christmas ornament featuring babys photo

Autism Didn't Change My Dreams for My Son

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Yesterday was decoration tear down day, which is always a bit of a downer, so my husband and I cranked some classic rock music as we painstakingly made Christmas disappear. Hearing the screaming wail of Axl Rose helped me swiftly pack Bing Crosby up until next December.

One of the last decorations I took off the tree was our son Ryan’s first Christmas ornament. And it brought about a wave of nostalgia — but also, more importantly, clarity.

young boy at the beach

For years, I would look at old photos of Ryan and see them in one of two ways: “Before Autism” or “After Autism.” Yet today, for what felt like the first time, I looked at this photo and only saw my beautiful baby boy. A boy for whom, in 2001 (years “Before Autism”), I dreamed a bright future filled with happiness, love, good health and acceptance for whomever he would one day become.

None of those dreams changed “After Autism.”

Sure, upon hearing “the A word” for the first time, I believed the dreams I once held for my son would now be different, and in some ways they may be — but the dreams that changed in my head were never his dreams; they were mine. In all the ways that matter — really, truly matter — my dreams and his dreams didn’t change “After Autism.”

So as I packed up Ryan’s first Christmas ornament from 2001 safely in the ornament box with the lyrics of “Sweet Child O’ Mine” playing loudly in the kitchen, I smiled happily knowing my dreams for Ryan in 2017 have as little to do with autism as they did in 2001. I still dream for him to be happy, healthy, loved and accepted.

Yes, there may be challenges I didn’t anticipate that first Christmas all those years ago, but I knew then, just as I know now, that I would do anything and everything to help make Ryan’s dreams come true. Autism didn’t change that.

I would like to think this moment of clarity will remain with me throughout the new year and into the new years yet to come. I hope going forward I will no longer look at photos of Ryan and see “Before Autism” or “After Autism,” that I will only see the baby, the toddler, the adolescent, the teenager and, one day, the man who was — and is — happily living his dream of being loved and accepted. And recognizing that regardless of age or time, the beautiful smile shining brightly from each and every photo was directed at me, the person he trusts most to always see him, not autism.

Images via Contributor.

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My Children’s Differences Are Not Something to Apologize For

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When you become a parent there’s no manual; there’s nothing that can truly prepare you to care for another human. When I became a special needs parent, suddenly there were all these “experts” — people I’d never met before, and according to them, they knew my child better than I did.

I still don’t like the label of “special needs mom.” It can come with looks of pity or curiosity. It seems to separate your family even further from others. It’s been four years since I first heard the word autism. I heard it again a few months after, this time in a diagnosis for my oldest, who was almost 9 years old at the time.

I’ve tried to find support, or maybe just people who could relate to my family, but it became apparent to me that I didn’t share the same views as some others.

I don’t see my children as “flawed”!

I don’t see them as “broken”!

I see no reason to look for a “cure”; being autistic isn’t a disease.

I see them as kids in need of support, in need of accommodation. Kids who deserve understanding and recognition for their talents.

I celebrate their strengths, and I celebrate their accomplishments.

Then, I’m smacked in the face with what society — or “experts” — believe of my children.

Today, I sat through an evaluation that lasted well over an hour with all these questions that seemed to aim to put my kids into a smaller box, focusing on what they can’t do or if they react differently than their peers.

I left feeling sad — not for myself, but for my child and how the world appears to view them. It bothers me still as I lie awake at 2 a.m.

“Does the child color in the lines with few mistakes?”

“No! He writes numbers,” I answered. He looked up at me puzzled.

“Has he not been taught?”

“He has, but he’d rather draw numbers, and now he’s discovering math, and these numbers can do more than he first realized. It’s very exciting for him and myself. I encourage his strengths.”

Does it really matter that my child would rather write numbers than color the picture you put in front of him?

I think it’s time we stop trying to put these children into a box that might make others feel more comfortable.

It’s time for acceptance!

No more apologizing for these differences!

No apologizing for coloring outside the lines.

Image via Contributor.

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When My Student Said 'I'm Glad I Have Autism'

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This past semester, I have been a special education para in an elementary school. Let’s just say, no day has been ordinary. My students and I have had our good days, our silly days, and our “You’re not in trouble, but I’m gonna need you to rethink that action real quick” days. But as I look back at the last semester, I can honestly say I truly value the time I had with each of my students.

