Tag Archives: siblings

On Shortcomings and Attention Equity: Hard Truths in Special Needs Parenting

14628103_10208949304104722_2135956070_nThere’s nothing quite like parenting to make us confront our shortcomings.

Mr. Flappiness and Bronwyn are so very alike. They both have diagnosed ADHD – the kind that puts the H in ADHD, if you know what I mean. But they have all the other delightful traits that those with ADHD often have – the creativity, quick thinking, etc. that those of us who love them adore.

But because they are so very alike in temperament, interests, and sense of humor, in addition to the ADHD, they are close. They get a kick out of each other. Bronwyn often seems to prefer him to me, me being a little too low-key to entertain her some days. They’re two peas in a pod, my baby girl and her daddy.

Sometimes, I’m envious of her relationship with him — although I understand it. If ever a woman were a daddy’s girl, it’s me. I wish the introvert and lover of air conditioning in me were less so. She’s beautiful to me, but we’re quite different personalities. Since I share a temperament and personality with Callum, I know some things just are.

But because I love her so, sometimes I envy their closeness and worry – deep in the heart of the mother who raises both a typical AND a special needs child.  I both fear and mourn the certainty there is not enough of me with regard to my daughter. Her needs are great too. The problem is that Callum’s – who is autistic, high needs – are so very immediate and not delayable. 

Mr. Flappiness is on the road often now, and it’s taking its toll.  Big changes for all of us. Bronwyn is taking it hardest.  This morning, she woke up and came in to snuggle with me. She talked about how much she misses daddy and said, “The truth is, Mom, daddy is just more FUN than you.” Ouch.  

I acknowledged the difficulty she’s having, and I told her I’m sorry I’m not as much of her kind of fun (theme parks, producing videos, etc.) as daddy. And my sweet girl put her arms around me and then clarified, “Mom, daddy is more fun than you.  But you’re more loving.  I go to daddy for fun and you for love. That’s what I love about you best.”

Well, hell.  That’s for sure a conversation I’ll replay in my head obsessively as I continue raising these two.  But the combination of those big beautiful blue eyes – my grandmother’s – and those words?  Deep breaths kind of love right there.  Words that felt a little like absolution just when I’m sure I’m failing.  

She comes to me for love.

I may be doing lots of things wrong.  But I hope that statement counts. I have to be doing something right – right?

Pranking Autistic Pre-schoolers and Other Ill-Advised Pursuits

Bronwyn, my 5 year-old, has discovered YouTube.  For the most part, this is a good thing.  She watches kids’ music videos, children’s stories, and monster makeup tutorials made by other kids.  She enjoys these “tatorials” so much that I can hear her “filming” her own videos, speaking directly to her audience as she discusses how to do such things as washing one’s own hair, counting to 100 by 5’s, and so forth.  It’s cute, but I fear she is going to ask me for her own channel soon.  No, she won’t be getting one.

Recently, she asked if she could watch some little girl “pranking” her family members.  The pranks were innocent enough, so I allowed it.  Big mistake.  Now she is stalking our home, lying in wait for some way to prank us all.  (You should have seen her delight when her daddy discovered the salt in his morning cup of coffee.)  Really, it’s been kind of cute watching her tap into her imagination, although we did have to have a discussion about funny vs. mean pranks. 

You probably have guessed where this is going.  Yes, my little stinker wants Callum to join in the fun.  So I explained to her that her little brother probably wasn’t going to appreciate being pranked and that we should all refrain from doing so.  Being a little Choleric, she of course ignored my advice and set about pranking Callum.  It didn’t go well.  He thought it was funny when she jumped out at him from behind a door, but that’s where the hilarity ended.  Hiding his candy, letting the water out of his bathtub, and touching ice to the back of his neck were all spectacular disappointments as well.  (Which earned her repeated trips to time out in her room.)  So I’m going to go out on a limb here and state emphatically that playing practical jokes on autistic preschoolers is ill-advised.  Somebody alert the media. 

I must say that I was impressed with Callum’s handling of it all.  He may not have much language, but he has communication.  And, boy, did he communicate.  He yelled, growled his displeasure, and – understandably for any long-suffering little brother – gave her a little shove.  A clear case of self-defense, so he escaped prosecution. 

