What Attending a Birthday Party Is Like When Your Son Has Autism


Two kids, Aiden and Davey, have been invited to a fifth birthday party for their friend at a local play gym. Both boys have known the birthday boy since they were born. The mothers have all been close friends since being pregnant together. When the boys were babies, the mothers and children saw each other several times a week through constant play dates, birthday parties and mom’s nights out.

But as time passes, they start to see each other less and less frequently. Davey has been diagnosed with mild autism and Aiden is a bright, typical child. The kids go to different schools. Davey in a special education inclusion class at the public school. With sports for Aiden and twice weekly occupational therapy for Davey, playdates have become harder and harder to arrange.

The moms still feel close, but by the time the boys are 5, it seems like the only time they see each other is at group birthday parties. Aiden arrives at the play gym. He runs into the room, grabs another boy’s hand and races off.

Minutes later, Davey and his mom, Joan, arrive. Joan leads Davey over to where the other kids are lining up on a mat for their activity. She smiles at the moms who have much younger children clinging to them and looks longingly at Tammy and the other moms.

“Davey, can you play with your friends? It’s trampoline, your favorite.” Davey nods bravely and sits next to Aiden. “That’s my good boy.” But as soon as Joan starts to move toward the group of moms, Davey bursts into tears.

“Mommy, I want to play with you!”

Giving one last look toward the other moms, Joan drops down behind the line of kids with a hand on Davey’s shoulder. As each kid takes his or her turn on the trampoline, Davey and Joan cheer loudly for them. When it is Davey’s turn, he jumps and jumps with a huge smile on his face. Then he returns to sit with Joan.

“Look honey,” Joan says. “It’s Charlie! Why don’t you go play with him?”

Davey glances briefly at Charlie and shakes his head. “I want to go on the trampoline again.”

“Trampoline time is over for now Davey. But Aiden and Charlie are climbing a ladder over there. Doesn’t it look like fun?”

“No, I don’t want to.”

Just then, one of the “coaches” walks over and entices Davey to try an obstacle course. Out of the corner of her eye, Joan watches Davey’s progress and slides toward her friends. Davey seems engaged with the teenage coach, so Joan takes a minute to greet her friends warmly.

“I didn’t even see you here! How’s Davey doing in his new school?” Tammy asks.

“He’s really happy there and his teachers are great! How is Aiden doing?”

After about 5 minutes of happy chit chat, Joan looks up to see Davey sitting by himself in the middle of the room playing with his socks. He looks content and oblivious as kids he’s known since he was a baby race by on all sides.

Joan is torn. Davey looks fine, but she knows it’s important for him to interact with his neurotypical peers and there aren’t so many opportunities.

After a few minutes, Joan politely turns away from her conversation and walks toward Davey. On the way, she taps Aiden on the shoulder and says, “Aiden, can you go play with Davey?” Aiden grins and runs to his friend.

“Come on Davey, let’s play!” Aiden says, tugging Davey up even though Davey is much bigger than he is. Davey smiles happily at Aiden and then runs off in the opposite direction.

Still watching, Joan meanders back to the group of moms. But she is not really paying any attention to what they are saying. Finially, giving up, she helps guide Davey through an obstacle course, prompting him the whole time.

“Davey, climb over the bridge. That’s it…” She loves playing with her son, but sometimes she gets lonely for her friends.

At the end of the party, the kids all sit down for pizza. Davey sits politely and eats while the other kids run all around. Then suddenly Aiden sits down next to his friend and asks him about Davey’s favorite subject, Thomas the train. Davey starts smiling and talking animatedly about trains. Aiden takes Davey’s hand and they start to play with a small car on the table.

Joan smiles and the tension leaves her body all at once. Tammy walks over and says, “Fun party. I’m glad Davey’s doing so well. Let’s set up a playdate soon.”

And all is right with the world.

The names is this piece have been changed at the blogger’s request. 

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To the People Who Say They Are ‘Inspired’ and ‘Amazed’ By Me


I can’t count how many times each week someone tells me I am “inspirational.”  I never know how to respond to such a compliment.

I suppose I should say “thank you,” but often I am left too dumbfounded to respond. The encounter goes something like this — I’m headed toward the bathroom on my floor at work. I press the automatic door-open button.  The motor on the door stalls. Nothing happens.

Still (obviously) needing to use the bathroom, I push my back and behind into the door to slowly guide it open. Another woman headed in my direction sees me struggling and offers to help. I decline her offer, because I really can open the door myself, and I would probably fall over if she took it from me since the whole weight of my backside is now pressed firmly against it.

“Thank you, but I’ve got it, ” I say.

