Angela Conrad

I’m Lost in the Chaos, but Still Me Inside

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Angela Chaos1I am a special needs mother, and single too. The single means I have no partner in my duties. I do it all with no breaks. I can’t step aside even if I want to. I can’t walk away and take a breather after a full hour of tantrums. It’s hard, but we are doing great because that is how I am choosing to look at life.

I would love to sit on my couch and sip my coffee and enjoy the quiet time when I get a chance, but it doesn’t work that way with special needs parenting, especially when you are doing it alone with two children with special needs. There are always hills to climb and holes to fill, and they must be done in order to make the next day’s challenges fewer.

Our days are made up of challenges. We never go through a day free of them, and it is very hard to deal with the trials each day. I can’t even put into words what it is like to live the same daily routine over and over. It’s hard, yet rewarding.

With that said, there are days where I have my moments. Don’t we all.

I might not always greet you with a flashy smile.

I may have a hundred other things going on in my head, thinking about how to handle a new situation that just arose in our life with autism. I may not have time to respond to your text, email, or phone call.

I may say something that might be a bit on the snappy side and it may not even come close to making sense to you. Most likely, it will leave you thinking, “What’s wrong with her today?” But please don’t ask that out loud, unless you want a detailed report of what is really wrong and then we can compare our days.

You might catch me getting antsy in the long line at the grocery store. My time is so valuable and, if I am at the store by myself, I want to get my items, get home, and breathe before the boys get home. That’s when the real hurricane starts and it’s all hailstorms from there.

I have to rearrange my days around my usual McDonald’s trips. One of my sons will only eat fresh chicken nuggets from McDonald’s daily, with lots of ketchup. When we don’t get lots of ketchup in our take-home bag, I will march right back and ask you for more. Most of the time I am not very polite because the tantrum has already started over the two ketchup packets for 20 chicken nuggets.

Sometimes you’ll see me in yoga pants every single day of the week, but it doesn’t mean I am doing yoga. I am lucky if we get out the door every morning with everything on. We have left the house numerous times without shoes, and even a time or two in our pajama tops. Yes, believe it or not, I have forgotten to put a bra on because I have been so busy with the morning autism chaos.

I sometimes go to sleep with 30 stuffed animals and 20 baby Einstein DVDs in my bed, but I know better than to move them. I’m sure you know what I mean.

I may get a haircut once a year, my nails and toenails always look ferocious, and I can barely keep track of so many other personal issues. Special needs children seriously changed my life.

My focus each day has gone to OT, ST, IEP, IDEA, and ABA. If you don’t talk to me in acronyms, I may not even understand you anymore.

So, I may not always come off as the friendliest person in the world, but I really am deep down. Somewhere in there, I am the same fun-loving person I was 10 years ago. Life just happens. Moments happen. But I am still me, with just a touch of autism in my life. It tends to take over daily.

Courtnie Rederick

My Deepest Hurt

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Courtnie1My 6-year-old son was diagnosed with autism spectrum disorder when he was 3 years old. At the time of diagnosis, I had him enrolled in a traditional preschool. The preschool was absolutely wonderful and they did everything in their power to accommodate my son.

I started the process of interviewing local kindergartens during my son’s last year of preschool. At the time, my older son was attending kindergarten at a local private school that just happened to be located above my other son’s preschool. Naturally, I felt that it would be best if he attended the same school as his older brother. So I decided that I would reach out to the school’s principal to discuss my son’s needs.

My son has high-functioning autism. He is completely verbal and he excels in reading. At the time of pre-kindergarten enrollment, he struggled with transitions and self-regulation. Meltdowns were avoided by the use of a timer and a visual schedule. In my heart of hearts, I knew that my son would do well in kindergarten. He had already made huge gains through intensive therapy.

Unfortunately, the school principal had little understanding of the autism spectrum. She told me that my child could only attend school as long as his ABA therapist attended with him. In addition, she told me that initially he wouldn’t be allowed to come to school if his ABA therapist couldn’t attend on a particular day. She felt that it would be necessary for him to prove himself. This absolutely devastated me! My feelings were this: “Why does my son need to prove himself? Is it because he has autism?” As an autism mom, this was one of the most devastating experiences of my life.

During the time, I began to do a lot of soul searching. I ended up seeking advice from my mom. She made a point that ended up resonating with me. My mom said, “If you hadn’t told her about his autism diagnosis, she would have never known.”