One particular young man, whom I will name “A” for privacy reasons, comes to mind when I think back. A has autism, and he was my special afternoon playmate, as I would always take him to our sensory break room during his math time. The other teachers and paras told me he would be a true joy, and my goodness, he was. Some days were better than others; some days we made up stories about Skittle land, what would happen if we jumped into video game worlds, and we always tried to come up with the scariest stories we could.

I’ll never forget our first true breakthrough, however. As I picked up A from class and started to take him to the break room, I could tell something wasn’t OK. After a few minutes in silence, he told me a new refrigerator was being installed in his house that day. A is not one who enjoys change, and it really bothered him, knowing his fridge would be different by the time he got home from school. We talked through the pros and cons of the change, and even imagined what we thought the new one would look like. It may sound silly to some perhaps, but to us, it was a truly meaningful conversation about a relevant issue in A’s life. From then on, we were pals. He was the highlight of my afternoon. His freckled smile and contagious giggle could light up anyone’s spirits. Sure, some days didn’t go so well in the break room. Sometimes we needed to spend some time in the “quiet cave” and just not talk to each other. But I think that was proof of the genuine friendship we had. All friends have rough patches, and we were the best of friends.

This was my last week as a para. I have accepted a position that is truly in my best interest for my career goals and could not pass up the opportunity. But that doesn’t mean it didn’t hurt saying goodbye to A.

A few days ago, I was wearing my Autism Avenue T-shirt, and he asked me what it said. I read it to him, and his face lit up. “I have autism!” he exclaimed. I told him I knew that, and I bought the T-shirt because I absolutely love my friends with autism. His response is something I will never forget: “Well, I’m glad I have autism then.”

Yes, this is the moment I’m crying in a coffee shop, typing this story. Because I’m also glad A has autism. It’s the spice that makes him exactly who he is. The truth is, I can’t imagine him without it, and I’m beyond grateful he understands it is nothing to be ashamed of. The confidence in his voice made me know he would be OK without me around. And while I will miss watching him dance, watching him stare at the lights on the wall, or tell his stories… he will be OK. I didn’t have to tell him he’s unstoppable — he already knew. He just needed a friend to talk refrigerators, video games, and Skittles with, and I am beyond grateful for the small amount of time I got to be that person.

Image via Thinkstock.

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8 Calming Strategies for Meltdowns

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Meltdowns are something my child and I deal with, at times, on a daily basis. It is a part of life, and you get used to them and begin to develop strategies to help your children.

Eventually, you can get to the point where you are able to recognize when a meltdown is about to occur and may be able to diffuse the situation before the meltdown becomes full-blown. I’ve found it’s all about timing and getting to know your child’s cues.

With my daughter O and my son L, there are certain things that just work, so I thought I would share the calming strategies that help us through meltdowns. Your strategies might be different from ours, and that is to be expected. Autism is called a spectrum disorder for a reason! Most of the time our strategies work, but there are times when all we can do is ride out the storm.

1. Remain calm. Always.

The main strategy we try to remember is remain calm, no matter what the situation is. This might seem like common sense, and it may be, but at times it can be incredibly difficult to remain calm — especially when your child is struggling.

We worked out very early on that raising our voices just didn’t work. O and L weren’t shocked into silence, it had the opposite effect. The louder we raised our voices, the louder they became.

By remaining calm, we’ve found we can reduce the amount of stress that is placed on O and L. The last thing a child having a meltdown needs is more stress.

2. Essential oils.

Late last year, one of my friends (thank you, Amanda) put me onto essential oils. She gave us four small blends to start off with. I will admit I was a little skeptical at first. How on Earth would oils help my little superheroes? But at that point, we had tried a lot of other things and hadn’t found anything that worked.

I still don’t know how they work, but they seem to help. Both O and L look forward to getting their oils. At nighttime, I just roll the bottle behind their ears or on the soles of their feet. The oil doesn’t help them to get to sleep, but it does relax them. I have also tried the relaxation blend, and I must admit the lovely aroma is enough to relax me. The oils have become part of their bedtime routine.

O also has a blend to assist her with her anxiety, and it does seem to help her in a small way.

I’ve since added a few more blends to our collection. You name the ailment or condition, there is probably an oil or a blend that can help. We’ve tried a migraine blend, a stress blend, one for coughs and they all seem to help.

They are worth a try if you’re out of options.

3. Know your child’s triggers and cues.

These didn’t take long to work out. Every time we went to a large, crowded, noisy shopping centre with L, he would be in meltdown mode within about 10 minutes of entering the complex. We then worked out that he was in sensory overload. L would give us cues — and still does — when he is in sensory overload and we know that when he starts showing those cues, it’s time to get him out and we only have a very small window to do so.

