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RE: Clemency for Ledell Lee

/in , , , , /by The Arc

Dear Governor Hutchinson:

I write on behalf of The Arc of the United States (The Arc) to urge you to commute the death sentence of Ledell Lee pending a full clinical evaluation to determine whether Mr. Lee has an intellectual disability (ID). The Arc is a national non-profit organization which, for over 65 years, has sought to promote and protect the civil and human rights of individuals with intellectual and developmental disabilities through the work of its national office and over 650 state and local chapters throughout the country. Through its National Center on Criminal Justice and Disability®, The Arc seeks justice for those with ID who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability.

The Arc has deep sympathy for the family and friends of the victims in this case, and we support appropriate punishment of all responsible parties. However, Mr. Lee’s history is replete with evidence indicating a potential ID diagnosis, which would bring him under the protection of the United States Supreme Court’s decisions in Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and the more recent decision in Moore v. Texas, No. 15–797, slip op. (U.S. Mar. 28, 2017).

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID (formerly termed “mental retardation”) and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment, noting that individuals with ID “do not act with the level of moral culpability that characterizes the most serious adult criminal conduct” and that “[n]o legitimate penological purpose is served by executing a person with intellectual disability…to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.” In its 2014 Hall decision, the U.S. Supreme Court further clarified its decision that people with ID not be executed in violation of the Constitution, requiring that adaptive behavior evidence, beyond IQ test scores alone, be taken into account when determining whether an individual has ID. The more recent Moore case further confirms adaptive behavior criteria as necessary in determining whether someone meets diagnostic criteria for ID, and that such criteria must comport with modern clinical and scientific understanding of ID.

The evidence presented by the neuropsychological expert in this case, Dr. Dale Watson, supports the conclusion that if Mr. Lee undergoes a full evaluation, he will likely meet the three prongs of an ID diagnosis: (1) significantly impaired intellectual functioning; (2) adaptive behavior deficits in conceptual, social, and practical adaptive skills; and (3) origination of the disability before the age of 18. In order to complete his analysis, Mr. Lee’s adaptive deficits and history during the developmental period (before age 18) need to be fully assessed. Individuals with ID—like everyone else—differ substantially from one another. For each person with ID there will be things he or she cannot do but also many things he or she can do. Because the mixture of skill strengths and skill deficits varies widely among persons with ID, there is no clinically accepted list of common, ordinary strengths or abilities that would preclude a diagnosis of ID. Thus, the focus in assessing an individual’s adaptive behavior must be on deficits. As recently confirmed in Moore, adaptive strengths are irrelevant to this analysis and IQ alone cannot paint a full picture of whether a person has an ID. Thus, we urge that Mr. Lee receive a full evaluation for ID to determine whether he may be eligible for the Atkins constitutional protection from the death penalty.

Given the high likelihood of ID in this case, it is troubling that the lawyers who represented Mr. Lee throughout his trial failed to properly investigate evidence of Mr. Lee’s potential ID. As a result, no evidence of Mr. Lee’s potential disability was presented to the jury during the sentencing phase of his trial. If a full evaluation confirms Mr. Lee’s suspected diagnosis of ID, then Mr. Lee’s death sentence violates current prohibitions against cruel and unusual punishment as set forth in the U.S. Supreme Court decisions in Atkins, Hall, and Moore.

The Arc does not seek to eliminate punishment of Mr. Lee or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country. I humbly ask that you consider commutation to address the possibility of an unconstitutional miscarriage of justice in the case of Ledell Lee.

Most respectfully,

Peter V. Berns
Chief Executive Officer
The Arc of the United States

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Voting Independently With A Disability Is Possible

/in /by The Arc

When I became old enough to vote, I didn’t think I could because I can’t write due to having cerebral palsy (CP). A few years later, I was in an independent living program which taught me many skills that I needed to know in order to live on my own, and one thing I learned is that I had the right to ask a polling person to assist me in filling out my voting ballot. This helped reduce my fears around voting. So, when the next election came around, my boyfriend– Juan, who also lives with CP and needed help writing– and I decided to go vote for the first time. It took us two and a half hours because there was a long line, then when we finally made it to the front of the line, we had to wait for one polling assistants to become free to help us (one at a time). We both were dissatisfied with the process because we didn’t view it as very fair. We felt uncomfortable because we weren’t taken to a private area, so anyone could have overheard our vote. Plus, we were also discouraged when we realized that even if we were taken to a private area, our vote would never be truly private because the person who assisted us would know how we voted. This discouraged us from voting again for several years.

