Thrive On the Autism Spectrum

Residential Treatment Programs

Parents can really struggle when their local schools aren't meeting the behavioral or emotional needs of their child. Sometimes the only choice is to consider sending teens to a boarding school, a Residential Treatment program or a transitional program. It's not easy to find just the right fit, and it can be a heart breaking decision for parents. That's why I was so pleased to meet Jeanne Hughes, R.N., an Educational consultant and Member of the IECA, Independent Educational Consultant Association. Jeanne works with parents throughout the entire school placement process, to ensure the students get into the right programs, and the family’s needs are supported.

Patricia Robinson: Jeanne, how do you typically help parents in the process of finding a school or program?

Jeanne Hughes: The first step in helping parents find a school or treatment program is to meet with them and learn about their child's strengths and interests as well as what issues are of concern to the parents. I ask parents to describe "the perfect" school for their child. I want to know what short term and long term goals the parents have for their student. With the parents' consent, I speak with the child's therapist, teacher(s), pediatrician, and other pertinent professionals who have worked with the student. And then, separately, I meet with the student to learn about their interests and answer their questions. All of this lays the groundwork for me to begin a school search. I try to match as many of the parents' "perfect school criteria" as possible. I speak directly with prospective schools about this student. Finally, I present the parents with several viable school options for their student.

My job is to streamline the school search process for parents during this very difficult time when they are likely feeling overwhelmed. By eliminating schools which would not be appropriate for their student, I can save parents time, money, energy, and exasperation by leading them to a couple of good fits, versus striking out on their own to explore schools. I have visited hundreds of schools and programs, and share first hand knowledge of schools with parents. I want to take them by the hand and lead them through this process in a mindful, sensitive, effective manner.

PR: What are the different types of programs available?

JH: The world of therapeutic schools and programs has changed dramatically over the last 15 years. The best programs continue to evolve, implementing new curriculum based upon the latest research and best practices. The continuum of therapeutic programs ranges from short term wilderness programs, therapeutic boarding schools, residential treatment programs, substance abuse treatment programs, programs specializing in eating disorders, attachment issues. Some schools are "hybrid," - -- combining elements of an RTC / therapeutic boarding school . There are programs for elementary school children, teens, young adults, and adults. There are also many boarding schools which can accommodate a student with LD issues, severe dyslexia, ADHD, poor organizational skills, or who simply feels uncomfortable in his large, local day school. Some boarding schools even offer summer programs, where a student can take a few academic classes in the am, and enjoy extracurricular, fun activities in the afternoon.

PR: What about transitional programs?

JH: The word "transition" has two meanings in the educational consulting world. One type of transition school option is for the student who has successfully completed a therapeutic boarding school or residential treatment program, and is now ready to "transition" to a new setting. Because the shift from a totally structured program to a traditional, mainstream school is quite dramatic, often a transitional school is recommended. It is effectively a "step-down" school where there is still a lot of structure (at least initially), yet it can help the student continue to practice managing his unstructured time effectively without falling back into his old patterns of behavior.

Another type of transition program refers to those programs for young adults, ages 18-25. These are programs which help students with a variety of issues, such as ADHD, immaturity, Asperger's, or recovering substance abuse students, learn how to function as an adult. Life Skills, including getting and keeping a job, living with a roommate in an apartment., planning and shopping for meals, food preparation, managing their finances, attending college, healthy relationships, etc. are done under various levels of supervision.  Students meets several times a week with counselors.  Vocational skills are taught at some programs.

PR: How should parents get started?

JH: First, be aware that therapeutic schools cost approximately $7000 per month, with RTC's often costing $10,000 per month.  On average, plan to have your child enrolled 12-18 months.  Most insurance companies do not cover these costs, except to reimburse parents for the direct cost of the child's therapist or psychiatrist.  If your child has an IEP, he or she may be eligible for some funding through their school district and/ or AB3632 (County Mental Health).  If both parents are ready and able to make a commitment to an out-of-home placement, then we can meet and get started.  My contract placement fee is $5000, all inclusive.

PR: Jeanne, thank you so much for talking with me about this topic. I know it can be really overwhelming for parents faced with such a tough choice, and your knowledge can be so useful for them.

Treatment Options: Reading Programs

Kids with special needs like ADHD, ASDs and learning differences can frequently benefit from specialized tutoring and academic programs. But there are so many options, it’s difficult to choose what’s appropriate. And for adults, it can feel too late to get the help they need.

Today, I’m interviewing Theresa Rezentes, of Dyslexia Connections. Theresa is certified in both Slingerland Reading methods and  Lindamood-Bell methods. She works in schools as well as individual students in Alameda and Western Contra Costa County.

