little girl playing on play structure at the park

A week ago, I was getting ready for a follow-up visit with the developmental pediatrician, and to be honest, before last April I wasn’t all too sure what a developmental pediatrician did or was, but I was certain my family of seven didn’t need one. That was until I was ready to get real and acknowledge my youngest daughter was on the autism spectrum.

Seraphina was born on a blazing hot September evening. She flew into the world, letting us know life would never be the same. With four children at home and no clue as to what to expect, I was utterly shocked the next day as I slid her sweet newborn body into a pink outfit that let us know, “I’m the little sister.”

Our sweet Seraphina, who takes her name from the strongest of angels, would begin to show us the strength we needed to lead her in life — and the strength she had to show us the life that lay ahead of her. As an infant, Seraphina was perfect. Truly. There were a few cries, but when there was reason. She seemed to be developing typically, until one day I realized she had some quirks that raised a few flags and made me begin to wonder.

Fast-forward six months and many trying doctors’ appointments, and Seraphina was diagnosed with autism. We drove home, and as tears rolled down my cheeks I never imagined the things I would learn to be gifts after hearing the words “autism diagnosis.”

I have recognized three major gifts since learning of her diagnosis:

1. First, the world has slowed and allowed me to become more compassionate and understanding of others. What once seemed so important now seems so frivolous. I am a Type A mom who had to have the house in complete order, my kids had to do their best, and when in public we had to have a good showing. Now, when I see a parent struggling to manage a child during a meltdown, I understand. When my child comes up to cuddle me, I stop and take the time. For so many years, I spent my life trying to be seen as perfect when in reality I never was. Now, I realize my life is perfect. It’s just a different perfect than I imagined.

2. Second, I feel the significance of milestones so much more. I remember being so impressed with my 7-month-old when she learned to walk. To be honest, my kids didn’t have many issues with milestones, and I never understood other parents when they lamented over milestones not met — until I had Seraphina. Seraphina walked on time. She talked on time, but her autistic traits became more apparent nearing 18 months. So when we got eye contact, I beamed. And the first time I heard “I love you,” I cried. I came to appreciate the little milestones that used to seem like no big deal so much more.

3. Third, I have gained a new family. I remember my first trip to an autism support group. I hated it. On the drive home, I begged a friend to return my special needs parent membership card, but this card was now mine. Not for a month or a year, but for a lifetime. I no longer feel sorry for myself, but rather I’m grateful to surround myself with individuals walking a journey similar to my own. Yesterday, I reached out to a mom with an autistic child. I invited her for tea. This was totally out of my comfort zone, but having her here, I felt good. It felt safe to talk, and I knew she understood.

There are so many things we face in life that may cause us to feel sorry. This diagnosis is not one of them. I had to mourn the childhood I expected for my daughter, but releasing that only allowed me to open myself up to the gifts that come along with the diagnosis, too.

A version of this post originally appeared on Messy Blessy Momma.

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1. Noise-canceling headphones: for when I need to take a break from my surroundings. Sometimes I need to check out to avoid sensory overload or block out distractions so I can work and focus on other things.

2. Sunglasses: for light sensitivities. I try to stay in the shade when outdoors, but I need sunglasses even on rainy days (and sometimes indoors). I have special colored lenses to help with the florescent lights in stores and office.

3. Hats: Hats with brims are great to block out glaring lights. I also like hats that come down around my face on days I do not feel like looking at people or being looked at. On sensory days or when I am tired, I honestly don’t have the energy to socialize with strangers, so I don’t.

4. Something to fiddle with: if I need a break or distraction, I use a book, iPod, smart phone, or fidget toy such as a rubix cube. I always like have an audio book or music available (and headphones) when I need a break.

5. Hand wipes: If you have tactile sensitivities like I do, sticky hands will annoy you. It is nice to have something to clean up with. I recommend avoiding scented wipes or finding a smell you like.