Then, in 2010, I got a job working with the Coalition of Texans with Disabilities. One of the first projects they had me working on was about voting and trying to get more people with disabilities to get out and exercise their right to vote. While working on the project, I learned about a pair of jelly switches– big round buttons that could be plugged into accessible voting machines to help with the process of voting. These buttons are for people with disabilities who don’t possess good dexterity and fine motor control. These buttons can be placed anywhere needed for them to be accessible. One button allows the voter to move throughout the ballot, while the other was to make selections. I discovered these were perfect for me because I could operate them with my feet. I was excited to be able to cast my ballot by myself and in private!

The next time elections rolled around, there were accessible machines at almost every polling place and I was anxious to put what I had learned into practice. So I went into my polling place and told them I wanted to use the jelly buttons to cast my own ballot. They got the polling person who had been trained on the adaptive equipment. She hooked up the buttons, then we figured out that the best place for me to put them was on the foot pedals of my wheelchair. Then, I spent the next 20-30 minutes casting my own private ballot. When I finished, they were as excited for me as I was for myself. As I walked out of the building with my ‘I Voted’ sticker on me, I had tears in my eyes– as I do right now– because it meant that much to me.

Susie Angel has an Associate’s Degree in Communications from Austin Community College and a Bachelor’s in Magazine Journalism from the University of Texas at Austin. She has worked as a secretary/office manager for several years and has experience as a job developer/ job coach for people with disabilities. Susie joined Coalition of Texans with Disabilities (CTD) as a VISTA in 2010 and joined the staff as a part-time employee in 2012. She edits and writes for the monthly e-newsletter, co-coordinates Pen 2 Paper, and heads up CTD’s research department. She sits on the advisory boards for SafePlace and the Austin Interfaith Inclusion Network. Susie was raised in Boston and California before moving to Austin in 1987. Her hobbies include creative writing, dramatic performance, mixed-ability dancing, modelling, and watching baseball with her other half.

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Celebrating Friendship

/in , /by The Arc

Sisters Holding Hands[1]By Jennifer Sladen, Program Manager, National Initiatives

In the hope that fostering friendships between people with different backgrounds, countries, and cultures would lead to peace by inspiring communities to connect with and better understand each other, the United Nations General Assembly proclaimed July 30th International Day of Friendship. On this sixth International Day of Friendship, let’s take a moment to reflect on how we can support people with intellectual and developmental disabilities (I/DD) to be a part of this drive to make connections and create friendships.

A few years ago, I attended a conference for direct support professionals. Al Condeluci, the CEO of Community Living and Support Services (CLASS) in Pennsylvania and a partner in the Interdependence Network, addressed the room, asking a simple question – “Who is the best friend of the person with I/DD you serve?”

The room was silent. Not because no one knew the answer, but because no one wanted to say the answer.

Dr. Condeluci pressed the group, “Who is their best friend?”

A voice near him spoke quietly, “Me.” Around the room, professionals started nodding their heads in agreement.

Silently, Dr. Condeluci walked back to the center of the room. After a pause, he said, “Being friends with the people we serve is great, but we are not always going to be there. Success is not going to an amusement park and hanging out with people with I/DD but hanging out a seat or two behind the person with I/DD and their friend on the roller coaster.”

All around the room, lightbulbs went off in people’s heads. Hands raised, asking for help and advice on how to make this happen for the people they serve.

Dr. Condeluci’s answer was not complex:

  • Give people the opportunity to form friendships with new people of all abilities, not just the professionals they interact with.
  • Encourage the people you serve to engage actively in the world and with the people around them.
  • Educate people who are uncomfortable around or ignorant about people with disabilities to encourage them to make these friendships.

