11 Things I Want People to Know About My Daughter on the Autism Spectrum

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My daughter, Charlotte, is autistic.

Since her birth in August 2013, Charlotte has made a monumental impact not only on myself, but on the lives of those around her. Sometimes, however, people may be unkind, sit in judgement or fear because Charlotte may behave in ways most people do not generally understand or accept.

This is something I am learning, and something I am working hard to change. I know I will never change the attitudes of everyone as some people might remain ignorant. I see that as their choice. Their loss.

To those who are genuinely trying to understand our journey,these are some things I’d like you to know.

1. Don’t feel sorry for us.

We don’t feel sorry and neither should you.

I know the immediate reaction when somebody says they are ill or in pain can be to say, “I’m sorry,” but that’s not what’s happening here. Charlotte does not “suffer from” autism. It is not a disease. It is a disorder, and there is a big difference.

2. Autism spectrum disorder (ASD) cannot be “cured.”

I often hear “eliminate gluten from her diet,” or “take her to an acupuncturist,” when people learn Charlotte is autistic. While perhaps the advice is well-meaning, it is nevertheless misguided. I am open to trying most things, so long as the risks do not outweigh the benefits, but I need to be very clear about this — ASD is a neurological condition. It cannot be “cured.” Nor does it need to be.

3. Just because I admit it’s not easy, doesn’t mean I don’t love my daughter.

I often shy away from sharing the reality of parenting a child with a disability, not because I don’t want others to know or because I am ashamed of my little girl in any way, but because I am hesitant I may be judged or misunderstood. My general response is to shrug off any question of, “how do you do it?” deflecting with something along the lines of, “she’s so worth it.” Which is true. Incredibly true.

What I don’t say, and what is also true, is that sometimes it is not easy. Parenting isn’t easy. Parenting a child (or adult) with a disability just adds a whole extra layer of complexity. If I admit that sometimes this isn’t easy, I need you to know it is not a reflection of my little girl or how I feel for her. Admitting we have bad days is just admitting I am human. We all have bad days. It doesn’t mean I don’t love my daughter more than any amount of words can truly express.

4. ASD is a “Spectrum.” It varies widely.

As the name suggests, ASD is an incredibly complex neurological condition which has a huge scope of factors that are relevant to some and completely irrelevant to others. Just as you and I have differences, preferences, and unique ways of seeing the world, so do those with ASD.

5. Autism is not something my daughter will grow out of.

She is a child with autism who will grow to be an adult with autism. Sometimes it seems there is more tolerance for children with autism and other health challenges than there is for adults with the same diagnosis. Children with autism grow to be adults with autism. Their neurological makeup will not change. Who they are will not change. Nor should it. Everyone needs understanding, no matter their age. No matter their condition.

6. Maybe the world needs to be more tolerant.

My daughter does not need to change. Since Charlotte’s diagnosis, we have been bombarded with information about how we can make Charlotte conform to societal norms and expectations. There are many societal norms that Charlotte doesn’t understand, and I struggle to see how I’m supposed to claim I accept her for who she is if I’m constantly being told to try to change her.

While I acknowledge there are some things we need to reinforce to keep her safe, there are many things that are merely for the comfort of others. Eye contact is a classic example. It is not necessary for communication. We can communicate effectively without it.

While we are encouraging Charlotte to make eye contact, we are doing so mindfully and compassionately. Ultimately if it distresses Charlotte, we will not pursue it. We praise her for moments of eye contact and are genuinely grateful for those special times.

7. A behavior that seems out of place to you might have a very real place in the life of someone with autism.

I remember when Charlotte was still a baby, she started shaking her head from side to side. We thought it was a phase she would grow out of. We thought perhaps it was due to her hearing loss (as Charlotte also has permanent hearing loss in her left ear), and she was experimenting with how she hears sound, and in turn, experiences the world around her. Looking back, I can now see she was “stimming” (self stimulating or sensory seeking behavior) from an early age. She will be 4 in a few short months, and she still shakes her head regularly. She often closes her eyes to increase the impact of the sensory experience.

