5 year old in Delaware needs help

[Guest guest]

Please email Sharon if you can help at SharonHes@...

HiWe are from Delaware. Our grandson, Tyler is 5 yrs. old. He has been in speech therapy for almost all his 5 years. He was born with low muscle tone and had sucking and swallowing problems. He has not made much progress at all. We are desperate for help. I now believe that possibly traditional speech therapy may not be what he needs at all. He may have a problem that another therapy may have worked better. We have had so many different therapists. We have been on a waiting list for 2 months for more private intensive therapy (self-pay) and his first apt. was last Tues.--was not overly happy with therapist, but had planned to stay as we knew he needed more then school could give, however I was informed yesterday that she is quitting that group and they now don't have a spot for Tyler so has to go back on the wait list.I started calling and had only one call back from a Dr. that is willing to see Ty Jan. 25th. We are so hopeful she can help. Do you have any ideas if this doesn't for Tyler? We will take him anywhere, but we have no more time to waste with this little child. We want the correct treatment.I would so appreciate if you could lend anything to this and help us with this terrible frustration. And is it only Delaware???? or lack of proper treatment and lack of insurance help happen everywhere???Thank you Sharon H.Delaware

Hi Sharon,

No I don't believe it's just Delaware unfortunately. If it's at all possible to travel to see Dr. Agin in New York I would recommend it. She not only is wonderful at diagnosing as a developmental pediatrician (who has a background as an SLP) but she also has gone "above and beyond" from what I've heard, to help parents advocate for appropriate therapy from both insurance companies and schools. Of course no one person is able to see everyone today or tomorrow, so there is a wait to see her as well I'm sorry to say. I know it's frustrating, I've been there too.

I agree though not to wait if you don't have to. Set up the appointments and continue to seek diagnosis and options for therapy. Has anyone proposed "out of district placement" for the therapy he gets through the school?

There are many alternatives to what is offered. Cheryl , our "Award of Excellence" TV star Educational Consultant Teacher (You can call her Cheryl for short) can give you pointers as well in this area. Bottom line is that he is entitled to an appropriate education-so if the therapy he has been getting now for 2 years (?) isn't working, and other diagnosed issues like hypotonia are not being addressed in the school now with Occupational Therapy for example, then that is something that can be written into the IEP too.

I know there are people on this list from Delaware, and I hope they can answer more specifically where to go for help in your state. Let me know. Also please explore our website under apraxia and the link to support groups to see if there is one in your area. The address is http://www.apraxia.cc

Best,

[Guest guest]

Hi

I am from Delaware also. My 5 year old also has a speech delay. We have

been to Dr. Bean, a neurologist in North Wilmington. He prescribed extra

speech therapy at home. My primary insurance (BCBS) would not pay for this

so after two tries I finally got medicaid. They would not pay for it

either, (many different reasons). Finally I took it to a hearing and won.

They have been paying for home speech therapy since Nov. 99. is has

made lots of progress since. Both her school and home therapist try to

coordinate her therapy. I credited this to Dr. Bean, her social worker at

her school, (she gave me phone numbers of people who helped me), and being

my child's advocate. Please contact me personally and I can give you those

numbers they helped me tremendously. agutow@....

Amy S. Gutowski

E-mail address: agutow@...

Clinical Laboratory Department

Chemistry Senior Medical Technologist (651-5626)

> [ ] 5 year old in Delaware needs help

>

> Please email Sharon if you can help at SharonHes@...

> <mailto:SharonHes@...>

> Hi

> We are from Delaware. Our grandson, Tyler is 5 yrs. old. He has been in

> speech therapy for almost all his 5 years. He was born with low muscle

> tone

> and had sucking and swallowing problems. He has not made much progress at

> all. We are desperate for help. I now believe that possibly traditional

> speech therapy may not be what he needs at all. He may have a problem that

>

> another therapy may have worked better. We have had so many different

> therapists. We have been on a waiting list for 2 months for more private

> intensive therapy (self-pay) and his first apt. was last Tues.--was not

> overly happy with therapist, but had planned to stay as we knew he needed

> more then school could give, however I was informed yesterday that she is

> quitting that group and they now don't have a spot for Tyler so has to go

> back on the wait list.

> I started calling and had only one call back from a Dr. that is willing to

>

> see Ty Jan. 25th. We are so hopeful she can help. Do you have any ideas if

>

> this doesn't for Tyler? We will take him anywhere, but we have no more

> time

> to waste with this little child. We want the correct treatment.

> I would so appreciate if you could lend anything to this and help us with

> this terrible frustration. And is it only Delaware???? or lack of proper

> treatment and lack of insurance help happen everywhere???

> Thank you

> Sharon H.

> Delaware

>

> Hi Sharon,

>

> No I don't believe it's just Delaware unfortunately. If it's at all

> possible to travel to see Dr. Agin in New York I would recommend it. She

> not only is wonderful at diagnosing as a developmental pediatrician (who

> has a background as an SLP) but she also has gone " above and beyond " from

> what I've heard, to help parents advocate for appropriate therapy from

> both insurance companies and schools. Of course no one person is able to

> see everyone today or tomorrow, so there is a wait to see her as well I'm

> sorry to say. I know it's frustrating, I've been there too.

>

> I agree though not to wait if you don't have to. Set up the appointments

> and continue to seek diagnosis and options for therapy. Has anyone

> proposed " out of district placement " for the therapy he gets through the

> school?

> There are many alternatives to what is offered. Cheryl , our

> " Award of Excellence " TV star Educational Consultant Teacher (You can call

> her Cheryl for short) can give you pointers as well in this area. Bottom

> line is that he is entitled to an appropriate education-so if the therapy

> he has been getting now for 2 years (?) isn't working, and other diagnosed

> issues like hypotonia are not being addressed in the school now with

> Occupational Therapy for example, then that is something that can be

> written into the IEP too.

>

> I know there are people on this list from Delaware, and I hope they can

> answer more specifically where to go for help in your state. Let me know.

> Also please explore our website under apraxia and the link to support

> groups to see if there is one in your area. The address is

> <http://www.apraxia.cc>

>

> Best,

>

>