Independent T1D management, when is it time?
That is certainly a loaded question.
I mean there are so many variables involved in deciding when your child is ready to take over their type 1 diabetes management.
At what age was your child diagnosed?
Our grandson was only 4-years-old at the time of his diagnosis and already he is quite comfortable with many aspects of his diabetes management.
Was the diagnosis recent or several years ago?
Regardless of the age at diagnosis, it takes time to learn to manage T1D(type 1 diabetes) and any child or teen will need assistance at first.
There is no magic age where you suddenly turn over all the responsibility to your child, that would be too overwhelming for most kids
As the child grows and matures they will naturally want to start taking over some of their own care.
We see this happening with our grandson. He does his own finger pokes with supervision and a caregiver is handy to read results and treat highs or lows.
At times he has given himself his injection but he is certainly not ready to take over.
When is it time
There is no magic age when a child is suddenly able to take over their T1D management.
How quickly a child starts doing some of the day to day tasks of managing type 1 diabetes is dependent upon many factors such as:
- how old are they
- what are they able to do
- how independent are they
- how long has it been since diagnosis
- are they willing to take on diabetes-related tasks
Ultimately, this is a very personal decision to be decided within the family who does what for diabetes management. It may even change from day to day.
For example, our grandson sometimes does his own finger pokes. That does not mean he always does it or that it happens every day. When he wants to do it we let him, if he doesn’t we do it for him. He has plenty of time to take over after all he is only 6-years-old.
Kids at this age are concrete thinkers and can understand 3-part directions. They ask lots of questions and cooperate with adults’ requests.
For T1D management they can wear their medical alert ID bracelet, choose a finger for blood checks, turn on glucose meter/insert strip, know which adults are available for help, may begin to recognize and tell you when they feel low.
Children at this age require supervision to ensure meals and snacks are eaten on time.
Early school-aged (6-7)
This group is concrete thinkers, able to do simple math, are learning about time. They may at times struggle for control. They can be forgetful or easily distracted so may require reminders and supervision.
Their T1D management skills may include prick finger for a blood check, start learning about the carb content of food, may recognize low blood sugar, may begin to help with injections, may give pump bolus with supervision.
This age group still needs supervision to ensure meals and snacks are on time and eaten.
Middle school-aged (8-12)
This age group is forming social bonds and this means they desperately want to fit in. They are more logical, responsible, and curious (they can understand cause and effect). They still need reminders and supervision.
They can be a little more involved in their T1D management. They can check their blood sugar with supervision, recognize and treat lows, become more involved with injections and pump boluses. They are beginning to make food choices according to plan.
High school/adolescence (13-18)
This group is becoming abstract thinkers, are more independent and value self-image which can also mean self-consciousness. They may rebel more.
They are much more involved in their T1D management. They may participate in annual diabetes team meetings. They are capable of planning meals and snacks and eating them on time. They can recognize and treat low blood sugar as well as ensure they always have their emergency kit on hand. They are usually able to do injections and boluses but still need some supervision and review.
Since day 1 our daughter has always involved Alex in his T1D care. Even when he was in the hospital at the time of diagnosis they involved Alex every step of the way. This really helped ease his fears while going through so many tests initially.
Talk about diabetes
Talking about type 1 diabetes opening teaches Alex it is not something to hide. Right from the start everything was clearly and simply explained to him.
He is always given an explanation as to why he can’t have something or why needs to have something. This gained not only his trust in his caregivers but also his cooperation.
One thing I feel is extremely important is that we never refer to blood sugar levels as “good” or “bad”. They are what they are, either high or low and we deal with each as it happens according to our treatment plan.
We also don’t refer to food as good or bad. There are snacks for treating lows and there is normal food.
Alex eats what he has always eaten but we have always followed a well-balanced meal plan.
Does that mean he never goes to McDonald’s or birthday parties? Of course not, he’s a kid. We just don’t go all the time and his meal is always balanced with the correct dose of insulin.