I began to ponder this statement. At this moment, society is autism aware, but are we truly accepting of people on the spectrum? If I could say one thing to people who don’t have experience with the spectrum, it would be, “Don’t be quick to make assumptions about a child with autism. All children are unique and they deserve to be treated as such.” Not every autistic child is Rain Man and not every autistic child is a savant. Autism spectrum disorder is called a spectrum for a reason.

I ultimately decided to send my son to the local public school. When I made this decision, I also decided to send my older son as well. As a mother, I did not want my little guy having to prove himself on his first day of school. I am pleased to say that my son has done exceptionally well this year. He is in a traditional kindergarten class. He has an extremely supportive team of individuals who have proven that they are dedicated to helping my son succeed.

This isn’t to say that he hasn’t had difficult days, but as his kindergarten teacher has said, “All students have trying days. Your child isn’t any different.” If I had to sum up this year in one sentence, I would say, “My son has rocked his first year of kindergarten!”.

Angela Conrad

Dear World, I Miss You.

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Woman Writing

It’s not you; it’s me. I miss you. Sometimes I withdraw from you, but I don’t want to. It’s hard, really hard being an autism mom. My life is far from the typical life. I have a child who I can’t take anywhere. He gets over-stimulated rather quickly.  He is non-verbal and not able to use the potty on his own. He has lots of meltdowns. His life is hard. Our life is hard.

I want to participate in the things that you have to offer but it’s strenuous, to say the least. Sometimes we can and sometimes we just simply can’t. We never know what we can do from minute to minute, day to day. Some days are easier than others, but the hard days can be gut-wrenching. Nonetheless, each day always brings some amazing, priceless moments. Either way, my top priority is always my children and what they are able to handle.

I find myself wanting to make friends and getting to know the new town that I have lived in for a year and a half now, but I just can’t. Many days, my life would likely scare away any neighbor or new friend. It’s not simply about not wanting to; it’s that I am unable to at this point in my life. I withdraw from making friends because I can’t do my part in a friendship.

I just can’t be the type of friend that drops everything and is there for you when you need me to be. It’s not that I don’t want to; it’s that I can’t. My children have special needs and the number of people knocking on my door, offering or even willing to babysit is few and far between. I have to be here for my boys. I can’t give 100% into any other relationship in my life. If I did, it would be taking away precious time from my children and their special needs.

Just because I have to withdraw from you, doesn’t mean that I don’t want to be a part of you. I still want to hear from you, even if I may not respond right away or be able to participate. It’s not you; it’s me. Well, it’s a little bit you. You’ve gotten harder; I haven’t changed. I am still the person that I was ten years ago. I still love to laugh, talk to friends, go shopping, exercise, help the needy, host family and friends, watch the St. Louis Cardinals win, and so much more. That is all still the same. What has changed is that I have children who are unable to do all of that. And if they can’t, I can’t. World, please know that I want to, I just can’t.

Therefore, until the day comes when I am able to do some of the activities like I used to, I will continue to watch and care over my children. I will continue to feel withdrawn from you. I will continue to refrain from making new friends because I just can’t. It’s not an easy life, but it is what it is and I have an obligation to my children. But keep being you, and we’ll see you when we can.

 

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Peter Fragola

Coming to Terms. It’s OK to Be Scared.

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It's OK to be scared.

When Jax was still a few months away from being the cute little monster he is today, I wondered what it would be like to have a son. I was so excited to play catch with him in the backyard and teach him how to shave. I was also concerned that I wouldn’t be able to sit back and relax after a long day at school. I wondered if I’d ever have the time to watch an entire Yankees game ever again or if I’d always be too tired to stay awake for an episode of Game of Thrones. I figured my morning cup of coffee (large hazelnut, light with skim milk and one sugar) would be a thing of the past because I’d be spending my paycheck on diapers and a college education.

How cute were those concerns, right?

Those were the days. The last week has been insane. I finally felt that I couldn’t hold anything in anymore and decided I wanted to be open about my concerns…. No, not concerns–my fears. I was afraid. I am afraid. I’m scared about what is… what could be… what might be… going on with my son.

On one hand, he’s the smartest, cutest, most charming guy in the world (clearly all traits he inherited from his father). On the other hand, his communication skills are “developmentally delayed” and he is struggling to communicate with us. He wants to tell us what he wants and needs so badly. I can tell. I can feel it in my heart and, as a parent, you know–you just know–when your child is tying to tell you something.