True Story – “How a Hog Pen Saved Me from Death”

As for my daughter’s love of practical jokes, I blame my husband.  She inherited it from him – along with his nose, a suspected case of ADHD, and a decidedly grumpy morning demeanor.  (It has been suggested to me by her teachers that I have her tested for gifted.   Let’s just attribute her staggering intellect to me, shall we?)  I’m more like Callum.  I don’t like surprises.  I have sensory issues.  And don’t even think about messing with my food.  Nope, I don’t like being on the receiving end of a practical joke at all, though I confess to having orchestrated a few really good ones.  (The best one nearly got me killed.)

But you know what I love?  The fact that my daughter loves her little brother so much that she constantly tries to find ways to entertain him.  Her solutions – at 5 years-old – leave much to be desired.  But her little spirit is willing, and – for the most part – so is his. 

How I look forward to seeing the trouble these little monsters get into together.  J


Siblings are the people we practice on, the people who teach us about fairness and cooperation and kindness and caring, quite often the hard way.

– Pamela Dugdale




Let’s Hear It For the Boy!

Progress in developmentally disabled children is a funny thing.  A lot like getting fat really — a subject I have enough experience with in which to opine.  You don’t see weight gain in terms of ounces.  Instead, it steadily creeps up on you.  You aren’t sure whether the pants you just put on are really tighter or if they just shrank in the dryer.  It could be that you are retaining water, after all.  But the ounces keep building up until one day you can actually see it.  Loved ones, seeing you every day, may or may  not notice.  But the nurse at the doctor’s office dutifully records it on her little chart.  And that obnoxious co-worker you make it a habit to avoid keeps suggesting you join everyone for Zumba. (Which, in terms of tolerable behavior, is the outside of enough really.)

Developmental changes are just like that.  You keep looking for miracles.  Sudden “A ha!” moments of clarity or skill.   You pray for your Helen Keller at the water pump kind of moment, but it’s not what you get.  The reality is more like this:

Parent 1: “Did he just _______?”

Parent 2:  “I don’t know.  It sounded like it, but it could have been _________.”

Parent 1: “Only this time he did _______.”

Parent 2:  “Yeah, I noticed that too.  Let’s see if he’ll do/say it again.”

Parent 1:  “He’s not paying attention anymore.”

Both:   Shrug shoulders…

Life with Callum has been like this lately.  We see little bits of progress, then question them, before ultimately deciding that – yeah- things are happening in terms of his receptive language, efforts to communicate consistently, social interaction, joint attention, motor skills, etc.  It’s subtle, but it’s there.  And, in the reverse of weight gain, we are actually thrilled to pieces at the number of people who are beginning to notice the changes as well.  

A few weeks ago, Callum began taking us by the hand when he needed a diaper change.  If we notice the need first, all we have to say is, “Come on, Callum, let’s go change your pants.”  And he reaches out with his little hand and walks with us to the changing table.  What impressed me even more happened a little after that.  He had a little medical problem  (for the sake of brevity, I won’t elaborate) requiring frequent changes and some topical ointment.  Each time, it was uncomfortable.  In the past, he would fight, not understanding mama was trying to make it better.  But, suddenly, he began communicating to me the need for a change – even though it hurt enough to make him fuss and cry a bit.  Whether this is receptive language or cause and effect or whatever one wants to call it, I know it is progress.

He has also begun to seek out more eye contact – for interaction rather than food.  He also appears, with his very few words, to be having a bit of an argument with us when he can’t have something.  Not screaming, but attempting to communicate.  He has started interacting with his sister a bit more, giggling with her on occasion and tolerating her pulling him after her to play a role in something she wants.  He doesn’t understand her play at all, but he is handling her efforts admirably.  He seems to be understanding the concept of waiting a bit for something he wants.  And, in the most heart-warming development of all, has begun cuddling with his big sister.  She, 5, keeps forcing her affections on him and wanting to hold him while watching TV.  And he –lets her and even seems to enjoy it!

Yes, progress is microscopic — until suddenly there is enough to see and celebrate.  And it’s great when it happens.

But joy?  Now that’s a choice.  You can either choose to see how far you have to go or you can choose to see how far you’ve come.  This is a journey in which you shouldn’t always keep your eyes on the road ahead.  Otherwise, you’ll miss out on enjoying the charming little companion beside you.

