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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 Readersâ€™ CafÃ© â€“ 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.

Todayâ€™s featured guest is Chris Darling â€“ 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 browserâ€™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 chai tea latte. Thanks kindly.

Comments (95)

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95 Comments »

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Comment by Darrell

February 20, 2008 @ 5:38 pm

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

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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.

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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!

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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.

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Comment by Darrell

February 20, 2008 @ 5:41 pm

Why?

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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!

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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.

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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.

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Comment by Lori-ann

February 20, 2008 @ 5:46 pm

Why what, Darrel?

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Comment by Darrell

February 20, 2008 @ 5:47 pm

Lori-Ann, why cant you get therapy?

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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.

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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.

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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).

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Comment by Darrell

February 20, 2008 @ 5:54 pm

O.M.G.

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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.

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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.

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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.

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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.

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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?

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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.

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Comment by Glenda

February 20, 2008 @ 6:02 pm

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

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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”

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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?

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Comment by Glenda

February 20, 2008 @ 6:06 pm

How do you parents not go crazy with such nonsense?

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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!

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Comment by Glenda

February 20, 2008 @ 6:11 pm

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

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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) .

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Comment by Glenda

February 20, 2008 @ 6:21 pm

Very good advice, Chris, at any age!

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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)

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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!!!!

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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.

105172

Comment by Glenda

February 20, 2008 @ 6:29 pm

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

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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.

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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.

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Comment by Glenda

February 20, 2008 @ 6:35 pm

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

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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.

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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

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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

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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!

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Comment by Lori-ann

February 20, 2008 @ 6:56 pm

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

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Comment by Darrell

February 20, 2008 @ 7:01 pm

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

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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.

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Comment by Lori-ann

February 20, 2008 @ 7:07 pm

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

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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.

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Comment by Glenda

February 20, 2008 @ 7:21 pm

Thanks Chris, well put.

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