10 Kinds Of People You Encounter When Your Child Has ADHD

Although I’m somewhat of an ADHD parent rookie, my husband and I suspected it for years. Truth be told, we were somewhat relieved when we received our son’s diagnosis because we wanted to help him, but nothing ever seemed to work (ADHD parents, amiright?).

The ADHD struggle is real, and parents see things in their ADHD children that other family members and friends just don’t – the daily meltdowns about screen time or cookies, telling your child to put his shoes on five times and then having to touch his shoulder before he even acknowledges your existence, listening to the constant jabbering and questions (okay, I find this ADHD trait adorable and endearing), all the energy … ALL THE TIME, and of course, the constant communication from the school for behavioral challenges.

We know our children best. Period.

However, many of the comments I’ve received about my child’s diagnosis, and during the diagnosis process, have been truly astonishing — and I have three boys so nothing surprises me anymore! Below are the 10 types of people you will encounter when you share your child’s ADHD diagnosis.

1.  The Experts

The experts know everything. I mean EVERYTHING. They have all the answers on how to “cure” your child’s ADHD, from changing their diet to changing schools. They are not teachers, behavioral specialists, or even living with a person with ADHD, but they have no problem telling you what you should and shouldn’t do with your child.

2. The REAL Experts

These are the teachers, fellow parents of children with ADHD, special education instructors and counselors with actual hands-on experience. They only offer help or advice if you ask for it, and you definitely should ask for it. They have great information on everything from different approaches on how to speak to your child and talking to them about their ADHD, to how to work with your child’s teacher and creating a 504 plan. The REAL experts are saviors and if you don’t have them in your life already, find them.

3. The Opinionators

Opinionators have no problem telling you what they think about your child’s diagnosis and if they think your child actually has ADHD or not. You’ll hear everything from “He’s just a normal boy” to “I don’t see it.” They compare your child to other children, and share unsolicited observations — you know, in case you don’t notice yourself (insert eye roll emoji here).

4. The Anti-Medicators 

One of the first questions the anti-medicators ask is “Will you medicate?” If your response is “no” or “as a last resort” they immediately let out an exaggerated sigh of relief and cry out “Oh good.” If your response is “yes” then … run. The decision to medicate or not is a private one, between the parents and their healthcare professional. Kindly butt out, Felicia.

5. The Un-phasables 

If you tell an un-phasable your child has ADHD, they don’t so much as flinch – they don’t look or act surprised, or have any reaction at all. They don’t give you unsolicited opinions or advice but they listen to everything you say, or need to vent about. They are basically ADHD Switzerlands, with comments like, “I’m sure that’s really hard” or “That’s interesting.” If you have a bad ADHD day and need a timeout yourself, call up an un-phasable for a glass of wine – they won’t judge if you call your child an asshole while taking a breather.

6. The Anti-ADHDers

Anti-ADHDers do not believe in ADHD. They believe it is “over-diagnosed” so all children who are diagnosed just plain and simply don’t have it. They actually cringe when you say “ADHD,” like it’s some kind of political debate they disagree with. Some will go as far as actually making you feel like you need to defend your child’s diagnosis. The Anti-ADHDers believe a simple spanking or a better loving environment is all the kid needs.

7. The Hippies 

Cut GMO’s and gluten out of your child’s diet, along with using essential oils on your kid’s butt and his ADHD will magically disappear!

8. The Askers 

The askers are full of questions – how we knew to get our child tested, how the diagnosis process went, what his teacher says, etc. They gather all the information, as they find ADHD and the entire process interesting.

9. The Shamers

The shamers will make mental notes any time you raise your voice, lose your shit, or show the slightest bit of impatience and then suggest ways for you to parent differently. Basically they make you feel like a crappy parent after your worst moments (thanks guys).

10. The Supporters

But then there are the supporters. These individuals never offer unsolicited advice or opinions. They are the people WE NEED MORE OF. They support every decision we make for our ADHD child, because they know that we – the parents – know our children best and will always do what we think is best for them. Their comments bring legit tears to our eyes, because they are what every parent needs to hear, especially on a bad ADHD day.

“You’re doing a great job.”
“We are really proud of the parents you are.”
“We are happy you noticed this (ADHD), and caught it early.”
“That’s great your school is being so accommodating. It sounds like a great school.”
“Please let us know what we can do, or how we can help.”
“I know he is a difficult child, but you are doing all the right things.”

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This Is What Life Is Like In The Grey Areas Of The Autism Spectrum

Last summer, my older son, then 5 ½, went to school. It’s called “ESY” in New Jersey – Extended School Year – and many kids like my boy, who has type 1 diabetes, autism, ADHD, processing disorders and/or learning disabilities attend such programs.

For those who are unacquainted, the primary purpose of ESY is to provide continuity, so the children have minimal regression over the long summer break. It’s not “summer school” in the traditional sense. No new skills are taught, but the previous school year’s skills are repeated, services like speech and occupational therapy are still provided, and for children who need the routine, or for over-extended parents and caretakers, the program is often a blessing.

This year, when we went for the IEP meeting to revise his goals for next year, my son’s [most excellent] team informed us that he didn’t qualify for ESY this summer. Our school district changed the program a bit from last year, and my son had exceeded his expectations for this past school year, so they all felt it would be more harm than benefit for him to attend the program; the recommendation was to send him to “regular” camp with neurotypical kids, perhaps a diabetes camp if it was possible (my boy also has type 1 diabetes).

This is what we’re supposed to desire, right? We are supposed to want our kids to be “typical,” aren’t we? So why was this news giving me such mixed feelings?

