The Meltdown

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

Hi all,

I have a daughter Alexis, who was dx’d with type1 at 7, and is now 9. She had this huge meltdown last weekend. Don’t get me wrong… I’ve had my fair share. She asked all of the questions, why me? I don’t want to have this… this sucks… and meanwhile she was sobbing as was I. She seems to be a generally happy, well adjusted kid. I’m afraid that she is keeping this all bottled up and that it will hurt her little soul. Diabetes has just become part of us and our family… but I think that she has so much more going on than I know. I would take this away from her in a heartbeat if I could…

2

Hi There Angela: :o)

Oh, poor you and poor Alexis. I feel for you both. It’s Not fair,
that’s for sure. I know you would take it away if you could.

I’m sure it was harder on my Mom than me since she wasn’t
Very educated about Diabetes and I know it stressed her out
not being sure of what to do sometimes. And it was hard trying
to keep our sugars anywhere normal with the primitive testing
they had back then.

You know, I think how a Person deals with their disease is
shaped by so many things. Like a Person’s genes, personality,
the way they are treated by others about their disease, the
amount of education that they receive about it, how things effect
them, etc.

I wasn’t treated Special. I was just supposed to accept it and
through most of it, I did. Except for a bit of rebellion when I was
pre-teens/teenager. I wasn’t rebeling against Diabetes(although
I didn’t like it)but because I was a teenager. That’s what most
teens do. They’re going through their rites and marking their path.
My Rheumy said my stamina is remarkable. I hope that Alexis has
that trait. Then she will certainly survive well.

She may be going through 1 of the 5 stages of grief. Some People
don’t go through any of the stages, some People go through a few
and some go through all of the stages which can last for many, many
years for them until Acceptance of the disease. Sometimes they can
happen in different order. Each Person is diifferent.

Five Stages Of Grief. 1. Denial and Isolation. 2. Anger. 3. Bargaining.
4. Depression. 5. Acceptance.

You can talk to her Ped. about this. He/she may have some ideas to
make Life easier for her, if this the case. Just a thought.

Will she be going to a Diabetes Camp? Most start at age 8. These
usually add a different aspect to a Child’s Life especially if she meets
a long-time Friend there who is going through the same thing.

I’m Glad to hear that the whole Family is involved. That can help a lot.
Of course, getting her into some projects or activities at school or within
the community that excites her will distract her for some time.

In all, I believe that she will be Fine and her Soul will Survive and Shine.
You take Care of You so that You can take Care of Alexis. God Bless! ;o)

3

Sometimes just knowing that it’s "normal " to have these issues makes it a little easier to deal with.

She will be returning to diabetes camp again this summer, I know that she has made lifelong friends with some of the kids that she shared her camp experience with.

Alexis is brave and she dreams big! I truly hope that I can help her help herself.

Thank you for your kind words

Angela

4

WOW…I have been there! I’m writing a book about my experiences growing up with diabetes at the moment and hope to get it published by the end of 2008. It highlights the emotional aspects of living with diabetes and believe me, it’s an exhausting disease. The “why me?” is exactly what I went through for (I hate to say it) years. My parents wished they could take it away from me when I stomped up the stairs and said I hated diabetes. Please have Alexis e-mail me or feel free to e-mail me and talk…I’d love to help you out as this is the huge point I want to voice to docs. My e-mail address is mgobluekate@hotmail.com Please also check out my blog with my day to day challenges and rewards with diabetes. I hope I can help.

5

www.thirstylikethetree.blogspot.com

6

Just heartbreaking. Being there for her and acknowledging how she feels is so important. We can say all kinds of things to them, like “your so strong”, or “you’re going to get through this”, etc. But just letting them vent and listening to them is important. I’m the mom, my daughter has type 1. I will never know exactly how she feels, and she will never understand exactly how I feel. But because we love and respect each other, we listen to each other and try to be understanding.

And I think it’s normal (and even healthy) for them to let it all out. I would be worried if they didn’t. Your description of her says she is generally happy and well adjusted. I used to think my daughter was keeping it all inside as well, but really, she just didn’t want to allow it to be the main focal point of our lives any more than it already is! And when she needs to let it out, she does.

Just being a good mom so that she knows that your with her and there for her when she needs you is really going to make a difference for her. These young years are so difficult already without the added pressure of type 1. For us, we do what we can to not allow it to consume our lives by having fun and being active in other things.

My ex wanted her to do the diabetes walk last year. It was on her birthday. She was so upset. She said, “I don’t want to spend the entire day thinking about my diabetes”. So she didn’t do it. Part of me wishes that she would maybe read more about it (she is a very mature and smart 14) and take more of an interest in it, but she has to do this the way that works for her and I have to let her do that and not pressure or manipulate her into doing it my way. While at the same time making sure she is taking care of herself (and she does mostly). None of this is easy, for the parent or the child, but just trying to be low key without the pressure I think is best. Just my opinion though.

