Posts Tagged ‘ autism awareness month ’

Do You Know a “Kick-Ass Autism Dad”?

Monday, April 22nd, 2013

So many moms do such a fantastic job of helping fellow parents understand what it feels like to have a child with autism. It’s not quite as common to hear from the dads, is it? (Of course, there are great exceptions, like Autism Daddy.)

A writer I’ve worked with, whose 5-year-old son has what his doctor describes as a “severe” autism, alerted me to her husband’s new blog, which was created during a weekend he spent in a Milwaukee hotel. A “sane-cation,” he called it, because he was starting to feel like he was losing his mind: “My wife checked me in yesterday because she could see–even if I could not–that I needed to get away. To get away from the three hours of sleep a night. To get away from random screams that could be words but for some neural-gastrointestinal-immunological quirk. To get away from the hours of my son literally crawling the walls as I sit in impotence and despair. To get away from autism, even if only for two days and two nights.”

The getaway (and I use that term very loosely) did provide some clarity: “Autism culture–rightly–focuses on concentrating not on who your child could have been, but on who your child is: difference not deficiency. I believe in this culture, but I wasn’t ready for it… I needed to mourn, to release the anguish that comes whenever our visions of our lives create dissonance with the reality of our lives.”

And then he zeroed in on what he feels is the biggest difference between moms and dads whose children have autism: “[Men] cannot speak with one another. We cannot speak with our larger families. We feel racked by guilt as we look at our wives and just can’t pull it together, can’t be strong in the ways they need us to be. We self-destruct. Drink. Smoke. Cheat. Scream. Run. We need to mourn. We need to talk…”

Finally, he explained how he saw his new role: “Mourning is about transition. I’m transitioning now… I will move on. I will become a ‘Kick-Ass Autism Dad.’ For my autistic son, my neurotypical son, my wife, my larger family, I will move forward. For other autism dads, I will move forward, say the things that we shouldn’t say so that maybe one more dad can hear another voice and can mourn as he should, not as permission to live in despair, but as acknowledgement that things are different than we first imagined.”

For those of you who can relate, what’s your experience been? What resources are available to dads? Do they (or do you) utilize them? Who’s the “Kick-Ass Autism Dad” in your life?

 

Image: Happy father and son playing on sky background via Shutterstock.

 

Add a Comment
Back To GoodyBlog

A Solution for Kids With Autism

Monday, April 15th, 2013

When you have a child with autism, it’s sometimes the little things that make all the difference.That’s why Soft, a clothing brand that makes extra cozy outfits specifically for children with sensory sensitivity due to Autism, Sensory Processing Disorder, and other conditions, has created a limited edition Autism Awareness tee for kids. Designed in collaboration with a mom of a child with autism, the tee is made of soft organic cotton, non-irritating seams, and non-toxic dyes and inks, and has printed labels in place of the scratchy tags that make us all cringe. The adorable and incredibly soft (trust me, I’ve felt one!) shirts will be available for $25 through the end of the month on softclothing.net. You’ll also feel good knowing that 20% of the profits go to Soft’s network of Autism organizations, such as Autism Speaks and Autism Society of America.

Image via softclothing.net

Add a Comment
Back To GoodyBlog

What Parents of Kids Without Autism Can’t Understand

Thursday, April 11th, 2013

Because it’s Autism Awareness Month, I feel like it’s worth revisiting a story we posted last fall, about my friend’s sister. She has four children, ages 15, 13, 8, and 4. This woman’s 13-year-old son has a severe form of autism and a mood disorder with psychotic episodes; doctors have told his parents that their son is a very unusual case. As a result, life is extremely challenging for the entire family. Because their son is prone to frequent and uncontrollable outbursts, they’re all having a particularly difficult time in the condo complex where they moved not long ago for his mother’s job as a biotech scientist. Her heartbreaking Facebook post, which she allowed me to share, strikes me as the kind of thing every parent should read, particularly if he or she doesn’t have a child with autism–or any other disability or mental illness.

“I would like to say something to those people in our community who look at my husband, myself, and our disabled son in disgust or shout out your windows for us to just keep him quiet. He is a minor inconvenience to you. You get to go back to your lives, travel as you please, eat what you please, and go about your merry way. Imagine what it is like for us, constantly struggling to keep our son safe. Imagine what it is like for our other three children, whose friends’ parents won’t allow them to come over while our son is home, who are constantly told they can’t go places because it’s too difficult, and who often can’t make their needs heard above his yelling. But most of all, imagine what it is like for our son, whose level of anxiety is so great, whose suffering is so enormous, that he is driven to cry, driven to scream, driven to bang his head and bite his arms and legs. Have you ever in your life felt so much pain that you were driven to that? Be grateful for what you have, for being born with a normal functioning brain, and maybe you would consider being helpful instead. We could always use a home-cooked dinner, an offer to take one of our other children to a movie, or just a smile of support.”

Another reason I wanted to post this again is because right now, the story has a happy ending: Her son is on a new medication, one that has made a tremendous difference in his mood and behavior. As she explains, “I had almost given up when we found the right drug. I know it might not last forever, but at least we get to have a somewhat normal life for a while.”

