Why I Let My Daughter Rearrange the Chairs in the Waiting Room

2k
2k

chairs Addie was on her third artistic chair arrangement. Chair arranging is a specialty of sorts. The most important element is the purple chair. There must be purple chair(s). Plural. We hit the purple-jackpot this fine Friday. When the elevator opened, the heavens sang and the trumpets played and her eyes grew wide: “Mommy! Purple!” she declared! Yes. Yes. Purple indeed. A sea of not only adult purple chairs but alas, little people purple chairs in the waiting room. There. Is. A. God.

I checked Addie in and by the time I turned around she had Houdini’d out of the stroller and was already on task. Let the art begin. She started to do the sign for “more.” Addie is all words and doesn’t need to sign anymore. She is verbal beyond verbal. But when she is excited, nervous, etc., I will see her over-do the sign for “more.” This time, she was totally doing this.

She was very happy with this situation. She began her first arrangement. I sat and watched. Literally I sat back and watched. I didn’t stop her. We were in the waiting room at the Behavioral Doctor at the Children’s Hospital of Philadelphia (CHOP). There weren’t many people there in the waiting room. Addie wasn’t running from me. She wasn’t screaming. She was focused and moving chairs. And I simply let her.

Many people would have a problem with this. As a matter of fact, I took a picture of her work of art and someone that I texted it to actually did have a problem with it. I’m sure a lot of folks have a lot of thoughts about what I do and don’t do. When I received the doubting text back that read, “Are you sure you want her to do that?” I put my phone away and wasn’t mad at the person. I was mad at myself for sharing.

Addie was working on masterpiece #3 when a doctor called another family back. The mom gathered her two children, and Addie thought she was now a part of this group so she followed. I quickly reminded her that she was a part of my group, and as I went to get her, the little boy came up to me and shook my hand and hugged me and started getting very emotional and talking very fast. The mom became very embarrassed and started to apologize. I was so confused — not because of what the boy was doing but what the mom was doing. Why was she apologizing to me? We are at the behavioral doctor’s office. Was she so conditioned to apologize that she forgot? I looked at her bewildered, then softly said, “Hey… stop… we’re in this together… We’re strangers but teammates. It’s all OK. Really. He is totally OK. I am totally OK. Really.” She was still upset, and took him back.

I went back to “Stonehenge: The Purple Chair Edition” to find Addie now crawling through it but only touching the purple parts. I thought, “How clever.” If there is one thing my child is, and she is many things – she is clever. She is a problem solver. She can get what she needs and wants. I am very impressed. When her name is called, her doctor actually comes out to get her. He knows her well. He comes out to find her design. He smiles at her and looks at it and says, “Wow! Quite a project! She is very smart.” We all agree. All three of us clean it up, and the appointment begins.

After the appointment I am frantically chasing my little one all over as she is suddenly on the Tour de France. She is fast. Once I catch her and my breath, I run literally right into the mom I encountered at the very beginning of this appointment. I apologize and pray I didn’t break her nose or any body part. She and I are intact. (Thank you, again, God.) Ironically her son is running away from her, and she lets him. We laugh at this, and then she says to me, “I am so glad I saw you again, I just want you to know that my son is very smart. He is high-functioning. He may even go into a normal classroom and then into kindergarten. He may come out of this. He is really doing so great. He is really smart.”

I couldn’t believe it. All I could do was what I knew best and that was to hug this woman, so I did. I said nothing because I really was speechless. She looked so tired and actually more upset than she did before the appointment. There was so much I wanted to say to her but I couldn’t, so we went our separate ways. We got onto two separate elevators — separate elevators with two bright, smart, adorable children both with bright futures ahead of them. We were both exiting the elevators as mommies who want nothing but the best for our kids… Yet, we both doubt ourselves… we doubt our value in different ways. Neither one of us is right. Neither one of us is wrong. Neither of us has the answers. Neither one of us knows if what we’re doing is right. One of us is frantically running after their child and one of us is watching as their child runs away.

On the car ride home, I think. I press the “Chapter One” button over and over so Addie can hear and watch her favorite part repeatedly on her favorite DVD. Each time I press that button, I press a button in myself that asks the question – “What am I doubting? Why am I letting people doubt me?” I find myself driving and talking to God while I drive. I am asking Him this question.

