“What’s Wrong with Him?” is Better Than “He Doesn’t Exist.”

by Jo on September 17, 2013

 

Don't let this be the message you send your kids into the world with.

We were just wrapping up our evening and putting our leftovers into our to-go boxes when she made her way towards me, her cheeks flushed, her eyes hinting at her humiliation.

“I’m so sorry,” she said.

At least, that’s what I thought I heard her say. We were at a local pizza joint with our sons’ baseball team, enjoying one last hurrah before the little league season was officially over; suffice it to say it was a bit noisy and crowded.

“Can you repeat that? It’s so loud in here!” I half-shouted at her.

“I’m so sorry!” she yelled back.

“For what?” Now I was confused. Why was she apologizing to me?

“Apparently my son went up to your son and asked him what was wrong with his brother. I’m so very sorry!”

And now I will tell you exactly what I told her:

I don’t want you to apologize.

I want your child to ask about my son Andrew; about what autism is and what having special needs means. I want your child to want to understand my child better.

I want your child to be aware that someone with special needs is in their presence, and I want them to seek out information from a reliable source, such as Andrew’s brother, or myself, rather than relying on assumptions and misinformation.

I want your child to feel comfortable asking questions and know they will get a straight-forward answer. I want your child to know it’s okay to be curious and, more importantly, that it’s okay be confused about why Andrew acts differently from the other kids.

I want your child to want to know.

Trust me. It’s infinitely better than the alternative, which is to whisper behind my son’s back in hushed voices filled with judgment that comes from fear and a lack of understanding.

I know it’s awkward for you as a parent; I know why you apologized. For generations, children have been taught that staring at someone in a wheelchair is rude and  if we see a blind person walking down the street we must quickly get out of the way and avoid making contact.

We encourage our children to be accepting as long as it’s from a safe distance, and in turn, we’re doing everyone a big fat disservice.

The tragedy is not in the diagnosis, or the bluntness with which a child may approach the situation and ask, “What’s wrong with him?”

The tragedy is in teaching children to stay away from those with special needs and mind their own business.

You can spot the kids that have been exposed to this way of thinking instantly: These are the kids who hover in the background and will look right through your child if they happen to get too close.

Do you know what that breeds? Intolerance. Fear. Hatred.  An Us vs Them mentality, and before we know it we’ve got another generation hell bent on thinking they’re better and more worthy than anyone who appears different or weaker.

I wish I were being dramatic, but I live this reality each and every day – the stares, the sideways glances, the curiosity hanging in the air so thick it’s almost suffocating. Yet so rarely does anyone take the initiative to come up and ask me about my son.

The few who do are usually children. They want to know. And I want to tell them.

My son Ian wants to tell them too, because his big brother is worth asking and talking about.

He’s ready to tell them about autism, and what it’s like to have a sibling with special needs. He’s ready to tell them how proud he is of Andrew every time he reaches a new milestone or tries something new and difficult in therapy. He’s ready to talk to them about the very first time he heard his brother say “Ian” correctly, or the fact that Andrew loves to watch kids go down the slide while he stands off to the side and yells out “WHEEEEEEEEEEE!!”

So don’t apologize for the beautiful, natural curiosity of your child.

Curiosity leads to education and empowerment, something both of our kids will benefit from.

Instead, guide your children and teach them that it’s okay to ask. Give them appropriate language. Email me if you don’t know what to say. I’ll take you through it, step-by-step. Tell your children there’s nothing wrong with wanting to know more about the millions of things they don’t understand because knowledge is power and there are so many wonderful things to learn about our amazing special needs population.

When I’m out with my special needs son and I see your kids sharing the same air, playing beneath the same sun, giggling in that same carefree, uncontrollable way Andrew does, I see hope and I see opportunity and I see a very real possibility for change.

Your child will someday vote on the issues that are relevant to my child.

Your child will someday encounter my child on the street, in a Dr.’s office, at the beach, in a restaurant. They will either hurriedly walk past him or hold the door open and make sure it doesn’t slam in his face.

Your child will someday ignore or embrace my child, lift him up or tear him down, pretend he doesn’t exist or defend his rights as a human being.

Your child is the key to my child’s future safety and well-being.