P. R. What are the signs that a child could benefit from working with a reading program?

T. R. As a reading therapist, I tutor kids who read below grade level despite an average to above average intelligence and who exhibit signs of letter direction confusion (b and d or b and p are most common), or who transpose letters (change their order) as exhibited in writing or oral reading.  Also, the child avoids reading for pleasure despite many encouragements.

P. R. What are these different reading programs?

T. R. As these children are three dimensional, hands-on learners, many need to write letters and words in the air with their whole arm to give them meaning.  The above confusions can be so distracting that only by writing the letters in the air while saying them and pronouncing them immediately following give them the scaffolding needed to make sense of words and reading.  This physical relationship is what is needed to permanently bypass the confusions that many children see if they have trouble reading.  Also, both the Slingerland and Lindamood-Bell Methods focus on auditory processing weaknesses which the majority (80%) of these students possess.

P. R. Can this be helpful for adults? 

T. R. Yes, it is but will take longer to make progress. I compare it to learning Spanish as an adult vs. as a child. The reason is that the neuropathways are more solidified with adults compared to children.  Therefore, the letter confusions are more permanent and will take longer to correct.  However, with therapy of three or more hours a week, progress can be made.  The bottom line is that it takes a true commitment of the adult.

P. R. How does this differ from what's taught in schools? 

T. R. For years, the Slingerland Institute had trained teachers using this method with hopes it would reach the schools.  Unfortunately, because most principals are not aware of these methods they are not supported by administrators and many of these children end up in Special Education with an IEP. The Slingerland Method is available in many Catholic Schools in the Oakland Diocese.  It has widespread support of the diocese and I treat children who attend Catholic schools.
 
The Lindamood Bell method is available in only two schools in Oakland.  The Susan Barton Method is available in the Pleasanton USD and San Ramon USD.  Both Lindamood Bell and Susan Barton require one on one tutoring and most schools cannot afford to have one employee work with one student several hours a week.  It is really through parental efforts and pressure that enable these methods to be available in the public schools, typically through a lawsuit settlement, or through private tutors certified in these areas.  I am certified in both Lindamood-Bell and Slingerland.

P. R. Thanks Theresa.

For those interested in learning more, please visit Dyslexia Connections.

Floortime Conference Online

Several years ago, I took the online course in Dr Stanley Greenspan’s Floortime. Floortime is a flexible, useful approach for parents and professionals to use with autistic children, that I’ve discussed in several previous posts. Sadly, Dr Greenspan died recently, but the 10 week online course is still going to be available in March through video tapes of his presentations. This program is suitable for both parents and professionals. There are also programs on related topics such as managing meltdowns, and learning disabilities. For more info, visit the Floortime website.

Book Review: The Autism Mom’s Survival Guide

A while back, someone sent me a copy of Susan Senator’s The Autism Mom’s Survival Guide. Susan Senator is a gifted writer, with a blog as well as an earlier book about raising her autistic son. Susan Senator writes with a personal, honest voice that feels like you’re talking with a close friend over a cup of tea.

Although I read the book immediately, and keep recommending it to friends and clients, somehow I’ve never reviewed it for my blog. I thought now would be a good time to rectify that lapse. The Autism Mom’s Survival Guide is really all about taking care of yourself at the same time you’re taking care of your special needs child, as well as the rest of your family. Senator writes from her own perspective, as well as compiling the advice of other autism parents. For parents who may feel like they’re all alone, judged by others and not measuring up, this voice from a community of others in the same situation can be a valuable support.

My favorite part of the book comes when Senator writes in her own voice, as the mother of a now grown autistic child. Her compassion as she looks back on her own young self, raising her small child, was touching, and just what every young mother needs to hear. This book is a gift for all parents of special needs kids, a book to pull out when you feel like no one understands, or that you’re all alone.

Divorce and Autism: An Ongoing Discussion

I think every family wants what's best for their autistic child, and one of their biggest worries is divorce. It's not surprising, since popular culture so often states that 80% of families with autistic children get divorced. Thankfully, that statistic seems to be more widespread than valid. I’ve published a few posts on the theme of divorce statistics among families with autistic children. You can find more details about divorce rates in the Kennedy Krieger study and the Easter Seals survey.

Fortunately, it’s an intriguing issue, and researchers continue to investigate the question. Recently, The Journal of Family Psychology published a study by Sigan Hartley, in which she looked at 406 families of autistic children, as well as an equal number of parents of typical children. The study found that divorce rates were equal up to the child's age of eight, after which time the parents of autistic children were more likely to divorce. The study found a 23% divorce rate for the autistic families, compared to 14% for the typical families, still a far cry from the often reported 80% rate. Hartley suggests that the difference in rate found between this study and the Kennedy Krieger study was due to the age differences of the children. The Kennedy Kreiger study, which found equal divorces rates regardless of the presence of autistic children, looked at children under 17, while Hartley’s study included children into middle age.