We all have lows don’t we. I know I have a few days every now and then when everything just seems to get to me. She is going to have more and more of those the older she gets. For me personally, I find that prayer is what helps me to get through. I hope Alexis (and you) get through this low spell soon.

7

Hi Angela,
I have a ten year old daughter, Brianna. She was diagnosed at four with Type I and hypothyroidism. Before she was diagnosed, she was the most carefree and happy child you ever met. This disease has made he grow up too quickly. When she was in second grade, we changed her school , and she started having panic attacks. A new school, newnurse and all new children were too much for her to handle. I took her to a child pscychologist who told me all her anxiety stems from her diabetes. I had always been with her the start of every school year and this time they would not let me stay in the class with her.
I never realized how much ths disease affected her until this all happened. I have read many statistics that say 60% of children with diabetes have depression and/or anxiety. Being an ICU nurse, I see alot of teens and young adults who do not handle their diabetes well. I feel if you are a strong influence in your child’s life and show them the right way to take care of their diabetes it makes a huge difference. After sending my daughter to talk to someone , it helped me to look out for signs of when she is down or anxious. Just a few months of counseling made a big difference. I wish I had done it sooner.
My daughter still has her “why me” moments. I always try to point out the less fourtunate children out there who are disabled, and tell her diabetes will never stop her from doing what she wants in life. We need to keep praying for a cure and be grateful for al thetechnology now available to our chldren. Noone knows what we go through as parents unless they live it. You are not alone.

Michele

8

Hi Angela,

I hope you and your daughter are feeling better soon. Diabetes is an awfully grown up disease for a kid to get, and Alexis is perfectly normal to have these feelings. By letting her vent and crying with her, you’ve already taught her that she can find compassion and empathy with you. That’s huge.

I’m with others here, it might help to ask her if she wants to talk to her pediatrician or a counselor about her feelings. Writing them down may help too. The D sucks, and day 9, 125 is no easier than day 1. But there are plenty of friendly ears out here on Tu Diabetes and elsewhere who know what it feels like. Hang in there and keep trying.

Good luck!

9

Hi there Angela,

I read your post the first day it appeared in this site and since then you and your daughter have been on my mind. I’ve spent most of the time since then trying to come up with something eloquent to tell you. Unfortunately, I’ve never been known for my tact, just my honesty.

Although I’m 33, it seems like yesterday when I was your daughter’s age and newly diagnosed with the big D. At 9 years old I remember having quite vivid dreams that my doctor would call my parents and say that he had made a terrible mistake and I, in fact, didn’t have diabetes. Never happened. I also can recall growing up feeling all alone and isolated. Like, no one out there knew what it was like to be me. All I wanted was to be NORMAL. Now that I’m an adult and pretty comfortable with myself, I realize that normal is borring.

Anyway, your story touched me. As a mother I think you’re doing all you can do. By letting her know that you will always be there for her when she wants to talk is HUGE. She probably is experiencing a number of feelings and emotions that she can’t explain. Let her know, from me, that everything she is feeling is perfectly normal. Also, if she would like to talk to someone that has experienced exactly what she is going through, I am just an email away. Trust me, and I know you as a woman can relate to this, growing up is hard enough as it is. But when you add D to it, it just plain SUCKS.

Good luck and you’re both in my thoughts and prayers.

Curlzzz

10

Oh goodness. I feel for you. My little one has asked lots of questions over the last year, but so far we haven’t had a meltdown, but I am sure that it is going to happen in the future.

I don’t really know what else to say other then it sounds like you are doing a great job. I think the most important thing is to be there for your daughter and let her know that she can always talk to you…sounds like you are already doing this. :slight_smile:

I hope that she feels better soon. Maybe (if you haven’t already done this) you could find her a support group of sorts with other kids with Type 1 and that might help her to have someone close to her own age to talk to about D.

Lisa

11

Angela,
Wow, I feel like you are describing me here!! I had the exact same types of incidents when I was growing up. I distinctly remember one time, in the morning, when my mom was rolling the vial of NPH in her hands and getting ready to draw it up, that I had a melt-down. I was probably 8 years old or so. I told her that I didn’t want to take shots anymore, and that none of my friends had to do it and I wanted to be like them and it just wasn’t fair. In hindsight, I realize that my melt-down was probably harder for her than it was for me-- I can’t imagine being the parent of a child who has T1. But she dealt with the melt-down by saying, “you’re right, it’s not fair. I wish you didn’t have to take these shots. But at least you can walk and play with your friends and do almost anything you want to do. Think of the children who can’t.” That helped keep things in perspective for me.
The other thing I remember that helped me was knowing that my dad had given himself shots of saline when he was learning how to give injections. I don’t know why that made me feel better, but it did. (My mom already knew how to give injections because she is a nurse.) And he would always say, “I wish I could take this from you so that I had it instead of you.” My parents were the perfect team-- my dad was very gentle and sympathetic, and my mom was tough when she needed to be, so it was a good balance. I felt that sometimes I just needed one of them to acknowledge how difficult it was to deal with T1, and that made me feel better.