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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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5 Things That Can Help You Stay Calm During an IEP Meeting

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For me, staying calms equals winning.

When my son was younger, I could easily be close to tears before I even walked into an IEP meeting. Many of us know what an emotional rabbit hole this journey can be, and as parents ,we are coming from a much more vulnerable vantage point than the Principal, Director, teachers, therapists and entire team. Hopefully, they care deeply about your child (most do), but since they aren’t emotionally invested the way you are, they have a different perspective.

1. Listen before speaking.

Let the team speak first. Let them give you the update, express their thoughts and give you their intended direction before saying anything. Remember, listening is not agreeing. It’s demonstrating strength and control over your emotions. An overly emotional person can struggle to work collaboratively or if needed, disagree respectfully.

2. Address one person at a time.

After listening, think and speak thoughtfully. Try not to be impulsive or blurt anything out. When you do speak, look directly at the person you are addressing. This alleviates the potential “them vs. you” mindset (on both sides of the table) and moves the conversation to a more one-on-one discussion. For instance, if you have something to say regarding your child’s speech, look and speak directly to the speech therapist.

 

3. No matter what you hear, continue to stay calm.

Sadly, in some cases, you might hear the most outrageous statements or flat out lies during an IEP meeting. This can be absolutely infuriating. It will be all you can do not to yell out, “Do you even have a degree in special education?” But don’t do it. It might make you feel better momentarily, but it won’t help.

Before my son went to his current school (which is amazing and they have always had my child’s interests at heart) I sat in a meeting where a psychologist told me my son’s IQ scores were low because the demands from 3-year-olds to 5-year-olds increase. Huh? Basically she said, “He was smart when he was 3 but now that he’s 5 he’s not smart anymore.” And she said it with a sad face, like, “Sorry to be the bearer of bad news.” Of course, it turned out she was wrong, but at the time I just wanted to scream at her sad face.

4. Stay calm and know the truth will come out eventually.

5. Be firm and friendly.

If you disagree with anything said during the meeting, go ahead and speak your mind, but in a firm and friendly way. For instance, if you hear, “We feel the three year evaluation isn’t needed because services aren’t going to change…” Instead of saying something like, “Why would you not do the evaluation? Isn’t it the district’s responsibility to evaluate every three years?” You could say, “I understand you feel it won’t make a difference, but we might not always be in this district so I’d like to have the full evaluation in case something changes. Can we set a date for the full evaluation today so I can let my son know when to expect it?”

This is less confrontational and allows them to meet the requirement without assuming there was any malice on their part (which there may or may not have been, many school districts are great, but sadly, some are misinformed and/or have no budget for special services so are constantly coming from a place of resistance).

Ultimately, staying calm and non-emotional is hard. As a parent, it’s practically impossible to distance yourself from your own child — from what is essentially your own heart.

However, once you recognize your vulnerabilities as a parent, you can take steps to listen, speak slowly and stay calm to stand your ground during IEPs. By doing this, you can emerge from the IEP meeting as a valuable and necessary part of the IEP team. And that, in and of itself, sets a course for your child in the right direction.

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Thinkstock image by MariKu

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How My Son’s Autism Diagnosis Saved My Marriage

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My husband and I had a rough start. We had a six month old when we got married and no idea how to be parents. A difficult pregnancy was followed by colic. Sleep deprivation turned to postpartum depression. We bickered. Hell, who am I kidding, we fought. I thought he was doing it wrong and he thought I was doing it wrong. Before I knew it, I was pregnant again despite the birth control pills I took every single morning. Then there were two. Two beautiful, happy and healthy boys.

Why were we struggling?

My postpartum returned with a vengeance just in time for my husband to injure his back at work. No matter how hard we tried, we struggled. Marriage counseling seemed to make things 10 times worse.

Then came the speech therapy, hearing tests and evaluations. Why wasn’t our son talking? We went from having a 2-year-old who didn’t speak to having a 3-year-old who didn’t speak. We already knew we had failed each other, but had we failed our children, too?

Did I not read, sing or talk enough to Henry as a baby? Was I so consumed with my depression and insecurities as a new mom that I forgot to nurture him? Maybe our arguing traumatized him. We blamed ourselves. We blamed each other. We were past the anger, passion and disappointment. We were past divorce. Why were we still doing this?

