To the Special Needs Parent Having a Pity Party


Dear parents of a child with special needs,

I probably don’t know you, but I know that look you sometimes get. Maybe you’re feeling sorry for yourself, but you’re also feeling guilty about it. It can be common among us special needs parents, so don’t be too hard on yourself.

I just experienced that guilty sadness when my 10-year-old son had an epic meltdown within minutes of walking into a birthday party.  He hadn’t even taken off his coat before demanding that the host turn on more lights and then crumbling to the ground, screaming, swearing and crying when she said no.   

It’s ironic. We special needs parents lament about how our kids never get invited to birthday parties, and then when we finally get an invitation, we might wonder why we’ve accepted it.

It’s been a particularly difficult couple of days for me, and I’m feeling uncharacteristically bad for myself.

It’s time for a pity party.

You should know I almost always consider myself a glass-half-full kind of person. But this week my son keeps drinking from my glass, and now it’s empty.

He takes his first sip at the birthday party, and as the week progresses he keeps drinking.

He calls his brother a bunch of swear words. There’s a drink right there.

He smacks his sister on the back. That’s a gulp.

He refuses to come in from outside because he’s having too much fun. That’s a sip.

Finally he empties the contents of my glass by darting out into the street to retrieve a ball. He is about to return home when I turn around from the mailbox just in time to shout “Don’t move!” The oncoming car stops and lets him cross.

The scenario that plays in my head is much different. In this version, he is in the middle of the street and the car doesn’t stop. A parent should not have to worry about a 10-year-old running into the street.

So what do I do?

I hug my son because I’m so relieved he is safe, and then I plan to throw myself a pity party. You’re welcome to join me.  And not because misery loves company, but because sadness sometimes needs company. (Didn’t we learn that from the movie “Inside Out”?)

So now that you’re here, welcome.

Did you bring any wine?

How about brownies?

Not too many, I hope, because this party won’t last long. It can’t. Unfortunately I don’t have any brownies to offer, and I can’t justify opening a bottle of wine at 9 a.m.

I love a good pity party, but on one condition: It has to be short, and my kids aren’t invited. I guess that’s two conditions.

Feeling sorry for yourself sometimes is perfectly acceptable (and therapeutic) because every person deserves the chance to grieve. We need to accept and acknowledge our feelings even if they aren’t pleasant. We shouldn’t expect to be happy or positive all the time. That’s why I like to have a good but short pity party. 

At times I like to party solo by letting myself think all the bad thoughts, and sometimes that’s enough. There are other occasions where talking a walk is just what I need to work through all the feelings that shout in my head. It’s OK to eat an entire bag of M&Ms or my favorite, Jelly Bellys. Sometimes I call another autism mom to unload. She doesn’t have to say anything. Just listening is enough. I know she gets it.

On the day when I realized my cup was emptied, I told my son I was feeling sad. Right before he got on the bus I asked him what he does when he feels down.

“I cry,” he says.

I ask: “Does that help?”

“Yep.”

He’s right. I feel better.

The party’s over. It was a short one. It almost always is.

Like I said, bad or stressful things happen all the time, and it’s OK to grieve occasionally. Have a pity party in a way that works for you, but don’t stay too long because good things happen, too. Don’t our children give us so much more to celebrate? Common behaviors for other kids can be huge milestones for ours. And you don’t want to miss those joyful moments by spending too much time at your pity party – even if there are brownies and wine. 

Follow this journey on SpecialEv.com.

Lead photo source: Thinkstock Images

RELATED VIDEOS

Why Supporters of a Boy With Autism Flocked to This Courthouse to Protest


A family being sued because of the behavior of their child with autism is receiving a lot of support from their community.

Parul Agrawal and Vidyut Gopal are being sued by two families from their former Sunnyvale, California, neighborhood who claim the couple’s inability to control their 11-year-old son with autism constitutes a “public nuisance” and potentially caused property values to fall, NBC News reported. The lawsuit, filed by Kumaran Santhanam and Bindu Pothen and Robert and Marci Flowers, accuses Gopal and Agrawal of not doing enough to control their son who reportedly assaulted children as well as other people in the neighborhood.