Here is the point in this blog post where I have to take a second to admit I’m in tears and I’m scared. I’m scared because I’m the dad and I’m crying. I’m supposed to be the big, brave guy for my son, right? I don’t know how I’m supposed to act anymore. I really don’t. I feel like the most helpless and horrible parent ever.

So here we are… Just another day of me complaining about my son not being able to talk or tell me what he wants. Great, another blog post where I rant and rave about my inability to help my son. Yet, for me… It’s not just that. It’s a chance for me to say, “This is what I’m going through, this is what we are dealing with, and it’s OK. It’s OK to feel like your world is caving in and that you aren’t ever going to be able to do as much as you wish you could do to support your child.”

So as I just said, here we are… at a point where a feeling of loneliness and a feeling of helplessness overtake days of smiles and laughter. Where being strong because you’re the dad and the one with the educational background and the one with special education experience is supposed to reign supreme.  Yet, the only thing you’re sure about is that you aren’t sure about anything.

I used to think worrying about nightlights and how many ounces of milk he drank in a day were the stresses that caused parents to drink multiple glasses of wine with their Xanax. So, for me to admit these issues is at least the beginning of what we are going to be dealing with for the time being. It at least gives me a point of reference. It is the point where I say that I don’t know what the hell is going on and I surely don’t know how the hell to fix it. But I do know this is the point where we begin trying. (Not that we haven’t been implementing strategies to support his development already).

I’m not writing this blog post as a parent of a child with autism. I’m writing this post as a parent of a child who is not talking, as a parent who has been told his child is possibly on the spectrum, and as a parent who has struggled with knowing where to turn for help and support. I’m writing this blog post as a parent who is coming to terms with the initial stages of a child who is showing a developmental delay.  I’m writing this blog post as a parent who has read plenty of people write about “being strong and all will be OK.” But not enough people write that it’s OK to be mad, and sad and confused and more likely… It’s OK to be scared.

Caitlin Cavallaro

On The First Anniversary Of Our Autism Diagnosis

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cavallaro

To the parents anxiously awaiting that first doctors appointment. Hoping, wishing, and praying that all those “idiosyncrsies” you see in your precious child, are just that, eccentric quirks. You’re longing to hear that everything will be fine – that it’s all in your head. That you’re just being overprotective, over reacting or jumping to conclusions.

I was you 365 days ago.

One year ago I sat in that sterile, white neurologists office regurgitating information about my son while he threw blocks, cars, and anything else he could get his hands on in the corner of the room.

One year ago I was told that my life was essentially over – while attempting to keep my composure, words I never thought would describe my life as a brand new mother were thrown my way – autism spectrum disorder, lifelong care, endless therapy, and thousands of dollars out of pocket. I sat there, attempting to take it all in – to absorb everything as I listened to a man who had just met my sweet son and I try and tell me that my son may never live alone and I may go broke attempting to care for him.

But today, today I’m drinking a glass of wine (or five) and skipping my evening workout. I’m going to sit in front of my TV and binge watch Chuggington on Netflix while I hold my precious little boy at my side.

Because we’ve survived.

We’ve survived one whole year of autism in our life.

If you would have asked me a year ago, I’m not sure I ever thought we would make it to the one year mark unscathed.

cavallaro

To you newly diagnosed parents, I know it might seem like theres a dark cloud following you around and although this is new territory you’re venturing into, if theres any advice I wish I received at the beginning of our diagnosis, it would be…

Don’t google.

Google is NOT your friend. I repeat, Google is NOT your friend! The day my precious baby was diagnosed with autism, I immediately went home, locked myself away in my bedroom and googled. A plethora of information, most scary and worst case scenarios came up in my searches. It was information overload.

It’s okay to feel grief.

One of the hardest things about this autism journey is getting past the grief you feel and the expectations you previously held for your child’s future. It’s perfectly normal to feel a twinge of sadness as you see other children your child’s age jumping through hoops in terms of milestones, while your child is seemingly getting left behind. It’s okay to cry, it’s okay to take time for yourself. It’s okay if you don’t know what to do yet. It’s okay to search for what works best for your family.  It’s okay to scream and lock yourself away for a little bit, because sometimes that is the only place where you can find solace, as long as you realize when it’s time to brush yourself off, get up and be an advocate for your child.

Not everyone you meet will be kind.

Not everyone you meet will be sympathetic. Not everyone you meet will understand the struggle of raising a limited verbal child. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry an ocean of tears, right along with your child when they’re arching their back, hitting themselves compulsively in the face, and throwing everything off the grocery store shelves. When they struggle, you struggle. When they hurt, you hurt. When they feel overwhelmed with the world, you can’t help but feel the same. You wish more than anything that the world would just understand your child. The stares. The whispers. The unkind words. The looks of disgust. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your battle. Allow those unkind and challenging instances to give autism a voice and to educate those around you.