Knowing your child’s triggers means you can either avoid certain situations or prepare your child beforehand. If we know we have to go some where that ordinarily would cause L to have a meltdown, we prepare him beforehand so he knows what is going to happen. We also take along L’s sensory bag so he can self-regulate.

L’s sensory bag contains his weighted blanket, a pair of block-out ear muffs and a marble maze. The marble maze is a great fidget toy; L has to concentrate on getting the marble from one end of the maze to the other. By concentrating on what his hands are doing, he can block out some of the noise and busyness around him.

Other sensory toys we have used are calm down bottles (warm water, glitter glue and fine glitter), a small plastic bottle with rice in it to shake, squishy plastic balls, plastic chew necklaces and a peek-a-boo bag (fabric bag with a clear plastic window and the bag is filled with beads and small toys to find). Basically, anything that O and L can squash, squeeze, shake or manipulate. All of these assist O and L to focus on anything other than the sensory overload.

Both O and L have various stims depending on the mood they are in. Stims or stimming is a self-stimulatory behavior and is considered a way in which people with autism can calm, stimulate and self-regulate their own emotions. L’s therapists have described stimming as a way that L decompresses and releases excess energy. L also stims to calm down — it may sound strange, but by spinning he can help himself to calm down. O chews on her shirt when she starts getting anxious. Stimming can also help other emotions to show. O bounces when she is excited and swings her arms when she is nervous.

It might take a while to work out your child’s triggers and cues, but it is something that pays off in the long run. It can make outings a whole lot easier on your kids.

4. Pick your battles.

This may be fairly obvious, but at times I think it is something we overlook. O, L and I certainly pick our battles. I know if I skip O’s bedtime ritual, then she will not go to sleep. Spending the extra five minutes to run through her bedtime ritual means she’ll go to sleep quickly and quietly. And it means I get an extra five minutes of cuddles!

I would love O and L to eat a meal I cooked every night of the week, but there are some nights when I am so exhausted from the day that it really isn’t worth the stress of a meltdown to make them eat. We do have a deal going that if they try at least a mouthful of something on the plate, they can then have the good old faithful baked beans or spaghetti.

If you know you are exhausted, it might be good for your own sanity to just let them go. Know which battles you can pick, it might just make your day or night a little quieter.

5. Be there for your child.

Your child might not want you in the room with them when they’re in meltdown mode, but be nearby for them.

Be there to make sure they don’t injure themselves or others. By being there, you can reassure your child that everything will be alright.

I hope by being nearby, on some conscious level, O and L know I am there if they need me.

I don’t sit right next to O or L, as that just seems to agitate them. O and L both don’t like to be touched while they are in the midst of a meltdown; they become quite distressed. I stay within eyesight of them so if need be I can remove objects from them or stop them from hurting themselves and I can comfort them immediately if they choose to come to me.

6. Tantrum or meltdown?

One of the major keys is knowing the difference between a tantrum and a meltdown. Children with autism can be prone to meltdowns, but they can also have tantrums. The way we deal with a tantrum is completely different to how we deal with a meltdown.

I’ve found the most obvious difference between the two is your child’s ability to talk to you during the event. If they are responding to you, I’ve found they’re more than likely having a tantrum. If they are not able to respond to you, chances are they may be having a meltdown.

O makes demands during a tantrum. If we were to give into her demands, we might be reinforcing that behavior. Next time she knows if she says, “If you give me such and such, I will calm down,” she’ll just keep making demands until we cave. During a meltdown, she makes unrecognizable sounds.

By knowing the difference between the two, we are able to handle both effectively.

7. Behavior is not done on purpose; it is done for a purpose.

This is a rather important point and something I think all parents can use reminding of. It is something I regularly have to remind myself of. When O or L are in meltdown mode, I have to remind myself, in that moment, neither of them may be able to find the words to express how they are feeling or what they need.

I guess a good analogy is when a baby cries. Babies can cry for various reasons — when they’re hungry, they’re tired, they have a dirty nappy, they’re over-stimulated, they just want their mom or dad, etc. Parents, very early in, can often figure out what each cry means. A baby may not be able to do much more than cry to express what they need. We as parents need to determine what each cry means so we’re able to respond to them appropriately.

I’ve found the situation is similar with a child having a meltdown.