In July, a Santa Clara County Superior Court judge issued a preliminary injunction against the parents and, after seven years in their former home, the family moved to another Sunnyvale neighborhood. At the judge-ordered, court-supervised mediation on Wednesday, Dec. 16, protesters lined up outside the courthouse to show their support for the Gopal family. However, the parties failed to settle the lawsuit at the mediation and now they’ll have to set a court date. 

We are very disappointed that the case did not settle today,” Gopal told NBC. “We came in very good faith to negotiate and settle this case and put this mater behind us. We were very disappointed that we were not met with the same good faith from the other side, and hence it would not settle.”

The case has implications beyond just this family, Areva Martin, the Gopal family attorney told ABC. Protestors and community members alike feel it could set a national precedent for how lawsuits regarding autism are dealt with in the future.

I find it offensive that people assume I have no compassion for an autistic family when I am simply trying to defend and protect my children from being assaulted,” Robert Flowers told Mercury News in November. “This is not about autism. This is about public safety.”

Get more on the story from the video below: 

To the Loved Ones Who Don’t Get Why We Say No to Your Holiday Party


My 4-year-old son usually behaves himself pretty well, and we’ve brought him places that other families with autistic kids are not always able to go: on planes, to Disneyworld, to the movies, major league ballparks, outdoor concerts and the ballet. Despite his inability to talk, he comes across as an easygoing, happy boy.

And he is, for the most part.

Over the course of our autism journey, my husband, my daughter and I have gotten pretty good at helping our little guy. Like most families with autistic children, we travel with a bag of tricks to break out when he needs them and techniques to use if we see that he is getting uncomfortable or melting down. We usually come across like we know what we’re doing.

That’s great, and it’s nice to be able to do “typical” things as a family. However, it can make it harder to explain to people that we have to turn down an invitation because we don’t think he can handle it. When people don’t see the meltdowns, it is harder for them to understand how difficult they can be to manage. Taking my son out is like performing a magic trick sometimes. It requires a large amount of practice and prep work beforehand, and can feel like just as much of an illusion. If I don’t perform the steps in the right order or in a specific way, the whole thing can come apart.

We have brought him into situations that might be uncomfortable for him. Sometimes we are pleasantly surprised and he has a wonderful time. Sometimes, though, the only thing we can do is leave as quickly and quietly as possible. That’s OK, too. He is learning about the world, the world is learning about him, and even a failed excursion is a lesson for us.

There are also some things we know we still have to avoid: sitting in traffic for too long, traveling too late at night and places that are enclosed and noisy. He has the hardest time in strangers’ homes, especially houses that aren’t childproofed. Then all I can do is guess at what may be a problem, either as a hazard or a temptation, and try to anticipate my son’s every move. It can be exhausting and unsafe.

Sometimes, we’re just not up for that kind of an adventure. During the holidays, there is so much potential for sensory overload that it can be easier to just stay home. He doesn’t understand the excitement and enthusiasm of other kids, and it can be a little too much for him. Sometimes, yes, it is more important that he has his therapy sessions, especially when he’s off from school for more than a day or two. Sometimes parties with strangers in strange places set him off. You might not realize that something as simple as putting up holiday decorations makes your house feel unfamiliar to him.

We have to accept these things every once in awhile because it’s OK that he has limits. It does mean that sometimes we’re going to say no. It’s not that we don’t love you, or that we don’t want to see you. We do want to be there. We feel bad saying no, and it makes us sad to have to miss out on so many special occasions with you. We truly aren’t avoiding you. Unfortunately at times, things are harder than you know, and we have to do the easier thing. We have to do what is best for him.

We will continue to push him out into the world and expose him to new things. He has come so far already, and I have faith things will get easier. Please keep including us in your plans. Even when you know we’ll turn you down. As hard as it is to say no, it’s so nice to be asked and to know we’re included. And who knows, maybe the next time you ask, we’ll be able to say yes.

