Parenting - Part 14

An Open Letter to Family and Friends of Autism

March 17, 2016/by Alan Dunn

“If you have met one child with Autism, well, you have met one child with Autism”.

While these words perfectly sum up the complexity of Autism, they are limited to the diagnosis itself. These words do not speak to the needs of parents. Needs which are critically vital to the health and mind of those gifted with the responsibility of caring for someone on the spectrum.

Every parent needs the support of loved ones. Special needs parents however, need both support and a level of understanding not found in “typical” households. This higher level of support extends to grandparents, siblings, cousins, friends, aunts, uncles, co-workers and more. A smile and random phone call is nice for many parents, but what these parents need (and often hope for) is a true understanding (even an attempt) of the responsibilities of raising a special needs child by loved ones.

I know. I am one of them.

Autism is not like a common cold where a few pills can help. Autistic children are not pets you can leave inside. Autism knows no age limits (yes, older people have it also). Autism is not something every “professional” understands. Autism is different for everyone – all those on the spectrum are unique. Parents and/or caretakers living with Autism have a complex need and desire to find support and have others relate.

Special needs parents know the personal challenges all too well.

The loss of friends, the strain to relationships, family members who don’t understand, acquaintances who suddenly disappear, teachers who blame bad parenting skills, strangers who judge, the cruelty of other children and more. Lucky parents have amazing (or at least decent) support systems. Many others often feel like they’re raising a child on an island.

Five years ago, my world changed when my son was diagnosed with Autism. So did my view of everyone around me. I have seen incredible kindness from strangers, extreme ignorance from “friends,” unconditional love from unexpected people, the best in teachers, the worst in teachers, financial motivation of “professionals,” brutal honesty from loved ones and more. This entire journey has allowed me to grow in ways I never thought possible.

First and foremost, my son is my world. He is the single most important thing to me, and always will be. He has taught me more than I could ever teach him. His autism is not a disease, not a virus, not something toxic. His joy, his love of life, his charm, his laughter—all of this is the autism I see.

But I am human. I am not perfect. It took time for me to get here. Once my eyes opened, I saw someone who would change my life forever. He also changed my perception of humanity.

That screaming child on the airplane whom I previously wanted to scream back at?

Today I would gladly sit next to that child and have them scream in my ear for a 14-hour flight so their Mom (or Dad) can have some rest.

That “annoying” child flapping his arms around and making weird noises in the movie theater?

Come sit next to me: I’ll buy you popcorn and laugh with you for hours at a scene I don’t even understand. You are amazing.

That non-verbal teenager who will never listen to anything he’s told?

Let’s be awesome together and play with crayons, drawing undecipherable images for days. I’m in.

That Mom or Dad who is trying to hold it together while their child loses it in Target since he dropped a sock?

Mom, Dad. Don’t worry. I will get on the floor and make funny faces and drop a whole row of clothes on me to make him laugh while you both go for a 5 or 50-minute break. You are heros.

Almost nothing annoys me anymore—except for people who do not (even attempt to) understand.

Most people live in a bubble.

A bubble of comfort, a bubble of expected privileges, a bubble where “first world problems” seem to be more important than decent humanity at times.

For the most part, I don’t blame anyone. I used to be one of them. Many have paid their dues raising their own children; some families have saved for years to go on a “peaceful” dream vacation; some friends didn’t see you the way you saw them. However, for those who have people they love raising or taking care of someone with special needs, then it’s important to try and understand—truly attempt to understand—the challenges they’re facing.

How can you find out what these challenges are?

Ask Them. Be Direct.

Ask direct and specific questions like: “Have you seen an Autism specialist?”; “What did the doctor say about his rocking?”; “Have you had his eyes checked?”; “Has the teacher ever told you what he likes in school?” Be specific. Don’t limit your questions to generic words like, “How are they doing?” Your loved one is likely way too tired to respond with anything more than, “They’re doing good.” Basically, another wasted moment of politically correct conversation that didn’t help. Also, never say, “That’s what all little boys or girls do.” These words will likely shut you out of ever having someone open up to you again.

Offer Help.

Truly offer help. Don’t just say, “If you need something, let me know.”

