Embracing Neurodiversity

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EMBRACING NEURODIVERSITY

A Compassionate Guide for Parents of children with Autism & Adhd

WRITTEN BY ALICIA TRAUTWEIN COPYRIGHT @2017 THE MOM KIND Themomkind.com 1

Embracing Neurodiversity By Alicia Trautwein

Table of Contents

Prelude…… pg.2

Introduction……pg 6

Why would you want to “cure” autism?...... pg 9 What is Neurodiversity? ...... pg 10

Embracing Neurodiversity? ...... pg 13

What is Autism? ...... pg 21

What is ADHD? ...... pg 25

What to do after a Diagnosis? ...... pg 28

Explaining Autism to your child? ...... pg 34

Empowering your child to share their diagnosis on their terms...... pg 40

Is it wrong to be sad about my child’s diagnosis? ...... pg 44

Conclusion...... pg 48

Connect with The Mom Kind ...... pg 51

Prelude:

Embracing Neurodiversity is a book that derives from our own experiences. I first set out sharing our journey via our blog, The Mom Kind. With the realization of the lack information out there, it became clear that this concept needed to be offered as an all in one resource to families everywhere!

I never thought growing up, that I would one day become an advocate for special needs. After our two youngest were diagnosed with autism just a couple months a part, my life's purpose was finally made clear to me. I found myself front and center in bringing awareness to autism and teaching neurodiversity.

There are many websites and books that tell you about raising one child on the spectrum. There are a few that explain neurodiversity, all be it in an overly clinical fashion. Yet almost none exist on raising multiple children on the spectrum or teaching families to embrace neurodiversity!

Having a neurodiverse family comes with its own set of dynamics, routines, ups and downs to figure out. Every day is a new adventure for us. Within our family of six, we have the following diagnosis: Autism Spectrum Disorder, ADHD, ADD, Bipolar Disorder, General Mood

Disorder, Anxiety, and Speech Delay. As you can see, we overly qualify as a neurodiverse family!

Now imagine if you even have a fraction of those recently diagnosed in your home? It can be very overwhelming, maybe you are going through that right now. That’s why my website and this book exist. As an ongoing resource for families in the same boat.

Whether you read this all in one setting, or you read bits and pieces while hiding in the bathroom away from you children, my hope is that is not only brings you information, but comfort that you are not in this journey alone! Please, if you ever have any questions or need to vent, reach out to me! I seriously love connecting with my readers and covering ne topics based of their thoughts! I look forward to connecting with you soon!

Yours Truly,

Alicia Trautwein

Embracing Neurodiversity

“When you’ve met one person with autism, you’ve met one person with autism” – Author Unknown

Neurodiversity is not a brand-new concept, yet I knew nothing of it until my two youngest children were diagnosed with autism. Even autism itself, I knew very little about when it comes to the grand scheme of things. Now I find myself front and center with not only the concept of neurodiversity, but teaching others about it to.

If you’ve made it this far into this book, I can reasonably assume you have recently discovered the concept of neurodiversity. Simply put, neurodiversity is the most amazing word ever brought into my vocabulary. When you are done with this book, it will be the same for you!

Chances are, you may have already been scouring the internet trying to find out everything you can about autism, adhd, or neurodiversity. You have probably found a ton of basic information on the first two, and very little on the third.

Thankfully, a lot that you have found on autism/adhd will probably have been empowering. Some of it might have been depressing, other things may have made you down right angry. I get it. It was in those feelings that led me the discovering neurodiversity and realizing that I already embraced the concept within my everyday life.

Though I embraced this concept now known as neurodiversity, many do not. I do not believe that it is because they are against neurodiversity, autism, adhd, or any other neurodiverse mind. I truly believe it is because of a lack of knowledge. How can you embrace something you know nothing about?

Why would you want to “cure” autism?

Never once have I thought of trying to “cure” my children of their autism or adhd. The purpose of gaining a diagnosis was to provide them with the proper resources to be successful in life. Through therapies, educations, and medication for co-existing diagnosis. I fully admit that the concept that someone could even separate autism from the person is very abstract to me, and unrealistic.

