I clearly recall the day my daughter began her journey parenting type 1 diabetic child. To say she was overwhelmed would be a vast understatement. Naturally, she would have benefited from knowing these 8 tips on parenting a T1D child.
As a mother my daughter sensed something was ‘off ‘ with her son. She recognized the symptoms of type 1 diabetes and after calling me to discuss the possibility she went ahead and made a doctor’s appointment.
At the doctor’s office, my daughter explained to the doctor what was going on with Alex and why she suspected type 1 diabetes.
The doctor immediately did a finger poke and checked his blood sugar levels. They were through the roof.
My daughter was told to take him to the hospital where he would be further tested and likely admitted.
So off they went for the half-hour drive to the hospital in Fredericton. It was not very long before she was told her son was a type 1 diabetic and he would need to be admitted while they determined the best treatment plan for him.
She was devastated and wondering what she did wrong for Alex to get this disease. I want to stress here that She did nothing wrong. Type 1 diabetes is not caused by eating too much sugar or carbs. In fact, there is nothing she could have done to prevent it.
Type 1 diabetes occurs when the body’s immune system literally destroys the cells in the pancreas responsible for producing insulin.
The body needs insulin to place the glucose from our food into our cells where it can be used for energy. Without insulin, the glucose remains in the blood creating very high blood sugar(hyperglycemia). Over time this can cause damage to nerves, blood vessels, and organs.
So now that we have a diagnosis there is so much to learn, it can seem overwhelming but before you know everything will be routine and not so scary as in those first days.
Here are some helpful tips to help ease the struggle.
Deal with the Diagnosis
Ok, so your child is diagnosed with type 1 diabetes. I know it feels like the end of the world, my daughter felt like that too. It is time to dig deep, find your strength, and accept that diabetes will now be a part of your lives.
There is no cure.
You will essentially become your child’s pancreas because theirs has stopped functioning.
You will learn things like:
- blood glucose monitoring (finger pokes)
- carb counting
- insulin dosing
- administering insulin
- CGM’s (continuous glucose monitors)
- insulin pumps
- healthy eating
- regular exercise
- A1c levels
There will be other things to learn as well as you progress on this journey that is type 1. You need to be the rock for your child. You are the one they turn to when they are scared and don’t feel well.
Yes, it is scary but you need to deal with it and accept this new normal. Together you will get through it.
Involve Your Child
Get the child involved in their own diabetes care early on. Let them choose which finger to poke or the site of that injection. It gives them some small sense of control.
Also when treating a low and they need a snack to give them choices. Tell them, “you are low, would you like crackers and cheese or peanut butter and bread for your snack this time?”
Giving them this little bit of control you will gain so much more co-operation and daily life will be so much easier.
As they get older or more accustomed to the finger pokes and injections they may want to do their own finger poke. Let them try.
Schedule Time with the Other Kids
My daughter has two daughters who are not diabetic. When Alex was initially diagnosed the girls stayed with us for the week Alex was in the hospital. This allowed both parents to remain at the hospital learning to care for Alex’s diabetes.
We were able to give uninterrupted time to the girls which they really needed at that time. It is scary to learn your baby brother has this disease that seems to take up so much time to care for.
Once Alex was home they made a point of taking time for the older girls.
The girls love their lunch dates or movie nights with Mom or Dad without Alex and his diabetes being present.
It is too easy for the other kids to feel unimportant because diabetes care really is all-encompassing.
It takes an effort from both parents to ensure the non-diabetic children feel valued.
Oral health can be more difficult with a diabetic child.
My daughter has always been a stickler for oral health.
Since each of her kids were babies she was cleansing their mouths, then once they got teeth she was ensuring they brush their teeth often.
The older girls (15 and 12) even took toothbrushes to school and brushed after lunch (their choice). I believe the girls chose this because they were in such a habit since they were so young.
She is finding it harder with Alex because even though he brushes his teeth before bed there are many times he needs to be woken to sip juice because he is low in the night.
Having that juice in the middle of the night has caused him to have a cavity. which really upset my daughter.
My daughter has said, “It really sucks that I have to sacrifice his teeth to keep him alive.”
I agree with her but it is hard to make him get up and brush in the night if he needs juice. The poor little guy is so tired.
All you can do is make sure he brushes frequently when awake, which she does. She has started wiping his teeth with a cloth the night after juice. Time will tell if this helps.