Thanks to shows like A&E’s reality show, “Born This Way”, as well as the increasing number of characters with disabilities in movies and TV shows, the dialogue around our country about how people with I/DD make friends, date, and live independently is growing. But, all of us can do more to make sure that people with I/DD in our lives have opportunities to connect with people of all abilities.

People with I/DD, here are a few ideas on connecting socially:

  • Pursue activities and opportunities based on your own interests. After you have decided what you would enjoy, think about what support you will need to participate and who you would like to provide that support. If it turns out that there aren’t other people with I/DD who participate, go ahead. You can be a trailblazer!
  • Seek out friendships with whomever you want to be friends with.
  • Be yourself and open to new activities and new friendships.
  • If you have trouble making new friends or if you have disagreements with friends, talk to the people you trust about how to address these issues.
  • Advocate to include other people with I/DD in events and activities you attend.

Families and Professionals, you can:

  • Encourage people you know to include people with I/DD in events and activities and promote understanding by talking about the value that the people with I/DD bring to your life.
  • Make space and time for people with I/DD to make friends, pursue activities, and participate in the community.
  • Encourage new experiences, especially if the person is scared or unsure.

We encourage you to explore The Arc’s Center for Future Planning for ideas about how to build relationships and pursue new experiences. And, if you are a fan of “Born This Way”, register today to attend The Arc’s 2016 National Convention and International Forum to meet the cast!

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A National Call to Action on Toxic Environmental Chemicals

/in , , /by The Arc

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions. Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack. It’s time to change how we do business in prevention. We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement. For more information about Project TENDR, see https://projecttendr.com/

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now. Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.

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Roll the Vote

/in /by The Arc

I am an individual with a disability, diverse needs, and I am also civically engaged and politically active. I’ve discovered that it is nearly impossible for me to shy away from my civic duties and the issues that affect me the most. You can thank former First Lady Barbara Bush for this, as one of the most defining civic moments was when I was eight, and I gave her a tour of the residential care facility in which I lived at the time. When she asked me, “What do you want to be when you grow up?” My response was, “I want to be the first female President of the United States, but I don’t know. I have this wheelchair thing.” Mrs. Bush reminded me that one of our great presidents, FDR, also had a wheelchair thing. She also said that the MOST important thing I could do was register to vote when I turned 18.

This event inspired me to learn as much as I could about the political process and the various levels of governance. On my 18th birthday, I decided to follow the advice of Mrs. Bush and I registered to vote. It is the best decision I’ve made in my life. Ever.

Registering to vote was an uncomplicated process for me. Being informed on the issues and candidates: that was a little more challenging. I don’t speak political acronyms or legalese. Finding people who could explain things to me in an understandable manner, without treating me as intellectually inferior, was dang near impossible.

I heard a saying once that goes like this: “What’s the best way to eat an elephant? One bite at a time, of course.” I promised myself that I would approach political involvement and voting the same. Even today, I take one bite at a time, and one step at a time. I spend months reading and researching issues, ballot initiatives, and candidates so I am comfortable and confident in my decisions.

I continued to pay attention to major milestones in the disability community. In 1990 the ADA was signed into law, the same day I left the residential care facility where I had met Mrs. Bush. I spent the rest of my formative years in a small town (400-ish people) in a very rural state. South Dakota has an approximate total population of 800,000. With numbers that small, I realized that every vote is very important; it all matters.

I continued to play an active part in civics and in 2002 I was very thankful for the passage of the Help America Vote Act. This act provided information, resources and technologies which have made the voting process much easier for me. However, improved access and information does not automatically eliminate ignorance. That’s what humor is for.

In the 2014 US Senate election for South Dakota, I was happy to vote for former governor M. Mike Rounds. I had spent months volunteering for his campaign. I was anxious-nervous, anxious-excited (like a kid at Christmas) as Election Day dawned. I went to vote.

