8 Ways to Help Your Special Needs Student Succeed This School Year

On the drive to school the first day, Slim looked at himself in the rear view mirror and adjusted his new glasses.

"I look good. I really look like I'm in junior high."

I smiled at him and continued to drive through the intersection toward school. In the drop off lane, he bolted out of the car faster than he ever had in the first seven years attending school. I barely had time to say, "Be good, be kind, work hard," my mantra for the last several years.

"I love you! Have a good first day!" I shouted at his back as he bounded down the stairs toward the entrance reserved specially for the seventh and eighth graders.

I honestly never thought I would see this day. This day he made his way through that entrance, wearing the gray polo of a junior high kid instead of the white polo of an elementary kid, actually excited about what lie ahead for him.

We were going to switch him to a different school. Unsure that he could keep up with the rigorous demands of our private school without full-time autism support and without other kids and adults who just "got it."

I prayed for a sign. I prayed for any sign that would indicate he'd be okay if we switched him to the public junior high school.

I should have known, though, that I never get the signs I want.

But I do get the ones I need.

Teachers who "got it," kids who had his back, plans in place, and friends who would move with him to the public high school. All signs pointed to staying put for junior high.

Over the summer I watched him mature before my eyes: taking the dog for walks, making friends in the neighborhood, teaching himself to play golf. I was excited for his teachers to see the maturity, too.

But they never called to meet before school began. And I got worried. I doubted the system. I thought we had to start over from square one.

I held my temper and judgments as I responded to an email. I put a big smile on my face for Open House night. And once again, my fears were quelled.

All six of his teachers were kind. They had heard about him and were versed on the strategies that had been used in sixth grade. The PE teacher and the music teacher already had something set up for him. Everyone had welcoming smiles. My stiff smile became a real one of relief.

It's been four days, and he's already had to visit with the principal about blurting out. I know there are 166 more long days ahead of us, some complete with notes home, or emails, or the dreaded phone call. But we'll make it. You know how I know? We all have three things in common: we care about Slim, we work together, and we have faith in the system.


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Navigating any year in school can be difficult when your child has an IEP or special accommodation plan. As they move up the ladder and have more teachers and more classes, it can get really scary. And as parents, we can get downright tired of all the meetings and phone calls and broken links in the chain. But there are definitely things we can do to make the year go more smoothly for everyone and save headaches down the road. 

1. Communicate, communicate, communicate. Don't wait for the teacher(s) to make the first contact. Reach out via an email, letter, or in person. The beginning of the year is crazy busy for teachers and they have so many students and parents to get to know. Let them put names to faces and introduce yourself and your child, as well as tell them something about him.

2. Be patient. It may take a week or so to get plans and behavior charts up and running again. Be sure to check in with the teacher to make sure plans have been put in place.

3. Be supportive at home. For a child who is struggling either academically or behaviorally, home and school plans need to go hand-in-hand. Share with the school what has worked at home, and reinforce both positive and negative consequences from school at home.

4. Find your "person." This is someone who has worked with your child in previous years and knows him well. It could be a special education teacher, a therapist, a PE teacher, or anyone who will work with him year after year. Establish a good relationship and use that person to help in the transition to the next grade. They can share what works and doesn't work with new staff members.

5. Keep an open mind and trust the process. If this year's teacher wants to try something new, hear her out. Most teachers are highly trained and experienced with requirements for continuing education. Maybe a fresh new strategy will work.

6. Have a positive attitude. I know sometimes it can seem like everyone is "out to get" your child or you may feel like they think you're a bad parent; but trust me, they don't. Their job is to help your child while reserving judgement.

7. Know your rights. You know that paper you get every year entitled, "Your rights in special education"? Read it. Learn it. And use it if you have to. Here is a quick and easy to read guide outlining those rights.

8. Chat with other parents of special needs children. You are not in this alone, though it can feel like that sometimes. You can commiserate, share ideas and strategies, and share successes and wins with someone who gets it.


By staying as involved and positive as you can, you are one step closer to ensuring the success and happiness of your special needs student.

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Do you have any other advice to add? Share it in the comments or on Facebook. We'd love to hear your wisdom. 

And how about all that homework?? Read what parents AND teachers really think about it right here. 

Here's what it's like to take an autistic child to summer camp

Dana Rothstein | Dreamstime Stock Photos

You found a camp that you thought would be perfect for him. You hoped it would be perfect for him. After all, it's a subject he loves. After all, HE could be running the camp.

So you took a deep breath and signed him up. You filled out all the paper work. Under the medical information section you wrote high-functioning autism and ADHD. You even listed his medications even though he wouldn't be taking any of them at camp. You wrote it on the calendar, and it sat there like a ticking time bomb weighing heavily on your mind, on your heart.

Camp week arrived, and you spent the night before preparing your child. This is what time we're getting up, this is what time we're leaving. The camp is three days long. Here is what the camp is about. Here is how you appropriately get attention. Here is how you contribute information. Remember how we socialize with other campers? Stay on the conversation web. Here is what time Mom will be back to get you. 

He doesn't sleep at all that night. He is nervous, anxious, excited. He spends the entire night awake thinking, going over situations in his mind. He is exhausted in the morning, and you are nervous for him.