With our son, there has never been a moment in his life where we didn’t believe autism existed. Whether you call it intuition, God’s intervention, or something else, I just knew. So, the concept of trying to separate our son from autism just sounds absurd. He is the most awesome little guy I have ever met. (Note: I may be slightly biased here, lol!) His quirks and bluntness are what make him unique and amazing.

With our daughter, she was eight by time we knew she had autism. We had known something was

10 different about her. Funny part was, it had never once crossed anyone’s mind that she was autistic. Her uncle is autistic, and her Nana didn’t even realize it. Autism is extremely different in girls, but that’s a whole other book!

Anyways, she had been seeing doctors for over three years by time we found one who told us she had autism. Once we received that diagnosis, it just made sense. Her love of art and creating things, her lack of understanding of sarcasm, her goofy quirky personality that makes anyone smile. It’s because autism is a mark of her genetic makeup and who she is. Once again, it never crossed my mind to try to “cure” her autism.

Autism is just as much a part of who they are as their hair color and eye color. Sure, would life be easier on them if they didn’t have any “differences”, probably. That’s just not the reality though. Autism is a part of who they are and it gives them some awesome strengths that many don’t have! So why would you want to “cure” the autism from them?

I have always known that the way I think is different than most. I see a lot of things as “black 11 and white.” My brain has always worked much like a puzzle. I come across as bossy, blunt, and harsh at times. I am also very loving, considered highly intelligent, and very kind. It was through researching autism and neurodiversity that I realized I myself am on the autism spectrum. So, it kind of makes sense how I don’t understand why you would want to “cure” autism. It also makes sense on why I am much more inclined to not only embrace neurodiversity, but to explain it to others.

What Is

Neurodiversity?

Neurodiversity, is the shortened term for neurological diversity. This term is the diversity of the human mind and all variations of cognitive functioning. This covers Autism Spectrum Disorder (Asperger’s, Autism, PDD-NOS), Attention Deficit Hyperactivity Disorder, Bipolar Disorder, Dyslexia, Dysplasia, and others.

In Layman’s terms: We all know that skin tone, hair color, and eye color are all normal variances of people. Just like biodiversity, and like cultural diversity, neurodiversity is an acceptance that all neurological status are also normal variances. It is about accepting our differences, and finding ways to work together.

Neurodiversity Movement

The Neurodiversity movement is an international civil rights movement that helps to promote self- advocacy of neurodiverse individuals. The largest influencing group of this campaign is the autism rights movements. The Neurodiversity Movement was started by autistic individuals who stood to oppose the idea that autism and other such disorders are something to be cured.

Those who advocate for neurodiversity work to have neurodiverse individuals involved can live their lives as they are instead of changing to societal norms and ideals.

Neurodiverse Families

The core focus of neurodiverse families is to celebrate the strength and abilities of each family member. Though there are families that contain primarily neurotypical individuals and one non- neurotypical, it is nor the majority. Most families that have one neurodiverse family member, normally have others as well (sometimes with very different diagnosis!). Let’s use our family as an example:

“I was diagnosed with Bipolar disorder and recently discovered I myself have Aspergers. My husband was diagnosed with ADD as a child. We have four children in our home. His oldest has been diagnosed with bipolar disorder. Our oldest together is ADHD, our middle daughter has Autism and ADHD, and our toddler son has Autism. We are a VERY neurodiverse family”

Embracing Neurodiversity

Parents and Caregivers who embrace neurodiversity can stop looking for a cure or reason, and start working on encouraging their children strengths and help balance working with the weaknesses. Instead of having your child conform to other’s standards, you’re able to help them achieve success in their lives.

Many neurodiverse children (and adults) are reminded so often of the limitations surrounding their diagnosis. An unintentional outcome of this is these children rarely get the chance to achieve. When you are told what you can’t do, you stop listening and sometimes stop trying to do what you’re capable of doing. Once families embrace neurodiversity, they’re able to let go of the disease/disorder mindset and focus on the abilities.