So I’d love the chance to introduce them to one another, seeing as they’ll be inheriting the same world.
All you have to do is walk in the right direction.
Towards us.
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{ 59 comments… read them below or add one }

jillsmo September 17, 2013 at 6:15 pm

Beautifully written, as always <3

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Jo September 17, 2013 at 6:19 pm

Thanks honey. Means so much to me to hear you say that. =)

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Dawn September 17, 2013 at 6:17 pm

This was so beautiful and SO IMPORTANT!
Great piece!

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Jo September 17, 2013 at 6:20 pm

Thanks so much Dawn!

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Maureen Wallace September 17, 2013 at 6:41 pm

This is SUCH an important message… and I couldn’t agree more. Love that you went beyond the moment to think about how today’s children become tomorrow’s voters (hopefully). Thank you for such a great post!

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Krystal September 17, 2013 at 7:06 pm

I love this! It is so important and needs to be said – I wish more people would just let their children be curious because its their innocence that makes all the difference in how they learn.

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Kim September 17, 2013 at 7:11 pm

This. Yes. Thank you for writing. Sharing!

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Rebecca September 17, 2013 at 7:12 pm

Are you sure you don’t come in here and spy on my family ;)

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Jenny Shaffer September 17, 2013 at 7:31 pm

LOVE IT!

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Mike September 17, 2013 at 8:11 pm

this is great, thanks.
I am a father of two kids on the spectrum, and this is very touching.

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Jo September 17, 2013 at 8:22 pm

Thanks for reading Mike. I’m glad you enjoyed it!

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Shannon Bieger September 17, 2013 at 8:12 pm

Hi Jo – Our MomsNext group is considering the idea of doing a topic in the spring called “What I want you to know about my child…” We would have parents with children that have a variety of qualities that other parents may not know how to deal with (severe allergies, Down Syndrome, Autism, etc.) sharing what they wish all parents could know about their child. We haven’t really started to formulate the details just yet (still ironing out the details in our fall schedule) but would you be interested in being on the panel? It’s a group of about 50 women and we’re located in Tustin.

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Sharice September 17, 2013 at 8:47 pm

Hi Guys,
I was wondering if I could connect with you somehow. I’ve volunteered to put a lesson together for the 1st graders at my ASD son’s school. It’s tough finding material and examples geared towards little kiddos to help them understand what autism is.
I gave a talk to my NT son’s class about autism back when he was in 2nd grade and the kids did a 180 in how they treated my ASD son….I owe it to my son to do this!

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stefanie September 17, 2013 at 8:29 pm

i would have die if my parents ever had a sign like that put up on are street for me .we had on the street for a gorl who i was friend with that was deaf .some how she knock it down an hid it at her house lol it hard enough haveing a disability as a child an being teasd all the time with out a parent throwing more coal on the fire as my parentrs would say .they did what ever they could to make me fit in not stand out more .an when u put a sign like that up .it like putting a red flashing light on are head .i have autism .an they had to watch me .but there way of keeping your kid safe w3iyth out doing thsat an trust me no one pay att to those signs any ways car would still dr5ive fast up the street .just telling you what it like from the kid side

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Franchesca September 18, 2013 at 4:48 am

Stefanie, I’m glad you’re reading up on blogs about disabilities, but the sign was not real, it’s photoshopped. The blog is about helping people to be ok asking questions when a child has a disability. I’m telling you what I tell my own daughter. Be careful of sarcasm when you read – especially on line. Before you get too offended or upset at anything, do a reality check and have a trusted friend take a look as well. Take care and hope you’re doing well.

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Sarah September 19, 2013 at 11:32 am

It is obviously a photoshop job, but there are signs of that nature that actually reference someone with special needs living nearby.

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Anna September 17, 2013 at 9:03 pm

Yes! Exactly! Beautiful heartfelt words.

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Darcy September 17, 2013 at 9:06 pm

This is great! Thanks for your posts!

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Kathy Minderman September 17, 2013 at 10:08 pm

Goosebumps, and so beautifully written. For us it’s our wonderful 5 year old, Grandson, we clap, and “ooh and ahh” about things that most take for granted, for us, they’re miracles. Thank you for sharing.

