Looking for your input

[kyym]

For those I have not had the privledge to have met on here. I am mom to three children two girls age 6 and 3, as well as a little boy 3 months old. My three year old is fighting cancer. Prior to her diagnosis she was given a simple diagnosis of developmentally delayed. She had a J tube placed etc. When she was diagnosed no one sat down with us and said here are the different programs that are available to your family to assist with supplies, funding for medical devices, respite etc, here is a number to call if you have questions regarding funding, etc. the last two years have been spent researching differnt foundations etc that may be able to help us. I am very curious about wheather we were just overlooked by three hospitals when it came to providing information like that above, or is there just not anyone who has the knowledge to sit down give parents all the information they can, with applications contacts etc. So I hope you have the time to answer this for me. I would greatly appreciate it.

Kim

[girlsmum]

I voted for some since I was given only the name of a place called Merrymount after we brought our twin girls home from the hospital. And I think the extra help was given to me only because I was being followed up on regarding a motor vehicle accident we were all in, DH, me and my girls when I was 29 weeks along. MOST of my info came from the occupational therapist assigned to me by the co-operators insurance co. She brought me many supplies intended to help my mobility for the rest of my pregnancy and what life would be like lifting 2 babies after suffering whiplash. The name of Merrymount came from the one visit we got from a public health nurse. The hospital gave us *nothing* other than lactation consultation while IN the hosp.

[sittingpretty]

I am lucky i guess I got told by dd's shrink about the acsd even though I already knew about it) and the tax credit

[Becky Newell]

i have a great social worker from thames valley who provided us with all the information for these programs

[Mommy2Cuties]

Both my girls have Cystic Fibrosis and Alysa was diagnosed at 18 months ( a month before Kiana was concieved who was diagnosed while I was preg with her via amnio) so I know how you feel. I was only give a little bit of information and then told all these websites to go through.

I am sooo sorry to hear about your daughter if you need someone to talk to pm me. My girls arent going through the same thing persay but I can completely relate.

[ButterflyEffect]

We were pretty well informed of what was available to us. We were provided with a social worker in each hospital and once Sophie was released, and she still helps us out even now.
CCAC got most of the stuff going eg. enhanced respite and special services at home, Kids Country Club, etc.
One of the best things we received was the 60 page booklet "Supporting Special Needs Families: Children from Birth to Six Years"
It is loaded with information on services and funding available. It is all London and area so it gives me all the numbers I have needed. Is this the kind of thing you are thinking about?
If anyone needs one I can give you more info.

This website also is one site that gives tons of info www.childrensinfo.ca This is the provincial web portal for all children's services but it has an extensive special needs section.
It has everything on there, from Respite info, funding, treatment, etc.

Good to see you back on here Kim, we've missed you around here!
Rebecca

ETA: I should add that maybe the reason we were given all the information right away was because Sophie's medical situation was not one that evolved over time. We knew that if she survived she would have serious physical and medical issues for her lifetime.

[Leigh]

Mom2luca&sophie;

Can you tell me what your experience has been with Kid's Country Club?

Thanks!

[ButterflyEffect]

Mom2luca&sophie;

Can you tell me what your experience has been with Kid's Country Club?

Thanks!

Sophie has not gone too many times because we utilize the Pratten One Program at CPRI. When she has gone the nurses and other workers always seem nice. I believe she receives good care there, I have never felt anything to the contrary. The only complaint I have is that there are not enough activities for the kids. I would really like to see some sort of Child Life program there.
I think staff turnover is pretty high so we don't really get to know any of the nurses, especially since Sophie attends so irregularly.

Why do you ask?

This is something that can really help parents who are at the end of their rope and need time to recoup. Kim, has Olivia ever been?

[Leigh]

Sophie has not gone too many times because we utilize the Pratten One Program at CPRI. When she has gone the nurses and other workers always seem nice. I believe she receives good care there, I have never felt anything to the contrary. The only complaint I have is that there are not enough activities for the kids. I would really like to see some sort of Child Life program there.
I think staff turnover is pretty high so we don't really get to know any of the nurses, especially since Sophie attends so irregularly.

