Jackie Marquette's son, Trent

10 Things I've Learned as My Son With Autism Transitioned to Adulthood

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My immediate survival mode kicks in when my 39-year-old son, Trent, stands in front of me looking deep into my eyes, saying, “Big hug,” then asks me what his day will look like. This was his life eight months ago, which was much different than the last 15 years.

Transition doesn’t only happen when high school ends — it can happen anytime in life. Nobody talks about middle-aged or older adults who rely on supports for transition throughout life. It is time to add this to the dialogue when we talk about autism: adulthood, interdependent living and well-being beyond the school years.

Trent was diagnosed with autism in 1980 at 3 years old. He is verbal but has communication and social anxiety challenges. Yet, when he has people around him who understand his needs and see his strengths, he has a general ease and contentment about his life.

His high school years went well. He sang in the choir, which he loved, and he was selected for a new innovative employment program, which offered him two paying jobs. It was awesome. I felt so fortunate for these community employment services while he was still in school. 

After high school ended, the “falling off the cliff” people talk about was real. But it eventually had a positive impact on me. After we landed, we brushed off the dust and I counted the blessings we had. I also got curious about “what was next.” It got me moving. We listened, followed his lead and supported Trent by helping to create opportunities for him.

Of the 21 years of Trent’s adult life, 11 years he had a part-time job at Meijer, a retail and merchandise store. Trent enjoyed his job in the pets department and lawn and garden. He was a team member, worked with co-workers and was appreciated by his employer and the regular shoppers got to know him. One day when I was shopping at Meijer, I overheard the store manager bragging about Trent to his corporate manager, “Yes, Trent is a legacy here, what would we do without him?” His comment took my breath away.

For the past 16 years, Trent rented his house from a family member and has only had two different live-in supports. He used a state grant that paid for live-in support, and he has had and still has a voucher to pay for reduced rent through Section 8 housing.

Fast forward to eight months ago — things changed quickly.

Trent’s live-in support left, so Trent moved back home with his stepdad and me. Similar emotions to what I felt after high school ended came back. I questioned myself — can I rebuild a life of support for him again? I knew it would never look just as it had previously. Now for more change, more transition and new people to find to travel on a new road.

Then along came Hannah, who became Trent’s new daily support and friend. We found her by running into her mother, a friend we knew through the artist community. Hannah is 23 years old, upbeat, fun and a recent college graduate. She and Trent fill their days running around town, painting in his art studio, exercising at the gym, participating in shopping for his personal items and groceries, eating out in restaurants or just hanging out at his home watching TV. Trent started to get his old life back with Hannah, who opened up his world.

Then two months later, my brother stepped forward to be Trent’s live-in support. He and Trent have had a unique relationship for years, and most importantly, Trent feels safe and content with my brother. 

I believe nothing just happens. I want to share with you the 10 lessons this transition and life have taught me. You might consider these, too: 

1. Embrace the uncertain future. I have to be honest, I struggled emotionally with this, but I kept moving, taking small steps regardless of fear and uncertainty.

2. Notice all strengths. You never know what door will open as an opportunity for the individual.

3. Find any way you can to guide the individual to develop their best strengths and interests.

4. Find support people who care and understand the adult. It’s important they follow through to meet needs, challenges, interests and, most importantly, safety. 

5. Create opportunities where the individual can experience everyday community settings for purpose, enjoyment and developing strengths.

6. Create work and career opportunities that offer the individual meaning, structure and interests that align with their personal preferences and strengths.

7. Remain curious about how to help guide the individual to improved life situations. I believe it’s my curiosity that has led me to become open to see potential realities for Trent. 

8. When you are up against a brick wall, try one more thing, just one. I recall those days or months when I couldn’t see my way. I tried just more more thing, one more action or reached out to one more connection. 

9. Don’t let people tell you there isn’t growth after a certain age, because there can be. But let me qualify this — it’s important to have community interactions and positive experiences that deliver safety and predictability to the individual.

10. Advocate for more improved individualized employment and community services/resources for this group.

With these actions and provisions, Trent has been able to:

Create oversized abstract paintings with brilliant color, using his strength in visual spatial ability, which brings him joy

Connect and interact with the art community. It has taken years, but he is exhibiting his art in fine art shows and galleries nationally, including the prestigious Agora Gallery in New York City and the Sweet Art Gallery in Naples, Florida. (Watch a video of Trent painting.)

Follow a daily routine that enhances his connections, communication and flexibility.

Enjoy comfort and delight living in his own home. He is known as a neighbor and a community member.

Know what he can look forward to. He has daily activities he enjoys and things that are important to him, such as his golden retriever, Katie.

Feel and express love and be emotionally and deeply connected to close family members.

Feel physically well. He exercises and takes holistic supplements.

