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Devastated (almost) 4 year old

Discussion in 'Parents of Children with Type 1' started by Kaye.Caleb, Nov 11, 2013.

  1. Kaye.Caleb

    Kaye.Caleb New Member

    Nov 11, 2013
    Until recently, my little man, Caleb, was just like every other (almost) four year old. Incredibly outgoing, very spirited and firsty. He is still all of those things, and now he is something more! On August 31st, after rushing to hospital, Caleb was diagnosed with Type 1 diabetes. I thought going through that would be the worst part, seeing him hooked up to all the machines, and I was wrong. I think the worst part, even worse than the not knowing what the future holds for him, one moment to the next and even worse than having to pinch and poke him all day long and worry about how he's managing at school, has been hearing my sweet boy tell me, and others, that he is "not normal" and asking me why none of his friends have diabetes.
    My hope is that somewhere on here is another family, with a 3/4 year old little guy whose also living with diabetes. Someone who can help me support my son and let him know that he really is not alone in this journey; this fight. Having adults around who are living with diabetes is just not the same for him.

    I look forward to hearing from anyone whose been in or is in a similar situation.

    Thank you!
  2. nebby3

    nebby3 Approved members

    Jun 5, 2007
    Sorry to hear about your little one's diagnosis. It is always hard and we have all been there. My dd was younger and couldn't really react so I don't have specific advice about a 3yo. I wanted to say I have always pointed out to my kids how lots of people have something they have to deal with -- glasses, hearIng aids, fake legs (my SIL has one) and even worse illnesses. A lot of how your son perceives D at this age will be a reflection of your attitude. I know it is hard but you do adjust and mostly D becomes part of life. If it doesn't feel that way now, I would suggest faking it :) don't let him see that you feel sorry for him.
  3. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    Hi and welcome. Sorry you had to join the club no of us really want to be in.
    My daughter was diagnosed at age 4, 8.5 years ago. Finding this website was the best thing ever, because I was able to get support and advice from many seasoned parents, and new ones in the same boat. She is now 12 years old, very independent. She is a competitive dancer, an avid skier, and sailor. Her new passion is stand up paddle boarding.

    Remember, your son is still the same outgoing, spirited, feisty kid he always was. It's just that now he has diabetes. It's always hard to remember in the early stages that he is a kid first and diabetes comes second. The one thing you can tell him if he feels alone is that everyone has something that makes them unique. For him it's diabetes. For someone else it may be some sort of allergy. For another glasses. There is really no such thing as "normal." There is a great book out there called "Even Superhero's get Diabetes."

    Depending where you live, there are diabetes summer camps that offer day programs for younger kids, and when he gets older overnight programs. If you live anywhere near MA, Clara Barton Camp/Camp Joslin offers a family camp and day activities throughout the year for families to network. In addition if you clinic offers family events, take advantage of them. It's a great way to meet families. Of course, there is also Friends For Life which is a CWD program offered every summer. It's listed here on the home page.

    I know it's hard to let responsibility of care go to someone else and not worry. Even now, I still worry a bit if I know she's been having a rough patch with either highs or lows. But, we work it out, come up with a plan, keep an open line of communication open with the school nurse. As time goes by it gets bit easier and easier. Try not to be too consumed with worry, it will only make things worse (trust me I know!).
    As for the future, who knows. In the 8.5 years we've been doing this, we've seen diabetes tool drastically improve. We've seen lots of research going on. While I don't know if there will be a cure, my hope is that it will eventually come, but I don't dwell on it. I know that with good care my daughter will live a long, happy, healthy life.

    You will get great advice here. People are incredibly helpful, they tell it like it is and don't sugar coat the facts. They live it 24x7 and have some incredible input to give.
  4. nanhsot

    nanhsot Approved members

    Feb 20, 2010
    You will find lots of support and similar ages/stages here. But no matter the age at diagnosis, one thing seems to be similar...it WILL get better. These early days are so overwhelming, the changes are life altering, the foreverness and the weight of it seems like something that will never be normal.