6. A snack: I get fuzzy and agitated when I am hungry. I can’t think, and my sensory issues get worse. If you have a sensitive stomach or are sensitive to tastes and textures, it is good to have something with you that you can eat if you are venturing out for the day.

7. Something that smells good: My sense of smell is sensitive. Public bathrooms, household cleaners, chemicals, and air fresheners all make me queasy. I like to have good scented lotion or perfume (that smells like food or candy) in my bag to apply when I need to smell something pleasant and block out something obnoxious.

8. Gum/mints/candy: My stims are less obvious, possibly because I’ve turned to an oral fixation. I like to keep organic mints, candy, or gum in my bag. Personally, I cannot handle aspartame or artificial sweeteners as they aggravate my stomach. I tend to be more sensitive to any non-organic chemicals than most people.

9. Taking breaks: I’ve found it is better for me to step away for a quiet moment alone than to have a public meltdown or shutdown. Don’t be afraid to excuse yourself and step away to take a break if you need one.

10. Knowing my limits: I get a certain feeling that seems to increase as I get closer to a shutdown or meltdown. It normally starts with the lights getting brighter and sounds getting distorted. Next is a headache and general mind fuzziness. Pay attention to how you are feeling. Learn to recognize the signs that you are getting overwhelmed.

Remember everyone is different. Autism really is a spectrum. These are just some of the tools I use.

Follow this journey on Anonymously Autistic.

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I’ve written an entire series about the IEP experience…

From a parent perspective.

From a special education teacher perspective.

From a teacher perspective.

From a student perspective.

I knew it was coming.

This IEP was different. I asked Tucker if he wanted to come. At first he said no, and I was relieved. I know this might seem old school, but I like to have my own teacher time. Yes, my children should be responsible for their own learning and be able to communicate their learning and so on, I get it. Regardless, I like the one-on-one time with their teachers. I like to ask them honest questions and receive honest answers.

This time, he decided he wanted to know what it was all about.

He called my bluff. Damn.

It started with me being early and trying to hold it together. Then a small room. Then fidgeting. Then Tucker arrived, and I breathed a sigh of relief. He takes up pretty much the entire doorway, and his twinkling eyes, soft complexion and sweet smile reassured me it would all be OK. (Who’s the “real” adult in this situation?!)

We talked about the meeting. I told him how the meeting would be run. I told him he could leave if he became bored — but to do it politely and quietly. Then we practiced what “politely and quietly” looked like.

I always wanted to be an actress; he gives me that chance over and over and over again. Rehearsals for life.

Then the teachers arrived one by one. They all smiled. They all said “hello” to Tucker, and he nodded back.

They went around the table and all said wonderful things… Then the special education rep spoke the words I knew were coming: “He’s met all of his goals. He must graduate from his IEP.”

Tucker politely excused himself.

The teachers left.

Celebrate.

Panic.

Celebrate.

Panic.

Celebrate.

Panic.

Breathe.

Here I was in a room with his special education teacher, and I was speechless. I just stared at her and out the window and at the table and back at her. I took a deep breath and she finally said, “Nikki, he’ll be just fine, and if he’s not… you’ll know, and you’ll know just what to do.”

Then I sobbed. In that small room in Tucker’s middle school, I sobbed.

She came to the other side of the table and hugged me and said, “You know, I don’t get this moment very often. This is what is supposed to happen. I feel so lucky that I get to share it with you.”

Snot is now all over my sleeve, and mascara is running down my face.

I was able to mutter a “thank you.” Then she said, “You know, it’s your victory, too. You never let the frustration show. You advocated in the smartest of ways. You helped us understand so much about him. We are better because of you.”

That was not helpful to the existing snot situation.

I hugged her again and said, “We are all better because of him.” She agreed and ushered me out the door.

On the way out to my vehicle, I stopped and looked towards the heavens. Religious or not, this was a moment for praise and thanksgiving. As I climbed in my vehicle and drove away, I couldn’t help but think about all of these meetings. All of these meetings where I left in tears because I wanted life to be easier for him. They were over. In hindsight, they didn’t seem so bad. Funny how time really does heal.

