Re: Kids in NJ with apraxia?

[Guest guest]

Thanks Jeanne! Also I have below a list of whomever is on the support list we

have. Another suggestion is to ask your child's private SLP. The professionals

at Tanner's public school didn't let me know there were others either -and I

asked. Private SLPs will know and can even help you start a get together or

support group.

When my son Tanner was first diagnosed (funny story now but then we honestly had

no idea) there was another parent in our son's EI preschool program with

dyspraxia. And when we first spoke I had forgotten what Tanner's SLP said that

he had apraxia/dyspraxia and only called Tanner's diagnosis apraxia. Well this

mom only knew the diagnosis dyspraxia -and we both thought our son had a

different diagnosis. We also were not aware of any others in this area of NJ

that is super close to Summit NJ.

My advice again- talk to your children's SLP and ask him or her to help you

start a support group near you if you don't have one close. I too thought we

were " alone " which is why Zimet CCC SLP who is now with EI in Georgia but

was Tanner's EI therapist in NJ http://earlyinsights.com/ helped me start a

" small " support group out of Children's Specialized Hospital. Read any of my

original messages -I was willing as were other parents to drive for hours to

meet with others -again because we ALL thought we were alone.

Then I started a support group...the room only fit 100 people, not even

something I thought twice about -I mean Tanner's condition was " rare " right?

Ha! We had to take RSVPs because we very quickly couldn't fit everyone in the

room. So if you want to find others with apraxia -don't count on your school

district -because like me you can come face to face with another parent of a

child with the exact same condition and because of all the crazy ridiculous

names for apraxia- especially now " CAS " (why not to call it that!)

http://www.facebook.com/topic.php?uid=115029735601 & topic=15797 you may not know.

In addition some with apraxia preschool age if the parents don't know or the

professionals are not knowledgeable are diagnosed as PDD NOS or high

functioning autistic, some are diagnosed with expressive speech or language

delays or impairments (if you check the archives these are the most common) And

then there are those that have apraxia with autism or some other condition.

This is why it's good to keep the groups open because the only thing rare about

apraxia -is something we used to call " pure " apraxia. That would be apraxia

that only affects speech and that's it. No sensory or tone or motor planning

issues in the rest of the body- that's rare with apraxia.

Here's the Children's Specialized Hospital article from when we first started

the support group from the first meeting. Tanner had JUST been diagnosed-

almost that month http://www.cherab.org/news/childrenshospitalarticle.html Some

think they can't start a support group when they don't know what they are doing.

Sure you can -best way to find out what to do!

And if you want to see one of our support group meetings -this is from an

episode of Inside Edition and you can view the room towards the end ...we had

some great meetings there!!!

Actual segment http://www.cherabfoundation.org/2001/inside-edition-segment/

Our trip to NY with parents and kids, and and her son Khalid as I wanted

him as one of the teens with apraxia featured as well!

http://www.cherabfoundation.org/2001/two-day-trip-to-nyc-for-inside-edition-film\

ing/

Apraxia Network of Bergen County

Contact: Jeanne Buesser

E-mail: jbmistletoe@...

Phone: (201) 741-4035

Meets: Wednesdays, 7-8:30pm

Meeting Locaton: Temple Sholom, River Edge, NJ

South Jersey Apraxia Support Group

Contact: Slager

E-mail: theslagers@...

Phone: (856) 616-9835

Meets: Second Wednesday of the month from 7-9:00 PM

Meeting Location: Cherry Hill Library in Cherry Hill, NJ

Support Contacts*:

Contact: Jodi Schechtman MA-CCC-SLP

Speech Language Pathologist

Director of Interactive Kids

Marlton, New Jersey

E-Mail: jodispeech@...

Website: www.interactivekidsllc.com

Phone: (856) 810-2555

Afterschool Program*:

Contact: Troia-Slutzky-SLP

Speech Language Pathologist

Afterschool Social Skills Program for children

with high functioning Autism, Asperger's and

other social interaction issues.

Bergen County New Jersey

E-mail: cathy@...

Website: www.voicesnow.org

Phone: (201) 446 -4744

Note: We are holding two open house/ information

nights on August 23 and 24 2006 to let parents know

what we are about and how our program will run.

(Anyone interested please call or visit our website.)

I can share a message on how to start a support group if anyone wants to see

that! Let me know!

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