It may seem like an “odd” behavior, but it’s calming to Charlotte, and it is another way of expressing herself. It is not different in our world, and there is no reason why it should be “odd” in yours.

8. Just because Charlotte cannot speak with words does not mean she doesn’t have anything to say.

When I mention Charlotte is nonverbal, some people immediately assume she might have an intellectual disability. Many assume she’s like a baby, and treat her as such. Charlotte is not a baby. She is clever and coy, funny and caring. She has a lot to say, you just have to be willing to understand and observe.

A sideways glance from Charlotte says what words could. The combination of a look, body language and actions communicate what a verbalized sentence could.

The greatest need for interactions with Charlotte is time. Take time to sit down with her, be gentle with her, talk to her like any other little girl, and wait for a response. I guarantee there will be one. It may not be immediate, it may be subtle, it may not be what you expect, but it will be there.

9. Different interests are not wrong.

Charlotte has often had different interests to other little girls and typical children her age. She doesn’t play with dollies or understand dress-up. Typical toys in typical ways often hold little or no interest. Give her anything new and in all likelihood she will interact with it the same way she does with most new things — she will feel it, bite or lick it, and turn it over and over. This sequence of events is highly misunderstood. It is actually a clever way of interpreting the world for a little girl whose sensory systems seem all jumbled up.

While playing with a doll may hold little appeal, she loves nature, and finds time outside soothing. She could spend hours feeling the breeze in her hair and tearing up leaves and grass. She loves water, and could spend all day splashing it or kicking her legs in it while she lays on her back. These behaviors and interests may be a little different to what is typically expected, but that doesn’t make them wrong. It just makes them different.

10. Sometimes we feel lost and helpless, too.

We are all learning. There are many times we get it wrong. We don’t have all of the answers, all of the time. We are still learning to interpret Charlotte’s behaviors, identifying her needs and ways we can best meet them. It is a process. It takes time, and patience, and compassion.

We aren’t experts, we are just people willing to learn and doing everything in our power to understand our beautiful little girl. We don’t always get it right, but we persist. It is our openness to difference that is our greatest asset. Our daughter has given us that understanding, and for that, we are eternally grateful.

11. Charlotte is more than a label.

Please don’t make assumptions based on what you think you know. I can’t begin to tell you how many times a doctor or carer reads Charlotte’s file and forms assumptions based on those labels. They see words such as “autism,” “nonverbal,” “not walking,” “global developmental delay” and “chromosomal abnormality.” They see “hearing impairment” and “vision impairment.” They immediately paint a picture of a child who can’t move, can’t communicate, can’t interact. They paint a picture of a child with no personality, and nothing to give.

If there is one thing you take from this post, know this: everyone has something to give.

Everyone.

We just have to be willing to look, listen and interact without judgement. We have to be open to gifts given in unconventional ways. Charlotte may not speak with words, but she can communicate. She may be a little girl, but she has a big personality. She is fierce and determined, but she is also soft and kind. She will sit beside you, and her warmth will envelop you. She will unexpectedly reach for your hand with such softness, and hold it so gently, so carefully, as if it were the most important thing in the world — and in that moment, it is the most important thing in her world. When she gives, she gives abundantly. She gives everything, all of her. Unquestionably. When she looks into your eyes, her eyes seem to pierce your soul. Sometimes the intensity of her gaze takes my breath away.

No, Charlotte is not a sum of labels. She is the most complex and incredible gift who I am proud to call my daughter. Part of me lives in her, and I find that to be the most incredible and humble knowledge of all.

We are human, first and foremost. Difference is not something to be feared, rather it is something to be embraced for the incredible gift that it is.

Follow this journey at the We and Us Blog.

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Thinkstock photo by Halfpoint

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Schools Across the Country Are Banning Fidget Toys

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Fidget toys, also described as fidget tools, have been around for years, but now, thanks to their increased popularity among students, they’re being banned from schools around the country.

Fidget spinners, which are thought to help people with autism, anxiety and ADHD, have become one of the most sought after toys of the season, selling out in stores and ranking among the most popular toys on Amazon. Now, some teachers say rather than distracting kids from their anxiety, the toys are keeping students from their work.

