Do It Myself Blog – Glenda Watson Hyatt

Your Accessibility Conscience

Discussing Health Professionals Withholding Info Critical to Premie Babies at the Readers’ Cafe

Filed under: Readers Cafe — by Glenda at 4:00 pm on Wednesday, February 20, 2008

Chris Darling

Hi and welcome to Readers’ Café – the place to gather and to share.

The plan is to interview and chat with a featured guest on some aspect of disability and/or accessibility, and then have readers join in the discussion.

Today’s featured guest is Chris Darling – a metal, stone and wood artisan, folk radio host and father to an adorable six year old daughter Kiki who, along with her twin brother Quinn (who lived 16hour 40 minutes), entered the world at 26.5 24.5 weeks gestation. This began a long journey of near- death operations, shunts and, eventually, a diagnosis of cerebral palsy. Unfortunately, the professionals paid to support parents during this difficult and exhausting time provided very little information. Chris and his wife Magda were left on their own to navigate this unknown world of medical terms, procedures and services.

Chris has kindly offered to share his story today in hopes someone will see it and pass the information onto loved ones that services are available, but only if they make arrangements to “consume” them.

I invite you to come in, relax and join in the conversation. Hit your internet browser’s REFRESH button to see new comments as others join in the conversation. All that I ask is that you respect others and keep it relatively family-friendly. Also, keep in mind that this is a public space, so share what you feel comfortable sharing publicly.

If you enjoyed this post, consider buying me a cafe mocha. Thanks kindly.

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95 Comments »

Comment by Glenda

February 20, 2008 @ 4:02 pm

Welcome Chris to Readers’ Cafe!

Comment by Chris Darling

February 20, 2008 @ 4:02 pm

Greetings Glenda! & whomever else is out there thanks for the invitation.

Comment by Darrell

February 20, 2008 @ 4:04 pm

Hi Glenda,Chris

Comment by Chris Darling

February 20, 2008 @ 4:04 pm

I just wanted to make a slight correction for the “reader’s Cafe that being Magda delivered @ 24.5 weeks which as many know is right on the edge of viability.
I also wanted to thank Chris Brogan for steering me your way.

Comment by Glenda

February 20, 2008 @ 4:05 pm

Thanks so much for coming today, Chris. How is the weather where you are? And where are you?

Comment by Chris Darling

February 20, 2008 @ 4:05 pm

Hello Darrell

Comment by Glenda

February 20, 2008 @ 4:08 pm

Welcome Darrell.

Thanks for that correction, Chris.

Comment by Chris Darling

February 20, 2008 @ 4:10 pm

Gee mthis computer is not the “fastest gun in the West here” a tad slow tonight so bear with me please.

Well I went for a walk in a frigid moonlit walk
for1/2 an hour before i came to sit and be here with you all.
So cold clear and a full moon !

Comment by Glenda

February 20, 2008 @ 4:13 pm

Things are slow here too, so help yourself to some coffee. Chris, would you like to begin by sharing with us how this journey began?

Comment by Chris Darling

February 20, 2008 @ 4:15 pm

I guess I may have ran the information in a way that you missed some of the facts here and there , I too have typos , (you noticed!)

I have been giving alot of thought to my experience regarding our finding services for our daughter who has Cerebral Palsy ans certainly was in need of services , one immediately thinks “Oh t=yeah the healt care system will consel and steer you to services appropriate to the child’s needs

THINK AGAIN.

We found our way in a very different and surprising manner that’s basically what I wanted to state and is the crux of what I want to discuss with all tonight .

Comment by Glenda

February 20, 2008 @ 4:19 pm

Feel free to fill in any missing facts, Chris.

Comment by Chris Darling

February 20, 2008 @ 4:28 pm

Ah yes back to the beginning, we thought all was well with the world my wife & I went to an Ultra-sound @ 21.5 wks and she was fully dialated , TROUBLE I only tell this because I want you to know we fought for these kids and
made every effort to provide care as best we could. To think all is well and to hurled into
the world of a problem pregnacy was the start of it all, with bed rest and bed inversion my wife maintained and miraculously went from 9 cm to 2 cm and in no way could provision for an Incompetent cervix be made
so we prayed and studied a great deal to be as informed a healthcare consumer as we could be.

