Tomorrow Is Too Long to Wait for Inclusion

Advocacy and On-The-Job Disclosure Belong to Those Who Are on the Autism Spectrum

Advocacy and On-The-Job Disclosure Belong to Those with ASD

Photo Credit: Legozilla/Flicker

By Kathy Porter

If you are an adult on the autism spectrum, advocacy and disclosure belong to you. Whom you decide to tell and the timing of when you choose to share this information also belong to you—because it’s your autism. It’s that simple.

Or is it?

My fear, watching my adult son re-enter the world of vocational social service agencies after ten years of steady but disappointing employment, is that his voice will be swept aside because it contradicts their well-intentioned, one-size-fits-all disclosure policy.

My son’s hard-won realization is his understanding that Asperger’s Syndrome affects his work style and that his job performance is better when his employer knows this.

He’s come up with a list of adaptive strategies that he wants to discuss with potential employers… before he’s hired.

Now, all that remains is convincing the agency staff with whom he’ll be working that his decision to disclose during job interviews is part of his self-advocacy. Because even though it’s his autism, he’s going to need their help.

And that’s the big Catch 22: before they can fully embrace my son’s ownership, they have to give up theirs.

Once that’s done, the relevant question becomes: how does he verbally take the lead in his self-advocacy when he needs communication assistance?

Create Your Own Asperger’s Script

What to say and how to say it is Alan Muir’s expertise. Muir, the Founding Executive Director of Career Opportunities for Students with Disabilities (COSD), suggests that creating an “Asperger’s script” and practicing it before the actual interview is good strategy.

Job candidates who are on the autism spectrum”can quickly explain about their ASD diagnosis and follow that up by saying, ‘How I’ve been successful in the past has been….’”  At this point, the job candidate describes any relevant strategies he/she has used in a past job or in school that were beneficial.

A few examples might be:

“How I’ve been successful in the past was to work from a written list instead of verbal instructions.”

“How I’ve been successful in the past was to remove any unnecessary distractions—I typed reports in an office away from the reception area.”

Finish this part of the conversation, says Muir, by asking: “Is that something you can do for me?”

All of these conversations uniquely reflect individual experience. The autism spectrum has been broadened to cover such an infinite number of attributes that every formal diagnosis is different; each Asperger’s script is its own fingerprint—no one script will be like any other.

It’s important, Muir emphasizes, that any accommodation (adaptive strategy) be “specific and germane to the task.”  That suggests that there is a benefit in placing the self-advocacy conversation during the interview after you talk about the job description, because you might have to ad lib.

And that means you have to practice.

“Your son,” concludes Muir, “needs to get his Asperger’s script together.”

Which he’s done. With my help, he’s created mini-scripts: one or two sentences using benefit-driven language to talk about how his being on the autism spectrum affects both his learning style and his work habits.

Here’s the beginning of his Asperger’s script:  “Asperger’s affects my work style and what I’ve found is that I’m a better employee when you know what this means.”

And here’s part of his self-advocacy conversation: “Communication is something I have to work on so I’ve written down a few things that we can talk about.”

Don’t Let Someone Else Tell Your Story

This is my son’s story and he’s chosen how he wants to tell it. That he has to first tackle an agency’s policy of “but we’ve always done it this way—our clients disclose after they’re hired,” breaks my heart.

Because they’ve “always done it this way” says everything about their “normal” values and nothing about my son’s autistic values. It cripples his self-advocacy before he’s even walked in their door, implying that they know what’s best. It’s an outdated assumption. Worse, it’s patronizing.

Because they’ve “always done it this way,” I know they’re not listening to conversations taking place on- and off-line among parent advocacy groups, bloggers, young adults on the spectrum and autistic adults over the age of 40. Advocacy conversations are being driven by their voices… voices pushing the tipping point of 21st-century autism awareness.

Voices like John Elder Robison who writes in his July 8, 2014 blog post that it’s “…time for a shift of balance in some of the organizations and groups involved with autism… Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table and parents, friends and helpers are the guests, counselors and advisors, not the leaders.”

Voices like M. Keller, diagnosed with Asperger’s Syndrome at age 30, whose blog, Invisible Strings, is such an eloquent resource about “decoding the social world.”

