Help with design of a program to support the newly-diagnosed - please respond

(Baileysmom) #1

I am part of a small group of parents working with the JDRF office in Los Angeles to create a parent-to-parent volunteer outreach program.  Its purpose is to provide an immediate contact (within 48 hours) for parents of newly-diagnosed children who are going through the anxiety, fear, and grief of those first weeks and months.  This is meant to offer personal, "household" level support to supplement the medical immersion the family is receiving from the hospital or diabetes clinic.  The JDRF embraces our idea and is working to adapt the "mentor" model from the national office to meet our needs locally. 

My question to you is: what advice do you have for us?  What were your questions and needs that you wish you could have asked of another, more seasoned parent?  Would you have welcomed this outreach?  How soon after diagnosis would you have welcomed this contact?  Would it have eased your transition into your new life as the parent of a Type 1?

Thanks for your ideas and feedback! 

(Hania) #2

This is a great idea. I can't think of any questions right now  that I wanted to ask. But, I would have welcomed this outreach. It would be very important that the outreach person is realistic but positive in his/her approach. I think in the beginning many parents dwell on the negative: the trauma of diagnosis; the awful blood sugar readings; the night time BG checks; feeling completely overwhelmed and afraid; the grief of losing an old life and the fear of the new. A mentor should be someone who can show through experience that there is a light at the end of the tunnel; that a new-normal will set in; that the fear will subside etc..... This was told to us by the diabetes educator but it would be great if a seasoned parent could be available to talk. The big thing is to be upbeat, focused on the future. 

This would be great to have because I found that support groups work on education but the overwhelming tone of the participants is negative.  Support Groups are a great forum to share experiences but the horror stories are so scary to a new dx. To have an experienced, non-medical voice of reason help guide a parent to the future would be fantastic. Hope this helps. Hania

(Baileysmom) #3

Thank you for this feedback.  This is exactly the spirit in which we are putting this effort together.  Like you, I found the support group to be focused on education and somewhat negative in tone.  We want to help families go through the process of becoming acclimated to the new normal that will define their lives from that point on.   As additional ideas come to you, please offer them. 

(Gina) #4

Hania,

I am not a parent of a child with type 1. I have type 1 myself. But, I think this is a great idea and I think that a lot of parents as well as people that get diagnosed are very misinformed  in the beginning, and to be able to talk to others that have gone through the exact same thing will be a very comforting thing. YOu are thrown alot of information in a very short amount of time and sometimes doctors and CDEs have no bedside manner and can leave you feeling very depresssed after your appointment.

I hope this works out for families of the newly diagnosed.

 

(ChrisMom) #5

My daughter was just diagnosed on Wednesday. I'm sure you are well aware of the roller coaster and the emotions of this time. Honestly, it's things like this that are helpful. And, the only reason I found this is that a friend of mine has a husband with Type 1 and he recommended I check out the JDRF site because there's so much helpful information. I'm a very open person when it comes to sharing how I'm feeling and such, but I think if another family would have approached me in the last few days I would have felt VERY uncomfortable. There's so much grief to deal with -- I'm on the verge of tears at every minute of the day. But, give me another week or so to let the idea settle in and that approach might be nice. We have a fantastic team at the clinic, but someone who can really understand why I'm such a wreck would be great. The people who aren't very educated seem to think that this is such a treatable disease with such a great lifetime prognosis, that they can't seem to understand why I'm falling apart. So, those reactions don't help. But, watching my 9-year-old turn into this amazing rock and learning so much about something so quickly -- that gives me hope that we really will be ok. I think the parent-to-parent outreach is a great idea, but maybe after the 2-week appointment for me...

Perspective from a "Freshman"  :)

(ReneeC) #6

This truly would be a great resource for parents.  I am a parent of an 8 year old diagnosed two years ago.  Those first couple of weeks were a whirlwind of emotions, new information, fear, worry..........Looking back, it took me 1/2 hour to get the meals ready for him!!!  Chris is right......there must be time to adjust also.  The first couple of weeks, I didn't have time to "chit chat about diabetes"; there seemed to be so much to do.  About a month later, a  friend's friend, whose son is a diabetic as well, (I did not know her before) showed up one day with resource items (books), sick day items, letters she had written for schools/teachers/coaches as a resource, itemized list of doses, medications, times......, and little hints to make my life easier.  I use EVERYTHING she brought; I really learned from her experiences.  I think one thing also, it must be positive.  I needed to see positive and to hear someone say, "Look at me, I've made it and it gets easier".  A lot of sites are "misery loves company", but that doesn't get a job done.  It also doesn't promote a healthy change.  Good luck on this very worthwhile outreach program!

