When Everything I Knew About Kids Didn't Prepare Me as a Special Needs Mom

415
415

​I came into this motherhood thing ready. I was in my late 20s, married, had a degree and had started a consulting business so I could work from home with flexibility. I had babysat, worked as a camp counselor, a camp life guard, an after-school program aide, a tutor, a Sunday school teacher, a youth group leader and a volunteer mentor. I once calculated I had worked with more than 1,000 children by the age of 22. I loved kids, that was just a big part of who I was. I had even worked with kids with some disabilities; when I was 14, my first job was a camp counselor for United Cerebral Palsy.

As it turns out, none of that mattered. I was utterly unprepared for what I got myself into. How could my son be so unique from the 1,000 other children I had worked with? With all that experience, surely I must have learned something, right?

Quick, what’s your instinctive response to the following hypothetical scenario? Your 8-year-old with ADHD and autism, who is doing pretty well in life overall lately, is being taken to an after-school activity that is, shall we say, “non-preferred” by a babysitter. On the way, the sitter stops to buy a bottle of water. Child proceeds to scream at the top of his lungs, run around the store, and outruns the sitter and two store employees for 10 minutes until one of the employees threatens to call the police.

I remember when my son was a baby, my late father told me to stop reading parenting books because it was instinctive. Well Dad, I hope you’re looking down because if you have instinctive answers to some of these situations, I’m sure you could find a way to send me a divine message in a bottle. Otherwise, allow me to introduce you to a new brand of parenting. It’s called “Not Very Intuitive Parenting.”

Not Very Intuitive Parenting (NVIP) means that you must intentionally eschew everything you think you know about raising children and leave your instincts at the door. Do you want to know how I handled the above situation? First, I sent him to his room, for the safety of all involved. Then I called the child psychologist to develop the consequence. Then I bought poster board and wrote up a big schedule of his activities to see. I’m currently evaluating social story software in between working full time and dealing with medical appointments for both my child and myself.

NVIP means that I’m not going to succeed at getting my child to hop to with the “mom look.” He doesn’t decode negative facial expressions. Steam could be coming out of my ears, but I need to verbally notify him that I am very angry. I remember it being a fairly obvious rule that you shouldn’t bribe children to get them to do what you want them to do. Many consider incentivizing behaviors as legitimate intervention, however, and it works for us. Applied behavior analysis (ABA) requires you to take data on behaviors like following instructions, potty training, greeting people. Again, this works for us — but none of this is intuitive.

What I want you to know about Not Very Intuitive Parenting is that usually, if you see me practicing it, I want to shout “This isn’t what it looks like!” Yes, there is a reason for why I am hugging and comforting my child who just had what looks like a “bratty tantrum.” Or why when he does something to cause trouble you might just hear me say “one point.” It might look like a dramatic under-reaction, but you don’t know that he is working hard for something and that was a big setback. Usually, if my kid is acting up I’m going to employ specific, strategic responses that have been developed with the assistance of experts and following so many hours of assessments and therapies. It may not look like a reasonable response to you. Trust that I tried it your way at first. No one had better parenting “instincts.” Turns out, I have less use for those native instincts than I expected.

I don’t mean to suggest there is no use at all for a mother’s intuition. I know how high a fever is with a kiss on the forehead. I know when something is wrong. It is the ultimate evolutionary instinct to protect my child above all else. But I also build new instincts. For better or worse, there’s no “because that’s how my parents did it” to fall back on. So, you have to come up with a new way.

My skills in advocating for my son medically and educationally have made me a stronger person. I do trust my instincts over the experts now. But my instincts have been reshaped to incorporate the wisdom of highly educated and experienced specialists whose good advice and guidance have helped him already. It’s been reshaped by online communities of folks in the same boat. It’s been reshaped by trying to keep up with cutting edge research. Now, more often than not, I make decisions based on this specialized body of knowledge rather than instincts. Or at least I do when I’m doing it right and not falling into bad habits and ineffective approaches. So if you too have absolutely no idea what you are doing, it’s OK. It’s not just like riding a bicycle. You adapt and you learn how to best help your child. And that driving love? That is the most intuitive thing in the world.

A version of this post first appeared on Red Queen Mommy.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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

415
415
TOPICS
JOIN THE CONVERSATION

17 Things Women on the Spectrum Wish Others Understood

569
569

Autism is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). A lot of theories exist behind the reason for this gender split, including the possibility of autism presenting differently in different genders and even the fact that the diagnostic tests for spectrum disorders may be based on male characteristics.