“I think it is beneficial for the students who actually need them, which is a very small number,” Katie Zimmerman, a teacher at Collegium Charter School in Exton, Pennsylvania told The Mighty. “Most of the students with fidgets are using them as a toy; they are focusing on the fidget rather than paying attention in classes. I do not think students should have them in class unless they have a specific need that calls for a fidget. I also think it should be limited to the students who have it listed in their IEP accommodations.”

While Zimmerman’s school has yet to ban the toys, dozens of schools – including those in Illinois, Pennsylvania and Minnesota – are starting to prohibit the spinners from their classrooms.

We asked our community what they think about schools banning fidget toys. Here’s what they had to say: 

“I think it’s wrong. These are not toys, but a sensory, distress tool for kids with special needs and anxiety. As an adult with Asperger’s, I find them really helpful. They should not be taken away from those who need it and are using it as it is intended for.” – Julie V.

“Maybe we need to stop calling them toys and marketing them that way. My son needs something to keep his hands busy so he can focus on the task. This is a tool for him. I am not standing in a line for hours so he can have the newest craze. If your kid wants one, keep the damn thing home. Stop making it harder for the kids that need these tools!”  – Stephanie S.

“My son has Asperger’s and ADHD. He probably needs a fidget toy, but so many neurotypical kids in his class have the spinning kind that the noise is hard for him to deal with. It’s a shame that something that has such potential for kids truly in need is being used by the general population and causing more problems in the classroom.” – Lindsay B.

“Fidget toys should be for kids and adults with autism, ADHD and other medical diagnoses. They’re being banned from schools because they’re becoming a hype instead of being used to assist those who require them. My kid’s school has banned the fidget toys from general use and only kids with additional needs and ISP and support needs are being allowed to use the fidget cubes. As an autistic adult and parent of autistic children with ADHD, I don’t think they should be on general sale to everyone. It’s now seen as a fad. We don’t all go getting wheelchairs or colostomy bags because some other person we know has one and it looks cool. They are special aids to help assist those who fidget and lack concentration skills or have anxiety and now it’s just a fad like Pokemon.” – Ros B.

“Honestly, the spinners are distracting and will not help with focus on school work. May be fine for waiting in a doctor’s office but not for focusing on work. I have one myself, and I spin it and I pay attention to the spinner. However, I think something like a worry stone or a fidget cube would be less of a distracting item and more of a focus tool.” – Erin C.

“My son has severe ADHD and is on the spectrum and while I think it may help him a little, I also warned him that if he took it to school and got it taken away for using it when not permitted, playing around with it, etc… then those were his consequences. There is a time and a place when his teacher said it was OK and if he didn’t listen, he lost it and that’s on him. His school banned them as of last night. It doesn’t bother me either way. But I think that because basically, every kid in the school had one, it’s not benefitting those that could really use it for its intended purpose.”  – Rachel H.

“They are a tool to help my son with autism. My son loves his spinner. He’s using this instead of gnawing on his hands. His poor hands are scarred from anxiety.” – Mary C.

“As a teacher, I definitely understand this if they make any noise at all. Twenty kids in a class can easily lose concentration if a few have noise makers.” – Kathy M.

“I think making them less thought of as toys and more thought of as tools would help a lot. Even doing something like making these fidget devices categorized as an accommodation on a student’s IEP would help a lot with making it so only students who really needed them could have them, instead of them being thought of as toys. These fidget devices are very helpful for students who have anxiety, ADHD, or students who need to stimulate themselves. Banning them, in general, is just going to do more harm than good.” – Kira M.

Image via Florian Schäffer.

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How My Friend Frank Helped Me as an Adult on the Autism Spectrum

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When I started my job at a big-name pharmacy I was starting over and excited for a new adventure. I didn’t realize I would be meeting a friend that would change my life, a friend called Frank.

When I started my job I was a little hesitant to tell others about having autism, but when I told Frank he simply said, “You have autism, you are not autism.” He really has gone on to teach me I should embrace and be happy with who I am.