When you drop him off you linger to see what he will do, but he disappears into the classroom without saying good-bye. You go home and wait nervously, hoping - praying - that he has a good day. That the camp counselors don't ignore him. That he doesn't wander off. That the other kids are nice to him - or at least not mean anyway.

When you arrive to pick him up, he is sitting under a table reading a book. He sees you and runs to you shouting, "Finally! Get me out of this train wreck!"

You weakly smile at the counselors and other parents as you and your child walk away. That was rude, you mutter through clenched teeth at your son. He explains to you that the kids were being really loud and wild while waiting to be picked up, and then you understand the comment and his placement under the table.

The next morning when you drop him off, the camp director knows who you are right away. This makes you nervous. Did your child stand out that much yesterday? And so you worry all day.

When you come back, the director says Oh, Mrs. Frog. Your child certainly knows a lot about our subject! You tense. Is this a good thing or a bad thing? He has such enthusiasm. He is just a joy to be around. You exhale and smile. It was a much better day.

So the third day, you hardly worry at all until you come back to pick him up and he is under the table again, this time crying. And this time you are facing the camp director with a different look on her face.

Your child has punched someone in the shoulder. You are appalled and upset. You just want to get him out of there, but he won't come out from under the table. The camp director explains that the other boy said something about your child's mother, and secretly you're proud of your son for standing up for himself - and you!

You know that a detailed discussion is going to upset him more, so you ask him if he knows he made a poor choice. He weepily says yes, and you say Okay then, let's move on. 

The camp director says it's no big deal, but you can't help feeling like you sense relief when you answer her that no, your child isn't coming back to camp next week.

Just like in camps past, you're not sure he got anything out of it. Did he even have a good time? Was it even worth it? You want him to have experiences like other kids do, but is it worth it to worry all day and put him through the anxiety and stress of the situation with counselors who don't know him and don't know how to make him feel comfortable?

But then finally his week comes. The week you've both been waiting for all summer long. HIS camp. A camp just for him and kids like him. The only camp you've signed him up for that he has actually been telling people about.

A camp for kids with autism.

You walk in the first day and the director is there to greet him. She doesn't attempt to touch him or shake his hand but has a huge warm smile for both of you. He blurts out a question, which she patiently answers. Then she tells him about the schedule for the whole day. It includes things like yoga break, fine motor time, and executive functioning skills and warmth spills over your mama heart. Your son says Okay, cool, and starts exploring the room and picking things up off the floor.

He likes to do that, you say. And the director smiles and says Of course, we'll talk about that, too. 

You see other counselors showing other campers quiet places they can go if they need to, and you walk back to your car knowing THIS WILL BE a good day.

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Every summer, for years, I have struggled over what activities to place my child in for his break from school. I know that it's important he have "regular experiences," but also that handling some of those regular experiences is difficult for him. Even though I hate to use labels, there are times his label has helped him and his camp counselors have a more positive experience. 

Read my latest on She Knows about how his label has saved some of his summer camp experiences, as well as a review of The A Word, a new show about autism premiering this month on the Sundance channel. 

Leave me a comment below about how you handle summer activities with your autistic child or connect with me on Facebook. 

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I'll let my child with autism dance with sticks

ID 40416516 © Ampack | Dreamstime.com

My friend talked me into running a 5K. I've always wanted to run a 5K. I can run three miles. I used to be a pretty good soccer player and ran all the time during games. 

Honestly, though? I hate running. Like, I feel like it's the most boring thing I can think of doing and I'd rather be doing many other things. But, everyone does it. It's the thing to do. Running clubs and Mud Runs and Turkey Trots and all kinds of other races. Yep, I really should be a runner. 

The other day at the gym, I was running around the track attempting to get my three miles completed. As I was huffing along, I saw that a class was going on in the aerobics studio. The ladies in the class were doing some dancey routine and tapping sticks. It looked like fun, and I wanted to be dancing with sticks rather than running.  

But I kept running around and around. Maybe if I had different shoes or maybe if I had a better playlist on my iPod I would enjoy it more. Maybe if I just thought like the Little Engine: I think I can, I think I can, I think I can. Maybe I will learn to love it and the high will come like it's supposed to. 

But all I can think about is going to that class with the dancing and the sticks. Why do I want to make myself fit something that's not for me when I would rather just dance with sticks? Maybe I wasn't meant for running; only dancing with sticks. 

It makes me think about Slim. It makes me think about how all his life, we've tried to make him run alongside everyone else: Be quiet. Stop pacing. Stand still. Don't talk to yourself. Talk about something other than Star Wars for a change. Act appropriately. Use proper social distance when talking to someone. 

You know what? Maybe he wasn't meant to run either. Maybe, grabbing sticks and dancing to the beat - or to his own beat - is what makes him the happiest. He is the happiest when he is in his own world, talking to himself, pacing, thinking about Star Wars. 

There's nothing wrong with that. Some people love that about him. True, some don't, but I see those people as the people who are running just because they think they should be. They think there is a certain way to approach the world that must be correct because that's how everyone else is doing it. 

Maybe, if we would stop running, grab some sticks, and listen to the music, we could learn to appreciate another way of doing things.

Yes, every young person needs to learn how to assimilate into society - that's just the way it is. But we celebrate and encourage the special things about typically developing kids, That will make you more marketable. Yet we try to completely change what is special and unique about kids with Autism (Is this 'expected or unexpected' behavior?).

