772-335-5135 [email protected] 2301 NE Savannah Rd, #1771 Jensen Beach, FL 34957

Resources for Speech Patholgists (and Ambitious Parents)

The SLP “Start Page” – For Speech-Language Pathology Internet searches and resources
SLP Start Page

Speech And Language Disorders – A site with links to just about everything you might want to know.
NICHCY

Analyzing Early Childhood Language – Excerpts from The Communication Analyzer’s Guide by Jim Finnerty
Analyzing Early Childhood Language

Communication Disorders – This is an extensive list which covers how to find a professional to legislation, rules and regulations and much, much more. Of interest to the professional.
Communication Disorders

Communication Disorders
More Research Links

Free Services To Speech Therapists
Speech Therapist’s Site

Apraxia: Questions and Answers

by Lori L. Roth, MA, CCC-SLP Oral Motor and Verbal Apraxia Specialist

Common speech disorders:

There are several speech disorders affecting children. They include articulation problems, phonological processing disorder, verbal apraxia, oral motor apraxia and swallowing difficulties (which run the gammit from oral motor coordination problems to the inability to control food within the mouth resulting in gagging and choking), lisping (/th/ substituted for an /s/ sound in speech), stuttering, and voice problems (hoarseness, nodules on the vocal chords). These do not include cleft palate nasal speech and/or deaf speech, which are the result of serious and obvious physical disabilities.

Definition of apraxia:

Apraxia is a neurological disorder in which the inability to coordinate or initiate muscle movement prevents the action requested when the muscles are adequate for these motions. It was originally used for stroke patients (geriatric population) but has recently (past 20 years – 1980’s) been applied to children exhibiting coordination/ motor sequencing difficulties of speech sounds. Verbal apraxia is a neurological disorder where children are unable to coordinate and/or initiate movement of their articulators (jaw, lips and tongue) for the production of speech sounds. Oral motor apraxia is a disorder where the coordination of the articulators is hampered for non-speech (raspberries, blowing whistles) or vegetative (eating, chewing, swallowing) skills. Both coordination/initiation disorders are neurologically based and therefore may be present in conjunction with other disorders, i.e., ADHD, Autism, Downs Syndrome, Hearing Impairment, etc. Both disorders present with a range of severity: mild to severe.

How prevalent among speech disorders is apraxia?

In my practice I see 21 apraxic children weekly for therapy (total 40/week). I would guess that 4/15 children have a speech delay or disorder and 2 have some degree of apraxia, either oral motor and/or verbal.

Discovery Of The Late Talker-Apraxia Protocol

How many kids per year are diagnosed?

Over 42 million Americans have speech disorders and 80% or 85% of the referrals to the Early Intervention Programs across the country are for speech delays (statistics from the American Speech, Hearing and Language Association, ASHA, the organization that certifies Speech Pathologists and Audiologists and sets the standards for these professions for training, research and practice.)

How do you tell the difference between a late talker and speech disorder (apraxia)?

Children with verbal apraxia present with “flags,” or criteria/symptoms which eliminate the label of late talker, a developmental disorder which will right itself without intensive, specific, one-on-one intervention. Apraxic children have never demonstrated early sound play. They tend to be quiet babies, often described as “serious” children. They do not, nor did they, babble(the noises babies classically make ie “gaga, googoo”). Apraxic children understand everything but, in contrast, cannot demonstrate their understanding with a verbal response. Most times, their imitative skills are good. When given a model, they can approximate the presented word, but they cannot produce the sound/word/sentence volitionally without this model. The number of movements required for sequencing to produce a message greatly affects the outcome. Their ability to repeat these series of movements in sequence for a particular word or sentence is significantly hindered. Their inconsistency for this task is the single most important criteria for a differential diagnosis for Apraxia of Speech. Children with verbal apraxia tend to be unable to find classic approximations for common words, or familiar phrases; “dit dow” for “sit down” or “tuck” for “truck” are beyond their capabilities. The prosody (melody) of speech, i.e., inflection, stress and pitch, are usually affected also in verbal apraxia.

How is a child diagnosed?

The best way for a child to be diagnosed is an evaluation by both a pediatric neurologist and an experienced speech pathologist. Standard tests for articulation delays are available but an experienced Neurologist uses both sound error tests as well as language tests for determination.