Giving up the mindset of looking for a cure does not mean you are giving up on your child! Instead, by looking at the world through their eyes, you are able to help them even more! You would be amazed at how much my children have taught me about emotions and conversations simply by seeing things from their perspective!

Neurodiverse Individuals: Changing the World, For the Better

You may have heard of Temple Grandin before now, but there are many in history that had recorded autistic and adhd characteristics long before these became diagnosis. Albert Einstein was one of those such individuals. Hailed as one of the great scientist of modern history, Einstein was said to have difficulties with social interactions, school, and tactile sensitivities. Other’s suspected by historical documentation to have had

Autism are the likes of Michelangelo, Amadeus Mozart, Nikola Tesla, Marie Curie, and many more! Imagine if someone had tried to “cure” any of these greats? Our world would be extremely different from where it is now!

Now that you have a full understanding of neurodiversity, we need to go over some basics on autism spectrum disorder and adhd. Whether you have recently been diagnosed with autism, in the process of searching for a diagnosis, or just learning how you can help neurodiverse individuals, education is always the key.

Just as we learned as children ourselves

“Knowledge is Power!”

What is Autism Spectrum Disorder

(ASD)?

In the United States, it is said that 1 in 68 children are diagnosed with autism. With those type of stats, it is important that awareness is spread. The best way to bring awareness is by education. Whether you are directly affected by autism or not, it is important information to learn. Awareness brings acceptance.

Autism is a bio-neurological developmental disorder that typically starts before age 3, but can be (and often is) at older ages. Autism symptoms can vary from person to person, as well as the severity of the symptoms. All persons with an autism diagnosis will have some varying degrees in the following three areas:

• communication (verbal & non-verbal) • relationships – Struggling with relating to others & their environment • lack of thought & behavior flexibly

Note: If you notice any of these red flags, please contact your pediatrician or family physician as soon as possible. Early intervention is key. Only a licensed professional can give an autism diagnosis.

Autism Symptoms in

Infants and Toddlers

• No big smiles or other warm, joyful expressions by 6 months • No back-and-forth sharing of sounds, smiles, or other facial expressions by 9 months • Does not answer to name by 12 months • The is no babbling or “baby talk” by 12 months • No pointing, reaching, or waving by 12 months • Has no spoken words by 16 months • No meaningful two-word phrases (non-repeating) by 24 months • ANY REGRESSION OR LOSS OF SPEECH

Autism Signs and

Symptoms

• Extremely Intense Emotions • Speech delay and, or learning disability • May not want to be held/touched/cuddled • Avoidance & sensitivity to noise and sound • meltdowns inability to calm down 22

• Twirling and spinning of self and objects • Social & emotional Immaturity • Lack of or struggles with empathy/sympathy • Difficulties falling and staying asleep • Anxiety / Depression • Clumsy, constantly getting bumps and bruises. • Poor Muscle Tone (i.e. Not being able to walk regular distances without exhaustion) • Problems Playing with Others, appearing “Bossy” or “Controlling” • Improper relationships with peers, acting like an adult towards other children or adults • Inflexible Emotions and behaviors Can’t Let Go of Issues • Problems getting and keeping friends • Inconsistent Eye Contact with others • Extreme intensity of interests • Lack of Coping Skills struggling with unexpected transitions • Struggles with conversations, conversations are very one-sided • Robotic voice, changes or lack of changes in tone of voice • Persistent repetition of words or actions • Impulsive, lack of impulse control

What is ADHD

Attention-deficit/hyperactivity disorder (ADHD) is a condition that makes it hard for a person to maintain attention, causes hyperactivity in some, and impulsive behavior. Much like autism, most diagnosis happen in childhood but can be diagnosed later in life.

