My Son's Autism Is an Invisible Disability

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My son’s autism is invisible. When I first expressed my concern that Henry was two and had only spoken two words and had stopped saying them months ago, our pediatrician told me Henry looked just fine to him. Yes. A pediatrician. While it’s frightening that a medical professional, one I love and respect, could not see past the invisibility of my son’s disability, I can’t fully blame him. This is human nature. For many of us, seeing means believing. And not seeing, not knowing, terrifies us. We can find the worst parts of ourselves when we are faced with the unknown. I am guilty of the same well-intentioned, yet harmful misconceptions.

Before my son was diagnosed, when I first moved into my current home, there was a man who walked by my house, a lot. Back and forth, he walked past my house. My instinct was to lock my doors. Weeks passed and I began to see the man walking everywhere, all around town. I remained cautious. A few months later, Henry received his diagnosis, and I began to learn all about autism spectrum disorder.

 

One day, as I drove down my street and passed the man pacing my block, it dawned on me. Maybe he is autistic. Maybe his repetitive behavior that soothes him is walking. What if one day Henry finds comfort in long walks? What if someone sees him, misunderstands his behaviors and judges him? What if they are afraid of him? I began to look on this man with compassion; I began to look upon him with the same kindness that I can only pray that others will bestow upon my son. I haven’t seen the scary man surveying my neighborhood in a long time. However, I do see a man who is minding his own business, and enjoys long walks around my neighborhood, quite often.

Autism can be invisible. This fact is a double edged sword. It will help my son in life, and it will hurt him at times. The fact that one cannot see his autism spectrum disorder, will at least impact how people will judge him. It will also leave him vulnerable to misunderstanding and unsolicited judgements. So much of how we deal with situations and people is based on our perceptions. Sometimes our perceptions are born from experience, knowledge and our personal ideologies. But sometimes they are born from fear, misunderstanding and ignorance.

How do we reconcile these conflicting motivations from our perceptions? We can begin ceasing our efforts to identify the disability. Education is wonderful, and I’m all for it. We should all educate ourselves about disability. But even a thorough education can be insufficient in identifying certain invisible disabilities. You could not possibly identify every disabled individual’s personal symptoms, traits, idiosyncrasies, self-regulating and repetitive behaviors. Autism spectrum disorder can be a great example. It is an umbrella diagnosis, meaning it encompasses a wide range of symptoms, and each individual’s coping mechanisms for these different symptoms is unique. In other words, it’s a mixed bag. And they don’t say, ” if you know one person with autism, you know one person with autism,” for no reason.

So if we cannot possibly learn how to identify each individual’s invisible disability through self-education, then what can we possibly do? Instead of looking for the disability in others, look for the humanity you share. When you see someone who looks different than you, or even someone who looks the same as you, and you don’t understand them and your instinct is to runaway, or stare, or judge, try not to. It’s that simple.

Instead of looking for someone’s disabilities, look within yourself for what we all share. Compassion, kindness, acceptance — they are all at your at your disposal. There is something even more fundamental than education in life: humanity. Sight can be one of our least reliable senses. Our hearts, however, are fully equipped to see what our eyes cannot. Close your eyes, open your heart, and you will see more than an invisible disability — you will see people, beautiful people.

Follow this journey at Diaper Diaries

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My Daughter's Autism Diagnosis Didn't Break My Marriage, Ignoring It Did

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This is the story of a single mum raising her 3-year-old daughter who is on the autism spectrum.

At the age of 1.3 years, my daughter was diagnosed with autism spectrum disorder. My husband, at the time, did not believe it. He thought the diagnosis would wreck our daughter’s future and that if we “ignored the label” she would be better off.

I refused to give in to his plan and decided to take her to all the possible (limited) therapy programs provided in the country we live in. I took her to various occupational therapies, speech and even ABA sessions. The articles I read on The Mighty by parents who put the time and effort to share their stories for people like me, made me more hopeful and more accepting of everything related to my daughter’s condition. It taught me that it’s not something we should hide away as if it’s something to be ashamed of.

My husband refused to participate in anything related to her well-being or even daily routine. Which just prepped me and gave me more time to practice being the single mum I currently am. The autism diagnosis didn’t break my marriage, ignorance did.

All those nights of me listening to the negative comments of how my daughter can never be “normal” and “isn’t acting like children her age” made me stronger and more determined to focus on her, and only her. I devoted all my free time to being the only caregiver and to support her in every possible way.

My daughter is now 3 years old and her speech and social skills are improving dramatically through the continuous sessions she is taking.

 

As parents, having a child on the spectrum is challenging because of the stages we have to go through.

