break the rules.  He knows he’s being bad – and he is delighting in that knowledge.

And when he isn’t looking, so are we.

If I had to boil it down to one description, it would be this:  Callum — the boy — is in the room with us more and more, not just his body.  He isn’t playing quite yet, but he has shown more interest in some toys.  He is requesting things other than food (such as bringing us his shoes when he wants to go for a drive).  He is swaying to music on occasion.  And discovering that he can open things and make a mess.

Callum, in short, is emerging from behind the wall of autism. Yes, I know the wall will always be there.  I know it is a part of him.  He will always be different, and he will always slip behind that wall sometimes.  But he is learning that things on our side are kind of cool too.  He is seeking us out and realizing that we will consistently meet his needs — especially if he makes them known to us.

And with this comes a level of wonder you can’t begin to know unless you have a child whose developmental milestones aren’t guaranteed.  Each one met is precious and must be celebrated without the assumption of the next to come.  Living in the moment takes on new meaning when patience becomes a choice over a virtue.

No, nothing this little boy does is taken for granted.  Every word, every interaction, every anything he didn’t do before becomes a blessing.  And that, in itself, is a blessing I could have never anticipated just a few short years ago.

Yes, we have words.  But with that, we have so much more.  We have hope.  And a song in our hearts — whose tune we have sometimes forgotten.

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the Word

–Eleanor Farjeon

Ask Me No Questions: On the Child I’ll Never Have

When you have a young child with special needs, it is only a matter of time before you are asked a very personal question.  Are you planning to have another child? 

Some would consider this a straightforward question.  Others would call it rude.  I’m of the opinion that it depends upon who is asking.  If it is a close friend, that’s okay.  If it is an acquaintance, then it is presumptuous.  (And if it is a nosy, judgmental person, then it is outrageous.)  It’s not really fair, I suppose, to accept the question from some but not others.  Then again, some people have a key to my house – but not others.  Most things in life are simply relative.

It seems like a simple question.  People ask it all the time of newlyweds — though they shouldn’t.  But, when you ask it of a special needs parent, the question is loaded with implications other than the cost of diapers.  In our case, the question is echoed by many other questions — all silent, yet screaming. 

Don’t you want to try again for a “normal” child?  Don’t you want to give your “normal” child a playmate?  Are you going to take a chance on having a child with the same condition?  Can you afford another child with the same special needs?  What if…?

“What if” indeed. 

The decision to not have another child is a very personal one, for all parents — but especially for those with special needs kids.  And one that doesn’t come with a correct answer.  I wouldn’t dream of suggesting that another parent make the same decision.  It depends on who you are, and it certainly depends on your circumstances.  Regardless of the choice one makes, it is fraught with worry and the judgment of others. 

I always wanted at least three children.  Being an only child, I envied those with large families.  When Sean and I married, I made certain he was on board with this plan.  Even during the worst of two hyperemesis pregnancies, I was still determined. 

When my second child began to show signs of autism, however, we put off the decision.  Between shuffling our NT child to preschool and ferrying our son to therapy, a third child seemed out of reach.  Until now, we just left it as a big maybe. 

I turned 39 recently.  And, although many women choose to have children later these days, the risk of conceiving a child with genetic abnormalities increases with age.  And the current statistics are that a woman with one child on the spectrum has a 1 in 10 chance of having another. 

But the truth is that our family – on both sides – is filled with so much “otherness” (ADHD, autism, gifted, mental illness, and more) that I believe the odds are significant that we would have another “other” child – perhaps one even more severely affected by…whatever. 

If money were not a factor — say, I won the lottery?  I probably would. If I could ensure that, no matter what, a third child would be cared for comfortably and with dignity, then…maybe.  But even then, I must consider the needs of the two I already have.  One who is already greatly impacted by autism and one that will possibly bear the burden of responsibility for him one day.  To take a chance that a third child would not be an additional responsibility for her – simply because I want one – is, I think, unfair to Bronwyn.  She deserves to live her own life, have her own children — and not care for mine.  No,I don’t consider Callum a burden.  And, no, his future is not yet written.  He’s beloved, and I wouldn’t trade him.  But one person’s adult special needs child is eventually another’s burden.  That’s reality.  For me, I have decided to stop with two. 