Many special needs parents have a hard time letting go and asking for help. This is not because they don’t want to or need help—it’s because they literally don’t have the energy to explain everything required for you to actually help. Trusting your child with a babysitter for a date night, and being able to actually enjoy that date night without thoughts of war at home, is a task very few people will ever master. (They really should find another name for date night for special needs parents—“temporary leave” sounds better to me.)

Read and Learn.

Trust me, it’s scary when you first start reading about any special need. Now imagine how your loved one feels being years into this. They probably have Google nightmares at times.

Show Up.

Just show up. That’s half the battle.

No child was ever raised without a community. And if you want to understand how your loved ones are dealing with special needs, then you need to become part of the community.

ACCEPT RESPONSIBILITY

The responsibility is on you, and you alone, to take the first step. You might even have to take a dozen steps to break through. Most parents want help even if they say they don’t. Sometimes the challenges are just embarrassing to talk about, other times they are trying to show you they are strong. There are also many times when some parents simply cannot find the words to ask for help.

People change. People adapt. Your loved one is showing you how strong he/she is. Maybe it’s time you do the same.

When you do, the rewards will be much greater than you can imagine.

I know. It happened to me.

A Special Needs Dad.

A Very Proud Special Needs Dad.

One Mother’s Attempt to Calm Her Daughter’s Meltdown

March 16, 2016/by AutismAwareness.com

Meet Helen Rutan and her daughter Isabella, who has autism. This video has been viewed almost 800,000 times and shows what many parents of Autism go through every day. While it can be hard to watch, we think it’s incredibly important to present real stories about both the good times and the challenges with Autism.

The most important thing to always remember is — YOU ARE NOT ALONE.

This Mom is just one example of the bravery and patience many Autism parents go through to help their children grow. Helen’s caption for the video reads:

“She is a sweet little girl with severe autism. She cannot speak, but she laughs, smiles, and adores being tickled! Every once in a while, she spirals into a meltdown and tries to bang her head. When attempts to soothe her don’t work, Isabella’s mother, Helena is left with no choice but to restrain her, as she does in this video. ‘It’s utter torment to a mother’s heart and soul,’ Helen writes in the video’s description.

“The bigger she gets the harder it is to control her….I won’t be outdone, though, I’ll become a body-builder first.”

We salute you. Both of you.

I Need to Know That I’m Not Alone

February 25, 2016/by Angela Conrad

I need you. I don’t know if you feel the same way, but I need you. Who am I talking about? You! I am talking to you reading this. More than likely, you’re a loved one of a child with autism, maybe a fellow autism parent or autism family member. I couldn’t go through this journey without you.

There are days that I just want to sit down and cry. Cry for my child because he can’t communicate with me. On some days I just want to cry because I see how my children struggle with social situations, struggle with sleep, and all the other challenges that autism brings. I feel beat up and lonely, and then I see you and I feel so much better!

What would we do without social media?

I believe that I have met almost all of my fellow autism parents on social media. The conversations that we have are amazing! The blogs, Facebook pages, autism websites—they’re the peanut butter to my jelly! I need you! You bring so much to my life and I wouldn’t be able to walk this journey without you.

There is nothing better in this world than talking to you and listening to your story. The stories you share about your child bring tears of sorrow and joy to me. You and your child are so dear to my heart, just like my own boys.

The struggles you go through daily are real, like mine.

It’s all real. Yet, the joys over the smallest of things are totally understood by you and that’s something that I need. I need to know that you jump for joy over pee in a potty too! I need to know that you know what it feels like to finally hear your name spoken by your nonverbal child. I need to know that you have many sleepless nights too. I need to know that I’m not alone.

As I walk my journey daily, I need you. I need your friendship; I need to read your stories. I need to know that you’re there too. We have to stick together. What would we do without one another? I can’t begin to imagine.

On days that I’m sinking in my pool, I need to know that you’re there to pick me up! We’re a special group of parents that have the most special bond that anyone could ever have. We’re all strangers, but the feeling that we have for each other is real. The respect, the loyalty, the beautiful children that we are raising—it’s all for real. Very few bonds can be stronger than ours.

