advice/next steps for a 23 month old?

May 5, 2009

hi all,

i've been reading your posts for months now and have found everyone so helpful -

thank you! i've read " the late talker " (a GODSEND!) but i'm at a point now that

i need some advice... (please

the background:

my daughter is 23 months old and has " suspected " verbal apraxia. at 19 months

old she was evaluated as having a " significant " expressive language delay (she

tested at 6 mo level). no other apparent problems at the time,

receptive/hearing/social/motor/cognitive normal, oral/eating almost normal (she

is a mouth " stuffer " and is being eval by OT (for poss sensory-seeking behavior)

on thurs, but no drooling, etc. she had a head injury at 6 mo old from a fall

down the stairs with my husband. the CAT scan showed no bleeds (thank god) but

a fracture in left occipital area. the neurosurgeon who eval her post-hospital

said she checked out fine and had " no higher risk then the general population

for future issues. " i did call him after we learned of her delay and he said

was unlikely from her fall. since 19 mo old she has been seeing a private SLP

1/wk and EI therapist 1/wk, and since 21 mo old EI added a SLP visit 1/wk. my

private SLP seems very familiar w apraxia, is almost positive this is what she

has, and will test her for it after 24 mo. my EI SLP doesn't " believe " in a

diagnosis (huh?) but the general EI is supportive of getting one.

lucy's progress with all this has been monumental. i am a stay at home mom and

" work " with her constantly, too (integrated into our dialog, everyday play,

etc). she went from zero vocalizations & no imitations to signing and

" speaking " one-work approximations (CV sounds, but mostly " b " ) in 2 mo, and now

even tries 2 word " sentences " occasionally (though unintelligible). she

vocalizes more when at home, almost silent when out of her comfort zone, and is

VERY inconsistent in her vocalizations and speech ability (she even said

" bubbles " one day - perfectly - then never again!). even with all of this

progress, no one can really understand her but me, my husband, my 5 year old

son, and her therapists. she can sign, and can approx many consonant sounds

except for " n " and " m " (has not said " mama " since 15 mo old -- she said for one

month then stopped), and has trouble with some vowels, too. she has recently

shown interest in the kaufman cards (my mom got us a set & the private SLP has

used them with her, too). we both make sure it is child-led at this point, but

she enjoys it and cooperates.

this is the background... sorry if it was lengthy but i wanted to make sure i

covered everything!

my questions:

1) should i schedule a visit with a pediatric neurologist now or wait for a dx

from the private SLP? i have great insurance (husband is a teacher so dr

visit coverage is not an issue. if so, anyone have any recommendations? i live

in central CT but would be willing to drive for a good recommendation.

2) my daughter is not really responding to the EI SLP, who does not seem to do

much with her. she just isn't engaging with my daughter at all. she also does

not " appear " to have worked with young apraxic kids (for instance, has no

anecdotal comments from her own experiences to share) , thinks it's

overdiagnosed, and told me today that she doesn't really use the kaufman cards,

if ever only with older kids. do i request a new SLP or am i being judgmental?

3) should i continue to work with the kaufman cards at home (i do this ONLY when

she wants to, i never push it on her and make sure i stop before she wants to --

i keep it positive and fun -- i don't want to turn her off) will this help or

hurt her in the long run? i don't want to interfere with her " real " therapy.

she likes it, thinks they're books, and although she can only vocalize at the

lowest level, she is vocalizing, so that's good, right?

4) should i try to have someone other than myself coordinating my daughter's

therapies at this early stage? is this where a dr would come in? i feel like

since i am not the expert someone else should be doing this....?

thanks for your time, and i appreciate any feedback you could provide!

kindest regards,

marah

May 5, 2009

I'm in NY and have a lot of my 7dd daughters doctors in Westchester and NYC.

There are a ton of very good Ped Neurologists in Ct if Westchester is too far.

It would be good to get one on your team. They can help advise and write scripts

for future testing. An SLP cannot dx Apraxia and most doctors wont dx till after

4yrs old. As long as she's getting EI services- you are ok until she transitions

to preschool. That is the time a dx might get some more leverage, so getting a

Ped Neuro to know her before you need ammo for preschool might help in another

year or so!

My dd was not saying any words at the age of your daughter. The EI SLP adviced

using sign right from the age of 1yr old.....even now--I still know more signs

that I ever would. They're very easy to pick up without taking classes. Her

preschool woud not teach more sign when she got there- but they did understand

her and they also introduced the picture system that she could carry around on a

ring.

Thats one thing the SLP did was have us take pictures of her immediate family

and things/words (food, drinks, snacks)that she used the most or got the most

frustrated with. Than we poked holes in them and put them on a little ring from

Staples that she could carry around with her.

>

> hi all,

>

> i've been reading your posts for months now and have found everyone so helpful

- thank you! i've read " the late talker " (a GODSEND!) but i'm at a point now

that i need some advice... (please

>

> the background:

> >

> 1) should i schedule a visit with a pediatric neurologist now or wait for a

dx from the private SLP? i have great insurance (husband is a teacher so dr

visit coverage is not an issue. if so, anyone have any recommendations? i live

in central CT but would be willing to drive for a good recommendation.