How do parents typically react when their child is diagnosed with apraxia?

What does it mean for the child and family? The words neurologically based disorder send up a flag for them. Most do not initially understand the complexity of the problem. It is only when they go on the Internet to the various sources (Cherab, Children’s Apraxia Network, ASHA) that they begin to understand the seriousness of the diagnosis. The parents go through a grief-process; because they now know the problem won’t right itself. Dreams and expectations need to be put on hold and a process of finding the “fighting spirit” must be brought to the forefront. Children need their parents to be advocates for them. Misunderstanding about their abilities, mislabeling of their condition and the misunderstanding of their speech makes these children more dependent upon their parents as translators, teachers and defenders.

What is appropriate therapy?

Research has shown that an intensive (3- 5 times/weekly), individualized speech therapy program should be started as soon as the child is diagnosed. Therefore, the earlier the child is identified the better the predicted outcome. Without this type of intervention, the child’s communication skills may improve as he grows older, but his speech will be filled with errors making him unintelligible to an unpracticed listener, set apart from his peers and significantly affect his self-image. Therapy does not provide a “quick fix”. Most apraxic children will be in therapy for over 2 years and often longer. However, all but the most severe apraxic children, if given the appropriate therapy, will eventually be competent oral communicators.

How important is it to get a diagnosis verses just continuing with regular speech therapy with no definitive diagnosis?

Traditional therapy tends to approach mis-articulation with tasks that at first drill sound production in isolation until mastery. Then the therapist designs tasks with the error sound in specific single syllable words in the initial or final or medial position until mastery. Following the mastery of this skill the words are put into short phrases, structured sentences and finally into activities which foster the carry-over into casual conversation. For children with verbal apraxia, therapy focuses on the motor movements in sequence for the production of a meaningful word. The faster the child can put these sounds into words (approximations) for functional communication the better these units will be practiced in daily activities. The experienced therapist will not necessarily follow the typical hierarchy of sound development (Vowels, PBMHW, TDN, KG, SH, CH, LSZ, J, TH) but will use the sounds the child can produce as a jumping off point for functional vocabulary and communication. Oral motor and imitation skills will be of significant concentration so as to warm-up the muscles to do the movement sequence. Focus on the vowel sounds preceding and following the consonant of practice will also be closely monitored to ensure the best possible production. Then intensive repetition of the word, words and phrases will be practiced to aid the muscles and neurological pathways in remembering the sequence of movement for this production. Tactile cueing (the touching of the face, and/or lips), visual models (mirror work), and kinesthetic cues will also be employed to give the child the most information the therapist can for the production of the sound, word or phrase. This is a much more complex therapy routine than the traditional techniques.

What can parents do to help?

Parents are an integral member of the therapy team. They are the best motivators, the best translators and the most invested partner. The experienced therapists would be well advised to make them the models during the treatment sessions. Use their list of their child’s wants, needs and likes as a loose structure for vocabulary expansion in therapy. And listen to their concerns, and elations as the child progresses. Each child is different but in general children build a core vocabulary of nouns, verbs, adjectives and prepositions. They produce each word singly and then in pairs. As the child becomes more flexible and comfortable with the vocabulary, he/she expands on the word order and length of word strings producing kernel sentences. From there, children group single sentences to short paragraphs and stories of events they remember, see or make up.

Thanks to Seton Hall University Law School!

We are proud to announce that we were voted as the primary recipient of Seton Hall University’s Law School’s Competitive Grant.

Because of this Grant, as well as the continued wonderful support of our current sponsors and others, the Cherab Foundation will soon be able to:

  • Provide subsidized screenings for speech and language, as well as subsidized group therapy for the children.
  • Begin various research projects with participating hospitals, physicians and speech and language pathologists. (Names to be announced soon.)
  • Create much needed new schools/ and or educational programs for apraxic children.
  • Raise awareness to the medical community, which will raise awareness to the general public, about apraxia, and the importance of Early Intervention for any child who is non verbal at 2. Our goal is to have professionals and parents learn the benefits of Early Intervention, even for children who it is believed “only have a delay in speech.”

If you would like to help by purchasing products that will help you and your child from our NEW fund-raising site, click here.