I imagine if I were a physician I would say it is refreshing to have an informed client, possibly for some threatening. We were informed; every mention of the trials that face new born preemies we studied up on ROP, gastric and respitory issues, and definitely Cerebral Palsy.

In mentioning that I just wanted people to get we were ( as the feedback came back to us ) refreshingly empowered by understanding some of the amazing issues that face premature infants and their developing needs.

We were not cluesless

Or SO we thought.

Comment by Glenda

February 20, 2008 @ 4:32 pm

Knowledge is definitely power, Chris. I can imagine it was still scary and uncertain tho.

Comment by Chris Darling

February 20, 2008 @ 4:36 pm

The Children were born on July 1st Kiki theough the birth canal , but again serious issues with her twin Quinn. he was tangled and he needed to be extracted via and emergency “C” section.

The doctor did rehearse the differing possible scenarios except it took him so long to get Quinn out that his lower extremities were badly bruised .
I got to spend time with both and neonatal care in beyond astounding here two infants of 1lb 3oz and 1 lb 6oz were born to us and
now the heathcare race was on.

Quinn lasted for a short day and expired.

Kiki thrived and we soon foundourselves swimming in internet visits to research care
and offerings for the special needs she required .

we worked hard we thought we knew what we were doing .

Comment by Chris Darling

February 20, 2008 @ 4:37 pm

It was a totally scary time for us.
You know the adage *it* always happens to others not us quickly turns into WHY us, then becomes WHY not us?

i.e.; welcome to humanity!

Comment by Glenda

February 20, 2008 @ 4:39 pm

How difficult and sad, Chris. What were the doctors telling you at this point about your
daughter?

Comment by Chris Darling

February 20, 2008 @ 4:44 pm

Kiki would later need a shunt installed which became infected and she almost died several times.

You know her first 4 months and 9 days were spent in the neonatal ward in Boston then in Portland, so she is familiar with the healthcare system and we became very familiar we learned who were the magnifcent nurses and doctors and who ,,, just maybe had not picked a profession they could excel or perform well at, meaning the mediocre “almost but not quite professionals” there seem to be a few too many in the system who refuse to dialog with you in a respectful way.

We looked for the dialoging/ respectful types.

Comment by Darrell

February 20, 2008 @ 4:46 pm

somtimes the good ones are hard to find.

Comment by Glenda

February 20, 2008 @ 4:47 pm

I have met several of those medical professionals who have chosen the wrong career. Some I don’t know why they bothered becoming doctors. They don’t seem to care.

Comment by Lori-ann

February 20, 2008 @ 4:48 pm

Evening everyone!

Comment by Glenda

February 20, 2008 @ 4:48 pm

How true, Darrell.

Comment by Glenda

February 20, 2008 @ 4:49 pm

Welcome Lori-ann.

Comment by Chris Darling

February 20, 2008 @ 4:50 pm

I am learning from this mode Glenda, Well the doctors were of differing pursuasions;

One walked in and said I swear my mouth dropped when I heard this one;
“Get ready to say goodbye to both of these kids they will be vegetable crippled, blind and retarded”

I asked him to leave and that we would seek another physician’s council.

So yeah super sad and tearing up the soul times it was needless to say rough for us especially my wife.

Kiki’s bleed on the brain provided major concern and her diagnosis was not great and that’s is wehn we kicked our advocacy into “overdrive” looking at all the modalities that offered hope and the best of care.

Comment by Darrell

February 20, 2008 @ 4:50 pm

Hi Lori-Ann

Comment by Chris Darling

February 20, 2008 @ 4:51 pm

Hello Lori- Ann

Comment by Darrell

February 20, 2008 @ 4:52 pm

How coula doctor be so cruel?