But that child I’ll never have?  She had a name. Already.  I knew she would be a girl, and her name was Kerith Grace.  I am sad I won’t have her.  Another baby asleep on my chest in the wee hours of the night.  Another first smile.  Two more soft chubby arms wrapped around me.  Another set of pattering feet on Christmas morning.  More laughter.  More love. 

Motherhood has been the greatest blessing of my life.

This isn’t a tragedy, I know.  It’s merely one of those things in life I will yearn for and not have.  But, unlike going on safari or digging up artifacts in an ancient city, this is a dream whose scent I know.  And remember.  I can still hear the little coos of my nursing babies and feel their tiny little hands against my skin.  This yearning is tangible and primal in a way that other unrealized dreams will never be. 

So, yes, I will miss this nonexistent child.  As I’m sure do countless other mothers and fathers whose choice to not have more children is a a sad one. 

But here is what I do have.  And it is already so much more than so many others have.  I have had the joy of growing two new lives within me.  Nurturing and loving them.  Every single day of my life, I get to hear my little girl yell “Mommy!” excitedly at the end of the day and have the exquisite pleasure of snuggling with my little ones each morning and night.  That’s no consolation prize.  It’s a blessing.  Two, in fact.

But having had to make this choice, I am now aware of why nosy questions about future children shouldn’t be asked.  Of anyone.  There are many reasons – not all visible -why someone might be unable or unwilling to bring a child into the world.  Some painful, all private. 

No, this question is best left unasked.  If happy news is on the horizon, you can be assured you’ll be invited to the shower anyway.

As You Are: An Open Letter to My Son

Callum planting one on his pesky big sister for the very first time.

Today, I am honored to be guest posting on Childswork/Childsplay.  Some of my favorite bloggers are regular writers for Childswork/Childsplay, so I was thrilled to be asked.  🙂

And, if you will be so kind as to remember Callum in your thoughts and prayers, I would greatly appreciate it.  He is hospitalized right now for abdominal pains and tummy troubles.  It’s been a long night for us both and hard on this mama’s heart to watch him suffer.  

Please click below to read the entire post.  

Dear Son,

I don’t know if you will ever be able to read this.  I don’t know that one day you won’t be able to read books of all kinds and share your thoughts with me.  You are only three years old and are mostly non-verbal.  You are autistic – which means you are affected by a neurological condition that impacts communication and processing.  At this point, much of your behavior is influenced by autism.

But here’s the thing.  Every human soul enters this world with a personality that is unique.  And, although you certainly will change between infancy and adulthood, the part of you that is you is apparent from the start.  Yes, autism is an inseparable part of who you are.  But it isn’t all of you, baby.

Most children are loved by their parents.  That is the birthright of every human being.  But not every child is liked by her parents.

Continued…

I Talked to a Bunch of Third Graders…and I Liked It

If you are a regular reader, then you already know I don’t often invite guest bloggers to post here.  But my friend Lizbeth who blogs over at Four Sea Stars wrote an awesome post today about a subject close to my heart — parents speaking fearlessly about autism directly to those who are in their child’s life.  I believe in this approach and have often lamented this wasn’t done for students I’ve known in the past.  Lizbeth’s approach to speaking with these kids was genius.  And she succeeded in positively impacting the relationships between her son and his peers.  She also made me cry. 

If you are thinking about taking this approach to helping your child’s peers and teachers better understand him/her, you need to read this post.  It will warm your heart. 

-Leigh

I went into school the other day to talk to Alex’s class about Autism.  Nothing instills fear in me as much as talking to a small hoard of third graders.  Kids—they are unpredictable, they are young and for the most part, they say what’s on their mind.

They scare me.

Earlier in the year we had an incident where Alex was bullied and that spurred the question of, “What do the kids know about Autism?  Do they know anything?  Do they even know he has it?”  The answers came back as no, no and no.  The kids knew nothing.

I though that maybe if they knew something, heck anything, there may be some compassion.  They may have some understanding of why he does what he does and maybe with understanding would come some form of acceptance.    

I’ll be the first to tell you, I worked with our school to do this.  Our teachers are great and in some ways I am really blessed.  They get it.  They get Alex.  They get me and they are willing to work with the things I suggest.

