Response to LISA from MUSICMAKER

[Guest guest]

Sorry it has taken me so long to respond to your post..life is crazy as

usual ..but better late than never!   I posted my responses in blue

so it will be easier for you to skim through the post and see my new

responses. Thanks!

>

> >

> > I'm going to go through each point you brought up:

> > " -She never babbled at all as an infant..began to babble a little

> bit

> > around 1 1/2 years old and mostly even now calls everything ba ba ba

> > over and over..she does point to things and will lead you to what

> she

> > wants "

> >

> > The lack of babble is a sign of concern. The pointing and attempts

> > to communicate tell me there's the possibility that her receptive

> > ability was above her expressive which also points to a disorder vs

> > delay. But those signs in themselves wouldn't mean apraxia.

I agree..her receptive and expressive language was just tested yesterday

by our SLP so it will be interesting to see what the results are

> >

> > " -Hearing tested fine "

> > Great!          Yep

> >

> > '-The only words she says are mama and baby (sounds like bebe like

> she

> > is speaking Spanish..which she isn't) "

> >

> > No progression of building on words she already knows- using the

> same

> > word for different meanings is a red flag.

I had read that it was but the neuro doesn't seem to think so..but I

already know we need to find a new one or at least bring the one we have

up to speed with the signs of apraxia in children

> >

> > " -I have heard her say clearly each of the following words

> once..fire,

> > fish, bubble and red..but only one time for each word and never said

> > it again:

> >

> > To say a word or do an action once and not being able to say or do

> it

> > again is a classic sign of apraxia.

Thank you for your confirmation of this.  From all I have read about

speech delays and disorders,  this was the one thing that originally

led me to suggest to the SLP that my daughter might have apraxia

> >

> > " -She will not repeat the two words that she does know when asked to

> > repeat or imitate them but she will repeat some sounds like ba and

> > the letter sounds for k and g and m "

> >

> > Not being able to perform on command is another classic sign of

> > apraxia. It has nothing to do with not wanting to do it -it has to

> > do with not being able to. The " b " sound I suspect is in her " motor

> > memory and besides like the sound of the letter " m " it's a frontal

> > sound which comes easier to most apraxic children. If she does have

> > apraxia you are fortionate that she already has the " K " and " G "

> sound

> > down as many of our kids have trouble with those sounds.

could you please explain..what is " motor memory " ?  thank you

Also your post made me realize that I was wording things in a pretty

negative way when speaking about her especially in front of her. 

Your comment made me have a " llight bulb moment " I am going to try to do

better about not saying that she " won't " do something and word it more

correctly by using " can't or isn't able to "   Thank you!!

> >

> > " -she won't repeat any vowel sounds but she does use the long e and

> > the short o and u and a when she is babbling "

> >

> > Again it may not be that she " won't " but that she can't repeat the

> > vowel sounds. Apraxia is a strange condition where you can say a

> > vowel after a certain consonant but not after another. Where you

> can

> > say a sound when it's after or before another sound but not in

> > isolation. If it doesn't make sense -that's apraxia.

Well her speech patterns sure don't make sense..the SLP commented on the

fact that she is able to say some consonant sounds that are considered

more difficult while not being able to produce consonant sounds that are

considered fairly easy.  One question I have is that from things I

have read, it seems that many children with apraxia speak only in

vowels...so does the fact that my daughter produces mainly consonant

sounds mean anything in relation to the theory that she has apraxia? 

> >

> > " -since she has began working with the SLP (about 8 months ago) she

> is

> > showing improvement..mainly in that she is babbling more and trying

> > to talk and is repeating the consonant sounds and is signing "

> >

> > Excellent -she should be in a preschool special needs placement as

> > well. Is she? If she has an IEP what are her goals? Did you share

> > the book The Late Talker with your child's neurologist. Perhaps

> > since you are out in the boonies you can bring the boonies up to

> > speed? It's important to work hand in hand with a

> neurodevelopmental

> > medical doctor as many children with apraxia also have " soft signs "

> > http://www.cherab.org/information/speechlanguage/

> parentfriendlysoftsigns.html

I had her in a preschool that would have offered in house therapy 2x a

week @ 30 min each session but I had some safety concerns with the

school so I ended up pulling her out.  Unfortunately that is the only

school anywhere near me that offers services for such a young child. 

Next year she will be able to begin a program in the public school

system (I think it is called head start?) She does have an IEP for

speech..still waiting for them to add OT and PT..but it should be

soon.  Her IEP measurable annual goal is to produce CV, VC sullables

w/ 50% accuracy by 9/09.  It says on the IEP that her short term

objectives are to 1. Produce sounds in isolation vc & cv syllables

(reduplicated and variegated) and 2. produce oral motor movements

volitionally on command.