Some companies are realizing that people with Autism are a huge asset to their businesses. They celebrate and value what makes them unique and extraordinary. Those who are able to work are finding more options available to them. 

But those whose Autism is more severe are finding a serious lack of services available to them once they reach adulthood. Even though Autism was identified almost a century ago, we have made very little progress in helping adults live, work, and thrive with Autism. 

Some parents of autistic children believe that we don't need more autism awareness - we need more acceptance and action. I can understand that. Every time September rolls around, I feel the same way about promoting Children's Cancer Awareness. 

But I do think we need to continue promoting Autism awareness. You can read here about why I think so. The more we learn about something, the more we can figure out how to accept it, how to find answers and solutions, and how to live with, love, and appreciate those with Autism. 

Slim's teachers and I will still continue to guide him in skills and strategies that will help him to see his way in the world (can't every child benefit from that?), but we're also seeing less of his behaviors as "wrong" (read about that here) and more about being the delightfully unique person he is. 

We're over expecting him to run all the time, and we're more frequently just watching him dance with those sticks. And it's getting easier to join him. :)

Let's connect on Facebook and chat. 

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Why can't I stand up for my kid?

photo by stockimages

It was a totally harmless comment. We were at the zoo and Slim, my twelve-year-old with ASD, was super excited running from tank to tank at the aquarium talking very loudly.

He is normally a very loud talker anyway.

A mom walked by with her two daughters and said, "Oh my god that kid is loud. I thought you girls were loud, but that's loud!"

She was in front of me long enough for me to say, "He has autism. He is still working on appropriate voice volume."

But I didn't say it. Instead, I sent dagger eyes that only her younger daughter noticed, and my tongue twisted inside my mouth, and I stayed mute until she was far off down the hall, and I wanted to run after her and grab her and tell her what I wanted to say anyway.

But I didn't.

And I mentally kicked my ass for it all day afterward.

What she said was true and something that a lot of us moms have probably commented about other people's children. What bothered me more than her saying it to her daughters (as if saying something hurtful is okay as long as it is true), was that I didn't stand up for him. I didn't give an explanation of why he was being loud.

But is being loud okay because you have ASD? Would I be giving him an excuse not to fine tune his social behavior?

It's a slippery slope for me. No doubt, I hate conflict. I avoid it like the plague. I hate to argue, I hate to try to prove my point, I hate to talk over people or be louder or smarter or more convincing than someone else. What if I'm wrong? What if the person never sees my point of view? What if the other person is louder or smarter than me? What if I cry? 

I hate the tightness in my throat, the pit in my stomach, the way my heart races, and the sound of blood pulsing in my ears.

But I hate even more that I am not teaching my sons by example.

Hubby and I always tell the boys to look out for one another, stand up for their brothers, and speak out if someone is mistreating one of them. How will they know how to do that if they do not see it happening? Actions speak louder than words. 

We are having a problem with some of the neighborhood boys not being nice to Slim. I was outside one day when I heard the boy across the street say, "No, Slim, you can't play. Go home, Slim."

Shocked and unable to think how to react, I looked at the ground and pretended to feed the dog a treat. Why couldn't I say anything? Is it because I have to be neighbors with his mom for the next two decades? If my kids are being jerks, I would appreciate knowing. I would THANK you for telling me. How are his brothers supposed to stand up for him when his mom can't??

There are many times I stew over comments about his behavior, I keep quiet to a teacher I should speak up to, and I shoot angry daggers at mean kids and rude adults.

I'm too emotional. And when I'm upset, it comes out wrong. One day last summer, we were at the swimming pool. Slim was excitedly running from one group of kids to another, talking loudly and trying to make friends.

A group of boys about his age were laughing at him, and one started saying, "What? I can't hear you." Every time Slim would start to speak again, this boy would yell, "What? I can't hear you!"

I watched over the top of my book, my eyes tiny burning slits under my sunglasses. I waited for Slim to speak up for himself. I waited for his brothers to come to his rescue. None of this happened. Finally, I put my book down and walked over to the boy.

"Would you please stop being mean to my son? He is just trying to make friends." The boy lowered his eyes to the ground, but a smirk remained on his face. "He just talks loudly sometimes, and you are being rude."

He apologized, and I scolded him in my pissed-off mom voice. I never told him that Slim has autism. Why should I have to? Why should that be an excuse for anyone to be nice to him? Would it even have made a difference?

I certainly didn't like the way I spoke up that day, but at least I did it. And honestly, I need to keep doing it. I need to keep doing it until I find a way that does not have tears behind it, that is not scolding or angry or accusatory. A way that doesn't make excuses, but explains and teaches, empathizes and understands.

Maybe I'm no good at standing up for myself, but I'll be damned if I don't teach my kids to stand up for themselves and each other.

What advice do you have for me? How do you stand up for your kids without going all "mama bear" or crying or losing your sh*t? Please tell me in the comments. 

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How to do New York City with Anxiety, Autism, and a Hurricane

I have to admit, the first time I visited New York City I didn't love it. It was the mid-nineties and I had driven up from Washington, D.C. with two of my friends. We were just going to stay a night. My friend told our married friend to leave her wedding ring behind because "people in New York will just rip it off your finger."