Attention-deficit/hyperactivity disorder symptoms affect three different areas which include behavior, mood, and cognitive skills. They can include:

Behavior: Hyperactivity, Irritability, • Fidgeting, Aggression, Easily Excited, Impulsive, & word or action repetition. • Mood: Anxiety & Mood Swings, that can include anger & excitement • Cognitive (brain): Being absent minded, not being able to keep focus, forgetting easily, short attention span, and problems paying attention. 24

ADHD has been medically accepted as a neurological disorder that cannot be cured. Unlike autism in which medical professionals are still searching for a cure.

What to do after an

Autism Diagnosis? 26

The question I am asked most often by parents is what to do after a diagnosis. Once your child receives a diagnosis, you are given all this information from doctors. While it is valuable, its overwhelming and doesn’t always apply to everyday life. You need to learn how to function. You have just been given an additional role on top of parenting. You are now an advocate for your child’s needs.

To make it a little easier for you, I have compiled my top eight most know tips for what to do after a diagnosis. These are all the things I wish someone would have told me!

Ask for help

For some parents and caregivers, this one is easy. For me though, it is so hard to ask for help! I want to do it all myself, but have learned that is just not possible. You are not any less of a parent because you asked for help. If you need help, ask someone to babysit other children during appointments, help you during therapy and doctor 27 appointment, or anything at all. Seriously, remember that it’s okay to ask for help!

Keep a detailed Calendar

Whether it is the google calendar in your phone or a full planner, keep it with you and use it often. You will wind up with a ton of appointments with different doctors and therapist. It is very easy to lose track of all these or double book. I use both methods. I have a planner I carry in the diaper bag that I use for everything. In the evening (once everyone is asleep and there is some quiet) I go in and add appointments into google calendar so I have an actual alarm go off. This has been a huge help! Let’s face it, no one wants a missed appointment fee!

Don’t be afraid of the diagnosis

This one is huge. Your child is the same sweet child you gave birth to. The same child that walked into that office without a diagnosis and came out with one. Your life will change some, but now in a positive direction. That diagnosis will help your child (and you) get the resources they need to thrive.

Connect with other parents

As parents with autistic children, it is very easy to become reclusive. Disconnecting with the world around you are quite the opposite of what you want to do though. If you can get into a local group, that is awesome. However, sometimes physically getting somewhere can be difficult. For that reason, there are a ton of support groups online and through Facebook that you can join. You can ask questions, read other parents stories, and make new friends from wherever you are.

Educated yourself

You are your child’s best advocate. Learn everything you can about autism. Books, trusted websites, your local school district, and the doctor’s office are all great sources of information.

Take advice from the doctor, not your in-laws

Your family means well, but they are not the experts. Down the road, suggestions are great. As of now, don’t be afraid to tell friends and family what you actually need. Let them know you need their support in following the doctor’s recommendations.

Christmas & Birthdays are hard!

Our first diagnosis was two weeks before a birthday. The other was two weeks before Christmas. I say this from experience, birthday’s 30 and holidays are hard! The noise, the new sites, and wrapping paper everywhere will likely trigger a meltdown from your child. Family will buy gifts that your child has no interest in and your child may have no interest in opening presents. Make sure to have a calm place for your child to go and unwind when they get overwhelmed.

Make time for you, your spouse, and other kids

This is one of the most important. An autism diagnosis (or two) comes with its fair share of stresses. Though you need to focus on helping your child with autism, you also need to keep your other focuses on tract too. Continue building your other relationships, showing your other children just as much compassion, and take care of you. If you do not take care of you, then you won’t be able to focus on anyone else.

Explaining Autism to the child with Autism

When our daughter was diagnosed with autism, we let the school and family know. We had already been through one diagnosis with our son, so most everyone already understood what an autism diagnosis meant. We started therapies to help her learn to cope skills and understanding her own emotions.

Fast forward to two months later. When talking to my daughter about her emotions, it dawned on me that I had forgotten to explain autism to the most important person of all, her. With our son only being two, there has been no need yet to explain his own diagnosis to him. Our daughter however, needed to understand her diagnosis so that she can embrace it and accept it for herself. It is after all, her journey in life.