So yes, I need you! I need to know that I’m not the only warrior mom out there. I’m here to let you know that you are doing an amazing job in our small, difficult, autism world. Keep your head up and I’ll do the same. Do the best that you can to hang in there daily. I know it’s difficult. I know the daily struggles. I understand. I’m here for you and please don’t ever forget that. May we all find peace in knowing that this beautiful world of social media can connect us with one another. Keep up the good fight, fellow autism parents. We’re very lucky to be walking this unique journey together.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

A Letter to My Neurotypical Middle Child

February 8, 2016/by Reneé Davis

To my dearest Clara,

I’d like to apologise for today. I haven’t been cucumber cool, and won’t be winning any prizes for my parenting skills. I’ve shouted too much and got angry too often, but I need you to know how remorseful it’s left me feeling. Because you, my lovely girl, do not deserve a shouty mean mama.

On days like today I’ve looked at your beautiful face and big blue eyes, and noticed (not for the first time) how much sadness you carry around. You look like you have the weight of the universe upon on those tiny shoulders, and it breaks my heart, it really does.

Your quiet, unassuming personality and good nature leave you vulnerable. The way you just get on with your business, and totally know your role in our family dynamic brings tears to my eyes.

You can be so serious, and it makes me feel too sad that you don’t get to be a regular kid. That we don’t see you skipping down the street full of the joys of Spring. Unless daddy or I take you out by yourself of course, and then your soul almost visibly lights up and you’re barely able to contain your excitement.

When your big sister wants to play nicely it’s truly the most joyous thing to watch, but when she’s feeling irritated, which she does multiple times every day, you are always the first one to cop it from her. I try so hard to intervene before you get hurt, but the damage done by low-level violence and name-calling is evident. What’s even more heart-wrenching for me to witness is when you mimic your sister’s behaviour, and bestow it upon your two-year-old brother.

In most families I know, the second and third children benefit from their parents being super laid-back. They made all their silly mistakes on the first kid, and by the time No. 2 is as old as you are, they’re virtually getting away with murder. It’s not the way this family rolls though; there is nothing laid-back and stress-free about us.

For this, and so many others things, I’m sorry my darling.

Sorry for the way that your sister controls every element in the games you play, sucking the fun out of them and leaving you miserable.

Sorry that we get so wrapped up in keeping life balanced and level for her sake, that you are often left underwhelmed, crying out for attention.

Sorry that it took us so long to realise just how much you hated your gymnastics class. Your sister needs it so much, you see, and it made sense for you to go too. It’s become apparent that it was causing you a lot of extra stress on a Saturday morning, and you can rest assured that we won’t be sending you back.

Sorry for the way that you sometimes bear the brunt of my anger and frustration, even though you’ve not really done anything wrong. You’re hardly being naughty, just doing what most four-year-olds do. It’s all a little house of cards, you see, and it can come tumbling down too fast.

People talk about the close sibling bonds that autism creates, and I can only hope this one day relates to our family. When you’re old enough to have it all explained, and you can understand why she does the things she does.

High-functioning autism is a minefield. How on earth could I possibly expect you to ‘get it’ until I do? I’m still very much learning and trying to get to grips with it myself. This is our transition phase, my beautiful girl, I just hope that any damage done doesn’t stick around. It’s a well-documented fact that being the middle child is hard enough.

Please forgive me for days like today. I’m trying my best, I really am.

Know that I love you all so very much.

Your Adoring Mama

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After surviving a severely dysfunctional upbringing, Reneé is determined to ensure that her own children have a better start to life than the one she had. Last year she wrote her first book. Become the Best You is part memoir, part self-help, and details how she ditched negative influences and behaviour to break the cycle of dysfunction.

Read more from Reneé by visiting her website, Mummy Tries or follow her on Facebook.

Looking to the Years Ahead

February 2, 2016/by Angela Conrad

I have thought a lot lately about my journey with autism. I can’t believe it has been four full years since the word autism was thrown in my face. So much has happened in those short four years. I have grown and became stronger in ways that I never thought was possible. I have learned how to become a fighter, and I have learned more about the definition of “hope” than I ever thought I would.

In my short journey, I have shed countless tears of sorrow for my boys. At the same time that I shed tears of sorrow, I have shed tears of joy over the smallest of accomplishments. I have learned the meaning of “tough love.” I have been up around the clock for days on end, which has led to severe sleep deprivation. I have fought battles that I never knew were possible. I have become a pro at foreseeing the things that will trigger meltdowns with my children. I learned to read all of Trenton’s noises and body language and know what he wants, since he can’t tell me. I have learned that severe and mild autism are nothing alike.

