Tag Archives: special needs

Two A’s and a B and Lots of Smiles

I believe we are at about thirty-three thousand feet and the pilot is about to tell us all to stay put as we enter a storm system over the Rockies. I’m heading home. Today was my last day on a two-city trip. On this trip I saw adults and kids in Cincinnati and St. Louis.

As I’m heading home I can’t help but smile as I think about the kids and adults I’ve seen over the last two weeks and all we shared.

NACD Bob Doman Blog - AllyMy trip started off with Ally. Ally is one big giant perpetual smile. She smiles as she comes in the door, she smiles as I speak with her parents about what a “turkey” she can be, she smiles after she shows me her walking and she smiles and waves goodbye—“See ya Bob.” Ally is twelve and is now, after lots and lots of work, starting to walk on her own. She is in a typical classroom and doing well academically. She still needs large print, but reads well. She talks up a storm and is generally a delight, although she loves to torment her mom and dad. I first saw Ally when she was 10 months old. Ally was shaken by her babysitter when she was four and half months old and severely brain damaged. By the time I saw her, just months after her injury, she had shunts in both sides of her brain to relieve the pressure, had suffered retinal hemorrhages and essentially had no vision, was diagnosed with infantile spasms (severe seizures), was on two different seizure medications and was recovering from breaks to both legs and her left arm. Devastating, but Ally’s parents are exceptional folks and have worked wonders with her. Every time I see Ally I remember where she was; and although she has many pieces yet to be put together, she is a trooper, doing great and smiling!

NACD Bob Doman Blog - Abby - Down SyndromeSt. Louis started with Abby, a seven-year-old ball of fire. She runs in the room with her mom and throws her arms around me and gives me a big smack on the cheek. Abby has Down syndrome, but it surely isn’t slowing her down. She’s in a typical 2nd grade class—academically and socially right there with her peers. But I’d be willing to bet that Abby generates more smiles and warms more hearts per minute than 99.9% of the kids on the planet. Typically, when she leaves her evals she turns, waves, throws me a kiss and impishly says, “Bye, Bobby.” More smiles!

Today, my last day of the trip, I saw Brae who just started on program in February and today her two sisters came in for programs. Both of the girls are going to be absolutely brilliant. Brae has a genetic disorder that has the long name of Inverted Duplication Deletion 8p. To her family and me, she is just cute, fun, smiling Brae with unlimited potential. Today she came in and from across the room looked at me, eyes focusing and working together, converging and gave me a huge smile—a smile that remained in place throughout our time together. Today I got to see her walk by herself without as much as a finger of support. Big deal! Gargantuan deal—wonderful!  I also got to hear her talk. Big deal! Gargantuan deal! And I got to see her smile, I got to see her mom smile and when they left, her mom gave me a big hug and we shared the miracle of her girls. Brae and her sisters made my day special. Another in a stream of literally thousands and thousands of wonderful days filled with incredible people.

 

 

As I sit here in the plane and think about the trip and the incredible range of issues that needed to be addressed, I ponder, as I do in virtually every waking moment and through most of the night, how do we do this better. I know there are a lot of things our kids and adults aren’t doing yet, that we need to figure out and work on, but as I review our time together, we had smiles—big smiles and lots of them. Wherever they or their children are on their voyage, however far we are striving to go, everyone of them, everyone of the parents were smiling about who their kids are today, valuing them for who they are and appreciating where they are on their journey. We were all thankful for them.

We see kids for who they are, for what they can do, for what joy we can bring to their lives and what joy they can bring to ours and others’ and we all share in the joy of watching them grow. I feel humbled and privileged to be able to participate in the process.

Thanks!
—Bob

NACD Down the Rabbit Hole - Magic Pills

Down the Rabbit Hole

A number of years ago I had a group of about fifteen families who lived in a small town in Canada and would come down to our chapter in Lethbridge. I would see the families every three months, conduct their assessments, and redesign their programs. It was a close-knit group of families who did a great job of supporting each other. A month after one of my trips, a vision therapist moved into their small town, and the word went out that he could find and address a variety visual problems, problems that “affected virtually all aspects of developmental and educational problems.” To make a long story short, virtually every one of the families signed contracts to get “treatment” twice a week from this guy. When I saw the children two months later, every child who had tracking, convergence, or other visual issues was significantly worse, and a number who had not had an issue now did. These families had all gone down the rabbit hole and discovered that they had wasted time and money and, most significantly, harmed their children. This was a problem years ago, but now with the Internet this is a much greater problem than it was then. Pooling ignorance and opening up new rabbit holes just gets easier.

I am sorry to hear when we have a new snake oil salesman come to town and parents—anxious for a quick, or quicker, fix and with a fear that they might be missing something that could help their children—line up to jump down the rabbit hole. With the Internet, chat groups, and conferences, these things now spread through various groups like viruses, infecting many and constantly morphing. Unfortunately there are no vaccines for these viruses other than science and education. Many folks have a concept of research that is defined by checking a few boards and seeing how many people are jumping on the train. Parents need to really understand and to really research the science—if there is any. Sadly, as happens, a little bit of pseudo-science leads to a lot of garbage, big business, and a lot of rabbit holes.