Siblings, Stress, and Love: A Big Sister’s View of Autism

This is a guest post by Leah Kelley of 30 Days of Autism.  Leah is a K-12 Special Needs Resource Teacher and blogs about her experiences both as a teacher and as the parent of a child on the spectrum.  I found Leah after reading her wonderful post Treasures I Found at the Thrift Shop: Autism and Understanding.  Leah also presents on issues regarding autism and literacy and has been published in reading/language educational journals.  I think Leah is a fantastic writer and advocate for our community, and I am so pleased to welcome her to Flappiness Is.  Today’s post specifically addresses a topic that has been on my mind since viewing Alicia Arenas’ TED Talk “Recognizing Glass Children” – a powerful talk about the hidden pain of siblings of special needs children.  Having a neurotypical child as well as a child with ASD, I have been giving this subject a lot of thought recently.  In this post, Leah shares her and her daughter’s thoughts on the sibling experience.  Thanks, Leah!

I have a beautiful daughter who will be 18 next week. Nika was almost 6 when H was born. He was like having a real baby doll and she was just awesome with him. Nika was precocious and very social: she talked early, walked early, and she was and is very musical, witty, articulate, academically bright, and strong-willed.

Tonight before dinner H was showing Nika the butterfly knife that he created out of Meccano, and his Villagio (our name for Value Village) leather jacket. (Lately H is working to emulate Mutt Williams – son of Indiana Jones from The Kingdom of the Crystal Skull.)

Nika said he looked like a small biker. Then she added, “Somebody once asked me if there was ever a Zombie Apocalypse what would you want to have with you? I replied with: A convoy of armored trucks and my little brother, because when all else fails he will find a way to make something useful out of the rubble and remains of civilization.

The two of them then got into a hilarious conversation about how Nika would be the driver because H’s feet won’t reach the pedals, and laid out contingency plans, roles, and responsibilities in case of an actual Zombie Apocalypse.

This is a good place to be… and my policy is… when the going is good, sit back and enjoy, because it will get tricky again soon enough. I don’t need to go looking for tricky or troublesome – it will find its way to my door. I love this interchange because it is representative of the amazing relationship that is developing between my children. H adores his sister, and he misses her deeply and terribly when she is not around, and Nika is coming to a place where she is able to really see and admire certain qualities in her brother, and I see in her some budding advocacy tendencies. I like that!

Some of the best advise we had when H was diagnosed with autism was that it was important to understand that a sibling goes through the same process of grief that the parents do: shock, denial, anger and finally acceptance. I suspect that neurotypical siblings (NT sibs) can also feel guilt that they do not face the challenges of their sibling and/or that they have no right to complain or feel life is difficult. This is huge pressure for a child.

The lives of  NT children can be deeply affected as the entire family system works to accommodate the complicated needs their sibling with autism. It can be difficult for the NT sibling to express any negative thoughts without feeling like they might be terrible or not worthy of love. However, the feeling of being pushed aside is understandable and at times likely justified, and parents need to be open to the expression of this so they do not drive these feelings inward in an unhealthy manner.  It is understandable that an NT sibling might, at times, feel resentful. Life just got a whole lot more complicated.

It can be hard to be the sibling of a child with autism. It can be hard to have to tone things down and keep a calmness to routines because your mom is constantly watching and saying things like, “OK now… that was funny, but let’s not rev H up.” When you are excitable and full of life and fun, it is difficult to have to rein in impulse so that your parents are not stressed by your brother’s potential melt-down.

Painted by Nika

There have been times when H has said insensitive things and really hurt Nika’s feelings. There was an occasional time when he hit her, and many times when he has irritated her with his persistent talk about his present topic of interest. Usually – these have not coincided with Nika’s interests.

It can be hard to have the sensitivity to know that your parents are anxious and worried and that they have to focus so much time and attention to the newcomer. It can be hard not to want to set him up and see his wheels spin, and bug him to get back at him a bit for what you know your family is sacrificing… for what you may be sacrificing.

Nika was willing to help me with this post, but when I asked what she would like to share she said, “I don’t know… I don’t really think about it anymore. I am just so used to it.”

So I decided to interview her:

What is your earliest memory of your brother?

Laying at the cabin and reading him Little Rabbit’s Loose Tooth or some other book.

