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The Late Talker

Read more about The Late Talker, a new book for families of children who are late to talk.

Thanks For All Of The Big PeopleWho Help The Little Children

Many parents and professionals travel from 1to 3 hours one way to attend the once a month meetings. That's 2 to 6 hours in the car all together! People regularly attend our meetings from NY, NJ, PA, and CT, not just because we are such a great group, but because we are one of the only nonprofit or support apraxia groups in the entire world. We are sure that will change as awareness is raised about apraxia. In the meantime, and always, we welcome anyone who wishes to learn more about how to help the child they care for who has apraxia.

From A Mom Who Is Also A Nurse:

"I just wanted to write to share my experience with the hope it may help other parents with "late talking" children and raise awareness regarding verbal and oral apraxia. I am a registered nurse and therefore am trained and skilled to perform medical assessments. Of course, I am always first a mom when it comes to my kids, but my professional background as well as my mom gut instincts led me to be concerned that Justin's speech was not developing appropriately as early as when he was just six months old. I repeatedly shared my concerns with the pediatrician that he sounded different than other kids, did not babble repeated consonants with vowels, had difficulties with straws and drooled excessively with an open mouth posture. I was repeatedly told that "boys talk late...don't worry...he's fine."

Finally, when Justin was eighteen months, I disregarded my pediatrician's advice to wait until he was two and a half(!) and contacted early intervention myself. We began speech therapy at 20 months but I knew instinctively that this traditional speech approach just wasn't enough...wasn't exactly what my son needed.

A few months into Justin's therapy a friend of mine coincidentally attended your Apraxia Support group. Her child is not apraxic, however, when she shared the information she received at your meeting I was shocked. I told my friend, my husband and my parents that I really felt Justin might have apraxia. I immediately addressed this with our fairly inexperienced speech therapist who at this point had been working with Justin for six months. She acknowledged that it was a possibility, yet unlikely, and that if he was apraxic it was mild. Despite this acknowledgement, the therapy approach did not change and as you well know, conventional treatment does not work as well with apraxic kids. I began researching apraxia myself and thanks to you and your web site this was easy!

Out of sheer frustration, I asked my pediatrician for a referral to a neurologist for a medical diagnosis of Justin's speech issues. Well, without surprise, the neurologist as well as his speech therapist agreed that my son has both oral and verbal apraxia. As much as this is upsetting and disturbing there was also a sense of relief as I now know that with proper treatment begun early, Justin can definitely become an effective verbal communicator. Justin is only twenty seven months now and I am working on coordinating a program for him including lots of oral motor work, O.T., P.T. and nutritional changes including supplementing with essential fatty acids. Although he is still very young, I do however wish that there was more awareness regarding apraxia so that we could have started the right therapy even earlier to give him the very best chance possible.

Thank you for all of your hard work which ultimately will help our kids and I look very forward to seeing you at the Monday evening support group. It is no surprise to me that people, including my husband and I, are willing to drive across state lines to come to the meeting. It is such a wonderful opportunity to get the latest information in order to give our kids with oral apraxia a smile and with verbal apraxia a voice!"

Cindy Woods, NY

For My Family, For My Child...

"-As far as my commute is concerned, as I live 70+ miles away in Fairfield, CT, and have to enter NJ via I-95 SB and the George Washington Bridge [alternative routes wanted], it is murder. With no traffic, [such as on the return home] it takes 1 1/2 - 1 3/4 hours. On the outward journey from CT to NJ, however, it takes a good 2 1/2 hours - and that's only if I leave my house by 4:00pm and drive like a complete nutter.

Why put myself through this torture? Simply because I learn so much from the guest presenters and fellow parents. More importantly, it's extremely reassuring and comforting to know that there are other parents who are experiencing the same agonies, fears and anxieties that we are and, as a result, they understand what we're going through. Friends of ours with - for want of better word - "normal" kids, say they understand but [and this is no fault of their own, of course] they quite simply don't. How could they? So in a nutshell, I endure 2.5 hours of highway-inflicted misery once per month to simply learn and seek support. It's no more complicated than that. That's it from me, I look forward to seeing y'all next month.

