My Advice to Parents After an Autism Diagnosis


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.

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


“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.

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


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.”

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Via Instagram/n_nystrom
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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.

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


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.

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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.

The Adorable Moment Justin Bieber Surprised This Boy With Down Syndrome


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

What ‘Treat and Street’ Means for My Daughter Who Has Bipolar


When my daughter was officially diagnosed with bipolar disorder, I knew the chances she’d be hospitalized were high.

What I didn’t know was that she would be hospitalized five times by the age of 9. I believe at least three of these hospitalizations could have been prevented had she been given the care that she needed.

Her first hospitalization set the bar — my daughter was assigned a case manager who worked as a liaison between the doctor, the school and us. She really went out of her way to ensure my child received the best care possible. During this visit my daughter was inpatient (meaning she stayed overnight in the hospital) and then outpatient (care that doesn’t involved staying overnight) for a total of six weeks. Since the hospital was over 100 miles away, my daughter and I stayed at a motel during the weeks when she was in their day treatment program.

My daughter remained marginally stable for about seven months. Shortly before this time, my husband and I had to put her on government insurance due to some unforeseen circumstances. I knew this insurance would be subpar, but I never expected the standard to be as low as it was.

When her symptoms started getting bad again, it took three different trips to a local hospital’s emergency room before we were finally told by a county appointed evaluator that my child met the criteria for admission to a behavioral health hospital. My child was bound by restraints and sedated because she was so out of control she tried to injure several hospital staff members.

The crisis team member took one look at my child and decided she met the criteria for hospitalization without interviewing her.

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So my daughter had her second hospital stay only 80 miles away from our house. But, it did not include outpatient care. This means she was hospitalized, stabilized and then released with no sort of treatment plan. Without the transition of an outpatient program, we were left on our own.

This hospital stay became the first of four hospitals in a two-month period. It was a perfect example of “treat and street,” a term among the mental health community to describe when a hospital stabilizes the patient and then returns them to society with no real follow-up.

During her previous outpatient care, my daughter was able to work on her coping skills through group and individual sessions and was monitored by hospital staff to see if there were any significant changes in her behavior. Without these extra supports, she returned to our house and quickly returned to her old, unhealthy coping mechanisms. Her behaviors put our family and those in community at risk. On one occasion she was rehospitalized for taking off her seat belt in a moving vehicle in order to attack me.

We felt like we were on a merry-go-round. Each time was more traumatic than the last. On one occasion my child was escorted via ambulance from our house in restraints because she would not go quietly in our family car to the ER. She knew what was coming and wanted no part of it. I believe if my daughter received the level of care that she received at her first hospital stay that summer, that scene could have been prevented.

In my opinion, it’s irresponsible for a behavioral hospital or insurance to allow a patient under their care to be discharged without a comprehensive plan of care. All mental health patients, regardless of their economic status, should be provided the necessary skills and tools to help them function at their best possible level. For my daughter that means if she needs to be hospitalized again, she will also need an intensive day-treatment program preferably at the hospital she was admitted to. This will help her remain stable for longer periods of time.

Returning an unstable individual home without a solid after-care program may seem cost-effective at the time. But in the end it’s not just money that is lost — the patient’s dignity is lost as well.

Follow this journey on Raising a Drama Queen and on Facebook

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