I get a lot of feedback from people. And by people I mean everyone: friends, family, coworkers and sometimes people I don’t even know. People mean so well — they really do. I have found that people struggle most with my level of acceptance of Addie’s diagnoses. The more comfortable I am with it, talking about it, living it — I have actually found that I have become more isolated. The better she has done, the farther she comes, the more some people struggle with it as well. It’s an odd situation.

Sometimes the feedback is through silence. People I care the most about just stop contacting me. Sometimes people can only text or email me. Sometimes people just fade away. Other times, people constantly challenge and question me… like today with “Stonehenge.” Again, that person meant so well, but I find myself saying:

“What do I do? Am I doing something wrong? Am I wrong for just accepting things as they are today and living in the now?”And by this I don’t mean being impulsive. By “right now” I mean right now. I am working our tushies off in therapy after therapy after therapy. Right now we are going to doctor after doctor to insure she gets everything she needs to succeed. Right now I am making sure she gets all her weekly medications filled and weekly therapies organized on the calendar. Right now we are two months away from meeting her service dog we’ve worked so hard to make a realization. I mean, I really can’t think ahead. I really can’t think behind as far as this situation is concerned. I just want work really hard on the now and at times that means sitting back and watching purple chairs being constructed into Stonehenge. Is Stonehenge that bad?! I mean God… can you help me here? Help me.”

With that, my cell phone goes off: Ding! Since I am driving I can’t look at it. But the noise — Ding! — tells me that I have a message on my Facebook page. When we get home and I am in the driveway I look at my cell phone and would you believe there is a message from my childhood friend and neighbor? She was the one who emailed me while I was driving. It read, “Hey Sam, I was in the area today where we grew up, and I drove past your childhood home – you wouldn’t believe how much it’s changed! I took a picture of it with my cell phone. You’ll barely recognize it except for one thing – the big white rock that you guys always had out front is still there! It never moved! It stayed strong! Love ya!”

1796727_346762405464836_2073412160_o

Oh. My. Well hello, God. I do believe you were sending me a sign. And I do believe I heard you, sir. As a child we had this huge – I mean huge – rock at the end of our driveway. We painted it white, and we could sit on it. My parents hand-painted our last name on it and our house number. It was so big it wasn’t movable. It’s still there.

So maybe that is the point. I am to stay strong. I am to be myself. As Aslan said in “The Lion, The Witch and The Wardrobe,” “You doubt your value; don’t run from who you are.” Some things may change – time, age, houses, places, but our values, what we believe in and who we are, we must remain true to — this includes purple chairs in waiting rooms that very beautifully, to this Mommy, resemble art.

This post originally appeared on Addie’s 4Ever Friend.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

2k
2k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Supermodel With Rare Skin Disease Proves Different is Beautiful

126
126

Chantelle Brown-Young is helping to redefine the face of beauty.

The 20-year-old from Toronto, Canada, has a pigmentation disorder called vitiligo. Vitiligo creates unusual looking patches of white on her skin where melanocytes, or pigment making cells, have been destroyed, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. About one percent of the world’s population suffer from the disease.

.“A lot of people have a story and a background,” Brown-Young said in her America’s Next Top Model audition tape. “But mine is painted on my body.”

Despite her unconventional appearance, Brown-Young decided to pursue a career in modeling and got a big break when she was selected as a contestant for season 21 of America’s Next Top Model. She was encouraged to audition for the show after Tyra Banks saw her Instagram account, according to the New York Post.

Screen-Shot-2014-10-24-at-12.04.43-PM-320x251
Via Winnie Harlow’s Instagram account.

 

However, it wasn’t always so easy for the model to embrace her appearance. She was bullied and picked on as a child for the distinct markings on her skin, she told NBC Today. Kids would call her “cow” or “zebra” and other hurtful names.

The only person that can make you feel that you aren’t beautiful is you.” Brown-Young told the outlet. “You can’t let someone else lower your self-esteem because that’s what it is — self-esteem, you need to first love yourself before you have anybody else love you.”

Check out some of her photos below: 

Screen Shot 2015-08-24 at 11.43.10 AM
Via Winnie Harlow’s Instagram account.
Screen Shot 2015-08-24 at 11.43.57 AM
Via Winnie Harlow’s Instagram account.
Screen Shot 2015-08-24 at 11.44.20 AM
Via Winnie Harlow’s Instagram account.
Screen Shot 2015-08-24 at 11.45.15 AM
Via Winnie Harlow’s Instagram account.