Cheers,
David

=====
Email: d_parkes@yahoo.com [Home]
dparkes@us.ibm.com [Work]

Philippe's Story

My son (Philippe) is 4 years old and I have been going around in circles with all kinds of people in the medical field with him. I have even changed neurologists and travel a far distance to see another neurologist. I have appointments lined up still with developmental specialist, genetic specialists and other specialists still to come. I just started with a new speech therapist for the 4th time and I feel like I have just started getting somewhere.

This has been a long and frustrating ride. My sons new speech therapist told me to look up dysarthna and dyspraxia. I have never heard any of these words from any of the pediatricians, neurologists, speech therapists and other specialists I have dealt with before. I found nothing on dysarthna, but as soon as I started to read about dyspraxia and developmental apraxia of speech I felt like crying and doing a cheering dance all at the same time because for the first time in my sons 4 years of life, I feel like finally I am beginning to know something. Everything I read sounds exactly like my son Philippe. Thank You Thank You Thank You for supplying all this information. As I kept reading through all the material, I thought, finally, that explains everything.

See my son was born fine. His development for 4 or 5 months was normal. I have two other kids who are in gifted programs and learned things very easily. One started reading at age 3 and the other at age 4. Their ability to learn things quickly and to maintain it all was amazing. All of Philippe's development was right on target with my other two kids until he got his second DPT shot. He was 4 or 5 months old ( I can't remember the exact date without looking it up anymore) when he received the DPT shot and he started having seizures within that week. All his development up to that point was gone. He just laid in one spot without making any attempt to move around like he was prior to the shot, and he had no expression in his face most of the time. I was nursing him at that time and he had not had anything new introduced in his life other than that shot. We didn't try any new foods, juices or clothes on him at that time. I had not eaten anything different or had not taken him anywhere new or different other than what he was already used to. So I know his seizures had something to do with his DPT shot. The pediatrician immediately took him off the Pertusis shot. The neurologists do not want to say it could have been the shot. They are telling me that they have no idea what could be causing his delay.

Of course we have had every test know to them preformed on my son. - Another strange thing that happened to my son during his time with seizures is that after having his first seizure, he started sucking his thumb. He started out with silent seizures and staring spells, then it developed into grand-mal seizures. After his second grand-mal seizure, he stopped sucking his thumb. The neurologists have no explanations at all about that one. All they say is that the seizures probably triggered something in the brain to start and then triggered it later to stop the thumb sucking.

- Our insurance is not paying for speech therapy because the doctors labeled him as Developmentally Delayed because they told me that is what they have to say when they can't figure out exactly what is wrong with him.

I did not mean to make this letter long, I just want to say thank you again for your personal story and all the information you made available. I have to admit, I was holding up well reading through all of this information, buy when it came to the early warning signs of Oral Apraxia, I had a melt down. I could not hold back my tears because on the part where it asks " Can your child do the following regularly, or on command..." I answered no on almost all of them. And on the part where it asks " does your child...." I answered yes on all except one.

-(My son) does get a little speech therapy in the school that he attends for his needs, but the speech therapist is there in class one day a week and does the therapy for 10 kids. To me that was NEVER enough, so we got a private speech therapist which the school told us it was unnecessary.* He is 4 and he is still not very understandable in his speech. He still displays a very lazy mouth. He still has that baby drooping of his muscles at his cheeks and chin. The speech therapists says it is because he doesn't use his muscles to the fullest capacity when making sounds. He has come a long way with the exercises we do from the speech therapist. Thank God he does not over stuff his mouth the way he used to. He still does not lick the food off his lips all the way, He still uses his fingers to do that. -

This is my first day ( and I have been online with this ever since 8:00 a.m. and it is now 4:38 p.m. with a 2 hour break in-between there to run to my sons speech therapist) reading through all this information, and I am going to make an appointment with my son's ( Philippe) pediatrician to share this information with him and to find out how we can further pursue finding out if in fact this is what my son has.