Explaining it at their level:

Our daughter is nine now, but emotionally is more around five or six years old. When I tried to explain it at her level, I forgot to speak to her about it at her own emotional age. This is very important to do. Using words that are out of their reach, or concepts that a neurotypical (someone without any diagnosis) person would understand it, will almost be guaranteed to end in a meltdown. Let me explain from experience:

During the process of explaining her diagnosis to her, our nine-year-old daughter went into a complete meltdown. I felt awful that I was the cause of such sad melt down. She literally hid under bed, crying unconsolably for almost an hour.

Once she had calmed down, we talked about how she was feeling. Since we had been going to therapy to work on coping skills, we used some of these techniques. She began to try to tell me the words that were lost in her head to begin with, that had caused the meltdown. Those words still chill me to the bone.

“Because you said it wasn’t going away.”

There it was. For two months, she had thought that it would go away. She thought it was nothing different than strep throat and that the counseling was the medicine to make it go away. I had forgotten to explain it at her level to her. This is a mistake I hope I can prevent other parents from making.

After that revelation, we started over on explaining it all. I was honest and told her I was

34 sorry that I made a mistake by not explaining it better to her. Honesty is key, and when your children see you own up to accept your own mistakes, it builds trust and character.

After explaining autism, we also explained the difference between disease and disorders. She is much happier ever since I explained the difference and reminded her that it wasn’t a bad thing at all. We talked about the both the positives and negatives of autism, but made sure to end in a positive. Always, end in a positive!

Since our daughter also has ADHD, sometimes she has random thoughts she burst out. After that big discussion, she had a rather cute outburst. She proclaimed, Since I am growing up to be a scientist, I will discover a cure to get rid of all autism!

“Since I am growing up to be a scientist, I will

discover a cure to get rid of all autism!”

This proclamation made me smile and giggle a little, but also reflect. It was in that moment that I realized something monumental in my own mind set. I don’t want my children “cured” of autism. They were born with it, which means without the autism, they wouldn’t be who they are.

Without autism, she wouldn’t have the longlasting childhood beliefs of all things magical nor her amazing art skills. My son’s huge, loving personality wouldn’t have been there to completely change who I am as a person and change how I parent. My life wouldn’t be the same, and that wouldn’t be good at all!

Empowering your

children to share

their diagnosis on their own terms

After her proclamation, she asked “If there isn’t a cure, then why do I have to go to counseling.” We talked about how the counseling is there to help her become the best her. To be able to understand how her own mind works, and learn how to take on the world in a way that benefits her. We talked more about how Autism isn’t something you catch, but a word to describe how your brain works.

Recently, I was blessed enough to over hear the most adorable conversation. There is neighbor girl that lives behind us who is around six years old. Our daughter has made a great friend in her and I couldn’t be happier. This little girl happened 37 to be over playing and they had included the two- year-old who also has autism. This was their conversation:

*Our son started hand flapping out of excitement over PJ Masks coming on the television*

Friend: Why does your brother do that?

Daughter: He has autism.

Friend: He has au..tis..sm?

Daughter: Yes, he has autism and so do I.

Friend: So, you both have it?

Daughter: Yes

Friend: So, you shared it with him? Daughter: No! We were born with it. It just who we are and It doesn’t go away. It’s actually pretty cool.

Friend: Oh, ok. Why are we watching PJ Masks? Isn’t that a baby show?

Daughter: No, anyone can watch it. *The girls sit down for 5 minutes to watch pj masks*

Daughter: Let’s go play outside

Friend: ok

Teaching your child to embrace neurodiversity also empowers them. When they don’t see their diagnosis as a problem to get rid of, neither will their friends. Our daughter soaked in everything I explained to her about autism, but she also didn’t need all the information to be able to explain it to others.

Just as simple as that conversation between friends was, she explained autism as just a normal part of life. She wasn’t one bit ashamed by her brother’s hand flapping, and even felt empowered to say that she also has autism. Though she doesn’t yet know the word neurodiversity, she happily lives it daily.

Is it wrong to be sad about my child

having autism?