The collective voice of ASAN (The Autistic Self-Advocacy Network), which is a nonprofit organization “run by and for Autistic people…  created to serve as a national grassroots disability rights organization for the Autistic community, and does so by advocating for systems change and ensuring that the voices of Autistic people are heard in policy debates and the halls of power while working to educate communities and improve public perceptions of autism.”

The voice of Tim Villegas and the voices he brings to Think Inclusive, “an online resource that promotes the full and authentic inclusion of people with disabilities in their schools and communities through education and advocacy.”

The collective voices of the Thinking Person’s Guide to Autism (TPGA), which stands as “the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”  They have a Facebook community of almost 100,000 participants that is one of the most actively engaged, supportive groups online.  If you have to start somewhere, start here. I did.

Advocacy is a Learned Behavior

I found digital voices that spoke to my heart by immersing myself in autism and advocacy language online. I read blog posts and comments, clicked over to community Facebook pages, spending hours reading posts and comments there.

I waited up to six months before participating, because I was still learning. I needed to hear autistic adult voices before I could support my son with his own self-advocacy. By the time I looked up from my computer screen, I was ready to find out what was happening in my own community. I hoped that the barren landscape from ten years ago had changed.

It had. I reconnected with a parent support group that is now expanding its programs and services to support adults on the autism spectrum. I discovered conversations taking place among local business and thought leaders at universities about the benefits of hiring individuals with disabilities.

I started having conversations of my own. I reached out to local business owners and professionals, asking them to share their thoughts with me about hiring the developmentally disabled. I wanted to know how they felt about disclosure and if they felt strongly about where it should take place in the hiring process.

“Me, personally?” smiles Kellie Scott-Reed. “Legally, we can’t ask but I’d love to know.”  Reed is a Human Resource specialist with ten years of experience in both corporate and small business environments.  She describes what happened to one employee who decided not to disclose.

“We’re a call center so most of what our employees do is talk on the phone all day. The day after we fired her, I walked into her work cubicle. Every inch of her desk top and wall space was covered with post it notes detailing every conceivable conversation she might handle in a day. What a customer [who was] not happy with a service might say and what her response should be.  What she should say if a guy wanted to add on to services. What kinds of questions she would have to research first before offering solutions to that customer.

“The detail was astounding. My nephew has Asperger’s [sic] and reading all of her notes, I wondered if she did too. If I’d known, I could have restructured her job description so that there was less phone time. But she never said anything, even after three unsatisfactory performance evaluations.”

The missing voice in this story is, of course, the voice of the young woman who lost her job. Was Reed’s interpretation of a meticulously detailed work space correct?  Did it signal the careful documentation of someone on the autism spectrum? Maybe. Then again, maybe not. But if she is autistic, not disclosing was her choice. And, that’s what important.  Because it’s her autism.

Self-Advocacy Starts With Where You Are

I also spoke with Julian Roux, an engaging, articulate, 20-year-old college junior, summer camp counselor and semi-professional poker player. His most important role? He’s a “fervent self-advocate,” andthis is his story:

Ever since I was diagnosed with Autism and PDD at 2 ½ years old, and eventually re-diagnosed with Asperger’s Syndrome when I got older, my parents have taught me the importance of being a self-advocate, and they’ve taught me this skill in many ways.

They taught me to speak up at IEP meetings and file for testing accommodations at my college to help enable my success.

Going into my fourth summer as a camp counselor, I know just how important self-advocating and disclosing is, especially during a job interview. Before I started my first summer at a local summer camp located outside of Rochester, NY, I disclosed my Asperger’s to my interviewer when I was asked questions. Before the interview, I was both nervous and excited at the potential opportunity to have my first job. At the same time, I was afraid of screwing up my communication between the interviewer and myself due to my autistic tendencies.

In that process, while it felt liberating to show my prospective employer a huge part of who I am, there was also a lot of empathy and admiration from my interviewer.

In addition to disclosure, I explain that there might be times when I’ll get stressed out and need breaks – whenever I feel like I’m losing control. Children in a group who continue to bully one another would cause me to feel stress, which could lead to a meltdown. I would manage this by taking a five minute break to take a breather and think.

Julian’s willingness to talk about his Asperger’s with a relative stranger – someone who has the authority to offer him a job, no less, is a quiet act of courage. His admission that he finds kids’ nonstop teasing personally stressful makes him vulnerable. He’s just given the interviewer the best reason in the world not to hire him.