It can be difficult not to take what the child says and does personally. I know O and L don’t mean any malice when they’re having a meltdown; they’re not in control of their own bodies.

A meltdown can be their way of saying “I am over stimulated” or “I have used up all my energy at school and have none left for home” or “I am scared or worried or anxious.”

No child has a meltdown on purpose. I believe the meltdown serves as a form of communication. You just have to work out what they are trying to tell you.

8. Tell your child that you love them. No. Matter. What.

A child needs to be loved unconditionally; I believe that’s our job as parents. To show them they are loved, no matter what they may do or say during difficult moments.

After O or L has had a meltdown, I always make sure they know I love them. I think it is incredibly important for both of them to hear the words “I love you” after they have expended so much emotional, mental and physical energy.

I feel they need to know I am there for them, no matter what. That I will love them and be there for them, always. That loving them is what I’m here for, no matter what.

Image via Thinkstock.

A version of this post originally appeared on Raising My Little Superheroes.

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And Then Sometimes, It Hits Me: I'm Autistic

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For the most part, I am happy to think of myself not as disabled or disordered, but simply different.

And then sometimes, it hits me.

I see that much of what I have achieved and overcome throughout my life has been a direct result of being autistic, because it is such an intrinsic part of who I am. I see the many strengths that come with being autistic. The many things I can celebrate about myself.

And then sometimes, it hits me.

Since my diagnosis, I have been happier with who I am than at any other point in my entire life. Often now, I move through my day serene, with an ease I have never before experienced.

And then sometimes, it hits me.

A weekday. Late for my first meeting at work. Still not out of the house. My beautiful children clamoring for attention, delaying my exit. No time to compose myself before entering into two hours of in-depth highly technical discussion.

I arrive, and try to pick up what’s happening. Try to shift my brain into a suitable work-gear, to mentally alt-tab to an appropriate application I can use to get through this meeting.

Approaching the two-hour mark, my brain starts to fizz. The jargon, the complexity, the people talking. Hunger. Tiredness. The knowledge that I have another meeting to attend in 45 minutes’ time, with an entirely different group of people, discussing an entirely different topic, at which I will have to lead the discussion because I instigated it in the first place.

And it hits me.

I need to get out.

If I don’t leave that first meeting now, I will never be able to shift gears in time; my brain will be unable to adequately switch to a new task, a new focus. I make my apologies and prepare to leave. Awkward exchanges of thanks and goodbye. I’m never quite sure how to verbally “sign off.” Then I’m out.

A quick visit to the office, just long enough to remind myself of this other aspect of my job, my day.

My next meeting involves an ordinarily 15-minute walk to another location. Construction work means it takes longer. There is noise. I walk past the local children’s hospital on my way to my next meeting venue, and suffer that oft-experienced pang of hyper-empathy seeing children and their families, wondering what difficulties and challenges they’re having to bear. That agonizing feeling of pain at the suffering I imagine others are feeling.

It hits me.

The air conditioning in the next meeting room is old, poorly serviced, and far too loud. The sound is like an aircraft taking off; except it’s continuous, relentless. There are no windows, no visible green. I crave all things green; green keeps me grounded, relaxed, peaceful. I focus on my colleagues’ mouths as they speak, only ever briefly glancing at their eyes.

I somehow succeed in getting the outcomes I need from the meeting. I’m able to communicate effectively enough. To the outside observer, the exchange will have appeared well-managed, efficient, and successful.

But I cannot go back to the office just yet. It’s lunchtime, and my packed lunch is in a bag under my desk in another building, but I need to sit somewhere else – somewhere anonymous. A café. Get down my thoughts in a blog post. Consume coffee and cake. Compose myself and empty my mind of the noise of the past few hours before I resume the role of capable, competent, clear-communicating professional.

Because sometimes, it hits me.

am capable.

am competent.

can communicate.

And I can do many other things besides. I am resilient and strong. I have powers. I have skills, expertise and intelligence. People often tell me so, and I recognise it more and more in myself. These days, for the most part, I am positive. Optimistic.

But sometimes, nevertheless, it hits me.

What comes naturally to others does not always come naturally to me.

There are times when I recognize that this fundamental part of who I am does make things difficult. I may be “verbal;” I may appear, on the surface, to “function.” But every day of my life, I contend with challenges because the world is not designed for people like me.

And mostly, that’s fine. That’s just the way it is. I like who I am.

But sometimes, it hits me.

A version of this post originally appeared on Anna’s personal blog, The Misadventures of Mama Pineapple.

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