Re: Introduction - New member

[Guest guest]

Hi Lori,

Welcome and Nice to have you join our group!

I know where Willoughby is, that is about 25-30 min from my home off of 271n.

that is also close from Shaker and University Heights too.

What county will you be in? I'm Not sure which one that is for Willoughby.

This is so neat. We have Becky who is moving in from California to our group too.

Well, gosh..I hope the girls will write to you in our group!

Talk to you again soon,

n

lorikcrow@... writes:

My husband has just taken a job in Willoughby, so we will be relocating from Florida and need to find the best place to live for our children (Matt, 13yo with autism, and Nick, 11 yo ADD and gifted) and isn't too far a commute for my husband.

I got some recommendations from the Autism Ohio group for Shaker Heights and Lakewood. Any other thoughts or shared experiences would be helpful.

I am really nervous about this move. I grew up in Southern California and moved to Florida about 14 years ago, so I do not own a coat and have only visited snow once.

Thanks!

Lori C

[Guest guest]

Hi Helen!

Other than the neurologist and SLP what other professionals work with

your son? Typically an occupational therapist can help as well as

there's much to say in motion stimulating speech...plus even though

you say he doesn't have sensory issues he's still pretty young. In

most cases in our apraxic children certain symptoms can be mild -and

easy for the child to push themselves through. It's as they age and

more is expected of them that they may break down which is why you

want to make sure that he's evaluated by a number of professionals

knowledgeable about apraxia earlier.

Also your son has RSS, I know from my older son when there is

a major issue - that's the major focus -so apraxia may not right now be

the focus. Apraxia is probably still in the shadow of RSS.

Also, about his rare disorder- I read a few things about the Fox P2 gene

and it's connection to your son's disorder. Has your son been to a

geneticist? Fox P2 may be connected to apraxia/dyspraxia/RSS. Here's

just one article:

Am J Hum Genet. 2006 November; 79(5): 965–972.

Published online 2006 September 27. PMCID: PMC1698557

Copyright © 2006 by The American Society of Human Genetics. All

rights reserved.

Absence of a Paternally Inherited FOXP2 Gene in Developmental Verbal

Dyspraxia

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1698557

I highly recommend just sticking to fish oils to start. You want a

formula that is higher in EPA than DHA with a small amount of GLA.

Fish oils also contain vitamin E for 2 reasons -to stabalize the oils

and also because supplementation of fish oils depletes the vitamin

E. The three brands we've found the most success here with over the

years are ProEFA, Efalex, and EyeQ. More info here:

http://www.cherab.org/information/indexinformation.html#diet

Also as far as reasons for not talking yet -here's an article that

just came out that I think is pretty good at covering the gamut of

reasons:

Sunday December 7, 2008

Silence isn't always golden

By WOO PEI JUN

Speech and language development is an important area in your child's

total development.

THE development of speech and language skills begins in infancy, even

before your child uses his or her first word.

This development progresses gradually as your child grows, making

noises as an infant, to picking up new words by the time your child

is two.

Speech and language problems can cause your child's development to be

affected in terms of behaviour, social and academic skills. Thus, it

is important to detect the cause of the problem early.

Common speech and language disorders

Speech and language problems can be divided into three categories:

structural, neural and other related problems.

Structural

Cleft palate speech disorder

This refers to children who are born with a cleft palate, as it is

common for children with this condition to have speech problems at

some point in their lives. Symptoms include: inability to make

certain sounds; sounding as if he or she is " talking through their

noses " ; making grunting or growling sounds

Articulation disorders

These disorders are speech sound errors that do not change in

different word contexts. Symptoms include: an obvious lisp; weak

articulation of certain sounds beginning with the letters R, J, L and

S such as " labbit " for rabbit.

Neural

Apraxia

Apraxia affects your child's ability to plan, execute and sequence

the movements of the mouth necessary for intelligible speech.

Symptoms include: limited babbling as an infant; few or no words when

other babies are talking by age two; poor ability to imitate sounds

and words; substituting vowel and consonant sounds in words.

Development language delay

With this disorder, your child has difficulty learning or retrieving

new words and putting sentences together. Symptoms include:

difficulty learning verb tenses; difficulty learning word classes;

difficulty learning new words and using grammar properly.