Why, I asked him, do you think you were hired?

I know that my success in this job is because I disclosed my Asperger’s to  my interviewer—that I got hired simply because I was honest about my Asperger’s: how it might exhibit itself on-the-job and what my solution for managing a potential meltdown caused by a stressful work situation would be. However, at the end of the day, the buck stops and you need to find a way to manage your Asperger’s.

Where Are You?

Clearly, Julian is an enthusiastic self-advocate who believes that “without asking firsthand for services, yourself, people may not know what you need.”  Before we finished our conversation, he pointed out that “language and the social climate that leads to the chronic unemployment among autistic individuals—two factors that can suppress an autistic individual’s chance to advocate for what they need—need to change; that autistic individuals flourish at work once they have a say on when they disclose on-the-job.”

…if disclosure is part of the equation.

There are adults on the autism spectrum with satisfying careers who never reveal their autism to their employers.  That’s part of another conversation.

For adults on the autism spectrum who aren’t comfortable advocating for themselves, because communication is hard for them, it’s important that they partner with people whose language aligns with theirs so that their fledgling self-advocacy isn’t hobbled by erroneous assumptions.  If they’re just beginning their self-advocacy journeys, their language will reflect the language of their parents or primary caregivers.

If that’s you, start by listening to other peoples’ conversations. I’ve given you more than enough resources to get you started. Take note of the words that resonate with your heart. Listen for them when you start your offline search for social service agencies that support the intellectually and developmentally disabled.  It’s okay if you make a few mistakes as you get comfortable with the process.

That’s when I redoubled my search, tossed out the language that wasn’t working (along with the people who were speaking those words) and listened harder. If you do all of this and don’t give up, you’ll find what your son or your daughter needs. This I promise you.

What do you think about on-the-job disclosure? Tell us about it in the comments section below!

Hensel_PRrKathy H Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter
julianContributing writer, Julian Roux is a Communication major going into his senior year at SUNY Geneseo. He is also a summer camp counselor, and a semi-professional poker player. You can read his guest post “Autism and Its Impact on My Poker Experience.”  Follow him on twitter:  @jcrpoker

10 Surprising Things Parents of Autistic Grads Must Know

10 Surprising Things

By Kathy Porter

Ready or not, you will soon be the parent of a high school graduate. If your son or daughter is on the autism spectrum, like mine, you might feel a tiny bit scared underneath all the euphoria of this wonderful time. Behind you trail 18 or so years of priceless memories—an uneven mix of happiness, frustration, extreme awfulness, fun adventures and educational milestones.

Ahead of you is a world of transition: the in-between stage that prepares your teenager for adulthood. The good and the bad news? There is no road map for what comes next. I know because 10 years ago, my son graduated from high school. Two years later, I searched desperately for that road map because he didn’t seem to be moving forward. Nine years after that, I realized that my family had cobbled together a hard won road map of our own.

Sure, there were days when we flew by the seat of our pants, dark nights when we didn’t have answers for the questions we’d learned to ask. We also had days when everything fell into place or when someone reached out to say, “Of course I’ll help you!”

Part of our story was finding out that despite his Asperger’s Syndrome diagnosis, our son didn’t qualify for a service coordinator after high school. He was, however, eligible for educational funds which would one day be a fantastic resource.

But right out of high school, diploma in hand, all my son wanted was a job and a car.

That decision put into play thousands of steps and an infinite number of decisions bringing him to where he is today. Looking back on everything he’s accomplished, I see 10 surprising things that I believe every parent of an autistic teenager transitioning into adulthood should know.

1. Learn to outsource

Let technology and practical choices work for you. Outsourcing is a pretty savvy time saver plus it takes the drudgery out of some necessary chores. Be smart and teach this to your teenager.

I’ll never forget the look on my son’s face when he found out that he didn’t have to type his own resume. Don’t get me wrong. He assembled the content. I wrote it all down. Then we hired a virtual assistant to format and type it. Once we had the template stored in a computer file, updates were easy.

2. About those life skills

Don’t accept that developmental delays can’t be overcome. Sometimes, what works best for mastering a particular life skill is to let timing take care of itself.