Image via Shutterstock.

Add a Comment
Back To GoodyBlog

Twins Who Share a Diagnosis of Autism, 2 Years Later

Friday, April 5th, 2013

Two years ago, Ilene Krom wrote a GoodyBlog post about her twins and their shared autism diagnosis. Today, she is back to give an update on Rachel and Simon, now 6 years old, and what has changed for their family since she last wrote for us.

Twins Rachel and SimonIt has been two years since I’ve written something here, and so much has changed. And yet, so much has remained the same. My twins are still as different as night and day, even though they both have the same multiple diagnoses.

What hasn’t changed is my worry about their future, although that worry has changed shape. Two years ago, their “future” was entering kindergarten. I couldn’t bring myself to look too far ahead (I still can’t). I couldn’t imagine they would ever be ready for the experience that their older brother was already going through. But now, they are 6 years old. They are kindergarteners, and they’ve been handling the new change quite well.

All thanks to early intervention.

Like most things, the earlier you are aware of a problem, the better off you are. Thanks to specialized preschools, they are both on academic tracks. My daughter is in a general education classroom, alongside her typical peers. She is slowly learning to make friends and play with toys in appropriate ways. She has someone helping her get through her day and stay on task. And my son is right next door. He’s in a more specialized classroom where they can address his needs better, but he is still working towards a college-bound high school diploma, my original target for them both.

However, they do stick out a bit. My daughter does things “different” from her classmates. They’ve asked me directly why she is so “strange” (in the innocent way that kindergarteners ask questions). My son still looks like he doesn’t fit in, nor does he have a desire to make friends. This makes them both bullying targets. And every day, I read more stories on the Internet about children on the spectrum being bullied — by their classmates or so-called “friends,” by bus drivers, and even by teachers. I am very comfortable with our situation in elementary school, but what happens as they grow?

I don’t want my kids to conform. I want them to embrace their individuality, but I don’t want to see them chastised for being who they are. And, as they grow, the need to “fit in” will grow, too.

I can’t foresee what their future holds, but they will always know that they are loved, with all of their parents’ and older brother’s hearts. And hopefully they will have the inner strength to brush off anything negative that others may try to push onto them.

Read more from Ilene on her blog My Family’s Experience With Autism.

Add a Comment
Back To GoodyBlog

Top 10 Things to Do After Your Child’s Autism Diagnosis

Thursday, April 26th, 2012

autism awareness ribbonEditor’s Note: The tips in this post were provided by Autism Today (www.AutismToday.com), a resource website for autism that was founded by Karen Simmons, a mom of six kids (two with special needs).  The advice below is aimed at helping parents who are dealing with autism for the first time.

1. Start Local. Find a strong local support system and learn what is available in your area. Reach out to nearby cities if needed.

2. Utilize the Internet. Go to reliable websites with autism resources to educate yourself on programs, services, interventions, therapies, and supports.

3. Qualify Your Doctor. Locate a medical doctor who specializes in autism and has experience treating autism. A referral from other parents or a reputable autism organization is best.

4. Look Into Special Services. Check for related health services focused on speech and language, recreational therapy, occupational therapy, physical and behavioral therapy, etc.

5. Reach Out for Help. Make use of specific government agencies and public services that support autism, especially in the early intervention arena.

6. Educate Your Family. Teach relatives, friends, neighbors, and your child’s siblings and peers about autism and share what  your family is going through. Help them be more accepting and to understand the challenges.

7. Get Up to Speed. Stay current with the latest medical, biomedical, behavioral, and education services so you can pick and choose what is right for your child and your family.

8. Be Involved. Attend conferences focused on educational information and network with other individuals with autism, families, and professionals in the field. You may find lifelong alliances!

9. Take Frequent Breaks. Find and take advantage of  respite for yourselves.  As caregivers, you will need it.

10. Plan for the Future. Autism is a lifelong disorder and is not going to go away, but with proper interventions, it improves over time.  And as long as parents, caregivers, and other supporters have the best mindset, a child they can be guided toward leading a happy, fulfilling life.

More about autism on Parents.com

Image: A puzzle patterned ribbon symoblizing autism awareness via Shutterstock.

Add a Comment
Back To GoodyBlog

Keeping Kids With Autism Close

Tuesday, April 17th, 2012

For parents of children with autism, safety is a real concern. Nearly half of kids with autism try to wander away from a safe area, found a study by the Interactive Autism Network and Kennedy Krieger Institute. Of those children, more than one-third aren’t able to communicate who they are, where they live, or how to reach their parents and caregivers. Tragically, last year 10 children with autism drowned after wandering away.

But there are preventive steps you can take. These tips are courtesy of Autism File, a British magazine and web site.