Whatever the reason for the disparity in diagnosis rates, autistic women deserve to have their voices heard.

The Mighty teamed up with Amaze, a nonprofit organization representing people on the autism spectrum, to ask women what they wish others understood about being a woman with autism.

This is what they had to say:

1. “Autism is not just for boys. So often we’re seen as anxious and shy and so we’re not diagnosed until later in life. Just because we have autism doesn’t mean we can’t do what everyone else can. We are talented individuals who have some awesome abilities and skills, so the world better watch out because we’re coming!” — Ellen Cahill

1 copy

2. “I’ll do things at my own and socialize when I feel ready too. People don’t realize how difficult it is when you’re about go into sensory overload.” — Paige Helen

3. “Just because I’ve adapted and have learned how to appear ‘normal’ doesn’t mean I’m not on the spectrum. It’s exhausting checking every move I make and reviewing every word out of my mouth to try to ensure I don’t offend people, and I often get it wrong. I’m not heartless, thoughtless or selfish. I’m autistic and genuinely didn’t know that would upset you.” — Liz Stanley

2 copy

4. “Just because I don’t always ‘seem’ like others on the spectrum doesn’t mean I’m not on the spectrum myself.” — Erin Clemens

5. “I am not less than. I am not some overlooked statistic simply because I ‘pass’ well. I am not the same as a man on the spectrum. I am not less than a woman in general, and I am not less than a man overall. I have just as much right to pursue and accomplish my passions and desires as anyone else. And I am definitely capable and driven to make those a reality and to stand on my own in the world. (Already I pick up on and am affected by gender bias of being a woman, which is usually not on equal par with men. And if they know I’m on the spectrum, bias is even more affected on top of my gender).” — Laura Spoerl

3 copy

6. “When you get angry with me for my social shortcomings it’s no different than getting angry with someone in a wheelchair for not walking.” –– Shannon Clement

7. “I’m less OK than I’d ever tell you I am, but I’m more OK than you may fear me to be. I am constantly anxious and drained, but I am also capable and tenacious. Given enough time, patience and support, I think I’ll be able to accomplish anything that I set my mind to.” — Paula Gomez

4 copy

8. “I want to socialize and spend time with people, but there is so much anxiety and pressure to fit in that it overwhelms me before I’ve even left the house.” — Jill Toler

5 copy

9. “I dont mean to check out and let my house fall apart. I’m trying the best I can.” — Tara Pitschner

10. “Telling me you don’t see me as someone with autism isn’t a compliment. It hurts for so many reasons. You obviously don’t know me well enough to see my struggles and what I’ve overcome. As someone who only recently got to the place where I understand and accept who I am, if I choose to open up to you please listen without judgment.” — Casey Malinoski

6 copy

11. “Autism defines my brain; it is neurological, and I am not interested in changing it for the world.” — Hallie Ervin

7 copy

12. “When I’m getting dressed up to go out and I ask if I look OK, I’m not asking for flattery. I’m asking for help! I want you to rescue me from being stared at, laughed at or being refused entry to that fancy restaurant for wearing an oversized t-shirt, track pants and sneakers.” — Lili Dewsbery

13. “I can be a good mom.” — Lucy Helene Magnus

8 copy

14. “When I withdraw, keep my head low and want to be alone, isolated and quiet, it doesn’t mean there is something wrong or that I am upset or I’m being rude. I simply just need to withdraw from the world to re-energize, find focus, slow my very busy brain down and find peace within myself to reset myself. It’s how I work, and it is what works for me.” — Addie Josefine De Nittis

15. “Just because I don’t react in a ‘typical’ way when facing grief or bad news doesn’t mean I’m cold or heartless. It just means I need time to process my feelings.” — Gemma Lyons

9 copy

16. “I have friends and really enjoy spending time with them. I do need down time afterwards though.” — Narelle McCaffrey

17. “What you see isn’t all I am.” — Katy Kenah

10 copy

Are you a woman on the spectrum? What do you wish others understood about you? Let us know in the comments below.

569
569
TOPICS
, , Listicle
JOIN THE CONVERSATION

Priceline’s Distasteful Adoption Commercial Could Have Been My Son’s Story

560
560

Update — Tues. Feb 23 — Priceline has since responded to this campaign.