I discovered how to become an advocate for my children. After all, they can’t advocate for themselves, so who is going to if I won’t? I have spent days and nights researching the latest news in order to find something to help them. I have spent hours upon hours on social media talking to complete strangers because we have autism in common. I have learned that complete strangers often know and understand what I’m going through better than anyone else. I’m not sure what I would do without my “autism friends” on the Internet.

Sadly, on my autism journey I have learned that autism didn’t just bring challenges to my children, it also brought challenges to my marriage, family and friends. I soon faced the fact that the people who don’t get it are often the ones closest to you. Unfortunately, because of this, I have lost family, friends and a marriage in the past four years. However, as I mentioned earlier, I gained many new loved ones dealing with autism by seeking out the people just like me.

It has been a rocky road the past four years, filled with many challenges. If I could sum up what I have learned over the past four years and will continue to learn the rest of my life in one short sentence, it would be this: I never knew the amount of strength and fight that I had in me.

Autism has knocked me down, but I always get back up and will continue to do so. I didn’t know before that it was humanly possible to go on such little sleep and still have the energy and strength to battle each day. I never knew that two little boys could teach me so much about both myself and their disability. The past four years have been challenging, yet very rewarding at the same time. I am very blessed to travel this difficult road in life. I look forward to what the years ahead have in store for me and my children. I know, just as in these past years, that we will have many difficult times ahead of us, but we will get through it. We have that amazing strength to help us get by.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

Finding the Beauty – An Autism Story

January 8, 2016/by Angela Conrad

Autism is hard, without a doubt. I’m sure many of you would agree to that. As parents of children with autism, we face a wide range of emotions and challenges daily. There are times when I feel like I’ve been beat to the curb. However, at other times I couldn’t be more overjoyed by my children.

Too often in life, people focus on the “negative” things. When it comes to autism, it’s very easy to get caught up in the hustle and bustle of life with autism. For example, it is by no means ever calm and quiet in my house. Even though I have one child who is non-verbal, that simply doesn’t mean that he is quiet! He, along with my other son with autism who is verbal and loves to talk; well, our house isn’t exactly the place you go to in order to relax. I’m normally chasing Trenton around the house, trying to keep him from climbing up my walls (literally!), while Andrew is chasing after me, asking me every detailed question that he can come up with.

It’s easy to focus on all the tantrums, meltdowns and therapy schedules. Of course, it’s upsetting when we can’t participate in extended family functions or all the community activities that go on throughout the year.

Let’s not forget all the times we’ve been kicked at when it is “potty” time. All the minutes and hours throughout the day and week that we spend battling simple daily tasks just gets exhausting. Natural, daily functions are very complicated, time-consuming and often lifelong difficulties for children like mine.

The stress and overwhelming feelings are very easy to get caught up in as parents of children with autism. We often find ourselves not only lonely and jealous of people who live life without our challenges, but we often find ourselves battling a variety of other emotions daily.

Nonetheless, we have to stay positive and not forget to look at the beauty that’s right before our eyes.

Parents of children with autism and other special needs are so very blessed, if only you’re able to look beyond the difficulties. I have learned to appreciate everything in this life, both big and small. My sons have taught me to be thankful for things that I, more than likely, never would have appreciated before autism.

My children, just like yours, have so much to offer this world. You can find many blessing in your child, whether they’re mildly on the spectrum or at the most severe place on the spectrum. Our children are just like a present: It may take awhile to unwrap it, but there’s a beautiful gift inside when you get there. It is the most precious gift that you will ever receive.

I am not saying it’s easy. It’s by no means an easy job parenting children with autism. If you’re like me, you often function on very little sleep because your child was up all night. You may find yourself at your lowest point on certain days and that’s okay. We’re allowed to have pity parties, but try not to dwell on it. Find the beauty in your child. God granted us our children for a reason. I am sure none of us dreamed about having children with autism when we were expecting our children. However, God had different plans in store for us than we originally had.

My children have not only become the best teachers that I’ve ever known, but they’re also the most beautiful, innocent people that I’ve ever met. They are true examples of what all of our souls need to be like.

As I said before, I know how easy it is to get consumed with the difficulties of the world of autism. However, don’t let that keep you from seeing the beauty of it, too. If you can see the beauty and opportunities that are right before your eyes, then you will never again wish for a life that could have been.

Keep your heads held high, fellow autism parents! We don’t have an easy job, but it is a beautiful path!

