Helping a special-needs child navigate the future

Mar 29, 2012

Glen Finland, author of "Next Stop: A Memoir," discusses how she's helped her special-needs, adult son become more independent.

On Parenting: 'Next Stop': Aging out of special-needs network and navigating the future

On Parenting: 'Next Stop' chronicles family's autism journey

Hi, everyone.  So glad you can join us today.  Well, first it was Blue Suede Shoes, then Blue Christmas and Blue Hawaii.  And now I guess I've seen everything: Elvis's Graceland--lighted up blue in Memphis --to kick off National Autism Awareness Month in April! What are you going to be doing to mark it? Let me hear from you!


And this just in:

The number of children diagnosed with autism spectrum disorder in the United States is soaring, with roughly 1 in 88 being diagnosed with this condition, according to a new study released this morning by the federal Centers for Disease Control and Prevention. This new figure reflects a 23 percent increase from data the public health agency released two years ago.

The study, based on 2008 data, shows that this developmental disorder, characterized typically by social and verbal delays, as well as repetitive behaviors, is five times more common among boys than girls -- with 1 in 54 boys identified -- and more common in white children than black and Hispanic children.

Of the 14 communities closely studied, rates were highest in Utah, and lowest in Alabama. Researchers also suggested that many new cases are identified first by teachers and school staff, as opposed to health care providers.

The study also shows more children are being diagnosed by age 3, an increase from 12 percent for children born in 1994 to 18 percent for children born in 2000.

“One thing the data tells us with certainty -- there are many children and families who need help,” said CDC Director Dr. Thomas Frieden. “We must continue to track autism spectrum disorders because this is the information communities need to guide improvements in services to help children.”

The CDC is holding a teleconference at noon today to discuss the findings in more detail.



As an autistic person learns to be more independent, how does an autistic person also learn to deal with situations where something goes wrong, i.e. the autistic person gets on the wrong train and becomes lost?

Just like all the rest of us -- by getting out there and trying again. The reality of letting go is one of the hardest things there is for parents  of a special-needs child. There will be many, many failures along the way, but I have always felt failure teaches my son something positive, especially if it comes with the chance of a do-over. Despite our persistent efforts to help our son manage his life, he will be the one to determine how he will live it after we are gone. He has earned the dignity of risk, and the decisions he will make for himself are the ones that will see him through. 

Every weekend I am my son's buddy, and we go to the movies and restaurants a lot together. I am going to start hiking with him and would like to expose him more to music. Any suggestions for other activities?

Have you looked into a Best Buddies chapter at your local university? David used to meet monthly with a college student from Georgetown. They would go for a run on the National Mall or grab a milkshake together. What he seemed to like most was hanging around people his own age for a change. But I applaud you for the hiking you're doing. Exercise is a great stress reliever -- for both of you!

How have you been able to give your son some financial independence? I have a disabled sister. My parents struggle with this because she wants to manage her own money, but she always spends down the money they give her each week (on top of SSI) more quickly than the time allotted. She has real needs and not much income, but she also spends it on somewhat frivolous indulgences and then never has any when emergencies pop up. Any ideas?

What an important question! The simple answer is: make sure your sister carries only one dollar bills in her wallet instead of larger ones to protect her from the unscrupulous types who might shortchange her at the cash register. Yeah,  this really happens. And we learned the hard way that a debit card is not the way to go either. Instead, we give our son a set amount of cash at the end of every week for spending money and deposit the rest of his paycheck in his savings account. We have him keep a daily log with receipts showing every penny he spends, no matter how little it is. Every single day. This seems to help him realize where his money has gone. Repetition is the key here.  Oh, and don't forget to clean out her coat pockets daily and check under the bed, inside the washer/dryer, etc.,  for all that loose change that gets squirreled away in unexpected places.  It really mounts up!

What job does David currently have and is he happy doing it?

