Tag Archives: special needs

A Little Girl Laughed Today: On Special Needs Feel-Good Shares That Don’t Feel So Good

download (4)Today, I saw a scene that would have stopped you in your tracks, if only you knew what preceded it.  I witnessed a moment I wouldn’t have imagined in darker days for this girl.  I won’t tell you how I know her story, because I know her parents aren’t looking to make her famous. There were no photographs.

What matters is what happened.  And what happened stole my breath.  Because this girl has been picked on — badly.  She has suffered enormously with triggers causing behaviors that are alienating and confusing to others.  She has no friends.  

But today was amazing.  Today, some kids who took the time to get to know her a little – kids who have no knowledge of autism, but don’t really require it because they are innately kind and cheerful – made her laugh.  And watching her laugh made them laugh and smile and laugh some more.  They were three kids just cracking up laughing over something that was pretty funny in a slapstick kind of way.  She laughed for a long time.

It was beautiful.  Not in that “How sweet and heroic of him to take the autistic girl to the prom” kind of viral sweetness that draws you in, despite the lingering questions over what kind of romantic hopes the girl might have on Saturday morning.  Not in the way that whispers, “See what a wonderful person I am? I’m kind to someone you’d never expect.   But I did this amazing thing.  Let’s tell everyone about it and make her one day possibly reflect on how she is so different that only one selfless person wanted her company.” 

I cringe over these stories.  I do think that what many of these kids, celebrities, and strangers have done has been well-intentioned.   It’s the way we share it that’s bothering me.  It’s the way we gush over it and make special needs people famous for a day — because some person did what others would have considered unthinkable.  My problem isn’t the action taken.  It’s the echoes left behind after we’ve marveled so publicly.  The questions the girl may have about her own worth as a person — if the whole world went crazy over somebody being kind to her.  

A little girl laughed today.  I don’t have a video to share of it.  But I can describe it for you.  An autistic girl who rarely smiled and interacted with others – because of cruelty and the nature of her disability – laughed with other children today.  A child who had need of friendship, shared interests, fun, and laughter like every other child— but who was plagued by sensory overload and a lack of awareness and acceptance – laughed with other children.  Giggled and snorted even.  How I wish I could’ve recorded it – not for you nice folks, but for those who love her.  They would’ve cherished it.  

And she laughed because some nice kids took a genuine interest in her.  It wasn’t to make a point or get praise; they just think she’s interesting and wanted her company.  And she thought they were worth knowing and laughing with.  It’s a triumph for her.  I’m the only person who saw it, and that’s perfectly okay with me.  Because they know it, and she’ll remember it.  She made friends.  They were happy for her and for themselves.  And that means she’ll likely try it again.  I sure hope so.  I hope that she laughs a lot more in her life.

Mostly, I hope that her friendship skills continue to grow and that she makes the kinds of friends who will be nurturing and a pleasure to spend time with.  The kind who aren’t looking to make a public statement, but who intend to value her friendship beyond the viral tweets and shares.  I hope that one day nobody sees her as a surprising candidate for prom date — and instead just wave at her as they dance by.  I want her to hear messages that aren’t “Yay!  You’re here! We’re so surprised!” and are instead “Of course, you are here, because you’re one of us, and it’s where you belong.”

These are my hopes for her.  And my hopes for my own child.  The circumstances and events may change, but I hope for the same thing for all the kids not yet on the playground.  

A little girl laughed today — and took a few steps closer to those in her world.  Every day, I pray that others will meet her halfway — only without looking over their shoulders for the camera.

Because I don’t ever want her to see that camera and wonder why it’s there.     

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

7 Tips for Being a Friend to a Special-Needs Parent

Today, I’m honored to be guest posting for WhattoExpect.com.  

Three years ago, I gave birth to a beautiful baby boy we named Callum. He was, and continues to be, a joy to us. But, shortly before he turned a year old, I began to notice the telltale signs of autism. We soon were thrown into the world of developmental therapies, specialists, and ESE. It was a frightening time of worry for his future and adjusting to a reality not quite like the one we had envisioned. And, though we adore him and wouldn’t trade him for the world, his needs have certainly affected every part of our lives. One of the things I wouldn’t have expected it to affect was my friendships. But it did. Some of the people I expected to be there weren’t. And some people I never expected to be there were. Often, I have noticed a hesitation or awkwardness on the part of friends who just don’t know what to say or do. I know they care. And I know they mean well. They are, quite simply, at a loss.

Here is what I would like to say to them and others like them, if they were to ask how to be a friend to a special-needs parent:  Continue Reading…

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.

Things I Learned On I-75

 Disclaimer:  This is about my particular child and my own experiences raising a child with autism.  I am not attempting to represent the autism parenting community with this post.  As the saying goes, “It’s a spectrum.”  Yes, I already know that our situation is far better than some.  And, yes, I know that our situation is less encouraging than others.  Which is true about most things in life, I suppose. 

