3 Things We Need From Parents as Siblings of Kids With Special Needs

5k
5k

Today my sister, Zoya, and I watched Polly and Evie, our two little sisters with disabilities, while my mom went out for a haircut. Since it’s summer, we do watch our sisters more often, but we don’t really mind. Usually, we pop in a movie, go outside or just have fun playing Barbies together.

But today, Evie threw a tantrum, which stressed us out and pushed Polly’s attention more out of the way. After Mom came home, we talked about what happened and how everybody was. It warmed my heart when she asked me if I was OK! I wasn’t the one throwing a tantrum or having trouble communicating. But my mom took a minute to check in with me.

Little things like that help remind me that my parents do care about me and don’t forget about their other kids. In light of my experience today and others like it, I came up with a list of three things parents can do to make sure their kids without special needs feel just as important as their siblings with special needs.

1. Take time to do fun stuff.

This may be an “ah-ha” moment or just a good reminder, but it’s very important to take one-on-one time to do things with your child. By planning fun activities to do with your kid, it makes them feel like you care about their happiness and you aren’t forgetting they are in tough boat, too. I understand parents of kids with special needs have a lot of obstacles and struggles, but sometimes the kids who are “typical” share some of those struggles. So plan a day of shopping, see a movie or even just talk! Just make sure it’s one-on-one and something you both want to do.

2. Ask us simple questions that might have slipped your mind otherwise.

I appreciate it when my family is having a hard day and my parents still take the time to ask me how my day at school was. It shows you not only care about big struggles with your kids with special needs, but you also care about your “typical” kid’s homework or what they’re planning to do on the weekend. This is a simple way to show you care.

3. Ask us our opinions on things regarding your kid with special needs.

By asking us our opinions, it makes us feel like we are in the loop and we get to know about things that have been taking up a lot of our parent’s energy and time. We better understand it instead of being outside of it all and feeling neglected. Even if we don’t really get a say, it’s nice to feel like our opinions are being heard.

I hope this helped! Remember that siblings of kids with special needs are usually pretty flexible and understanding. Yes, we all have our moments, but we love our family members with disabilities as much as our parents do, just maybe in a different way.

Elaina Marchenko the mighty.2-001

Follow this journey on GillianMarchenko.com.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

5k
5k

RELATED VIDEOS

JOIN THE CONVERSATION

My Advice to Parents After an Autism Diagnosis

863
863

Parents occasionally write to tell me their child was just diagnosed with autism, and in searching the Web for insights they found my blog. They often express fear and sometimes sorrow, and they ask if I have any advice.

Since this has happened more than a few times, I thought I’d compile some of the thoughts I’ve shared with these parents over the past few years into one list, in no particular order:

1. An autism diagnosis is just a label; nothing about your child has changed. The upside of the diagnosis, on the other hand, is that it allows your child to get critical services and support.

2. It might feel unfair your child was diagnosed with autism at such a young age. But for our family, early intervention was critical — so I believe the earlier, the better.

3. Try not to panic or feel like you have to fix things right away. This is a lifelong journey, and progress will happen over time just as it does for any child.

4. Though some people feel ashamed of their child’s autism, this is one of the most damaging things you can do to yourself and your child. There is no reason to be ashamed: your child has a different neurology, nothing more, nothing less.

5. Although it’s not uncommon to want to find someone to blame, don’t do it. No one is to blame. In particular, don’t blame your partner. You need to support one another now more than ever.

6. Autism is diagnosed by a cluster of similar characteristics, but no two people with autism are alike. Evidence-based therapies involve working on specific challenges, not eradicating autism. Try to move beyond the label and focus on your child’s unique challenges and, more importantly, strengths.

7. Beware of anyone offering a “cure” or “recovery”; there is no scientific basis for any of these so-called remedies, and some of them are downright dangerous. They are offered by people who — as kind, supportive and legitimate as they may seem — are either grossly misinformed or simply want your money.

8. Don’t buy into the myth that people with autism are “locked away” or otherwise disconnected. Outward appearances can be deceptive; if you truly want to get to know your child, you’ll find they’re just as present as any other child. Seek out their interests and make them part of your play routine.