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

I Get Jealous

December 11, 2015/by Angela Conrad

I’d be lying if I said I never get jealous because I do. Is that bad?

It’s one of those things that I hate to admit but it happens. I get jealous! I am a special-needs mother and I simply get jealous of non-special-needs mothers.

Now, don’t get me wrong, I have a great life. I have two wonderful boys who both happen to have autism. My oldest has severe autism and my youngest has mild autism. There are certain days that I feel like I could be an autism expert! I mean, how could I not be? I’m raising a good range of the whole spectrum in my house daily. I fight the daily battles of having a non-verbal child. Yet, I fight the daily battles of having a child who is VERY verbal with no filter whatsoever! Needless to say, our life can be very interesting and our house is never quiet.

With Trenton, I fight the issues of having a child who is in his own world 24/7. At the same time, I fight the issues of having a child who wants to be in everyone else’s world 24/7. My son Andres is the definition of hyper-social! My daily experiences with my sons are completely opposite. I could discuss the range of the spectrum in depth to the fullest that it has ever been spoken about. However, I’ll save that for another day.

Roller-Coaster Life

During my roller-coaster life I often find myself fighting jealousy. It creeps in like a thief in the night. On some days I feel like it comes out of nowhere—but does it really come out of nowhere? Maybe it came in a little bit at a time when I didn’t even notice. Maybe it sneaks in behind my strength I show every day. Maybe, just maybe, it’s always there but I block it.

Jealousy is all around special-needs parents. I never know what kind of emotions I’ll have and battle with daily until the situation arises. Sometimes we’re mad, happy, tired, sad, jealous and desperate. Sometimes we feel defeated and hopeless, but driven. On some days we are enthusiastic, courageous and frustrated. The list of our roller-coaster emotions could go on forever. However, the one that creeps in most often is jealousy.

Communication

I get jealous when I see children Trenton’s age that can communicate. I get jealous of other children and parents when I see Trenton have a meltdown because of his frustration at not being able to communicate. This jealousy of other children turns into sadness and I am sad once again for my child.

Jealousy comes when I see the sadness and fear in Andrew’s eyes. Andrew’s eyes are a strong voice that give away his wave of emotions when he doesn’t want to tell me. I get so jealous of the children his age that don’t have to fight the social fears that he does. Once again, my jealousy turns into sadness and I am sad for him—sad that he has to fight these daily battles.

Simple Tasks

I get jealous when I see other mothers at the grocery store with their children. I get jealous of the children who are walking along with their mothers, not having any meltdowns or battling any sensory problems while in the store. I get jealous at the mothers who can do the easiest and simplest task with their children because sometimes the easiest and most natural task takes days of planning and preparation for us.

Date Night

I get jealous of the parents who can go out and have a date night with their spouse. Not everyone is jumping at our door, excited to babysit a child with severe autism.

Sports

I am jealous of the children who get to play t-ball and who get to participate in all the social activities that most children enjoy. I am jealous of their parents who get to go and watch their children take part in “normal” extracurricular activities. I am jealous of everyone who gets to sleep at night. Our house doesn’t know what it’s like to sleep. My list of jealousy could go on and on and on, forever.

Me Time

In fact, if you’re a parent that can even let “your guard down” for a few minutes, then I am jealous of you too! I don’t know what it’s like to let my guard down for five seconds. My guard is up and going strong every minute of the day with two boys with autism.

Jealousy hits often and when it does, it hits hard. No one even knows when I am battling it because I don’t let it show. I’ve learned how to smile and live life to the fullest behind those jealous thoughts. I’ve learned how to hide the pain and keep it from interfering in my life.

I have always been known to be a down-to-earth, simple girl who has always been grateful for what I have been blessed with in life. I am beyond grateful for my two boys. I wouldn’t trade them or our life for anything in the world. In fact, my boys have made me a much better person because of their special needs.

With that said, getting jealous of others is human nature. Jealousy takes over when I just want to have a “normal” day with no autism battles. However, at the end of the day, I am beyond blessed in life. I couldn’t be more grateful for my sons and their special needs. They are truly worth it.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

Holidays and Autism. It’s That Time of Year Again.