So..for now I drive her to all of her sessions..she is able to get 3

half hour sessions a wk through our insurance but the SLP is only able

to actually see her 2 times a week since we had planned to have the SLP

come to see her in the preschool and our slots for sessions were already

filled when I quit taking her to the school.  I guess I am lucky that

there was still room to see her those 2 times.  She also has a 1 hr

session at another place through her IEP.  She gets OT 2x a week

through insurance and will be getting more OT through the IEP once we

have the next IEP meeting.  She will be starting PT through insurance

next month and PT through IEP after the meeting. I have not shared the

book The Late Talker with our neuro.  I am in the process of

reading it now. I have not been able to find a neurodevelopmental Dr in

my area yet.  I joined the FL support group for apraxia and am hoping

to be able to find a specialist through that group (fingers

crossed!)  my daughter does have alot of the soft signs form your

article. She can't lick things off her lips. She can't blow other than

through a straw, she can't imitate funny faces other than squinting one

eye shut, she has hypotonia with good muscle strength, I am not sure

what you mean when you say they look like a cherub..I will try to figure

out how to post a photo of her and maybe you can advise me on this, For

the life of me..I can't think of how she usually sits LOL  my mind is

losing it!  She isn't able to walk for too long either. She does have

SI in the form of mouthing everything and eating inappropriate things.

She rarely cries for things like getting blood drawn or when she takes a

hard fall..was considered a perfect baby since she never cried for

anything...wish I would have thought to wonder why she never

cried...many her actions definitely look forced.  That article was so

helpful.  

>

> >

> > " -when asked to repeat something she moves her mouth like she is

> > trying to comply but can't quite get it "

> >

> > Groping -don't remind me but that's one of the first signs of

> > apraxia -typically found in preschool children.

I am going to print all of this out along with the other info you linked

to to bring to my pediatrician and to fax to my neuro.

> >

> > " -she doesn't pucker her mouth to kiss but she can suck and blow

> > through a straw but won't blow without a straw in her mouth

> > -she can stick her tongue out sometimes but won't usually do this

> > -she can blow raspberries make other noises using her tongue like

> > clucking (not sure how to describe it..sorry)

> > _she has chewing and swallowing difficulties although these are

> > showing some significant improvement

> > -she still puts everything in her mouth all the time like an infant

> > would and eats innapropriate things like soap and paper and such "

> >

> > All of these can be signs of oral motor issues which can be due to

> > motor planning, weakness. Probably she should be evaluated by an

> > oral motor SLP for oral apraxia as well as verbal.

> > http://www.cherab.org/information/speechlanguage/oralapraxia.html

I am not sure if our SLP can do this but I am going to ask her and if

she can't then find someone who can

> >

> > I can comment on more but have to run out so just going through

> these

> > quick but in a nutshell there are developmental stages your daughter

> > probably missed that she's going through now. As they say better

> > late than never.

> >

> > " -her receptive skills seem slighly delayed but overall seem ok..we

> > have been signing with her and she has picked that up pretty quickly

> > and will sign for things she wants "

> >

> > Oooh you don't want to go there with your 3 year old who may have

> > apraxia. Please give her the benefit of the doubt that she has lots

> > on her plate she's dealing with and there are many things she wants

> > to do but just can't yet and needs to be taught how. Self esteem is

> > so precious and if you give up on her who else will believe in her?

I was confused by your reply on this one.  It seems as if you don't

think we should be signing with her?  From what I can see (and please

let me know if you think that I am not looking at it in the right way)

her signing has lessened her frustration at not being able to let us

know what she wants and in turn her verbal has increased..the number of

consonants increased and also the amount of time she makes sounds...in

theory I am thinking that instead of spending so much time trying to

figure out how to get us to understand her she is now spending that time

on trying to figure out how to produce new sounds...For her, I think the

signing has improved her self esteem in that now she is a little more

independent.  Please let me know your thoughts on signing since I do

value your opinion based on your response to my post. Thank you!

> >

> > " -she also has low muscle tone and is in OT and PT "

> > Hypotonia -see soft signs of apraxia above.

> >

> > Based on what you wrote yes it sounds like she has apraxia.

> > Here's a cut and paste from one new member archive with a bit more

> > info -hope this helps to start!