In addition to not needing ESY this year, it has been determined that he’ll mainstream quite a bit more this coming school year. In IEP-speak, he has been increased from “less than 40%” of his day to “40-70%” of his day. In addition to his “specials,” for which he was mainstreamed in kindergarten – art, music, library, health, computers, and gym – he’ll be with a regular first grade class for math and science this year, as well. He’ll stay with his LLD (Language or Learning Disabled) class for all writing and reading-based subjects, and social skills. Again, this is great. It’s progress! At least, it’s supposed to be, right? Why don’t I feel more excited about this?

I have no illusions about my son or his abilities; he probably has a higher IQ than me, and the way in which he comprehends the world, when we catch a glimpse of it, is nothing short of incredible to me. It’s more likely that I underestimate him than overestimate him, to put it another way, so I’m sure that, academically at least, he will be fine when September rolls around and first grade begins.

But socially? Without camp, how on earth would I provide the social interaction and regimented schedule he needs, while still allowing for a fun family summer? And what will it be like for him when he integrates into the regular class each day next year?

It’s this living life in the grey area that is so difficult for me. Uncertainty and anxiety are constant states of being in our house, and it gets exhausting. My son has a variety of special needs, all of which work together to make him the individual he is. Every decision we make for him considers multiple levels of functioning, all of which affect the way he learns.

Which aspect do we prioritize, the diabetes or the autism? Well, that depends on the situation; sometimes it’s one, and sometimes it is the other. The trickiest part is knowing when to push him, and when to fall back, because he is very intelligent, and he is perceived as “high functioning,” but on many occasions, that doesn’t matter at all. The difference between him and his neurotypical peers is truly like night and day.

We field a lot of questions and comments from folks who, mostly, mean well, but don’t really get the complexity. For instance, “Oh, he has to go to the nurse for all diabetes care? He can’t do any on his own? My t1 was doing her own finger sticks by five years old!” No, he cannot do it unsupervised. You think we don’t push him enough to take care of his own diabetes? You’re right, we don’t push him at all! He will deal with diabetes his entire life, unless a cure is found, so while he is little, why not let the adults worry about it and lighten his burden a little, mmmmkay?

And then we get, “He speaks and interacts so well, is he really autistic?” He absolutely is, would you like to see him have a meltdown? Since he can pass for normal sometimes, or perhaps behave just a little “odd,” we get, “Maybe he’ll grow out of it, don’t you think? Look how good he is!” Yeah… no. He’ll just learn to mask his behaviors and idiosyncrasies even better as time goes on.

What I worry about the most though, and why I ultimately am glad to have kept him home this one last summer, is what happens when my sweet, sensitive boy becomes the target of a bully? Will he even realize he’s being picked on? It will most likely be from someone he considers a “friend,” because he doesn’t yet recognize when people are being undercover shady. And it’s bound to happen, because, let’s face it, my boy is a funny bunny. He’s weird. We embrace it. After all, I’m weird too, and so is his dad.

How do I protect him from being targeted by some kid whose parents still find it acceptable to use the R-word: while standing on line to get into his kindergarten celebration, someone standing in front of us was looking at the program, saw the listing for the class of only six children, and said rather loudly, “Oh, that must be the retard class.” I mean, really? It’s 2018 and you’re still using that word? The guy was extremely lucky that my husband did not hear him say it, but if parents are saying it, guaranteed some kid is going to say it sooner or later.

In the end, I am exceptionally proud of my son’s accomplishments this past school year, and I’m enjoying getting to “sleep in” this summer. We do some academic work each day, we read a LOT, and I have him at the park or the pool and playing with “normal” kids as often as I can. We’ll prepare him to deal with “normal” kids as best we can, and in the meantime, we’ll hold his hand and protect him from whoever we might need to. Living life in the grey area isn’t any of our strong suits, but it’s where we find ourselves, and even with all the uncertainty, life here is pretty darn great.

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What I Regret About Trying So Hard To Socialize My Child With Autism

When my son was two and diagnosed with mild autism by our developmental pediatrician, our doctor assured us that as he grew, our son would learn how to better socialize. I took out a paper and pen and wrote notes as the doctor spoke: “Cast a wide net. Befriend typical and non-typical children. Join groups and activities with your town and community, as well as others.”

I looked at my son, who barely spoke at the time, and paralleled played with other children without really interacting. Still, he would laugh and smile as he watched them. I bit my lip and sighed, wondering if he would ever have friends.

Sure enough, as if his doctor could see the future, our son did begin to socialize more. In social group therapy, he worked on asking other children to play. He would diligently and carefully state his name and ask the other child theirs. He was proud and excited every time he did it. He derived real joy from playing with his peers.

Once he was in kindergarten, he would come home and list his friends. We noticed that he played and interacted with one other child a lot, but appeared to have a whole group with which he interacted. We were thrilled and wanted to hone and expand their relationships, by having play dates and joining similar activities.

However, we soon noticed that his friends, and one in particular, were not always kind to our son. While they were mostly nice children, they would sometimes isolate, tease, and compete with him. Our son did not know how to handle these occurrences and would feel very upset.

We overlooked it many times as parents, validating the behavior by saying that this is how boys play, or typical kids tease — it always blows over. When our son would tell us he was sad, we would give him tips on how to better stand up for himself when these things happened. We were so concerned with him making and keeping friends that we forgot the most important things — his own self confidence and self worth.