November 19, 2015/by Angela Conrad

It’s that time of year again where most people start bouncing off the walls with excitement. We just had Halloween and now most people are getting their Thanksgiving plans in place. In fact, once Thanksgiving is here, it is officially that time of the year where everyone is thinking about the holidays and finding just that perfect gift for their loved ones. Before you know it, you are invited to not only your office holiday party, but your neighbor’s party, your side of the family’s party, your spouse’s side of the family’s party, and the list goes on and on. The average family thrives on all the joy and excitement that this time of the year brings. However, to many families, it simply brings nothing but more stress, anxiety and heartache.

To my family, the holidays are a very stressful time. It is a guarantee that, if we do attend a holiday party, we will be paying for it that night or even the next day. The extra stimulation is just simply too much for Trenton and can send him into sensory overload. That, of course, happens if Trenton even lets us step foot into the holiday party. Most of the time he goes into a meltdown just entering in an unfamiliar place and, before we know it, Trenton’s tears, screams and body slamming starts immediately.

It goes without saying that, if we do have the privilege of staying at a holiday party for a little bit, it is anything but enjoyable. I spend my whole time chasing Trenton around the party, making sure he isn’t going to break something. I am on his heels picking up the destruction that a child with severe autism can make in a matter of seconds, while everyone’s eyes are on me, staring at us in utter amazement.

Truth be told, it is just so much easier to turn down every holiday invitation. However, when I say we won’t be able to make it, I often get a confused look and I’m asked why. Now, how in the world do you explain to people who do not live with autism why you can’t make it?

As you can see, the stress never goes away! I have yet to decide which way is the easiest.

Next comes the question, “What would Trenton like this year?” Honestly, I have no idea! He is a five-year-old boy that is nowhere close to playing with appropriate toys. In fact, he doesn’t even play with toys. All he does is walk and pace around the house and occasionally play with one of his stuffed animals or animal figures. As his mother, I have no idea what to get him let alone what to tell everyone else to get him. Sadly, there is no guarantee that, after everyone spends money on him, he will even play with the toy. He may unwrap the present or he may unwrap it a week or two later. If he does unwrap a gift, it is often followed by disappointment on the giver’s face because he unwrapped their gift but tossed it to the side like a piece of trash. Deep down he may really like the gift but it’s just not what he wants at that moment. Getting others to understand that is a hard one.

Let’s not forget that during the busy holiday season we often have to deal with schedule changes. Schools and therapies are closed more to give their employees time off. We all know that schedule change and getting out of a normal routine can be brutal to many individuals with autism.

This time of the year can make us sad and jealous. I often get sad hearing about everyone’s big holiday plans and holiday traditions. I hate to admit it, but I get a little jealous too! Oh, how I long to have a wonderful fun-filled holiday tradition. How can we not get sad and jealous when the picture-perfect holiday times are all around us? I have not yet seen a holiday movie with the struggles an autism family goes through. As a matter of fact, almost every holiday movie is about the perfect ending for the holiday season.

The list of the stress that the holidays brings to families with autism could go on and on. If you’re like me, you can breathe a little better come January 2nd every year. Even though it’s hard and a very rough time, I take comfort in knowing that I am not the only mom or family going through the stress of the holidays with severe autism.

To my fellow autism families, hang in there this holiday season. We will get through it, like always.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.

What I’d Say to the Mom I Was Seven Years Ago

November 11, 2015/by Kate Hooven

When Ryan kicked ass on trick or treat this year, walking with friends, wearing glow bracelets and not having a single meltdown over how the costume felt, or why Blues Clues was walking down his street and not on his television in the family room, after I stopped sobbing over how far he has come, I couldn’t help but be amazed at how far I have come too.

As he blended into the crowd of teenagers laughing and giggling, I couldn’t help but wish I could go back in time to a previous trick or treat where I lay crying on my bed and pull back the covers and make me see what I couldn’t back then.

Throughout this autism journey, there have been many moments where I have wondered, “Where the hell is Marty McFly and his time-traveling DeLorean?” Where was Marty when I fell apart in that psychologist’s office after hearing The A Word, to give me a ride to the future to see that one day The A Word would NOT be as derogatory as The F Word? Why didn’t Marty just pull up curbside when Ryan was so obsessed with weather that we almost had to block the Weather Channel like some folks have to block Cinemax, and set that time machine a year or two ahead to let me know that one day we could actually plan an outdoor activity, even if there was a 60% chance of a thunderstorm? Where was Marty to show me that one day Ryan would be able to wear a suit and tie and sing in front of an audience of hundreds of people, when I was practically sitting on him to put on “scratchy” mittens and a hat in 10-degree weather all those years ago?