I realize he is vulnerable to this world. I am also vulnerable to the day I will no longer be able to oversee his support needs. I don’t really know what to do about this but to only do my part now in advocating.

My son and other adults with autism who need added support may rely on us to live physically and psychologically safe, connect with others and have daily activities they enjoy. I no longer strive for my son’s “independence.” Rather, we strive for “interdependence,” which means, “we are mutually dependent upon each other, and we each can offer value by contributing our best to the entire group.”

In my view, this is the only way acceptance will evolve in our world. For now, I will do my best to oversee the supports that help him.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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What We Do to Help Our Son on the Autism Spectrum Sleep at Night

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Sleep has always been difficult for my son, Bam Bam. Before his autism diagnosis, I remember going to the pediatrician’s office on what seemed like a monthly basis trying to seek answers in regards to why my baby wouldn’t sleep at night.

My oldest son, May May, has always been a sleeper and still is. He loves sleep, and it’s not uncommon for him to sleep 12 hours per night. My pediatrician assured me all kids are different, and that some babies are more difficult than others. Bam Bam didn’t have an autism diagnosis at the time, but sleep was my first clue that something wasn’t quite right.

I tried everything. I tried breast milk, gas drops, reflux meds, specialized formula, specialized bottles — the list could go on and on. The truth of the matter is that sleep was an issue for my child when he was a baby, and it’s still an issue for my kiddo as a kindergartner.

As a baby, the only thing that really worked for Bam Bam was the sensory input he received from the bottle. I remember all of the advice people shelled out at me. I heard comments such as, “Let your baby cry it out,” “Your baby shouldn’t be so bottle dependent” and “You shouldn’t willingly give into your baby’s screams.” This is what I really wanted to tell people who criticized me at the time: “I’m so tired from being up almost all night long. So yeah, I’m avoiding a meltdown by giving my kiddo a bottle.”

Bam Bam’s sleeping habits got better as the years progressed. He has gone from being up all hours of the night to now sleeping pretty consistently throughout the night. The challenges we experience now are way different than what we experienced in the early years. We always start the evening by laying Bam Bam down in his bed. Music is extremely calming for him, so he almost always falls asleep to music playing.

The biggest challenge now is getting my kiddo to stay in his own bed throughout the night. He’s an extremely light sleeper, so the tiniest sound will wake him up. His reactions vary from high-pitched screams, running down the hall or sometimes he tries to jump into bed with Mommy and Daddy. My husband and I typically try to bring him back to his bed and try to get him into a calm enough state so he falls back to sleep.

If he’s extremely worked up or if this has happened multiple times throughout the night, we often just let him stay in our room. When we get to this point, he’s exhausted and we’re exhausted. He has school and we both have work. We really just do whatever we can to get him to go back to sleep. We don’t want his day at school to be impacted due to a lack of sleep.

With all of this being said, I do think that Bam Bam is ready for additional methods to encourage him to stay in his bed for the entire night. He does do this occasionally, but not consistently like my 8-year-old and my 2-year-old. We’ve decided to really begin to push the sleep training this summer.

I don’t think he’ll ever be a 12-hour per night sleeper like my other children, but here’s hoping he will continue to make progress. He has already come along way, and I’m hoping he will continue to improve in this area as the years progress.

Follow this journey on Diary of an Autism Mom.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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To the 'Cool Guy' on the Plane Who Realized My Son Has Autism

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We arrive at Burlington Airport.

At this point in my son’s life, “The Cat in the Hat” is everything to him. He has the book, the movie, the t-shirt. He runs to the gift store and demands I purchase him a Cat in the Hat Pop Up book for $47.95. I comply because I believe this may be the one thing that will get us through the TSA Security Check, onto the plane, and to Chicago without a meltdown, and I know the purchase is in vain.

We get onto the plane, and I feel like every head turns to us at that moment, looking at us with a feigned politeness. I know what they are thinking, “Oh great, it’s a family, please, don’t sit in the aisle next to me.” In my head I can even hear the stewardess saying, “You can feel free to store your… child, in the overhead compartment, or the space beneath the seat in front of you.”

We get to our seats, and we are two rows behind the engine. If we hit turbulence, it will be a bad experience. However, we are a family, and we are flying on a budget. My son sits by the window, my wife, in the center and I take the seat in the aisle. I see this “cool guy” get onto the plane, a man about my age. He is wearing a concert t-shirt, ripped up jeans, he’s listening to punk rock from the 1970s on his iPhone. This guy represents who I was as a traveler before I had a child. He takes the aisle seat directly across from me. I want to say to him, “Look, Cool Guy, you might think you are going to relax and enjoy this flight, but you are part of my family for the next 1400 miles, so strap in, it’s going to get bumpy!”

