Early Intervention and Development: From Birth to Adulthood

We are standing outside the restaurant. I’m wearing a sundress and he’s wearing a dress shirt with dress pants and dress shoes. We are standing side-by-side with an arm around each other and smiling. It was taken after dinner for our two year anniversary.

If you’ve read my posts here on the Easterseals National blog, you know that I love sharing travel stories, especially new experiences. It feels good to step out of my comfort zone, do something different, and have it go well enough to actually want to write about it.

Such is the case this time.

I spent the month of April in Houston visiting my boyfriend Juan. We’ve been in a long-distance relationship for two years now, and a 4-part series here describes how we’ve managed to keep that relationship going strong for so long.

We typically take turns flying, but I’ve been traveling a bit more than him lately. Last winter, I flew to Houston to get away from Chicago weather and celebrate the holidays with Juan, and then I flew in April to spend a month to explore a new city to see if I could picture starting a new life there. We only see each other in-person about four times a year, and transitioning from a long distance relationship to living together is a huge step. We wanted to make sure we could live under the same roof.

I flew back to Chicago in early May, and this time rather than having someone from Juan’s family drive me to the airport, I ended up taking their paratransit service MetroLift to the airport.

Paratransit is a door-to-door service offered to people with disabilities, an alternative to taking the fixed route buses. The service area — that is, the areas of town in which paratransit will provide service to disabled passengers — is much wider in Houston than the service area covered by paratransit in Chicago, where I live now. I was a little nervous taking paratransit, but I definitely felt more comfortable taking MetroLift than I did taking Uber.

The thing is, I’m an anxious traveler by nature. Part of that is just anxiety in itself, and part of that does stem from my blindness — the constant and extra planning that goes into traveling as a blind person, needing extra assistance, and worrying about being forgotten. I am not relaxed until I am safe and sound at the gate, because in my mind, anything can go wrong before that.

I prepare mentally for what could go wrong and create a backup plan in case it does. Juan knows this about me. He is blind too, and he knows that if plan A gets derailed without a backup plan, I’ll obsess over it and start to panic. When we have to make alternative plans, he’s good about planning it all out.

So when he told me his family was going to be away in Austin (where his sister lives) for Mother’s Day weekend, I started to get nervous. Who’d drive me to the Houston airport, then? Juan calmly presented plan B in meticulous detail, and I felt okay right away.

The plan was to take MetroLift to the airport and get there early. He schedules his rides based on appointment time (that is, what time he wants to arrive) rather than pickup times, because if you schedule by appointment time, even if they have to pick you up early due to other pickups and drop-offs, you’ll still arrive when you want to arrive.

Juan also assured me he’d be coming along on my ride to the airport. He said MetroLift drivers have to hand you off to an employee, so they wouldn’t just drop us off and leave us like an Uber driver might.

So, despite the bittersweet feeling of saying goodbye after spending a whole month together, when departure day arrived, I found myself actually getting excited rather than feeling nervous. I didn’t want his mom to miss most of Mother’s Day weekend, and this seemed like it would go smoothly enough. When Juan called to verify what time our ride was coming to his apartment, he also double checked that they’d walk us into the airport. I overheard him talking to dispatch: “We’ve never done this before,” he said. “So I want to make sure my girlfriend gets assistance — she’s blind, too.”

He made sure they knew we’d both have our white canes with us. They ask this anytime you book a trip anyway, but in this case he told them so they would know who to look for when they arrived at his apartment to pick us up. “I don’t want her just stranded there at the airport ,” he said. “I want to make sure the driver is going to lead us inside.”

The call was on speaker, so I could hear the friendly dispatcher’s voice assuring Juan that yes, the driver would walk us inside, and kindly describing the process of airport drop-offs.

With my trip to the airport booked, Juan scheduled his ride back from the airport for one hour later. That way he could come inside and wait with me. We had scheduled the appointment time early enough that even as our driver took a while to figure out where to park to lead us inside (she herself had never done an airport drop-off before), I wasn’t nervous. Our driver was determined to figure it out, and we had plenty of time.

When she found where to park, she led us inside, where an employee saw us and said he’d take us to the check-in counter. After I told him I was the only one traveling, Juan added, “I’m just going to wait with her to make sure she gets help to security, and then I’ll need some assistance downstairs to catch MetroLift.”

The employees were very patient and accommodating as they led us to the counter and the driver departed. After checking in my suitcase, an airline employee handed me my boarding pass and placed me in a wheelchair to wait for assistance. Being placed in a wheelchair doesn’t bother me even though I don’t need one. It’s pretty common practice in airports and I know it bothers some people. However, it really does make the overall process of getting through security a lot faster. Then there’s this: it makes me more visible and serves as a constant reminder to them that, “Hey, I’m here and I need some assistance!” I only needed to wait about 15 minutes before someone came to assist me. “I’m going to take her to security,” she told Juan. “And sir, someone is already on their way to take you downstairs to catch MetroLift.”

He thanked her for assisting me and for accommodating him as well, telling me to text him once I’ve made it to the gate. We said goodbye, and I was on my way to security.

I ended up having about an hour and a half to kill at the gate, which didn’t bother me. I felt very relieved that the trip went so smoothly. It was definitely a new experience and something I would do again for sure.