When he was 22 years old, my son’s independent living skills were assessed as “severely delayed.” At that time, he’d been driving for three years, was doing his own laundry, fixing breakfast for himself and doing all of the outside yard work. Over the next 3-5 years, he figured out how to: repair the kitchen drain pipe without supervision, schedule his own appointments, establish a solid work history, plan and make dinner, and program the GPS app on his smart phone.

3. Networking is more valuable than ever

You have a network of family, friends and professional colleagues. Never shy away from asking for what you need. People are so ready to help you. If you haven’t already joined a local autism support group, now would be the time to do so. You’ll find parents who are exactly where you are. You can help each other. And, you can reach back to offer support to the parents with young children who are now where you used to be. If there’s no local support group, consider starting one.

4. Look for volunteer opportunities

One of the best reasons to volunteer is to become a part of something larger than yourself. You get to spend time with like-minded people who share similar values, make friends, learn new skills; become a better you. If your teenager shows no interest in volunteering the first time you suggest it, ask her again in six months.

Knowing my son’s love for dogs, I thought he’d jump at the chance to volunteer as a dog walker at the animal shelter. The first time I suggested this, he brushed my comment aside. The next time I asked, not only was he ready, he handled all of the details himself. Two years after he started, a full time position as a kennel attendant opened up. One of the employees he knew suggested he apply. So, he did … and, he was hired.

5. Own the journey

If you find yourself in a deteriorating circumstance, don’t waste too much time in negativity. Once the shock has worn off, identify the problem, and then come up with a work-around for the benefit of your teenager that includes professional etiquette.

My husband and I had no reason to suspect that our son’s first job would be a disaster. He’d worked with a social services agency that focused on helping “disabled” adults find employment. Three months into this job, we knew he was in over his head. By that time, the agency had closed its doors. The only support our son had was us.

We sat him down and explained how he could ethically quit this job. Friends of his suggested companies he could target which led to job interviews he set up by himself. When a second company made him an offer, company number one received his two weeks written notice.

6. Find the teachable moments when work-related communication breaks down

In a perfect world, people are thoughtful, kind and respectful. Sadly, we know this isn’t always true. Sooner or later, your teenager will come face to face with a rude coworker. The first time it happens will be awful because she won’t be expecting it. (No one does.) Help her to find the words to defuse the next encounter… because it will happen again.

On two consecutive Saturdays, my son arrived at work, clocked in, and walked into the main lobby. One of his coworkers, a woman in her early 60′s, got up in his face and yelled, “Where have you been? You were supposed to be here an hour ago!” He was devastated but managed to step back, quietly explaining that no one had revised his schedule for an earlier arrival time. Not only did she refuse to apologize to him, over the next two months, she continued to harass him about his job performance.

He had no idea what to say to shut her up, telling me that anything he said might be grounds for “insubordination,” which could result in his being sent home. We spent several weeks talking about the best way to handle this. What could he respectfully say to make sure that this woman never spoke to him like this again?

After coming up with a sentence I thought would work, we practiced until it sounded like a spontaneous remark. The next time he was paired to work with her, she verbally jumped him. Seizing the moment, he said, “Your language is unprofessional and I don’t appreciate being talked to that way.” Her jaw dropped. From that day forward, if she couldn’t say anything nice to him, she said nothing.

7. Should your teenager tell a potential employer about her disability?

I’ve had this conversation with small business owners, people who work in the mental health and social services sectors, my son and one or two human resource professionals. Every single one of them has agreed with me. What they’re in agreement on is that knowing makes it so much easier to adapt job training and ensures that there are no on-the-job misunderstandings. The HR people I’ve talked with are quick to point out that, legally, they can’t ask. But, they’re so willing to listen.

Quite frankly, when our son was 18 years old, we didn’t know to ask. My husband and I assumed that the social services agency helping him find his first job would handle that part. Remember, too, that he didn’t then (and doesn’t now) qualify for a service coordinator. I don’t know if having one would have automatically raised that question. It’s a hard question with no right or wrong answer. The “right” answer is what works for your teenager. Today, my answer, for my son (which he agrees with), is a resounding “Yes!”

8. It wasn’t a bad job—it’s a job that wasn’t a good fit for you

Expect that somewhere in your teenager’s future is a job that she’s going to hate or one that she will be woefully inadequate to do. It’s happened to all of us so the odds are excellent that it will happen to her. Be okay with this.