I called my husband and had to pull over to tell him the news because I couldn’t talk. Half-way through my 25-minute drive to work, I had to stop again. It hit me.

How did he do this?

How did he keep up with the academics of his peers and have 27 (yes, 27) different goals in his first nine years of school? How did he do that?! It hadn’t occurred to me until that moment that he was not only working on speech and coordination and managing emotions — he was doing everything the other students were doing as well — math, science, literacy.

How did he spend time with speech language pathologists, occupational therapists, counselors, and physical therapists and still keep up?

Seriously, how did he do that?

When life settled down, that night I stood in front of my refrigerator staring at a picture of my brother. A picture that was taken after a horrible accident. A picture of him after he had overcome tremendous odds. A picture that was taken after my parents were told his chances of living were marginal.

I keep that 30-plus-year-old picture there as a reminder of the strength of the human spirit. I love that picture. As I turned around, there was Tucker, sitting at the table like every other night. But tonight, I was overcome with emotion.

There he is, sitting at my kitchen table — a very present reminder of the strength of the human spirit.

The tears were certainly present, but in the end a smile crept in. A smile that is evidence of a triumph. A smile of success. A smile that is reminiscent of the strength of the human spirit.

A smile because of Tucker.

Image via Thinkstock.

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When it comes to celebrities in the autism community today, no name is bigger then Dr. Temple Grandin. A few years ago, while giving the opening keynote presentation at an autism conference in Memphis, I had the amazing opportunity to meet her. As someone who grew up as a kid on the autism spectrum idolizing Dr. Grandin, it was nothing short of a dream come true. While I thought meeting her would be enough, I soon after found out that I would also be having dinner with her every single night of the conference. It truly changed my life. Her perspective and her knowledge of the autism community were remarkable.

I wanted to write this blog in the hopes if you ever have the opportunity to meet Dr. Grandin, whether it is at a book signing, autism conference, etc., you will do just that. I could write a book on why meeting her changed my life (maybe I will someday), but for the time being, here are five reasons she’s changed mine…

5. Her belief in equal rights

While listening to Dr. Grandin’s keynote address at the conference, it was refreshing to hear her perspective on challenging our loved ones with autism. As much as our kids need services and supports, they also need discipline and routines. She believes at the end of the day, you need to treat those with autism as human beings.

4. Her passion

One idea that stuck out to me that Dr. Grandin said several times while I was with her was the fact that she thinks half of the programmers in Silicon Valley are on the autism spectrum. Dr. Grandin believes many individuals on the spectrum have great abilities. Every time she mentions this she does it with the knowledge that her own abilities have taken her very far. So she knows from experience that it’s possible for others.

3. Her humility

While many people with the amount of success Dr. Grandin has had could have a bit of an ego, she is very humbled. Her humility, along with the respect she gives to the people around her, is astounding. When she speaks, she rarely mentions her own work and always provides resources to help benefit the community.

temple grandin and kerry magro

2. The “stretching” method

One of the key phrases Dr. Grandin has become famous for is the need for us to “stretch” ourselves and our loved ones with autism. Like an elastic band, she says, you can’t stretch it too far or it will snap. You need to be mindful and stretch your loved ones or yourself to their or your own capabilities. It’s a constant reminder that progress, no matter how big or small, should be an ultimate goal.

1. Finally… the hope she gives our community

In my opinion, the biggest attribute Dr. Grandin brings to our community is her overall success in her field. Many of the attendees at this conference were parents of young kids on the autism spectrum. Hearing her stories of success and what she’s done with her life has given every family something to strive for. She truly exemplifies that there are wonderful possibilities out there.

Dr. Grandin gives me hope that I can also make a difference in the autism community as she has done. Even though I’ve only been speaking
professionally for six years while she’s done it for decades, I hope one day I can make the same lasting impact on our community that she has. For that and for all that she has done for our community, I will be forever grateful to her.

A version of this post originally appeared at KerryMagro.com.

