Why Written Instructions Are Best for Me as Someone on the Autism Spectrum

TOPICS
JOIN THE CONVERSATION

5 Life Lessons From My 5-Year-Old Son on the Autism Spectrum

339
339

This past May, my son Wyatt turned 5. In his five years, he has taught my husband and me so very much. Wyatt is a boy who has autism spectrum disorder; it does not define him, but I believe it’s definitely part of what makes him so special. Being his mother is such an incredible gift, and it’s something I’m grateful for every day.

Have you ever met someone so special you felt honored to be in their presence? This is who Wyatt is to me. In his short five years, he’s worked so hard, accomplished so much, and he has helped me become a better person. I wanted to share five things he’s taught me. Believe me, there are so many more things — but I’ll save the rest for a later time.

1. Always love.

I believe love will always pull us through the hard times. Wyatt is the most affectionate, sweet, loving child I know. If you’re sad, he’s there to hug you. When his brother falls to the ground, he’s always the first one to help him up. He even hugs the principal at his school when he sees her. And after the appointment when his doctor confirmed our suspicions about his differences were right and I felt like melting to the floor, he was there. At 18 months old, he was there for me. His love is the reason I know I will always fight to get him everything he needs, and then some.

2. Always be prepared.

Family outings, even simple trips to the grocery store, have to be prepped for. There is no grabbing my purse and running out the door. Social situations can sometimes be overwhelming for Wyatt, which is why we have “back-up” items. Fidget toys, his chewie, a charged iPad, milk — the works, because we never know what we’ll need. Every time before we leave the house, we think of everything we could possibly need should a situation arise.

3. Always be flexible.

When things don’t work out, just breathe and try to come up with another solution. There have been many days that haven’t gone as planned, and it can be easy to get caught up in the storm and let it ruin your entire day. Don’t. Be flexible. If your little one has a sensory meltdown in the middle of the grocery store and you can literally feel the eyes on your back — brush it off. You are doing the best you can; you cannot prevent meltdowns, but you can calmly leave the store and change things up. Letting go of the idea of perfection has been something I’ve struggled with for a long time, and being flexible to change direction (a skill Wyatt has taught me) has been wonderful.

4. Always celebrate the small things.

I’ve found the small things always end up leading us to the big things. And every accomplishment deserves to be celebrated. For example, Wyatt started outside-of-school speech therapy a few weeks ago. We walked in on the first day and had to wait 15 minutes. Wyatt does not do well with waiting, so he started to run around the lobby. I was chasing after him, trying to guide him in the right direction, and to be honest, it’s kind of comical looking back. Then, when we finally got into the appointment, he had a full-blown meltdown because he wanted to keep running around. So after our first unsuccessful visit, I consulted with friends and his teacher at school, and we came up with a plan for the next visit. We’d use a “first/then” card. The “first” thing was speech, and the “then” thing was his iPad. His teacher went over it with him, and when I picked him up from school to take him to speech, he already knew after his speech appointment, he’d be able to have something he really enjoys. And guess what, that next visit went great!

5. Always push forward.

Many moments may be hard. But guess what? You got this. And this journey is worth every moment. You might not realize it now, but you’re working hard to help your child bloom and thrive. When your child is crying, when you’re crying, when you’re having a tough day, when you think you’re the worst parent on the planet — know you will get through this. And choose to get through it, together.

What is one thing your child has taught you?

Image via Contributor.

A version of this post originally appeared on Kendall’s website.

We want to hear your story. Become a Mighty contributor here.

339
339
TOPICS
, , Contributor list
JOIN THE CONVERSATION

Viewing Autism Through a Different Lens

325
325

I knew my youngest son, Alex, had some differences. He was 2, and something seemed off about his emerging language skills. He was vocalizing, but it was mostly prompted repeating, and he didn’t seem to be able to communicate effectively — he wouldn’t even gesture for simple wants and needs. He also didn’t appear to want much to do with the people around him, and what I thought were tantrums were often explosive. I knew there was something more going on. And yet I couldn’t face the word that kept flitting through my mind: autism. Because what I knew of autism at the time was scary to me. I knew he needed help, yet I was afraid what that would mean. I felt helpless and hopeless. I didn’t feel ready to face these challenges.

We finally faced facts and found an amazing therapy center to help him. At almost 4 years old, Alex began attending an early intervention therapy center eight hours a day, five days a week, year round. The first day I dropped him off, I got into my car and I felt a tremendous wave of relief. Alex immediately began making progress on simple but monumental things, like brushing his teeth, using his imagination when he played with his toys, calling me “Mom.”

I spent a lot of time waiting in the lobby at drop off and pick up. I started to notice the other children in the center were making significant progress, too. I wanted the world to know about these children and how remarkable they are.