>

> 2) my daughter is not really responding to the EI SLP, who does not seem to

do much with her. she just isn't engaging with my daughter at all. she also

does not " appear " to have worked with young apraxic kids (for instance, has no

anecdotal comments from her own experiences to share) , thinks it's

overdiagnosed, and told me today that she doesn't really use the kaufman cards,

if ever only with older kids. do i request a new SLP or am i being judgmental?

>

> 3) should i continue to work with the kaufman cards at home (i do this ONLY

when she wants to, i never push it on her and make sure i stop before she wants

to -- i keep it positive and fun -- i don't want to turn her off) will this help

or hurt her in the long run? i don't want to interfere with her " real " therapy.

she likes it, thinks they're books, and although she can only vocalize at the

lowest level, she is vocalizing, so that's good, right?

>

> 4) should i try to have someone other than myself coordinating my daughter's

therapies at this early stage? is this where a dr would come in? i feel like

since i am not the expert someone else should be doing this....?

>

> thanks for your time, and i appreciate any feedback you could provide!

>

> kindest regards,

> marah

>

May 5, 2009

Hi Marah!

You rock! Love that you are using the Kaufman cards, signing with your child,

on it with private therapy as well as the therapy via Early Intervention!

The general rule is that while it's difficult to make a definitive diagnosis of

verbal apraxia prior to the age of 3; if a child has signs of verbal apraxia as

well as other " soft signs " (the possible sensory issue with the mouth stuffing

could be one)s/he could be diagnosed as " suspected apraxia " and appropriate

therapy for the motor planning issues can be put in place just in case. If not

apraxic that child will surge and no longer need therapy;but if apraxic those

extra months/years (depending upon the diagnosis age) will be so beneficial.

While verbal apraxia may not be diagnosed as easily prior to 3 -oral apraxia can

be diagnosed much earlier- Sara Rosenthal

Signs of oral apraxia

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

Signs of verbal apraxia

http://www.cherab.org/information/speechlanguage/verbalapraxia.html

Soft signs that typically accompany apraxia

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

1. yes I would schedule an appointment with a neurodevelopmental medical doctor

for two reasons. One is because the private SLP (and you) suspect apraxia; and

two it's probably going to take longer than a month or so to get an appointment

anyway. If not needed you can cancel. Since you read The Late Talker book

there's info in there on what to expect at the neuroMD as well as the " soft

signs " (I also have a link above) Other than possible sensory do you see any

other signs that can be confirmed or ruled out by a neurologist or developmental

pediatrician?

2. yes I would request a different SLP for numerous reasons. I always say not

to worry so much about hurting feelings as there are many reasons why one SLP

may not click with your child. Doesn't mean that same SLP couldn't be a gem to

the next child. Most SLPs I have met over the years are very nice people and

all have seemed to really like working with children. So nothing there to

complain about...but just because someone is nice and likes working with

children doesn't mean they have the training or experience to work with your

child's diagnosis (which we don't know what it is yet) Based on what this EI SLP

said however..I'd say ask for someone else. Who cares if she believes apraxia

doesn't exist prior to the age of 3. You're just seeking the most appropriate

therapy that is going to bring your daughter a voice as quickly as possible

-regardless of what it's called. Ten years from now either this EI SLP will be

right or the private SLP will be right -and you know what you may not know

either of them ten years from now...but your daughter will always be your

daughter. You have to follow your gut and do what you know is best for her.

This way you never have to look back to " if only " Oh and one other

thing...maybe she does stink. I mean there's a top of the class and bottom of

the class for every graduation.

3. Shhhhh I happen to know that there may be an expert behind these cards that

will have more answers on how to work with the Kaufman kit at home in the coming

months. But for now -YES keep working with it. Keep it fun. Use it with games

and toys with no pressure. She's not even 2 years old yet. She doesn't know

what's normal for a 23 month old...so perhaps the lowest level is brilliant.

Stay animated and yes I would keep using it!

4. What you need is a hero on the outside who does coordinate. That could be an

SLP or an MD or both. This professional may be someone that you see once in

awhile who just keeps track of progress -helps to set short and long term goals

-and can make suggestions and work together with the private and EI SLP.

Hope that helps for now!

=====

May 11, 2009

thank you, lisa (and maureen)!

hope everyone had nice mother's days.

i completely appreciate your feedback -- it really helps to get this kind of

reassurance, especially when i feel like i am in uncharted waters. more help on

" at home " use for the kaufman set would be great, i am using them w her more

myself then the SLPs at this point and i want to make sure i am using them

effectively. i'll keep my eyes open for more info on this as it is released

(i'm hoping you'll give us a heads up??

my daughter had her OT eval on thurs, and she did present as having some

sensory-seeking behavior, though apparently not severe. they will be starting

treatment this week. and following your advice i did go ahead and request a new

EI SLP, we'll see where this leads. i'm glad i did it.

meanwhile, i will start looking for a good ped neuro in my area (if anyone has

any suggestions for CT, pls let me know!) . thanks again to you, lisa, and

everyone in this great group for the wealth of knowledge & support. i'm so

lucky to have found it, makes me realize there are others out there who get it.

marah

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From: kiddietalk <kiddietalk@...>

Sent: Tuesday, May 5, 2009 4:36:57 PM

Subject: [ ] Re: advice/next steps for a 23 month old?