Cherab Foundation will continue to:

  • Provide information packets to families, healthcare providers and other community members.
  • Provide subsidized screenings for speech and language, as well as subsidized group therapy for the children.
  • Provide printing of pamphlets, posters and flyers to be sent to Speech and Language Pathologists, Occupational Therapists, Early Intervention Offices, schools and physician offices.
  • Provide monthly informative meetings with experts in the field of communication.
  • Provide seminars with experts in the field of apraxia.
  • Provide help globally to thousands more families.

This Is Why The Children Appreciate Support From The…

  • Shop-In-Service.com- A Free Service That Provides Both Personal And Corporate Assistance, As Well As Funedraising For Various Nonprofits. The following companies help us provide funds for Children’s Apraxia Network.
  • Alamo
  • Avis
  • FBI (Federal Bureau of Investigation)
  • Medicare Supply Company
  • National Car Rental

Special Thanks Also To:

Blimpies-1701 US Hwy No 22 Watchung, NJ (908) 322-3185 Chris, the owner, provided lunch for Inside Edition while they were busy filming about apraxia

Calabria II -1205 Valley Road Stirling NJ (908) 604-4746. The friendly owner, Teddy, also owns Cafe Main 40 Main Street, Millburn, NJ (973) 376-4444

Children’s Specialized Hospital– Among Many Other Wonderful Attributes, A Hospital That Generously Provides Their Beautiful Facility, And Optional Coffee Service As Well, To Host Various Support Groups, Including Ours

The Empire State Building-Special thanks to Chris for his kindness

The Grand Summit Hotel-They don’t want any public thanks, so privately we are letting you know this is one of the most gorgeous and wonderful places to stay

Inside Edition-Thanks to Stefanie, and the wonderful people she works with, for being perceptive enough to know a good (and important) story, while most others were still sleeping! (Alarm to go off sometime December, 2000) Inside Edition TV’s segment about apraxia, and Children’s Apraxia Network is scheduled to run December, 2000. However, since the show is on stand by right now, it has already been aired in various parts of the country. The producers don’t know when “stand by” shows will air, so please email us and let us know if you see the segment, or if you wish to be added to our email list for the scheduled air date in December.

Mars 2112– Khalid thought this was one of the coolest places to eat in New York

My Town Bakery Not Just One Of The Best Bakeries Around, But Also A Generous One As Well. 387 Park Ave. Scotch Plains, NJ 07076 (908) 322-1919

One If By Land– No public thanks, just 2 words-“Most Wonderful’

United National Bank– Special Thanks to Mr. Harris

$2,500 Or More Donations:

Summit Bank– A Caring Bank That Supports Many Organizations In The Community. Summit Bank Is Also A Sponsor Of The Free Community Connections Websites Through NJ.com, Where The Main Website For Children’s Apraxia Network Is Located. Because of this generous donation we were able to fly Khalid and his mom Cindy into NJ from New Mexico for our August Meeting of Children’s Apraxia Network.

$1,000 Or More Donations:

Linda Bunis Haller Foundation– A Non Profit That Helps Special Needs Children

The Greenzeig Family– In honor of Mike Greenzeig’s 45th Birthday, from the generous donations of family and friends.

We appreciate any donations sent to:
Cherab Foundation, Inc.
P.O. Box 8524
Port St. Lucie, Florida 34952-8524

Email Lisa Geng President, or leave a message at 772-335-5135

Mothers-to-Be, Children Should Avoid Fish High in Mercury

Women who are or may become pregnant shouldn’t eat shark, swordfish, king mackerel or tilefish because these fish may contain high levels of mercury that could harm unborn babies. FDA’s advice extends to nursing mothers and young children, too…

FDA ANNOUNCES ADVISORY ON METHYL MERCURY IN FISH
The Food and Drug Administration (FDA) is announcing its advice to pregnant women and women of childbearing age who may become pregnant on the hazard of consuming certain kinds of fish that may contain high levels of methyl mercury. The FDA is advising these women not to eat shark, swordfish, king mackerel, and tilefish. As a matter of prudent public health advice, the FDA is also recommending that nursing mothers and young children not eat these fish as well.

