A Necessity for Emergencies

Several years ago I started wearing a medical ID necklace – you know, one of those tags with a caduceus along with contact and medical info. I was in good health, but I just wanted to make sure that info was available to anyone who might encounter me if I were incapacitated from a wreck or other type of emergency.

I’ve become as attached to the necklace as my cell phone. I don’t go anywhere without it. And I’ve become an advocate for everyone, regardless of age or health, wearing such identification. It would surely make things easier on EMTs and others – plus it would likely save lives.

Which makes me wonder why I haven’t yet been proactive in seeing that my five-year-old autistic granddaughter has something similar. Angelina goes to school, plays in parks, takes swim lessons, rides in cars, and does all sorts of normal things that might present an emergency for which that information could be helpful if not life-saving.

Persons with autism often lack danger awareness, are often prone to wandering, and often live with other health issues. Plus, autism is not easily identified for a first responder. Some autistic persons are nonverbal and/or have intellectual disabilities. Even those who are “high functioning” may be overwhelmed by emergency situations and unable to self-advocate. And these days, since schools have to keep up with every student’s allergies, a wristband or bracelet is a great way to always have that information visible.

We autism grandparents are wonderfully positioned to advocate for such identifications for our grandchildren. We likely have more time than do the parents to research the various types of identification. And we can set the example by wearing something ourselves.

Autism Speaks is the first stop for learning about the various options. Go to https://www.autismspeaks.org/safety-products-and-services to see all of their products. There is of course lots of other information on other websites.

I’ve learned that there are many options for irremovable wristbands and bracelets, including a wide variety of colors and designs. I suspect that Angelina would pick something in her favorite color, pink. And they can be customized to match anyone’s interests.

Do you know what ICE means? In Case of Emergency. The ICE telephone number is the most important piece of information for any wristband or bracelet. After that, there should be name, diagnosis, medications, and allergies. Some bracelets offer the option of a QR code: anyone who scans it will link to a site with all of the information. And there are all sorts of GPS tracking devices – albeit they have to be attached or inserted to clothing or backpacks and thus are not irremovable. But it is great to know where your child is if the bus she is riding on doesn’t show up on time.

There are also anklets, patches, pins, clips, ID cards, shoe tags, etc. But the most important thing is to use something that won’t (can’t) be removed and that is waterproof, convenient, and comfortable.

If your grandchild doesn’t want to wear an identification device, that’s where we grandparents often have time to patiently – sometimes over days or weeks – make our grandchild enjoy wearing it. We can start by wearing something similar ourselves.

Then we can use the small-step-by-small-step method. “First, simply TOUCH the wristband.” “Wonderful! You did it! I’m so proud of you!” Then, later or perhaps the next day, “Now let’s put it around your wrist while I count to three.” Then more praise. You get the idea. And sometimes a visible timer can help. And of course rewards (special candy, special TV show, etc.) are often helpful.

We can make up stories to help introduce our grandchild to the wristband. For example: “Can you say hello to this little wristband? His name is Willie and he is very lonely and sad. He doesn’t have any friends and nobody will play with him. Would you like to hold him?” And you can go from there . . . Eventually Willie and our grandchild may become inseparable.

Just two rules about getting our grandchildren to wear the identification device. Make it fun and don’t give up.

Finally, is there any downside to wearing such identification? I’ve learned that some persons believe that it can be like placing an unfair “label” on someone. (Like me perhaps being labeled old or sick because I wear a medical necklace.) I prefer to view it as a statement rather than a label. And the statement is the same for my grandchild as it is for me: In case I need help in an emergency, I want to assist the helpers in advance by making it a little easier for them to help me.

Our grandchildren don’t fully understand that all sorts of emergencies are possible each day, and that an identification band can be a lifesaver. As grandparents we can first do the research and then introduce this idea to our grandchildren and their parents. And if you’re like me, you’ll get your own bracelet or necklace first.

Can Autism Disappear or be “Cured”?

Ever heard of the Amazing Randi - James Randi (1928-2020)? His professional career was as a magician, and later in life he spent his time investigating claims of paranormal phenomena. He wasn’t a disbeliever; he just needed to see proof. He placed a million dollars in escrow with a Florida Bank – money designated to the first person who could prove something paranormal. Proof was always subject to a very simple test.

