I knew that Inside Edition had done a piece on apraxia a few years back. I just stumbled onto the video. It’s on You Tube. Here’s the link.
I knew that Inside Edition had done a piece on apraxia a few years back. I just stumbled onto the video. It’s on You Tube. Here’s the link.
Hi Kris – I e-mailed you but don’t know if it got to you. I live in Ireland have been so excited since I have literally stumbled across your website at the weekend as I have been trying to work out a way to get to visit Dr Agin to have my son Barry asessed and wasn’t having much luck with an e-mail adress or phone number.I have a million questions – how did you contact her? Did you need a referal? Was it costly? What is the best way of going about it? I have read the wonderful book “The Late Talker”.
Our darling son Barry, the youngest of three, has speech and language issues. Barry is 3.5 years old. He has two older very chatty siblings,. He was a very quiet baby, very easygoing and had a traumatic few months from around 5 to 8 months with respiratory problems before being diagnosed with “probable asthma” at one year old.
I have been aware that something was not quite right since he was about 15 months old and he has been having speech therapy almost on a weekly basis since he was about 22 months. I didn’t notice feeding issues early on – he was a great breast feeder up to eight months. However he does have difficulty in chewing meat still and is also inclined to stuff food in almost as if he is not aware of how much is in his mouth. After reading the book we started him on fish oils and noticed an enormous improvement so we have been ordering the ones recommended on the Cherab website ever since.
We have no real diagnosis. We were told originally that he probably had verbal dyspraxia when he was about 2 years old. Then we were told by another speech therapist that he definetely didn’t. We finally got him assessed by a pediatrician, who said that he had a severe language disorder but otherwise was fine and to keep working with the speech therapist. We got him assessed for global dyspraxia by an occupational therapist, which we were told that he didn’t have. I asked about getting brain scans or other checks but was told that these were not necessary. Finally now a severe phonological disorder is being mentioned by his speech therapists, but verbal dyspraxia also remains on the table.
At the moment we are doing speech therapy every week with him and then we do some speech and language exercises everyday which he pretty much enjoys. We have noticed a huge improvement in him over the past few weeks with some sentences. However as the sentences get longer we understand less and less and it is really beginning to frustrate him. He has none of the soft sounds, and misses the end of lots of words. He also has some unusual sound substitutions which baffle the speech therapist – ie says L for both S and F – so song is long and football is lootball etc. His patterns are usually repetitive though I have noticed that he is also losing some words that he knew really well. The speech therapist that we attend privately is really excellent but we are very far behind in awareness here in Ireland.
Ireland, while now a very wealthy and progressive country, has a pretty appalling health service. No services are joined up and there are long waiting lists for everything. It is sad to say but everything that we have got for Barry I have had to fight for and in most cases pay a lot of money for. I am lucky that I am articulate and able to access services. I feel though that there is lots happening in the States that we are not aware of over here at all. I have tried to find someone similar to Dr Marilyn Agin in Europe, but there doesn’t seem to be anyone with her expertise or near to it here. Obviously if there was it would make sense to try and see someone close to home. There was a place in England called the Nuffield Centre but is is underfunded, seems very old fashioned and doesn’t really impress me at the moment.
So if you were able to send me contact details for Dr Agin or her secretary, I could find out how we could go about getting an assessment for Barry. We could bring him to New York to see her if that was possible. Alternatively it might be possible to do something using internet technology? I wonder does she do that.
Any advice you could give me would be hugely appreciated. On this journey I have often found that it is the kindness of strangers that have helped me keep going! Really looking forward to hearing from you.
Warmest regards and thanks
Niamh
PS Apologies for the long comment. Felt a realy comfort level with you when I scanned the 100 facts about you! We have lots in common – I too worked in Central America, am Irish and love Fiestaware!
If you want to learn more about speech disorders and delays like apraxia you may want to read The Late Talker book, join the CHERAB online group list and visit the CHERAB website http://www.cherab.org or even join us at Facebook http://www.facebook.com/group.php?gid=1150297 35601.
Without going into details here in my opinion no parent should use the product speakk from pharmaomega speechnutrients.com unless it’s under a doctor’s supervision. Our group had a number of severe and alarming side effects reported by parents who put their children on this product. Please check with your doctor about the risks of hypervitaminosis E or K after learning about the dosage they put in speak.
I wish someone told me what I’m telling all of you prior to putting my own 12 year old, 5 foot 6 inch tall son on speak for just 2 weeks. It has been 4 months and he is just starting to be back to where he was pre “speak” He regressed back to groping- couldn’t talk. We had to teach him again how to say even simple sounds like “b” and “t” -sounds he had down in his motor memory since 3!
For almost 10 years our group has had great results with fish oils, dosage, formula and quality does matter but remember -mother nature knows best.
If you want more info please email me at lisa@cherab.org
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Lisa Geng
President CHERAB Foundation
Communication Help, Education, Research, Apraxia Base
http://www.cherab.org
Co Founder Speechville
772-335-5135
“Help give our cherubs a smile and a voice”
FYI… Lisa’s comment above was in relation to a comment that mentioned a specific product. After Lisa contacted me I realized the comment was possibly spam and I deleted it. So… Lisa’s comment isn’t ” out of left field”, it was based on a deleted comment. I did want to leave Lisa’s response here because it provides some valuable information and if you haven’t read The Late Talker…. get a copy. It is a great resource.
Nie znajdziesz lepszego miejsca na romantyczny weekend w Bieszczadach. Nasz luksusowy domek zapewni Wam niezapomniane chwile we dwoje.