1. Acceptance.

Accept autism is not something to “swipe under the rug” or something to be ashamed of. You have to realize wishing it away won’t help, it’s there and it will not go anywhere. We gave birth to miracles and they stand out more than anyone else and that to me is something to be thankful for.

2. Acknowledging our work can be twice as hard as other parents handling toddlers who aren’t on the spectrum.

It’s never ending, the routine could break us down at times, but we manage to get back up again. We believe no one else can do the job better than us and this is what keeps us moving forward. Our kids can see those invisible capes behind each of us. Just know you are fit to do it.

3. Patience.

Our kids’ behaviors are not “on purpose,” our children are not spoiled as many people tend to think. And you know what? Who cares what anyone thinks! Jump in that bubble with your child and live there.

4. Our kids know.

No matter how young your child is, they can feel us, and they know how we are feeling even if they don’t show it. My daughter can be the most affectionate and the best at showing it through those random hugs and kisses that she tends to surprise me with.

For all those single parents of children on the autism spectrum: hang in there, it’s doable. Focus on all the good moments you share with your child. Those moments count. Take it one day at a time. It’s better to focus on your miracle than give in to the denial of a spouse who thinks ignoring something might make it go away. We are all our children need, and we are enough.

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To My Grandson on the Autism Spectrum on Your 3rd Birthday

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My dearest Noah,

You are 3 years old now and I can honestly say I’ve never met another little boy like you. Your striking blue eyes and beautiful blonde hair makes you look angelic. But looks can be deceiving.

You are fiercely independent. In a way I’ve never seen before. Your refusal to ask for help can sometimes get you into trouble, too. If you see a cookie on a counter that is out of reach, it becomes your mission to acquire that sweet treat. You become James Bond. I can hear the “Mission Impossible” theme song running in my head as I watch your little mind figure it out. Only no mission is impossible. I’ve never seen a child who can scale a cabinet wall like you. You will use the drawer handles like rungs on a ladder and be on the kitchen counter in a matter of seconds. I’ve even walked in several times to find you standing on the breakfast table, holding your hands up to literally hang from the chandelier. It’s very scary for us but you seem like you are not only fearless but completely at ease with heights. You seem to have no sense of danger. Even after you get hurt.

Your insatiable desire to go outside is another constant worry of mine because you will walk out the door and just run if you find the tiniest opportunity at any time of the day. You just run. Down the street. Laughing and giggling and going as fast as your little legs will allow. I know. It’s happened. Your mommy has turned around to see the front door open and ran out to find you two houses down like you had just escaped from an enclosure and were feeling freedom for the first time.

One of the many thing you’ve learned this year is to stroke a persons cheek as a sign that means, “I love you.” Just the other day while playing, you stopped in your tracks, looked me directly in the eye and stroked my cheek ever so gently, “I love you.” It makes my heart skip a beat every time you do it. Your eyes seem to see straight to my soul. It is truly incredible.

You are a light, my dear little wonder boy. A light that shines brightly. I am in awe of you. And it seems that, just like light, you are everywhere all at once. All the time. You are like a stealthy little cat that finds it’s way into situations that are unbelievably remarkable or dangerous or sometimes just plain gross. The problem is, you don’t have nine lives.

You are a conundrum of sorts. An enigma. You have a different way of communicating with us. Why do you run endless loops around our living room? Why do you giggle hysterically while you do it? Why do you speak gibberish to the fingers on your right hand, as if you were having a conversation with it? Why do you sometimes sink back into your world and seem not to notice us anymore? When will you talk?

My mind races when I think about your future and all the possibilities it holds. And the impossibilities. I think about all the doors that will have to open for you, and of course, all the doors that might remain shut. I think about the difficult road you have ahead and relish in the fact that right now, you are only 3 years old. You are happy. Centered. Whole. Healthy. And so full of joy. The world has not shown you it’s cruel hand yet. I hope we can protect you from it for as long as possible.

I think you have secrets. Secrets to happiness. And the rest of us want to know what they are.

I love you my little Noah.

Happy Birthday.

Follow this journey at gmawandnoah.com

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7 Tips to Help Your Son on the Autism Spectrum Cope With Haircuts

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In my experience, a common issue for boys with autism is having their hair cut. Often, a hair salon is a busy and noisy environment. People coming and going can be enough to make a person with autism feel over the edge. The environment alone is just one factor, you then have the quandary of how to get them to sit in the strange chair, still, I may add, for the 20 minutes it takes to cut their hair.

Then the anxiety of how they will look different once it’s cut and looking at yourself in a mirror, topped off by the noisy clippers that come out of the holder.

Imagine.

The water spray, the noise, the people, the chair, the mirror, the noise, the clippers, the comb in the hair, the people, the hair dryer, the water, the talking, the mirror.