    My son was not diagnosed at 4, he was diagnosed as a teenager. At the time it felt so unfair, a kid about to learn to drive, to date, to fly and discover his future...no matter the age there is a loss, a grief, a change of everything you thought you knew. This part is universal to all us moms and dads here, and you will find lots of support here.

    Life will feel normal again, you will wake up and think about breakfast instead of blood sugar, he will play with friends, join in on sports, go to school, live his life. Yes, he has something not many of his friends have (and I imagine he'll find other kids with diabetes fairly soon) but everyone has something to deal with...his is just more externally obvious at times with the shots.

    Pretty soon both of you will realize you can handle this quickly and without fuss. Some wise person here in my early days said "soon it'll be just an interesting thing about your son, like a freckle." At the time it seemed impossible for diabetes to ever just be part of him and not this HUGE GLARING thing. But guess what, while it's a bit noisier than a freckle, it really is just part of him, part of the day, deal with it and move on.

    There will be bumps and tears and frustration. But life will move on and you both will soon get into a rhythm that works for you.

    Glad you found this place, it'll help a lot, I've learned more here from the collective wisdom than from any Dr anywhere.

    Consider contacting your local JDRF to see if there are support groups for kids of a similar age. Start researching diabetes camps, he's too young for camp yet but they may have resources for get togethers and such.
  5. Austins mom

    Austins mom Approved members

    Jan 4, 2013
    My 7 yr old son was diagnosed 12/5/12... Him and I were scared to death :eek:!! He was moved to a pump in January and now... I know its strange to think about now but its just part of our adventure together. At the beginning of the school year Austin decided to "Share" his pump in class. I went along to help answer questions from the kids that he didnt have the answers to. I was amazed at how much he knew and how brave he is. Hes my little Hero! These kids are amazing and learn much quicker than we give them credit for. This will just be part of your routine in no time! Maybe talk to the dr about a pump?? Austin is on the One touvh Ping. I chose that one because it has a remote control to give the insulin. The nurse can stand in the back of the room and give his insulin and no one knows but him!!! Good luck
  6. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    By and large the folks who post a lot here in the main forum have been at this a while, but if you look in the "Introductions" forum you can read post after post from recently diagnosed parents about their kids - might help you see that Type 1 is far more common than you might ever have imagined. :cwds:
  7. Lovemyboys

    Lovemyboys Approved members

    Sep 19, 2010
    Hi. My little Type 1 is 4 years old now - he was diagnosed when he was 13 months old. I'm so sorry you had to join this club, but please know that things will get better. I won't lie, it's tough, very tough. But those first few months are the worst, or at least it was for us. Now we still have ups and downs, but diabetes just plays along in the background rather than the star of the show.

    My son just lights up when he meets another diabetic, child or even adult. I'll pm you and maybe we can introduce our little guys so Caleb can see he's not alone in this!
  8. Mish

    Mish Approved members

    Aug 20, 2009
    you haven't mentioned where you are located, but there are many groups around the country through your local ADA and your local JDRF that hold events where kids can come together.

    But online here, many of us have had kids diagnosed at that age, or around that age, and we've all been in your shoes. And we all can help you find the words to use with your son so that he no longer feels "not normal".

    There are some good books from Lilly aimed at younger kids: http://www.lillydiabetes.com/Pages/lilly-and-disney.aspx

    There are many cute books on amazon for younger kids:

    Bottom line. You're not alone.
  9. wondertwins211

    wondertwins211 Approved members

    Feb 28, 2013
    Hi and welcome!
    My daughter is four and was diagnosed in January at age 3. Just sending you lots of hugs and good thoughts. We have come so far in 11 months. Give it a little bit of time and you all will adjust to your new normal. Feel free to PM me if you'd ever like to chat!
  10. zoomom456

    zoomom456 Approved members

    Jan 19, 2011

    My son is 5 and was diagnosed at 13 months. Sorry you had to find us, but you and your son are NOT alone!
  11. KHS22

    KHS22 Approved members

    Oct 17, 2013
    Hey there. No words of wisdom, we are new at this too. But, my 3 y/o last week started asking "why does so-and-so not have to test their blood sugar". It broke my heart a bit. I just try to keep it positive - not focusing on the bad, and factual. I tell her that she has diabetes, and has to check her sugar to be healthy. I don't use scare tactics or rewards, just try to reinforce that this is the new normal.