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Terry September 17, 2013 at 11:12 pm

I understand your daily dilemas. I have triplets with autism. One of my daughter’s is high functional and attended scouts last year independantly. This year they want someone to go with her. She knows the difference. She doesn’t want mom or dad to go with her. I don’t blame her, this was her thing.
What do you think?

Terry Penwarden

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Niksmom September 18, 2013 at 12:30 am

“I wish I were being dramatic, but I live this reality each and every day – the stares, the sideways glances, the curiosity hanging in the air so thick it’s almost suffocating. Yet so rarely does anyone take the initiative to come up and ask me about my son.”

Yes, this is our reality, too. *sigh* Another great post, Jo. xo

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Quiet Contemplation September 18, 2013 at 12:31 am

Yes, I always cringe when I hear people talk about how they went off on someone who made that kind of comment, or something similar about their child. Adult, or child if you meet ignorance with anger you will have changed nothing. The other person is still ignorant, and now they’re afraid to approach the subject again, because they feel they’ll misspeak, and offend. Great post!

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sh September 18, 2013 at 7:26 pm

well said!

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Jennifer September 18, 2013 at 12:46 am

I would be interested in hearing some other responses. I have trouble when kids ask me that question, and I try to be calm and nice, but while my son is not autistic he is special needs. I know I fail on response, yet I want the kids to be empathic, and I don’t get upset at their questions.

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Heather Bowie September 18, 2013 at 1:41 am

Yes, this exactly. These conversations connect us and are so important. I love kids’ free style question asking.

Thanks for sharing.

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Nancy September 18, 2013 at 2:34 am

Great article! Great points!
I am interested in how you explain autism to little kids. I’m often at a playground or another public place when a kid asks me “Can she talk?” I say “A little bit, but she has autism, do you know what that is?” And they almost always say “No,” leaving me a little bit stumped. I haven’t figured out how to explain autism in 3 sentences in terms a 5 yar old can understand. I have enough trouble explaining it to adults.

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Amber September 18, 2013 at 7:26 pm

Have you ever hooked up the DVD player wrong or listened to a foreign language you don’t know? I feel that is the closest thing I can relate too. Overly simple, but I tell my younger kids their brains are mixed up and can’t tell them what to do like theirs can. And to be extra nice because that would be super hard.

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AJ September 30, 2013 at 4:51 am

I usually tell the friends of my typical children (who are usually the ones asking about my autistic daughter) that she has autism and that her brain works differently than most childrens’. Sometimes that’s enough and sometimes they want more info, in which case, I go into detail about how she speaks differently and likes to play in different ways but I ALWAYS say that she is not sick or broken…just different. What’s great is that they usually run off and play and I almost always see a noticeable difference in the way the approach her. The fear is gone and there’s a natural curiosity and almost maternal quality to their interactions. They often come back with more detailed questions like, “Why is she wearing headphones?” or “What games does she like to play?” Opening the dialogue is such a beautiful thing.

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Maggie M. September 18, 2013 at 11:54 am

Love this and how you wrote it- very touching and a much better way to go through life.

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DeBruyn September 18, 2013 at 12:33 pm

My youngest of two children I have, my best friend’s two children and several others I know have special needs. My youngest has adhd, pdd(mildly autistic) and showed signs of bipolar when she was first diagnosed. The bipolar disorder they said if it develops would develop near puberty or in the teen years. My best friend’s oldest son has a learning disability and I’m not sure which one but he functions like a normal child, her youngest son has a few problems, not sure what his diagnosis was, but I know autism was in there.
It can be very draining and stress-filled but I’d not trade the three of them for the world, they have given us an outlook on things in new twisted lights. The thing is THEY look normal, they might be a little slow to react and make few friends and few people have asked what’s wrong with them since before school age, but the questions were there as well as the accusations of there’s something wrong take that kid to a specialist.
There is intolerance with lots of things in life… There is also the ignorance of neglecting when others do see something wrong, because few parents want to admit that a product of flesh and blood is flawed in anyway. We need more awareness on both fronts. I admire you for bringing this to the foreground.