You can imagine how this could be a nightmare for a child on the autism spectrum. It can also be the parents nightmare as you struggle to cope with staring eyes, apologizing to the hairdresser as your child freaks out, screams, cries and leaving with no hair cut.

I’m not saying this isn’t an issue for a parent with a female child with autism, but a girl with long hair is socially acceptable.

I’m here to tell you it is socially acceptable for your boy  to have long hair, too.

Please, don’t resort to extreme measures of cutting your son’s hair in his sleep. Can you imagine yourself going to bed one night and waking up to your hair missing? No? Me either. In fact if it did happen to me I’d be in a police station reporting a crime. Just because you are a parent doesn’t make this OK. Your child is a person, too.

So how can you deal with your son’s hair?

 

Here are a few solutions:

1. Have a mobile hairdresser come to the house where you child can be groomed in a familiar environment with an iPad, computer game or favorite toy nearby — and less noise.

2. Rock the long hair look. Boys can have long hair. It’s OK.

3. Contact your local college and see if they have any adult education classes in cutting men’s hair. Then do it yourself, in your child’s own time.

4. Write a social story for your child, take pictures of the salon, the hairdresser, and prepare your child as much as possible.

5. Talk to the hairdresser, explain ahead of time the difficulties your child may have and see if you can come up with solutions together. Counting the cuts of the hair might help, or allowing the child to move freely around as they need to.

6. Investigate quiet clippers. If your salon doesn’t carry them, buy a pair of your own and take them with you.

7. Check out “autism barbers assemble” on Facebook.

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A Letter to Myself From the Other Side of My Sons' Autism Diagnoses

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Dear Me,

Today was one of the toughest days of your life. Today you found out that your beautiful boy has autism. Future me would love to go back in time to tell you how things will work out, so here goes:

The first thing you will do is blame yourself. You will spend months trying to work out where you went wrong. This was a complete waste of time and energy. The possible causes of autism vary from week to week, but one thing is for sure, it is no one’s fault. Some days you will think “why me,” but most days you will embrace what feels like chaos.

You will learn society does not value carers. You will give up your job to become a full-time carer. It is down to you to help your children achieve their best possible life when you are gone. You will struggle financially, physically and emotionally. You will have to become your child’s project manager — making phone call after call, writing letters, filling out forms, lodging appeals, keeping accurate records. In order to create change, you will have to put your family “out there” to the media, something you have no training in and that does not come naturally. You will quickly realize the system you thought was there to catch you will often work against you, and this will become a major source of stress and frustration.

The next thing you will do is look for other mums like you. You will discover Facebook is a lifesaver for people like you who feel socially isolated. You will quickly connect with other mothers and this will be your greatest source of information, comfort and reassurance. Your old friends will fall away one by one, maybe because they don’t understand your new reality. The new friends you make through autism will be there for you no matter what. They will stand beside you and hold you up when you are at your lowest. You will be accepted with all your raw emotions. You will be able to bring your children to their houses without fear of being judged. You will learn to scope a room for potential “danger” quicker than any FBI agent.

 

The professionals you meet in the early days will show you how to ease sensory issues, how to encourage speech, how to figure out what triggered the meltdown. You will panic when you hear about early intervention and wonder if it’s already too late. It isn’t — the brain is capable of life-long learning.

Over time, you will learn about autism just as if you were learning a new language. You will discover that sounds, smells, touch and taste are experienced differently by people with autism and this can quickly become overwhelming. Over the years, you will work hard to manage this. Harry will eventually be able to tolerate hair washing, hair cuts, tooth brushing, nail cutting and even get used to the feel of clothes.

He will show you a side of yourself you didn’t know you possessed; the ability to intuitively know how he is feeling and what he needs even when he doesn’t have the words to tell you. You will achieve this by using visual schedules, introducing one new skill at a time, breaking it into small stages and repeating them until he “gets it.” You will celebrate every small victory like you’ve won the lottery. You will meet people who will go out of their way to help you — teachers, tutors, therapists, special needs assistants, hairdressers, dentists, shop keepers — all of whom are willing to be patient with your child as he learns. You will be forever grateful to them.

Along the way, you will learn your younger child, Gavin, also has autism. You will learn every person with autism is different, just as every human is different. You will learn to be patient but relentless. You will survive with practically no sleep. There will be days when you are so exhausted and depressed you think you cannot go on. Your own health will suffer because you don’t get enough practical support. Your immune system will start to work against you. Some days will be all about physical pain. Through all of this, you will learn the true meaning of unconditional love.

Most of the time you won’t consciously think about autism because first and foremost they are your children and this is your “normal.”

You will see the true definition of courage as you watch your little boy walk into a strange environment and hold himself together, even though all his senses are being assaulted simultaneously.

