Re: encephalopathy....new diagnosis

[Guest guest]

Oh ya... I do know what I'm talking about thank you very much! I

have a special needs child... I don't know her " diagnosis or label "

yet. I have private insurance, i have medi-cal, i have CCS, I have

regional center, I have to be her advocate for services, I have to

pay for services, I take her to many socially/physically/mentally

stimulating and appropriate activities. I DO KNOW WHAT I'M TALKING

ABOUT.. I'm just saying labels can be negative and not just positive-

[Guest guest]

We all need to take a deep breath...hold it....hold it...OK now

breathe out.

First of all Tara -who started this thread -said that she's sure what

you wrote was misunderstood. We have to remember that emails are not

always the best way to show emotion, and each of us from different

parts of the world may take the meaning of words differently than

what they are meant. All of us that are here are here because we

care for a child with some type of special needs. Some of our

children may have no diagnosis at all -perhaps " just " a late talker

with a developmental delay -actually the great majority of late

talkers are just that. Then there are those who have a diagnosis of

some type of communication impairment. We focus on apraxia here -but

there are also many here who have children with other diagnosis

including rare genetic syndromes. I'm sure there are people in the

world who don't always do the right thing -but as you said on another

email...those type of parents wouldn't be spending free time

searching for answers for their child on a group. We do

disagree at times in this group -but we also have to remember to

support all that post here because at times we all need a hug. Hugs

to you Suzi. The road isn't as hard when you have others to go

through the journey with who can share a few short cuts.

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[Guest guest]

Unfortunately depending on your regional center, simply having delays will not

get the services needed, even though the need can be painfully obvious. I don't

know what regional center you are with but most will give less than minimal time

for what a child needs to progress. For many children, feeding therapy and

speech and OT is not enough.

I can completely understand not wanting a label for a child, I never wanted

one for my son either. Having my son diagnosed with autism and apraxia was the

worst day of my life and not one I ever imagined would happen. However, it did

bring about an intense intervention program which we would not have otherwise

have received. If it were not for early intervention, my son would still be

sitting in a corner banging his head against a wall. If getting the diagnosis

resulted in services that will ultimately save him, I am all for it.

If there are concerns with a diagnosis and the school system, simply revoke

any consent for the Regional Center to share any info at all with them. Any

info from the regional center becomes privy at that point.

If your child has autism, I am sorry for that. It is a hard road. I still

feel that it is unkind and inappropriate to say that parents would " hope to

profit and make easy money on their kids. " Perhaps your post read more harshly

than intended. I don't know a single parent who would not give everything they

had to see their child get help. We all want one thing for our kids.... to get

the services or help they need, to move past any diagnosis they may have and

lead healthy and happy lives.

suzika13 <suzika13@...> wrote:

My daughter may be autistic.. I don't want to push the label yet. I

am considering what the benefit of doing so may be.. she has

services from the regional center.. she is 2 1/2 and the services

she gets like speech, OT, feeding therapy are things she would get

no matter what label she has. I was cautioned by one of her

therapists who educated me one labels and the school system is all.

I f my daughter is autistic.. then fine. If shes not... I would not

want a beefed up label so that she may get some extra services and

attention. Also, some people truly want money and don't care about

their child.. I dont think its anyone who would be on a group

abou ttheir child's issues. Obviously those people probably care

> >

> > We saw our neurologist today. My daughter, who will be 3 next

> week, currently has a diagnosis of global apraxia (not walking or

> speaking yet) We asked him for a different diagnosis...one

insurance

> companies would take more seriously, so encephalopathy is what we

> got. He felt certain this would help us. Does anyone else's child

> have this diagnosis and if so, has it helped you to get more

funding

> for services through your insurance company? Thanks. tara in NJ

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