This was the first time I was ever voting in a community that was not my hometown, and in a midsized city in South Dakota. The poll watcher, who was rather elderly, asked to see my driver’s license. No problem. She asked me to sign the register. Then, she stopped herself, “Honey, can you write your name?” “What?” “Do you know how to write?” Uh, yeah. The woman behind me in line, whom I’ve known for years, goes “Kati can not only write her name, she can spell it, too.” “What?” “I’ll have you know the woman you are speaking about is college educated, and intelligent.” “Oh. Sorry.” I signed in, went to vote and didn’t think any more about the issue. The uninformed woman, was effusively apologetic. “I just didn’t know they let your kind vote.” “Really, what kind is that…humankind?” Well, no, uh…

Subsequently, I’ve seen the poll-watcher at various events in the community. I feel like I should write her a thank you note. I genuinely appreciate her. She is a constant reminder for me that while we, as the Disability Community, have come a long way, we still have much work to do to be seen and valued as equals. It is people like this woman who continuously emphasize just how important my vote is, and why it is vital that I show up to the poll.

In the 1990s, there was a movement called ROCK THE VOTE, to register and politically engage young people. With the upcoming presidential election, the time has come to ROLL THE VOTE, to register and politically engage people with diverse needs and disabilities.

Kati is a small town, South Dakota woman who rolls through life. She is simply trying her best to positively change the world. The former governor for whom she voted is now United States Senator Mike Rounds (R-SD), and it is Kati’s pleasure to work for him as an administrative assistant and researcher in one of his regional offices.

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Transferring Guardianship Across State Lines

/in , /by The Arc

By Scott C. Suzuki, Esq., Special Needs Alliance

Many individuals with intellectual or developmental disabilities are capable of making their own decisions, with or without support, and do not need a guardian. If, however, a person with disabilities has a guardian, there are likely to be complications that should be considered before one or both of them relocate to a different state. It may, in fact, be a good time to consider whether a more limited guardianship, power of attorney or supported decision-making might suffice.

Laws governing guardianship sometimes differ significantly from one state to the next, and depending on the jurisdiction, you could find yourself bogged down in red tape for months. The definition of “capacity” varies, as do limits on a guardian’s authority and numerous other factors. Sorting through the details is sufficiently complicated that it would be a good idea to consult with special needs attorneys from each state involved to make the transfer as smooth as possible.

When transferring a guardianship between states, it is important to determine whether the states have adopted the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). To date, 42 states, Puerto Rico, and Washington, D.C. have enacted the statute (click here for an up-to-date tally). Jurisdictions that have adopted this act will generally recognize the legal findings and guardianship orders issued by other states that have adopted UAGPPJA. The act includes a number of safeguards to ensure that when a person under guardianship moves between states, the move is made for appropriate reasons. In relevant part, the UAGPPJA requires that:

  • the relocation is in the best interests of the person under guardianship;
  • plans to support the person under guardianship in the new home are “reasonable and sufficient”;
  • no parties oppose the move; and
  • the relocation is permanent.

Under UAGPPJA, the guardian requests permission from courts in both the originating and new home states to begin proceedings, and the back-and-forth process becomes largely clerical, streamlining the process. There are exceptions, though. The use of different legal terms by the states involved can slow operations, but veteran attorneys can usually plow through the semantics. And sometimes, jurisdictions retain the right to add steps. When my home state of Hawaii adopted UAGPPJA, the legislature gave courts the discretion to hold evidentiary hearings.

In instances where both states have not approved reciprocity, complications can multiply. Guardians may need to petition the court in the originating state to allow the transfer to take place and may have to start guardianship proceedings from scratch in the new state. Fees could mount for attorneys, medical experts, and others, and the new court may ultimately disagree with previous findings. In the meantime, guardians must continue submitting reports and accountings to the first state. I know of a situation in which the process took two years and involved considerable expense.

The Special Needs Alliance (SNA), with highly experienced member attorneys in most states, is an excellent resource if you’re considering a relocation. SNA attorneys can advise you concerning not only the requirements for transferring guardianship, but also regarding differences in public programs and the availability of local services. If you’re thinking of moving across state lines, it’s best to begin planning as early as possible.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families. The views expressed in the blog are those of the author.