ReneeC

(ReneeC) #7

Chris,

I must say, you are really moving quickly on the research if your daughter was diagnosed last week and you are on the website this week!  Those first couple of weeks are tough, well alright they are hell.  It does get easier.  I read everything I could get my hands on and was inundated with information, but someone who can relate is a great resource to have.  Stay positive and look for the light at the end of the tunnel........it really is there!

ReneeC

(Baileysmom) #8

Renee,

This is very helpful.  Both you and Chris suggest that we wait a decent interval before that first peer/volunteer contact - let the shock and initial grieving take place, and then follow with a call and/or visit.  Does that seem right?  We welcome specific suggestions, including the list of resources you were given, and I will share all of it with our volunteer group.  Many thanks,

Martha (Bailey's mom)

(mlg) #9

My 8 year old son was diagnosed March 24th. I agree that the first week is crazy busy trying to figure everything out and struggling with the grief. Maybe you could send out a card or email to those newly diagnosed and they could respond when they were ready. Everyone grieves in a different way and time and everyone's resources are different. I live alone with my 4 children and there are many times in the past week that I could have used an ear other than a medical professional.

Just an idea. Good luck with this important outreach program.

(trace775) #10

My daughter was diagnosed a little over a year ago.  I just wanted to say that yes the first couple of weeks are a whirlwind of new information.  Yet the more information I got the better I would feel about everything.  I wanted to know that I could maintain some kind of control over it because I was going crazy.  My cousin, who has diabetes herself and also her son, which I did not know. came to the hospital when my daughter was still in there, She brought my daughter the rufus bear and gave me so many tips .  I was so frustrated WHY HER? It seemed overwhelming at first but when we got home, it all came in to play.  She lost alot of weight so when she came home she was hungry all the time but her sugars were high.  ahhh.  All the tips about no carb snacks and high protein snacks and other stuff saved us that first 2 weeks.  Thank you Laurie.

SO ANYWAY GREAT IDEA

  • LOW/NO CARB SNACK IDEAS
  • TROUBLESHOOTING GUIDELINES OF HIGHS/LOWS
  • PARENT TIPS FOR TREATING HIGHS AND LOWS (WHAT WORKED BEST FOR YOU)
  • SOMEONE TO TALK TO THAT UNDERSTANDS WHAT YOU ARE GOING THROUGH

 

(JILL) #11

CHRIS~

Boy can I relate to what you are saying!!  My Daughter has had Type 1 for a little of a year now and was diagnosed right before her 9th Birthday.  SHE got me through it. Saying she was a rock is an understatement!  I was a mess and thought my world was ending because my innocent daughter had this terrible disease and did nothing to deserve it.

Your world is not ending...she is going to be just fine! My daughter, Jensyn, can and will do whatever her heart desires and Diabetes will not control her. We control Diabetes (although sometimes it is difficult)!

You will be a "Senior" in no time :)

~Jill

 

 

 

(Baileysmom) #12

Dear all,  I thank you for continuing to offer your great ideas and share your experiences as T1 parents.  Please keep the posts coming - the family outreach program is evolving and with each of your responses I am more and more convinced that we are offering a very helpful component to those first few challenging months.  I know that as part of our outreach we will encourage new parents to join this online group. 

Thanks and best wishes,

Martha Keates

(prestonsmom) #13

My son is eight years old and was d'x when he was four. We have come to terms with having diabetes, but it is hard to explain to others what could happen during highs and lows. If there is a chart with easy to follow instructions I would love to know and see.

Thanks,

Tori Terry

(Ardy) #14

Martha,

God bless you for doing this…like you I am a JDRF volunteer and am a member of JDRF’s Online Diabetes Support Team which is a one on one online mentoring effort.  My son was diagnosed on Christmas Eve Day (12:21 pm) in 1980 at the age of 11 but indeed I remember it as though it was last Christmas Eve Day. 

Back then things were far different, but at the same time just the same…but different in that we didn’t have the opportunity to go “online” for support.

I agree with others who have said everyone progressing at their own speed, so the important thing is to be there for them whatever stage of the “process” they are in.

Keep up the good work.

