Help for an old friend

[Guest guest]

Hello Listmates!

You folks have been such a wealth of information for me since I joined

this list some months ago. I can't thank you enough for enlightening me

on the various issues my children have. Now I was hoping you could help

me help an old family friend that lives in CT. Her son has been

receiving EI services for speech delays and lack of play skills. She

seems to be very uninformed of the correct questions to ask and also of

her rights to request supplemental evaluations. Unfortunately she also

has put far too much trust in the professionals that have been working

with her son assuming that they will spot problems, diagnose and treat

accordingly. The care that they have given him so far has been mediocre

at best. For instance: they have not instructed her to do any exercises

with him on a daily basis, they have taught her to punish him by putting

him in a corner for TEN MINUTES!! (he's 2 years old for God's sake!),

they never mentioned that she should bring him to a dev. ped. or a

neuro. (her pediatrician is about as old as dirt and you know how that

can be!), I asked her whether he had been dx with hypotonia because I

saw a lot of traits that my son has and she said she never heard of it,

upon asking the therapist about it she was told " We never thought of

that! We'll have to look into getting some to evaluate him for that. "

Sure enough he has hypotonia from head to toe! What else are they

missing? Who knows! Unfortunately, I can't be there to walk her through

this, I am almost 100 miles from her. From her description of her son's

behaviors it sound as though he may be somewhere in the autism spectrum.

My question to you all is, what can I suggest for her to read to

familiarize herself with the system and educate her in getting her son

the help he needs? These materials would need to be in very easy to

understand terms as she is, I'm sorry to say, not very well educated.

She does not have access to the internet and is very low income so her

resources are limited. (I wish she could join this list!!!) I am

venturing into trying to find a neurodevelopmental pediatrician that

accepts medicaid for her but until then I would like to help her

educate herself on the questions she should be asking and the things she

should be doing in order to help her son. Thank you all in advance.

Private e-mails welcome.

Happy Easter!

Dani in Long Island, NY

[Guest guest]

Dear Dani,

Did they give your friend a book on her rights and the

laws. If not she can call the ct dept of health and

human services, or the dept of public health that runs

the EI.

What they are doing is wrong but hearing her situation

and how they are dealing with her I am not at all

surprised. She will learn very quickly how to ask

questions and sometimes not being the easy going

parent, is very beneficial to her son. I had the

expeirence where when I knew that something was wrong

with my son other than the EI's conclusion that he was

just a " LAte Talker " they actually called me at home

and asked me " Who is paying for this outside eval? "

" We do not think you should take JAck,because he does

not do well at evaluations. " ETC. When I did take him

to the outside eval that is when we got the diagnosis

of Oral Apraxia, Sensory Intergration dysfunction and

at risk for PDD. What does that tell you.

Your friend does not need permission to ask for a

supplemental eval. Infact when I decided to take Jack

to a outside eval, it was based on the fact that I had

a women throught EI a oral motor specialist look at

him 6 months prior, she knew he had apraxia and never

mentioned it. Her unfortunate mistake was to mention

it to his slp who then informed me. I called and made

a complaint to the dept. of public health and they

said because of her neglect for not informing the

parent they would pay for the 600.00$ bill.

My second step was to find a new pediatrician who is

special needs friendly, since your pediatrician will

forever be your life source. That is why we here had

gotten rid of JAck's old one and got someone new.

ANother suggestion would be to find a parent advocate

or someone who has been through the process in her

area some charge and some don't.

The fortunate thing is she has you to give her good

advice on what EI is doing and not doing. The

unfortunate thing is alot of times you will learn as

you go make mistakes.

She could go to the library and use their computer

that is a start.

She may want to get in contact with a support group.

That would be where you come in you could contact

and she could give you a phone # of someone for

her to contact.

I hope I was helpful

Take care and Iwill pray for your friend and her

little boy.

Sincerely,

Eileen

> Hello Listmates!

> You folks have been such a wealth of information for

> me since I joined

> this list some months ago. I can't thank you enough

> for enlightening me

> on the various issues my children have. Now I was

> hoping you could help

> me help an old family friend that lives in CT. Her

> son has been

> receiving EI services for speech delays and lack of

> play skills. She

> seems to be very uninformed of the correct questions

> to ask and also of

> her rights to request supplemental evaluations.

> Unfortunately she also

> has put far too much trust in the professionals that

> have been working

> with her son assuming that they will spot problems,

> diagnose and treat

> accordingly. The care that they have given him so

> far has been mediocre

> at best. For instance: they have not instructed her

> to do any exercises

> with him on a daily basis, they have taught her to

> punish him by putting

> him in a corner for TEN MINUTES!! (he's 2 years old

> for God's sake!),

> they never mentioned that she should bring him to a

> dev. ped. or a

> neuro. (her pediatrician is about as old as dirt and

> you know how that

> can be!), I asked her whether he had been dx with

> hypotonia because I

> saw a lot of traits that my son has and she said she

> never heard of it,

> upon asking the therapist about it she was told " We

> never thought of

> that! We'll have to look into getting some to

> evaluate him for that. "

> Sure enough he has hypotonia from head to toe! What

> else are they missing?

[Guest guest]

Dear Eileen,

Thank you for your response. I will use your info to help her along.

~Dani~