Fish such as shark, swordfish, king mackerel, and tilefish contain high levels of a form of mercury called methyl mercury that may harm an unborn baby’s developing nervous system. These long-lived, larger fish that feed on smaller fish accumulate the highest levels of methyl mercury and therefore pose the greatest risk to the unborn child. Mercury can occur naturally in the environment and it can be released into the air through industrial pollution and can get into both fresh and salt water.

The FDA advisory acknowledges that seafood can be an important part of a balanced diet for pregnant women and those of childbearing age who may become pregnant. FDA advises these women to select a variety of other kinds of fish — including shellfish, canned fish, smaller ocean fish or farm-raised fish — and that these women can safely eat 12 ounces per week of cooked fish. A typical serving size of fish is from 3 to 6 ounces.

The FDA’s Center for Food Safety and Applied Nutrition will launch a comprehensive education program to reach pregnant women and women of childbearing age who may become pregnant and their health care providers concerning the hazard posed by methyl mercury to the unborn child. As one of its priorities for fiscal year 2001, the Center will also develop our overall public health strategy for future regulation of methyl mercury in commercial seafood.

Today, EPA is also issuing advice on possible mercury contamination to women and children eating fish caught by family and friends (non-commercial fish). EPA particularly recommends that consumers check with their state or local health department for any additional advice on the safety of fish from nearby waters. Additional information is available on EPA’s Web site

Avoiding Mercury in Fish Supplements

At our January 2001 meeting, Dr. Kane talked about the need to avoid purchasing supplements that come from areas where fish are contaminated due to mercury poisoning. She also warned against having your child consume too much tuna fish for the same reason. However, we do need the healthy fish oils, and many of our waters are polluted with mercury, levels of which increase with the waters containing larger predatory fish, since they eat the smaller fish, who eat the smaller fish, etc.

Below is information from a 20/20 TV segment, during which medical (and other) authorities spoke about the issue of mercury poisoning and the link between mercury poisoning and neurological conditions, including language.

I would like to thank Dr. Kane for raising awareness about this at our meeting and thank 20/20 for raising awareness to the world, and possibly making it a safer place for the babies of the future.

Lisa Geng, President, Cherab Foundation

<a href=”http://www.fda.gov/bbs/topics/ANSWERS/2001/ANS01065.html”>FDA Announces Advisory on Methyl Mercury in Fish</a>
<a href=”/2005/mercury-levels-and-neurological-conditions”>20/20 TV segment: Mercury in Fish Threatens Unborn</a>
<a href=”/2003/autism-a-unique-type-of-mercury-poisoning”>Mercury Information From Autism Site (as it Relates to Apraxia)</a>
<a href=”/2006/mercury-contamination-a-critical-issue”>Mercury Contamination: A Critical Issue</a> from Dr. Stordy

PhD(MOM)?

by Lindsay Chase Wheaton

I am not an SLP, an OT, or a PhD. I am not a medical professional of any kind. I have never received any medical training or education. What I am is Mom to Quinn and Emma, and I wear this title with more pride than any I could possibly have received through years of intense training. My kids, are quite simply my greatest accomplishment, and I live now to see them achieve rather than to reach any further accomplishments of my own. Funny how perspectives on life change isn’t it?

I know my kids more intimately than anyone else in my life. I can tell what’s going on with them from an expression on their face, a body position, or a catch in their voices. I am in tune to them due to my emotional connection in a way that no clinical training or education could possibly duplicate. I am without a doubt, an expert on my children…. Therefore, going forward, may I please be referred to by title as Lindsay Wheaton, PhD(MOM)? Perhaps the people I have dealt with in the past who were trying to help my son Quinn would have taken me more seriously when I provided my input. After all… I am the expert in the field of “Quinn studies (with a double major in Emma studies!)” right?

To give you a taste of what I’m talking about, I’ve actually had professionals say straight out to me the following:

“Humor me…. He needs it”

This applied to a visual schedule as the individual felt since he was placed on the autism spectrum that he had difficulty with change to a daily routine. When I explained that I wanted to focus on another area of difficulty other than this because not only did he not have a problem with a change in routine, but in fact craved a shake up of things as he bored easily, I got this response.

“Apraxia? No… his lack of speech is just a characteristic of his autism”

This was offensive and contrary to everything I had learned on so many levels that I don’t have room to comment fully so won’t bother. I did however, comment to the individual who said it, alas, was not taken seriously.