 

To check out more of Chantelle Brown-Young’s unique beauty, visit her Facebook page or follow her on Instagram.

126
126
TOPICS
JOIN THE CONVERSATION

Why I Stopped Trying to Make My Son ‘Typical’

2k
2k

When Morgan was first diagnosed with autism, my husband and I were in “fix it” mode. Our end game was that Morgan would be indistinguishable from other children.

We wanted him to pass for typical. We wanted him to be happy at all costs, as long as those costs were within our scope of reasoning.

We were determined.

I didn’t care that the little voice in the back of my mind screamed this approach was wrong for us. Nope, it didn’t matter. My son’s voice and the atypical way he spoke? That needed to change. I completely neglected to remember that I should be thankful to be hearing words, finally. Those fidgeting and flapping fingers? Those needed to stop. All of the books said so. Typical kids don’t do that.

Scores needed to climb higher. He needed to blend with the other children. He was miserable — so were we. The more I pushed for him to be less of an individual and part of a herd, the more behaviors we saw.

This didn’t last long.

I (I say “I” because my husband traveled a lot in those days, and I was the primary caretaker) wasted time and energy. I didn’t see that this wonderful boy who had been in front of me the entire time was great, just the way he was. He needed support, not to be changed. The only changes that needed to be made were the parenting and teaching methods being applied to him.

I don’t remember when the epiphany occurred, but when it did, breathing became a bit easier. Morgan began to smile more. We, as a family, enjoyed life more. We understood each other better. There was no more suppression of autism, there was only expression of Morgan’s truest self. Sometimes his truest self wasn’t the happiest child or the nicest, but he’s been himself and not some representation of what I wanted him to pass for. This begins with allowing him to stim and extends to indulging him in his love of Thomas the Tank Engine at the age of 10. We used to fight against those things.

He’s in what is considered middle school here and with it comes clubs, a dance or two and some pressure to fit in. Morgan doesn’t really feel that pressure, I think, but he misses having friends. A teacher, when I was chatting with her, offered up some suggestions that would, in a sense, eventually allow Morgan to “fit in and pass” as a typical child. I laughed.

I told her that “being typical” isn’t possible and therefore, isn’t on our radar. I don’t want my son to pass for something that he is not. Morgan is the most genuine person I know, and I want him to stay that way for as long as possible. I don’t believe that teaching him to mask his personality, his thinking, his mannerisms or his truest self is the best way to go about things. The teacher saw my points and agreed.

I can’t wash my son typical. I don’t want to. I don’t want to compare him to his typically-developing peers and feel sad or long for something we’ve never had. I don’t want to push him to be something he’s not. Instead, I would rather push him to be the best he can be. The less I’ve pushed Morgan to “pass,” the more I’ve allowed him to play with his autistic peers, typical peers who get him and just “be,” the happier he’s been.

That’s the end game for me, right now. Happy.

I understand why, out of ignorance, I wanted my son to assimilate and “become typical.” I thought that, with enough hard work and diligence, he could figure out how to be typical and happy. My very literal brain was taught by society that my son would never be happy so long as he was autistic. That he could never be happy as an autistic.

I’m so glad that I stopped listening to what I was told. Society is wrong.

Being atypical is not easy.

Being autistic is not easy.

But you can be happy.

It just takes the right environment.

Path less traveled

This post originally appeared on Deciphering Morgan.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
TOPICS
JOIN THE CONVERSATION

Parent Like There’s No One Watching

145
145

My friend told me once that I could find the silver lining in anything. Here’s a big one that I’ve found: being a parent of an autistic child has humbled me and made me a better parent. Specifically, I’ve stopped caring about what strangers think about my parenting skills. It took me a lot of searching to find that particular silver lining, and it wasn’t easy to find.

2014-07-08-IMG_20140620_191702300x300

Sometimes Bella can’t handle all the people at the store. Sometimes she doesn’t want to leave the spring fair at the elementary school. Sometimes she can’t share or take turns the way other kids can at her age. It could be anything or nothing at all. But her reaction is often huge, her meltdowns epic and when they’re public meltdowns, well, you can imagine how fun that is. I’ve been screamed at full-blast in Target over a toy I didn’t buy. I’ve had to coax an anxiety-overloaded child off the floor at Jo-Ann Fabrics because she’d just had enough. I’ve left parks carrying my child like a sack of potatoes kicking and screaming because she wouldn’t leave any other way. I’ve been slapped, scratched, kicked and almost bit while strangers watched (or pretended not to watch but lingered just a little too long to leave any kind of doubt as to whether or not they were shopping or watching).