Andrea’s son and daughter next to a Christmas tree

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

8 Things I Wish I Knew Before My Autism Diagnosis at 22


I am one of many women diagnosed with high-functioning autism in adulthood — far outside my developmental years. For me, my diagnosis (and my “new” life) came at the age of 22. For some women, it doesn’t come until late adulthood, if at all. These are some of the things I wish I knew before I received my diagnosis later in life. They’re also the things I want my friends and family to know now, because I was never able to express them effectively before.

1. You know just how much other people mean to you — but they don’t.

Before receiving my diagnosis, my close friends and family had a negative image of me. In their eyes, I was sometimes rude, I said inappropriate things at the wrong times or I said something honest when it was best to tell a little lie. I’ve been told that I don’t care enough about my friends, that I push people away and even that I don’t love my family. This couldn’t be farther from the truth. In reality, I love and appreciate most of the people in my life to an almost unhealthy extent. My diagnosis gave me the life-changing reminder that you need to tell people you love them and to show as much appreciation as you feel.

2. You’ll find an amazing companion to share your life with, but it’ll take time and effort.

I was lucky enough to have my loving, neurotypical boyfriend at my side before, during and after I received my diagnosis. As one may imagine, we have a lot of struggles that are directly linked to my autism: communication issues, sensory difficulties and sometimes needing time to myself. As I mentioned above, I also have to remind myself to show my appreciation for him, which is sometimes as simple as remembering to ask him how his day was. However, our problems aren’t so unlike other couples’ that we can’t work through them — it just takes more consideration and effort. You’ll find someone, too, if you’re romantically inclined (but you might not be!). You’re just as capable of finding love as anyone else.

3. If you never reach out to your friends, your friends will never reach out to you.

When you’re feeling overloaded and just need time to yourself, it’s really easy to skip out on plans. You never want to disappoint your friends, so sometimes you don’t reschedule… because you might have to cancel again. Before you know it, it has been years since you last spoke to them. Be honest and upfront if your plans change, and put effort into connecting often.

4. You’re not “crazy.”

I suffered with mental health concerns for most of my life before receiving a diagnosis. I struggled with suicidal thoughts, self harm, mood swings, debilitating depression and even health problems brought on by stress. I was previously misdiagnosed with a myriad of mental illnesses and medications never worked. I thought I was a lost cause until I received my diagnosis. Now I have coping strategies and a community of people to turn to when I’m feeling overwhelmed or depressed.

5. You’re not weird.

Are you obsessive? Super into animals or classical literature? A band most of your friends don’t care about? You’re not weird. Those obsessive interests are a perfectly normal part of your diagnosis. You care more about a single topic (or handful of topics) than most people do about any of their hobbies. You’re awesome, and you can harness that intense focus to do a lot of good in the world. Make art, write books and inspire others.

6. You’re not lazy or unintelligent.

I struggled to hold down a job and stay in college full-time before receiving my diagnosis. I now know that this was because of sensory overload, social exhaustion and executive functioning difficulties. In other words, I couldn’t juggle real life as well as other humans. Choose your jobs carefully, practice time management and take time to recharge at the end of the day.

7. You’re not ugly for dressing comfortably.

This one is mostly for the ladies, although it can spread across all genders. You’re not any less feminine for dressing comfortably because of your sensory issues. I’m often perceived as lazy and not “girly” enough, when I just dress for comfort most days. You’re beautiful no matter what you wear and don’t let society pressure you into thinking otherwise.

8. You’re you. And you’re wonderful.

Like me, you might be a mess most days. You may not be friends with your diagnosis right now. However, your diagnosis is a manual to living a more successful, fulfilling life. Use your strengths, know your weaknesses and work on the social aspects you struggle with. It’s so worth it.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

When My 6-Foot-Tall Son With Autism Sat on Santa’s Lap This Year


I was a theatre major at the University of Vermont some years ago, and my family and I still live in the area. And every year at Christmastime, the theatre department puts on a show called “The Toys Take Over Christmas.” It’s a children’s show they have performed every year for almost 25 years.

