Re: 21 mo old son newly diagnosed w/ apraxia - Philly PA area!!

[Guest guest]

Hi and welcome!

At our http://www.apraxia.org group in the discussion section there is a growing

wealth of information -here is some new to apraxia info

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

I know we have many members in your area so tweaked the subject name a bit so

that others can contact you. In addition below are a few contacts you can reach

out to from one of our support pages:

Children's Apraxia Network of PA

(Philadelphia, PA and surrounding area)

Contact:

Phone: (610) 725-8815

Email: wenobrooks@... or

Contact: Lia Gorman

Phone: (610) 296-2330

Email: jimliagorman@... or

Contact: Helene Teufel

Phone: (215) 579-6268

Email: hteufel@...

Meets: Monthly throughout school year at Kencrest Plymouth Meeting Office, Suite

200 at Plymouth Meeting Mall Office Building Plymouth Meeting, Pennsylvania.

Support Contacts*:

Contact: Barbara Eckert

Tionesta/Clarion, Pennsylvania

E-Mail: borjeckert@...

Contact:Melonie Mackey

Greensburg, PA

Phone: (724) 837-9303

E-mail: vondreele@...

Website: http://www.geocities.com/vondreele/hlthmed.html

~~~~~~~~~~~~~~~~~~~~~

I am a huge fan of SLPs that have many therapies that they are trained in that

they can pull from depending upon the goal, the child, and that particular day

as we know kids are going to be kids. So I personally did not seek out

therapists who were only trained in PROMPT (touch cue) but in other motor

planning techniques as well. And there is something else many forget about when

it comes to children today with apraxia if that is what your child has. As

you'll read in the link here

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329 most children

today with apraxia are not only dealing with motor planning issues but with

sensory, muscle weakness and motor planning in the body as well. I've always

been in to therapists who looked at the " whole body " (below is a private email

from a parent who I referred to Tanner's private SLP in his younger years who I

still highly recommend for those in Jersey) I also highly recommend those

therapists who know how to keep it fun for preschool children and get work done

while the child views the work as " play " If a child has apraxia typically it's

years of intensive and at times daily speech and occupational therapy ahead. Of

course recently we are learning about ways to accelerate that quicker such as

with fish oils and NV -but you don't want to burn a child out by the time they

are 3 years old.

Please read over this link

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329 and let us know

what questions you have after.

Speaking of SLPs I recommend -here's a message with names out from someone who

just saw Tanner's SLP in the early days -someone who DOES look at the whole

body:

Hi ,

Thank you again for pushing me to call Ortega! We saw her this past

Thursday. It was an eye-opening experience!!!

Took her less than 5 minutes to pinpoint an issue no one else had identified.

All she did was watch (who will be 33 months on Friday) walk to her room

and start playing with some toys on a table and take a quick glance at the

paperwork I had filled out. Once she saw he had torticollis, she said that was

our issue, that it had never been resolved even if his head no longer tilted,

and we needed to address that first before we could even focus on the speech.

Apparently, his body is compensating for the torticollis, and it's affecting his

posture, his breathing, even the muscles of his jaw and tongue. When she got

him on her table, she confirmed the tight neck muscle and spent about 40 minutes

working to release the muscle, so it would naturally align itself, rather than

stretch it like the PTs did. She also mentioned that there are speech delays

with most cases of torticollis - I don't ever remember hearing or seeing that in

all my research back then, and I'm guessing neither have our MDs and therapists

working with him.

We will see her weekly weekly starting 9/16 for a 50 minute session. Once we

get the torticollis resolved, we'll move on to speech. She really has a

fascinating background...

She also recommended private OT to deal with his sensory issues and dropping all

the other speech and other EI services except for the DI. Funny - she's like the

first SLP I've talked to who actually recommended DI rather than dismissing it.

I have a call into the firm where she's now sharing space (she just relocated to

Warren last week) for the OT services, but we may take our time to drop the rest

of the services only because I know once we drop something especially in EI, we

may never get it back before my son ages out in December. But for the first

time in at least the past 2 months, I feel like we're on to something and am

optimistic (fingers crossed!).

The funny thing is I've been wondering for awhile if there was some relationship

between the torticollis and the apraxia, particularly since there seem to be a

number of kids with both conditions on the board. I had brought up his

torticollis to his PT at least twice this summer, primarily because one shoulder

is higher than another, and I had seen a slight tilt a few weeks back (though I

know that can come back temporarily when there are new milestones being worked

on). The PT had told me that his neck was tight (aka keep stretching!), but not

to worry about the shoulders, that most of us have one shoulder higher than the

other and it's related to handedness.

Ironically, last Wednesday we saw our PT for a monthly session and got to

talking about _____'s limited progress despite all the intensive therapy he's

been receiving since May or June. She had mentioned she knew of a really great

private SLP who seems to get results when others don't. Turned out it was

Ortega!

~~~~~~~~~~~~~end of clip

Hope the above is an example of when you search out a private therapist you

aren't only looking for someone who knows one type of therapy but one who has

many tricks of knowledge in the bag to help, someone who can be your child's

hero.

=====