I had a PowerPoint presentation and from that presentation, I made a book for each child in Alex’s class.  I wanted each one of them to have something to bring home so their parents could see what we went over in class.  Truth be told, I did it in the hopes that the parents would know what I talked about, and maybe just maybe, there would be further discussion at home.

Anyway, it turned out to be really interesting.  And enlightening.  For all of us.  The kids were really interested.  The teacher had told the students on Monday I would be coming in, later in the week, and asked if they had any questions about Autism.  None of the kids knew a stitch.  They wanted to know things like:

• Can I catch it?
• How do you get it?
• What is it and where does it come from?

So when I went in last week, we had the presentation on the White Board.  They use this all the time in class and it’s basically a computer screen on a white board (imagine that) on the wall.  The kids all sat around in a circle eating their snacks and before I could even start a boy asked, “What is it?”

 

Continued…

Breathing Room: On Tiny Houses

Now I know the feeling.

All across the country right now, on morning shows and news sites, the tiny house movement is all the rage.  It’s a cool concept.  Folks sick of chasing the ever-increasing size of the American dream re-evaluate their needs and downsize their homes.  The idea is to take quality materials, some ingenuity and efficiency in design, and construct a home less than 800 square feet or so.  Tiny house proponents point out that a person can own their own home for around $10,000 – give or take a few for size.  Tree hugger types think it’s pretty groovy, as tiny home dwellers reduce their carbon footprints and have to find new and often green ways of doing things. 

I think all this is great.  Really, I do.  At least in theory – and for somebody else.  You see, I happen to know from experience that a tiny house is not for me. 

Four years ago, my family went through some tough times.   We had just had our first child, following an awful pregnancy.  I had hyperemesis my entire pregnancy (and the one that followed).  This meant that I was out of work a lot.  I was hospitalized a couple of times, went through some expensive testing, and still incurred the typical costs of a normal delivery and hospital stay.  My husband was laid off from his job, and money got tight.  When the larger home we were renting became a struggle to afford, we made the decision to move into my very small rental home.  I’d lived in it before – when I was single.  We knew it would be a bit of a sacrifice to downsize from a three bedroom/two bath to a two bedroom/one bath, but we went for it anyway.  We packed up a bunch of our stuff, put it into storage, and moved in.  We intended it to be for a year.  But autism therapy, the economy, and further health problems intervened, and we eventually made the decision to live off of my teacher’s salary alone and put my husband through nursing school.  One year stretched to four. 

Now I do not want to give the impression that I was ungrateful to have a roof over my head.  We knew it was a blessing to have the option to live somewhere rent/mortgage free.  Really.   And it was okay for awhile.  Our daughter was just 5 months old, and she didn’t take up much room then.  That is, until 15 months later when she was ambulatory and her baby brother came along.  By the time he starting walking too, we began to sympathize with sardines.  Tiny house lovers can do and live as they wish.  I’m glad they’re happy, and I know it’s great for some folks.  But I’m here to tell you, less than 800 square feet is not a lot of room for a family of four. 

We tried getting inventive.  We closed in the back part of our car port and created a combination pantry, storage, and communal closet.  We installed floor to ceiling shelves in our bedroom closets.  And we even installed floor to ceiling shelves on one wall in the kids’ room.  We used underbed storage.  Space saver bags.  We even pulled up a trailer bed and decided to de-junk our lives of anything we hadn’t touched in a year.   I kept saying that we just needed to think more like NASA – to think small, outside of the box, and to use every inch of vertical space that we could. 

But I hadn’t considered something that those smart folks at NASA do.  They actually take into consideration the psychological effects of cramming so many people together in a small space.  They know it’s stressful.  They have teams of psychologists who plan for this stuff.  Theorizing what might happen in a similar scenario on futuristic trips to Mars and such.  They don’t underestimate the potential impact.

One would think that it is easier to keep a tiny house clean.  But it’s not.  When everything you have is right there, then everything you have is right there.  Underfoot.  Making you slip, trip, and curse.  Stubbing your toe on every pass.  You open the single medicine cabinet in the house and carefully reach for a bottle in the back – only to have them all come spilling off the shelf.  You attempt to cook dinner and end up being snippy with anyone who dares to enter the kitchen — because there simply isn’t enough room.  You can no longer enjoy the crafts and hobbies you used to, because there is not enough horizontal space to spread them out.  It seems that every time you turn around, somebody is looking for something that cannot be found amidst all the other stuff that has no place to call its home.  The walls close in, tempers rise, and children bounce off the walls.  And you want to be anywhere else.  But going elsewhere always costs money.  The money you didn’t have enough of to begin with. 