When my boys were little, I always wanted to take them to the theater, my old stomping ground, for this production. Unfortunately, I couldn’t. My older son, TJ, has autism and sensory issues and had a difficult time in crowds. Putting him in the middle of a theater production with lights, music, bright colors and lots of other kids in the audience was a recipe for disaster. So nope, for us, the theater was out.

When TJ was 10, after eight years of working with therapists and teachers on his sensory issues, we thought he might be ready to give it a try. I had recently gotten back in touch with Alan, a costume shop supervisor and friend from my UVM days, who told me that the night before the weekend of performances they open the show up to the special needs community. The tickets are free, lights are partially up and there are signers there for the hearing-impaired. I was scared and excited all at once. The theater, and that theater in particular, was so much a part of me, and I wanted to share it with my family, but could TJ handle it? Alan encouraged me to give it a try, so he set aside for tickets for me, my husband, Sean, TJ and Peter, our younger son.

When we got to our seats, both boys were excited as they checked out the scenery. It was a toy store, and there were brightly wrapped boxes, two soldier actors, a rag doll actor looking asleep and tons of teddy bears. TJ looked at the program as we all got settled into our seats on the aisle just in case we had to make a quick sensory overload escape.

Suddenly TJ yelled, “Mom! Santa — as himself! It’s the real Santa!”

Now Alan had already told me that “Santa” was really my friend, Patrick, the theater department’s technical director. TJ had seen plenty of Santas before and knew they were really helpers of the big man, but he still believed 100 percent that Santa was real, and I didn’t want to burst his bubble.

Lo and behold, both boys loved the show. They laughed during dances and slapstick falls. They sat wide-eyed the entire time, taking in the story. And I noticed as the play went on, TJ sat closer and closer to the edge of his seat, waiting for Santa.

When Santa appeared, I saw a glimmer of my friend, Patrick, but he was head-to-toe immersed in Santa, from the beautiful costume to the rich warm voice. And TJ was hooked. 

After the show, all the kids walk up the aisles to the upstairs lobby area, where all the cast members were handing our candy canes and posing for pictures, and the kids were waiting to sit in Santa’s lap.

Lauren Jordan.2-001

TJ and Peter waited patiently, and when it was TJ’s turn to sit in Santa’s lap, he asked nervously, “Santa, am I on the naughty list?”

Santa chuckled as he looked at me with a small grin and looked back to TJ and said, “No, TJ, you’re not on the naughty list, but I think your mom might be!”

My jaw dropped as I laughed, and Patrick/Santa quickly said he was only joking and we were all on the nice list. Good cover, Patrick.

Anyway, from that moment on, Patrick was TJ’s Santa. 

TJ is 15 now. His younger brother no longer believes in Santa, but TJ still does. 

TJ and I went this past Friday to the play at UVM and to see our old friends, Alan and Santa, again. This time, TJ was the first one in Santa’s lap. He didn’t have time to mess around. He worries every year that he’s on the naughty list and wanted to be reassured that he isn’t. He also wanted to make sure Peter was on the nice list, even though he didn’t go to see Santa himself.

As TJ plopped down into Santa’s lap — all 6 feet of him. Sorry, Patrick! — Santa said, “TJ, you’ve grown about a foot this year!” 

TJ asked if Peter was on the nice list (he was), asked if I was on the nice list (whew! I was, too!) and showed Santa his wish list. After Santa took a quick look, he turned to TJ and said, “TJ, I hear you’ve been walking home by yourself from school this year. That’s great!”

TJ looked stunned as a slow smile lit up his face. I started to tear up, realizing that Patrick had read a previous piece of mine describing the lengthy process of getting TJ ready to walk home from school by himself. It was a huge, proud accomplishment for him, and a big step for me in terms of letting go as TJ grows up.

As we drove home with TJ talking excitedly about Santa (“Mom, he’s my only friend who’s immortal!”), I felt so thankful for this experience and for these people. They welcome us, and the special needs community, every year. They give us the gift of a magical experience, and they keep the magic of Santa and Christmas alive for my 6-foot-tall young man.