“he could suffer from Anxiety Disorder or Obsessive Compulsive Disorder”

Brought on by Quinn constantly picking up a car and saying “caaa” when asked a question. I knew very well that Quinn couldn’t verbally answer due to the motor speech difficulty, and so was trying to communicate socially with the individual by delivering the only word he had that was intelligible at the time. He still does this to me…. If I ask him a question he’s having difficulty with, he changes the subject, however, so does my husband when I ask him a question he doesn’t want to deal with. “Buying time” could very well be a genetically predispositioned trait in the male side of our family…but I think not.

“Quinn has compliance issues and follows his own agenda”.

Ummm. Okay – true from your perspective, but just because he is bored with your standardized test and doesn’t want to do it anymore after he’s already sat patiently while you took history from me for an hour and a half doesn’t mean that not following your agenda is necessarily abnormal.

Can I please have my title now?

I’ve had good and bad scenarios in the past three years where I’ve been both dismissed as a mere parent, and where I’ve been embraced for my specific knowledge. Don’t get me wrong – I’ve got a lot of wonderful things to say about a lot of professionals that have come in and out of our lives and without them, Quinn wouldn’t be the success story he is today. Perhaps this makes the well meaning ones who dismissed me stand out more as a result.

I hope this article comes off more as a plea than a rant, as I am not attempting to disparage any of the professionals who have by way of their unquestionable expertise tried to help my son. I don’t feel anyone had any other agenda, and felt they were sincere in their perspective and in no way malicious. I just want to provide everyone with another perspective or interpretation to examine: What if we all worked as a team of experts to help the kids, where parent expertise was included and not discounted?

We’ve seen teams of experts, although for the most part on an individual basis. Expert A would refer to Expert B, who would refer to….well, you get the picture right? I think our most successful and most productive assessments or therapy situations happened when we actually had present at the same time, more than one expert putting their heads together and working as a team. The assessment that resulted in removing Quinn’s PDD-NOS label in June of 2001, was attended by a multi disciplinary team made up of representatives from Speech Language Pathology, Occupational Therapy, Developmental Psychology, and of course, my husband and I. Our private speech therapy consisted of a team effort as well, which was extremely successful. Either my husband or I attended therapy sessions with Quinn, and we took what we learned and applied it to every day as a form of home therapy. We should be accountable as experts as well – we need to be involved in the work and can’t just dump our kids on the professionals and say “fix them!” With that title, we must accept the responsibility!

Its amazing to me that we as parents know so much on subjects we may never have taken interest in prior to finding out they impacted our child. I can’t count the amount of books, articles, websites, studies, etc. I have devoured on the subject of motor speech disorders, autism spectrum disorders, treatment methods, and anything remotely associated with the subject. I’ve quizzed the experts to clarify issues I didn’t understand. I’m passionate on pursuing the knowledge because it directly impacts my son and his achievements – my whole life purpose after all! This is obviously more than just a passing hobby for our family. Can we at least be considered graduate students of a self study university on the subject?

I guess my point in all this is that we as parents value the opinion of professionals. We acknowledge their training, their educational experience, their clinical expertise. We need them and trust them and know they sincerely want to help, and have the unquestionable expertise to do so. Is it so crazy to ask that they do the same for us in the field of our expertise? Is it insane to welcome us aboard as part of the team, and be treated as such and no less? We want to play and could very well be the secret weapon to success – after all, if our goal is the same, which it is, combining forces would simply make us stronger. Let’s up our odds for the kids emerging as the winners shall we?

*Lindsay is a co-founder and active member of Canada’s Apraxia Support Group, ECHO – the Expressive Communication Help Organization.

Answers about ProEFA and history of how it came to be known

Nordic Natural’s ProEFA is the same thing as their Complete Omega Ultimate Omega with Borage Oil (it has to be that name -there are other Complete Omega’s that are not the Ultimate Omega)

ProEFA is the professional line which only used to be for sale to health care professionals -not parents direct. The Ultimate Omega line is the commercial line for parents, health food stores, etc. and the only difference between the two is the price.