    We have the benefit of her dad having T1D and a couple friends, so i can add in "you need to check your sugar because you have diabetes like dad, or Aunt Nancy Etc"

    Good luck. And I agree wtih others, try to keep your head up, and keep positive yourself! Might help him to feel more at ease with it all
  12. dshull

    dshull Approved members

    Sep 24, 2012
    So sorry about your son's diagnosis. My son is 8 and was diagnosed at 7. He had a similar reaction to yours. He did not "roll with it" as some kids seem to. He was angry, upset, and very mad that he had to deal with this and other kids didn't. And you know what, I felt the exact same way. I wanted his life to be different and it was very hard for me to answer his questions when I honestly agreed with him about the unfairness of it all.

    I don't have advice other than with time, he will get more used to it and not be as upset. We did take our son to see a counselor, which I thought really helped. It did not change anything, but he got to get his feelings out, and I think that just being heard helped. She let him know it was OK to be mad and did not try to talk him out of his feelings. We also have worked hard to get him to spend time with other kids with diabetes. He liked not being the only one in the room who needed to check his BG, etc. We also encouraged him to share with other kids. It did not take long for him to realize that kids taking shots and needles without crying is a bit of a party trick, and he liked being the expert on something these kids knew nothing about.

    Check out resources in your area - not sure where you are, but in the first year we were able to go to a day long conference for kids with diabetes and their parents, which he loved. He went to diabetes day camp (which took kids as young as 4), and next summer he will go to overnight camp. Through some of these activities, we met young women who were living with diabetes who came to babysit him, and he thought it was really neat to see them give themselves shots.

    The first year is hard, it's a lot to take in and it's a lot of firsts. But I do think that with time, your family will be in a better place and you will all be OK. We're here to help you!!
  13. missmakaliasmomma

    missmakaliasmomma Approved members

    May 31, 2013
    I have to say the best thing I ever did was to make my daughter out to be special because she has diabetes (not many kids we know have it). the person who said his attitude will be a reflection of yours is true. They pick up on so much. Even though you're upset, try not to let him see that. My daughter was dxd at 17 months and me and the rest of us know how hard it is to deal with the diagnosis and seeing them hooked up to machines at the hospital, having to give shots, poke their fingers, etc. It really does get easier. This is all my daughter knows. She is very open about diabetes and once told strangers in a rest stop that she had a pump for her diabetes. She's so funny lol but it made me really proud.

    I have to tell myself everyday that we're lucky it was only diabetes. There are kids that have diseases that are guaranteed not to make it past a certain age. It's really a mindset for me.
  14. kirsteng

    kirsteng Approved members

    Dec 30, 2012
    Almost 11 months ago my son Grady was diagnosed at 3 1/2 years old. One of the first things we did was attend a CWD conference in Toronto, where my son was able to meet all sorts of other kids who also were checking their blood sugars and thinking about what the ate. It was REALLY good for him to feel like he was not alone in this, that there is a community of other kids out there that are going through the same thing. I'd also suggest that you reach out to others in your city or area, arrange playdates etc so that your son doesn't feel so different.

    In the meantime, show him a picture of my son Grady: he's a lot like your son... fun-loving, active, adventurous, sweet and friendly. He started junior kindergarten this year, and is not shy about being tested in front of his friends and telling them about his diabetes. He says 'there's a little part of me that doesn't work the same as yours anymore, so we have to keep an eye on my sugar'. His friend Sebastian offered a finger today and asked me if I'd test him too. ;)

    It does all become a LOT more normal as time goes on. ((hugs))
  15. Kaye.Caleb

    Kaye.Caleb New Member

    Nov 11, 2013
    Thank you!

    Thank you everyone!

    Very new to all of this (diabetes and the forum lol). We live in Ontario, Canada. We've got a fair bit of resources and lots more to discover.