For more about paratransit and transportation services in your local area, visit Easterseals. 

This Mother’s Day, we are thrilled to introduce Sofiya Cheyenne as a guest blogger. Sofiya is a mom, actor, performance artist, teaching artist, and disability advocate. She was recently featured in the ‘That’s My Easterseals‘ PSA series to promote access to education for all children.

When my son Logan was born almost two years ago, it was the most transformative day of my life. I never knew I could love someone so quickly and fiercely; that’s when I realized being a mom changes you completely. And as a parent with dwarfism who gave birth to a child with dwarfism, I knew that this new love of mine would encounter barriers in his life, just like I have. Taking on this job is scary for any parent, but I am so lucky to have a supportive network. My friends and family have been encouraging of my growing family – especially since Logan is the first grandchild in both my family and my husband’s; it was a big deal!

Even with all the support I was privileged to have, the toughest thing about being a mom with a disability is the stigma that exists around it. When someone is pregnant, regardless of disability, the medical industry works so hard to convince these new families of a “healthy child.” What that means to mainstream society is “perfect genetics” with no differences or uniqueness – just predictability. The medical industry, and even society, can make you feel like you don’t belong and that you cannot or should not have children. They can make you feel like that you are not equipped to handle motherhood because of your difference. It is harsh, it is ugly, and it is wrong. And as you move through the world, you have to ignore these things. You have to push against these assumptions and literally dodge the negativity.

We MUST prove them wrong. It is only us that knows what our lived experience can be – our lived experience of survival that is beautifully unique. We must teach, we must advocate, we must choose the circles of doctors around us that believe the same things we do. It is exhausting and can be even defeating at times. But until the world is a place that can expect difference in the room at all times, we must push.

If you are new parents, a new mother, or a person that is starting to plan for a family, know that YOU are valued. YOUR family can thrive. As long as YOU choose the support that you need around you. YOU are in control. Do not let the doctors, the media, or society tell you otherwise. There ARE high-risk specialists and there are communities of support that value you as a person – you just have to do the work to find them. There are supportive policies and laws that exists today, thanks to the Americans with Disabilities Act, that can support your family. Your state, your county, and your school districts should all have information to support you in your child’s life.

I would encourage nondisabled and disabled people expecting a child with a disability to follow disabled parents on social media and read books by people with disabilities. Embrace disability culture and don’t be afraid to ask questions! Ensuring your child who has a disability has a connection to their disability culture is so important – it lets them know they always have a community to go to for support at belonging. The disability community needs each other to thrive and to survive – so why not give them access to culture from the very start?

Being a mom has made me a more confident, focused, and patient person. It is a selfless act, but it is also something that, if you lean into it enough, will help you grow. I don’t think there is anything different about being a mom with a disability – I just think that it comes with a different perspective. Because my son has dwarfism, my husband and I are so well equipped to handle any obstacle that comes in our way with Logan. We’ve been there. I believe in you, too – parents with disabilities out there, you’ve got this!

Hey, it’s tax season! If you are a business owner or employer who hasn’t heard about incentives to make accessibility upgrades, check out this helpful reminder from the Mid-Atlantic ADA Center. The site provides quick tips to help you figure out if you qualify. It includes an easy-to-read chart outlining federal tax incentives and shows you how to find out whether your state offers similar incentives. Three examples spell out how it might work for your business:

• EXAMPLE A, CREDIT: Restaurant ABC employs 25 individuals, and its gross revenue for last year was $3,000,000. It qualifies as a small business with fewer than 30 employees. Last year, ABC provided Braille and large print menus (an auxiliary aid), costing a total of $1,500. ABC removed physical barriers to the restaurant’s entrance and modified its transportation shuttle, totaling $8,000. Each of these expenditures qualifies under the Disabled Access Credit. To calculate ABC’s tax credit, start by adding the total amount spent on accessibility ($8,000 + $1,500 = $9,500) and subtract $250 ($9,500 – $250 = $9,250). Divide this amount by two ($9,250 / 2 = $4,625) to find the amount redeemable as a tax credit. ABC earned a tax credit of $4,625.
• EXAMPLE B, DEDUCTION: Corporation XYZ removed barriers to its building two years in a row. Although the corporation deducted $4,000 from its taxes last year, XYZ spent money on an additional barrier removal project this year. This is an annual tax incentive, so XYZ is eligible for another tax deduction. XYZ removed all barriers from its bathrooms this year, which cost $8,000. XYZ is able to deduct this amount, $8,000, dollar for dollar, from the amount of money on which it pays taxes.
• EXAMPLE C, CREDIT & DEDUCTION: Small business QRS spent $20,000 on access improvements by modifying their restrooms and front entrance. These expenditures qualify under both the tax credit and deduction, so QRS can use these incentives in combination. QRS may first take a tax credit of $5,000 (based on $10,250 of expenditures) and then deduct $15,000 (the difference between the total expenditures and the amount of the credit claimed).

Whew! That’s a lot of numbers. If you have questions, never fear – the site offers many other resources, and it encourages you to call the ADA National Network for free technical assistance at (800) 949-4232.