So I was already pretty scared of the big city before we even got there. We went to a nightclub where security personnel frisked us at the door and tore through our purses like a junkie looking for a fix. Being "Nebraska Nice" (seriously, that's our motto), I thanked her. She yanked me back and growled, "What did you say?"

"Thank you?" I repeated weakly, and she shoved me on into the club where my friends and I spent the rest of the time clinging to each other and hugging walls while watching transgender women cut in line for the bathroom.

I think we only stayed for 30 minutes before leaving and contemplating getting apple tattoos (thank god we didn't) and visiting the Statue of Liberty before we headed back to D.C.

Fast forward eight years. 9/11 had come and gone - but was still fresh in our minds - and Hubby and I were headed there with two babies in tow to spend two years of our lives in a place we'd never seen with no one we knew. I didn't want to go.

I ended up loving it.

Not actually Long Island where we lived - sorry Long Islanders - because there were lines and cars and people everywhere. And they were blunt and not very friendly, and I am a talker and I like to hold doors for people and tell them to have a nice day and everyone looked at me like I was crazy when I did that.

But Manhattan was different. People were cool and classy and super helpful when we were trying to get our double stroller up the steps at Penn Station. As I walked the route from Penn Station up Fifth Avenue past the Empire State building and Macy's, crisscrossing over to Broadway and Times Square and back over to Rockefeller Center and ending at Central Park, I felt like a native New Yorker. And I loved when people would visit us so I could show off my city skills.

Ten years later and here I am firmly entrenched back in my Midwestern life. I never had the opportunity to return to NYC, but I always wanted to. My two oldest boys have seen pictures of themselves as babies in New York, and I tell them stories all the time. They have been begging me to go back "someday."

Well, someday finally came last October, and I booked a trip for my two oldest boys and me to go on a "big boy" trip to the City. We were beyond excited. The only thing that could dampen our excitement was Hurricane Joaquin.

New York experienced one of the warmest and most beautiful Christmas Days ever, but the whole time we were there in October it was freezing cold and pouring rain. I was so disappointed, but the boys were troopers in their rain slickers and boots. We saw our former home on Long Island, the Statue of Liberty, Central Park, Times Square, Rockefeller Center, and the 9/11 Memorial and Museum in addition to eating great pizza and sweets from Serendipity.

Besides, the rain afforded us the opportunity to return to the hotel each night, snuggle in our king-sized bed, eat snacks, and watch old episodes of Full House. If it hadn't been for all the rain, it would have been the perfect trip.

Neither boy complained, and Knox actually got teary-eyed and sad the last night stating, "Mom, I don't think you're going to get me on the plane tomorrow. I just love New York so much." It was validation for all the weeks I spent worrying whether the boys would have fun.

I have to admit, I also worried A LOT about how Slim would handle the trip. He tends to wander away in crowds and is inappropriately social in many situations. I spent a lot of time coaching him on how he should act and respond to people. I was pretty sure I had it covered.

However, as is usually the case, he had it covered himself - by being himself. I'd love for you to read the rest of the story right here on She Knows. I'm proud to be sharing our story there, a story of how my son taught me a lesson rather than the other way around.


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Twelve

He forgot his glasses . . . again. He forgets his glasses a lot. When I prompted him to get them, he turned those stunning blue eyes to me and smiled.

His eyes were the second thing I noticed about him. After three months of wondering what his cleft lip would look like (and being pleasantly surprised that it wasn't as horrible as I thought it would be), I noticed his eyes: light blue, striking, all-knowing.

Once he was home from the NICU, I noticed that he was all round, smooth, creamy cheeks, knobby upper lip, and eyes. He was darling.

I would hold him and his eyes would search the corners of the room. "Do you see the angels?" I would whisper to him. I was convinced that angels had to be watching over him. He was so quiet and peaceful.

Until night. Then he couldn't sleep. One night, Hubby and I were up at 4 a.m. cleaning behind our refrigerator because Slim was still wide-eyed and awake (we FINALLY made him "cry-it-out" at eleven months, but a lot of good that did).

There would be tougher times: surgeries, physical therapy, speech therapy, temper tantrums we couldn't explain, odd behaviors, and diagnoses. Maybe those were a relief.

This year he turned twelve on New Year's Eve. I said to him as I gave him his birthday hug and kiss, "Now Slim, you can't get any bigger than this. You must stay like this forever." I am able to comfortably hug and kiss him without bending over at all. His head nestles in a perfect spot near my shoulder.

He pulls away. "But Mom, growing is a natural part of life. I can't just STOP growing." And he walks away.

Ever the realist.

I look at him a lot with new eyes these days. He's different. Well, he's always been different; but he is different.

He eats his food with the gusto of a tween who is, in fact, still growing. He makes polite and pleasant conversation at the dinner table as opposed to his brothers' arguing and refusal to eat what's been put in front of them.

When he is asked to help, he says, "Okay," and helps. No matter what it is - taking out the garbage, buckling his brother's car seat, walking the dog, or emptying the dishwasher. He helps without complaining. Oh, he still may need reminders to follow through with some of the tasks, and he probably always will; but the boy gets stuff done.

We see a boy from his class at the sledding hill. They chat and hang out a little. When it is time for his friend to leave, Slim says, "Hey, we'll talk about this at recess next week, okay?" While I love how normal that looks and sounds, I know there will be no such discussion at recess.