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Jenna Weil September 18, 2013 at 6:20 pm

Once again, you write exactly how I feel! Keep up the great and inspiring work :)

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Downs Side Up September 18, 2013 at 9:34 pm

A perfect post and a message we all strive for.
So glad I found your blog via Alison Keane.

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Mark Hostettler September 19, 2013 at 2:18 am

You just put a huge smile on my face, thank you. :-)

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Shannon September 19, 2013 at 4:41 am

Amazing article. So well said. It gives me things to think about when trying to explain my AS son’s behavior. I just got him diagnosed & am trying to explain it to his younger brothers. You made me look up and beyond what is happening in my house & reminded me to make sure I give everyone the chance to understand what AS/ASD is. I like the line from Temple Grandin – he is different, not less. We all need to remember all humans deserve our respect, no matter how different they may seem.

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Kelly Scheel September 19, 2013 at 2:58 pm

My daughter has Down Syndrome. I have said for years you can tell the children who’s parents aren’t so excepting. Because their children just stare and aren’t welcoming. But we are trying to change that. Thank you

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Teresa September 19, 2013 at 6:11 pm

I am in a wheelchair and would rather have people ask why than shy away from me as if Myotonic Dystrophy was contagious. I love the children’s innocence in asking.

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Rosie September 19, 2013 at 7:52 pm

I was one of those “it’s not polite to stare” children. Then I grew up, my friend husband was a paraplegic; I met and rode with several hand-cyclists (those bicyclists who could not walk), played doubles tennis on a league comprised of one player in a wheel chair, and one “able-bodied” player, It’s called one up, one down.

By the time I volunteered at the Special Olympics, I could no longer remember that child, and my friends would ask me how that talk to someone “current?” How do they approach these folks and offer to help them, with a door, their bags, bike, chair, et al.

My answer? “The same way you ask anyone else.”

Thank you for your article.

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Rosie September 19, 2013 at 7:54 pm

Darn auto correct. I meant to say some one different.

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Darcy September 19, 2013 at 7:58 pm

I grew up being taught it was rude to ask. I don’t act like someone is invisible but it’s hard to pretend there isn’t something different. I would love suggestions on how to approach and ask in an appropriate way…for me and my children. I doubt want to offend with poor word choice but I honestly don’t know how to say it without dancing around the issue (in most cases).

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Amy September 19, 2013 at 10:26 pm

I am completely convinced my 5yr old girls were born to make a path for my 7yr old son who is on the spectrum. Two for one special on social skills! Your post gives me strength!

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Julie September 20, 2013 at 2:13 am

Love this! Now if only we could get grownups to do the same thing, be willing to ask rather than run away… thank you for sharing :)

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LH September 20, 2013 at 8:09 am

What a beautifully written blog!
I have been a teacher for many years and have taught a number of children with a range of special needs. They are often the highlight of my class and I have loved teaching each and every one of them.
People often talk about how cruel children can be. Whilst I know that this can be true, every single day I also witness how kind and compassionate they can be. In my experience, many of the children probably don’t ask the questions which you would like them to ask. Instead, they just go on about their business, accepting that everyone has different struggles. In saying that, if they see the significant adults in their lives just treating everyone as equal, they automatically do so too.
I hope that the children who go to school with your son treat him as one of the gang, just as my class seem to do.

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Heather September 20, 2013 at 5:57 pm

I love this post. It is relevant in so many different lives. We are a biracial adoption family and honestly sometimes I get sick of the overly personal, poorly worded questions that are thrown our way. I never mind if a child asks but parents should know how to word a question so that it is not offensive. Your post reminds me to look past the wording and remember that if we don’t educate the public nothing will change. Thanks for the friendly reminder.

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maryanne September 22, 2013 at 10:25 pm

Heather, we face the same stares, questions and strange assumptions that you do. We are a white couple who have adopted two biracial girls. ‘Whose are they’ is the first question and always from the adults. REALLY?? When children are calling you ‘mommy and daddy’ what do people think? Top that off with the fact that our oldest daughter is ASD/ADD/PPD and it just gets better. The kids will say to me ‘are you her REAL mom?’ We then explain the basics about adoption.
We wouldn’t change a thing about any of our kids, unless it would make their lives perfect…and that isn’t going to happen for anyone, whether they have average or special needs kids like we do. Besides, they are perfect for me. Great Post!