But, like every other challenge in life, your circumstances become your reality.  And you just…deal.  We honestly forgot what it was like to have space.  To have room to organize things in a logical and accessible way.  To not be surrounded every minute of every day with everything we owned.  Yes, we were definitely looking forward to my husband graduating nursing school so that we could move.  But I know we didn’t really grasp just how much stress our tiny house was contributing to our lives. 

Until a week ago.  A week ago, we finished remodeling work on my father’s home and moved in.  And it was…heaven.  Everything has a place.  Unsightly things are all tucked away.  And I know where everything is.  Countertops are clear.  The floors are safe to traverse.  My children are basking in the joy of their own spaces.  It’s by no means a large house.  Just a simple three bedroom, two bath home with an open, combined kitchen/dining/living room.  But we have big closets and ample storage.  And we can now actually invite people over to visit.  There is room for them to sit down.  We feel like we can breathe again.  And I am just now realizing how very little air we really had just a couple of weeks ago. 

This house my dad left me is a blessing in so many ways –which is so messed up when I really think about how I got it.  Of course, I know it is what he wanted.  Every parent hopes to leave something to their children.  I just have such mixed feelings sometimes about enjoying it.  But I tell myself that is just likely part of my grieving process and try to enjoy it anyway.  Daddy was a practical man, and he would tell me wallowing in guilt won’t help anything.  I’m trying to keep that in mind.  I’m trying to focus instead on this blessing and the relief it provides to my already over-stressed family.  And I’m mostly just smiling about the obvious delight my children are taking in their new home.  They’re happy. 

So I guess the only thing for me to do is to try to be happy as well.  For I really do believe that happiness is mostly a choice.  But, like every choice, the battle between head and heart is a hard one, now isn’t it?

Whereupon Callum Demonstrates His Problem-Solving Skills: A Photo Essay

Problem solving is one of those things therapist-types evaluate when working with autistic children.  Which is why I was all sorts of amused last night at Callum’s antics attempting to wedge himself into the space in the new coffee table.  I’d say he gave it a good effort, wouldn’t you?

I apologize for the poor quality of the pictures and for not dressing him up first.  But, sometimes one has to seize the moment when it arrives.  🙂

A Room of His Own

The pirate knobs I put on Callum’s captain’s bed drawers.

Earlier this summer, when it was decided that we would move out of our very small home into my father’s (which I inherited following his death in May), I began making plans to decorate Bronwyn and Callum’s bedrooms.  They had been crammed into one tiny bedroom together — which was still pink.  Time and toddlers had wreaked havoc with their room, and it was covered in carpet stains, crayon murals, and frequently broken furniture.  All of their toys, a crib, and a bed – all crammed into one tiny space – made for chaos.  And I was simply too overwhelmed by the hectic pace of working full-time and ferrying Callum to six therapy appointments a week.  Stress leads to chaos and chaos to stress in an endless repeating cycle.

So I’ll admit this mama’s heart was cheered by the thought of creating two beautiful rooms for my babies.  I wanted my little girl to feel like a princess.  And I wanted the opportunity to finally prepare a charming space for a little boy — rather than simply move his crib into his sister’s room.  I started with Bronwyn’s room – picking a lavender and pink butterfly theme.  Then I got to brainstorming Callum’s room.

At some point during my chattering about decor ideas, a couple of people said to me, “Well, Callum won’t really care about his room.”  Which, though that sounds somewhat insensitive, there is a degree of truth to that.  Callum doesn’t care one bit about puppies, undersea, or dinosaur themes.  But the statement and its accompanying reality stung a bit.  It wasn’t meant to hurt.  I think they were just concerned I’d be disappointed if he didn’t react to the room positively (or at all).

But I already knew I wouldn’t get a typical little boy’s reaction.  For my sweet little man isn’t at all typical.  What I also knew was that it didn’t matter to me one bit.  I wanted to give him a beautiful space.  Spacious.  Colorful.  Everything that any little boy deserves.  I can’t give him group sports, an interest in Lincoln logs, or friends.  Those are things he can’t access right now.  Maybe not ever.  Time will tell.  But I could give him a beautiful room.