He has two jobs. For the last two years David has worked in supported employment on a clean-up crew in public parks. And now that it's baseball season, he's heading into his job as an usher at Nationals Park in DC for the fourth year in a row.  That job offer came after my story Doors Opening was published in the Post Magazine in 2009 on Mother's Day. I mentioned how David swings an imaginary bat whenever he's really happy and the Nats organization picked up on that. One of the supervisors for Guest Services said, "I wanna see the kid swing that bat."  We love us some Nats in this house!

I have two children, ages 19 and 21, who are both on the upper end of the spectrum. My 21-year-old has gone through training to be a dog groomer, but now we cannot get her to look for a job. She is resistant to all help and will not call about a position, even with a script to read to start her off. She is amazing with animals and says this is what she wants to do but doesn't pursue the job postings. What do I do to help her?

I like the idea of a script for her to follow. We do a lot of role-playing at our house too before important events like a job interview. How about taking your daughter to a busy Pet Smart on Saturday mornings to remind her how much she loves being around animals again? Let her chat with the groomers and pet handlers in a casual manner. (A call in advance would be wise.) But stay out of the picture and let her do the talking.  Make sure the manager sees how well she relates to the dogs. It's all about boosting her self-confidence, isn't it?

Dear Glen, our son is only 4 and has an undiagnosed neurodevelopmental disorder that causes him global developmental delay and a seizure disorder. He is just now starting to walk a little, to talk a little, but we have no idea what the future holds for him. Last night we went to a seminar on special-needs trusts. We learned a lot, but my largest fear is that we may not be around when my son reaches adulthood. I am plagued by a sense of dread when I try to imagine who will look out for him, administer his trust and love him like we do. It is so overwhelming that I am more likely to just bury my head in the sand and focus only on today (which is quite full as it is with five therapies a week, more doctors and testing than I can even recount). How can I get past this and really start planning for his future in a sensible and realistic way?

Pat yourself on the back because You have already begun.  A special needs trust which can include limited guardianship is one of the most valuable tools any parent of a special needs child has in his or her toolbox. Because this is the monster under all of our beds: who will be there for my child when I am no longer around? Who will offer a chaste and loving touch? And if there is no one, will there be safe shelter for him somewhere? So get busy now. A special needs trust is a legal document that will help protect your child from a predator's grasp and also make sure he receives the civil rights he is entitled to. Gird yourself--establishing this circle of support is a long process. It's nothing short of imagining your child's entire future.

This discussion isn't limited to autistic kids, right? How about learning disabled kids or kids who have Asperger's Syndrome. Becoming independent, e.g., finding an apartment, a job, handling financial transactions with banks and other organizations isn't easy. I've been in that position for over 30 years, and sometimes I still have trouble navigating rocky shoals. Thank goodness I have a great support network to help me out, and I recommend that any autisitc kid also find a good support system to help. Don't be afraid to ask for help, and your condition is not a stigma but an opportunity to reach out to others.

Welcome and well said!  "Thank goodness I have a great support network to help me out, and I recommend that any autisitc kid also find a good support system to help. Don't be afraid to ask for help, and your condition is not a stigma but an opportunity to reach out to others."

So what are you doing to mark World Autism Awareness Day on Monday, April 2nd?

People often ask me how has letting go of my autistic adult son differed from letting go of his two neurotypical big brothers.  Well, all parenting is challenging but watching our grown kids step out of the nest is one of the hardest parts. But the challenges are different for parents of a young adult with autism.  When David's big brothers left home they widened their circle of support with new friends, business associates, and social groups. When David leaves, his circle of support will shrink. But still, he's working hard at his job to save up money for his own apartment. When that day comes, will we let him go? You bet we will, and it will be hard.  Roots and wings, folks.

Today's the pub date for my book Next Stop. The takeaway is that these kids are growing up and families with autistic loved ones need to work for change in supported employment, housing, and health insurance regs.  We need to turn our frustration into action and let our representatives know how we feel because our numbers are growing larger and larger.