After a particular incident with another child led to ours feeling emotional all day, we sat and had a talk with him. We realized just having friends didn’t mean he was doing well socially, and that it is also about helping him to choose his friends wisely and carefully.

This time, I spoke to him, without doctors, therapists or other children present. I told him a lesson that we both had to learn — that we must never accept a person as a friend who doesn’t make us feel good about ourselves. A real friend plays nicely, shares, doesn’t isolate or upset. It isn’t important to have “a” friend, it is important to have a nice friend.

Soon, instead of coming to me to tell on someone who made him feel sad, he began coming to me to proudly announce he and a friend shared snack.

It is my hope that we can continue to guide him to improve socially and connect with others in a more positive way, and to cast an even wider net.

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What Happened When My Child Saw Me Cry Because of Her

I recently did something in front of my daughter that I swore I’d never let her see me do. I cried. I’m not talking about crying during a sad scene in a movie or because I lost a loved one. I’m talking about crying because of her.

My 8-year old has ADHD (Attention Deficit Hyperactivity Disorder) and she’s had this diagnosis for a little over three years now. While ADHD gives my daughter many advantages (i.e., the ability to think outside the box), it also comes with many challenges. Completing her homework has always been one of them.

My daughter’s school has summer requirements for its students. Every day, my daughter must complete a bare minimum of 30 minutes of reading and 20 minutes of an online math program. There are other recommendations, like writing in a journal and practicing keyboarding, but it’s nearly impossible for a child like mine to be able to handle extra work when she can barely make it through the basic requirements.

I always try my best to make homework easier for her. I make sure she takes breaks, I let her choose the order of her assignments, and I reward her with screen time afterwards. While these do help her, they can’t take away from the tremendous amount of frustration and anger she feels when she is having difficulty with an assignment. Although she is very smart and has been known for seeing patterns and relationships with numbers the average person can’t see, she still struggles with math. And that is exactly what happened with her the day she saw me cry.

We were both sitting on stools in the kitchen and I was letting her use my laptop to work on her math program. She was having a particularly hard time with a math problem and was becoming increasingly frustrated. I was right there next to her on the other stool trying to help her and encourage her. I was there with a piece of paper and pencil, trying to explain the math problem to her in a different way that I thought she’d be able to understand better.

I was doing my best to bite my tongue and remain calm and collected. But it didn’t matter. She wasn’t listening. She wasn’t even on her stool anymore. She was on the kitchen floor, having a full-blown meltdown, screaming that she will never be able to do the math and that there was nothing I could do to help her.

As her frustration and anger levels rose, so did mine. What was I doing there? Nothing I was doing was helping her. She said so herself. I thought about the fact that her doctor and I decided to give her a break from her ADHD medication this summer in order to help her gain weight, since the medication prevented her from gaining weight during the school year. Did I make the wrong decision? She’s gaining weight, but she’s having a difficult time with her homework. Which is more important? 

As all of these thoughts were racing through my mind, my daughter was still having a meltdown. I knew there was no way she’d be able to continue the assignment now, so I told her to go to her Calm Down Area and that we’d revisit the math problem later. But she didn’t want to do that either. All she wanted to do was kick and scream on the floor. I was at a loss. I felt beaten down and hopeless.

Worst of all, I felt scared. I was terrified by the fact that I didn’t know how to help my own daughter. I was scared thinking about what was going to become of my daughter as a teenager and then as an adult. Every part of me felt like getting up and walking away, but I knew if I left that stool, all my daughter would feel is more fear and abandonment. And if her own mother could do that, what would the world do to her?

So I sat there, let my emotions take over me, and for the first time, let my daughter see me cry because of her. Once she saw the tears streaming down my face, her entire demeanor changed. She asked me why I was crying and I replied with the trembling truth, “I don’t know how to help you.” She got up from the floor and held me. Her little voice sadly said, “I’m sorry, Mommy.” I embraced her and together, we cried tears of sadness, frustration, and anger. It was a moment we both will never forget.

By letting my daughter see me cry, something I was so afraid to do, she realized for the first time how much her actions and words affected others. She realized how equally frustrating it is for the person who wants to help her, but can’t because she resists it. She realized how much I truly love her and want the best for her, always. She realized that I will never ever give up on her.

After we talked some more, my daughter got back up on her stool and let me help her with her math problem. She finished her entire assignment. Ever since that day, she has not had a single meltdown during homework. If she begins to feel angry or frustrated, she knows to take breaks. She is learning how to manage her powerful emotions and thoughts, and that’s all I can hope for.

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Please Teach Your Children Kindness When Interacting With Kids On The Autism Spectrum

Recently, we took a trip to the park down the street. My son saw some other kids about his age he wanted to play hide-and-seek with. He asked if he could invite them to play. I encouraged him to do that.

These kids told him they would play. They told him to go hide. He joyfully ran to hide. They counted, but it was just so he would hide and leave them alone. Meanwhile, they were laughing at their “ingenuity” and mocking my son.

I tried to explain to my son they weren’t really playing.

He went back and the scenario played out exactly word for word again.

I was heartbroken at the cruelty of these children. Sadly, I called an end to our time at the park and we walked home.

Some people with autism do not always understand social cues or cannot read facial expressions. I see it as curse and a blessing. A curse when my son misses cues. A blessing if it protects him from cruelty.

Please, teach your children to be kind.

The kids at the park didn’t have to say yes to playing with my son. They could have said they were busy, or that they didn’t want to play. I’m not asking that they always say yes to playing with my son. Frequently, he only wants to play one game and that same game over and over. I realize your child may feel too old, too cool, or just plain doesn’t want to play. Teach them to be honest with my son. But kind.