Frank, no matter how busy he was, always took the time to show me what I needed to learn to be successful, and when I got overstimulated or feeling overwhelmed, he either taught me breathing exercises or he would remind me I was doing a good job and not to be hard on myself.

What makes Frank such a great friend is he actually took the time to get to know me, and he knew what to expect with me as an adult with autism. He looked past it and treated me just like everyone else. If anything, he believed in me and he never gave up on me.

One of my greatest achievements is getting Champion of Champions for my place of employment, and I believe I got this award because of my hardworking attitude and being a role model to the autism Community — and because my friend Frank who never gave up on me.

I have my everyday heroes and my friend Frank is one of them. He taught me to celebrate and embrace who I am and today I celebrate and embrace my autism and I help others as well. I decided to start my project by writing to those on the spectrum and their families. I wanted to do for others what Frank did for me. Frank has taught me so much and he is truly one of my greatest role models. But most of all, he is one of my friends for life.

He once told me, “You always make me proud.” Well Frank, my sweet friend, you’re the one who makes me proud.

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Thinkstock photo by: Wavebreakmedia

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It's Not the Day for a School Play for My Son on the Autism Spectrum

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My son, Sonny, wasn’t going to participate in his school play.

Sonny has previously surprised us by performing in the “Nativity” at Christmas, although he only stayed for the first half. When they announced they would be putting together a play to show everyone what they have been learning at school, I was excited. Sonny was to wear a pair of blue trousers and a blue t-shirt to become a blue alien in the play.

All was well and good leading to the play. I didn’t hear too much about the progress of the play, but I had the date in my calendar and was really looking forward to sit among the other parents and watch my little boy on the stage.

We got up at 6 am and were ready and breakfasted on time, but Sonny wasn’t happy. It was a challenging morning. Despite it all, we made it to school on time and with smiles, which was an achievement in itself. I told Sonny’s one-on-one he had a tough morning and in all honesty, I suspected he would not be able to cope with the school play. He was tired, so I recommended for him to do something calm and quiet with her rather than the play. In hindsight, the play was probably what was causing Sonny angst. The aide completely understood and we both agreed he needed to get through the school day. I learned he hadn’t really wanted to take part in any of the rehearsals and found getting up on the stage terrifying.

I’m not good at many things, but there are a few things I believe I am great at. Being a mother is one of them. I am so hard on myself; I am my own worst critic, but I know deep down what Sonny needs. With that in my mind, I continue to make decisions that are in Sonny’s best interests. If I’m right, then great, and if I’m wrong, then we make it as a lesson learned and try again.

Before Christmas, I beat myself up for not allowing Sonny to go the school pantomime, as I knew it would’ve be too much. This time, the decision to keep him from performing in the play was the right decision to make. There is no point in encouraging him to do something he doesn’t feel comfortable with. It will only make things worse and that’s not what anybody wants.

A year ago, I was seriously concerned that Sonny wouldn’t be able to thrive in a mainstream school, but he is. It’s incredible what progress a child can make when all the right supports are put into place. I can’t thank Sonny’s school enough for making it possible for him to access a good education in an environment in he adores and where he feels at home. I love to see him grow in all areas of learning. Even though I know he is not as far advanced as other children his age, I love to watch his reading come along and how he forms his letters in the air with his pointy finger. It melts my heart.

So in the grand scheme of it all, missing a school play to show what he has been learning isn’t the end of the world. I can see what he learns in all the little things he does. I can see his progress in the way he plays with his brothers at home. I can hear it in the beautifully words he speaks now thanks to daily speech and language support.

Today isn’t the day for a school play, but maybe next time will be.

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When My Autism Leaves Me Tongue-Tied

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My presentation of autism does not often render me unable to speak. Although, admittedly, I struggle with oral communication and am a much more fluent and comfortable writer, I did not have language delays as a child, and I am fully capable of talking in most daily activities. It turns out that it can actually be somewhat common for usually verbal (or even loquacious!) autistic people to have periods or situations where they can’t speak for one reason or another. I had no idea. Indeed, this happens to me somewhat regularly, particularly when I am scared or anxious or shy.