For example, when one man arrived claiming to glow in the dark, Randi simply invited the man, along with a few persons who were standing at the nearby bus stop, to come into his office. Randi turned off the lights and nobody could see the man glow in the dark. Again, Randi wasn’t a disbeliever of paranormal; he just needed proof.

Randi disapproved of persons who made money by using fake paranormal stuff to prey on persons’ emotions – such as claiming to talk with deceased persons. Randi debunked several famous mediums by exposing how they did it.

Image Credit: Open Media LTD

How does Randi’s work relate to autism and to autism grandparents?

It is common for us autism grandparents to be asked for opinions and support during discussions about our grandchildren’s autism diagnosis. Do you really think he has autism? She is so much better now; do you think she was originally misdiagnosed? Will you keep him at your house for a week while I attend a special training session that can teach us to cure him here at home?

There is a short answer to whether autism can be “cured”: While there is lots of anecdotal evidence of such, thus far there is no rigorous scientific evidence. In spite of lots and lots of examples of claimed autism “cures,” none has yet experienced scientific proof. Perhaps a role for us autism grandparents within our families is to be like the Amazing Randi – not to disbelieve, but simply to ask for scientific proof.

When we grandparents are asked to provide consultation and guidance regarding therapies and medicines for our grandchildren, we can be helpful by doing some basic research. Of course the website for a specific medicine or therapy is guaranteed to say only good things. Our research should include other websites such as those of reputable autism institutions like the Kennedy Krieger Institute, reputable medical centers such as the Cleveland Clinic, and reputable nonprofit autism organizations such as Autism Speaks. One thing that I find helpful when researching a therapy or medicine is to Google the name plus the word, “controversy.” That’s where you’re likely to find a Wall Street Journal article about a specific medicine or therapy being outed as a sham. (For example, Google “GcMAF controversy.”)

There has been an increasing level of research regarding whether autism can disappear. What we do know is that some persons do “outgrow the autism diagnosis” – meaning that they no longer exhibit a specific group of standards. But recent research shows that these persons continue to have difficulties that require various levels of support, including residual learning and emotional problems.

It has been proven that traditional ABA and newer versions can significantly improve thinking and language skills and various types of behaviors. But thus far there is no scientific proof or evidence that such can make autism disappear. The current science says that it is a lifelong condition. One study of a few dozen children who no longer exhibited autism traits showed, via MRI scans, that they had “recruited” different areas of their brains for certain behaviors. So instead of “recovery,” a better analysis was “compensation.”

There are lots and lots of unproven medicines and therapies that are, essentially, selling hope. The Son-Rise Program got its start from a real-life story that was featured in a made-for-television movie in 1979 about a couple who developed their own therapy systems that cured their son’s autism. Tens of thousands of families have now paid a lot of money for the Son-Rise Program’s training sessions, and the website features praise from such luminaries as President Jimmy Carter, Deepak Chopra, and Coretta Scott King. But now, after more than 30 years and lots of anecdotal evidence, there is still no scientific evidence that Son-Rise cures autism.

Other non-proven “cures” for autism include the domain of integrative and functional medicine – nontraditional medicine. This may, as claimed, be the future “best practices” of the medical field, but its practices are currently absent of the scientific proofing rigor of traditional medicine. Hello, Health is one company founded on integrative and functional medicine. On the website its founder tells how supplements were developed that cured her son of autism. The current products featured on the website contain non-FDA-regulated/inspected ingredients such as organic olive leaf extract, Indian frankincense, sunflower lecithin, fish oil, etc.

Wouldn’t it be wonderful if our grandchildren were neurotypical? If they didn’t have meltdowns? If they were able to have friends and to be invited to birthday parties? If they could grow up and have independent lives and careers? And wouldn’t it be great if there were a medicine or therapy that could make this happen?

We grandparents are usually, because of age and experience, equipped to evaluate claims of things that sound too good to be true. And we can take on the responsibility of doing some research when our children are considering such.

Microboards – Silver Bullets for our Grandchildren?

We autism grandparents, due to our ages if nothing else, are likely to have a much better appreciation for our grandchildren’s single most significant lifetime challenge than do their parents. The challenge is how to have a support system for their adult lives including after their parents and siblings are no longer around.