Eventually you will learn to be your children’s ultimate advocate. You will learn there is no professional who can tell you more about your children than you already know. You will learn to be tenacious and unrelenting in the search for support. There will be people who will try to belittle your struggle for support, but you will not give up.

You will learn to speak plainly and clearly without using euphemisms so as not to confuse your children. You will find an amazing school in your local area, where every person your children comes into contact with values them as much as you do. You will find yourself supervising homework and remember there was a time when you didn’t know if Harry would ever be able to speak, let alone read or write.

You will understand autism is not an excuse for bad behavior. There is a world of difference between a sensory related meltdown and a tantrum. You will be confident enough to trust your own judgement on this.

You will develop the “death stare” for people who make uneducated comments. You will know hand-flapping, spinning, repeating words and phrases or noises are your child’s way of calming themselves and should never be discouraged. You will never let anyone try to force eye-contact on your child. You will know any sound is a precursor to speech and all new speech is good (even cursing). You will know all behavior is communication and with practice, some meltdowns can be intercepted and avoided.

There will be so much work to be done. You will need more support than you get but you will keep going because there is no other choice. You worst fear is dying and leaving your children behind with people who won’t accept them as they are. You will never stop trying to find new ways to teach your children to live independently and you will never stop hoping they will achieve this level of autonomy.

You can do this.

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Hearing 'Mama' for the First Time From My Son on the Autism Spectrum Was Worth the Wait

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Henry babbled as a baby. He met all his milestones early but at some point unclear to me things got quiet. He said, “ball” for a week and then said it no more. He said, “hi” a month later and then silence. I searched within the “goos” and “gagas” for some meaning or code I could solve in order to communicate with my son. As the months went on, the unanswered questions piled up like dirty laundry in my brain. Will he ever talk? Is he autistic? Will I ever hear him call me “mama,” or tell me he loves me in return?

I knew Henry was a late talker, I knew it two years ago and proactively got him into weekly speech therapy and child development therapies. However, it was not until my younger son was born that I could see Henry’s disabilities in bright flashing neon lights and I could not look away. The baby’s babbling didn’t dissipate, it sustained and it grew and then the day came when he said it. “Mama.” Instantly bittersweet pangs of joy and sadness filled me up completely until they began running down my cheeks. I shed tears of joy over hearing my sweet baby call me “mama” for the first time, and I shed tears of sadness because I had not heard it from my sweet Henry. The sad and happy tears pooled together in my eyes, making it difficult to discern one emotion from the next. The paradox of motherhood stained my cheeks for a brief moment before being swept away by an aloof and apathetic hand, eager to shut down the inner conflict. I didn’t know what to feel.

In the last few months, Henry’s babbling increased, and to our amazement, Henry’s voice slowly and ever so cautiously came out. One by one, he began to try and identify objects, colors, shapes and so on. But no “mama.” He couldn’t say it, he wasn’t ready. He was doing so many new things. He was growing right before our eyes. We cautiously celebrate each word or approximation, not knowing what diagnosis could be thrown into our lives, when the next word will be spoken, or if it will get quiet again.

 

Yesterday morning, I had no more answers than the day before, or the year before that, but as my beautiful mild mannered boy walked into the kitchen and grabbed my hand to lead me toward what he wanted, he looked up at me with those big blue eyes and said, “mama” and he dragged me out the room. I didn’t drop to the floor, nor did I begin to cry. I needed to process what I had just heard. Did I really hear it? Am I imagining it like I have so many times in my head? Would I ever hear it again? I was so guarded, turned off, protective of my heart that I could not believe it. “Don’t get excited. Don’t get your hopes up. Don’t tell anyone. Don’t jinx it,” I said to myself. But this was so much bigger than my fears. This was so much louder than my doubts. This was everything. My 3-year-old gave me hope with one word.

I still don’t have a definite diagnosis and I am still looking for answers. Yet, upon hearing my nonverbal 3-year-old call me “mama” for the first time, I was reminded of something I had affirmed away with fear and doubt. But in that moment, looking into my son’s eyes as he called for me, I was excited. I wanted to tell everyone and I wasn’t afraid of jinxing it, because it was real and nothing could ever take that moment away from me. It was worth every moment of disappointment, fear and doubt I had to go through to get there. There is always hope.

To all the mamas out there worrying, waiting and worrying some more, I can’t stop you and I wouldn’t dare try. We will always worry, and we can’t help but wait for the rare moments that make all the worry worth the while. But keep your hope close. Know life will surprise you when you least expect it and often our burdens are our blessings. I don’t know what comes next for us, but my hope allows me to live in the unknown for one more evening, put the unanswered questions to bed along with the kids, and know I am his mama, and that is enough.

Follow this journey at Diaper Diaries

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