Clearly, this is not a simple question, and more research will give us more details. But, the good news is that most families do manage to stay intact, regardless of their children's diagnoses.

Coping with the Holidays: Advice for Parents of Kids on the Autism Spectrum

Over the years I’ve posted several articles about how individuals and families can cope with the holidays. And, of course, the same issues come up every year. Families travel, visit, have massive, loud get-togethers. Unwanted advice, comparisons, judgments are always there, maybe under the surface, maybe right in your face.

In view of that fact, I want to repeat the same thing I said last year. You know your child. Just because your child is acting up, or not matching the achievements of cousins, or won’t eat the special dinner Grandma made, does not mean that you’re not great parents. And it doesn’t mean that you don’t have a wonderful kid, with his own special gift and talents. Please take this holiday season to appreciate the child you have, and to trust yourself as a good parent.

And here’s last year’s article, in case you didn’t read it then.

The holidays are coming up and for a lot of people that means getting together with extended family and relatives you haven’t seen in a while. This can be a great chance to connect, feel supported, even show off a bit with all the progress your child has made.

But it can also mean unwanted advice. Your parents, your sister-in-law, your best friend from high school probably mean nothing but the best for you and your family. But they also may not have a special needs child and they may not understand what it is that your family is going through, or what your child needs.

So often I’ve heard the same story from clients. A well-meaning relative says something like, “If only you’d do _________, your kid wouldn’t do _______.” or “Trust me, your kid just needs more __________, and he wouldn’t be so _____________.” You can probably fill in the blanks, there’s a lot of advice out there.

The fact is, and I’ve said it before, some kids are just tougher to parent than others. Your nieces and nephews may just be incredibly easy-going children. It doesn’t mean that you are not also a good parent. Your child may just be wired differently, temperamentally more sensitive,  more strong-willed, or more emotional.

I’ve worked with so many different kids over the years. The truth is, some of them are so easy and low key, they practically parent themselves. Other kids are so difficult, it’s hard to manage them for just a brief while, much less an entire holiday vacation. Add in some travel time, late nights, too much stimulation, and it’s not surprising that things get out of hand.

So this holiday season, I’m asking you to trust yourself and the parenting skills you’ve developed by taking care of your child for all this time. Listen to the advice politely if you want to, but don’t think that any other parent is more capable than you are. Your child is lucky to have you as a parent.

Book Review: A Regular Guy

The Autism Spectrum is so broad, the gifts and difficulties so varied, that people often tell me about how they feel alone, that their experiences are different than others, and no one understands what they’re going through. And, for those raising a child on the spectrum, there are ongoing challenges that can feel very isolating for parents as well as kids. It starts with noticing something concerning about a child, then moves to dealing with the medical professionals, getting the right diagnosis, finding the right services and the appropriate educational setting. Sadly, the typical world can be a harsh and judging critic along the way. And the difficulties don’t end in adulthood, because often special needs adults need individualized plans to ensure appropriate employment and living situations. Because each child is so different, it’s not a one size fits all situation.

That’s one way that books and blogs can be vital, as the link connecting individuals, showing people that they’re not alone and others might be going through a very similar struggle. A Regular Guy: Growing up with Autism , by Laura Shumaker is an excellent example of a book that helps create that connection for parents raising kids with special needs. Shumaker chronicles her struggles with the medical profession, helping her son find the right school setting, and to fit in with neighbors and friends. She’s honest about her family’s struggles, and compassionately attuned to the pain her son goes through as well.  The hardest parts of the book are those describing the many tough decisions Shumaker is forced to make, often for her son’s own good, but also hard for him to accept.

I recommend this insightful book for any parent dealing with those tough choices, and anyone feeling isolated or judged by their parenting situation.

Book Review: The Explosive Child

You do everything the experts advise. You set up rules and rewards and consequences and you’re as consistent as possible. But still, your child melts down, throws a tantrum in front of everyone, screams and yells, and you’re left embarrassed, judged, angry, and thinking that you don’t know what you’re doing. Maybe it’s not that you’re doing anything wrong.

Kids with special needs can be difficult to parent. So often, well meaning - or maybe just nosy - friends, relatives and even your own parents may not understand it. “If you’d only…, be tougher, be less tough, do what we do, whatever,...your child would be as well behaved as mine.”  But that advice only works for their children. It may not work for yours.