“You’re so inspirational, ” she says with a smile.

There is an awkward silence as I ponder what she has just said. Am I inspirational because I can:

A) Respond to her offer of help?

B) Open a door without assistance?

C) Go to the restroom?

Even though I’m unsure just what I’ve done to inspire her, I’m glad she seems inspired… and also, that I finally made it into the door. I avoid answering her by looking down as I hurry into the restroom stall.

Later in the same day, I get into a cab. I am always particularly inspirational to the cabbies in our nation’s capital. Sometimes they are enthralled just by my existence.

Cabbie: “Where do you work?”

Me: “I work for the DC government.”

Cabbie: “Oh, so you work in there in the cafeteria?” (points toward the food court in my building).

Me: “No. I’m a lawyer.”

Cabbie: “So you answer phones for the lawyers?”

Me: “I answer my own phone. I am a lawyer.”

Cabbie: “Really, so who cooks and cleans your house for you while you’re at work?”

Me (bewildered): “No one. I cook and clean when I get home.”

Cabbie (with mounting, considerable shock and awe): “But your parents must help you, right?”

Me: “Well, I have plenty of friends and neighbors who help me with things sometimes, but I do not need my parents’ help.”

Cabbie: “So…. you really can cook?”

Me: “I hope so. I love food too much to starve to death.”

Cabbie: “And clean the floors?”

Me: “Yep.”

Cabbie: “And get yourself ready for work?”

Me (rolling eyes at this point) “Yep.”

Cabbie: “Wow!  That is amazing.”

Really, Cabbie? Amazing?

I’m not so sure.

You know what I think is amazing?

A double rainbow. The Navy Seals who found Bin Laden. The guy who walked a tightrope across Niagara Falls.

Those things and people are amazing. Me coming home to make a tuna sandwich?

Nope.

A baked potato?

Nah.

How about a Mexican casserole?

Well… it might have a little something on the double rainbow, but I’m pretty certain it falls just a little short of true inspiration.

I am just like anyone else in this town — trying to make a living, help others daily, and lead a happy, productive life. I put on my pants the same way you do every morning.

It just might take me 3.7 seconds longer. Do those 3.7 seconds make me inspirational No, no more so than my decision not to give up on myself and just leave the house without pants.

My day-to-day life is not lived to inspire, but to aspire. I start each day with a set of goals and I make it my business to accomplish them before the day is through.

Don’t we all?

Same game. Same aim. Different attack.

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What Having a Son With Special Needs Taught Me About Fear


When I was pregnant with my first and only child, I remember saying to my husband, “I don’t know what I’ll do if we have child with special needs. It has to be so hard, and I just don’t know if I could do it.” Little did I know my beautiful son I was carrying inside me had a duplicated chromosome that would eventually create a number of challenges for him as well as for his father and me. The thing I feared most was about to become a reality for us, and I had no idea how getting a diagnosis would later change who I was and who I wanted to be.

I gave birth to my beautiful son, Carson, on a snowy Sunday morning in January of 2001. It was an easy delivery, and other than his having a severe case of jaundice, I had no reason to be concerned for his health. Everything seemed perfect. Carson didn’t seem hungry enough right away, but doctors and nurses dismissed my concerns and said he would eat when he was ready — newborns don’t starve themselves. So I assumed he just needed some time to work up an appetite.

Carson was alert for a newborn like no child I had ever seen before. He stared at his father and looked deep into his eyes. He looked around and took everything in. Every noise or ray of light caught his attention. Everyone was in awe over his bright eyes and ability to track stimulation from the beginning.

But deep inside, my husband and I knew something was different about our son. He screamed nonstop, he wouldn’t eat and he seemed so interested in his environment that he wouldn’t or couldn’t shut down to sleep. It was exhausting and scary, but the worst part was that no one believed us. We were told we were nervous first-time parents and that we we needed to relax.

Finally, after several months of stress, someone noticed what we were talking about. Someone actually believed us! Our son was diagnosed with dysphasia and deemed a “failure to thrive.” This sparked almost two years of testing and therapy which eventually led to a diagnosis of autism. The one thing I said I didn’t think I could handle was a child with special needs, and there I was with a child with autism — and I was so relieved and happy to get that diagnosis. Finally someone had believed us and taken the time to listen and pay attention to our son’s behavior. It took almost three years to get to that point. Three years of pure exhaustion and trying to prove to friends, doctors and coworkers that we weren’t crazy, nervous parents. Finally we had answers, and we could move forward with therapies and services to help our son.