Comment by Glenda

February 20, 2008 @ 4:52 pm

Oh my gosh, that is unbelievable, Chris!

Comment by Chris Darling

February 20, 2008 @ 4:54 pm

Not sure how many out there have experience with premature kids or were preemies yourselves but here inthe states they try to care in hospital until the infant is 5pounds and consider that a bechmark where the preemi is “out of the woods” so to speak.

Comment by Karen Putz

February 20, 2008 @ 4:54 pm

Hi All!

Chris, thank you for sharing. I’m appalled at the doctors who can be so heartless during a sensitive time.

Comment by Lori-ann

February 20, 2008 @ 4:55 pm

I was told pretty much the same thing about Kurtis.

Take him home, put him in a crib and call me when you need medication for his pain.

Comment by Glenda

February 20, 2008 @ 4:57 pm

Hey Karen, welcome!

Comment by Darrell

February 20, 2008 @ 4:58 pm

You have got to be kidding(although I know you are not)

Comment by Lori-ann

February 20, 2008 @ 4:58 pm

Kurtis was in hospital for 13 weeks, was discharged at 4 lbs 5 oz. because he was breathing on his own, apnea and brady free for 5 days and successfully drinking from a bottle. It was a red letter day and one I will not soon forget!

Comment by Glenda

February 20, 2008 @ 4:59 pm

Chris, do you feel the health care providers were forthcoming with all information? Do you think life changing/enhancing information and services were ever withheld?

Comment by Lori-ann

February 20, 2008 @ 5:00 pm

Chris,

How old is Kiki now and how is she doing?

Comment by Glenda

February 20, 2008 @ 5:03 pm

I just realized Kiki and Kurtis are about the same age.

Comment by Chris Darling

February 20, 2008 @ 5:03 pm

Surprisingly there are some that really need to be called out and we actually had words with several, respectfully of course , though their practice and or bedside manner was appalling anemic.

So like darrell says the good one are few and far between, I also believe that you have to be dead serious about advocation for your children with special needs. It’s not easy but there is help out there and a world of dedicated professionals who actually “mean Business” when in comes to your/ our kids the issues that get my dander up the most is like Glenda states on the front of this evening “Reader’s Cafe” is the with holding of pertinent information to health-care consumers (often to the detriment and delay of appropriate services being rendered to clients in need.

Comment by Lori-ann

February 20, 2008 @ 5:06 pm

Have any of you seen the documentary “Medicine under the Influence”?

It talks about this very topic and watching it was very emotional.

Comment by Darrell

February 20, 2008 @ 5:07 pm

I have not seen that one,sounds interesting

Comment by Karen Putz

February 20, 2008 @ 5:08 pm

I attended a birth of a baby who was one pound, 13 ounces at 26 weeks. The doctors gave a very grim prognosis saying that there was probably “some mental damage” and that she would likely face cognitive delays. Today, that baby is now 9 years old and in a gifted class. It saddens me to think that the first couple of weeks (even years) of their baby’s life were filled with so much negative prediction by the doctors who cared for her.

Comment by Glenda

February 20, 2008 @ 5:10 pm

I think it takes knowledge and power not to accept a doctor’s every word as gospel, and, unfortunately, not every parent has that inner strength or those skills, particularly when a situation occurs without warning or preparation. Perhaps that needs to be included in parenting books and classes.

Comment by Darrell

February 20, 2008 @ 5:11 pm

the potential is their if we believe in it and nurture our children

Comment by Chris Darling

February 20, 2008 @ 5:16 pm

“Chris, do you feel the health care providers were forthcoming with all information? Do you think life changing/enhancing information and services were ever withheld?”

I am new at this so the HTML stuff for quoteing is well I could be more up to speed on

Great to see the comments my refresh times are a tad slow so
I pasted Glenda’s question in to address it
and mention Kiki is now 6.5 yrs She walks she’s in a special needs class and amainstreams, her vision is good with glasses and she’s one smart kid.