Kindness goes a long way in this world of ours.

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Why Some Kids On The Autism Spectrum Have Meltdowns After School

Tonight I helped a local group with some autism awareness training. I think it went well. I used the coke can explanation to describe a day at school for Sam. Sam is fictional, he is a 10-year-old little boy, he has red curly hair and a cheeky smile. He is a combination of my own school experiences and those of my children.

The coke can analogy was first described to me by another parent of a child on the autism spectrum a few years ago; it has always stuck with me as the perfect way to explain the way a child bottles up everything and then let’s it all go once getting out of school.

I have seen other people write about it, and this is my interpretation as an autistic adult myself and a parent of kids on the autism spectrum:

The coke can example.

“Come on Sam, time to get up.”

The light streaming in the curtains burns Sams eyes, blinding him.

Sam gets up. Immediately the pressures of everyday life are upon him: get washed and dressed, brush teeth, go downstairs, join the rest of the family.

“Morning, Sam.”

Clothes are scratchy and uncomfortable; they are not comfy clothes Sam would choose. They seem to dig in, or don’t sit right, labels rub and feel different to the rest of clothing, they become an annoying distraction for Sam. Sam tries to eat breakfast but all he can think of is those seams and labels.

Now shake the can!

Sam now needs to find and put on his shoes and coat. Shoes are heavy, they squeeze and pinch, feeling tight over Sam’s feet.

Coats are restrictive, bulky and annoying!

Now Sam needs to leave the house.

Shake the can!

Sam gets in the car. The car is cold, the seats are hard, the car has a funny smell. The seatbelt digs in and restricts movement, it feels suffocating.

Sam arrives at school, he gets out the car, there are other cars, children and their parents everywhere.

Shake, shake, shake the can some more!

So much to see, where should Sam look?

So much noise, did someone say Sam?

Where is that noise coming from?

Sam trips and falls on the steps.

Sam gets up, he feels like running away!

Shake the can some more!

The noise is the ringing bell, Sam covers his ears and drops to the ground slamming his head off the ground! I help Sam up, I hug Sam “It’s OK, you are OK.” Sam is now late for school.

Shake the can!

Sam enters his classroom last, 25 noisy children each with their own unique faces, sounds and smells. Sam’s senses are totally overwhelmed, he covers his ears, shuts his eyes and slams his head off the nearest desk.

A voice is shouting, “Sam, Sam, sit down Sam. Come on now everyone, into your seats. Sam sit down.” All Sam hears is his name. He focuses hard but misses the instructions, he sees the other children sitting down and copies.

Shake the can harder!

Chairs are dragging on the floor, like fingernails down a blackboard, the lights are too bright, the classroom is covered in posters and art work made by children, pencils on paper make a noise only Sam can hear, it is a busy environment full of distractions. All Sam’s senses are overwhelmed. Sam’s eyes and head hurt. Sam wants to run away.

Sam again hits his head off the desk.

Shake the can again!

Sam tries to do his work. Sam doesn’t understand what he is meant to be doing, he couldn’t process all the instructions quickly enough. Sam can’t ask for help, he can’t communicate his difficulties although Sam is verbal, it is to overwhelming to speak in class.

Sam rolls his pencil along the table, mesmerized by the way the light dances along it’s straight edges. Watching the light dance is soothing for Sam, he gets up and walks around, walking is soothing, too. Sam gets told off for distracting the other children, he is told to return to his seat.

Shake, shake, shake!

Break time! Sam is alone, the other children won’t include him. Over 100 children in the playground but Sam feels so lonely, he longs for company. Again Sam is hit with sensory overload caused by the noisy playground environment, Sam covers his ears, falls to the ground and hammers his head off the ground.

“Go play, Sam”

“Play? How do I play? What with? There are no toys” are the thoughts racing through Sam’s mind.

Sam doesn’t know how to play, he struggles with imagination. Play with who? Sam has no friends.

Sam runs up and down, knocking into other children, “ Go away, Sam!” “You are in the way Sam.”

The smell and noise in the dining room at lunchtime causes Sam to retch, he then falls to the ground, hands on ears, eyes screwed tightly shut, slamming his head off the floor, his senses overwhelmed again. Sam barely eats any lunch.

Shake, shake, shake harder.

“Do your worksheet, Sam!”

Gym time. Sam is last to change, it is hard for Sam to change clothes, he is all fingers and thumbs, his P.E. clothes feel different, different materials. More labels. Light shoes that feel wrong.

At P.E., no one wants Sam on their team, Sam can’t hit the ball with the bat, he gets struck out, he sits alone at the side punching his chin.

Sam changes back into his school clothes, again everything feels wrong.

Shake harder, shake harder!

“Come on Sam, everyone else has finished that worksheet!” Sam flaps his arms and stamps his feet. Sam is struggling to “hide” his autism.

Sam wants to run away, he feels sweaty, his heart is thundering in his chest, the classroom is too hot, too loud, too bright, just all too much! Sam sits repeatedly banging his head off his desk.

Sam doesn’t understand. Sam needs to move, to fidget. Sam chews his fingers, the bones in his fingers are deformed from repetitive chewing.

Shake, shake, shake!

Assembly, “Sit down, Sam!”

Sam just can’t sit still, Sam just can’t keep quiet. Too many people, everywhere, it is all too much!

Smash, smash, smash! Sam is smashing his head off the tiled floor.

Sam starts making noises, squealing, howling, feet stamping, arms flapping.