Everyone will all of a sudden become “autism experts.”

Many times when people think of autism, they immediately think of Rainman. Remember, every child with autism is unique. Post diagnosis, the floodgates of advice will open. Most mean well, but some don’t. You will be told that your child “looks normal”, you’ll be asked “if you’re sure.” You will most likely get the spiel that vaccinating your child caused it – or that if you would just give them this or that, your child will be cured. Your child will be compared to your uncles, brothers, sisters, cousins, friend with autism. Your journey may be vastly different from those around you. What worked for one person, may not work for someone else. Oh yeah, and Jenny McCarthy is not God.

Find your tribe.

You can’t do this journey alone. It’s just not possible. When the world feels like it’s spinning and you aren’t able to stand still, your tribe will be there to keep you grounded. They will understand the struggles, the meltdowns, the anger and grief, the feeling of being alone. Find them. Love them. Cry with them. Thank them for being so freaking awesome in your life. Seek out any and every avenue to meet others faced with the same journey.

Don’t discount those little milestones.

For us special needs parents, it’s the little milestones that many neurotypical parents take for granted that mean the most to us. I remember the joy I felt the first time my son looked at me when I called his name. Or the time he used sign language correctly, after 8 months of practice, to communicate his need of wanting more juice. I think we both jumped up and down like crazy people the day he pointed to the fridge and attempted to say the word “apple” – meaning he wanted applesauce. You will never take those seemingly small moments for granted – and you will feel on top of the world, each and every time they occur. So many times your child will surprise you and exceed and surpass your expectations.

I know it might seem as though you have a huge mountain to climb – and you’re afraid because you can’t see what’s on the other side, but I’m here to tell you that things WILL be okay. I was YOU one short year ago. I remember being devastated and terrified of this new life I was forced to live.

I won’t tell you that it’s been easy – there have been more days than I care to admit that I would want nothing more than to crawl into a hole and hide away from the world. There are more days than I care to admit that I wish and pray autism away. There are more days than I care to admit the defeat I feel for my child when I see how long it takes him to master a skill. There are more days than I care to admit where I feel sadness thinking of the struggles my child will face later in life. There are more days than I care to admit where I wish I could understand that little boy’s world. There are more days than I care to admit where I wish self-injurious behaviors, anger, anxiety, and aggression didn’t rule our life every second of every day.

Raising a child with special needs can be a tough pill to swallow. It alters your perspective on parenting and transforms you as a mother, whether you want it to or not. The days seemingly become longer and longer, and patience starts to run thinner and thinner. One year ago my world came crashing down around my feet.

But, over the past 12 months, we have been able to pick up those broken and shattered pieces of our life. We have been able to find some amazing therapy and a place that feels like home. A place that has allowed my child to thrive and progress, more than we ever imagined possible. We have pulled strength, courage, and determination from places we never knew or even realized exisisted, ESPECIALLY on those days where the weight of the world seems and feels like a never ending struggle. We have immersed ourselves in autism groups and become advocates for a child that doesn’t yet have a voice. But, don’t let that fool you, because even without words, this little boy is sharing his love of life with the world.

I feel hopeful and confident about our future. We have prevailed. We have overcome an abundant amount of roadblocks, many that I never imagined we would be able to maneuver through. I may not have all the answers yet and there may be more twists and turns on this adventure than I would like, but I realize our life isn’t over and that autism doesn’t mean a death sentence. That this is just the beginning of our new and beautiful life.

cavallaro

This Ausome™ article was originally published on Caitlin Cavallaro’s blog, “Life Through a Different Lens” and republished with permission. Please visit Caitlin’s website or like her Facebook page for more great words.

Angela Conrad

I Need to Know That I’m Not Alone

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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.

Alan Dunn

An Open Letter to New Parents of Autism

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Family Together

Parenthood. It’s a beautiful thing.

As soon as that pregnancy test shows positive or that adoption call is received, your world changes. Your hopes and dreams are modified to include hopes and dreams for your children. Visions of holidays and birthday parties dance in the air. The word “Mother” or “Father” is suddenly not old-sounding, but kinda cool. Your whole life is changing and you can’t wait for that child to be born.

The child appears and is more beautiful than ever. You can see yourself in them. Your life instantly changes to a focus on keeping them safe and building a better future.