9. Embrace — don’t extinguish — your child’s obsessions. They provide a great way to connect with what interests your child.

10. Presume competence. Your child will amaze you with their abilities if you don’t assume they’re incompetent. In fact, nudge them (with love and patience) — just as you would any child — to do challenging things, things that may push their limits. This is how all people grow regardless of their neurology.

11. Embrace the atypical. We like to say that we value diversity and individuality, but when it comes right down to it, there’s an overwhelming parental urge to make sure your child “fits in.” Over time, you’ll come to understand that fitting in is a lot less important than being happy.

12. Some friends and family will evaporate. There’s no single reason why this happens, but some of the people you think you can rely on most simply won’t be there. Try not to waste your time and energy fretting over it. New, wonderful people will enter your lives, and some of the old ones may eventually get with the program as well.

13. Try to get to know teens and adults who have autism. Read their blogs and books, watch their videos, connect with them in person. They will help you gain insights you cannot possibly imagine now.

14. Parenting will not be what you imagined; it will be harder than you’d hoped. Try to let go of your expectations and live in the present. In time you may come to find great purpose in this experience. I personally cannot imagine my life, or my son, without autism.

Most of all, remember your love and acceptance for your child is what matters most.

Follow this journey on ASD Dad.

863
863
TOPICS
JOIN THE CONVERSATION

This ‘Frozen’ Star Designed a T-Shirt to Help Prevent Teenage Suicide

266
266

“Frozen” star Kristen Bell designed a T-shirt to show teenagers dealing with depression and suicidal thoughts they’re not alone.

The shirts are selling for $24.99 each, and all proceeds go to the Society for the Prevention of Teen Suicide (SPTS). In less than a week, more than 100 of the 500 total limited-edition shirts have been sold.

SPTS works to reduce the number of youth suicides and attempted suicides by offering training materials and programs for educators, helping them identify risk factors and properly intervene. Its website also has resources and information for parents and teens.

“.@SPTSUSA reduces the # of teen suicides through educational training programs. they’ve trained over 80k teachers to date. bravo,” Bell tweeted.

Bravo to you, Kristen! You can buy her “You Are Not Alone” T-shirt here.

266
266
TOPICS
JOIN THE CONVERSATION

This Mental Illness Campaign Is Teaching People How to Not Be a D–k

209
209

We all know those friends  — the ones who think they know everything. The ones who will give unwarranted advice, even about topics they know nothing about.

That friend can come off as kind of a jerk sometimes — especially if you’re trying to talk about serious issues like mental illness. A new social media campaign, “Don’t Be A Dick,” encourages college students to be a good friend, not that friend. The campaign, launched Tuesday, calls on everyone to educate themselves about mental illness so you’re prepared if a friend reaches out.

One in five young adults have a diagnosable mental illness, according to the National Alliance on Mental Illness. The Don’t Be a Dick campaign wants to show the four out of five people how they can help.

Created by summer interns at MRY, a creative and technology agency, the campaign includes funny videos featuring different personas and a pledge. The clips depict different friend types, such as the friend who only cares about going out and the friend who relates everything to their own life, and then give advice on how to not be that friend.

But through all the humor, the campaign has a serious message: If a friend approaches you about a mental health problem, there are ways you can help.

If you’re ready, you can take the pledge yourself and pinky swear you’ll be there for the one in five college students who might need your help. To participate, share your pinky swear on social media with the hashtag #DontBeADickPic.

“I’m going to make this promise that next time my friend needs help, I’m going to listen and hopefully be able to help them,” Morgan Klovens, a MRY intern who worked on the project told The Mighty. “It’s a pledge to take mental health more seriously.”

IMG_2213 copy
Via Instagram/n_nystrom
IMG_2212 copy
Via Instagram/rahowar

 

According to Klovens, the ultimate goal of this campaign is to reduce the number of students dropping out of college due to mental illness.

“People aren’t prepared to talk about it and they need to be because it’s becoming a huge issue,” Klovens said. “We should be prepared to help our friends get help.”

See the campaign’s tips below.