As a photographer, my favorite subjects are children. I love their innocence, raw emotions and delightful spirits. I felt compelled to photograph these children in particular and tell their stories. Compelled! I couldn’t stop thinking about it. I wanted people to see autism through a different lens.

So two years ago, I set out to photograph 30 different children with autism spectrum disorder. I was determined to show a different side of autism. Not all the doom and gloom, therapies and theories, facts and figures that one often gets when looking for information about autism. Don’t get me wrong, autism can come with challenges, not only for the individual with autism, but for their families as well. We need therapies, techniques, theories, facts and data in order to help support individuals with autism.

I feel we’ve done a great job in recent history to raise awareness of autism. And we are moving toward autism acceptance, which is a step in the right direction. However, acceptance implies tolerance. And who wants to simply be tolerated? No. I want to take it to the next level. I want to change the conversation we have about autism. I want to move towards “autism admiration.”

What would happen if we value autism as a strength? What would happen if we allowed those with autism the space to develop at their own pace, for their ideas to be considered, for their strengths to flourish, and for their life challenges to be supported? What gifts will they bestow on the world? What if our education systems were elevated to make creative, active, experiential learning the norm? Couldn’t this shift benefit all students and be far more inclusive of those with autism?

I have the unique vantage point of being a parent to a child with autism and also an observer of those on the spectrum through the lens of my camera. As a photographer, I am invited into people’s lives, quickly developing a rapport to allow them to be their authentic selves in order to create a compelling portrait. I have the privilege of interacting with and getting to know families intimately, if even for a brief amount of time. It’s given me a unique perspective. And what I see is:

Joy
Patience
Persistence
Beauty
Delight
Connection
Love

As a photographer, my life’s purpose is to reveal beauty. Let me show you the inner beauty I see in these children. Let me show you their magic.

boy sitting in the woods and smiling

girl lying on bed and reading through a book

 

young boy holding stuffed turtle

young boy sitting in sanbox

 

A Kickstarter campaign is now underway through December 23, 2016, to help get the “Faces of Autism” book published. The targeted release date is April 2, 2017, which is World Autism Awareness Day.

Images via Contributor.

Follow this journey on the Faces of Autism Facebook page.

We want to hear your story. Become a Mighty contributor here.

325
325
TOPICS
, , Photo story
JOIN THE CONVERSATION

Learning How to Best Support My Son on the Autism Spectrum During the Holidays

179
179

This time of year can be chaotic. That time between Thanksgiving and Christmas? In our family, we find ourselves running around trying to recover from one holiday and gear up for the next.

My son T.J. is 16 and has autism spectrum disorder. Over the years, some of our holidays have been seamless, and others challenging. We have had to find what works for our family and tweak it year after year as different locations, people and changes in T.J. himself affect him.

This year, both T.J. and his brother Peter, 15, had the entire Thanksgiving week off from school. Thank you, school district, for those extra few days!

The Tuesday before Thanksgiving, we drove from our home in Vermont to my sister’s home in Boston. My sister and her husband have four kids, and the cousins all really love each other. But get those kids together, and the noise level definitely goes up a notch or 12.

T.J. has learned over time to find a quiet spot for himself in my sister’s house and retreat there when he needs a break. Everyone is very accepting of whatever T.J. needs to do to be OK with the increase in activity and noise. No problem.

Thanksgiving day comes along, and we all pile into cars to caravan to our cousin’s house in Connecticut. Our Thanksgiving crew has grown as our families have grown, and we are quite the loving, rowdy, laughing, fun-filled bunch! It’s really a wonderful group of family, filled with love and understanding for our T.J., who finds his own coping mechanisms each year. This year, he spent a lot of time with his iPad and headphones, with breaks in between, and not only was Thanksgiving day a huge success for our noise-sensitive guy, he even stood up and made the most beautiful toast at the beginning of the feast. It brought me to tears, as he expressed his love for his family.

The day after Thanksgiving was another wonderful one back in Boston, seeing the wonderful family who could not make it to the feast in Connecticut. It was a little more low-key than Thanksgiving day, but still filled with activity. T.J. did a great job, and we all had a wonderful time.

On Saturday, as we drove home to Vermont, I reflected on T.J. and his behavior over the past few days. I beamed as I thought of how far he has come — he no longer has meltdowns during the holiday as he has figured out what works best for him, and we have all supported his coping skills during the chaos of travel and people.

I felt so proud.

My husband Sean reminded me as we drove that we needed to stop at the outlets to try to find some new jeans for our constantly growing boys. We knew it would be hectic, as the outlets would be filled with holiday shoppers, but we also knew desperate times call for desperate measures. So we stopped.

Long story short, we knew the crowds might be too much for T.J., so we decided to try on jeans for sizing purposes only and order them online after we got home.