I understand why my son couldn’t stick around his first job after high school. He was 18 years old drowning in sensory overload. Three months was as much as he could handle before his survival instincts kicked in. When the emotional dust had settled, he was a little wiser about what jobs he didn’t want. Better yet, when potential employers asked him for the best and worst stories from his work history, he had the perfect “how I got hit in the head with a purse by a woman who wanted to get into the public rest room that I was cleaning” story to share.

9. Explaining scripts can help create reasonable job accommodations

Set aside the alphabet soup of labels and educational jargon you’ve collected over the years. Turn them into conversational language (scripts) to describe your teenager’s learning style and work habits. Come up with 1-4 sentences that describe 2-3 good accommodations for how a job can be adjusted to play to your teenager’s strengths.

Here are two scripts my son and I wrote that might work for your teenager:

A. “Having Asperger’s Syndrome does affect my work style and what I’ve found is that I’m a better employee when you know what this means.”

B. “A written to do list is better for me than verbal instructions.”

As my son talked with employers, he realized that the words “Asperger’s Syndrome/autism/on the autism spectrum” themselves weren’t as important as what he said next. His follow up sentence: “Here’s what you need to know about that ….” was the point in the conversation when the person he was speaking to leaned in and paid close attention.

10. Here’s your “secret weapon”

Explaining scripts are great tools but they’re not enough if your teenager struggles with communication. The ace up your sleeve is that she can bring someone to a work related meeting to “facilitate communication,” for her. This is what’s referred to as a “reasonable accommodation.” (And, we wrote an explaining script for this!)

In the American Disabilities Act (ADA), reasonable accommodations can include “… the provision of qualified readers or interpreters, and other similar accommodations.” An interpreter is that someone who acts as the communications facilitator.

My son successfully engaged the services of a professional facilitator twice. The first time he requested one because his inability to communicate effectively at work was hampering his job performance. This is the explaining script he emailed to the HR manager: “Part of my disability has to do with how communication happens when I’m in a group of two or more people. It’s hard for me to keep track of all the conversations and be able to participate if I have to process everything I’m hearing without help. I would like to bring someone to the upcoming meeting, as an accommodation to my disability, to facilitate communication.” (The language in this script is the outcome of a conversation between an employee of the Mental Health Association and me.) The second time my son needed guidance in conversational support, he asked that same facilitator to attend a meeting with his vocational caseworker.

One day at a time is how my family built our road map. You’ll build yours the same way, maybe even faster using some of my 10 surprising things. Expect detours because detours are the spice of life! Be patient, remembering that this is not a race. Don’t ever settle for the expectations that someone else may have for your son or daughter. Believe that your teenager’s best days as an adult are still to come.

Photo Credit: Jens Schott Knudsen

Are you the parent of a graduating autistic teenager? Share with us your thoughts in the comments section below!
Hensel_PRrKathy H. Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter


Dancing Backwards And In Heels: Parenting A Special Needs Child

dancingBy Debbie

It is hard being a parent of a special needs child. Read Debbie’s account of feeling under the microscope and at the same time being on a pedestal. A version of this article was originally published at Fumbling About In The Dark.

“And then there’s Adult Protective Services,” the school nurse said. “Crazy, huh?”

Crazy, huh. I restrained myself from asking her, “Do you realize what you are saying?” I don’t think that, unlike previous remarks, this was calculated. I think she was acknowledging that she was just one overzealous mandated reporter in a system that rewards such behavior at the expense of parents like me. She also mentioned that other school nurses would be worse than her. If they are, then those of us with special needs kids are in deep trouble.

Parenting is never easy. There’s always things that come up that one would never expect in a million years. You love your children, but sometimes you want to disavow any knowledge of them. “That kid? Never saw her before.”

Parenting a special needs kid, however, is, to borrow a pro feminist slogan, “dancing backwards and in heels.”. A parent with a special needs kid is being scrutinized in a way that a parent of a “normal” child can neither begin to imagine nor be willing to put up with.