As much as I would have loved to take a road trip to the future with Marty McFly back then, if that DeLorean pulled up in my driveway today I wouldn’t want to shoot to the future: I would want to cruise to the past. To go back to a time when I was at my worst, to sit down with the mom I was seven years ago and help her see that, even if Marty McFly rode up in his DeLorean to show me how it all turns out, the future was not where I was supposed to be. Even though I would have loved just a tiny glimpse of what was to come, the present is where I needed to stay because the present is where Ryan always was, always is and always will be.

Yes, if Marty set the DeLorean to 2008, when Ryan was 7, I would grab the much-younger, less-wrinkled me (and admire her skin for just a moment) and have a sit-down with a bottle of wine and try and make her listen and learn from the 2015 me. And if the Past Me would listen to the Present Me, here is what I would say:

Stop comparing. He is not his big brother, the kid down the street or any of the kids in his classroom, so stop comparing him to all of them. He is Ryan and yes, he does not play like the other kids, he does not learn like the other kids, he does not talk like the other kids, but the way he plays, the way he learns and the way he talks is unique and really kind of fascinating. So focus on him; not on others.

Don’t try and change him. Yes, you will still see those differences, even if you stop comparing, but, don’t try to change him. Don’t make him look you in the eye when he can’t, don’t make him wear clothes that he can’t, don’t make him participate in activities that he can’t. Instead see all that he can do and accept him for that.

Enjoy him. When he laughs, laugh with him. When he spins under the kitchen light, spin with him. When he presses the same button on a toy over and over and over again, instead of plugging your ears and worrying, sit next to him and enjoy him. When he plays with a toy in a way other kids don’t, get on the floor and play like him rather than showing him “the right way.” Enjoy the fact he has found his way to play rather than making him play in a way the directions or you expect him to.

Listen to him. When he scripts in a silly voice, script back in a similar-sounding silly voice instead of saying, “I want to hear Ryan’s voice” because that silly script is his voice. He is communicating with you, so listen and you will hear him.

Be there for him in the present and stop worrying about the future. Oh, me seven years ago, the things you will miss worrying about the future. The beautiful, little boy who stands right before you now will be gone in the future. He will grow up and, like most teenagers, he will pull away. Don’t miss the present worrying about the future.

See the strengths, not the deficits. Yes, he struggles to communicate. Yes, he has a hard time making friends. Yes, he is incredibly rigid in his thinking. And yes, he has a lot of sensory sensitivities. But he is brilliant, he is a rule follower, he is musically gifted, he is hysterically funny and he will one day be stronger than anyone you know.

Appreciate the routines and schedules – they will pay off one day. When you skip aisle 5 (the pet food aisle) in the grocery store because you don’t have a dog or a cat and he melts down because you skipped a number, go down aisle 5 anyway. These routines, these schedules, are how he makes sense of the world. If you could figure out the world by hitting every aisle in the grocery store, wouldn’t you?

Admire him. Sneak into his room when he is sleeping, after his brain has finally shut down for the day, and brush your lips across his still-damp, clean head and appreciate its glorious smell without focusing on how hard it was to get it clean. Admire all that he accomplished that day, even if was just taking a shower.

See him. See past Autism to the boy who lies beneath the label. That is where you will find him. He is not on Google, he is not in the DSM-IV or DSM-V, he is not in a therapist’s office, a doctor’s office or in any book you will read. He is right in front of you, so see him.

Advocate for him. Make others see him, not his autism. Make others hear him, not his autism. Make others aware of him, not his autism.

Find new friends. Stop drinking wine with Denial, Clueless and Guilt and instead have Acceptance, Awareness and Forgiveness over to dinner. Oh, and let them bring the wine.

So there you have it: Some advice from Present Me to Past Me. Heaven knows, this list could be endless. Of course, if I would have said any of these things to the old me, the old me would have surely run over the present me with that DeLorean. Because the old me had to live it to learn it. She had to cry to laugh. She had to doubt to accept. She had to worry to appreciate. She had to understand to advocate. She had to hurt to love. She had to do it all on her own… without Present Me, Future Me or even Marty McFly.