I have a son who didn’t behave exactly like his paperwork said he would.

As we were seated on the orphanage couch five years ago, my husband and I sweat from nerves more than from the heat. After a brief pause, the director entered the room with a too-small boy. This boy was trying to burst past his escort into the room, but he was tight in her grip. She held his hand but failed to calm his excitement.

We nervously watched this energetic, lanky boy as he gave each of us a once-over. He grabbed our hands one at a time; it appeared he was kissing them, but now we know he was actually smelling them. He was processing who we were based on our appearances and our smells.

woman holding boy
Ginger and her son.

Moments later, the active child began making his way around the room, ripping our glasses from our faces. He moved like lightning and broke my bracelet before I even knew he was standing next to me.

His adoption file just mentioned he “had social delays.” He wasn’t as his file had described, but nevertheless, he was our son. On the same day he bit my husband’s arm, stole my dad’s hat and almost broke the only pair of glasses I owned, we signed the paperwork to be his parents. We could not bear the thought of what might happen to him if he were never adopted.

He may not have looked or behaved exactly how we expected, but he was still our son.

During the Super Bowl, the weather was warm for this Midwest winter. My husband and I bundled our now three boys and went for a walk. We’re not sports fans in this house, and our TV antenna stopped working last fall. Had we wanted to watch the big event, even for the commercials, we couldn’t have.

Our lanky boy looked more like a man than a child on that brisk Sunday afternoon walk. He has grown and developed over the past five years. He still has many challenges and ongoing issues. He no longer rips glasses from people’s faces, but he does have some difficulty with his preschool-level school work. He doesn’t require someone to hold his hand as we walk, but he is unable to be left on his own.

man holding boy on shoulders
Ginger’s husband and son.

And he still smells every single person he meets. We now know he has autism, Tourette syndrome and a sensory processing disorder.

As we walked with our children — our precious sons — a commercial made its debut on TV. In the commercial, a couple learns they’ve been approved to travel to Eastern Europe to meet their potential adoptive child. They reserve their plane tickets through Priceline, then travel to and from Europe in a matter of seconds.

The viewer is not shown the European child, but the parents express relief that they were able to meet him; they obviously made the choice not to adopt him.

Then, the commercial goes back in time to show the viewer what might have happened if the couple had not gone on that “introductory trip” — if they hadn’t used Priceline’s services. The child they adopted is actually a grown man.

I’m not easily offended. I have thick skin in most instances.

But I’ve seen actual couples come home empty-handed.

I’ve watched as friends walked through their baby nurseries and mourned the loss of children they barely knew.

I know of couples who have made the difficult decision not to adopt because the child’s needs were much more involved than the paperwork had outlined.

I’ve experienced the heartbreak and I’ve cried the tears. While our child was nothing like his paperwork, we still chose to adopt him. Some families have other children or different life circumstances; they don’t have the same opportunity.

Actual children are being left behind in orphanages because their paperwork doesn’t match up with their needs.

This commercial hits too close to home.

boy smiling
Ginger’s son.

I realize it was made to be funny, but I’m struggling to find the humor.

This could have been my son’s story.

I’d like to ask Priceline to pull this distasteful commercial from their rotation, but I know I am just one voice. My quiet voice won’t change their strategies. My child’s story won’t change their minds.

Maybe if we shout together against Priceline though, those who have been affected by misrepresented paperwork will feel our support as they continue to mourn children they have left behind.

Maybe if we shout together against Priceline, the orphan crisis will return to the forefront of our society’s concerns for a brief moment.

Maybe if we shout together against Priceline, one more family will choose to take the leap into the process of adopting a child. And maybe that family will be able to adopt him despite what his paperwork says.

Maybe if we shout together against Priceline, one more child will gain a family.

Want to join me and shout together against Priceline? Let’s let the company know that we take the orphan crisis seriously. Here’s how:

  • Click here to sign the petition to have the ad removed.
  • Visit Priceline’s Facebook Page and let them know their ad won’t be tolerated by those who love the orphans. Remember to use the hashtag #shouttogether and link this post, asking Priceline to pull the ad.
  • Go to the ad’s YouTube video and give it a “thumbs down.” Leave a comment using the hashtag #shouttogether and link this post, asking Priceline to pull the ad.
  • Adoptive parents, post a photo on Instagram or Twitter of your adopted child. Share the value of their lives, especially now that they have a family. Use the hashtag #shouttogether, link this post, and tag @priceline.
  • Twitter users, tag @priceline and @Darren_Huston (Priceline’s CEO) letting them know you believe the ad should be pulled. Use the hashtag #shouttogether and my post’s shortlink (http://wp.me/p6jLxk-1rn).
  • Click on one of the social media symbols on this page to share this post, using the hashtag #shouttogether. Let your friends and family know about this fight and encourage them to join. The more of us who raise our voices together, the more Priceline will have to take notice.