The months go on. You share laughs. You share cries. Everything Parenthood was meant to be, it is. Nothing is more beautiful.

Then one day you notice something. Another day you notice something else. At first, you ignore it or pawn it off, but then your friends and family ask if he/she is “okay,” or your spouse suggests seeing a doctor, or you start reading online about why something isn’t right.

That special spark changes to concern. After all, your job is to keep them safe.

The concern builds. You see sparks in other children that your child doesn’t seem to have. You see behavior that isn’t typical, yet you question what typical really is.

One day you choose to stop playing doctor and go see one.

The word Autism is spoken.

A word that slightly touched your vocabulary before, but was rarely ever used. A word that was seen only in articles you read. A word that never entered your household. A word you really don’t even know the meaning of.

The world stops.

You say it again. Autism.

How? Where? Why?

It can’t be real.

How do we beat this thing? Is there a pill? Can we just give him a shot? He’ll be okay by Sunday — he has to be.

My child doesn’t have Autism. That’s crazy.

Oh, but he does.

New Parents should know that everyone has a different experience, but almost everyone goes through the same feelings.

Responsibility

“Autism is my fault.” “How did I give my child Autism?” – So many phrases like these will circle in your head. You’ll lose sleep. You’ll blame yourself. You’ll blame your spouse. You may even blame the mailman. It’s okay. We all went through this. It’s nobody’s fault. You are not responsible for Autism. You are responsible for keeping your child safe. You are responsible for helping them grow. You are responsible for so many great things and blame is not one of them.

Failure

“What did I do to deserve this?” “I can’t do this.” “I’m not cut out to be a special needs parent.”

First, you didn’t do anything wrong. He/she was made this way.

Second, you were cut out to be a parent. And that means loving your child NO MATTER WHAT. If we all had a choice, I’m pretty confident that a football star, rock star or Mark Zuckerberg would be the first choice for our children.

Sadly, that isn’t what happens. We learn to play the cards that were dealt and that’s what makes a great parent – not wishing for the best of the best but loving what you have. The sooner you realize that your child has nothing but unconditional love for you, and that you are the guardian of the person they will become, then the sooner your actions will help their development. You may not have chosen to be in this situation but you can choose how to deal with it going forward.

Anger

You will hate yourself. You will hate your spouse. At times you will hate how Autism makes you feel. It is OKAY. We all did. Many still do. But the great thing about anger is it goes away. Remember those four magical words: You are not alone.

Trust me, I’ve been there. The parent feeling alone, fighting the world of typical kids and happy marriages. Everyone else had something beautiful. I was robbed. I was angry. I checked out. Then something magical happened. I saw my child. I saw who he was. I saw he needed me. I saw he loved me. I saw he never judged me. I saw he wanted to be like me. I saw he laughed with me. I saw everything. All I had to do was open my eyes.

This will happen to you. Why? Because love conquers all.

Losing Friends

You will lose friends. It happens to all of us. But you know what? With every life change you lose friends. If you change jobs, get married, move miles away or stop dating the hot one … every turning point in your life will involve losing friends. The delusion is believing many of these people were real friends to begin with. You might have 300 “Facebook friends,” but if you can count your true friends on one hand, than you are luckier than most.

You’re a parent now. In fact, you just gained your new best friend for years to come. Your child. This is a time to focus on your family and not those who are just visitors in your journey of life. New friends will appear. Some will be awesome. Some will make you gossip. Some will spill secrets. Some will annoy you. Enjoy the sport of understanding people again. It’s fun and certainly a nice break from watching Thomas the Tank Engine for the thousandth time.

Embarrassment

My favorite. Your child will embarrass you. And not the way typical children will. They may hit you, scream at you, throw shit at you — all in a public place, while making sounds and body movements resembling those of master circus performers. You will look like the parent who can’t control their child. You will feel the eyes of everyone around you. You will feel alone in a sea of judgment. This will happen over and over — and then … one stranger will say something so kind and incredible to you that all of the embarrassment will be gone. You will find strength from that single moment to be Super Mom or Super Dad and say Heck yeah – that’s my child and I am so proud of him.

No one has all the answers for the set of challenges you face. No Grandparents. No Friend. No Doctor. No Teacher. No Advisor. Some can help. Some will guess. Others will have no clue. Many of them are also experiencing the uniqueness of your child as much as you are. One of the most popular quotes in this community is “When you meet one child with Autism, you have met one child with Autism.” A beautiful set of words, defining how unique every child on the spectrum is.