Why do you ask?

This is something that can really help parents who are at the end of their rope and need time to recoup. Kim, has Olivia ever been?

Was just looking for real feedback. One of my teachers is the director there!

[lilabelle]

I would think a social worker at the hospital would be able to ask the questions and find out what your needs are and direct you from there. Depending on who is overseeing her care, this doctor would likely have a nurse practitioner and/or a case manager too which would know how to direct you. Also if you are hooked up with the oncology program someone from ChildCan would be a great resource to families. Talking with other families can also help navigate you way through who to talk to and what is required (ie paper work, what monies are available for support and the like). Were you hooked up with these resources? Also a CCAC case manager should be able to tap into resources. Did you have something specific you are looking for, or just seeing what your options are? Sorry that you are feeling like a piece is missing. I hope you find what you are looking for.

[boysRus]

I have found that the social workers at CHWO can help you find some resources. There is a resource office on the third floor along the hall between towers near the cafeteria. I think the Social Workers first approach you when you attend the hospital or you can contact them. Because they are busy, I don't think that they have time to follow up unless you show the desire or need. We didn't ask for too many resources and weren't really asking the social worker for much so they pretty much left us to ourselves but made sure that we had a card with their name and number.
Perhaps you didn't have that contact here in London, as most care was done at Sick Kids on Toronto?

Apart from that, I find that there isn't a concise report or office that can provide information about resources. I did the same research and found that Easter Seals was available for some programs and this site is helpful to see if you qualify for government assistance http://www.canadabenefits.gc.ca/faec...&lang=en&geo=5

Because we were working with the psychology department at the hospital, we didn't try CPRI but he did get some Occupational Therapy through the hospital provided by Thames Valley Children's Centre. Perhaps you could look here
www.info.london.on.ca. They list Social Services in London

Respite wasn't really an option that I found. It was difficult as my DS was on treatment for over three years and spent many months at home from school and sick in the hospital. Unfortunately, family(grandparents, aunts etc.) wasn't an option for us and it was difficult. Have you contacted Camp Trillium? 1-888-999-camp They have several programs for families who children have or have had cancer. Trillium in the Community is a program of "special friends" something like Big Brothers or Big Sisters. Youth group is activities organized monthly from Sept to April. There are local Summer Day Camps one week per location. The absolute best are the camps held at Rainbow Lake or Garrett's Island. They have spring and fall weekend Family camps, Residence camps for kids 8 years and over, for 10 days in the summer and Family Camps for 5 days. It is better than respite because you get to participate in family activities with a camp geared to families with childhood cancer. Siblings are eligible to participate in the camps, so your 6 year old could go to day camp for a week this summer. I highly recommend them all.

Best wishes

[Tannaleigh]

We were put into contact with CCAC... in fact we had messages from OT and dieticians and our home nurse before we even made it home. Once Janice our case worker came, she gave me the same book. Special needs families. and approved us for respite care, and pointed out to apply for ACSD as well as home support.
I really haven't gotten a chance to utilize much. We've sent out info for respite, but have yet to see a check, and it took me an entire month to get the ACSD forms sent to me. Apparently Kate NEVER returns phone calls.
Ellie my home nurse says there is lots of information at the health unit as well for assistance, but you have to talk to someone that knows something around there or its just a waste of time.
We have a social worker through Sick Kids and for being new to her position, she is great and very knowledgeable. Heck she has so many clients, yet still manages to recognize us in the hallways when we're just there for clinic...and she always stops to make sure we don't need anything.

I hope you find what you are looking for.

[M2M]

when I was told about Markus holes in the heart and murmurs, they gave me the name and told me to look it up....

[Ivveyy]

We were given huge amounts of information to care for Lilia when we got home. Pretty much everything we needed..the only thing I didnt hear about till receently was the tax credit.

We work mostly with sick kids in t.o, with the transplant program and they are very good at giving you information and resources.

[Jenuwyn]

I would have to say that we were given quite a bit of information regarding our son's medical diagnosis and also funding(such as ACSD, ADP, etc...). But I also asked a lot of questions so maybe that is why we got so much information.