The NACD Community – NACD Facebook Group

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May 2020

 

I am pleased to announce that we are launching an NACD Facebook group. We are hopeful that this will serve as a vehicle to provide our members with even more support and to strengthen our community—our NACD family. It is very important, however, that we do it properly.

The majority of families in the world are not potential NACD families. The majority of parents are comfortable letting the schools, therapists, and other professionals direct and supervise the education and development of their children and are willing to accept the outcomes.

NACD families are cut from a different cloth. Although they are from all over the world and have children ranging from severely disabled to accelerated, our families have similar characteristics and attitudes. Our NACD parents universally want more for their children, and they realize that they need to assume the primary responsibility for their child’s development and education if they are going to help their children realize their potential. Our NACD parents want more.

There have been a few occasions when we were really able to embrace the NACD family. In the two years preceding the 9/11 terrorist attacks, we held the NACD Rendezvous for our families in the mountains of Utah. Both events were great successes, and it was wonderful seeing our families get together and share their mutual love and hope for their children and just “be” with others who shared their commitment and dedication. Unfortunately we had to discontinue the Rendezvous after 9/11 because of the financial impact 9/11 had on many of the families and the organization as a whole.

In June 2019 an event similar to the Rendezvous occurred, this time in the mountains of Transylvania. Our Romanian families organized this weeklong event at a family friendly mountain retreat. During this week I was able to do all of the children’s tri-annual evaluations and spend some great time with the families, share meals, and just hang out with the parents, kids, and their siblings. Many of our families expressed how wonderful it was just spending time together and sharing their experiences, victories, and some of their heartaches as well. Being able to do this with other families who “got it,” who shared it, was invaluable for them. Since last June I had been looking forward to repeating the Transylvania event, but COVID-19 eliminated that possibility. Hopefully next year!

The Rendezvous and the Transylvania event exemplified how much our NACD families have in common, both from the perspective of their children and meeting their children’s needs, but from also their need for a sense of community. Our NACD family is a special group of folks, and I am hopeful that we can strengthen our community with our new NACD Families Only Facebook group.

The reality of now is that we in the NACD family are spread all over the world and we cannot easily meet together. I have high hopes that we can at least partially create the same sense of community that our previous events had, but to do so we need to define what we should and should not do with the group.

What we should do is replicate the Rendezvous and Transylvania experience as much as possible. To do that we want to share stories. We all are fueled by hope, and seeing what other families and their children have achieved gives all of us hope and inspiration. The more we can share about our kids lives and achievements, the better. We can also share our heartaches and frustrations, not looking for specific guidance (that is what the staff of NACD is for), but certainly for support. We can also use the group to share things like ideas for unit studies, favorite children’s books, educational websites or TV programs, or fun apps that you have discovered. The Facebook group is also going to permit our NACD staff to hold live video meetings with our families and address questions throughout the year.

One of the most important messages, if not the most important, I have tried to communicate throughout all of my years of working with children is how unique each child is; and if we are going to utilize neuroplasticity, we have to be as targeted on each day with each child as we possibly can. Our list of more than three thousand individual techniques, with the tens of thousands of modifications to those, that are created for specific children at specific times bears testament to our conviction to target the specific needs of each child.

The “thing that changed Susie,” the “magic bullet that cured Johnny,” or that “taught Johnny to read” perhaps helped them. But every specific thing that for whatever reason was associated with a change in a specific child has the potential to help or hurt every other specific child. Some of the greatest tragedies I have observed have been the result of families jumping into something that sounded “right,” only to have it undo years of work or lead to outcomes that could not be remedied. Our job at NACD is, and has been, to be aware of, to investigate, to evaluate, to carefully observe, run our own trials, gather data, and constantly challenge what appeared to be, so that we can determine what we believe to be best thing for any child at any specific time in their development and education. We are in a constant ongoing pursuit of what works.

NACD is and has been unique in our insistence of working with the whole child. Four decades of working with many thousands of whole children has been both enlightening and humbling. Our experience and the wealth of knowledge we have gathered certainly has been educational for us; but the more we have learned, the more it has been underscored over and over again that each child on any given day is an incredibility unique and complex being. Our job has been to help every parent be as targeted with their child as possible and to help them avoid running down rabbit holes and doing things that might actually be harmful.

As should be apparent, we form this group with some level of trepidation. Historically many of the viral “things,” the magic pills that have spread across the country and world, were not made viral by the professionals, but by parents—well intentioned parents who wanted to share. I have told hundreds of parents over the years that a parent’s experience of “one,” their one child, is extremely dangerous. What appears to have helped your child might have helped your child, but the reality of attempting to scientifically determine cause and effect with all the components involved in the physiological, behavioral, and developmental aspects of a single child is really difficult. And even if the dots can be connected for your child, it doesn’t mean that it is at all appropriate for another child. Well meaning parents can be the undoing of children whose parents are looking for hope and help. Facebook groups of parents who are taking their experience from their one child and sharing what “worked” have the potential to be destructive and harmful; for that reason I have discouraged groups of parents from sharing and discussing specifics of what they have done with their child or heard that someone did with theirs. Drawing from my college days, group discussions were often referring to as ‘’pools of ignorance.” Let’s not do that. In our group, let’s please stick to the guidelines. In addition, I strongly wish to discourage any of our families from starting any unsupervised Facebook groups that involve NACD parents.

The NACD Families Only Facebook group is being made available to our active families. I believe this group offers us a great opportunity to strengthen our NACD community and add to everyone’s NACD experience. Please enjoy it, please share you successes and resources, and, if needed, heartaches. But as for your specific questions and concerns, or even the specific things you are doing or have discovered, please discuss those directly with your coaches and evaluators.

 

Enjoy the group.

Let’s all do our best to help our children and support each other.

 

Best,
—Bob

 

 

How to Join

To join the NACD Families only Facebook group, please go to the following link and answer the approval questions. Approval can take a several days to process.

https://www.facebook.com/groups/ActiveNACDFamilies/

 

Once there, you will need to fill out the following questions:

Question 1:
Are you on a paying membership with NACD?

Question 2:
What is your NACD Family Portal User ID#? This is to confirm your membership status.

Question 3:
What Chapter are you in?