When my son Tanner responded so amazingly well to Efalex just weeks after he was diagnosed with apraxia yet months after therapy with no results as you can read in The LCP Solution book or read under apraxia online, I had just started the Children’s Apraxia Network (August of 1999) and wanted to organize a feedback with our new group. Our first meeting in August I spoke with Nordic Naturals who offered to send us free samples of DHA Jr. (cod liver oil) for us to try -and I was crushed when nobody including Tanner had positive results with them. At that time I had thought all fish oil was the same.

After hearing more and more that it appeared to be only Efalex that worked for most of us with apraxic children, I had long discussions with Michele, the owner of Nordic Naturals and kept saying “There has to be something in Efalex that you don’t have in your DHA Jr. because Efalex works and DHA Jr. isn’t for some reasons for most of us.

I would have probably organized something with Efalex but they were in the UK at that time through Efamol and my phone bill was already starting to pile up with running the Children’s Apraxia Network -also I liked the Nordic Naturals company because I thought they were the only ones that were trying to make fish oil more appealing to children by making them into smaller strawberry flavored capsules that I wish worked. One day Michele called me and said “Lisa I have our version of Efalex which we think is better” So I again offered to do a feedback -but this time, after switching Tanner unsuccessfully from Efalex time after time I really didn’t want him to be part of it -but then I did try it for him because I was curious and within a week Tanner had a surge and got the letter K sound that we were working on for over a year -and within a month he started to tell stories for the first time -and on only one capsule a day as you can hear online!! (I have to update that page!!)

We arranged for Nordic Naturals to ship product to do the same feedback through the nonprofit ECHO of Canada with Rhonda, the President -(actually at that point I did it through the first nonprofit I founded -Children’s Apraxia Network) Both groups found the exact same results -little to no change with cod liver oil (we used DHA Jr.) and then for the same children -moderate to unbelievable dramatic changes within days to just one to three weeks in most cases -and this wasn’t a grouplist thing where people can post what they want without knowing each other. This was done through in Cherab’s case a support group where we all knew each other -and each other’s kids. We anecdotally found out two things -that children with diagnosed and undiagnosed apraxia had almost immediate changes on the ProEFA formula -and even more importantly we discovered that the formula is very important -and that fish oil alone doesn’t appear to be successful for our children for some reason, and that our children also required the small amount of Omega 6 -such as found in the ProEFA -or the Efalex or Eye Q formula’s for some reason -maybe due to the anti -inflammatory properties, perhaps they enable the Omega 3 to get to the small vessels of the brain somehow where they are needed?

Why is ProEFA now available to the parents? I don’t know if they really want it to be, however when Cherab did the feedback and due to the success we all wanted to keep using it. Because after the feedback the ProEFA supply was cut off to the parents and I said “You can’t do this to us!! You have to let us keep getting the ProEFA” Nordic Naturals let me distribute it through the Shop-in-Service, which at that time was the only way to get ProEFA if you were a parent outside of getting it from your doctor.

Even though we from the beginning got various media attention like Inside Edition TV, etc., we were this small grass roots support group/nonprofit yet wanted the world to know something that we knew would seem “fishy” to anyone on the outside. So I was put in touch with Robert Katz PhD, formally of the NIH who runs the Omega 3 Institute who offered to assist us organizing a professional anecdotal feedback -which he did for the few months he was with us. The reports were reviewed together by Robert Katz PhD and Andrew Zimmerman MD from Kennedy Krieger. Problem was we had asked for reports from pediatricians which is what Dr. Katz wanted -which is what most people sent in, and unfortunately most were promptly discarded when they were reviewed and the pediatricians were questioned over the phone, since the MD’s in most cases did not witness first hand the before and after -they filled in the reports based on the parent’s testimony. So therefore the only reports that were OK’d for the professional anecdotal feedback were those from the speech pathologists that worked with the children on a daily or almost daily basis -which were only 19 of the reports. So in our attempt to make a more credible report -which it was -we had a measly amount of patients which is so sad since as we know there are literally hundreds and hundreds of testimonies (as we had on our quilt of hope that we had at the First Apraxia Conference)