Just recently I attended a meeting of a small group of special needs professionals, and when this subject came up I said I wish there were a silver bullet. One of the professionals responded that there is one, “microboards,” and that she had recently been helpful in establishing some.

Microboards for special needs persons are relatively new, and have begun to become more recognized over the past decade. Law firms and financial planning firms are beginning to introduce their clients to the concept.

A microboard is essentially a group of persons who, together, take on the responsibility of doing what is necessary to help a special needs person have a fulfilling life based on that person’s aspirations, likes and dislikes, and available resources.

A microboard is a legally incorporated nonprofit entitiy, members are not paid, and the special needs person is a member of the microboard. The microboard’s fundamental responsibility is to create and implement a life plan for the designated person. The microboard adds and/or subtracts members as needed. The membership typically consists of from 3 to 10 family members and close friends. As a board member, the designated person’s voice and opinions have priority attention. Microboard members not only provide their own skills and networks, but also tap into those of their community connections where they have influence.

The one very obvious advantage of a microboard is that it is established to be fully functioning and attentive throughout the designated person’s entire life. Parents no longer have to wonder what will happen or who will make decisions regarding caretaking etc. after they die. A group of dedicated, loving, attentive persons will always be in place to assure that the person’s life is the best it can be.

My five-year-old autistic granddaughter’s parents have too much on their plates right now to worry about what will happen 15 years from now. But I, like all grandparents, know that small children do grow up and do need support systems.

Perhaps we grandparents can take the lead in introducing the concept of “life planning” to our grandchildren’s parents.

Are microboards silver bullets for persons with special needs? Since they are so new, we won’t know the answer until they’ve run their course with a lot of persons.

But there is an analogy that I am very familiar with: boards for 501c3 nonprofit organizations. These organizations became popular after the passage of 1960s legislation that required arts organizations to have 501c3 status in order to apply for federal grants. Today of course there are a zillion 501c3 organizations for all sorts of charitable endeavors and all of them are required to have boards of directors. Each board’s responsibility is similar to that of a microboard: provide oversight in determining and implementing a plan. The theory is of course that a board of directors is just the thing to assure that an organization is strong and worthwhile and adhering to best practices.

Now that a half-century has passed since the proliferation of 501c3s and their boards, we know that boards, in themselves, are not silver bullets. In fact, almost all executive directors of nonprofit organizations can point to ways that their boards can be counterproductive and even detrimental.

Following are six challenges that 501c3 boards face - challenges that I suggest that microboards may also face.

1. STAFFING THE MEMBERSHIP Someone has to keep the board members engaged both emotionally and physically. This takes ongoing, person-by-person work. Being on a microboard - like being on a 501c3 board – is a volunteer activity. There is a tendency among all of us to be cavalier about our volunteer activities and see them as far less important than things in our “real” lives.
   

2. “PAPERWORK” An incorporated microboard is required to submit federal forms, document all sorts of things, send and receive communications, keep minutes of board meetings, etc. etc. There is a need for constant, ongoing work on the keyboard and the telephone. Once a 501c3 organization gets behind, it can be almost impossible to catch up.
   

3. KNOWLEDGE Who on the microboard will have the responsibility of investigating housing? School systems and IEPs? Free public services? The learning curve regarding special needs persons is steep, complex, and never ending.
   

4. MONEY When there is a need for money, what is the source? Who determines/approves expenditures?
   

5. BOARD MEMBERSHIP Who should be on the board? Who are prospective board members and what is the recruitment process? What if a board member isn’t good? What about board disagreements? (Experience has taught me that it is risky for a 501c3 organization to add any new member who hasn’t first demonstrated three years of love for the organization.)
   

6. LEADERSHIP Nonprofit boards are only as good as the leadership of the nonprofit organization. Certainly the same will be true for microboards; the leader will indeed set the pace and establish the tone.

Right now (2021) the concept of microboards is relatively new and filled with hope. Conceptually a microboard can help assure that my granddaughter’s entire life will be fulfilling, and that she will always be surrounded by persons who love her and are attentive to her needs.

Let’s hope that that is indeed the case for microboards. But regardless, we autism grandparents can consider taking the lead in introducing the concept of a life plan for our grandchildren.