We at NACD are uniquely positioned to discover what works. We work with the whole child, not seeing them as pieces in isolation, as does most of the world. We are philosophically driven, not methodology-driven or product-driven. We are not out to sell any specific method or a technique, a pill or whatever; we educate parents and professionals and work to advance the science. We are not giving parents generic therapeutic or educational tools. We are constantly investigating, evaluating, and developing new and better ones and learning time and again that specificity, frequency, intensity, and duration and hard work are the keys. We have six decades of experience with tens of thousands of whole children in whole families from around the world approaching the work from the perspective that we are always looking for better tools. We have thousands of tools in our toolbox and do not hesitate to send a family to a specific practitioner if we feel that they have something to offer. The list of treatments, that we refer individual children to is as long as my arm; unfortunately the list of what appear to be inappropriate (for a specific child), harmful, or ineffective treatments (and which often have associated products to purchase) is longer than both my arms and legs put together. With our international network, there isn’t much that we don’t hear about. After all, our families are all free to pursue whatever they want, so we keep hearing about all of the rabbit holes and the occasional valid treatment.

We gather tons of data from our children and can generally look at any individual child and group of similar children and watch their progression globally and in specific areas. As we do this we look for outliers, those with bumps up or down in their developmental curves, then look for a cause. We do this constantly with new techniques that we develop, watching to see if we are changing the curve beyond what we would have expected before. We always watch with particular vigilance those children who are receiving some outside treatments or therapies. We then engage in our favorite “free-time” activity, conducting research and reviewing research. Based on our analysis we may see some promise in an approach and await more data. If it seems valid we try incorporating it and gather more data ourselves, refer families out to receive the treatment, and continue to gather more data to either isolate for whom it might be applicable or helpful or determine if it is a valid approach.

As many of you know, I have long said that the example of one is worse than no example at all. We are constantly seeing epidemics of treatments based on one or two parents thinking they had found the magic pill. Parents are very susceptible to believing that something worked. Particularly troublesome are the treatments that say that “any change you see in your child in the next day, week, month, year is a result of this specific thing we are going to sell you.” Unless kids have an underlying health problem that we need to help the family address, we can look at how much program we are able to get accomplished and have pretty strong expectations of outcomes. Most children change. Change does not mean that something worked. Scientifically isolating the pieces and having sufficient data is the key and which is why we have been so uniquely positioned. I have always been a skeptical optimist. When I hear of something new that sounds promising, I am always hopeful that it will work. At the same time, I am very cautious with our families’ time and resources and their children’s futures. Most of these “new” treatments have been repackaged over and over again, or pieces from this and that combined to present something “new,” and most are marketed and built as businesses. When you understand the complexity of a child and see how many of these “practices” are built on practitioners receiving a weekend training and supposedly being able to apply treatment and sell products addressing a broad range or problems and conditions, you should start waving a red flag. (I generally just see red.)

We certainly don’t have all the answers, nor will we ever, but we feel responsible for the children and families we work with. We have only one goal: to help them get to where they want to go and to get there as quickly as possible, using whatever means available. Our single biggest problem, without a close second or third, is getting enough program accomplished and accomplishing it well. We have to give most families a compromised program because of their lack of time and resources to get their program accomplished. Every one of our evaluators can look back over their years and caseload and see the great successes, be they kids on the spectrum, brain injured, ADHD, typical, or Down syndrome, and we can all tell you why the great successes were there. They did program and they did it well. None of our top kids in any category did anything beyond program or the few specific outside things we might have recommended. Pretty universally, those finding rabbit hole after rabbit hole to jump down are not the success stories. NO MAGIC PILLS OR MAGIC BULLETS!

When I hear of families spending thousands of dollars for something that some parent said worked for their child, all I can do is pull out my hair and scream to the mountains. When I hear how much time and money they spend on “magic pills,” my mind always jumps to how much help they could bring in and really do a great job with their programs for what they are spending on jumping down the rabbit hole. We all have limited time and resources, and not many of us can waste those.

Families go to conventions, many of which are actually just sales events; most speakers aren’t there to educate, they’re there to sell. Families mistakenly feel that if someone is speaking then they must have some credibility. No, often they are just adding to the list of things parents can buy or buy into. The organizers feel they are helping families by exposing them to as much as possible. The rare times we agree to speak to a group it is to help educate the parents, not sell them something. We disseminate knowledge and information. We have been proud to be at the forefront of developing better and better insights and methods to help the full range of children and to see the fruits of our labors change perceptions and opportunities for our children. To borrow a line from a TV ad, “We know a lot because we have seen a lot.”