What I can provide are words of comfort and wisdom from being a parent who shattered and then found himself again, and its simply words my parents told me many years ago: “When you fall, get back up.” Your parents likely said the same thing. And you know what, our parents were right. The key is to get back up early and never, ever let the challenges keep you down.

Almost every new parent of Autism (and almost any special needs child) will go through these stages. Just always remember these four magic words.

You are not alone.

Angela Conrad

I Get Jealous

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jealous momI’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.

Kate Hooven

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

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Looking BackWhen 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.

Kate HoovenIn 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.

Ms. M.

Unspoken Bonds – by an Autism Mom.

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Mom holding sons hand“It feels as though I had a string tied here under my left rib where my heart is, tightly knotted to you in a similar fashion.”

I don’t know about you, but I have always been a sucker for a good old bit of escapism into Jane Eyre’s world of period costumes and romantic drama. And without fail that line always leaps off the page right at me every time I read it. That magical connection between two people that needs no words. No explanation or thought. It exists…… just because!

This is how I feel about my children. They are my world and I’m connected to them through invisible bonds. You see, they will always be part of who I am. It’s instinct, and I just feel it – like string connecting our hearts together.

I feel their pain; I share their joys and laughter. I worry when they worry. When they cried as babies I knew what they wanted. When they stir in the night I am there to soothe them. When they need care and love, I am there. No words are ever needed, because I’m their mum.

I have close relationships with each of my three, and my girls are growing up to be wonderful young ladies. I can see their independence developing; and their personalities blossoming, as bit by bit I slowly have to loosen the string that connects us. They have their own minds; and ideas, and they will leave me one day to live their own lives with their families. That bond will always be there but I will have to let it stretch some more to let them go when the time is right.

My relationship with my Autistic son feels somehow different. Our strings are still connected as tight as ever, if not tighter. Maybe it’s because he can’t always express himself, or because people find it hard to understand him. Perhaps it’s because I am so fine tuned to him after 11 years of being his safe place. But I just know that I get him – because I’m his mum! We are interlinked. He trusts me; and relies on me to get through his day and that leads to something wonderful and unique as a mother. Yes things are tough but there is so much to be thankful for too. When things are good, they are amazingly good. However, as ever life has a habit of throwing little obstacles in our way, like this week for example –

Rather inconveniently I developed a painful mouth abscess on the nerve of my tooth (that I really could have done without). But as a result I had become shattered on the medication, and had to keep sneaking off to my room as a way of coping with the pain. It hurt to talk, and move my head, and you could say I was feeling pretty sorry for myself. I am ashamed to admit my kids ate take away on a school night, and ready meals that pinged in the microwave! My floor didn’t see a hoover for three days… and, well, my hair didn’t see shampoo for three days either if I’m honest!!

As the days passed and the routine of home disintegrated, I could feel my son’s anxiety ramping up as a result. He was stressed and worried about me but just couldn’t express it. I had become distant because of the pain; his routine was out of sync and I was being a rubbish mum.

After a particularly manic half hour, in which I was close to losing the will to live – whilst trying to get him to take a shower, my son (who, bear in mind has Autism, and struggles to express himself) floored me with this comment-

“Mum, I feel your distress like a whale call.”

It hit me – Just like I feel his worries and pain, he feels mine.

He couldn’t explain that it was making him anxious; or defiant, he just knew he could feel it. He could feel something wasn’t right. Like a whale calls out to its mum in the ocean. It’s just his instinct.

I realised that, just because he is Autistic – and he can’t always articulate how he feels, that doesn’t mean he isn’t feeling it. In fact, if anything I think his Autism amplifies his feelings all the more.

My girls – Yeah they gave tea and sympathy. But my son… he felt it. He felt a knot in the string that connects us, no words or explanation needed… He just felt my distance and it confused him. His instinct told him something was out of sync.

There’s so much about Autism we don’t understand: wonders and talents that lie yet undiscovered in our kids. My son seems to feel the world around him; it’s all amplified. He smells and touches and sees things that I take for granted. So what that language doesn’t come naturally to him, because he works on an instinctive level that I can only glimpse when I view the world though his eyes. Children like my son have a lot to teach us about relationships and love. He just feels it. He doesn’t overanalyse and complicate with words. He feels the bond he has with others and holds on tight… just because!

Mrs M

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Read more from Ms. M. by visiting her blog http://asliceofautism.blogspot.com/ or like her Facebook page https://www.facebook.com/sliceofautism today.