You mentioned Best Buddies. I am pretty far out of high school or college but always admired that organization. Can one be a Best Buddy as an adult? Or are there other volunteer opportunities with them for non-students?

What a great question! I don't know the answer but it is sure worth a phone call to them. I would also recommend contacting your local chapter of Special Olympics. They can always use an extra helping hand.

If you had five minutes with President Obama to tell him what needs to be done for differently-able adults, what would you say?

I love this question. My answer: We need to stop seeing autistic people as targets for pity and focus on the best ways to welcome them into our communities with jobs and housing supports so they can succeed on their own...with the civil right they are entitled to.  And here's an example of what we need to do:  Didlake, Inc. in Virginia--a job support service for people with intellectual disabilties-- is hoping to form a partnership with VCU's Autism Center for Excellence to develop a model of support for adults with ASD. Its goal is to take all the best practices they've tried and combine them with a robust staff and community training on how to support an adult with ASD.

Just a note to you and those parents who are writing in to the discussion: Thank you for the hard work you are doing now to help your children down the road. I have seen first-hand what happens when parents refuse to think about these questions, and it's not pretty for the adults with special needs, their siblings and others around them.

You're right. I can't stress early action on that front enough.

Are there any colleges and universities that offer academic programs for special needs students that also offer specific day-to-day assistance for the students on campus as well as working on social and life skills?

The answer is yes! The best resource out there for state-by-state info is Sign up for the daily blog to keep abreast of the variety of innovative programs offered on the college level.   And is a social network that connects parents of kids with autism with 30,000 autism-friendly service providers around the country.  Look 'em up!

As a mother of two girls with Spina Bifida, I am very worried about bullying when they get to school. (My eldest begins kindergarten in the fall.) Do you have any ideas for preparing them for kids who are not as accepting as her current daycare buddies?

Special needs kids are often targets of bullying, it's true. And your kindergartener may not be able to tell "good" from "bad." Keep track of who your child befriends and vet them for her. Yes. It takes an enormous amount of maturity and watchfulness to parent a special needs child.

How accurate is an autism diagnosis? Is there a possibility that the patient is, instead, dealing with an anxiety or phobia created by a social-environmental abnormality, such as being kept in state of constant stress by family disfunctional behaviors or even brutally bullied?

Wow. That is way beyond my ability to answer. I defer to those of you out there in the medical community who are better equipped to take this one on.

Is there a list of major corporations who help autistic and other special-needs adults? I heard that Comcast-NBC Universal has agreed to hire 1,000 veterans over the next three years which is great news for our well-deserved military. Do they or other corporations have a policy to hire differently-abled people as well?

Again, do head over to the site. You'll find what you're looking for there!

The time has flown by and I have enjoyed chatting with you all, hearing what's on your mind.  Sorry I could not get to everyone's questions, but keep up the good fight.

And know you're not alone.  All best, my friends!


I've been in a situation a couple times where I have been introduced to colleagues' children who appear to have Asperger's or who are somewhere on the autism spectrum maybe. Their interactions seem "strange" to me: sullen appearance, no eye contact, don't respond when talked to. These are colleagues I know well enough to spend social time with outside of work, but they didn't mention anything about their kids maybe having special needs. I'm uncomfortable in these situations. Sometimes I want to ask, "I notice x doesn't seem very comfortable. Is there something I can do to make him more comfortable?" Would that be okay or the wrong thing to do?

One last comment to this question: There can never be enough kindness in the world. Ask your thoughtful question and see what happens.

In This Chat
Glen Finland
Glen Finland, author of "Next Stop: A Memoir," discusses the challenges she's faced -- and overcome -- as the parent to a special-needs adult. The book was inspired by her 2009 Post Magazine story "Doors Opening," where she described what it was like to teach her autistic son, David, how to ride Metro. Finland is a former TV news reporter and author of "Changing Places: A Kid’s View of Shelter Living" and "The Sweetgrass Code."
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