  1. First, educate your child and explain as best you can what to do if he gets lost, and teach him his name, address, and phone number, hopefully until he can recite it from memory. (I’d add that this is probably not realistic for kids younger than at least 5.)
  2. Alert your neighbors that your child may be prone to leaving the house or yard, and ask them to direct your child back home and/or let you know if they ever see her on her own.
  3. Install wind chimes on your doors and windows. This is a great idea–easy enough to do, and works well to let you know that your child may be trying to leave.
  4. Talk to anyone who cares for your child about this issue, and discuss it with your local police department, too. Share helpful details about your child’s personality and tendencies.
  5. Consider a GPS tracking device for your child so that you’re able to quickly find him if he does get lost. (One we’ve heard good things about: Amber Alert GPS, where you attach the device to your child–such as around the wrist, ankle, even as a necklace–and then track him via your smartphone or computer.)

Image: Red garden swing hanging in garden via Shutterstock.

Add a Comment
Back To GoodyBlog

Is Autism Being Diagnosed Too Late?

Thursday, March 29th, 2012

That’s the question you can’t help but ask when you read the latest news from the Centers for Disease Control about the prevalence of autism. The alarming figure so many of us are familiar with–1 in 110 children have autism–is actually rising. The number is now 1 in 88. (And when you look at the number of boys who are found to have autism, it’s frighteningly higher: 1 in 54.)

The CDC’s data reports that the median (not average) age at which children are diagnosed with autism is 48 months. It’s 53 months for autism spectrum disorder/pervasive developmental disorder, and 75 months for Asperger disorder. Considering how greatly kids can benefit from early intervention, those ages are worrisome. Our friends at Easter Seals raise concerns: “We are completely missing the mark on early diagnosis, given that autism can be accurately identified at 24 months,” says national director of autism services Patricia Wright, Ph.D., MPH. “We have a lot of work to do in the area of early identification.”

To that end, Easter Seals’ Make the First Five Count initiative, with help from CVS Caremark, has launched a free online screening tool that gives all parents of children up to 5 years old access to Brookes Publishing’s Ages & Stages Questionnaires. This tool does not diagnose (that’s important to note), but it allows you to figure out whether your child is developing appropriately and help you pinpoint concerns you may want to discuss with your child’s doctor. It only takes between 10 and 20 minutes for you to answer the questionnaire and you’ll have results emailed to you within two weeks. Please share the link with other parents of the 5-and-under set, and we can help lower that too-old age of diagnosis.

Photo via Shutterstock.

Add a Comment
Back To GoodyBlog

Carly’s Voice, Loud and Clear

Tuesday, March 27th, 2012

After I met Margaret Ericsdottir, mom of Keli, the boy with nonverbal autism who inspired Kate Winslet’s new book The Golden Hat: Talking Back to Autism, I heard from another mother of an extraordinary child. Tammy Starr’s daughter is 17-year-old Carly Fleischmann, who’s pretty famous in the world of autism. Carly’s on Facebook (30,461 likes) and Twitter (22,932 followers), and has been on TV shows including “20/20” and “The Talk.” She’s also been featured on “Ellen” a few times; Ellen DeGeneres even recorded Carly’s bat mitzvah speech—thanks to some hardcore networking by Tammy—which was played for a blown-away crowd.

Now, everyone has the chance to get to know Carly and her family better. Her father’s book, Carly’s Voice: Breaking Through Autism, comes out today. Arthur Fleischmann’s breathtaking account of what it’s like to have a child with a disability isn’t an easy book to summarize, because Carly’s story—actually, Carly herself—is so layered. But here’s the short(ish) version: Around the time Carly was 1, her parents realized that she and her twin, Taryn, were progressing at different rates, moving in different directions. (The Fleischmanns’  son, Matthew, was about 6 at the time.) At age 2, Carly was diagnosed with autism. The next several years were, at times, excruciating: “This was not a life but a slow demise,” Arthur writes. Carly couldn’t speak; she had frequent tantrums; she’d repeatedly and violently bang her head; she’d make bleating sounds; she often couldn’t control her bladder. “Just let me get through one more night,” Arthur would lament. As he writes, “We had become masters of surviving Carly.”

And then when Carly was 10, the years of incredibly intense and devoted therapy offered a shocking reward: Carly typed a message to her therapists. To everyone’s astonishment, it turned out that the child who was believed to have very little going on in her brain, who was indeed considered mildly retarded, turned out to be not only smart but eloquent, witty, even sarcastic. I was struck when Arthur wrote, “I don’t think I will ever fully reconcile the dissonance between Carly’s intelligence and actions. It’s been six years that she’s been writing and with each epistle, I’m still left somewhat speechless myself.” The fact that Carly could communicate had one downside—it meant she’d understood everything that had been said in her presence. As she puts it, “You know how people talk behind people’s backs? Well, with me, they talk in front of my back.”

Arthur Fleischmann does not flinch from even the darkest moments in their journey, and there is one particularly horrible period when Carly lives away from home. At times he’s able to approach their situation with humor, like when he described a family party that only served to make them feel like outsiders: “It seemed like everything about us was just weird. Our Portuguese water dog hated to get wet, our cat was on antidepressants for ‘inappropriate urination,’ and attending family events was work, not pleasure.”

The book ends with Carly’s own words, and her explanation of what it feels like—emotionally and physically—to have autism is eye-opening. Quite frankly, I think this chapter should be required reading for our society, especially as we head into Autism Awareness Month. You’ll never think of someone with autism the same way again.

Add a Comment
Back To GoodyBlog