BUT Back to Glenda’s Question;
This is the reason when I first spoke to you about this issue was here we were educated, informed advocates for our child & yet we knew little of the “aftercare” provided by the state of by Mandated by the federal Government MANDATED, now in my book that does not border on maybe that is a given yet
we were, after countless visits to doctors and physicians visiting nurses NOT ONE PERSON,
NADA
NOBODY
ever mention CDS= Child Development Services
What’s wrong with this picture? or should I say “who the heck is minding the store”?

WE NEVER HEARD ONE FROM ANY HEALTH CARE PROVIDER!
I mean when I found out I was shocked that there was this gaping lapse in apropiate communication about available and state & federally Mandated services

H E L L O !

Comment by Darrell

February 20, 2008 @ 5:20 pm

It seems, if you dont know or ask about something they(doctors etc)wont tell

Comment by Glenda

February 20, 2008 @ 5:23 pm

sad, but not totally surprising, Chris. How did you eventually hear about the CDS? Did you ask the professionals why you weren’t told about it?

Comment by Chris Darling

February 20, 2008 @ 5:23 pm

You know with all the work we did and all the visits we saw completely overwhelmed parents of other preemies, we saw preemies that got not visits other tan from the nurses.

It really takes hard work and a strong constitution to be an advocate for a special needs child but we see how being a strong advocate and most certainly loveing that child
also provides major results.

Loves is very, very good medicine.

Comment by anna

February 20, 2008 @ 5:23 pm

Hi everyone,
I wanted to pop in and say hello. I really love what is happening here, but I can’t stay. I am having a rather emotional day and all this hits a little too close to home.

Cheers.

Comment by Chris Darling

February 20, 2008 @ 5:26 pm

Hello Anna Have a good night , I am having a series of Highwater moments here too.

Comment by Glenda

February 20, 2008 @ 5:26 pm

Hi Anna, thanks for popping by. Sorry you’re having a rough day. Hugs.

Comment by Chris Darling

February 20, 2008 @ 5:34 pm

Well the CDS info came from my Sister-in-law, she & my brother adopted a child who they later found out had special needs and they were looking for services and like us many would talk about their services but telling you about CDS she had to really pore into the research and after weeks & weeks was directed to CDS in her are . Thankfully she’s an attorney, a rather good one at the a trial attorney in NYC and she uncovered all these services that were not only available but as previously stated federally mandated.

MOST ESPECIALLY if the child weighs under a kilo! (2.2 lbs) and in that case SS starts to kick in as well.

I asked her , well if these services are mandated why on erath are they not “BROADCAST” to people in need ? I mean it’s tough enough they have to make is a “wild goose chase” to offer it up to many at their it’s end as to what to do .

Yes I am afraid that is the case.

Wehn asked in casual conversation to hospital staff the “sort of” answer is ” We did our respective jobs and that’ not part of out job description !”

OH floor me will ya!

Comment by Darrell

February 20, 2008 @ 5:38 pm

I guess they dont think outside the box, or consider that information would be helpful

Comment by Lori-ann

February 20, 2008 @ 5:39 pm

It’s no different when you looking for alternative therapies. No one will talk about them. No one will point you in the direction of where to find information. It’s better now with having the internet but even still no one will say “I’ve heard HBOT can be helpful” or “conductive ed is great for teaching skills and building on what the child is able to do”. It is very frustrating.

Our early intervention services were very easy to contact and implement but once Kurtis turned 3 things began to get really hard and now it is impossible to get therapy for him.

Comment by Glenda

February 20, 2008 @ 5:40 pm

Unbelievable! Even handing you a brochure or something about the cds would have helped, right? Do you think its a money issue? That’s probably a dumb question!

Comment by Chris Darling

February 20, 2008 @ 5:41 pm

So the sister -in-law tells me they are in every state you are ENTITLED to the services they have to provide them and that’s that!

Knowing that the services start when an infant is three some sevices can be had previous but the CDS service begin in ernest @ age three but please get in there 6months to a year before and study up on how they are provided and please , please if you get nos , ask to speak to speak to others.