Before the old me tried to take me out and run me down, I would try and get the last word. And those words would be to keep her mind, her eyes, her ears and her heart open and maybe then she will no longer spend quite so much time in the past or the future. Instead, she will be in the present, right where Ryan is, right where he needs her to be.

In the past and the present, I have made horrible blunders, but my biggest regret – the one thing I would want the 2008 me to learn from – is to appreciate the present, to love him and accept him here and now. The future will be here soon enough and I know I had to prepare him for it, but I didn’t have to let it steal the present.

So, hey me! Stop waiting for Marty McFly and just sit back and appreciate the present. Because by tomorrow, today is gone.

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Kate and her family have lived in Mechanicsburg, PA for the past 20 years. When Kate is not busy advocating “different, not less,” she enjoys reading, binging on Netflix and spending time with her family and friends.

In addition to her advocacy service and her blog, Kate is also a Justice System Consultant for PA’s ASERT (Autism Services, Education, Resources and Training) Collaborative. With her prior experience working in PA’s Juvenile Justice System and her passion for advocating for children and adults living with autism, Kate enjoys her time training probation officers, police officers, attorneys, judges, correctional officers and others employed in the justice system in order to raise awareness of the impact an autism diagnosis has on those that become involved in our juvenile and criminal justice systems.

Kate hopes that, through her writing, she is sharing a real, raw and AWEnest look at how autism impacts her family, and in doing so, she may help other parents recognize that they are not alone on this autism journey. Her stories and photos are shared with permission from her incredibly AWEsome son, Ryan, who also wants people to believe that even though he is “different,” he is not ever “less.”

To read more from Kate, follow her on Facebook or visit The AWEnesty of Autism website today.

Love Needs No Words

November 4, 2015/by Angela Conrad

Raising a child who is unable to communicate has been one of the most challenging parts about autism. It is not simply just the fact that he is non-verbal but, at this time in his life, he remains unable to communicate. Even though we have shed countless tears together through our frustrations of not being able to communicate, Trenton has taught me that love needs no words.

Oh yes, I long for the day when Trenton can communicate to me. Just like any parent of a non-verbal child, we want to hear our child’s voice. I am blessed with the fact that Trenton can say a few words, such as “juice”, “cookie” and “ice cream.” However, it doesn’t go much beyond that.

Even though his words are limited and his ability to communicate through any other method is also limited, he has been the greatest teacher that I have ever had. He has taught me a lot about love, acceptance, courage, strength, patience, determination, perseverance and many other things in life.

I have learned through Trenton that there is much more in life than words spoken from our mouth. Trenton speaks volumes daily through his actions. Sometimes I have to dig deep to figure out what he is doing or what he is trying to relay to me. On some days it is not easy to figure out what he wants. I have gone into meltdowns myself trying to figure out what he wants because I was having a difficult time trying to figure it out. The anxiety that builds up in me when I am trying to figure it out before he reaches his climax and goes into a meltdown is very nerve-racking. I am sure most parents of a non-verbal child with autism know exactly what I am talking about.

Even though our days are not easy, they are very rewarding. The way his eyes light up when he knows I figured out what he wants is priceless. The little pat on the leg he gives me when he is happy is his way of thanking me. The happy noises I hear from him are the sweetest music that my ears have ever heard.

In our house, we do not need any words.

Nonetheless, just like any other parent who struggles daily raising a child who is unable to communicate, I dream about his voice. I dream about talking to him. I dream about the day he will walk up to me and say, “I love you, Mom. Thanks for everything that you do.” Oh how I dream!

There is nothing wrong with dreaming about that day. Don’t we all think about and dream about things that we want so badly in life? Some days are much easier than others.

Some days the frustrations are not as apparent as other days.

So, to the parents of non-verbal children out there, I understand your pain and struggle. I know the numerous tears you have shed for your child and with your child. The highway we travel on this journey in life is a tad bit difficult. However, the joy our children bring to us is magical. We can communicate with our child with no words at all. If you are like me, you have learned every sound that your child makes and you know exactly what he wants from that sound.

Never give up hope! Continue to cling to hope because it’s what helps us get through our days. I understand how much you want your child to speak; I know how it feels to want something so badly that it hurts. However, until the day comes when we can hear our children’s voices, let’s be theirs for them.

Treasure the love you and your child share without words. It can be quite beautiful and amazing.

Love needs no words.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.