We take off. Planes are not designed with children in mind. There is no ball pit, no playground and an iPad can be entertaining for just so long. To keep my child occupied, my wife and I take turns walking him from the pilot’s cabin to the tail. We hit turbulence over Buffalo and need to take our seats. The plane is shaking; my son’s ears begin hurting from the drop in cabin pressure, and he has a meltdown. This is a child who has difficulty with crowded social situations and excessive stimulation. My wife and I can do nothing but hold him and live through this moment. I look over at Cool Guy, and he is staring at me, trying to pour a rum and Coke. I want to say, “Look, Cool Guy, I am sorry if we are ruining your time on the bar in United Flight 106, but we have a crisis here, and if anyone on this plane needs to drink, it’s me!”

My son falls asleep out of exhaustion. And that wave of exhaustion flows over my family. I just sit there, listening to the hum of the engine and staring blankly at the Sky Mall magazine shoved into the sleeve of the seat in front of me, hoping we will start our descent into Chicago soon.

Then, I feel something hit my shoulder.

It’s Cool Guy. He hands me two trial-sized Bacardi Silvers and a Diet Coke and says, “You need this more than I do.” I pour the rum into the Coke and that sweet taste of Puerto Rican Rum and bitter aspartame is the most soothing drink I have ever had.

We started talking. He tells me he grew up in Vermont and lives in Los Angeles. He works in “the business.” “You’re brave to take a kid on a plane,” he says. “I have three kids, and I won’t drive them from Long Beach to Malibu.”

“Does your son have autism?” he asks.

“Yeah,” I say and I tell him about some of the difficulties, and some of the triumphs.

He doesn’t say, “That must be hard” or “You’re a great dad.” He just listens to me. Allowing me to feel human for just a few minutes. He turns what was the most horrible flight of my life into the most memorable flight of my life.

We land in Chicago. Whenever I have a heartfelt conversation with someone I am never going to see again I want to say something like, “May the Universe treat you well,” but I never end up saying anything that poetic and goofy. Instead, I said “Hey, if you’re ever in Vermont again…” He stops me, smiles and says, “I’ll stay in a hotel.”

Then, my family and I entered Chicago O’Hare International Airport. My son promptly finds a bookstore and demands I buy him a second copy of the same Cat in the Hat Pop Up book I’d bought him two hours earlier in Vermont.

Thank you, Cool Guy, may the Universe treat you well.

Image via Thinkstock.

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When a Stranger Questioned Why I'd Have More Children When My First Is Autistic

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I remember the day I met you four years ago. We were brought together in the name of volunteerism. As we sat in the conference room awaiting our assignment, small talk ensued. The usual niceties were exchanged. The typical “what do you do?” and “how do you know so-in- so?” followed. Conversations soon turned more personal.

You turned to me and asked, “Are you married? Do you have children?”

“Yes, I’m married, and I have three children,” I replied.

“What are their ages?” you asked.

I took a deep breath. This is where this conversation always gets uncomfortable for me. Strangers ask questions that dig a little too deep sometimes. I told you my son was 15 and my daughters were 7 and 5. There are always questions about the gap in age between my son and his sisters. “Why’d you wait so long to have more children? Why would you want such a large gap between them? Didn’t you feel like you were starting over?”

You asked these questions, and I simply replied, “My son is autistic. He was 9 when his first sister was born. That was the time we chose to add another child to our family.”

Your response astonishes me to this day. I expected silence. I expected a change of subject. What I did not expect was this:

“Wait! Let me get this straight. You had an autistic child. You proved you could create a damaged child, then you intentionally had additional children? Why would you tempt fate like that? Has the level of your selfishness ever occurred to you?”

My heart raced. My face burned. Rage poured through me. The chatter around the room stopped, and that silence was deafening as I struggled to process what was just said to me. I somehow found a way to suppress my anger and said:

“Never have I thought of surrounding my oldest child with a sibling’s love as a selfish act. My daughters love their brother. He will always be surrounded by people who love him unconditionally… just as he is. As you have just proven to me, the world can be a harsh, cruel place. Love doesn’t exist in every corner, but it always will exist in every corner of his world because of the love of his family.”

It has been four years since that day, and I still think of you from time to time. My son graduated from high school this year. He was the first in his graduating class to walk across the stage, and there in the stands were his sisters. He has three sisters now. They were all cheering him on that night. The youngest yelled, “That’s my bubba!” when she saw him in his cap and gown. The older girls are approaching their tween years, and they still tell everyone they have the coolest brother ever.

Am I selfish? Nineteen years ago I received love in a tiny package. As time went by, I couldn’t wait to see that love multiply. Today I’m a proud mother of four. Our house bursts with love, and we have plenty to share. The love my children have life spills into our community and shines light where there is darkness. Perhaps one day, it’ll touch your dark corner as well. Today I choose to forgive you for your harsh words and your ignorance. May you be touched by a love like ours one day.