The emergence of this behavior always frightens me. When my ability to verbally communicate is swallowed, I feel powerless. Our world is not always set up to facilitate nonverbal communication. This makes me feel like I’m at a dead end when I’m in a situation where I’ve lost my voice. Sometimes, I’m not even aware this has happened. I just stare stunned, nearly catatonic, blinking, perhaps nodding (if I’m lucky), otherwise, just like a puppet crafted without a mouth. The world moves around me and I feel like I’m standing still, the central axis pole of a merry-go-round with all the people and horses, music and lights bobbing up and down with carefree purpose around me.

Sometimes I just watch in awe, oblivious to my non-participation. Other times, I feel like I’m my own statue in a wax museum, standing in a soundproof glass case around the action. The walls are sometimes a one-way mirror: I know people can see me, but they can’t hear me; or other times, I feel like I see everything but I’m concealed to the masses. When I’m aware that I’m in this state, I feel like a scared child. I want to tuck myself into a ball and be carried away by a parent to safety. I want to be hugged and shielded. I become afraid I will not stand up for what I want, or especially for what I need. Perhaps it’s my trauma background, but I sometimes get anxious that I’ll agree to things I don’t want to do. I’m not specifically referring to physical/trauma things, but less severe things that I still don’t want to do. It’s happened before: I’ve silently agreed to job offers, plans or commitments with others, giving people things that I didn’t want to part with, helping people in situations that seemed unsafe because they asked for help. A small shrug or nod “yes” seems to be a defense mechanism when I’m stunned or overwhelmed and can’t talk, even when I don’t want to agree.

One frequent situation in which this side of myself decides to assert herself (which is ironic because in doing so, she prevents me from being assertive!) is during medical appointments. No matter how much rehearsing or memorizing I do, outlining or even scriptwriting I bring for reference, or how much I’ve had to say about my issue prior to the appointment, it’s like I’m suddenly a nodding, shrugging and otherwise single-word utterance speaker. I think the stress of the appointment, the sensory overload of waiting, the pressure when it’s finally time to talk swallows me in a wave of stage fright, and the concern that my problems will suck up too much of the doctor’s time (I hate to be the reason others have to wait even longer) all combine in the least helpful way and transform my typically communicative and expressive self into a shadow.

While thankfully doctors usually have their patients’ best interests in mind, so it’s not like I end up agreeing to something counterproductive, I often fail to get my questions answered, which leaves me anxious or uninformed. I think it’s important to continue to strategize how to handle appointments or other situations that cause this issue, so that I can have the best possible outcome, and feel confident, safe and empowered.

Follow this journey on Processing Problems.

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To My Autistic Grandson on Your Birthday

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When my babies were born, my mom gave me some great advice. She told me I should write down all the things my kids did or said because she knew how easily I would forget. Like most great advice from my mom, I only halfway heeded it. I started a journal I wrote in occasionally, but I was lazy. I wanted to. I really did. But life took over and the kids grew up.

I found that journal a few months ago and read it. Although I hadn’t written much, it brought back so many memories. Cherished memories I had forgotten. It was really great advice, Mom, so I resolved then and there to start a journal for my grandson Noah. This is how my blog started. I guess you could say I took this whole “journal writing” thing to a whole new level. However, these random thoughts I put to paper are not necessarily the things I want to tell Noah. They are just my thoughts. My coping technique. When he grows up, I want him to be able to see how much progress he made every year. So I decided to write him a letter on every one of his birthdays. I missed his 1st birthday, so this is his first annual birthday letter.

My dearest Noah,

You came into this world much like you would spend your next two years. Very quietly. As soon as you were delivered, you were transferred to a little warmer with bright lights shining down in your eyes, and the nurse started, very roughly I might add, to clean you off with towels. Your little eyes were swollen and your skin was tinged blue with the very typical cone head that newborns have. You looked around and let out a little grunt of discomfort, or perhaps irritation, at the fact the we had removed you from such a warm comfortable place.