Virginia Woolf once stated that a woman must have “a room of her own if she is to write fiction”.  No, Woolf wasn’t referring to autistic little boys in her feminist essay on women and fiction.  But her belief that a person must have a personal space in order to be able to grow and create is equally true for all souls.  Perhaps not a literal space, such as a room.  But time to oneself in a place peaceful to the individual.  A place in which one wants to be.

So, I set about giving Callum his place to be.  We chose a pirate theme in deep red, tan, black, and gold.  Found an adorable little bedding set and the accompanying drapes, etc.  A friend traded me her little girl’s captain’s bed for an extra queen we had.  And we painted the drawers the different colors of his bedding and set them off with little pirate knobs I found on eBay.  A net, a ship, some pirate decor, and a big plush shaggy pile red rug for him to roll around on in sensory bliss.

No, he didn’t give us the joyous reaction that his sister did — at first.  He needed to take it all in.  But, within just a few minutes, he began flapping a bit.  And within an hour he was gleefully bouncing on his new bed.  (Yes, I know I’m a terrible mother.  Don’t write me.)  He found his favorite helicopter — and the attached string he likes to whip about.  And – wait for it – he has peacefully slept (and stayed) in his new big boy bed every night.  All night long.

Mama and daddy slept all night long too.

And so my little boy now has a room of his own.  No, he doesn’t care about pirates.  But he knows this is his room.  A room in which he can grow, dream, and wonder.   To flap, stim, and – yes -bounce on the bed.  A place to go when ordered by his 5 year-old big sister to get out of her room.  He likes it.  He’s happy.

And that is the root of every prayer in every mother’s heart, now isn’t it?

Dear Well-Meaning Individual: So You Know An Autistic Child, Huh?

They’re just like snowflakes; no two are alike.

Disclaimer:  I am not a scientist.  These are my own views, based upon my own research and perceptions.  The analogy I discuss below is one I shared with a dear friend of mine – who happens to be a doctor – and she thought it was a good one.  This is merely my way of attempting to convey the complexity of autism to lay persons.  If you want science, there are far more qualified persons than me to consult.  The Thinking Person’s Guide to Autism is a great place to start.  Those ladies are way smarter than me and speak the language of science.  And The Autism Science Foundation won’t lead you astray. 

 The other night, an individual (I’ll allow to remain nameless) called to tell me all about how she met a woman with a grown autistic son who was doing so well that he is able to drive to the grocery store.  She thought that perhaps I might want to meet said woman and see if the woman might have any “tips” or advice to offer me.  It was obvious to me that she thinks my son hasn’t made sufficient progress (him being three, not toilet trained, and using just a few words) and that I could use some help.  I ask for help frequently from parents of other autistic kids, but I resented the implication from this person that this other mother was the “success story” I could emulate – if only I were willing. 

Being of the sort who tries to articulate my thoughts, I attempted to explain why I wasn’t interested in all of her recent -and frequent -suggestions.  I tried to convey to her how many suggestions, cures, and treatments people have pitched to me.  I tried to explain why we decided to end biomedical treatment.  (It wasn’t working, and my views of my son’s autism and autism in general have changed.)  I tried to tell her that I have reached a point where – though I do believe in the benefits and necessity of speech, OT, and PT and do research other promising and tested new therapies – I have accepted that Callum is mostly going to be who he is already wired to be.  And that he is simply too young to assess how his individual brain wiring is going to affect his future.  It’s trite, but – in the end – time will tell.

All I got on the other end of the line was…silence.  The unmistakable indictment in silence.  I grew frustrated and began babbling about how I wasn’t really getting across what I meant.  Eventually, both of us tired of the awkward conversation and hung up.  I walked away unsettled.  Defensive.  Wanting to cry.  Knowing exactly what she was thinking.  She’s given up on her child.  She’s not going to try to keep helping him.  She’s a terrible mother, and he’ll never talk or have a normal life because of her. 

I’ve seen it in her eyes the few times I’ve seen her since then.  And, despite still believing what I said, I am haunted by her disapproval and my own self-doubt. 

There is a saying in the autism world – “If you’ve met a child with autism, you’ve met one child with autism.”  On the surface, it’s meaning is obvious.  Of course every child is different, right?  Most people would nod their heads emphatically at that statement — autism or no. 