A group of teenage girls walks by with pink sleds and matching hats and gloves. Slim is quick to notice and say, "Hey, ladies! It's a great day for sledding." They smile and 'awww' at him. He walks away with the swagger of someone able to pull off wearing this shirt:

Sometimes I pretend he doesn't have Autism. Sometimes I hold on to those typical moments so tightly and expand them in my mind. I imagine that he is a handsome young freshman, asking a girl to a dance and going with all of their friends. I even go so far as to insert his brother into the equation because, after all, there is no celebrating any of Slim's milestones without wondering how Joey would be celebrating them and what he would be like as a twelve-year-old, too (as long as I am fantasizing about things).

I get an email from the music teacher that contains Slim's audition time for the junior high play. I am shocked, but not at all surprised. "Why didn't you tell me you signed up to audition?"

"I wanted it to be a surprise," he answers with a big smile and those light eyes twinkling.

I'm not sure if Joey would have signed up for an audition, I'm thinking to myself as I drive Slim to school. "It's so awesome that you're doing this. And you're not even nervous!" I look at him in the rear view mirror.

"Well, I am a little nervous." There it is again: normalcy. Typical behavior.

In so many ways, I think we lucked out. We have this amazing tween who is sweet and loving and confident and helpful and cherishes his parents.

And in so many ways I know the road ahead of us is only going to get harder as he struggles to accept his autism and what that means for him in relationships, education, jobs, and society.

I've wanted to freeze time a lot in the past week. The times when he stands side-by-side with one of his brothers, emptying the dishwasher and talking about Star Wars or Minecraft, laughing at inside jokes.

When he and I walk the puppy together and talk about nothing and everything, I want to keep walking until we can get to a place where his differences don't matter. Where they don't even exist.

I get an email from the music teacher that contains the cast list. I scan it, preparing to be disappointed.

But there is his name:
Old man = Slim Glow

My heart leaps and tears spring to my eyes. He needs this. I need this.

If he were typical (normal - blah, what IS normal??), I'm not sure he would have even tried. But what I am sure of is that he walked into that room, quirky as all get-out with those glasses slipping down his nose, and they saw something in him.

He gets a chance. His chance to shine, and I'm hoping that everyone else sees what we have been seeing lately: this wonderfully sweet, delightfully quirky, typically atypical twelve-year-old boy who has no place to go (despite his mom's best efforts to impede him) but up and up and up.

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Here's the deal about childhood cancer and autism

The first words out of my mouth after the doctor told me Joey had a tumor were, "How does a five year old get a brain tumor?"

But sadly, it happens. It happens to children younger than five. It happens to babies. Some babies are born with cancer and other terrible diseases. 

But why? And how? Most people never even see it coming. One day you're at prenatal water aerobics class, and the next day you're on your couch bawling your eyes out to your mom over the phone because you've just been told something is wrong with your baby.

And all the doctor can say is, "Sometimes it happens."

Sometimes it happens. And most of the time, we don't know why. Or how. But dammit, we do know that things happen for a reason, so we must find out why. It's human nature to believe there's always a reason. Whether that reason involves science or divine intervention, we all seem to be in one camp or the other.

So we pray and read the Bible. Or research and read medical reports. We talk to people who are like-minded in order to add fuel to our theories. Then we make our conclusions. And we stand by them NO MATTER WHAT because, after all, there has to be a reason. 

We put ourselves into two opposing camps, opposite sides. The Sharks and the Jets. East vs. West. Vaxxers vs. Anti-Vaxxers. SAHM moms vs. Working Moms. Men vs. Women. Blacks vs. Whites.

Someone has to be right. It's not right if no one is right. 

There's a third camp, the rebel camp. They refuse to believe either theory. They will not take sides. Their explanations are simple:

"This is just the way things are." 
"He was born with this."
"I love her for who she is."
"We are all doing our best." 
"There is no right answer."

The message is beautiful, embraced, shared, shouted from the rooftops - YES, YES, acceptance is King! It's the only answer!

And then we go right back to blaming each other.

For the measles. And peanut allergy reactions. And racism. And dog poop and cat fur and stealing someone else's place in the parking lot at pick-up time.

I'm sure it's always been this way - parents judging parents, people hating and resenting other people for their beliefs and actions.

But it just gets to be so much, don't you think?

We live in the information age. Because we know so much, we think we should have ALL the answers. But we are actually afraid of answering the biggest most important question: What if there is no answer? 

What if no one is right, and we're all just speculating?

Sure, a lot of our lives have been tested and quantified and hypothesized and we can definitively say what the right answer is. Last night, Knox was studying times tables and there was doubt in his voice every time he gave an answer.

"Are you asking me or are you telling me?" I would say.

Slim chimed in more often than I would have liked him to and blurted out the answers. "The theory is that Knox needs to figure these out himself, " I said, trying to sound smart and authoritative.

"Math facts aren't a theory, Mom," Slim stated. "They're facts." He punctuated the word "facts" with a "DUH" just like tweens are so good at doing.

He had a point. Some things we just know because they are proven and no one would ever bother to argue over whether seven times eight is really fifty-six or not.