My speech therapist is the one who called this to my attention and told me that she really thinks Apraxia is what my son may have. -I think he is improving, but I sure would like to see him get all the help he needs to develop into an independent adult. -

This has been a lonely and long road. Thank You again for sharing your story and information with us. -Please feel free to post my e-mail with my e-mail address attached to the testimonies page. I am welcoming any and all information I can get. If anyone has information for me, please feel free to e-mail me.

Lynette Illinois

* Severity Intervention Matrix
Seek private evaluations from an ASHA certified SLP (Speech Language Pathologist) as well as medical evaluations from a neurologist and a developmental pediatrician who are knowledgeable about apraxia as well as other disorders. Bring these evaluations to your child's school with the guideline at this link. American Speech and Language Association National Guidelines for the Roles and Responsibilities of the School-Based SLP (Other great information here as well)
ASHA

Another Parent Helped By The Newspaper Article

Dear Lisa,

My husband and I will be attending the Sept. meeting. I am so thankful for your article in the Star Ledger Newspaper a few months ago. My son is working with Lori Roth and we love her, and we owe your website and articles. Thank you.

-Our son Nicholas, now age 2, says, "moo, dada, opba ( for open), I see it, tick tock" and a few sounds. He wasn't making really any sounds until he started seeing Lori in July of this year. We are very proud of him.

Christine Bond

For The Twins

Lisa -
Thank you for responding, because of your website I am very confident in choosing the best developmental Ped. Dr. Agin is moving into a new location but called me at home to tell me she would like to see my boys in early Sept. I am looking forwarding to meeting her and I will keep in touch with you. THANK YOU!!!!
Joya

WWW.thanktheweb.com

Thanks Lisa - you are truly a wonderful person for taking the time to help me out and for setting up such a wonderful website - I can't tell you how much it means to me having some support from people like you and others I've met on the net.

I think I'll start with two caps of Efalex with Renee and see how it goes. In the meantime, I have been checking out the sites you mentioned and links to other websites. Sometimes I just don't have the time to spend on the computer I would like and I feel guilty if I'm on here and not spending time with my daughter.

I have found a Prompt therapist about an hour away from us so I'm waiting on a call back from her - I hoping with maybe starting the EFAs and trying Prompt therapy we will see some improvement in Renee's speech therapy. It's been an emotional roller coast ride!

Well anyway thanks again! Take care and God Bless ( you can put in the "Thanks" section with my e-mail address)

Again, I really appreciate all your help.

Ruth

Newly Diagnosed

I have a two year old daughter who was just diagnosed with verbal apraxia. I was comforted to find (your nonprofit support group) and would love to get involved in network. Are you aware of any in the Philadelphia area? I live in Montgomery county and work in Philadelphia and am just trying to piece together some services for my daughter and found your website and Apraxia Kids extremely helpful. If you are aware of any support groups in my area that I can get involved in, I would love to hear about them.* Any advice greatly appreciated. Thanks for the site.

Linda

* Mauri Blefeld is starting a apraxia support group in the Philadelphia area. Please email Mauri for more information.

Cherab Foundation

657 Valley Road Box 339 Gillette, NJ 07933

Email Lisa Geng President, or leave a message at 732-871-6013

Click Here For This Month's Meeting Information

The Cherab Foundation is a world-wide nonprofit organization working to improve the communication skills and education of all children with speech and language delays and disorders. Our area of emphasis is verbal and oral apraxia, severe neurologically-based speech and language disorders that hinder children's ability to speak.

The Foundation is committed to assisting with the development of new therapeutic approaches, preventions and cures to neurologically-based speech disorders. We bring together parents and medical, research, and educational professionals. Please join us and help to give our children a smile and a voice.

Join the Cherab Foundation's free support discussion list

Cherab Foundation
Communication Help, Education, Research, Apraxia Base
P.O. Box 8524
PSL, Florida 34952-8524
Phone: 772-335-5135

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Last Update: February 19, 2003