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Insuring the Future of The Arc

/in /by The Arc

Have you ever considered the possibility of making a more significant donation to The Arc? For many families and supporters this probably sounds impossible, but it may be easier than you think.

When we were young and concerned about an uncertain future, many of us bought life insurance as a hedge against a situation that could devastate our young family. Life insurance was a tool that provided financial security for our loved ones’ future.

As time passed and we built a ‘nest egg’, we find that the importance of that life insurance shrinks. The kids grow up and become independent, we build a retirement plan and some of us may have invested in real estate and/or financial investments that provide security for our remaining years. Even if we have a family member with a disability, many of us created a special needs trust to ensure they are cared for without it affecting other financial needs that our families have. Therefore, the life insurance policies that were paid for over many years can now serve as a great way to give a gift of value that may not be needed by your family.

Please take a few moments to think about whether you too might be able to make a gift of a life insurance policy to The Arc. It’s an easy gift to make; it simply requires adding a beneficiary or changing the ownership on an existing policy. If the policy is already paid up, there would be no additional cost for making a very special gift that will benefit future generations of people with disabilities and their families who will continue to be served by The Arc.

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From Small Towns to the White House, The Arc’s Interns’ Perspectives on Celebrating 25 Years of the ADA

/in , /by The Arc

By Taylor Woodard and Mike Nagel. July 26, 2015 will mark the 25th anniversary of an important, but too often overlooked, moment in civil rights history: the signing of the Americans with Disabilities Act (ADA). The Arc’s Paul Marchand public policy interns, Taylor Woodard from Junction, Texas, and Mike Nagel from Wyndmere, North Dakota, both of whom ventured into the nation’s capital determined to change disability policy, had front-row seats to the White House’s official ADA commemoration. Here is a description of that historical occasion though their eyes.

We were in awe as we were escorted through the halls of the epicenter of U.S. government by various members of the Armed Forces. Once at the celebration, we excitedly wandered through elegant corridors and ornate rooms, nibbled hors d’oeuvres, and mingled with disability community leaders and advocates as we waited for the President’s remarks. Photos and videos do not do justice to the elegance of this magnificent building.

After we had soaked in the scenery for a bit, we made our way to the East Room, where the main event was to be held. We were fortunate to snag front-row seats to hear President Obama’s address. From here, we could see so many prominent figures of the disability rights movement: former Senators Tom Harkin and Bob Dole, former Congressman Tony Coelho, as well as Representative Steny Hoyer, House Minority Whip. Finally, the big moment arrived: President Obama, followed by Vice President Joe Biden, stepped up to the podium and began.

With great passion, the President spoke of “tear[ing] down barriers externally, but…also…internally.” He continued, proclaiming “That’s our responsibility as Americans and it’s our responsibility as fellow human beings.” For young advocates like us, the President’s words certainly ring true: attitudes in society can be, and often are, barriers in and of themselves. And we, as well as all advocates, must remember these truths as we strive for a more inclusive tomorrow.

In closing, President Obama poignantly outlined the accomplishments of the past 25 years as well as laid a path for the future. For us, this future would include ending unnecessary restraint and seclusion, assuring a high-quality education for all, creating supports and services for people with I/DD to live and work in the community, and protecting rights to self-determination and quality of life.

As the crowd applauded, a very different cheer erupted several thousand miles away in two of the nation’s tiniest rural communities, as our proud parents watched their son and daughter shake the hand of the President, a moment we will never forget.

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On Mother’s Day, a Conversation With Mom and Board Member of The Arc, Kelly Piacenti

/in /by Guest Blogger

Kelly Piacenti is a mom to four: Allie, Olivia, Nick, and Frankie. Kelly is the Assistant Vice President, MetLife Center for Special Needs Planning, and a member of The Arc’s national board of directors. This Mother’s Day, we caught up with Kelly about what being a mom of a child with significant disabilities means to her, and how The Arc is a part of her life.

How did you and your family get to know The Arc?