Because it doesn't matter. It's not sexy and controversial and proving it wrong isn't going to win you any accolades or fame or make your blog post go viral.

image by Vlado

Here's what I think I know about childhood cancer and autism:

We've experienced both in our house, and they both totally suck fat disgusting maggots. Both, while seemingly empathy driving, are lonely as hell to go through because no one understands them like you do. Unless you seek out a group; but even then, no one has your exact same experience. And after all, it's exhausting enough just focusing on your own experience.

They are complex and often misunderstood. I still don't really understand either of them. While I can't speak with certainty about what caused Joey's cancer, I do know what caused Slim's cleft lip and palate and his ADHD and his autism. A gene deletion. Because of his birth defect, he has been poked and prodded and tested and studied and YAY, we get to know why our kid is different. We get an answer. 

But you know what? That answer only leads to more questions. Why does he have a gene deletion? How did he get it? Did Joey have one, too, that was known to cause cancer? Was this because they were fertility babies? Was it because I fed him too much non-organic milk and carbs or red dye #40? Or was it really caused by vaccines and I was just too stupid to do research before giving them to my children? 

Believe me, I don't need any other person to make me feel guilty about anything. I can do that just fine on my own.

We survived childhood cancer and the death of someone we loved. It was hard, so incredibly difficult; and it will be for the rest of our lives. Most days it feels like no one understands, but we are making it through to the other side.

We are living with autism in our house; and it is hard, so incredibly difficult and lonely, but we are managing it because we love our son. I don't think any GOOD parent, any truly loving person can say they love their child any less because of a disease or disability. And no matter what their stance - pro or anti vaccine or stay home/work away/free range/helicoptering/breast or bottle fed would ever seriously wish a terrible disease or affliction on a CHILD just because we don't happen to agree with how their parents are raising them.

So here's the deal about cancer and autism and the measles and birth defects and lice and the freaking stomach flu that just won't go away: sometimes we know how kids get them and sometimes we don't. We can take our knowledge and do the best we can to make decisions that jive with our faith and beliefs and morals and conscious, and we can love our children as best we know how. We can share our facts and information with others because that is our right in this society.

But it is also our responsibility to speak and act in the best interest of others as well. None of us is an island entire of ourselves. We live here with everyone. We must be kind and considerate and think of how our actions and words are affecting other human beings before we put them out there. We are seeing less and less of that in our world, and that makes me sad for my children's future.

The real deal about childhood cancer and autism is that they have made me less willing to fight with people over whether they feed their kid organic food or eat at McDonald's, whether they vaccinate or not, or co-sleep or take their kid's puffy coat off every time they put him in the car. Childhood cancer and autism have taught me that no matter what you do, what decision you make for your child, there is always a greater force at work that seems to say, "But anything can happen at anytime when you least expect that it will."

Childhood cancer and autism have taught me to simply forge ahead and do the best that I possibly can for my children because at the end of the day, that's the only deal that matters.

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We Can't Look Back, Only Ahead

I will never forget sitting at my desk in my office at the University staring at the ultrasound pictures of my first two babies. Baby A had such a perfect profile, but there was something off about Baby B's slightly sideways profile.

We would later learn that Baby B would be born with a cleft lip and palate, something that we much later learned was caused by a deletion in one of his chromosomes. I beat myself up for a while for not pointing out my suspicions to either my husband, an oral surgeon, or my OB/GYN.

But what would it have changed? Nothing.

Our beautiful little Baby B would still have been born with a complete bilateral cleft lip and cleft palate. Looking back would have done no good. Only looking ahead would help him . . . and us.

Sometimes I feel that way about Slim's autism diagnosis.

By the time he was four years old, we noticed some strange behavior. He would begin every day by running in circles around the house. Or he would be watching television, get excited about something, and would have to run laps around the house.

There were the plastic play spoons he would always have to carry and his obsession about sharks. There was the way he would walk the perimeter of a room at a party or a new Gymboree class.

There was the way that he would memorize and parrot back commercials, television shows, and books. The way that he didn't really interact with other children his age.

And there was the way that he didn't really hug you; he just "leaned in."

He was enrolled in an Early Childhood Special Education Preschool program with other children who had speech issues for various reasons. Some had autism. I didn't want to believe that he had autism. After all, he talked to us and other adults all the time, he looked us in the eyes most of the time, and he didn't have some of the other severe behaviors that autistic children had.

But I asked anyway. I asked the preschool teacher and the pediatrician and the speech teacher. Then I asked the kindergarten teacher and the first grade teacher. Everyone said no, he's not autistic.

Though it was the answer I wanted to hear, something kept nagging me. Every time he said something that we didn't know how to answer or had a meltdown about something that we didn't have a strategy to handle or every time my heart broke watching other kids faces as they looked at his strange behavior, I thought: This isn't fair to any of us. 

They all said no until one day we accepted yes and they agreed. And we were relieved.

Only now I am mad and sad and upset. I am mad that no one saw it sooner. I am sad about all the time that has been wasted on the wrong kinds of therapy and treatment plans and all the times his Dad and I have yelled at him for being HIM. I am upset at myself for not demanding it sooner, for not "Google-educating" myself on how to better handle some of his quirks a long time ago.

Looking back, I wish we had started autism therapy so much sooner. Maybe things would be different. Maybe they would be better.

Slim knows that he has autism, and he has been reading up on it. He probably knows more about it than his dad and me combined. In fact, he said something very profound the other day about it and let me share it on Facebook.