Get them involved
When it comes to teaching kids about diabetes management it is important they feel a sense of control so get them involved as early as possible’
The more involved Alex is in his own T1D the more he cooperates when things get tough. What I mean is T1D is tough enough so we give him control as much as possible.
When it comes to blood sugar checks and injections he can decide if he will do it himself or if we do it for him.
If we are doing it we still give him some control over what happens.
For example, finger pokes are necessary but he gets to choose which finger.
Injections have to happen but he can choose the site.
The more he feels some sense of control the easier it is to cope with situations where he may have to eat a snack when he doesn’t feel hungry because he is low. Or he may have to wait to eat that piece of birthday cake because he is too high right now.
Involve other caregivers
Naturally, as Alex’s parents, our daughter and son-in-law are his primary caregivers but there are times when someone else needs to step up.
Alex has two older sisters who are 13 and 16 who are sometimes his caregivers. They have both had their babysitting course and are both very comfortable with blood sugar testing, carb counting, and insulin dosing and injections. Occasionally their parents go out for the evening and the girls take over as caregivers.
Since we are his grandparents, he sometimes comes here for sleepovers. When that happens, I take over as a caregiver. Even if his sisters come with him I take on the role to give the girls a break from diabetes.
Alex attends grade 1 at school so he has a TA (teacher assistant) who acts as his caregiver at school.
He often does his own blood sugar testing at school under the supervision of his TA. The TA does the carb counting and inulin dosing and injection.
Alex attends a very small rural school and will be there for only one more year.
After that, he will need to go to a bigger school and we are still unsure what changes in his diabetes care may have to happen.
Not all schools are comfortable with diabetes management.
We are still unsure if he will be allowed to go on the school bus. Last year and this year Alex has been denied the school bus because the driver is uncomfortable having a diabetic on his bus.
Our son-in-law drives him to and from school most days and I occasionally pick him up.
Technology can help
The technology that has advanced in recent years for diabetes management is phenomenal.
Continuous Glucose Monitor (CGM)
We have a continuous glucose monitor(CGM) for Alex that is truly amazing.
The CGM has a little disc he wears on his arm that has a sensor injected under the skin. It has a corresponding reader so all we have to do is scan the disc and the reader will tell us his blood glucose levels.
It is important to remember that the model Alex wears does have a 15-minute delay, meaning it tells us where he was 15 minutes ago.
When it shows he is low and still going lower we always do a finger poke to get more up-to-date numbers.
It sure has made a big difference in the number of finger pokes each day.
You do need to change the site of the sensor after so many days. Each model is slightly different in how long it lasts.
Some type 1 diabetics wear an insulin pump and they are another amazing piece of technology that can really have a positive impact on the life of a type 1 diabetic.
The pump can replace all those injections.
Some pumps can even work together with a CGM delivering insulin based on the blood sugar readings.
Our grandson has been asking about a pump lately so it was discussed with his doctor during his last visit.
Not all insurance companies cover insulin pumps so they are currently awaiting approval as they are extremely expensive.
Again the pump site will need to be changed every three days.
Still, that is a big difference from the 4 -5 injections each day our grandson is currently enduring.
Once he gets approval we will all have to learn how to work the pump. In our mind, the benefits far outweigh any fears we may have of new technology.
We have discussed “Independent T1D Management – When Is It Time?” in-depth within this article.
Managing type 1 diabetes is a very individualistic thing and each family will determine when is the right time for their child to take over their diabetes management.
Kids grow and mature at different rates so there are no hard and fast rules.
Keep the child involved as much as their age, abilities, and desire allow.
The child has to want to do the tasks or they may not get them done.
We went over some various age-appropriate tasks kids can do for themselves.
There is available technology that can be a big help in managing type 1 diabetes.
When the child shows interest in doing a task then teach it to them and allow them to do it with the supervision of course.
Do you have experience in allowing a T1D child to take over their care?
At what age did they do certain tasks?
Share your experiences in the comment section below.