Children whisper.

Teachers talking.

It is all too much, more head smashing.

Sam is crying.

“Sam back to the classroom.” Sam stands up, he doesn’t understand why he has to leave and is guided back to the classroom. Everyone is staring, pointing, whispering, “weirdo, freak, cry baby.”

Sam understands every single insult, the tears fall faster.

Keep shaking that can!

“Sam get your coat and bag.”

Sam can’t find his coat, and what else was he to find….

Sam gets knocked into, pushed out of the way.

Sam returns with his coat, “Sam, where is your bag?”

Sam goes back into the cloakroom, more pushing and shoving to find his bag. Sam’s bag is not on its peg, someone has moved it. Sam is panicking, finally he finds his bag hidden out of sight over by the door.

Shake, shake shake!

Home time!

Sam negotiates his way along a packed corridor full of a sea of moving children. He fights his way through the door outside into the playground to be met by the faces of hundreds of parents waiting to collect their children.

Sam spots me.

“How was your day, Sam?”

Would you like to open that can now?

The coke can effect describes the child who bottled everything up for as long as they could.

This was my own experience of school and the experience of two of my children.

Sometimes, I didn’t last until the end of the day. I had a reputation for throwing classroom furniture out of the way while I made my escape. One of my children who doesn’t know of my behavior in school reacts in exactly the same way.

It is a fight-or-flight reaction — I just had to get out and anything in my path would be met with destruction.

For a child like Sam, you need to find a way to release the fizz slowly.

At school pick up, I minimize communication with the children, welcoming them with a smile, a hug and a high five.

Remember how hard Sam’s day was?

My child like Sam bounces on a trampoline for up to an hour most days. My other child goes for a run. They have to get it out their system, just like I did. These days, I use loud music and long walks when the need to let off steam arises.

If the coke can explodes before you can gently release the pressure, you have to let the tears run their course. It may be a few minutes, it may take hours. The priority is keeping this child safe until the storm passes. Talking won’t work, they can’t hear you during a meltdown. Touching can be risky and lead to more lashing out. All you can do is wait it out, be patient, be understanding.

Once the child is calming down, use gentle reassurance, short sentences.

Never punish a meltdown. The child has no control.

Now move on, be positive and kind. The last thing any child wants is for you to drag up all the triggers and trauma that added up over the day. School is done for the day, leave it there.

Sam and others like him will have to summon up the strength to do it all again tomorrow.

Originally published on The Mighty.

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When Your Kid Is The Only One Not Getting An Award

Last Friday was my son’s sixth grade graduation. The school played a beautiful video comparing the kids’ baby pictures to their sixth-grade yearbook photos, a cruel move that had parents wiping tears and biting back ugly cries. After passing out diplomas, the principal said it was time to hand out the Presidential Awards, an academic achievement award that recognizes students who have maintained a GPA above 3.5 for every semester from third grade to sixth grade.

About a third of the graduating students were called back up to the stage to accept an award. Everyone clapped, and I thought it was over, but then I realized we had only completed the first round of awards. That first group was the kids who had maintained a GPA of 3.5 to 3.74. There were still two other categories yet to be called: 3.75 to 3.99, and then a separate distinct category for perfect 4.0s.

For context, the elementary school my kids attend is known as a choice school. It’s a public school, but it has a focus on STEM (science, technology, engineering and math) and has a rigorous curriculum and various other requirements to attend, like that parents have to volunteer 20 hours every school year. The school receives so many applications annually that they have to select attendees via lottery, and the students, as a rule, tend to be overachievers.

That meant that almost every child in the sixth grade was called onstage to receive a Presidential Award. It was a beautiful thing to see, honestly. A couple of times, when a student’s name was called, a parent would whistle or shout from the audience, “That’s my boy!” It was so sweet to hear the parents’ pride for their kids. The overall mood was jovial. It was hard, though, not to feel a little hurt on my son’s behalf that he was one of the only ones — maybe the only one – not called to receive one of those awards.

My son has loved attending this amazing school, but it’s been tough for him. In the second grade, he was diagnosed with ADHD. We’d struggled since preschool with trying to help him acclimate to a school environment, so the diagnosis didn’t come as a surprise. But it wasn’t until the middle of third grade that we began medicating our son for his ADHD. Even after beginning medication, we had some rough semesters, grade-wise. There were so many teacher conferences, so many tears at night over homework, so many assignments finished but not turned in. So many zeros.

We eventually got Lucas’s medication straightened out, and he’s doing much better in school. In fact, this last semester he got straight A’s for the first time. I’m proud, of course, because he worked his butt off, but that’s not the point I want to make. Even if he’d made C’s, he still worked his butt off.

My point is, kids who work really hard to make C’s don’t get awards. Although I don’t begrudge celebrating a child’s success, I think we are doing a disservice to kids who are affected by disorders that impact their academic performance. We are inadvertently shaming kids who are dealing with ADHD or anxiety or autism or other issues that make school exponentially harder.

When my son came up to me after the ceremony, tears in his eyes because he was sad to be leaving the school, he said, “Mom, I think I was the only one that didn’t get a Presidential Award.”

He noticed. Of course, he noticed. He knows he’s overcome so much and worked so hard to pull his grades up, so, yeah, it was a punch to the gut for him to get left out. My son will be okay though – once his official report card comes in, we’ll celebrate his efforts in a big way.