He's eleven, and he talks of acceptance - something his fortyish-year-old mother cannot do. In the struggle to accept what is,  I must place myself firmly in the present with my eyes to the future because those are the only things that I can change. I can work on those, make those better.

April is Autism Awareness month; though some people would prefer it to be called "Autism Acceptance Month." That makes sense to me. I believe every parent in America knows what autism is and what the characteristics are. We all trained ourselves to look for those characteristics in our developing children.

We also all know an adult who is a little odd, but we never knew why. According to autismsociety.org, more than 3.5 million Americans live with an autism spectrum disorder, and that it is never too late for an adult to be diagnosed with ASD. We often look at people we think are strange and talk about different things and want to distance ourselves from them.

I want to share a story with you. My sister-in-law works on the campus of a major university in our town. She was walking across campus the other day in a hurry to get to a meeting. As it was a gorgeous afternoon and she is such a friendly person, she saw a young male student on his way across campus as well and commented to him about the lovely day.

And this young man stopped and began to tell her many details about the barometric pressure in the air and the exact weather patterns that aligned to make this a perfect weather day. She contemplated smiling and moving on as he was talking; but then she realized that she was looking at our very own Slim, a mere decade into the future.

So, meeting tardiness be damned,  she stopped, turned to the young man, and really listened to what he was saying. He stopped himself abruptly and said, "Oh, I'm not supposed to go on and on like this. You must have somewhere to be." She smiled and said she'd love to hear more about something he was obviously so passionate about.

And there we had a glimmer of Slim's future. A look ahead, past acceptance and straight on to what things will look like once his therapies get in place.

No use looking back. We can't change that. We can only look ahead and have hope for good things in the future - learning, practicing . . .

. . . and accepting.

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No, He's Not Autistic. Only, Yes he is.

Autism is something that happens because of vaccinations.

Autistic people are like Rain Man.

Autism is over diagnosed.

Autism only happens to other people's kids.

Your son can't be autistic. He's so friendly.

*          *          *

I remember when I first saw those car magnets that were multicolored puzzle pieces. I knew they stood for Autism Spectrum Disorder awareness. Which bugged me. Everything was Autism. Have a weird kid? Diagnose him with Autism. Don't have a name for what is going on with your child? Throw her under the umbrella of Autism. Doesn't everyone know someone who is a little weird? Won't look you in the eye? Has odd social skills? Why is it all Autism all of a sudden, is what I used to think.

But the more I saw those puzzle piece magnets, the more I thought about my own child and what a puzzle he was. Such a unique child. No way to describe him. I began to wonder if maybe he would fit under the umbrella.

But I asked his early childhood special education preschool teachers, who worked with children far more severe than Slim. "Oh no, they said, "we have kids who are way worse than he is. He is not like them at all."

But what about the way he insisted on carrying the same set of orange spoons with him everywhere he went? "Other kids do that, too," someone told me.

What about the way he memorized songs and cartoons, books and commercials, and repeated them all day long? "You used to do that, too, Kathy," my mom told me.

What about the way he walked the perimeter of a room during a party and never engaged in a conversation until he was ready to tell someone something? Then he talked "at" them and walked away. "He's just getting comfortable. At least he talks to people. Autistic kids never talk to people."

I asked. I asked the pediatrician, the kindergarten teachers, his speech teacher, anyone and everyone who worked with him. They all said, "No, he's not autistic."

The other kids loved him. They thought he was funny the way he talked about sharks all the time and knew everything there was to know about China.

But he had no real friends, he didn't get asked on play dates. People looked at us weirdly. He couldn't stay focused during a swimming lesson or golf lesson or tennis lesson. Other people who didn't know him said he was Autistic.

And it broke my heart. And made me mad.

But it also made me wonder, "If they know, how can other people not know?"

Things got harder as he got older. There were behaviors at school and at home that we didn't know how to deal with. He wasn't getting along with his brothers or understanding consequences or transitioning easily into school. He "leaned in" rather than hugged.

I used to think that because of his birth defect, he was getting all the therapy he would get if he had a diagnosis anyway. I didn't want him to have a "label."

But, I began to think, if that label could help him, maybe he should have it. It was nothing to be ashamed of, right? If he could get training and therapy that would help him assimilate more easily, but still keep his wonderful uniqueness, that would be a good thing, right?

But even a doctor who specialized in Autism was stumped as to whether he was or wasn't until he finally said he was. Slim was ten years old.

And then we met some other families in social skills class who talked about their Autistic sons, and things became clear: they were like Slim. They had trouble making friends and sleeping and understanding consequences and they knew everything about something, too.

We finally understood it and accepted it and were okay with it, this high functioning autism. His quirkiness had a name.

And listening to the other parents, I finally understood that he wasn't weird - he was unique and special and awesome and wonderful and interesting. And we wanted him to be the best uniquely specialized, awesomely interesting and wonderful person he could be. He just needed more help than some people do.

But in telling people about his social skills class, I had so many other moms tell me their child could benefit from knowing those skills, too.

Which makes me think that people with autism aren't so different from the rest of us after all. Don't we all have our quirks and preferences? Don't we all have things with which we struggle?

Is Autism over diagnosed? Under diagnosed? I don't know. But what is becoming clear is that there are not enough services and opportunities for these kids to fully become who they are. And it makes me sad.