We knew why. And no, it wasn’t just because we loved each other. You see, we both came from tight-knit nuclear families where our parents stayed married. We are both bound to that bit about “the good times and the bad.” We watched our parents struggle and stay together. So that’s what we did. We lived moment to moment in the chaos generated from two exhausted parents and two active toddler boys, and we worried. We worried for Henry. He was 3 and still not talking, at all. The questions hung over our heads like ominous rain clouds. The guilt and self-blame blanketed our house like a thick morning fog. Is he autistic? Will this be the straw that breaks the camel’s back? Was this the end of my little family as I knew it?

It was.

My family was forever changed the day my son finally received his autism diagnosis. We expected our lives would fall apart, along with all of our dreams for our son. But that’s not what happened. Like looking through a pair of binoculars as they come into focus, we saw our pixelated lives become clearer and brighter before our eyes. We had stumbled and fell face-first into the one thing we weren’t looking for, clarity.

 

Clarity can be quite jarring at first if you’ve ever experienced it. But once you catch your breath and take a look around there is quite a view. I could see it all clearly for the first time. Instead of the massive panic attack I expected, I let out a sigh of relief. It wasn’t my fault. It wasn’t my husband’s fault. We weren’t bad parents. Henry wasn’t an unhappy child. He was autistic. We didn’t struggle as parents because we were weak. We struggled because it was hard as hell. We fought because we were afraid and had no answers as to why our lives seemed just an ounce or two heavier than those around us. We were out of control, but now — now we had an answer. Initially it was a terrifying answer, but it was far less debilitating than the thousands of questions that had haunted us for so long.

Autism is going to challenge all of our lives forever, but you know what? That’s OK. I can deal with anything I can google. Before the diagnosis, despite scouring the dark corners of every mom chatroom known to man, I had no answers. I didn’t know. But now I do. I wasn’t a bad mom — I was a mom to a child with a disability. I finally had a clear view of the uphill battle ahead of me, and I’d take that over ominous rain clouds of impending doom any day.

My husband wasn’t in denial, he was doing the best he could. It was my own fear that had pushed him so far from me. Deep down I had some animalistic maternal fear that once my mate discovered our young had a disability, he we would abandon him emotionally. Would he give up on him, love him less or look at him differently?

The day my son was diagnosed these fears evaporated into the clearing sky. My husband may not be a big talker, but he is a damn good father. I saw him show up for our son in a whole new way. He was stripped of his impatience and frustration. He stood in front of me, vulnerable, wearing only his love for our son, as it pounded through his beating chest. Seeing my husband love our son unconditionally, support him and accept him in the face of so much fear, made me fall in love with him all over again. This was the man I married.

For the first time, I could see the moments between the meltdowns. I could see the forts and tickle fights. I could hear the laughter. It was always there. Suddenly, all the scattered pieces of ourselves came together and formed a perfectly completed puzzle; it all made sense now. I thought an autism diagnosis would destroy us. It ended up being the answer to a thousand questions we did not even know to ask. Instead of ripping us apart, it was the glue that put us back together again. Our son needed us. We needed each other. We had a new journey ahead, and while it might have been the road less travelled, we would traverse the changing landscape as it came, together, in good times and in bad.

Follow this journey at Diaper Diaries

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When It Comes to My Son With Autism, No Victory Is Too Small

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When my son approached one of his peers at the end of the school day and said, “Bye, Jamie,” my heart melted. I couldn’t believe what I had witnessed. Not only has my son never shown interest in other children, he has never independently gone out of his way to talk to another child without prompting. As we left his classroom, I gave him a big hug. What a moment!

Max struggles in the speech and language department and he has little social communication skills. He is capable of sharing his wants and needs, his disdain for certain foods and his love for riding escalators and shopping carts. He likes to sing. However, the one thing I yearn for is to have a conversation with Max — but it’s not a skill he has at this time. So when he recently asked to play with my iPad, I told him he could play with it another time as it was up in my bedroom. He stopped what he was doing and said, “Mommy, go get it please.” I nearly fell over, I was stunned.

 

I’m not so big on my son occupying his time with the iPad, but on this occasion, I raced up to my bedroom to retrieve it. I wanted to reward him, he deserved it.

What may seem small to most was huge to me. I was thrilled. A spontaneous and meaningful conversation! It was short, but a first step, a small victory.

Some of us who parent kids on the autism spectrum have come to see what may seem ordinary, as our extraordinary.

Celebrating the small victories matters. It gives us another reason to stay positive and to feel excited about our children. Yes, our kids have their challenges, but they also have their strengths. Every achievement is a victory and another step in the right direction.

So the next time your child does something big or small, celebrate! Do a happy dance. Share the news with a loved one or just step back and enjoy the moment.