Carson is 14 years old now, and he’s doing wonderfully. Things aren’t easy for him, but he works hard and does his best. It took us 12 years to find a geneticist who was able to tie all Carson’s struggles together and figure out that he has Dup15q11.2, a duplicated chromosome. Carson may never drive or receive a high school diploma, but I believe he could have a relationship and live somewhat independently with help and supervision.

My son is my hero because he changed me. He has helped me get over my fears of people with disabilities. I didn’t even know I had that fear until I became a mother, but looking back to that moment I said I didn’t know what I would do says so much about where I was at that point in life. I didn’t have faith in my abilities as a mother or confidence in myself. I tried to ignore people with disabilities because I was afraid of saying or doing the wrong things and hurting their feelings. It had nothing to do with them, their needs or their feelings — it was my own insecurities that made me feel like I couldn’t take care of someone who had special needs.

But doesn’t everyone have “special needs?” Aren’t each person’s needs unique? Doesn’t everyone require a certain kind of attention and emotional support? I look back to that person I once was and ask myself what made me so insecure that I felt I couldn’t do it. Why did I fear someone in a wheelchair or who couldn’t speak? I now know my own self-confidence was to blame. I was afraid of experiencing anything I didn’t understand or have experience with, because what if I screwed it up? I was afraid to go places I hadn’t been or talk with people I hadn’t met, because what if I said the wrong thing? This had nothing to do with my ability to parent a child with special needs — it had to do with my fear of change. I was afraid people would see me as different if my child was different.

Funnily enough, I’ve found it’s not uncommon to have this fear. It’s how you deal with your fears that sets you apart. My son helped me to see myself from a different angle. I was no longer a spectator — I was living in the world of a special needs child. I see the fear in others’ eyes when he says something off the wall and they don’t know how to respond. I see how people stare when he is behaving in a way they aren’t used to. I was that person once. I stared and rolled my eyes but was to afraid to offer help or engage with the person, because what if it made me uncomfortable?

Let me offer advice to anyone who lives with fear. Fear holds you back from experiencing new and potentially wonderful things. Fear can prevent you from becoming the person you want to be. Fear can prevent you from meeting fantastic people or visiting places you’ve never seen. Fear stands in the way of saying, “I can.”

Fear is natural, but it’s not always necessary.

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The Ways My Sister Supports Me That I Don’t Always See


I’ve had the same best friend my whole 24 years of life because my best friend also happens to be my twin sister. Growing up, Andrea and I did pretty much everything together. It never seemed to bother her that I had cerebral palsy and it still doesn’t. In fact, she is one of my biggest supporters.

Walking in crowds is when I notice her support the most. If I lag behind, she’ll ask me if I’m okay and wait for me to catch up. But at the same time, she is constantly pushing me to move forward and do all that I can. Not in a way that is rude or impatient, but in a way that is equal parts compassion and tough love. And somehow it works.

I don’t always see her other ways of support. She fields questions about my CP from people who, I guess, don’t want to offend me. They are curious and that’s okay, but I’d rather them ask me personally. And I know she’s said that to them because she knows that’s what I want.

She defends me when people voice their opinions about my disability. Everyone seems to have them. How I SHOULD act. What I SHOULD feel. What I SHOULD do. Some I agree with. Others not so much. She sets them straight and reminds those people that I have a disability, but it is not who I am.

She’s my friend, my cheerleader, my defender and I love her for that. Sometimes I may be a few steps behind, but you can bet that she’ll be right there with me, cheering me on and pushing me to be the best that I can be.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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She Wasn’t Just My Teacher. She Was Someone Who Understood.


In the summer of 2005, my family and I moved into a new house. This meant I was attending a new building for 3rd grade. On my first day of school, I was nervous because I didn’t have any friends. Due to my bilateral hearing loss, I had to carry a “box” with me everywhere I went, that helped me to hear the teacher better. I was nervous because I was different than all the other kids in my class. However, I knew things were going to change when I met my teacher, Mrs. Neth.

When I had a meeting with her, she explained to me that her daughter was deaf and she understood, and has seen firsthand, the struggles that come with being hard-of-hearing. I enjoyed going to school because of my teacher. I loved it! Occasionally, I would stay in the classroom during lunchtime and we would eat our lunches together. Even though she was my teacher, she was also my friend.

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When the school year came to an end, Mrs. Neth retired and moved out of state. We exchanged addresses and we would frequently write letters to each other. She was visiting some family members in town, back in 2010, when she heard about how my health had taken a drastic turn for the worse. She reached out to me and when the time was right, we planned to meet again, face-to-face.

Still to this day, we plan to get together once every couple of months. She has “taken me under her wing” ever since I first met her 10 years ago. She has sat in my hospital room and visited me when I was at my worst. She sends me cards and other little pick-me-ups at times when I need it most. Knowing that I get to see her again gives me hope and something to look forward too. She has blessed me with such an amazing friendship, and despite the distance, is always one phone call away.