209
209
TOPICS
JOIN THE CONVERSATION

I’m Sad She Won’t Have a First Day of School, but These Words Helped Me

906
906

Back-to-school season is nearing. Supermarket aisles are filled with lunch boxes, and the department store flyers advertise backpacks and shoe sales. The world assumes if your children are school-aged, they will need new sneakers for running and playing and backpacks for carrying books and lunches. The thing is, when you child is paralyzed, you don’t have to buy sneakers. And if your child eats with a feeding tube, you have no need for lunch boxes.

Our youngest child, Cal, would have enrolled in kindergarten this fall, but at the age of two, she was diagnosed with late infantile onset metachromatic leukodystrophy, a degenerative neurological disorder that has robbed her of the ability to walk, talk, swallow, feed herself and see. Cal is not expected to live beyond the age of 6.

On the first day of school this fall, she will be at home in our den where she is cared for by hospice nurses and my husband and me.

In my head, I can conjure up the first day of school that will never be.

There would be a sign at the school’s main entrance for kindergarten check-in. One by one, anxious parents would bring the children into the massive building. Aides and the other staff would introduce themselves and make sure none of the children were lost or scared. Some of the parents might linger in playground and marvel at the beautiful building with its open landscaping and the massive mosaic of an owl, inspiring children to learn and soar in the pursuit of knowledge.

Children would wear outfits specially chosen for this important day. There would be girls wearing perfectly woven braids and long, coltish legs. The boys would wear shorts and the bright-colored socks and sneakers that all the athletes wear right now.

Cal would be wearing leggings or maybe shorts and sneakers, since she was never a frilly, dressy girl. I know she would want to run after her older brother who is one of the big kids in sixth grade. Cal’s curly hair would be wild and uncombed since before she got sick, she would never sit still long enough for me to brush her hair.

How clear this vision of a thing that will never be is. How well I recalled just assuming all these things would happen when I became a mother for the third time.

When the official letter from the district arrived in the mail wanting to know if my daughter would be enrolling in kindergarten, I didn’t know if I should just ignore it or call the district to explain why our daughter wasn’t going to school. I explained how we would only require home-based services. The woman was kind and thorough, though, she too was at a loss for words. She couldn’t help but ask, “Are you sure Cal is too sick to go to school?” I explained the risk of respiratory infection was too great and Cal’s world had to be our home and her nurses.

It makes me sad Cal can’t go to school and learn.

The paradox in all of this is that this child who isn’t going to school has taught our family and our community so very much. Cal has given my older children and our entire community a powerful lesson in how to live with a terminal illness. Even as the disease takes more and more from Cal every day, Cal smiles when the children speak to her and sings along during the spring concert. Cal never complains or gets angry. If she is in pain, she cries out, but she’s incapable of anger, cruelty or mean-spiritedness.

Cal’s illness requires many people to work very hard to take care of her. But the truth of the matter is that Cal gives everyone much more than she asks of us. The children at the school have written a book about Cal and neurological diseases. Teachers and students at the school — where Cal will never be a student — have raised $37,000 to support children’s hospice programs and research in pediatric neurology.

One day, when I told the guidance counselor at the school how much it hurt that Cal would never get to go to school there, she corrected me. “Cal is very much a part of our school,” she said. How could I have not realized this before? Cal had touched the lives of so many children, and they would never forget her. She had been a part of the school all along.

Maria Kefalas the mighty.1-001

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

906
906
TOPICS
JOIN THE CONVERSATION

The Adorable Moment Justin Bieber Surprised This Boy With Down Syndrome

419
419

This is the sweetest Justin Bieber news we’ve heard in a while.

As part of an episode of the reality TV show “Knock Knock Live,” where unsuspecting people across the country get visits from celebrities, Bieber showed up at a church in Lynwood, California, to pay a surprise visit to Nikea, a rapper, and his son Noah, who has Down syndrome.

Noah loves to rap with his dad, so during his visit, Bieber asked if he could see the two perform together. The father and son got on stage and performed what might be the most adorable rap collaboration of all time.

“For me, just being able to witness that, it almost brought tears to my eyes,” Bieber says in the video clip below.

Watch Bieber surprise Noah and his family in the sneak peek below — and see the incredibly sweet rap father-son rap at :38.

h/t Just Jared

419
419
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.