But what about other kids who have experienced similar, awards ceremony after awards ceremony, year after year after year? If you’re a parent of one of these kids, you know how hard they work. You know how hard you work. You know that persistence and dedication does not always correlate to measurable achievement. You know that often, your child has to work twice as hard as some of the straight-A students just to earn a C.

And you know that often, no one notices.

I’m not here to detract from the straight-A students’ accomplishments or say they are undeserving. These kids absolutely deserve recognition for their hard work. What I am here to say is this:

To the parent of the kid who is trying really hard but not quite measuring up, I see you. I see your kid. I see your struggle. I see how hard you’re working. I see you helicoptering over your child even though that is something you promised yourself you would never do, but you have no choice but to hover because your kid would utterly, abysmally fail if you didn’t. You are trying so hard, and so is your child, and I see you.

Your kid might not get a fancy certificate with a signature stamp from the president of United States, but you sure as hell have my respect and admiration. And so does your kid.

To The ‘Weird’ Girls Who Don’t Quite Fit In

I’ve been thinking a lot this month — about my past, my present, and specifically about my late diagnosis of autism at the age of 34. Looking back, I realized I first started considering the possibility that I could be on the autism spectrum after reading the stories of other women and girls with autism. Since their stories helped me learn more about myself, I’ve been inspired to share my own experiences, in the hope my story might help someone else who has been struggling. So here is my open letter to all the “weird” girls who might have undiagnosed autism.

Dear “weird” girl,

I was once like you.

I didn’t talk much as a kid. Didn’t care to make more than one friend. I was perfectly content playing on my own or just reading. I liked to play with my toys in my own way — I’d arrange them in perfect little rows, or assemble them into static scenes. Sometimes I would be so focused on my reading or toys, I wouldn’t hear my mother repeatedly calling for me. My parents had my hearing checked when I was young. I passed with flying colors, but I still didn’t consistently respond to the sound of my own name.

I was also clumsy and uncoordinated. I burned myself while cooking on a regular basis. I banged my elbows into corners and clipped my toes on the edges of furniture. The clumsiness persisted, even after getting glasses and having my ears checked.

I didn’t “get” other people a lot of the time. Jokes that sent others into stitches of laughter flew right over my head. Practical jokes were the worst. I never felt as clueless as I did when I was the butt of a joke I didn’t understand. I learned to fake it, how to play along until the moment passed. I faked my way through a lot of social interactions and conversations.

As I got older, I lost myself in movies and music, or that magical combination of both: musicals. I would watch Disney movies over and over, memorizing not only the lyrics to the songs, but the dialogue as well. Characters in musicals had clearly defined roles, and they sang explicitly about their feelings. I understood them in a way I could not understand the people around me. I still love Disney movies, cartoons, video games, collecting toys and stuffed animals, and other supposedly “childish” interests. They keep me calm, help me right myself when I’m feeling stressed out. They make sense in a world that often doesn’t make very much sense at all.

I had trouble transitioning from childhood to adulthood. Learning how to manage money on my own, how to take care of myself, how to be successful at a job — it all took more effort than I anticipated, given how easily I had sailed through elementary and secondary school. College was a lot harder, and it took me a few tries to get it right.

These days I struggle at work. It’s hard to talk to new people. I miss social cues. I laugh at inappropriate times, or when I’m nervous, or when I don’t understand something. I’m rude without intending to be. I don’t always pick up on people’s emotions, and when I do, I sometimes struggle to understand why they feel that way. Sometimes I need to be told not only what someone is feeling, but how they want me to respond, how to help them. I have trouble explaining myself and defending myself in conversation. I have trouble keeping my emotions in check.

It’s hard for me to follow conversations with more than one person. I struggle with knowing when it’s my turn to speak. I constantly interrupt others, or walk away without saying goodbye or properly ending the conversation. I find that scripted, predictable conversations work best. I am not a fan of eye contact. I sometimes need specific instructions in order to know how to perform new tasks. Without that guidance, I try to fake it and learn by copying others. I’d rather look things up on the internet than ask someone for help. I struggle with concentrating and organizing work tasks, but I love to catalog and research things relating to my own personal interests.

I like to follow a routine as much as possible. Deviating from it causes me anxiety. It took me a long time to realize how stressed I was by bright lights, loud noises, big crowds, itchy fabrics and foods with weird textures. It’s even worse when I’m sick or tired. When I’m upset, flapping my hands rapidly helps me calm down in a way that’s hard to explain to other people.

These sensory sensitivities, and a lot of other things about myself, don’t really make sense to the average person. People who aren’t that familiar with autism don’t know what to make of it. To them, I’m “weird.”

Maybe you’ve been feeling lately like you’re “weird,” too. Maybe the things people find odd about you don’t match up exactly with mine, but the end result is similar: feeling like you’re alone a lot of the time, like no one else understands what life is really like for you. If so, I want you to know it’s not your fault.

“Weird” girl, I was once like you — and I suppose I still am.

The parts of me that seem so “weird” to others are still there. They’ll always be part of me. But all those weird little traits and awkward moments in my life start to make a lot more sense when you look at them through the lens of autism and anxiety.

I spent three decades of my life wondering what was wrong with me, why I didn’t fit in, why I didn’t act the way other people do. I was so focused on what I was doing wrong that I didn’t notice all the things I was doing right. I constantly forgot that I was smart, that I could be a good problem-solver. That my brain made me think differently than most other people, and that difference could make me more creative. That I am a good writer. That I can be a great listener.

That I am, underneath all the “weird,” still a person. It took me a long time to get here, but I like who I am today.