Thank you Linda Neth for being my first friend on that school day in 2005. Thank you for always looking out for me, for considering me as one of your own children. You and your husband are the most selfless people I have ever had the pleasure of meeting. Thank you for always lending your hand when I need one. Thank you for bringing sunshine into my life during an extremely hard time with my health.

Thank you for being my friend and walking through my battle by my side.

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These Are the Biggest Disability-Related Events in Each State


Below are many of 2015’s conferences, advocacy events, fundraisers and sporting events geared toward people with disabilities. There’s a lot going on, and we’d love to hear from you if you attend any of these this year. And if you or someone you love plan to attend an event not mentioned on this map, please include any information about it in the comment section below.

Scroll down for the biggest disability-related events in each state.

Mighty-Map (click to enlarge)

Alabama

Alabama Assistive Technology Expo and Conference
Auburn, Alabama
October 20-21, 2015

Alaska

The Arc Dreamweaver Luncheon
Anchorage, Alaska
May 28, 2015

Arizona

Arizona Special Olympics Summer Games
Glendale, Arizona
May 7-9, 2015

Americans With Disabilities Act 25th Anniversary Gala + Awards Ceremony
Tempe, Arizona
July 18, 2015

Arkansas

Developmental Disabilities Provider Association 9th Annual Spring Conference
Little Rock, Arkansas
May 18-20, 2015

Arkansas Special Olympics Summer Games
Searcy, Arkansas
May 21-23, 2015

California

Special Olympics World Games
Los Angeles, California
July 25-August 2, 2015

Superfest Film Festival
San Francisco, California
November 14-15, 2015

Colorado

15th Annual Coleman Institute Conference on Cognitive Disability and Technology
Broomfield, Colorado
October 15, 2015

Connecticut

St. Vincent Special Needs and Kristin Nicole Appleberg Golf Tournament
Trumbull, Connecticut
June 1, 2015

*18th Annual Arc Quinebaug Valley Rubber Duckie Race Fundraiser
Danielson, Connecticut
August 9, 2015

Delaware

Run, Walk & Roll 2015
Wyoming, Delaware
May 2, 2015

Florida

DisAbilities Expo
Davie, Florida
October 3, 2015

Georgia

Premier Conference on the Americans With Disabilities Act
Atlanta, Georgia
May 10-13, 2015

*Summer Institute on Theology and Disability
Atlanta, Georgia
May 26-29, 2015

Hawaii

Pacific Rim Conference on Disability and Diversity
Honolulu, Hawaii
May 18-19, 2015

Idaho

Sprout Disability Film Festival
Boise, Idaho
April 30-May 2, 2015

Illinois

*Abilities Expo
Chicago, Illinois
June 12-14, 2015

*12th Annual Disability Pride Parade
Chicago, Illinois
July 18, 2015

ReelAbilities Film Festival
Chicago, Illinois
September 10-13, 2015

7th Annual disABILITY Resource Expo
Champlain, Illinois
October 18, 2015

Indiana

*National Disability Rights Network Annual Conference
Indianapolis, Indiana
June 1-4, 2015

Sprout Disability Film Festival
Indianapolis, Indiana
October 3, 2015

The Arc National Convention
Indianapolis, Indiana
October 3-5, 2015

Iowa

Iowa Special Olympics Summer Games
Ames, Iowa
May 21-23, 2015

Kansas

The Arc Annual Art Show
Wichita, Kansas
July 29-August 2, 2015

Kansas Department of Education Annual Conference
Wichita, Kansas
October 27-28, 2015

Kentucky

*National Sibling Leadership Conference
Louisville, Kentucky
May 30-31, 2015

American Association of Intellectual and Developmental Disabilities
Louisville, Kentucky
June 1-4, 2015

Louisiana

2015 Disability Rights Day
Covington, Louisiana
April 29, 2015

Maine

Maine Special Olympics Summer Games
Orono, Maine
May 5-7, 2015

Maryland

*World of Possibilities Expo
Timonium, Maryland
May 2, 2015

Sprout Disability Film Festival
Columbia, Maryland
June 21, 2015

Massachusetts

Abilities Expo
Boston, Massachusetts
September 18-20, 2015  

Michigan

2015 Learning Disabilities Association Conference
East Lansing, Michigan
May 1, 2015

Michigan Association on Higher Education and Disability
East Lansing, Michigan
May 15, 2015 