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children , by Ross W. Greene, Ph.D. may be exactly the help your family needs. Greene presents a different theory behind the meltdowns, the idea that children behave well when they can. And when they don’t manage to hold things together, through tantrums and worse, it’s not that these children don’t know right from wrong, or that they don’t know that their parents are the boss. Kids throw tantrums because they don’t have the skills to behave better.

Greene posits that weaknesses in “flexibility and frustration tolerance” can trigger these meltdowns. These “pathways” to meltdown include “executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills.” That’s a pretty complete list of what a lot of children with ASDs or ADHD may be struggling with. And, the “triggers” to these tantrums are probably pretty predictable as well.

Further, Greene states that continuing to fight, struggle, set a line in the sand, put your foot down, can be just doing more of what wasn’t working in the first place. Greene’s plan involves moving beyond the extremes that parents often choose: either insisting on the adult’s way (Greene terms this Plan A) or giving in to the child (Plan C) to a Plan B, involving collaborative problem solving. In collaborative problem solving, the parent is really functioning as a “surrogate frontal lobe” and helping the child develop those skills necessary to manage tough situations. Greene looks at triggers to explosions, and develops plans to be proactive in avoiding meltdowns, as well as coming up with quick emergency plans for when explosions are about to happen.

Of course, every child is different, and it’s difficult to fit an individual, or a family, into a prewritten book. But Greene give numerous examples, asks some tough questions, and really helps the reader envision how this different way of looking at parenting challenging kids may be the answer. His writing is so clear and methodical that it easily moves the frustration of parenting into a logical, problem solving arena. I encourage parents to read this book carefully, think about your own family dynamics, and try these techniques out for your own family.

Asperger’s and the TV Show "Parenthood"

The NBC show "Parenthood" has brought increasing attention to the diagnosis of Asperger’s, with one of the show’s characters, Max Braverman, newly diagnosed with Asperger’s. With a large, multigenerational cast about many family members, Asperger’s is not the focus of the show, but just one storyline.  I like that aspect, because it’s so realistic; the family copes with Asperger’s, its treatment, symptoms and behaviors, but life doesn’t stop. Work continues, other family members have their own needs, the parents have a relationship that includes dealing Asperger’s, but other aspects as well. 

One recent episode, Team Braverman, focused on the family’s participation in an autism fundraiser. An interesting aspect was that the episode raised the question of when to tell a child about his own diagnosis, something which clients ask me frequently. In the show, Max’s parents asked their vaguely defined diagnosing professional, Dr Pelikan, about what to tell their son. His advice was that there is no one answer, but it was important not to “burden him with information he’s not going to be able to process.” and “when it’s time to talk to him about it, you’re going to know: Max is going to tell you.” The parents later state that this advice is not very helpful, and not very comforting. At the end of the episode, Max asks what I view as the perfect opening question for a discussion of his diagnosis: “Why we did we give the money (we raised) to autism? There are lots of other charities.” Dad Adam looks thoughtful, but passes on the opportunity to have a meaningful discussion about his son’s diagnosis, instead commenting on the trophy.

I agree that children need an age appropriate explanation, but in my experience, kids never seem to find this information a “burden”, instead it’s typically a relief, because they’re aware that their behavior and relationships aren’t like those of other kids. I also agree that kids ask questions when they want to have more information, but they may be subtle questions. Just like with other difficult discussions, parents, like Adam Braverman, can easily miss the cues if they’re not comfortable having the discussion. Shows like Parenthood can be so valuable because they allow parents a bit of practice time to think about these issues before confronting them in their own families. If you missed it, Team Braverman, season 1, episode 12, which aired May 18, 2010, is available online.

Divorce and Autism

It’s a persistent urban legend that autism in a child results in divorced parents. As I discussed in my post Divorce, Single Parenting and Autism, Some Data, published 4/30/2009, people quote divorce rates as high as 80 to 90% in families with autistic children, but they never seem  to cite any evidence to back up those claims. When I first heard those numbers, they were so alarming, I did some research of my own and couldn’t come up with any studies showing the 80% divorce rate. Actually, there wasn’t much evidence of any kind out there, other than an Easter Seals study of 1652 families, along with a control group of 917 families. The Easter Seals study showed that families with autistic children were actually less likely to divorce than families without special needs children.

Now there’s a new study from the Center for Autism and Related Disorders at Kennedy Krieger Institute.  The study found that “64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.” The study used a sample size of over 77,000 children. The review article doesn’t specify exactly how many of these 77,000 children were dealing with autism, but at a standard rate of 1 in 100 children, we could expect this study represents about 770 children on the spectrum.

Also, thanks to GRASP for mentioning this study in their monthly newsletter. Every month they publish an array of interesting articles related to autism and Asperger's.