So if you’re feeling down or stressed out, and you’re worried that your life is falling apart for no good reason, and you can’t figure out why you are so much more overwhelmed by the world around you than everyone else seems to be — don’t fret. Don’t be afraid to ask for help. Don’t be scared to speak to a professional about the difficulties you’ve been experiencing. Don’t be intimidated by the possibility that your brain might be wired a little differently than you expected. It may be autism. It may be anxiety. It may be depression, or bipolar disorder, or a host of other diagnoses. But none of these diagnoses mean that you’re not still you.

You are not wrong, or broken, or stupid. You don’t lack “common sense” or the ability to take care of yourself. You might need some extra supports, but you can learn to manage. You can be a successful adult. You can be a happy, fulfilled person. You can have a life worth living.

Don’t be afraid of finding answers.

Right now, you’re like a traveler arriving at a new destination. The customs might be confusing and unintuitive, the locals might look at you funny, and people may not always understand what you’re trying to say. But once you return home, everything just makes sense. For me, getting a diagnosis of autism was like coming home.

Dear “weird” girl, I hope you find your home someday soon. It’s out there, so don’t lose hope. Keep searching, and one day, you’ll find your people. Someone else who speaks your language, who understands why you do the odd little things you do. In finding them, you’ll find out more about yourself. Things will start to make sense.

It won’t fix everything. You’ll still struggle, and the world will continue to be a strange and stressful place, but understanding why you struggle may make it all more bearable. It can also help you to figure out what to do next, how to better deal with the overwhelming world around you.

You’ll still be that same “weird” girl. You’ll still be you. But you’ll also be something greater. Taking the time to learn more about yourself, and using that knowledge to take the necessary steps to better yourself is one of the best risks you can take in life. So be brave, little one, and let that be your new moniker.

Don’t settle for just being the “weird” girl. Be the brave one, too. An adventurer setting out on a new journey. Your home is out there. Let’s go find it.

Originally published on The Mighty

This Is What It’s Like To Have A Child Who Has High-Functioning Autism

April is Autism Awareness Month and the autism activist in me wants to smother the world in awareness. I follow autism blogs and read about families impacted by severe autism. These families are true inspiration. My side of the autism world is on the opposite end of the spectrum. The so-called “high functioning” autism. While I am beyond thankful for how very far my son has come, high-functioning autism certainly comes with its own challenges.

We are a party of 5.  My husband and I have 3 kids — Sadie (9), Bryce (6), and Lucy (2). Our oldest arrived in 2009 and is your typical firstborn. In the summer of 2011, South Jersey was hit with tornadoes, a derecho, and an earthquake all in the same week. The very same week our son Bryce was born. Coincidence?  I often wonder.

Things were different (not less) from the start. We did not feel like seasoned parents as all our past experience went out the window. Bryce was officially diagnosed with autism at the age of 20 months. This September, he will move to an inclusion classroom setting. We are ecstatic and terrified all in the same breath.

Bryce’s ADOS test placed him smack dab in the middle of the spectrum and I often feel like we are in the middle of both worlds. One side being the autism world, the other being the typical world. Feeling stuck in the middle is a lot lonelier than it looks.

From a distance, Bryce appears to be your typical kindergartener. A few short years ago that was anything but the case. At age two — no babble, no eye contact, no pointing. He was a pro at failing hearing tests. He failed them so often and so well it took a sedated hearing test to tell us his hearing was just fine.

At age three, he transitioned from early intervention to medical pre-school. I can’t talk about his teachers, aides, and therapists without crying. They will always be our superheroes. They helped Bryce tremendously. Words and progress don’t always come to kids on the spectrum. It will never be lost on me that we are LUCKY. But, lucky is not a word synonymous with high-functioning autism. After all, it is still autism. It’s not bad parenting; it’s not a spoiled child throwing temper tantrums. It’s autism.

Bryce looks typical so we get your typical shocked reactions during an excessive meltdown or when he can’t handle a dog barking or when he spins himself into a supermarket display. Warning: Mama bear does surface!

It’s not until Bryce is playing with a neurotypical 6-year-old that the differences become obvious. He likes playing with little Disney figures (what he calls his “guys”). It makes me happy because he seems happy. And for the longest time, he didn’t know how to play.

But most kids his age aren’t playing with Disney guys for hours on end. Last week, the neighborhood kids came by asking for my oldest to play. She declined. I knew Bryce was wishing they would ask him to play.  After all, he is a boy just about their age. They are good kids, and they did ask him to play nerf guns. He pleaded with his words and eyes. My heart said heck yeah, but my brain remembered a similar situation that happened just weeks before. I already knew the ending to this story.

“Let him go, push him a little,” says my husband. I let him go and secretly bribe my 9 year-old to join him (which happens all too often).  I tell him to grab his helmet so it won’t hurt if they aim at your head. I’m not quite sure what he thought, but he certainly was shocked to learn they’d be shooting at him. From there, this story goes south.

He didn’t play. He was sad. I was sad. The details aren’t important. So instead of sports with the neighborhood kids or recreational teams (losing isn’t his forte), we joined adapted soccer. The coaches and staff are amazing, but I feel stuck. Do I try recreational soccer again, knowing he can’t handle it, or do we stay and be the MVP of special needs soccer?

I don’t know the right answer, there probably isn’t one. I also know this isn’t a third-world problem, but this is high-functioning autism. And again, I’m stuck somewhere in the middle.