But that statement means so much more than that. 

What everyday people who don’t deal with autism in their everyday lives think about autism, they think about it much like diseases of the body.  Diabetes.  Coronary Artery Disease.  Lupus.  Conditions that can be tested for definitively and carry a consistent course of treatment.  There are causes that can be identified, and symptoms that can be controlled via medications. 

But what everyday people do not understand about autism is that those who have it aren’t at all like those who have specific physical diseases.  There isn’t a typical progression of symptoms leading to the worst case scenario.  Finding the cause of autism is comparable to finding the cause of cancer.  Likewise, finding a “treatment” for it is equally daunting.  Why?  Because there is no such thing as plain old cancer.  Cancer is a vast array of diseases with a vast array of prognoses.  Just because you’ve been diagnosed with cancer – it does not mean that your chances of survival are the same as your neighbor’s.  Thyroid cancer is a heck of a lot better news than pancreatic cancer.  Ovarian much more devastating than minor skin cancer.  And those cancers still are comprised of different types.  Yet, we call them all cancer, right? 

Autism is just like that.  But it, like cancer, cannot be nailed down in terms of cause or even treatment.  A breast cancer victim will not be cured by removal of her prostate, now will she?  And the cellular events leading to her cancer are likely very different from the causes of the prostate cancer patient’s. 

What I’m trying to say is autism is not really one disorder.  That’s why its called autism spectrum disorder.  It is a description of a variety of similar traits — of highly divergent degrees of severity.  Some children with autism aren’t impacted with speech difficulties.  And some children will never speak.  Some will excel academically and earn graduate degrees.  Some will never learn to read.  Some autistic adults grow up to marry and have children.  Some cannot tolerate the touch of another human being.  They are not the same people, and they do not have the same disorder.  It just carries the same umbrella term.  What created the differences in the brain wiring of one individual on the spectrum did not necessarily create the differences in another.  The reason there isn’t a definitive “cause” of autism is because it likely doesn’t exist.  There are genetic links.  There are suggestions of environmental factors.  Prematurity increases risk.  Some forms may be merely a natural variation in the human spectrum.  The causes appear to be many.  Therefore, the effects are many as well.  Which means that what will help one autistic person isn’t necessarily going to help another.  And some on the spectrum don’t need our “help” at all.

It is not the fault of their parents for what they did or did not do in terms of doctors chosen or treatments attempted.  One child’s autism is not another’s.  No more than one person’s cancer is another’s.  So calling up the parents of an autistic child and telling them all about what “fixed” another person’s child or comparing autistic children to one another is an exercise in futility – and cruelty.  Would you call a lung cancer patient and berate her that she isn’t doing as well as your neighbor who had that spot of skin cancer removed from her nose?  I think not.  But people do it all the time to us.

Our children are individuals with individual differences.  And assuming that a severely autistic child will do just as well as a mildly autistic/Asperger’s child using the same interventions is a cruel misconception.  Why?  Because it automatically points a finger toward his parents, his school, his therapists.  And it suggests that the child may not have fulfilled his own potential.   This is not to say that parents should just give up and allow nature to take its course.  Yes, there are interventions that can greatly help children across the autism spectrum.  But I believe that we must consider the starting point of each child before setting our goals.  If goals are reached, then you set another one.  Sometimes amazing things happen that way and children seemingly without hope reach unpredicted milestones.  But the harsh reality is that some autistic children’s wiring is so severely impacted that they will never function independently.  And it isn’t pessimistic; it’s realistic. It is accepting the child for who he is while working to help him be the best him he can be. 

So, friends and family, acquaintances and strangers, I respectfully ask that you back off.  You might not know what you’re talking about.  You mean well, we know.  But we already have our hands full trying to maximize the potential for happiness – in whatever form it comes – in our children.  We don’t need amateur neurologists theorizing what we could be doing differently.  It’s insulting.  It’s frustrating.  It hurts.  If you want to help, how about calling and saying, “I know you’ve got your hands full.  Do you have a project around the house you think I could help with for an hour or two?  Do you need an hour or two to yourself?  Do you need me to run an errand?  Or take Susie to dance class, etc.?” 

That’s the kind help we really need.