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Christine September 21, 2013 at 12:52 am

LOVED IT! As a moderate/severe special education teacher, it brought tears to my eyes. I would love to repost it on my website, if that is ok with you! It is something that I face as a teacher every day too…

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Jamie September 21, 2013 at 1:21 am

Love, love love

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TUC September 21, 2013 at 3:44 am

Spot on, and beautiful.

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Deb September 21, 2013 at 1:01 pm

Wonderfully said. You brought tears to my eyes.

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Vickie September 21, 2013 at 3:53 pm

Exactly! I always tell anyone that does ask, not to apologize for asking. I’d much rather they ask than stare or avoid. I find that the people that DO ask really want to understand and that is Always a plus! I will explain my son and his autism to anyone who is interested enough to listen.

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Lynn Pratt September 21, 2013 at 8:10 pm

Thank you for a beautifully written piece. Being the mother of a special needs son, who is now 42 years of age and has lived with me every day of his life, I wish I could have written something as beautiful and meaningful. Julie, who also responded put it very succinctly when she said “Now if only we could get grownups to do the same thing, be willing to ask rather than run away…thank you for sharing”, hit the nail on the head. My experience has been that adults seem to think our children’s issues are contagious and shun them. Again thank you.

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Try Manoellang September 22, 2013 at 2:02 pm

Thank you for sharing this. What you wrote also describe how some people see some children with special needs in my country, Indonesia.

I really appreciate your honesty and kindness in sharing this.
Thank you again.

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Jodie Meschuk September 23, 2013 at 3:07 am

Thank you so much. I was forwarded this from a friend and I am already so inspired by you! Can’t wait to follow more. http://this-little-light-of-mine.org/

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nikki September 24, 2013 at 11:15 am

i get it. kids notice and will ask, they might even be a bit scared or impressed by our special needs child.. up to everyone to help them understand it better.. i recently have been dumped from a car pool because ‘my daughter is just not comfortable with the arrangement’. my son wasn’t coping too well with the change and was complaining about the colour, the smell and the company in their car. for 3 days.
the mother knows well about his autism, had shown sympathy for other things that had happened at school. yet she send me a text to say it’s over. instead of educating her daughter and help us all get used to the new situation.

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Dan Burns September 24, 2013 at 8:38 pm

Yes, everyone needs to know.

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Sue September 24, 2013 at 10:24 pm

Thank you so much, from a mother of two little boys with special needs and their two big sisters who fiercely protect them and try to help others understand them.

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Dragana September 26, 2013 at 9:07 pm

I am so glad I came across this post. I have a 7 year old daughter who will approach a child or adult with special needs and ask them why is a child fed through a tube on her stomach, or why is a person in a wheelchair, and why doesn’t he get up and run like her…
I am one of the people who would need help in how to behave in a presence of another human being with special needs. The first and most overwhelming feeling I have is how unfair life is and why couldn’t all human beings just get a fair start in life, i.e. be able to run, play, speak, see, hear, think…I also think that I feel sorry for special needs people… and if i know one thing about special needs people, it is that they don’t want, need or seek pity, yet all I want to do is either cry or do something to make it easier for them.
I like to think that I teach my daughter well when it comes to asking questions, being curious, wanting to learn, because that will help her know, understand, respect them, be compationate.
It is beyond me how cruel and ignorant people can be when it comes to others with special needs. I wonder whether they just fell from the sky, they are just so ignorant.
I appreciate your blog, thank you for sharing, wish you an easier life for your self, your family, and of course your son, and I wish for you less of those people who stare, but just ask…

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Lynda October 10, 2013 at 1:25 am

This is perfect! I have a 7yr old little girl who is very shy maybe even selective mutism (not diagnosed) and I encourage her to ask questions if we see a special needs children and adults. If I don’t know the answer then we ask and research together till we figure out what she needs to know.

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Zendaya/awsome Lovelovez April 9, 2014 at 12:26 am

He yells at me all the time I HATE him mean to me all the time if I accedently graphicsthe wrong charger he starts @$%&*#%@&@& bull

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Zendaya/awsome Lovelovez April 9, 2014 at 12:26 am

Grab the wrong

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