It’s not always meltdowns, though. Sometimes it’s just all the quirky things you don’t notice around the house but are glaringly obvious when you venture out into the real world. I had to tell Bella once that no, not everyone in the store thinks it’s funny when you stand in front of their cart, put your hand up and shout, “STOP!” Also, kids tend to notice when your daughter licks every doorknob in the hallway at morning drop-off. Her eccentricities are amusing at home but were mortifying in public. I found myself saying, “No, Bella…” the entire time we were out, which only aggravated me and put her on edge.

I used to walk out of public places feeling embarrassed and humiliated. Partly because of how my child behaved but also partly because of how I behaved. So often, I found that I was parenting for the benefit of those around me. I felt their eyes watching me, judging me and so I would perform for them.   said what I thought I should say, what I thought people were expecting me to say. Instead of calmly and patiently waiting for Bella to cool down before talking to her, I would jump the gun and reprimand her when she wasn’t ready to process what I was saying. I would speak harshly to her so people could hear that I was in charge, that I was doing the right thing — even though the right thing for Bella doesn’t look or sound anything like what the right thing might be for other kids.

My worst parenting moments, the ones I am least proud of, happened because I was trying to impress a bunch of strangers I’ll probably never see again.

One day, after a particularly awful meltdown at the grocery store, I was driving home and had a simple but important thought flash in my head:

I’m not responsible for those people.

I have no control over those strangers’ reactions or perceptions of me. To put it simply, who the hell cares what those people think? The only people’s opinions that matter, the only people I am responsible for are my kids. I’m only beholden to them. I care about what they think of me and how they feel. No one else. Those lingering people in the store can just f**k off.

Once I stopped trying to impress strangers, my life got a whole lot easier. I don’t worry about what people will think of Bella and her behavior in public anymore, because I seriously don’t care. I focus only on my kids and how they’re feeling. If they’re happy, I’m happy. If they’re upset, then we deal with it the same way we would deal with it at home. Sometimes that means I have to stand in the store and wait a minute for Bella to pull herself together. Sometimes it means I have to stay calm and not react when my daughter tries to claw my arm. I know it’s because she doesn’t know what to do with the overwhelmingly intense feelings she’s experiencing, and reacting physically towards me is the only way she knows how to deal with those feelings. Other people don’t know that, but I don’t have to explain myself to them. If someone says anything dumb, I ignore them — I literally pretend like they’re not talking. If someone lends sincere help, I accept or decline politely (depending on whether or not it will make things better or worse, in my opinion).

People stare, and I’m sure some people go home and judge the hell out of me. Why should I care? I get to go home and feel good about how I treated my children.

2014-07-08-IMG_20140521_173341300x300

This girl’s opinion of me means a whole lot more than your opinion, lady.

This post originally appeared on 649.133: Girls, the Care and Maintenance Of. It was also featured on BonBon Break and The Huffington Post.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

145
145
TOPICS
JOIN THE CONVERSATION

Precious Photos Show the Unparalleled Bond Between a Girl With Autism and Her Cat

2k
2k

We’ve read and reported on a few stories about therapy dogs. This story is about a cat, though — one who’s helping a little girl with autism connect with the world. cuddles-iris-and-thula

In the photo above, 4-year-old Iris Grace, a child who’s made headlines before for her incredible paintings, snuggles up to her four-legged best friend, Thula (pronounced “Too-la”).  The Maine Coon joined Iris’ family in February, according to her mom, Arabella Carter-Johnson. Since then, the pair have been inseparable.

“It’s incredibly comforting for me to know Iris can laugh and play, just be together with no pressures, no struggles with language,” Carter-Johnson told The Mighty in an email. “They just understand one another.”

iris-playing-with-thula-handshake Up until last December, Carter-Johnson had given up hope on finding Iris a faithful friend. Despite her mother’s efforts, the 4-year-old showed little interest in socializing — until she met a family friend’s cat. And when Thula arrived a few months later, their connection was instant.