Last month, we took our little family of four on our first road trip together to visit family.  It’s an eight-hour drive, and –with a 3 and 4-year-old – we simply weren’t willing to do it any earlier.  But, we loaded up the car, offered a quick ceremonial dance and sacrificial offering to the temper tantrum gods, and headed out.  I expected the worst.  What I got, however, were revelations I didn’t expect to find on Interstate 75:

1.  My son can tolerate much more than I gave him credit for.  He sat, happy as the proverbial clam, and just…enjoyed the ride, man – enjoyed the ride.  If I turned and caught his eye or called his name, he’d just turn and smile…all the way to his eyes.  I swear I fell even deeper in love with my child during those hours on the road.  He is a likable little dude.  He handled museums, crowds, unfamiliar restaurants, my mother’s annoying Jack Russell terrier, hotel rooms, and a rather amusing and startling exploding bath in a Jacuzzi tub.  Knowing how many of our kids in the ASD community struggle in being overwhelmed with sensory issues, I recognize his tolerance of the world around him as one of his strengths.  And, for his sake, I’m so grateful for it.

2.  I think my NT daughter is acting out for attention.  Having viewed “Glass Children” soon after this trip, I worry even more for her.  I really look forward to the end of what I deem “The Great Sacrifice” — making the decision to live on one teacher’s salary while sending my husband back to school full-time.  When you’ve gotten used to a bigger house and cars that consistently run, it hurts more to downsize – especially when raising very young children.  Good times are coming again one day, but it’s not fun.  I dream of being able to decorate a room for just her.  All lavender and white with pops of sunny orange and pink  – like she loves.  I look forward to being able to enroll her in more activities, take her to a concert, or introduce her to the joys of Build a Bear.  Yes, she’ll be just fine simply being loved, but it will do this mama’s heart good to just take her to do something fun without second thoughts.  She needs our attention all the same as her brother.  I so want her to feel we did right by her.

3.  Although Callum certainly has sensory issues – the sensory seeking variety that will inevitably cause much social awkwardness – we are also terribly fortunate in the seemingly random distribution of autistic severity among spectrum kids.  Yeah, it’s autism.  But one person’s autism parenting reality is truly not another’s.  Our boy loves to cuddle.  He gives kisses if requested.  He has never bitten or hit us – though times can change, I know.  He loves to laugh.  And, though by no means even approaching his correct developmental age, he is curious what we are doing.  He usually comes if we call him and seeks us out when he hasn’t seen us for a few minutes.  And he successfully nonverbally communicates what he wants –that he wants to play tickle and get tossed around on the bed or that he wants juice, not milk.  Most of all, though he has never said, “I love you”, he makes joyful eye contact with us that says it just as clearly.  Yes, I want even more for him.  But I also know that in him we have an abundance of joy and rewarding interactions that parents of more severely affected children often miss out on.

4.  People are beginning to become hesitant in how to interact with my child.  I see the concern on the waitresses’ faces when he won’t talk back to them.  I see the dawning realization on the faces of other parents who take a second look now at his flapping and odd vocalizations.  I understand the awkwardness in family and friends who attempt to engage him and are ignored.

5.  Everyone needs time away – including the little ones.  They need a change of scenery too.  Bronwyn and Callum had a ball jumping all over the hotel bed, playing hide and seek in new spaces, and running up and down the long hallways and the staircase of the hotel.  Our daughter learned so much about time, distance, geography, and more.  Vacations aren’t just an indulgence.

6.  My husband is a great daddy.  Of course, I knew this already.  But time and proximity have a way of making you less aware of what you already know.  He is equally involved in everything.  He goes to doctor appointments, attends therapy, gets up in the middle of the night, checks school folders, and accepts our son for who he is.  No parent is perfect, but his children are very aware of how much their daddy loves them.  And I know I’m not in this journey alone.

7.  I’m wound so tight.  I used to love to plan day trips with friends, craft and decorate, and belt out classic rock and country tunes at the top of my lungs in the car. (Being a southern girl, I can sing every line of Bocephus’ greatest hits.)  Yet, prior to this trip, I hadn’t done so in years.  I am no longer capable of sleeping in.  And I can’t return to sleep if I wake up.  I become instantly alert and worries play like a broken record in my head.  Yep, I’m tense alright.  Clearly, I need more carefree fun and laughter.  Infrequent moments of hilarity affect me more now –precisely because they are so rare.  Yet ordering yourself to have fun is a little like trying to tickle yourself, isn’t it?

8.  As the song says, we have a long way to go and a short time to get there.  The only way to do it is to take it one mile at a time.  To look back at our progress , while keeping our eyes on the road.  To, while certainly using the road maps of those who have gone before us, remain aware of sudden detours and unexpected holdups.

And to sing as loudly and as enthusiastically as we are able while on the way.

If you enjoyed this post, you might also like:  “Why I Won’t Be Getting Mother of the Year: Layers of Understanding”