My Siter-in-law provided very very valuable information that no one else had , why no social worker had noted this child needed services and why no one locally stepped forward I still to this day do know why.

An tht is the very reason I wanted to spend time here tonight.
I suggested to Glenda thisis an issue that needs addressing thinking she’d find someone else to tlak about it and then she invited me and this is a first for me.

Comment by Darrell

February 20, 2008 @ 5:41 pm

Why?

Comment by Lori-ann

February 20, 2008 @ 5:42 pm

Anyone want to talk about length of time to recieve equipment….that is my bugaboo at this point. I’ve been working on gettin toileting equipment since last June. Finally got a call today that what I ordered in November is here and will be delivered on Friday. Insane!

Comment by Karen Putz

February 20, 2008 @ 5:42 pm

The transition from medical to early intervention services is one issue that I’m working on in my state. It is also tough to get professionals to provide information in a non-biased way so that parents can be in a good position to make informed decisions.

Comment by Glenda

February 20, 2008 @ 5:46 pm

Chris, I really do appreciate you taking the time to share your experiences here today. I admire how hard you’ve fought and continue to fight for Kiki. What an unnecessary expenditure of time and energy when the services DO exist.

Comment by Lori-ann

February 20, 2008 @ 5:46 pm

Why what, Darrel?

Comment by Darrell

February 20, 2008 @ 5:47 pm

Lori-Ann, why cant you get therapy?

Comment by Chris Darling

February 20, 2008 @ 5:49 pm

You know maybe it’s more a If we do not tell them they will not know what to ask for or what is federally mandated .

GASP ! I still am dumbstruck by the stupidity of it all. seemingly the services later would be more costly than approaching the special needs population early and really making the
possible adaptational and other assessments of need to predict an outcome which could be steered to a productive life and happy life.

I still wonder about all those folks who must be “falling through the cracks”

But hey if you are here and or reading this CDS is a very valuable asset to getting the educational and functional logistics of special needs children and people need to know to ask and to arm themselves and loved ones with the knowledge of their availability
As Mandated by law !

Now I do not know about CDS in Canada but I would almost venture to say a positive on it as well.

Comment by Lori-ann

February 20, 2008 @ 5:49 pm

I think a round of high fives are warrented all around. Glenda, and Darrel and Chris are paving the way for those coming along behind. Perhaps the voice of one will be heard speaking for the good of many.

Comment by Lori-ann

February 20, 2008 @ 5:52 pm

Because there are no therapists working privately that have room on their client list. There are so few. Now that the Autism therapies are in place they are all working at full capacity (we can’t even get a behavioural assessment for Kurtis because there is only one person in the province that works with signing kids).

Comment by Darrell

February 20, 2008 @ 5:54 pm

O.M.G.

Comment by Lori-ann

February 20, 2008 @ 5:54 pm

The schools do not “do” therapy. They only look at positioning. So his “therapy” is to be in a standing frame for an hour a day. That is all he gets.

Comment by Chris Darling

February 20, 2008 @ 5:55 pm

Surprisingly the services existed all along and no one locally “pointed to them” which I still
mention it each time I speak with a physician.
In a country that prides itself on “The best care available, they left so much to be desired for the care of our child but once we found it it was OT, PT, ST, etc and she continues to go the Physical therapist she started with as an infant.

Comment by Glenda

February 20, 2008 @ 5:56 pm

Chris, what advice do you have for new parents who are thrust into this kind of situation without any kind of preparation or rehearsal? What kinds of questions should they be asking to be getting the services needed for their child?

Karen, with your background, feel free to chime in here too.

Comment by Lori-ann

February 20, 2008 @ 5:58 pm

The other issue is that once the kids turn 5 they no longer qualify for services from the child development centers. We don’t have a CDC here in PoCo but there is one in Surrey, Maple Ridge and Burnaby. We weren’t allowed to access services through them because we were out of boundary. The CDC in Burnaby has finally agreed to allow me access a therapist for “seating” appointments.

Comment by Glenda

February 20, 2008 @ 5:59 pm

Lori-ann, doesn’t the Child Development Centre provide therapy any more? Or, are they full too?