    We live in Ontario, Canada :)

    We do our very best to make sure he has the most "normal" life possible. He's been doing well with everything else; taking his sugar checks and insulin injections like a pro, talking about diabetes, just seems to be missing a connection to another child with T1.

    He's a very outgoing and busy little man with skating, hiking, and getting into all sorts of mischief lately. Honesty has always been my policy, and I am as truthful and honest with him about diabetes as possible. I make a point to make sure that he is aware that he is not diabetes, diabetes is just a small part of who he is as a whole person. School has been fantastic with it all as well, he started late, due the timing of his diagnosis. He gets his lunch time checks and injections right in his classroom with his nurse and the class has read some books and had discussions about diabetes as well.

    It's definitely a new "normal", and that's okay. As many of you have mentioned there are many children who fight various obstacles, and some who will not live through them. Diabetes management and treatment has come a long way! I'm currently taking a university course about diabetes, through coursera.

    I'm glad to have found somewhere with people who are in and have been in similar situations, as much as it sucks that we are here in the first place. This will be very helpful as we continue to move forward in this journey and to grow our support network.

    Thank you to each of you that took time to respond :)
  16. Shopgirl2091

    Shopgirl2091 Approved members

    Mar 16, 2013
    Welcome to the group! I'm sorry you have to be here, but I'm glad that you found us. This group is so supportive it is such a wonderful resource for parents in our situation.

    My son is 4 and was diagnosed in February of this year - if you want to I will PM you a picture of him so you can show your son there are other kids just like him :) It is hard for them to feel alone, and different and frustrated that they have to deal with all of this when it seems like no one else does.

    Like everyone said though depending on where you are there are opportunities to meet other diabetics and for the kids to hang out together. Here in Utah the ADA hosts a 2 day Clubhouse for the little kids who can't go to camp yet. It is such a wonderful opportunity for all of the kids to get together and spend all day doing fun stuff with other kids who have diabetes. I would talk to your doctors office and maybe they could connect you with what Diabetes related activities go on in your area, my son loved the clubhouse and can't wait to go back.
  17. namegirl

    namegirl Approved members

    Mar 26, 2011
    My son is 4 and was diagnosed at 20 months. Your son is not alone! And neither are you. I'd encourage you to continue to find support online and see if there are any groups/events in your area. This big life change will seem incredibly normal after a while.

    Here's a pic of my son from this summer, passing a level at his swim lessons. :) Show the pic to your son and let him know there is still much fun to be had!

  18. SarahKelly

    SarahKelly Approved members

    Nov 14, 2009
    My son is 5, dx at 19 months...we attended local JDRF meetings at first so that he would see consistently that he is not alone. I am also an avid supporter of the diabetes online community (DOC). There are many bloggers like myself whom get together both online and in person to share our experiences and have our children share theirs, too. Nothing is done in a clinical matter, but more of a fun this is our lives kind of way. We help each other through videos, meet ups, posts and even on FB.
    PM me and I'll send you more info if you're interested.
    Just know it does get better, I never want to say easier, because I find that nothing about this is "easy"...there just becomes a point when it becomes your new normal. And around our house (where in our extended family we have a nephew with hemophilia, a beautiful niece with a prosthetic limb) we try to talk about how we're all unique, nobody is "normal" just some differences are more obvious.
    I also find that even if you're only noticing adults living with d it is a good for your child to see...point out the superhero aspect of d in others, find people doing things your son loves. There are countless athletes, scientists, doctors, teachers...etc. At one point Isaac was talking about becoming an astronaut, instead of thinking it wasn't an option I found a NASA worker who blogs about her work and she has t1d. Anything is possible for our kiddos, anything :)
    I know the moments are very hard, and at times excruciating lonely, but please know you and your son are not alone.
  19. Amy C.

    Amy C. Approved members

    Oct 22, 2005
    My son was dx'd when he was almost 4 years old. The best thing we did was to go to a day camp for children with diabetes and their siblings each summer. Otherwise, he never saw anyone else who had type 1 diabetes.
  20. KHS22

    KHS22 Approved members

    Oct 17, 2013
    I'm in Ontario too!! :)


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