Back in college, I worked in a group home in Massachusetts. I was going to school to become a social worker, and for four years I worked with people with intellectual and developmental disabilities. I used to take those individuals to activities run by The Arc. So I knew about The Arc long before I had Nick.

When Nick was born, they told us to expect him to live a few months. Then they said to set our sights on 2. On January 7th, my Nick turned 14. He has defied the experts.

In my line of work, I travel all over the country and I get to see what chapters of The Arc are doing. Most recently, I visited The Arc of Hawaii and The Arc of Anchorage.

What does it mean to be a mom of a child with very significant disability?

I thought I had it all before Nick – two kids, a house, both my husband and I had great careers – but Nick really put life into perspective. For a while, you feel like everything is falling apart – but then we woke up, and realized what Nick gives us.

Nick’s smile means a whole lot more than many people’s words. He gives us the ability to focus in on what’s important. I just want all my kids to be happy and I want to provide them a good quality of life. The things I worried about before – spills on the rug, getting someone to soccer on time – I don’t worry about now. Nick has taught me more than I’ve taught anyone else as a mom.

As a member of The Arc’s national board, I’m all about the people with I/DD and the families that don’t feel like they have a voice. There’s a core group that just need support – information, a way to talk to each other, a connection.

My family is very fortunate. I’m there on the board to advocate for people like Nick that don’t have the resources, time, or energy to fight for what they need. Before Nick came into our lives, I didn’t have this in me – Nick gave me this ability, this drive.

What type of support do you receive from The Arc and from others in your family and community?

I’m a member of my local chapter, The Arc Morris in Morris Plains, New Jersey. I’m involved because I get so much information from The Arc locally and nationally. Nick doesn’t get services from my chapter – he may never – but it’s valuable to my family because of the depth and breadth of knowledge within The Arc’s network. I read The Arc’s website because I know it’s a fantastic source of information on all kinds of topics out there. I respond to their Action Alerts because while Nick may not be receiving the services in jeopardy now, he may down the line.

When families of children with significant disabilities call me, they crave information. I tell them The Arc’s website is the place to go.

What support would you like to receive that you aren’t receiving — how can we at The Arc do better to include people with the most significant disabilities and their moms and families in our work and our lives?

I talk to a lot of families with family members with significant disabilities in my role with The Arc and my career at MetLife. Many of them discount organizations like The Arc because they don’t utilize the services they provide. But they also need information, and a connection – and The Arc provides that.

I think we need an online place to communicate – a blog or forum where families can talk to each other. For those of us who are parents of children with significant disabilities, it’s all about the quality of life and seeing what’s out there. We need to connect and we can lean on The Arc’s expertise. From The Arc, I follow what’s going on with states setting up ABLE accounts, where there could be sibling group opportunities for my other kids – it’s about seeing what’s out there for us.

The Arc can and should capture the interest and engagement of all families. Do we know who is on our site at 2am looking for information, but may not be connected to a chapter? We don’t – and we should be reaching those people and engaging them.

I think all families can get involved with our advocacy work. Our Action Center is full of information to educate yourself about the policy issues that impact all people with I/DD. It’s just a matter of making those connections to these silent families.

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The Best Part of Your Day

/in /by Guest Blogger

By Shanell Mouland, blogger at GoTeamKate.com

If our Kate was to sit quietly beside me on any given day you might never know she was different. Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face. She is tall for her age; almost four. For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard. In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning. If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase. She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off. She is young and quick and can often capture her sister before me. You’ll see this scenario play out whenever we are in public. I’ve often said the four words Grace utters most in public are: “Mama, she’s getting away!”

My husband and I make every effort to do things as a family. If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city. Do I call ahead and warn them we are coming? No. Do I announce on social media that we will be there in case someone was planning a quiet dinner? No. We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat. She will probably visit most tables in the restaurant anxious to show off her turtle figure. She will explore the textures of the seats and the tablecloths and the curtains. She will protest loudly when she is not allowed in the kitchen. She will make sure each patron eating dinner that evening is fully aware of her presence. She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly. Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table: “Dat your hat, daddy? I have dat hat?” Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat. They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves. They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear: “Mama, she’s getting away!”

Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.