What I didn’t know, and what Peter told me later, is that T.J. was muttering curse words under his breath the entire time we were there. He was really stressed out and holding it together by a thread.

When we finally got home, T.J. exhibited some strong words and signs of anger. The only one who could get through to him and help calm him down was his brother Peter.

After T.J. and Peter were both settled in back at home, I wondered how I could have missed it. Here I was, walking around without realizing that brewing beneath the surface of my sweet T.J. was a stressed out boy struggling with some of the challenges brought about by his autism.

How had I forgotten the years past when my focus was so keenly placed on how T.J. was doing? How had I forgotten his ability to cope with noise, activity and stress is finite?

Throughout the years, we have learned what T.J. needs in order to be comfortable in even the most busy environments. A quiet space for a quick retreat, if possible. Earplugs — I always have a stash in my purse. Deep breaths. Shoulder squeezes — tight ones. Back scratches. And worst-case scenario, leaving the area to collect ourselves. I have learned I need to check in with him frequently, especially in very active and busy situations. But now that he is older, we are teaching him to take the lead in his own self-care. Letting us know when he is feeling tense. Asking for the squeezes or scratches that he needs. Asking to leave the area if need be. Advocating for his own well-being.

This is the latest and, I believe, one of the most important things for T.J. to learn. Advocating for his own well-being. We reiterate that taking care of yourself is a critical part of growing up. Asking for what you need to be OK does not make you a “bad kid” or a rule-breaker. It makes you human. This will take time for all of us to get used to. There is no overnight “fix” for these challenging situations. But with attention to the matter, room for error, and love behind all of it, we know he will learn just what he needs to do for himself to be OK.

And I couldn’t be more proud of him.

Live and learn. Every day.

I hope you all enjoy your holidays with your families just as much as I look forward to enjoying my holidays with mine. With patience, love, respect, room for error and flexibility!

And cookies. Lots of cookies.

mother hugging her son from behind

Lead image via Thinkstock.

We want to hear your story. Become a Mighty contributor here.

179
179
TOPICS
,
JOIN THE CONVERSATION

What I've Learned About Autism Since My Diagnosis

JOIN THE CONVERSATION
black and white picture of a boy watching tv

The Lesson I Learned When Our Family Opted Out of Holiday Parties

253
253

Holidays used to be a challenge for our special needs family. My wife and I have two boys, Peter and Daniel, aged 17 and 15. Dan is autistic and nonverbal. Years ago, my wife and I made the decision to no longer go from home to home trying to see everyone for the holidays. What is often meant to be a fun and relaxing tradition with relatives was stressful for our son and a challenge to plan. For the weeks leading up to the holidays, we would have discussions, checklists, plans, backup plans and worry all the way to the party.

So instead, we opted out. We decided we were going to stay at home and have Dan in his most comfortable environment instead of going to another’s home. This decision would help alleviate many of the challenges we faced as a family. As for our other family members, we decided if we were not going to go to their home, we would instead have a “Holiday Open House” and invite everyone to come to our home. We called them and said something like, “If you can make it, great. If not, no biggie. No pressure.” When we did this, something amazing happened. Everyone came to us. As I look back on the last 10-plus years of my life, I found I have consistently underestimated the amount of support available to us.

This year will be our 10th year of hosting the holidays. I am so grateful for our loving and understanding family. They support us, love Dan immeasurably and don’t judge our methods. What was a family decision to help our son years ago is now our family tradition. At our party, Dan often hangs in his room, comes down periodically to see who is here and check on the festivities. And as the years have gone on, he has gotten more into it, coming down more frequently and hanging out with the guests. The difference today is that when he has had enough, he goes to his room for some quiet or to be more in control. During the party, family filter in and out of his room to see him, play with him, or just to get some one-on-one Dan time.

Some of the great things my wife does to make this a fun day include a (heated) trivia contest, a “guessing jar” of candy where the attendees guess the number of pieces, and the wildest “White Elephant” exchange in history. All contests have small fun gifts, and I am always as surprised as others to see what they are. As for me, I make it my goal to provide a huge holiday meal and channel my inner chef.

In looking back, this decision has helped us be more aware of the opportunities and support we have. At times, it can be easy to get overwhelmed and think we alone must solve every challenge in our child’s life. This experience and many others have taught me that when we let go of how things “should be” and realize we don’t have to do it alone, the possibility of something better always presents itself. Funny enough, what was once a stressful decision for my wife and I has ended up being one of the greatest Christmas gifts I ever received: a change in perspective.

My hope for the readers of this article is if you have a child with special needs in your family, that this year you receive the same gift I did.

Image via Contributor.

We want to hear your story. Become a Mighty contributor here.

253
253

RELATED VIDEOS

JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.