Alone, I cannot make a difference on behalf of the orphans. With your help though, we can #ShoutTogether until someone takes notice.

A version of this post first appeared on Our Moments Defined. See the original post for more details on how to #ShoutTogether.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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.

 

560
560
JOIN THE CONVERSATION

Trader Joe’s Employee’s Moment of Kindness Moves Special Needs Mom to Tears

1k
1k

One grocery store clerk’s simple act of kindness brought a special needs mom to tears.

Alisen Booth, from Brentwood, California, was at a Trader Joe’s near her home doing some shopping with her 5-year-old son Hank on Wednesday. Hank, who has autism, was having a rough day — Booth had picked him up early from school after he had a fall. Booth was trying to soothe him, look after his little brother and shop all at once. Hank was getting increasingly frustrated.

“Normally, when I’m out shopping, people look at me like, ‘Why isn’t your kid behaving? Why cant you handle your kid?'” Booth told The Mighty. “Nobody seems to think, ‘Maybe this kid is dealing with sensory overload. Maybe theres something else going on.'”

Finally, realizing there was too much going on and it was time to go, Booth got into the checkout line. Hank, still in overload, continued to take items from the shelves and the cart, until the Trader Joe’s cashier leaned down and started talking with him.

Cashier interacting with little boy.
Courtesy of Alisen Booth.

She engaged Hank and taught him how to scan the barcode on groceries, letting him check out his mother’s entire cart. She then gave him and his little brother some stickers as a present. Hank lit up immediately.

“She was very hands on and very caring,” Booth told The Mighty. “No one has ever done that before for us before. She didn’t even ask questions about Hank or his behavior, she just wanted to help. It blew me away.”

Boy and cashier.
Courtesy of Alisen Booth.

The small interaction completely charmed Hank and helped calm him down. Booth, touched by the gesture, snapped some photos, paid for her groceries and then, once in her car, started crying.

Later, she shared the story on Facebook. Someone who saw it put Booth in touch with the cashier, who turned out to have gone to high school with her husband. Booth was able to thank her some more.

Cashier and boy.
Courtesy of Alisen Booth.

Booth says for the rest of the day Hank was proud of himself and excited. He mentioned that he wants to be a Trader Joe’s cashier one day.

“I wish people would be more compassionate not just to people with special needs, but people in general. A smile, a hug, a touch, even a handshake can help anybody’s day. She made him feel like he had a purpose,” Booth told The Mighty. “It made his day, it really did.”

Cashier and boy.
Courtesy of Alisen Booth.
1k
1k
TOPICS
,
JOIN THE CONVERSATION

Autistic Teen's Booming Business Will Help Keep You Warm This Winter

4k
4k

Tucker Mashue is out to prove statistics wrong.

Nearly two-thirds of young adults on the autism spectrum are unemployed after the first two years of high school, according to the A.J. Drexel Autism Institute. But with his dad, Dennis, the 17-year-old is finding success in his “pro-autism” hat company, Tuck’s Tooques.

The father-son duo use the term “pro-autism” to mean “owned and operated by an autistic family.” Tucker is autistic and although he is currently balancing life as a high school student and entrepreneur, he dreams of being a pulmonologist someday. His dad is also on the spectrum.

“The business is really just a platform we developed for [Tucker] to develop skills to become an independent adult,” Dennis Mashue told The Mighty.

Tucker and Dennis Mashue hiking at Chippewa Nature Center, Midland, MI_photo courtesy of Michelle Delzer Photography
Tucker and Dennis Mashue hiking at Chippewa Nature Center, Midland, MI_photo courtesy of Michelle Delzer Photography

Frustrated with the public education system’s lack of post-secondary education focus for autistic students, the Mashues started discussing the idea of starting a company in 2012, but it wouldn’t officially be a registered entity until this January. Tuck’s Tooques sells the Himalayan-based touqe, or in this case “tooque.” (The extra ‘o’ was added to help Americans with pronunciation.) When they started looking at business models, a friend introduced them to tooques, and a light bulb went off. Outdoorsy people always need a good winter hat, and the business model for a hat company would allow them to distribute from anywhere and to travel freely. Another incentive for the Mashues was that the tassel hats would support Nepali stay-at-home artisans. Tooques seemed like a viable fit.