Well soon after the media noticed these 19 professional anecdotal reports as you can read online -which together with the continuing overwhelming amounts of parent testimonies-people all over that heard about it with any type of late talker child not just apraxic wanted to know -how do we get this fish oil? What is it? What is the dosage? Is there side effects? Does fish oil cause diarrhea, constipation or does it make a child regular if they are prone to constipation? (Once again a child prone to constipation can get constipation anytime -and I’ve asked experts in this area who say that fish oil will not constipate people, just the opposite -in most cases the addition of oil to a child’s diet may cause mild looser stools for a few days in a handful -not all, and it does appear to make children prone to constipation more regular -and without having to give them medications or reducing amounts -check with MD’s)

Anyway parents that were optimists and just knew it would work, and parents that were pessimists and didn’t think it would work, and those that weren’t sure -didn’t matter, almost all found that their late talker children when supplemented had the same positive results that you read about here. It took time for word to spread because it really does seem so simple and easy and cheap and hard to believe and so why doesn’t everyone know and just do this (I don’t know) and it gradually made it’s way to other grouplists, and into other disorders outside of apraxia. So the demand for ProEFA vs the Ultimate Omega Complete Omega with Borage Oil really grew since that’s the name everyone hears but they are the same except for ProEFA being a better price per capsule which most people don’t know. So Nordic Naturals began selling ProEFA direct to parents -and they also started letting other companies sell ProEFA to parents.

You can still ask your local drug store to purchase the Complete Omega Ultimate Omega with Borage Oil -and you can also make up the formula yourself by checking the amounts of DHA, EPA and GLA -I know parents that have done that successfully too -just make sure you use fish oil from reputable companies.

Advice for Starting a Support Group

Many parents find it overwhelming when they have a child that is a late-talker. Is there a problem? Who should we see – a doctor, a pediatrician, a speech pathologist? Are we over-reacting? Do others notice that our child is not talking? How many times have we heard: “Einstein didn’t talk until he was five years old”? Or how about “he will talk when he is ready…” or “she doesn’t need to talk, you give her everything she wants”. Often these comments are from well-meaning family and or friends, who have no idea of the impact their comments have on you and even your child.

It is validating and helpful to be with others who know how you feel, and who really “get it”. Speak to others in your area about where to go to get service, clinicians that have worked with children like yours, great and not so great programs and services. You can bounce ideas of each other, share information, and even give your kids the opportunity to have a playdate with other kids who are like them.

A support group can be a couple of parents meeting with their kids at the local MacDonald’s, a group of parents sitting around a kitchen table exchanging information and telephone numbers, or a more formal, regular meeting with a larger group of families and even guest speakers.

Interested in starting a group? Here are a few pointers…

  • Set up an email address where you can receive correspondence from interested people.
  • If possible, have a telephone number where people can reach you to get more information. Link to existing websites, like Speech-Express, to get your name out there for parents who may be looking for support in your area.
  • Pick a place to have your meetings, and keep it to that same place – that will make it easier for people, knowing that you always meet in the same place. A community centre, church basement, etc. — anything free.
  • Meeting frequency should be determined by your members – monthly, quarterly, whatever works best for all.
  • Consider forming an executive for your group, so that the responsibilities in the group are defined. Basically, a person to chair the meetings, and another to take notes. Assign a person to bring refreshments to the meeting — a box of donuts, a coffeemaker & a can of apple juice for the kids.
  • Setting an agenda is a good idea, just so people know what to expect. Poll the attendees at the end of the meeting to see what they would like on the agenda for the next meeting.
  • Will you allow parents to bring their children to the meeting? Will you have a babysitter, or will the children have to be watched by their parents?
  • Consider inviting guest speakers, perhaps your own SLP, a community worker, someone from your child’s school. The possibilities are endless!

Here are some more ideas from the Self Help SourceBook (online); a wonderful resource with some great suggestions.

“Think “Mutual-Help” From the Start
You do not have to start a group by yourself. There are others who share your problem.

Find a few others who share your interest by circulating a flyer or letter that specifically cites how if one is interested in “joining with others to help start” such a group, they can contact you. Include your first name, phone number, and any other relevant information. Make copies and post them at places you feel are appropriate, e.g., library, community center, clinic, or post office. Mail copies to key people whom you think would know others like yourself. You can also ask if the notice might be published in your local church bulletin and newspaper.