Two generations of work have just reinforced that the basis of all neurological growth is neuroplasticity, meaning we change the brain and cause development to occur by supplying the brain with specific targeted input with sufficient frequency, intensity, and duration. It is a proven process, it works, but it necessitates time and work. You can no more produce significant neurodevelopmental change with a magic pill than teach a child algebra overnight with a drug or supplement. We will continue to find better, more specific tools and to create more and more insights.

There is a lot to learn and we understand that parents have only so many resources and so much time. We try to help families utilize their limited resources well and productively and we will continue to rely on and develop the science. There are many scientists, professionals and groups that are helping to develop the science and improve the lots of all of our children, but it becomes more and more difficult for parents to sift through all of the chatter. Despite your child’s problems or diagnosis, your child is unique. Your child’s problems, issues and needs are specific to your child not to their label or diagnosis. Every one of the tens of thousands of children we have worked with were unique. Understanding that and seeing every child through fresh eyes has been fundamental to our successes.

Please beware and please avoid jumping down rabbit holes that only make your goals tougher to achieve.

May 15, 2013 – International Day of Families

bucuresti2Today I have been seeing families in Bucharest, Romania. This is my second of eight days of seeing children and families here. I arrived in Bucharest after seeing children in Barcelona and London. Between these three cities I will have seen families from many different countries. All of these families have children with developmental issues; all of these families are dedicated to their children; and all of these families are assuming responsibility for their children and their children’s futures. They are all exceptional and can serve as models for parents and families everywhere, not just families of children with issues, but all families.

In all of my years of travel, seeing children and working with and through families, there is one glaring truth. Wherever the families live, whatever their nationality, whatever their heritage, whatever form of government they live under, whether the family is defined as one parent or two, as only one child or a house full, grandparents or extended family in the home, whatever constitutes the family, they are all united in the care of and dedication to their children and the assumption of responsibility for their children. These families are not looking for their governments to do the job; they rather universally only ask that the government stay out of their way. These are dedicated parents who are absolutely amazingly alike.

In the seventies I was the clinical director of a large United Cerebral Palsy organization. I received grants from the state and federal governments and created model programs and was by most definitions quite successful producing significantly better results than other schools or agencies. But I came to a realization: that whatever I was able to provide for those children within our school and clinics, it was not enough. I also realized that the governments were never going to have the funds to give the children enough, and that expectations were not based on potential, but on the economic realities of what the system could afford to give, and that over time everyone bought into and accepted this distortion of reality and potential. Actually, not everyone–not the families I have been working with all these years. The families who say, “This is my child, this is my son, this is my daughter and I am responsible. I am going to help my child be all they can be. Help me or get out of my way.”

So on this International Day of Families, I am happy to offer up our NACD families from all over the world as models for what families can and should be. All of us at NACD are privileged to be able to know and assist these fantastic families.

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NACD International

Living the Dream

I had heard about a young restaurateur who happened to have Down syndrome a few months ago, but today I was sent a link to a youtube video about this young man. Take a look:

I have imagined a “Tim’s Place” for years. A business owned by one of my grown NACD kids, a place that can take advantage of their talents, a place where they can contribute, make a difference, make a living, and spend their days doing something they can be passionate about. For a number of years I have been encouraging the parents of children with developmental issues to look toward their children’s futures and start thinking about creating a business to help take advantage of those talents, abilities, and passions. Tim is a good example. Like so many of our kids Tim obviously really likes people and defines a “people person.” I suspect that Tim also remembers people’s names very well, as so many of our kids do, and I suspect that once he has met you that you get added to his list of friends. Tim is ideally suited to be the upfront, greeting-the-customers small business owner.

I have been frustrated along with many of our families with the lack of opportunities for our young adults. I have seen families work hard to help their children develop their cognitive function, the academic abilities, social skills, and to become highly capable and then fail to find meaningful work as adults. I have even had individuals with Down syndrome get regular high school diplomas and even college degrees and still not find decent jobs, let alone jobs that they could be passionate about.

The job world is not kind to our kids. If you look at the reality of employment, you start off with the real unemployment rate, which could be pushing 20%. So what is the unemployment rate for people who are really short, have a speech impediment, have any physical problem, or who just look a bit different? If it were possible to gather these numbers they would be ugly; and add on any type of mental challenge and the reality is truly frightening. Enter the NACD Foundation “Exceptional Entrepreneurs” Project: http://www.nacdfoundation.org/entrepreneurs.php

Through the NACD Foundation I would like to bring together a volunteer team of parents, business and legal folks to help us create some templates to help our families help get businesses going for their kids. I have also wanted to build some models such as coffee shops and perhaps have the Foundation assist in raising funds to help build some of these businesses for the kids.

I’ve had a dream, and Tim’s Place: Where breakfast, lunch and HUGS are served is the realization of that dream for one deserving, lucky young man. We need to help more of our kids live this dream.