So thank you so much, Patrick, Alan and the UVM Theatre for this gift you all give of yourselves each year to our special kids.

It is magic, indeed.

Help Me Navigate the Holidays With Autism


The holidays: an equally wonderful and intense time. There’s so much joy, love and community, but also so much stress, anxiety and chaos. While that’s true for anyone, for some individuals with disabilities it’s overwhelming. Being part of the autism spectrum, I equally love and loathe the holidays.

Every year I have a loosely planned expectation in my head: when I’m shopping, when/what/if I decorate, when/what/if I make treats and what events I want to partake in. It’s the fairytale version of doing it all, seamlessly with my regular schedule while enjoying every moment. And every year I hit a point halfway through December when I start to shut down. Expectations don’t happen. Plans frequently vary. There’s a strain on time and energy. Looking back, there are little signs peeking out a few weeks before I start to shut down. More anger flare-ups, more inflexibility with changes, unable to perform the usual amount or flow of daily activities and feeling blank and zombie-like.

My mom would say I do it every year. For years I’d deny it and try to plow on until I reached a breaking point, but I’ve come to understand myself better to see when it’s happening, and I love and am gentle with myself enough to give myself permission to be that way —  to not have as much control as I’d like. I may have to adjust a lot (which likely includes giving up some of the previously envisioned intentions), but this year I’m OK with that.

As my coping is currently decreasing, here are the biggest things I know are pivotal for me to navigate the holidays with autism and to actively be a part of the festivities with minimal or no repercussions— because I do want to participate.

1. Let me know about finalized and possible plans and functions at least a week in advance.

A good two weeks (or more) is even better. This ensures I can schedule accordingly, and if something is really important, I can include it in how I account for energy and being present. If necessary I’ll find other activities that can be compromised to make room for yours.

2. Recognize and respect my need for extra downtime outside of regular obligations.

A majority of spectrum individuals are energetically sensitive, myself included. We’re naturally more in tune with and involuntarily pick up a lot from our environment. When things are going well it’s usually just our immediate surroundings. During the holidays, however, we can pick up and feel everyone and everything in the house, community and country. We shut down quicker and need extra recuperation than usual to get to a solid base. Please let us have that, especially on stressful days.

3. Even if I rarely show up at events, please continue inviting me to them.

I always feel bad if I don’t actually make it. It’s not because I don’t care or wasn’t interested. Sometimes it’s because of previous obligations or the location. Sometimes it’s because the day or hours before I didn’t have the energy or ability to attend without sacrificing current functioning. Regardless, I am there with you and enjoying it in spirit. Whether I’m absent a few times or a lot, keep including me in opportunities. It lets me know you love, appreciate and care enough that you do want my presence there and I will be warmly welcomed whenever I’m able to attend. It means more than you know.

4. Help me prepare a plan if I become overstimulated or can’t handle any more.

No matter how well functions go, there is almost always a point where we need to leave soon. Or now. If we’re lucky that’s the natural end of the event. Knowing my telltale signs of when I’m starting to withdraw or lose functioning will help both of us, whether it’s from your own observations, specific body cues we’ve agreed upon or me directly saying I’m reaching the end and am pretty much done. We’re trying to avoid becoming so overstimulated that a meltdown or breakdown could occur, and we don’t want that. If we can’t leave, help me find a safe, quiet space where I can collect myself uninterrupted.

5. Be flexible with how things play out; gently support and remind me the “new way” is OK, too.

Extra activities equal higher energy taxation. This might mean more time getting ready, as we’re probably dealing with the anxiety of the impending event or that we’re not able to fully interact or stay as long as intended. By staying calm and flexible, you help us breathe and (start to) let go of rigidity. If we begin to stress out too much, calmly telling us the “new way” is OK lets us know you support us. We need to hear that.

6. Continue to love me, no matter what form I’m in.

We often beat ourselves up for not fully materializing our intentions. There are days we can handle it better, but there can be days where functioning is lower and we’re only able to do self-care. Above all, continue to show and tell us how much you love us, no matter how we look that day. We’ll always take note, appreciate it and give the same love back.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. 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. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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