Play Dates & Sleepovers
Alex has had several play dates with his friend from kindergarten but my daughter is always present.
She doesn’t just drop him off at his friends like she can with the girls. She needs to stay and check his sugars or treat lows.
Diabetes is not something everyone knows about or is comfortable with. It is not something you can just dump on another family.
Maybe in time, His friend’s parents may want to learn about diabetes care but if not Alex needs a parent present when he goes on a play date.
Sleepovers are a different game altogether. You can’t just ask another family to wake every hour to check blood glucose and possibly treat a low.
For the foreseeable future, Alex will be allowed to have kids sleepover at his house but will not be able to go to their house for the night.
It is not worth risking his life to allow that and it is just too much to ask of another family.
To make up for it we take Alex for sleepovers, often without his sisters so he can be our sole focus and the bonus is it gives the rest of his family a much-needed break from diabetes care.
There are times we have all three of them and that works too. The girls even help with his care.
Take Time Away from Diabetes
Diabetes is all-consuming. I mean you need to think about it, plan, make your you always have what you need with you before doing anything.
As parents, you need to take a break from time to time.
In the case of our daughter, we sometimes take Alex for a sleepover to give them a break from diabetes care.
Sometimes we take all three kids so Mom and Dad can have a date night and maybe have a chance to reconnect without the stresses of diabetes.
My daughter loves to read so she tries to schedule some reading time each day. Reading gives her the ability to escape the stress of living with type 1 diabetes. She values this time.
My son-in-law tends to spend time outdoors away from the house and the smell of insulin.
Keep It in Perspective
Yes, there is no cure but by following the treatment plan as set out by your diabetes care team you can live a fairly normal life.
You can still participate in family functions, attend bbq’s, go camping.
With planning, you can even travel on vacation.
Only focus on diabetes as much as is necessary. Take the time to focus on your many other blessings in life. I am sure there are many.
Don’t lose sight of all the good things, draw strength from them.
Find a Support Group
I highly recommend talking with some of the other parents. It will help you feel less isolated in your daily struggles.
There is just something comforting to talk with other parents ‘get it.’
Unless you live with caring for a type 1 diabetic you really can’t grasp the intensity of it.
Every day you are responsible for keeping your child alive. Every time you calculate those carbs and then determine how much insulin to give you are literally holding your child’s life in your hands.
Not enough insulin and they will have high blood sugars risking nerve and organ damage, too much insulin and you could literally kill them.
It is a daily roller coaster of emotions as you do what you must do every day and only other type 1 parents truly understand the struggle.
It is good for the kids to meet another type 1 kid and know they are not alone.
These 8 Tips on Parenting a T1D Child can really help make this new normal go a little bit smoother as you begin your type 1 journey:
- Deal with the diagnosis. The sooner you accept that this is your new normal the easier the transition will be.
- Involve the child in as many decisions as possible( which finger to poke, site of insulin injection, what snack).
- Schedule time for the non-diabetic children if there are any in your household.
- Oral health is important for everyone but you certainly don’t want to develop any gum disease or infections.
- Playdates and sleepovers may be tricky but perhaps a parent can accompany the child to play dates and sleepovers could be at your house.
- Take some time away from diabetes by reading a book or spending time in your workshop or garden. Whatever is your de-stressor, just schedule a time to do it regularly, perhaps even daily.
- Keep it in perspective. Yes, it sucks that diabetes takes so much time and effort to manage it properly but there are so many things in your life to be thankful for. It is important to take note of all the good things in your life.
- Join a local support group and meet other families sharing the same struggles. They may have some really great tips to help do things easier.
Initially, the diagnosis is pretty scary but as you learn to adapt to this new normal you will quickly become proficient and it will all seem normal.
For us, whenever we are with Alex, diabetes management is just a normal part of everyday life and it is hard to remember life before type 1.
The amazing thing about that statement is that it is only just barely past a year since his diagnosis.
What tips do have for making life with a type 1 child easier? How did you deal with your fears at the time of diagnosis? I look forward to reading your thoughts and ideas in the comment section below. Take care and remember ‘you got this‘.
“I am not in any way a medical practitioner, please do not rely on the information on our website as an alternative to medical advice from your doctor or another healthcare provider. We only share our experiences.”