What do you remember feeling about him being different?

I remember that you always seemed busy with him and I felt pushed off to the side. You were busy taking him to tests or staying up late working on funding stuff. Sometimes you’d be so tired from dealing with him that when we got time to be alone together you would fall asleep. I understood but it was still frustrating.

What are your hopes for H as you see him get older?

I hope that he can live a normal life just like anyone else and that he can take care of himself and be on his own and be his own person.

What role do you think you might play in his world?

To be there for him if he ever needs anything. To be there to listen to him and give him advise. Just to be there when ever he needs me to do what ever I can.

What is your favourite thing about your brother?

He is fun to be around – It is always an adventure. He is just chill and laid back. We can hang out together and it is easy. He may not have advise for me but I can talk to him and he listens.

What has been a hard thing to get used to?

Just that he is slower to learn and respond and sometimes I forget that.

What makes you mad?

I don’t know… just when sometimes he seems to not be listening and it feels like it is on purpose, but it might be just that he didn’t hear me or it didn’t register.

Is there anything H has taught you?

He has taught me how to be strong, because I know that school is rough for him and he has always made it through and he seems to stay true to himself.

What advise would you give to siblings of a child with autism?

Tell the other child to be understanding and that it is not always easy. It is strange that no matter how mad you can be at your brother or sister – but if someone bothers them you are right up there to defend them. You may feel it might be easier to have a sibling that is so-called typical, but you love them and they are still your brother or sister either way and you love them no matter what they struggle with. I believe that having a brother with autism has made me a stronger and more rounded person. This has given me a better understanding of the many types of people out in the world that may seem like everyone else but may be struggling with challenges that we can’t see. So having a sibling that has an invisible disability has made me realize the truth and relevance behind the statement “you can’t judge a book by its cover”

Nika and H

You can cry – I might too…

My little brother is my best friend and even though it is sometimes a struggle I would not change him for any other brother or sister in the world. I accept him for who he is and I just hope that some day the world can do the same.

Thank you Nika, for sharing your thoughts, memories and insights. Love you honey!

If you enjoyed this post by Leah Kelley, you might also like:

Tic Tacs: A Light-hearted View of Autism Intervention

Coping With Anxiety: The Power and Message of a Parent’s Response

Mom, Tell Me What I Did Wrong: Autism and Social Development

Video Worth Sharing: “Recognizing Glass Children” by Alicia Arenas

(You may have noticed that there is no actual video on this post.  That’s because I’m too cheap to pay the $60 my host requires for me to imbed it on my blog.  Don’t get me wrong.  I love WordPress.com.  They host hundreds of thousands of blogs for free, so you really can’t blame them for trying to make a little money.  But I’m too cheap, so you’ll have to actually reach for the mouse or trackpad and click.)  

Click to watch Alicia Arenas' TED Talk.

If you are the parent of both a special needs child AND a typical child, you need to watch this amazing TED Talk by Alicia Arenas – “Recognizing Glass Children”.  If you are a teacher or know a family with both typical and special needs kids, you need to watch it as well.  This is powerful.  It is about the psychology of being the sibling of a child with special needs and how it is in that sibling’s nature to pretend everything is okay inside – when it is not.  This clip is 20 minutes long, but it might just make a huge difference in the life of a “glass child”.   I’m so glad I saw this while my typical daughter is still so young.

“Yeah, I know what you mean, Mommy. I really like her stories, but most of the time I feel like she is inside four walls of brick and I can walk around and around them but only she has the key to the secret doorway.”

Lucy -(Daughter of Bobbi Sheahan, author of “What I Wish I Knew About Raising a Child with Autism”) upon her mother explaining to her that it sometimes feels as if she has to reach around the autism to get to her younger daughter

From Autism Speaks Official Blog: A Sister’s Response to My “Silencing Ourselves” Post

A Sister’s Response…  Here’s a response to my post “Silencing Ourselves: A Plea for Civility to the ASD Community” from a sister’s point of view.  This is a guest post on the Autism Speaks official blog by Ali Dyer, a Social Media Coordinator for Autism Speaks.

This includes a downloadable “Sibling Support Tool Kit” to help kids aged 6-12 who have a sibling with autism.  It is a guide to help parents assist siblings with their feelings about a brother or sister’s diagnosis.