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Living with autism has been a positive journey for me. I feel as though my autism is a gift that I can share with the world.

However, not everyone understands it, and they can turn to the last resort that nobody should go through: bullying.

Being bullied for being autistic can really do damage. I know when I went through it, I would just cry and cry, and I would feel severe pain throughout my body.

As I’ve gotten older, though, I realized I’m not the problem. It’s those who feel the need to bully me for something that’s a part of me.

But then I also got to thinking how sad those people must feel if they have to be so mean to me and others with autism. So guess what I did to those who bullied me? I forgave. I noticed when I decided to forgive those who were cruel to me, I felt free. It was like a weight was lifted off my shoulders.

Even though what they did to me was awful and, at times, damaged my confidence, I forgave them because I needed to be free. One of my challenges with being autistic is I get really upset when I feel threatened, and it takes time for me to bounce back from it.

But as I found forgiveness in my autism journey, it has made me a stronger person. To those who may be getting bullied because of your autism, my advice is to forgive and never blame yourself. You’re not the problem. It’s the person who is bullying you who is the problem. They’re going through something and are taking it out on you.

Never be ashamed for being autistic. It’s a puzzle piece of your life, and it can teach the world how amazing you are.

And forgive the bullies because it will set you free.

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Sweet boy, you’re different.

Not to Mummy. Not to Daddy. Not to your little sister. You are our whole world and everything in it. Each eccentricity, each little quirk and trait — they are the rich and joyful substance of our lives. We know no “normal” but the world we inhabit with you. And, to us, it is perfect; we would want no other.

We are all different.

Not a single being on this earth is exactly the same as another. There will always be things that we struggle to understand about one another. That is a reality of what it means to be human.

But your differences begin to stand out more and more, every day; the cloak of youth is beginning to lift, and your peers are starting to be aware of behavior that is strange to them.

In the store, a slightly older boy and his brother are wind-milling and skipping around their mother. They wander over to you, and he speaks. “Hello! I am Sam, and that boy over there is my brother!”

You stim, squeeze your hands close up to your eyes and contort your face as if you are in agony. You are so excited he has spoken to you. You gesture towards yourself, your whole hand forming a point.

“This boy… this boy is H’s brother!” You have trouble getting your words out. I recognize all the quirks of your conversation. You have mimicked what he has said, the information he has provided, but you do not understand the purpose of the conversation. Your mind follows a slightly different script.

The boy frowns. He doesn’t understand why you have said what you said. He doesn’t understand why you pulled such a strange face. He turns away. “Bye!” he yells again as he runs off. You stim again, still so excited. You do not understand the rules that were broken, the judgments that were made.

You are still just delighted that he spoke to you. But one day you will know. And my heart could almost break, sweet boy.

My heart could break to see your desire to join in be thwarted by the quirks that make me love you all the more. The conventions of conversation come so easily to others; it is almost impossible for them to imagine a world where those unconscious rules are so alien.

The children at nursery are afraid of your stimming. They think you are angry with them, or aggressive — when the opposite is true. You are delighted by them, by everything they do, by every word they speak to you, by everything you observe and learn from them.

I wish I could show them. I wish I could explain that you are so sensitive, so kind, so desperate to be their friends, that if they could just accept you, accept what is “strange” to them, their lives would be so enriched by having you, being with you — but they are only 3 and 4. There is no way to force that understanding. Only time, and patience, and failing — perhaps failing many times — will eventually lead you to those who will see what I do.

This is just the beginning.

Truthfully, what hope do we have of sparing you from these judgments? There is not enough opportunity, enough time in the whole world to educate all of those who would question your exquisite oddities.

Will autism ever be wholly accepted? Will there ever be enough awareness?

I hope by writing, by fighting, by helping you carve out a well of understanding, as you grow, there might be less fear, less judgment. And, precious child — who will know what it is to be different more than most — I can help you learn to accept others in all their glorious uniqueness.

The world will be a better place for your presence in it.

Follow this journey on Someone’s Mum.

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