Ardy

Mom to Jeff dx’d age 11 now 39

(IndyDon) #15

Martha,  I volunteer for the Indiana chapter where we have an active mentor program.  We receive names of newly diagnosed via the bag of Hope program.  Families have the choice of being assigned a mentor or not participating.  A few hospitals produce the majority of families that want to participate but we try to reach each major center that treats pediatric diabetes patients.  Newly diagnosed families are assigned to one of 25+ mentors that have received basic training on being a mentor.  The goal is to match the families with a mentor under similar circumstances.  So, a newly diagnosed 5 year old girl would be matched with someone who has a girl of similar age and that has been diagnosed for at least a year.  An older teen might be matched with one of the adult type 1 mentors.  We try to reach out as soon as possible and we let the hosptials know that a mentor is willing to come to the hospital to meet with the family during the child's stay (a rare ocurrence).  One of the things that we have found with our mentor program is how few questions many families have, especially if the initial call takes place in the first week of diagnosis.  They can be overwhelmed initially and don't have a lot of questions.  This has been frustrating to many of the mentors who don't feel they are helping much.  There are, of course, instances when parents are thankful to talk with someone and may have many questions.  Our protocol is to do follow-up calls a few months later.  Even with the follow-up many families don't have many questions.  Good luck with yourt program!

(Baileysmom) #16

Don, I really appreciate this response.  We are also linking this program to the Online Diabetes Support Team (ODST) to be sure we are offering help in all forms at all levels.  Every family is different and each one has different needs.  The important thing is for us to be ready to reach out.  Good luck to you - hope your son is thriving!!

(LindaFernandez) #17

Counting carbs and reading food labels

Buying measuring cups and measuring spoons

Foods that you really have to count versus not really like meats or green beans (an extra ounce doesn't matter as much)

What kinds of snacks to keep on hand, juice boxes, yogurt smoothies, etc for lows

Packing a bag to take with you at all times

Learning to go out to dinner

Surviving the stress of highs and lows - accepting that perfection does not exist with diabetes - BG's just happen sometimes

Teaching them about the American Disabilities Act, Section 504

Introducing them to other families who have diabetes - it is a family disease, everyone suffers a loss at diagnosis

(stanandkathie) #18

I live in Idaho and my daughter was diagnosed last year at the age of 4.  I took my daughter to the hospital because the flu she had was getting worse.  She had been to the dr. 3 times that month and I was tired of it.  I have to say that I thought my life was falling apart when they told me she had diabetes.  I have since learned that it isn't falling apart, it is just different.  However, my daughter doesn't have friends she can go hang out with because no one wants to be responsible if something happens to her.  I would have LOVED to have someone come to the hospital with me and just sit with me and let me know it will be ok.  It would have been nice to have someone come to the room and ask me to go for a walk.  I never left her bedside.  I needed to see someone who had gone through the same thing and survived.  I still need someone that when I am feeling overwhelmed I can call and talk to that will understand.  I went on the JDRF walk last year in Boise and my daugher was so happy to see other kids just like her.  I think that not only do us parents need something like this but so do our children!  I would love to be a sponsor to someone else, especially if our children were close in age.  That way if the parents were feeling overwhelmed, they could call and if they needed some time away, they could feel comfortable leaving their child with someone who is experienced with diabetes. 

(Ardy) #19

Hi Katie,

I have been a long time volunteer for JDRF, ever since my son, Jeff, was diagnosed on Christmas Eve day in 1980 at the age of 11.  I can tell you being able to connect with other families who understood what I was going through was an important part of being able to better adjust to this new way of life.  Of course we didn’t have juvenation back then, but I didn’t have a computer back then either.

I couldn’t tell from your post if you are interested in getting involved locally or if you would be interested in our online team.  The ODST (Online Diabetes Support Team) is a program you can volunteer for and be assigned to an individual who contacts the ODST with a specific issue.  As a volunteer you are matched to the request based on your particular “niche” or experience with type 1.  If you are interested in finding out more about this program simply go to the JDRF website and click on the ODST and fill out the form and we can give you more information about the program.

 

If you are interested in a local connection, I know we don’t have a chapter in Idaho but I believe the Walk you participated in is supported by the JDRF NW chapter out of Seattle.  I would be happy to check on this for you and hook you up with the right people.

Just let me know how I can help you get more involved.

Ardy

(stanandkathie) #20

Hi Ardy,

I am intersted in both.  I would love to get something started locally but I would like to be involved on-line also.  My daughter has only been diagnosed a year ago so I can't say I have much figured out but at least I can be there to help someone get through the emotional part of it.  The walk I was in was supported by the Utah chapter so if you know someone there it would be great to get to know them and see if we could figure out how to start something like that up here.  Thanks so much!

Kathie