Absolutely not! When your child is conceived, you paint a picture in your mind of what life will be. Football games and homecoming queens, you’ve made this image in your head and that diagnosis may have shattered that image. It is ok to be sad over that lose. Just remember, you

40 haven’t lost your child and it’s only an image in your head you lost.

Being a parent of autistic children has its positives and negatives. I always do my best to put light to the positives of autism. As parents, we do have to be honest with ourselves and our own emotions. Embracing our emotions and learning to cope with them, helps us to teach our children how to work with theirs. Let me explain:

As a mom of two children with autism, I put on my battle gear ever morning. This includes that smile that tells the world that everything is peachy in our lives. But you know what, sometimes it’s not!

Sometimes, I am losing my mind! I am so stinking stressed out I can barely remember my why I walked into the living room. I have make up on to cover the claw marks where my son was sensory seeking and grabbed my face like it was playdoh!

There are days where I am so tired that I don’t even remember to take a shower. If I do, it’s with the freaking door open because my children won’t leave me alone for five minutes so I can make myself not look like sasquatch.

There are many days where I feel like I have completely failed as a mom. Simple, because I just cannot handle it all. Being a parent is hard enough, being a parent to special needs children is even harder. Especially when you are trying to raise other children as well. You know what though? That’s okay!

At some point or another, every parent with a child with disabilities feels this way. I write this to tell, it’s okay to have those negative feelings. It’s okay to be sad, mad, angry, and all together 42 pissed off. When we accept that we are human and not invincible, we become honest and true. But what do you do with all those emotions? How can you parent a neurodiverse family feeling like that?

Like Nike says, you “Just Do It.” Talk it out with a friend, go for a run, hide in the bathroom and cry it out. Go into an empty field and scream! Just let it out somehow. Then, refocus on the positives. God chose you to be their parent because He knows you are the only one qualified enough to be their parent. You are strong, you are loving, you are amazing. He gave you the greatest gift in the world, your child.

You get an opportunity that many never get to experience. Seeing the world through the eyes of a child with autism. It is a much different, and honestly, happier place. Embracing who they are, and embracing neurodiversity gives you all an opportunity to be happy.

Conclusion

Neurodiversity is truly about accepting your child for who they are. It doesn’t mean you’re not going to get them treatments where they need it. It’s not pro or anti medication. It’s about understanding that everyone is different, and accepting those difference to make the world better for each and every one of us.

Learning how to understand your child when they can’t speak their feelings to you, is incredibly hard. Many of the things that most parents forget about, you listen every day in hopes to catch them. Those emotions your child cannot express, you seemingly take them all on. Sadness, anger, happiness, elation, fear, worry, and exhaustion.

As parents, we are super heroes for our children. We take them to therapy, games, activities, and work through the daily challenges. At the end of day though, we are human. Extreme emotions are 44 a part of that journey. There are times where it feels like I take on every emotion my autistic children can’t, all at once. I wonder about their future. Will they make friends? Will they keep friends? What does their life hold for them?

Then I realize, I have those same worries about my other children. They each have their own hurdles to jump. They each will learn their own ways to make friends, and to learn their way through this world. Every child is different and unique.

Embracing neurodiversity means focus isn’t on what others can do, but what they can do. It’s not the quantity of friends, but the quality. It’s not how many hurdles that come up, but how many they learn to get over or around.

Connect with Adventures of The Mom Kind

I hope that you truly enjoyed this book. As you can see, we are the very definition of a neurodivesre family! As I mentioned, this all started with a blog that is still actively going!

At Adventures of The Mom Kind, I share what we have learned works and doesn't works in our day to day lives. I answer reader questions, cover a wide array of topics, and we are continuing to grow!

Though I do share my personal stories from time to time, the site is actually about you the reader! if you see something you like (or don't like), use those comment boxes! If there is a topic we haven't covered yet, but you really need information on, let us know!

I want you to interact with us and become a part of our extended family. I love connecting with other families that are at any stage in this journey!

-Alicia Trautwein

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