Image via Thinkstock.

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When a Group of People Asked My Son on the Autism Spectrum to Stay

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Autism moms I am familiar with, as well as myself, are ready to spring into action at any time. We come prepared with food, toys and other supplies as needed. When planning an outing to a new location, I will usually visit the place or event first so I have an idea of what to expect and know exactly where to go. As an autism mom, we are also used to exiting an event sooner than we planned due to escalating behaviors.

This was very much the case as we started out on a cool Sunday afternoon with our family. My 5-year-old son who is on the spectrum has been showing an interest in music. With this interest and others that have surfaced, we have been seeking out non-obtrusive opportunities for him to experience the respective subject.

On this particular afternoon, we were on our way to our first family-friendly drum circle a friend had told me about. We were excited to go and didn’t want to wait an extra month to complete a preliminary research visit. My husband and I agreed we would see what happens and be open to the option of leaving earlier than planned if needed.

As we arrived at the drum circle, a large group had informally assembled. As we entered the area, we went through the process of burning sage (smudging). My son found this fascinating since he always enjoys watching smoke. The group volunteers happily let him explore. In fact, he even played with a drum on the table, which isn’t something he would normally do. The larger group assembled around the bonfire, and we let our son work his way over to the group on his own time. Once closer, he spotted another fascination — fire.

After spotting the fire, he then made it his mission to get inside the circle to be closer to it. Unsure of the drum circle protocol, we did our best to keep him out of the circle. This led to several protests from my son, and after a short time, we decided to head home as the behaviors escalated.

As we were picking up our things, a lady with red hair came over. I don’t remember exactly what she said, but she let us know that it was completely fine to let him go in the middle of the circle. She said, of course, they wanted him to be safe around the fire, but we knew from experience he wouldn’t touch it. This lady among several others asked us to stay.

He entered the large circle undaunted (which was unusual for him) and went straight up to the fire. The woman leading the night was in the center talking. Feeling a bit out of place for the moment, her words floated over me until one sunk in — beautiful. She called my boy, a boy she had never formally met, beautiful.

We stood there for some time. Watching the drummers. Watching the dancers. Watching my son dance, unfiltered, free in front of a crowd of over 100 people. He was in the presence of a group that said stay. He was in the presence of a group that let him be who he was. He was in the presence of a group of people who didn’t know him, but took the time to show love.

I sat on the sidelines speechless and in tears. It’s not hard to notice the stares in the store when my son has his behaviors. For some time, it has been my wish to have my son around people that fully accepted him. Just to see how it would feel.

Wanting to stick to our bedtime for the kids, we had to end the night early. As we left, people came up to us thanking us for bringing our son. This, too, was a first for me. There were times we had faced challenges at the store or the mall, and I wanted someone to tell me it was OK. On this night, people actually did come forward.

That night my son received 100 percent heartfelt acceptance. For the first time in my experience, people didn’t simply claim acceptance, they stood up and took action. For the first time, the stares weren’t due to behavior, but were given with admiration and love. One hundred plus members of this drum circle family have no idea that on a cool evening they were participants of a small miracle.

Follow this journey on Spectrum Lane.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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What I Want You to Know About My Life on the Autism Spectrum

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My name is Alex, and I have autism.

They say my mind is extraordinary, that’s why I stand out. I never said a word until I was 12.

I’m learning how to live in a world where I don’t belong, and I say that because people like me aren’t usually accepted. When I finally did talk, everything else looked fine from the outside. So my biggest problem now is that people forget I’m on the spectrum, so they say and do things I either don’t understand or get stuck on because I can’t figure out what they mean.

I still can’t always look at people when they’re talking to me, but I’ve worked hard to get where I am with eye contact. I still have meltdowns, and I still shut people out, but it doesn’t happen as often as it once did.

I learn in black and white, that’s all I know. I don’t know body language, and I can’t read facial expressions. I also have sensory processing disorder. Most materials that aren’t cotton feel like knives or fire on my skin. I don’t like to pet things, and I don’t like fur.

On a good day, most of the time you wouldn’t be able to tell I am autistic, unless you knew what to look for.

alex with a bunny

I know what I want, I just don’t always know how to say it. I don’t always use my words. There are days where I don’t talk at all, and those are the days where I shut people out.

I graduated high school this year, but I barely made it out alive. I have no confidence or self-esteem. High school never taught me how to love myself or how to fit in.

I’m obsessed with cars. If I know you, I know what you drive. It only takes seeing someone get out of their car one time to know what they drive, and I will remember it… forever. I know most people’s license plate numbers without even trying to. I have to be careful not to look because otherwise I would know every plate on the road.

I want people to know that just because someone may look completely fine, doesn’t mean they are.

So be kind, always.

If you or someone you know needs help, visit our suicide prevention resources page. 

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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