Tucker said one of his favorite parts of running a business with his dad is that it has helped the two become better friends. He said he has also learned new skills, like typing, shipping, setting up displays, collecting payments, paying bills, and customer service. The best part of running the business for Dennis: watching his son thrive in life.

Dennis Mashue, left, strings lights though their booth at Midland's Winter Village as son Tucker Mashue, 17, right, helps on Dec. 17. Together Dennis Mashue and his son Tucker Mashue, 17, run Tuck's Tooques, a pro-autism microbusiness, which helps Dennis teach Tucker entrepreneurship skills by selling handmade Nepalese winter hats.
Dennis Mashue, left, strings lights though their booth at Midland’s Winter Village as son Tucker Mashue, 17, right, helps on Dec. 17. Together Dennis Mashue and his son Tucker Mashue, 17, run Tuck’s Tooques, a pro-autism microbusiness, which helps Dennis teach Tucker entrepreneurship skills by selling handmade Nepalese winter hats. | ERIN KIRKLAND | [email protected]

 

Tuck’s Tooques has created a platform for Dennis and Tucker to bring new opportunities to the autism community. Through their OuterSelf Intiatives (OSI) project, the two have hosted parent workshops on changing autism health laws and available resources. OSI has initiated peer-to-peer programs in local schools, a nature day-camp program at the Chippewa Nature Center, and co-facilitated a national webinar to demonstrate how to develop peer-to-peer programs. They have also fostered mentor relationships between local college students and autism families, including fitness and bowling programs for autistic teens.

The longterm plan for Tuck’s Tooques is to create a lasting business and help change society’s approach to working with people with autism. In the future, the company plans to expand to become more than a seasonal business, and the Mashues also hope to employee other autistic adults. Their main focus for this year is promoting Tuck’s Tooques on Tour, a 6-month coast-to-coast promotional tour that will kickoff April 15. The primary goal of the tour will be to promote Tuck’s Tooques to retailers, as well as hosting speaking engagements to support “pro-autism” endeavors, online schooling for children on the spectrum, and to commemorate the 100th anniversary of the National Park System.

The DenTucky Adventure Boys photo courtesy of Rabi Adhikari Photography
The DenTucky Adventure Boys |photo courtesy of Rabi Adhikari Photography

Tuck’s Tooques already has made a number of accomplishments for the year. It was accepted by Central Michigan University’s Right Choice small business accelerator program. The company also made a noteworthy partnership when Lonnie Dupre, a world-class mountaineer and polar explorer, chose to outfit his Vertical Nepal expeditions in 2016 with Tuck’s Tooques.

Like any parent, Dennis wants his son to know that whatever he wants to do in life, whether that is to run the business, become a doctor or something else, he can achieve it.

“I wanted him to understand that while his learning style is different from his peers’, he can do it,” Dennis said. “I want to preserve his spirit and to push him to dream.”

Tucker and his dad, Dennis actively practice the 10 Superpowers of Optimism_photo courtesy of Michelle Delzer Photographer
Tucker and his dad, Dennis actively practice the 10 Superpowers of Optimism | photo courtesy of Michelle Delzer Photographer

Tucker hopes society will learn to be more accepting of people with different abilities. He also encourages other kids with autism to have confidence in themselves.

“Be proud that you have skills that most other kids don’t have,” he said. “Individuality is awesome.”

Tucker Mashue | photo courtesy of Pro Autism Endeavors
Tucker Mashue | photo courtesy of Pro Autism Endeavors

For more information about Tuck’s Tooques, check out its Facebook page and GoFundMe campaign.

4k
4k
TOPICS
, Video,
JOIN THE CONVERSATION

How I Feel When I Socialize as a Person With Autism

120
120

Hello everyone, Production Intern Andrew Levin here. I have a new video talking about what it feels like to socialize when you have autism. If you have autism or know someone with autism, feel free share your experiences in the comments.

If you have any ideas for videos you’d like to see, please contact me at [email protected]

120
120
TOPICS
, , Video
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.