When, hopefully, you receive a response, discuss with the caller what their interests are and what you would like the group to do. Ask if they would be willing to share the responsibilities of organizing a group for a specific period of time. By involving several people in the initial work of the first meeting, they will model for newcomers what your self-help mutual aid group is all about: a cooperative effort.

Also, consider obtaining the assistance of any professionals who may be sensitive to your needs and willing to assist you in your efforts. Physicians, clergy, and social workers may be helpful in various ways, from providing meeting space to locating needed resources.

Publicize and Run your First Public Meeting

To reach potential members, consider where they might go to seek help.  Would they be seen by particular professionals or agencies? If the answer is yes, try contacting these professionals. Posting announcements in the community calendar section of a local newspaper, library or community center can be especially helpful. The key is to get the word out. The first meeting should be arranged so that there will be ample time for you and other core group members to describe your interest and work, while allowing others the opportunity to share their view of how they would like to see the group function. Identify common needs the group can address. Although you do not want to overload you new arrivals with information, you do want to stress the seriousness of you intent and the necessity of their participation. Make plans for the next meeting and consider having an opportunity for people to talk and socialize informally after the meeting.

For meetings consider the following:

Purpose: Establish the purpose of the group. Is the purpose clear? Groups often focus upon providing emotional support, practical information, education, and sometimes advocacy. Also determine any basic guidelines your group will have for meetings (to possibly ensure that group discussions are confidential, non-judgmental, and informative.

Membership: Who can attend meetings and who cannot? Do you want membership limited to those with the problem? Will there be membership dues? If so, how much?

Meeting Format: How will the meeting be structured? How much time will be devoted to business affairs, discussion time, planning future meetings, and socializing? What topics will be selected? Can guest speakers be invited? If the group grows too large, consider breaking down into smaller sub-groups of 7 to 12.

Roles and Responsibilities: Continue to share and delegate the work and responsibilities in the group. Who will be the phone contact for the group? Do you want officers? Consider additional roles members can play in making the group work. In asking for volunteers, it is sometimes easier to first ask the group what specific tasks they think would be helpful.

Phone Network: Many groups encourage the exchange of telephone numbers or an internal phone list to provide help to members between meetings. Ask your membership if they would like this arrangement.

Use of Professionals: Consider using professionals as advisors, consultants, or speakers to your groups, and as sources of continued referrals and information.

Projects: Always begin with small projects, then work your way up to more difficult tasks.

Stay in touch with the needs of your members. Periodically ask new members about their needs and what they think both they and the group can do to meet them. Similarly, be sure to avoid the pitfall of core group members possibly forming a clique.

Expect your group to experience “ups and downs” in terms of attendance and enthusiasm. It’s natural and should be expected. You may want to consider joining or forming an informal coalition of association of leaders from the same or similar groups, for your own periodic mutual support and the sharing of program ideas and successes.

Can I Give Fish Oil to My Baby?

From:  “Robert Katz, Ph.D.”
Date:  Thu Nov 22, 2001  11:24 am
Subject:  Re: nervous about 2nd child

Dear Kathie and Eileen,

The question is can EFAs be supplemented to younger children so that verbal apraxia/dyspraxia can be prevented?

The simple theoretical answer to this is a yes. Recently, the U.S. Food and Drug Administration approved the addition of 100 mg/day of DHA (Docosahexaenoic, an omega-3 EFA) and 100 mg/day of ARA (arachidonic acid, an omega-6 EFA) that is produced from GLA to
infant formula. The purpose is to make infant formulas more like breast milk. So, giving the content of one ProEFA to an eight months old would provide about the same amount of DHA and half the ARA. Since some of the linoleic acid from the borage oil will be transformed by body into ARA, the total ARA will be close to the 100 mg/day dose. The 140 mg of EPA will be welcomed by the body.

Recommendation: Since these are over the counter nutritional supplements the decision as to undertake this preventive pathway or not is ultimately yours. Nevertheless, please contact your pediatrician and share this information with him/her. I shall be
happy to answer your pediatrician’s questions on the above. I would like to hear from all those who want to try supplementing siblings with EFA for preventive purposes BEFORE STARTING THE SUPPLEMENTATION. It would be great if we could follow the changes in the supplemented sibling as they happen.

Best wishes and have a Happy Thanksgiving!

Robert Katz, Ph. D.
CHERAB Foundation