Comment by Chris Darling

February 20, 2008 @ 6:01 pm

Thanks for the opportunity Glenda ,
Lori Ann sounds like a tough spot to be in have you strategized with government services?
are there Autism resource groups in the area?

I hope you can find more services for Kurtis.

Thanks Darrell , Karen, Lori-Ann, Chris Brogan and Glenda I hope someone who needs services finds them and can get the needed services.

Comment by Glenda

February 20, 2008 @ 6:02 pm

Lori-ann, this is ridiculous. Sounds like things have gone backwards since I was young.

Comment by Lori-ann

February 20, 2008 @ 6:03 pm

Only up to age 5 Glenda. Then the school take over service. But the reality of that is that they have one PT that services the entire school district and works only 4 days a week. Kurtis is high priority and she has been to see him 4 times this year. Her visits are to check the fit of his equipment not to perform any “therapy”

Comment by Glenda

February 20, 2008 @ 6:04 pm

Chris, is there anything we can do so that these federally mandated services are widely known about so that premie babies don’t fall
through the cracks?

Comment by Glenda

February 20, 2008 @ 6:06 pm

How do you parents not go crazy with such nonsense?

Comment by Lori-ann

February 20, 2008 @ 6:09 pm

Getting appropriate services for Kurtis has been really difficult since he turned 3. We did petition the government all the way up to the Minister of Children and Families and the Minister of Health to no avail. We are in a resting phase right now. This stuff just wears you out!

Comment by Glenda

February 20, 2008 @ 6:11 pm

Lori-ann, I hear ya on the worn out bit!

Comment by Chris Darling

February 20, 2008 @ 6:15 pm

Well you can checkout the CDS site; http://childhooddevelopment.org/
and I want to say do not take NO for an answer
if the need is there advocate, advocate advocate, for your kids it gets tiring but if you talk to enough people and really attempt to keep it on the diplomatic side since we look at how seemingly uncoordinated the services are at present the fact is the special needs child is the recipient of the needed services but the adults in that young person’s life really have to pull for the kids, and that takes dediction and at time sacrifice.

noted earlier in the discussion some are not willing to make sacrifices .
and the service via CDS have to start EARLY.

I feel for Lori-Ann who appears to be not receiving appropriate care for her son. Don’t give up find someone who gets where you are and can advocate for you or in unison with you there are folks like that out there I know it is not easy ( who said it would be itis a daily challenge) .

Comment by Glenda

February 20, 2008 @ 6:21 pm

Very good advice, Chris, at any age!

Comment by Lori-ann

February 20, 2008 @ 6:24 pm

It is actually pathetic. Kurtis’ Neurologist and the orthotist and the OT at the school are all attempting to locate someone that can do private physio (we will have to pay out of pocket for that)(the government will only pay for it if he is post surgery) I have called all the therapists from the PT website that say they work with kids (they don’t even call back or return emails)

Comment by Lori-ann

February 20, 2008 @ 6:26 pm

The good news is (drumroll please) there is now a Conductor available locally and a Conductive Education program will be starting up in March. You bet your sweet bippy I was first in line to sign Kurtis up for the program and he will be receiving CE for the next 6 months! YAAAAYYYYY!!!!

Comment by Chris Darling

February 20, 2008 @ 6:27 pm

BTW that could be a regional site ;

I think a very important thing to hold in the mind’s eys is there are services out there , and sometimes the regional aspect creates major issues as in transporting a child long distances to services o lack or limited services so for those in rural places where services are spread thin it is even more difficult via the logistics of “gettingto ” the services as much as just getting the services.

Regional United Way offices can be a great assetan now in a day and age where we have all these communication tools Like digital cameras with video settings. I would recommend she take some footage of caring for her child and using footage of the need that footage shows to advocate.

I would strongly suggest it as a profoundly honest and valuable piece of your reality and profound NEED for services and show it to legislators and community leaders. There may be a film making student who could shoot footage and edit s short piece for you.