> >

> > To answer any questions you may have about taking your child to see

> a

> > neurodevelopmental MD if he has not yet been to one and apraxia is

> > suspected... in one word - " Yes!!! " I would have your child diagnosed

> > (private) by a neurodevelopmental medical doctor (developmental

> > pediatrician or pediatric neurologist) who is knowledgeable about

> > apraxia and other neurologically based multi-faceted communication

> > impairments for numerous reasons. Reasons include (but not limited

> > to)

> >

> > *having a " hero " on the outside of the school who can assist in a

> > therapeutic plan and oversee your child's development over the years

> > *advocacy support with the insurance company

> > * ruling out or confirming any neurological soft signs or any other

> > reasons for the delay in speech

> > *help those that ask " why isn't he talking yet " understand this is a

> > medical condition -and has nothing to do with your child's cognitive

> > ability. (if in your child's case it doesn't. Apraxia in itself

> > does not affect a child's cognitive ability -and speaking early or

> > late is no indication of a child's intelligence. Also contrary to

> > popular belief -most who have speech impairments have average to

> > above average intelligence)

> >

> > Here's an article written by Neurodevelopmental Pediatrician Dr.

> > Marilyn Agin that was featured as a cover article in Contemporary

> > Pediatrics -a trade magazine for hundreds of thousands of pediatric

> > medical professionals across the US. (I wrote the parent guide)

> >

> > " The " late talker " -when silence isn't golden

> > Not all children with delayed speech are " little Einsteins " or

> garden

> > variety " late bloomers. " Some have a speech-language disorder that

> > will persist unless warning signs are recognized and intervention

> > comes early. Includes a Guide for Parents. "

> >

> > Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

> > http://contemporarypediatrics.modernmedicine.com/radio_peds4

> >

> > Actual article (where you can read it for free)

> >

> > http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

> > or

> > http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

> >

> > My parent guide still works (for free)

> >

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

004/136315/article.pdf

> >

> > I would also have at least one private " out of pocket " (if possible)

> > exam with a knowledgeable speech pathologist as well. This SLP can

> > coordinate with your child's MD, and school therapist and other

> > professionals, and again be there to assist in a therapeutic plan,

> > help set goals and oversee your child's development over the years

> > if needed.

> >

> > Networking with parents of other speech-impaired children is also

> > possibly one of the best moves you could make in your child's

> > recovery. Others will steer you to the " right " professionals and

> > programs in your area -and you won't feel so alone. I would HIGHLY

> > recommend joining a whose goal is to unite parents and

> > professionals. This group

> > / is through CHERAB

> > http://www.cherab.org

> >

> > The speechville website also has message boards so that you can talk

> > to other parents on particular topics.

> > http://www.speech-express.com/boards/

> >

> > Check your state resources at Speechville to find local support

> > groups and resources.

> > http://www.speech-express.com/regional-resources.html

> >

http://www.speech-express.com/communication-station/regional-support-groups.html

> > (BTW -for anyone who is either running or starting a support group -

> > due to The Late Talker book and the many who will see your group,

> > please make sure your info is up at this website and accurate)

> > I haven't had a chance to check out all this info yet.  I am a

single parent so time is so very limited..as it is  I live on usually

3-5 hrs of sleep a night which is pretty much killin me but there is

just no way around it at the moment.  Hopefully help will be coming

soon which will give me more time to get everything done. Thank you

though for sharing them with me.  I will look at them as soon as I

can

> >

> > PS your email name is music maker -have you thought about music

> > therapy?

Not sure exactly what you mean by music therapy..but I have downloaded

some songs that are geared toward speech delayed children and I play

music for her daily and she " sings " into the microphone of the Karaoke

machine which she LOVES.  We also dance together and I am teaching

her how to play the piano which helps her gain better control of her

finger  and arm movememts.

Thank you again for all the wonderful info!  It is so so

appreciated!! I am looking forward to your reply.

> >

> >

> > =====

> >

[Guest guest]

Thanks for your responses to my questions. I don't have time

to look over all of it right now but just wanted to quickly reduce

your confusion to my one answer below. When you wrote " -her

receptive skills seem slightly delayed but overall seem ok..we have

been signing with her and she has picked that up pretty quickly and

will sign for things she wants " I wasn't commenting on the signing -

which is awesome both that she's signing and that she's doing it

effectively. My comment was only directed to " her receptive skills

seem slightly delayed " because too many of our children are assumed

to be delayed when it's not that they don't know ...they just

can't...yet.

It seems like you are aware now that it's best to give her the

benefit of the doubt. That's a beautiful thing! Give her a huge hug

for me too!

Happy Thanksgiving!

=====