From the moment Kid O entered the world, I’ve been subjected to the worst kind of scrutiny. Because she was a preemie who weighed only 3 lbs, 10 oz, her birth was reported to the Department of Public Health. I was terrified when a nurse showed up. She was nice about it, but I understood the implication. Underweight premature babies were assumed to be given birth to by mothers who were poor, ignorant, and who hadn’t sought out prenatal care, and, in a word: neglectful.

One day, as I was getting ready to take Kid O on the train to see my folks, two public health nurses, a man and a woman, practically barged through my door. The man would not take “no” for an answer. I uttered utter a mild protest, stating that the regular public health nurse had told me that she would be the only one coming around. He told me that that nurse was on vacation. Even though I knew I had rights, I was afraid to say “no.” Much to my shame and horror, he insisted I hand over Kid O for a surprise inspection. I watched, speechless, as he took her over to her bassinet and undid her diaper. It was only after that that I had the wherewithal to call the Department of Public Health and canceled subsequent visits.

My neighbor, who had had a near perfect homebirth and a nice, large, full term baby, brought by literature on pre-eclampsia because she felt I needed to take responsibility for Kid O’s prematurity. She was smug in her knowledge that her expensive birthing class had produced nothing but perfect births and perfect babies. She was certain she was a far superior mother, so imagine her surprise when she couldn’t console Kid O one morning Months later she apologized to me because one couple in her birthing class had a child with CP, and were being forced out of their condo on account of the baby’s screaming.

Now, granted, it’s damned uncomfortable listening to someone whose only means of communicating distress is to go all primal. Imagine how it impacts the parents of such a being. There are times when I still get so rattled that I feel like a shooting gallery duck.

Babies can be fussy. They are wet. They cry. They are tired. They cry. They are hungry. They cry. Ordinarily if you put a baby in their carseat, they will fall asleep. Same thing if you put them in their stroller.

Kid O had such a disorganized nervous system that these tried and true methods did just the opposite. Put her in her carseat and she would cry hysterically to the point of throwing up all over herself. That didn’t stop until she was around four.

People assume that if someone requires help with toileting or feeding or dressing that they are physically weak. Kid O is not without her ways of resisting something she does not want. Just because she doesn’t have a lot of muscle mass, doesn’t mean that being kicked by her wouldn’t hurt. The girl packs a mean mule kick.

Some mornings it takes two of us to get her into her wheelchair. One to bend her legs and keep her from extending her hips, and the other to strap her in. There have been times when I have had to deal with Kid O turning herself into a human board. Eventually I would prevail, but not without an average of twenty minutes of cajoling and heavy lifting, which would leave me gasping for air.
To a casual observer, it probably looks like Kid O is screaming because her mother is abusing her. .Instead, I am being abused by people who, over the years, have jumped to painfully wrong conclusions including an allegation of sexual abuse

I don’t begrudge women their perfect children. I just always wanted the same thing. And, barring that, at least not to be thought of as if I were some criminal. Unfortunately, my circumstances are not that unusual. I have read of instances of special needs children removed from their parents simply because these people are flawed human beings. For some reason people think they can raise Kid O better than my husband and I can. I had one woman start a whisper campaign against us. Why? Because on the morning she came over, we were feeding our daughters *gasp* toast and jelly and not a full breakfast. And so it goes.

People have no idea how difficult it can be to guide a special needs child to adulthood. They have no idea how incredibly stressful it can be. They contact DCFS without considering how unnecessary and how hurtful it can be.

The last time DCFS was called out, we hired an attorney to join us at a meeting at Kid O’s school. My husband made a point of mentioning my high blood pressure. The teaching staff received his meta message loud and clear, “If anything happens to my wife…” I was grateful for his protectiveness. I could see Kid O’s teaching team shift from being on the offense to realizing what harm they could cause. Do people not consider how devastated Kid O would be if she were removed from the two people who love her and understand her better than anyone in the world?

When I am not being considered a criminal, I am being placed on a pedestal. When I fall from that pedestal, people become incredibly disillusioned with me. Neither place is comfortable. I have never asked for people to worship me. Respect and compassion would go a long way to acknowledging me and other parents of special needs children. We are neither sinners nor saints. We are just people who happen to face enormous challenges every day. And, hopefully, with a tremendous amount of grace.

Photo Credit: Elizabeth

You can follow Debbie on Twitter @MissShuganah.

Pin It on Pinterest