Response to Op.Ed. on Environmental Toxins & Neurodevelopmental Disorders

[Note: This blog article is in response to the February 24, 2010 New York Times Op. Ed by Nicholas Kristof titled, "Do Toxins Cause Autism?"]

By Tesi Kohlenburg

Kristof is on the mark here in so many ways. Philip Landrigan was the keynote speaker at my organization's Fall conference here, and his talk was both fascinating and frightening.

As a pediatrician, as a child psychiatrist, and as a mother, there are a handful of things that I believe we all should do NOW:

1. Stop heating food in plastics. ( And don't put away warm left-overs in plastic containers, either. And don't drink things that have been left sitting in plastic bottles in warm locations like cars. And don't drink soft drinks and juices from plastic bottles -- evidence is beginning to come in that the acids in soda pull chemicals out of the plastic bottles that are themselves promotors of obesity, independent of the calories in the soda. Most of all, don't put baby formula in plastic bottles containing Bisphenol A or other plasticizers.)

See this link for more about obesogens http://www.newsweek.com/id/215179

2. Learn which are the most pesticide-contaminated kinds of fruits and veggies, and either don't buy them, or buy them organic.

• ( Berries, which are so good for us in many ways, are sadly among the worst offenders in terms of pesticide contamination.)

3. Read labels, and reduce or eliminate our exposure to food dyes and preservatives. This means making our family's meals from uncontaminated whole foods, fresh fruits and veggies, meat that hasn't been given hormones, etc... not eating from boxes, bags, and cans full of additives, stabilizers, texturizers etc.

4. Be very careful about disposing of chemicals. Whatever we put in the water goes into our world. See this CBS News report on the contamination of our drinking water with prescription medications: http://www.youtube.com/watch?v=RE7OK9sMDvo

For more resources, visit:
The Environmental Working Group at: http://www.ewg.org/home

OR

The Mount Sinai Children's Environmental Health Center (Dr. Landrigan's center) at:
http://tinyurl.com/c5xnx2 ).

This emerging knowledge can protect all of us and our children from the consequences of exposure to air, water, food and household materials full of newly-invented chemicals, many of which have not been tested, and a good number of which are now being shown to have undesirable effects on our bodies and brains. These chemicals can have powerful effects on fetal development and in early childhood, when all of the cells are differentiating and learning where they belong and how they're supposed to function.

With great concern and also hope that we can change,

Tesi Kohlenburg

[Tesi Kohlenburg is a physician and the parents of a child with apraxia of speech, dyspraxia]

Quiet

Quiet

By Pia Prenevost

Sometimes he is so quiet.

Frequently he is so quiet.

Word attempts are sporadic.

I can never predict when

he might make a sound or word.

He doesn't jabber or babble.

Not to himself, and not to us.

At least, not often.

He is quiet.

Some days I think he wants to communicate.

To talk.

Other days I think he is happy being quiet.

Wordless.

Apraxia………..

by Michelle Genser-Jones

The expressions in your face
Show the words you can not say
Not a fault, of yours nor I,
But of Apraxia,

Unknown to most….
It is not heard, nor seen,
But a Voice it takes

Scared parents…cry…worry
While surrounded by others…
Who just can’t understand

The fate, the destiny of their loved child
Seem unfounded through the endless wait…
With ears constantly ready for that first word
Joyful tears pour out when it’s finally heard

Words…movements… Sounds, may be found
Only to be lost once more,
And re-found at a later date
Dreams only to remain are those shared

Between child and parent
A bond always remains

Is Your Nonverbal Child Safe on the School Bus?

by Sharon Gretz, M.Ed.

[April 14, 2013:  Unfortunately, it keeps occurring.  Today we learn of 3 year old Elliott from Minnesota, who has childhood apraxia of speech, and never made it to school.  His mom thought he was playing and learning but he never made it and when he did not arrive at home on the bus and she called the school, the school said he had not been there. He was found 4 hours later still strapped in the bus in the bus terminal.  We are so grateful that Elliott is safe. Please read the article below and consider what you can do for your child or in your school district to make sure this doesn't happen!]

Two weeks ago we learned of a very disturbing story via the internet about a four year old girl with childhood apraxia of speech who was left unattended and forgotten on her school bus for over three hours. Little blond Ava was unable to yell out for help. Despite school district bus safety policies and procedures, the bus driver allegedly failed to do the seat by seat check that would have located Ava in the rear of the bus. An investigation ensued and shortly thereafter the bus driver resigned.

Ava’s family would like the Apraxia-KIDS community to understand how important it is to ask questions about your school’s bus safety procedures and to ask for a written copy. No one thinks that this can happen to their child, however, on the CASANA facebook page a number of parents are reporting similar stories about their child being placed in unsafe situations. For example, one boy was driven past his bus stop but could not tell the bus driver and was taken back to the school before he was noticed. Another child was crying on his bus but since the school bus driver did not understand his communication, no one knew why or what had happened. And tragically, a similar story occurred a decade ago to another little boy who was left on the bus in the bus garage for hours. On a brighter note, parents on our Facebook page also discussed safety procedures that are in place for their child who is nonverbal or limited verbal.

So the bottom line is this: What can parents to do best protect their child with limited intelligible speech?

1. Make sure that your school district has bus safety procedures in writing and assure that you get a copy of the policy.
2. Inquire about whether your child’s bus driver has had special needs training. Arrange a meeting between school administration and your child’s bus driver to discuss your son or daughter’s communication needs.
3. Include travel safety and transportation details as part of your child’s I.E.P. Transportation is considered a “related service” and so specific transportation details can and should be included when the IEP team has agreed to include transportation for your child. A transportation plan would be a tremendous addition to the IEPs of children who are unintelligible or nonverbal.
4. Communication goals at school and at home should include self protection and self identification goals. Children with communication challenges need a way or need practice with skills such as calling for help (“Help Me”); how to gain someone’s attention (“Hey you!” “Wait!”). These phrases can be incorporated into speech targets or augmentative communication.

Having a child left alone for hours on a bus is easily every parent’s nightmare but is particularly disturbing if the parent is already concerned about a child’s ability to speak out. Careful planning and team work are essential to assure the protection of all, but most of all for the child. 

If you are a parent, do not let your concerns and worries be pushed aside. If you are an educator, be an advocate to make sure that children with no or little speech are kept safe!  For a guide designed for both parents and educators, please read An Overview of Special Education Transportation:A Primer for Parents and Educators.