Dysarthria

A neurological speech disorder that affects a child's muscle tone,

making his speech sound slurred. Symptoms include: weak vocal

quality; rapid or slow speaking rate; generally weak, mushy, garbled

and imprecise speech.

Stuttering

Your child repeats individual speech sounds, usually at the beginning

of words or phrases. Symptoms include: your child developing a

stutter when moving from using single words and short phrases to

longer sentences or when they are under pressure to speak.

Other related problems

There are also other related issues when it comes to speech and

language skills problems.

Shyness

Some children are naturally shy and therefore do not do much talking,

especially in the presence of a crowd. Symptoms include: not speaking

at all unless necessary; reclusive and quiet; when speaking, speaks

with a quiet voice; concerns from teachers who claim your child is

not speaking at all.

Hearing

Having problems listening will give your child problems talking. As

both senses are related, most often times someone who is deaf is also

mute. Symptoms include: not forming words properly; keeps to oneself;

not being able to make a full sentence properly.

What you can do

The earlier a child's speech and language problems are identified and

treated, the less likely the problem will persist or become worse.

Early evaluation by a speech therapist is crucial.

As a parent, here are some general tips you can try at home:

·Spend time communicating with your child, even during infancy.

Encourage imitation of sounds and gestures.

·Read to your child. Look for age-appropriate books that encourage

your child to look and learn.

·Use everyday situations to reinforce your child's speech and

language abilities. For example, you can point out objects around the

house and name them to help your child pick up some vocabulary and

speech ability. Keep it simple.

·Baby talk at the appropriate age. It's alright to baby talk if the

child is about six months to 1½ to two years as this is the level of

comprehension of language. After that, speak to the child normally,

with proper speech and words.

Speech and language development milestones

·Squeal – four months

·Make cooing noises – 5½ months

·Say " dada " and " mama " to anyone – 10 months

·Say " dada " and " mama " to parents – 13 months

·Start to learn single words – 18 months

·Put two words together – 27 months

·Knows own name – 42 months

·Talk in full sentences – 42 months

·Name a colour – 45 months

·Define seven words – 60 months

> Woo Pei Jun is a developmental psychologist. This article is

courtesy of the Malaysian Paediatric Association for the Positive

Parenting Programme. For further information, please visit

www.mypositiveparenting.org. The information provided is for

educational purposes only and should not be considered as medical

advice. The Star does not give any warranty on accuracy,

completeness, functionality, usefulness or other assurances as to the

content appearing in this column. The Star disclaims all

responsibility for any losses, damage to property or personal injury

suffered directly or indirectly from reliance on such information.

http://thestar.com.my/health/story.asp?file=/2008/12/7/health/2711664 & sec=health

=====

[Guest guest]

If you can get a metabolic neuro, a geneticist and a

gastroenterologist familiar with RSS who has a nutritionist on staff

I think you will get the help you need. One goal, I would think,

would be pH stabilization so the acids can do no extra harm and the

gut can repair as much as it can given genetic predisposition. 50% is

excellent...the goal to reach for avoiding malabsorption. Awesome.

HTH,

Liz

>

> Hello everyone,

>

> I just joined the group after reading " The Late Talker " book. Our

son

> Sam has been recently diagnosed with verbal apraxia. He was adopted

at

> 18 months, very malnourished, and his diagnosis of RSS (

Silver

> Syndrome) was confirmed once we came home with him. This is a very

rare

> genetic condition where a child's acid reflux is so strong and

painful

> that it prevents him from eating, and so these children become very

> small and malnourished, their muscles are weak and growth slowed

down.

>

> Sam made a lot of progress, he is currently at 50% in height and

weight

> (at adoption, he was well below the chart area). But he is still

speech

> delayed. His hearing and vocabulary improved greatly after his

> tonsillectomy and ear tubes, but he still does not form sentences.

He

> is not autistic at all, on the contrary, he is a very communicative

guy

> and loves attention. He is now 3.5 years old. He does not have any

> serious sensory issues now. We thought for a while that his speech

> delays were caused by weak mouth muscles, but now I wonder if

there's

> more to this story.

>

> My question is, how did you establish the nutritional intervention

> regimen (fish oils, etc.)? What kind of doctor should we consult?

Or

> was it just trial and error?

>

> Sorry for the long message, and thank you in advance for your

response.

>

> Regards,

> Helen

>