What small victory are you celebrating today?

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How Learning Social Skills Can Help Autistic People

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There was a recent study where researchers used a fMRI machine to study brain regions responsible for social abilities on people with autism before and after a five week social skills camp (one hour, twice a week).

The results were groundbreaking. Social skills training actually does help improve emotional recognition. That means that teaching us how to interact with neurotypicals will make us better at noticing when we’ve upset them.

Do you have any idea how huge this is? It’s obvious to many of us that this is the case, because we tell each other this all of the time in our support groups, but science has made it official with brain scans and experiments. This has been a great month for autism awareness.

Social skills play a huge part of our everyday lives. People with autism often have difficulties interpreting others, causing misunderstandings. The sooner we learn the skills we need to cultivate relationships, the more successful we are as adults.

There is a lot of focus on making our lives easier by controlling our “symptoms,” but another aspect of autism is our difficulties with the social world around us.

Bullying on the Spectrum

I remember elementary school like it happened yesterday.

In first grade, I made friends with this kid named Micah, who would translate different social customs for me. He was the first friend who would do this for me, and his social status protected me for a little while.

I moved a few times between second and fourth grade. I found it hard to make friends and I constantly faltered. The end of elementary school was tougher because I wasn’t sure about the other kids. I would think that they were my friends and they would make fun of me, and once I figured out they didn’t like me I would just stop hanging around.  I spent recess doing solo jump rope.

Middle school was ruthless. We moved again right before sixth grade, and I remember my first day someone made fun of me for my accent and haircut. I stopped telling my parents when people were making fun of me because I felt like I was constantly complaining. We moved again and I managed to make some friends, who helped me navigate though teenage girl evil plots.

63 percent of children on the spectrum experience bullying. These children will become adults, and they need those support services now, not later, because the sooner that kids get the social support they need, the quicker they’ll progress to emotional recognition. We need to get schools involved with changing policies and advocate for these children. The more apt they are to recognize their peers’ emotions, the less likely the are to be made fun of.

I believe this, combined with the anti-bullying movement, will produce peaceful, intellectual progression.

OK, so how do social skills affect empathy with autistic people?

Learning social skills is learning empathy. We don’t want to hurt people’s feelings, the same way a student doesn’t want to fail a test. When the student cannot pass the test, the teacher needs to teach the student in a way the student can understand. The very notion that teaching us about you will make us more apt to recognize your pain is the meaning of learned empathy.

The more skills I acquire, the more I’m able to see in “real-time” what’s happening with any one person. For example, I can see when someone is anxious based on risen shoulders, quickened speech, flushed skin. I just have to wait for a conversational exchange so I can hear if they are going to tell me about their anxiety or if the conversation is intellectual in nature.

Learning social skills made me quicker and smarter. When I’m not anxious about the situation, my brain pulls information so much quicker. Anxiety always slows me down. I can’t think straight when I’m emotional, and emotional includes being anxious because I don’t know what to say or do.

When I was younger and less “empathetic”, I used to “comfort” people who were crying to me by saying I wasn’t sure how what to do about them crying. And I would say it awkwardly with my hands like sort of waving, and a half laugh. Then I would reach out my arms like I was going to hug them, and then pull them back over and over because I don’t like to be touched when I’m uncomfortable — until eventually I verified if my next move should be a hug. It was a mess.

How to Help

Awareness alone is not enough. Neurotypicals have to educate themselves about autism and social differences to expect. People on the spectrum have to have acceptance. It’s a basic human need.

I believe in order for us to change the world together, we must first be willing to change ourselves. Both neurotypicals and autistic people alike must be willing to adapt our own thought patterns to those around us, and look outside our own perspectives. It’s important to accept each other’s quirks and flaws. Even if we aren’t born this way, we can learn.

Mindfulness is essential to change the self. Practicing mindfulness has health benefits, social benefits, and emotional benefits.

Are you on the spectrum? Do you force eye contact to make the neurotypical feel comfortable, even though it hurts and you’re suffering because of it? Do you refrain from stimming because you don’t want to seem weird, even though it’s tough to concentrate while holding it in? Do you choose to remain silent because you don’t want to make waves or be put on the spot, even though the subject is your special interest?

Don’t let social anxiety get in the way of you being yourself. In order to bridge a gap, both sides must build toward the center.

Are you interested in attending a camp like the one in the study? Here are some options.

Social Skills Camp Scholarship Program

 Follow this journey on Arianne’s Work.

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Photo by Pixabay.

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