I am just saying to get the results you have to sometimes “GET THEM TO SEE YOUR PREDICAMENT” maybe with you talking on it as a homegrow presentation as a request for services. I am dead serious.

Comment by Glenda

February 20, 2008 @ 6:29 pm

I am wondering how we could make some public noise about these issues.

Comment by Glenda

February 20, 2008 @ 6:34 pm

Great ideas, Chris. Its such a shame so much time and energy needs to be used in this way, rather using it to spend with your precious child.

Comment by Lori-ann

February 20, 2008 @ 6:34 pm

For sure Chris. Great ideas. We all keep saying it will take someone in Government to have a reason to “live” this life before things will change in any big way.

By the way, there is no issue with funding for things (other than they will not pay for physio unless it is post surgical)(but that is the least of our concerns). The issue at this point is that the school is the provider of service but offers no therapy and there is a huge lack of available therapists to perform private services. No one has said that Kurtis is not eligible, there just isn’t anyone to hire.

Comment by Glenda

February 20, 2008 @ 6:35 pm

And one last question, perhaps the most important one, how is Kiki doing today?

Comment by Chris Darling

February 20, 2008 @ 6:36 pm

Well for one if services are federally mandated then anyone related to the health and welfare of a special needs child need to pass that information to the parents/ foster parents/ caregivers etc
THAT SHOULD BE MANDATED THAT that information is noted and the hospitalor care facility have the parents etc a form to sign and notarize that they have indeed, been duly notified that the services exist and that the child in question is scheduled to be slated to receive those said services , there will always be a compliance issue, but where there is need there will be more good done to connect Special needs kids with appropriate services.

Comment by Chris Darling

February 20, 2008 @ 6:43 pm

Well in answer to that last question Kiki is fine, she has some ambulatory issues but often walks independently , her vision is good her mind is sharp as a tack and she is 68 pounds and close to four feet tall.

She is the most empathic little being and so incredibly well behaved that the teachers and aids are amazed. we are too.
Here is a clip of her today
http://www.vimeo.com/711782

she asks about her brother & says she misses him will wonders ever cease, she say she wants to be a doctor.

Thanks everyone for your comments and stay in touch

Chris

Comment by Chris Darling

February 20, 2008 @ 6:47 pm

Thank you Glenda for being an inspiration and including me in your Reader’s Cafe.
(Please forgive all my typos!)

Chris Darling
Portland, Maine

Comment by Glenda

February 20, 2008 @ 6:53 pm

Thank you so much, Chrs. This has been good to hear the current issues parents are facing. Do you have any last words or thoughts you would like to add? Btw, Kiki is adorable!

Comment by Lori-ann

February 20, 2008 @ 6:56 pm

Chris, Kiki is adorable and looks like she is doing really well! Congratulations!

Comment by Darrell

February 20, 2008 @ 7:01 pm

Chris it has been great to talk with you, hugs to Kiki

Comment by Glenda

February 20, 2008 @ 7:02 pm

I just found this story http://abcnews.go.com/Health/story?id=4311223 – more proof that “you just never know a child’s potential” and may make all the struggle worthwhile.

Thank you, Chris, for sharing your story. And Darrell, Lori-ann, Anna and Karen for joining us.

Comment by Lori-ann

February 20, 2008 @ 7:07 pm

Good night, Glenda. Thanks for hosting a great topic.

Comment by Chris Darling

February 20, 2008 @ 7:15 pm

I’ll just say (my posts could use editing ha)
I really appreciate those that take the time to hear the message that services exist and one has to fight for them , we could all say it should be this way or that but when it comes down to it, we consumers are often left to educate the providers to note the awkwardness
of withholding “promise” and mandated rights
for services that if we persist maybe soon it will be commonsense to do the right thing and have early care do thorough and effective education of parents of special needs kids,,,

until that time the consumers need to inform each other where the health care industry has failed.

lastly do not give up.

Comment by Glenda

February 20, 2008 @ 7:21 pm

Thanks Chris, well put.

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