Because who they are IS this wonderful multi-colored puzzle, full of interesting ideas and complexities that most of us will never even know.

Is he Autistic? Yes, he is. And it makes life so much more interesting.



I'm linking up to Four Plus an Angel's "What does your Autism look like?" series. If you have a story to tell, head on over and add your link. If you are visiting here from there, let's connect on Facebook and keep in touch. I'd love to hear your story in the comments.

Around the Pond with the Frog~May 2014 (Plus Mom's Summer Essentials)

This post contains affiliate links for which I'll receive compensation if you click them and buy something. 

We're knocking on summer's door here. I know some of you aren't out of school yet, but my boys have been out since May 21st. We've been at the baseball field and the pool and the zoo.We're hitting the ground running, my friends, and it's gonna be messy.

I've put together a list of summer survival essentials for Mom that will keep you going through all of summer's activities:

1. A tinted moisturizer with an SPF. You have to love a product that pulls triple duty. With all the kids around clamoring to go places, you'll barely have time to comb your hair, much less apply any makeup. Try Laura Mercier Tinted Moisturizer. I got this little beauty as a sample, and I love it! Not only is it oil free, but it gives just the right amount of color needed to look natural, but not too made up. It's the perfect price point to try it out.



2. A tinted lip balm. Summer outings are not really the time to display a bold lip, but a mom's gotta have a little color, right? Try Burt's Bees Tinted Lip Balm. They're all natural, super moisturizing, and come in lots of pretty summer colors. I think my favorite has been discontinued, though (sad face). It was called Tiger Lily, and it was a nice, sun-kissed orangey color. I might try the Honeysuckle next, as it looks similar.


3. Waterproof mascara. There is never a day that I don't curl my eyelashes and put on mascara, even when I'm going to the pool or gym. I have such short, barely there eyelashes and teeny, tiny eyes that it's a must. I definitely have my favorite mascara, but a brand that you can never go wrong with is Maybelline. It's been one of the top mascaras for decades. Try their Lash Discovery Mini-Brush Waterproof Mascara. It stands among the more expensive ones as one of the best.



(For more summer time make-up without the huge price tag, go visit my gal Frugie of Frugalista Blog. She's got you covered - in more ways than one.)

4. A spray or bottle tan and sunscreen. Seriously, I cannot emphasize this enough: protect your skin. As a person who used to get blistering sunburns every time I was in the sun as a child, I use copious amounts of sun screen now. With skin cancer being the most common form of cancer in the United States, we need to start being more careful. Whether you like lotions or sprays, whether you are naturally pale or have olive skin, there is a self-tanner out there for you. And if you like spray tans, check around for specials. Some salons will even text clients when the day is slow and offer cheap sessions just to generate business. Go fake or stay home!

5. A bathing suit you look and feel great in. It breaks my heart when I hear women say they refuse to get in a bathing suit during the summer. Every year, I look around the pool and sure enough, there are women with kick-ass bodies in bikinis. It makes me feel fat and gross. But, there are so many body types and shapes. The women who look good are the ones who are wearing appropriate suits for their body type, and they are having fun and feeling confident. Those last two points are the most important, but the hardest for women to accept. It's just all in what makes you feel comfortable - bikini, tankini, one piece, swim skirt. Just find what works for you and own it! Check out ModCloth's line of suits for every body and find something that's right for you. Your kids will be delighted you are playing in the pool with them.

6. A list of free or inexpensive activities and places to take the kids. Kids want to be constantly on the go. Keep them moving, if only for your sanity! Check out Kids Activities Blog for everything from chore charts to crafts and games and learning activities. Many movie theaters now have reward programs and $2 - $5 movie days - great for those rainy or sweltering hot days. How about the Kids Bowl Free program? You don't have to be a pro bowler to participate. Even our two-year-old bowled the other weekend - he just used a little plastic dinosaur ball roller thingy to help him (he even beat one of his brothers' scores!). Take a tour of parks in your town and check out hydrant parties. Get creative. Save money anytime you can so when something special comes along, you can splurge. (If you're local to me, check out this page for great ideas.)

7. Your favorite inexpensive wine or summer drink.  I have found the perfect inexpensive drinkable wine. I love a good Pinot Grigio. Whole Foods has one called Quail Creek for $6 a bottle. If you buy 6, you get 10% off. Stock up, Mamas!

8. A great maxi dress or other go-to outfit. Something that is cool, comfortable, and looks great is a total score. I love both the color palate and price point of this maxi-dress from Forever 21. 

Tell me in the comments what some of your favorite summer essentials are.

Finally, you're going to need some great things to read this summer, too. Be sure to check out the hilarious, snarky, and sometimes sentimental anthology I Just Want to Be Alone featuring yours truly. It's nice for car trips or pool trips when you might only have a short block of time to read one or two of the stories. Check out some of my other summer reading recommendations here.




You also need to know about Mamalode. I really love that website. Not only do I write twice a month for them, but some of my favorite bloggers do as well; and I have found amazing new voices through them. Check out my two latest posts here and here. 

Lastly, in case you missed it, here is something new I will be writing about. I think one of the best and worst things about parenthood is that there is always something - good, bad, new, different - we discover while raising our children. They always keep us on our toes. 

Happy summer everyone!!