Your eyes darted around the room, trying to process all the information they were seeing. The lights were so bright. The voices so loud. I’ve always wondered if the process of being born is scary. What goes through an infant’s mind as they emerge from their watery, safe cocoon? Some enter the world screaming and thrashing about as if in pain, or at the very least, confused. But you, my little blue-eyed wonder boy, were just the opposite. After your initial grunt of disapproval, you stayed really quiet. You were so quiet, in fact, that I think you had the nurses a bit worried. I could hear them say, “He’s not crying.” After a quick once-over by the nurse, she gave you the OK and wrapped you up tightly in the little striped hospital blanket, put a tiny knit hat on your cone-shaped head and placed all six pounds, nine ounces of you in your exhausted mommy’s arms.

Your eyes began to focus on her face, and your little tongue was jutting in and out, like a baby snake, as if you were tasting the air. It was one of the most beautiful things I’ve ever seen. You two, staring into each other’s eyes. Both of you were exhausted, but your mommy was on cloud nine. You absorbed your mommy’s gaze like a wildflower absorbs the sun’s rays and gazed right back. Never making a sound.

If I only knew then what I know now…

The first couple of months with you were quite the roller coaster ride. Not because you were a difficult baby; just because you were a baby. You had a lot to teach us and we had a lot to learn. Your G-Paw and I were surprisingly out of practice and your mommy was just a beginner, and trust me — there’s a big learning curve.

Through all the attempts at diaper changes and people coming in and out and dogs barking and bottles that were just a bit too cold or a tad too warm, you remained calm. Crying only when you were hungry or wet. Never complaining about the amateur way you were being held or cared for. You were so patient with us while we learned how to care for you. Always sleeping best on G-Paw’s chest. I would call you a “soap opera baby” because, just like the babies on TV, you were always so quiet and content. I remember watching those shows when my kids were babies and thought, “That’s ridiculous. Babies are never that quiet.” But you were.

If I only knew then what I know now…

Around 5 months old, you started watching “Sesame Street.” A lot. We had to put a time limit on it because it was just too easy to let you watch it. It would keep you occupied for the whole 30 minutes. Without a peep. You would smile at the characters and even giggle at them occasionally. You would turn your head to follow the TV better than any toy or hand movement or person. We laughed about it and said how cute it was that you loved “Sesame Street” so much.

If I only knew then what I know now…

You started becoming mobile at around 7 or 8 months. You were starting to crawl and pull yourself up. You were giggling and playing and just being an all around great baby. But it was here that we started to notice. You weren’t clapping yet. You weren’t making eye contact enough. You weren’t pointing yet. Something was different.

If I only knew then what I know now…

Over the next year and a half, the light inside of you started to shine brightly in our house. You lit it up with hilarious giggles when we played peek a boo with the stuffed Elmo. You would shriek with delight at the sight of bubbles and slides. You learned to walk and then you learned to run. And climb. Boy, did you learn how to climb. Going outside became an insatiable daily desire. You became obsessed with anything that had to do with the alphabet or numbers. You even learned how to put a whole ABC puzzle together by the time you were 18 months old. We were so proud of you! But you still wouldn’t talk.

If I only knew then what I know now…

Somewhere in there, we took you to see a doctor, and he told us about your autism. At first, we were sad about it. We didn’t know what it meant. We were scared. But soon, we learned how to take care of you, and you worked hard for us. You patiently went to every therapy appointment twice a week. You learned how to use some sign language and point for things you wanted. You started to make a little more eye contact. You learned how to lead us where you wanted to go by grabbing our finger and taking us there.

And you learned how to fly.

You have taught this family more things in these two short years than most people could even conceive.

You’ve taught us to trust ourselves more than we already did.

You’ve taught your mommy that she is stronger than she ever knew.

You’ve taught us that a diagnosis of autism isn’t the end of the world.

And you have taught us all to fly.

And you know what?

If I only knew then what I know now…

I wouldn’t change a thing.

We love you, Noah.

Just the way you are.

Your mommy adores you.

Your G-Paw thinks you hung the moon.

And I think you are just about the sweetest baby in the whole wide world.

And as I listen to your heartfelt, deep down belly laughs coming from the next room because of tickles from your mommy, I know you have so much more to teach us. You have so much to teach the world. And we all can’t wait to learn.

Follow this journey on G-Maw and Noah.

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