Minnesota

ReelAbilities Film Festival
Minneapolis, Minnesota
June 11-14, 2015

*Association on Higher Education and Disability Conference
Minneapolis, Minnesota
July 13-18, 2015

Mississippi

Mississippi disAbility MegaConference
Jackson, Mississippi
June 18-19, 2015

Missouri

The Arc Annual Golf Tournament
St. Louis, Missouri
May 18, 2015

Montana

Montana Special Olympics 2015 Big Sky Area Games
Bozeman, Montana
April 29, 2015

Nebraska

Disability Rights Nebraska Social Role Valorization Workshop
Lincoln, Nebraska
May 19, 2015

Nevada

National Association of Councils on Developmental Disabilities
Sparks, Nevada
July 21-22, 2015

37th Annual Conference on Learning Disabilities
Las Vegas, Nevada
October 1-2, 2015

New Hampshire

New Hampshire Special Olympics Summer Games
Durham, New Hampshire
June 5-7, 2015

New Mexico

2015 Southwest Conference on Disability
Albuquerque, New Mexico
October 6-9, 2015 

New Jersey

Abilities Expo,
Edison, New Jersey
May 1-3, 2015

New York

*Young Adult Institute International Conference on Intellectual and Developmental Disabilities
New York, New York
May 4-7, 2015

*Sprout Disability Film Festival
New York, New York
May 5, 2015

*27th Annual Developmental Disabilities Awareness Day Conference
Niagara Falls, New York
May 28, 2015

Disability Mentoring Day
Syracuse, New York
October 21, 2015

North Carolina

Diversity Matters National Conference
Charlotte, North Carolina
October 21-24, 2015

North Dakota

The Arc Inter-Agency Picnic
Grand Forks
June (date TBA), 2015

Ohio

Tech II: Technology Toward Employment Conference
Columbus, Ohio
May 13-15, 2015

Oklahoma

The Arc’s 20th Annual Shot in the Dark Golf Tournament
Tulsa, Oklahoma
May 8, 2015

Oklahoma Special Olympics Summer Games
Stillwater, Oklahoma
May 13-15, 2015

Oregon

Sprout Disability Film Festival
*Eugene, Oregon
May 6, 2015
*Bend, Oregon
May 8, 2015
Corvallis, Oregon
May11, 2015

Behavior Management Strategies for Students With Disabilities
Portland, Oregon
October 8-9, 2015

*2015 The Association for the Severely Handicapped (TASH) Conference
Portland, Oregon
December 2-4, 2015

Pennsylvania

Sprout Disability Film Festival
Bethlehem, Pennsylvania
April 25, 2015

World Conference on Special Needs Education
Philadelphia, Pennsylvania
August 17-20, 2015

Rhode Island

Rhode Island Special Olympics Summer Games
Kingston, Rhode Island
May 29-31, 2015

*The Arc Quinebaug Valley Golf Tournament
Foster, Rhode Island
July 10, 2015

South Carolina

South Carolina Special Olympics Summer Games
Columbia, South Carolina
May 1-3, 2015

South Dakota

South Dakota Special Olympics Summer Games
Chamberlain, South Dakota
May 28-30, 2015

Tennessee

Disability MegaConference
Nashville, Tennessee
May 21-22, 2015

Texas

Abilities Expo
Houston, Texas
July 31-August 2, 2015

*Cinema Touching Disabilities Festival
Austin, Texas
November 6-7, 2015

Utah

Utah Special Olympics Track and Field Competition
Logan, Utah
April 25, 2015

Vermont

Summer Olympics Summer 2015 Games
Burlington, Vermont
May 29-31, 2015

Virginia

Sprout Disability Film Festival
Arlington, Virginia
May 4, 2015

The Arc of Virginia’s State Convention
Virginia Beach, Virginia
August 10-12, 2015

Washington

Behavior Management Strategies for Students With Disabilities
Seattle, Washington
May 7-8, 2015

*Seattle Commission for People With disAbilities
Seattle, Washington
3rd Thursday of every month

Washington, DC

*ReelAbilities Film Festival
Washington, DC
April 26-May 3, 2015

*M-Enabling Summit
Washington, DC
June 1-2, 2015

*Annual Conference on Independent Living
Washington, DC
July 27-30, 2015

Abilities Expo
Washington, DC
December 4-6, 2015

West Virginia

Walk/Run for Independence
Huntington, West Virginia
July 4, 2015

Wisconsin

Disability Pride Festival
Madison, Wisconsin
July 25, 2015

Wyoming

Wyoming Special Olympics Summer Games
Statewide
May 7-9, 2015 

The Arc Oktoberfest Fundraiser
Cheyenne, Wyoming
September 26, 2015

*This event is not represented on the map above.

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