Susan Seabrook

Bryce tends to get made fun of for doing “baby things.” There was a time when I told my best friend to remind me of something very important when this happens. Remember the times I used to cry because he didn’t know kids were laughing at him. Take me back to those painful moments when I had to put on my sunglasses to hide my tears. I try and keep that in mind when Bryce gets made fun of.  I really do.  But, it’s hard.

He takes a while to process things sometimes. He feels, more than anyone I know. The good and the bad. It’s during those bad times when my older daughter seems to help him best.  She’ll make up a scenario about how someone made fun of her and how she dealt with it.  My little girl.  Nine years old, acting 19.  I watch, appreciate the amazing young lady she has become, cry more, and grab some sunglasses.

Bryce’s toddler years were stolen because of endless therapy and school, and Sadie missed her innocent adolescence because she is and will always be his person. When she grows up she will be the best speech therapist around! Heck, she’s been training for it her whole life. Damn you, autism!

My family is beyond appreciative for the autism community we’ve found. We have an amazing local support group that provides advice, activities, a sounding board, and most importantly, LOVE. When Bryce had meltdowns and no words – I felt relaxed at these special needs events.

Now sometimes I feel guilty. I wish others had the same story and luck we had. Because I’m no fool — at the end of the day — it’s luck. Being stuck in the middle can feel isolating.  There are absolutely worse cards to be dealt, but I’d like the world to know high-functioning autism is still no royal flush.

Susan Seabrook

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When My Nonverbal Son Asked For Mom And Dad

As Zachary gets older, his developmental delays become more noticeable between him and his peers. The fact that he has no words is the biggest one, which is also sometimes the saddest for us. We wonder if we will ever hear that little toddler voice of his and if he will sound just like Landon, our 2-year-old son. Every time I hear my name called from Landon, my heart melts and aches all at once. It is a bittersweet world that my family lives in. How can I really enjoy those moments when I’m still longing for that moment with Zachary?

Besides having autism, Zachary also has childhood apraxia of speech (CAS). I often find that people know less about apraxia than autism. Zachary finally desires to communicate with the world, but with CAS, he has a motor planning issue that prevents him from saying a word or sound consistently. It is a neurological disorder. The brain knows what it wants to say but can’t make the physical movements with mouth to make the correct word, or sound. There is basically a disconnect with the brain and the mouth.

As parents, we decided to start off with some sign language for Zachary. He knows two signs: “more” and “all done.” When he first learned those two signs, it was pretty life changing for all of us. Zachary doesn’t even know how to shake his head “yes” or “no.” It has always been a guessing game, and we can only hope we are guessing most of his needs and wants correctly. At least when he learned “more” and “all done,” we were given a glance into what he wanted and needed at the time.

Within recent months, Zachary has been using the sign “more” for “I want.” When he is eating a cookie and he signs for “more,” I know he wants more cookies. But when he points to the bathtub and signs “more,” I know he means “I want a bath.” Those are two different needs, so we knew we needed something more for him to express himself.

There are so many options out there, which is great, but overwhelming. As a parent, there is always some self-doubt when making decisions from the moment you conceive that child. What is your birth plan? Will you breast feed or formula feed? What bottle will you use? What school will your child attend? What after school activities will they do? It never stops, but as a special needs parent I feel like some of our decisions are life altering and time is always everything. What will happen if we wait too long? What will happen if we rush this? How long is this waitlist for? Time is a battle within itself.

This year, my husband and I, with much deliberation, chose to make our own communication book with Zachary’s teacher. I say much deliberation, because deep down there is a part of us that thought if we just wait a little bit longer maybe he will just talk. However, how much longer should Zachary not be able to have voice? It is not fair to prevent a better form of communication, because I’m still holding on to a prayer that seems to go unanswered.

We took real pictures of items that he uses every day, like his favorite cookie, specific brand of juices we use, his favorite toys, even pictures of our backyard, bathroom, and his bedroom. The book is filled with about 20 pages of tiny laminated pictures that are on Velcro on each page. When we first started this book he was only able to look at 6 pictures at a time. Just scanning a book, a picture, the television is a triumph in itself. Zachary is now able to flip through pages, and pick what he wants and brings me the picture.

He caught on so quickly that it makes me sad to think how long he just sat within his own mind, never being able to get his needs across. My husband and I, as do all parents, do the best we can. I would like to think that I guessed Zachary’s needs mostly right these past three years. However, now that he can pick what he wants to eat, what he wants to play with, and where he wants to go, I don’t think I would have picked half the things he gives me on daily basis.

Recently, during home therapy, while my husband and I were in the other room, Zachary was crying with his ABA therapist. It is five o’clock at night, and the sun is getting lower. Normally, during the week my husband wakes Zachary up before the sun is up. He is off to school for the day, which is filled with lots of other therapies and activities. He takes an hour long bus ride there and back, and comes home to a couple more hours of therapy. Somedays, like anyone else coming home from a full time job, Zachary just wants to rest. That is where we are today.

Today is also different than other days. Today Zachary has a communication book. He flipped through his book and came to the last page in there. It has pictures of me, my husband, his brother, and his aunt. He first pulled off my husband’s picture and then my picture and handed them to his therapist. Zachary had used his communication book to ask for his parents for the first time.

He is 3 years old. He could have asked for anything in this book: ice cream, or to play on his swing. Instead, he asked for mom and dad. He has the same needs and wants as any other child, and sometimes you just want mom or dad. Sometimes, as parents, we need to be validated as well. Although Zachary will reach out to us and come to us when he needs us, it is not the same when I know he is trying to communicate like you and I do everyday. So in this moment, my family will bask in this bittersweet world for a little bit longer today.

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