10498687_886323834715659_2077705486900838412_o 10478427_873982355949807_4676785710891739280_o

With Thula by her side, Iris wakes up easier each morning. Usually, she’s nonverbal, according to her mom, but in the last few months, she’s talked more and more. When Thula tries to jump on her iPad, Iris will say, “Sit, cat.” The two always sleep side-by-side.

“If Iris wakes during the night, Thula is there to settle her,” Carter-Johnson wrote on her blog. “It’s as though she instinctively knows what to do.

10257567_855831301098246_5562707804873168892_o

Iris’ mom hopes that when people read her daughter’s story — whether it be about her friendship with a cat or her paintings — they’ll change any preconceived notion they had about autism.

“I want people to see the potential in autistic children,” she told The Mighty. “It’s all about opportunities, both Iris and Thula are proof of that. Who would have thought a [little girl] would inspire millions worldwide with her paintings or a cat could ride on a bike and take baths happily with a child?”

793863_838507829497260_3243959826667887394_o

964049_834505676564142_7066978315889973905_o

1655096_803798696301507_1949506949_o

Bonus! Watch the video below to see Iris’ amazing painting talent. And for more photos of Iris and Thula, visit Iris’ Facebook page. All photos via Arabella Johnson-Carter / IrisGracePainting.com.

h/t BuzzFeed

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
TOPICS
JOIN THE CONVERSATION

On Learning My Second Child Can Move Her Legs

309
309

672470C9-42A5-47FB-A98D-AC765C9937E9_zps6xeqgbsz (1)

My daughter can move her legs.

I figured she would. Why wouldn’t she? Lightning doesn’t often strike the same place twice.

And by lightning, I mean spina bifida. And by place, I guess I mean… me.

I knew she would move her legs. Still, I was not prepared.

For the triumphant force of it. For the sight of kicks and squirms. For the ultrasound tech’s cheery exclamations saying, “Look at those legs move! She is kicking up a storm in there…”

I wasn’t prepared for how those words, lovely and true, would tear at my heart. It was just too much, and I wept in that soundless way – the way that collapses your insides and leaves your belly tensed and quaking. The crinkling of the butcher paper gave me away. The room went silent as my husband and I joined hands.

But it’s not what you think. Or at least, it’s not what I would have thought. If someone had asked me to predict how I would feel the moment I heard those words, I would have said one word: relief.

But relief was not the thing that hurt. Neither was joy. Neither was gratitude.

I did not feel relieved at all. I felt torn. And protective. And jealous somehow. I was watching my daughter flit around the screen, but I couldn’t stop thinking about my son.

The thing is, my daughter still feels abstract. My son does not. I know my son. I know him in a way that I do not know my daughter – not yet. And I know that I love him. I know he has value. I know he will face challenges in this life that his sister will not. Somehow (although even as I write this it sounds strange), rejoicing over legs that move felt wrong. After all, my son can’t move his legs – but there is so much more to him than that.

61527BE5-2591-4D37-81D0-DF1913C4D9DF_zpssttrrkpr

I guess I didn’t want to admit that legs matter and when those joyful words fell upon my ears (“Look at her legs move!”), I felt a protective urge to say – so what?

But I knew “what.” I knew the moment I heard that knee-jerk question burst inside my head. The “what” is the running. It is the hopscotch and the trampoline. It is taking the stairs. It is reaching the highest shelf.

Still, to me, those things are unremarkable. They are secondary. They are not the real “what” – the “what” that I wept for.

The real “what” is in how she will be treated – because this world is designed for people like her. And it will value her automatically, in a way that it is still learning to value her brother.

Relief was not what moved through the air that day. I think that’s OK, though. There was still wonder. There was still anticipation and excitement for this new life, and we were thankful. I am becoming a mother of two – two people who will be different on the outside, just like on the inside. I am still learning what this feels like.

I should mention that my daughter is beautiful – I can tell already. She will have her own struggles and flaws. Her life will not be completely typical or completely perfect – at least, for her sake, I hope it won’t be.

And she will move her legs.

But there will be so much more to her than that.

***

For those of you with multiple children, did you ever worry about (or feel protective of) your first while waiting to meet your second?

If you, like me, have a child with a disability, was it hard knowing how to feel about baby #2 being “typical?” Did you feel relief? Joy? Mixed feelings?

This post originally appeared on What Do You Do, Dear?

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

309
309
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.