Two parents share their experience supporting their children after a Type 1 diabetes diagnosis, offering a poignant glimpse into their journey. They discuss their child's diagnosis and the lessons they learned while helping them navigate school.
Speakers: People with lived experiences
Speakers: People with lived experiences
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I'm so excited to share with you this new episode featuring The lived experiences of people affected by0:51
diabetes in today's episode on managing diabetes in the school setting you will0:56
meet two parents who will provide a small but impactful glimpse into their experience supporting their children as1:03
they re-entered school after being diagnosed with type 1 diabetes they will share some details about their child's1:09
diagnosis story to set the stage as well as what they learned as they supported their child with going to school1:16
we hope after watching this video that you will gain a greater understanding of how families are impacted by a diabetes1:23
diagnosis as well as the process of working with Partners including schools to support children living with diabetes1:30
we also want to let you know that the story shared by our parents may be difficult to hear and may trigger some1:36
intense emotions we encourage you to seek support and or stop the video If1:41
you find yourself reacting to the content in a distressing way we recognize that the content in this1:47
video may not be relevant for everyone and will depend on what your experience with diabetes is as well as what devices1:54
are available to you where you live if you have specific questions about diabetes management please reach out to2:00
your Healthcare team these videos are for educational purposes only the content discussed in2:06
this video is not intended to be medical advice and to the extent that medical advice is required you should consult2:12
with a qualified medical professional the information discussed in this video cannot replace consultations with a2:19
qualified health care professional to meet your individual medical needs the views and opinions expressed in this2:25
video are those of the speakers and do not necessarily reflect the views or positions of diabetes Canada2:32
as always we hope that this video Sparks your interest in learning more about diabetes management and now over to our2:39
guest speakers Krista and Sylvia Mommy and my family we came 2018 toKristas Story2:46
Canada and for uh six years I was trying to avoid going to2:55
emergency rooms because before we immigrate to Canada we've heard a lot of3:00
terrifying stories about the emergency rooms in North America how you can spend3:06
like seven or eight hours or even more so uh I'm a nurse that's I think that's3:13
important to share I'm a nurse back home and I was uh very prepared when we3:19
decided to move to Canada I took everything I can take so I can check my3:27
kids and deal with everything by myself but the other thing since I have kids3:35
and I have the whole this knowledge um I have two I have two big fears3:42
anaphylaxis and dka3:47
so that's why probably I caught my son immediately at the very beginning3:55
and this happened last year in October it was Saturday morning we had breakfast4:02
and my son asked me for water4:08
and I realized that the whole week this guy was asking me for water4:14
my kids don't ask for water here because I'm that parent who uh asked them to4:22
drink water all the time drink water drink water and they never been thirsty but when he asked me again on Saturday I4:29
had this flashback for the previous whole week he was asking for War I need water when we uh4:37
outside when we're at home and I was like you know buddy let's check your4:43
blood sugar I have the commenter I check my kids black sugar let's say three times per4:50
year randomly because that's that's huge fear for me4:55
and I checked it was 24 uh the nursing me knew immediately5:04
but the mom in me was like no way like this is not happening to this guy it's5:10
very strange moment you know it's true but the same time you cannot believe it5:17
and I changed the Lancet and I checked my of a blood sugar because I thought this5:23
glucometer is not right but it was and it was Saturday morning I'm he's5:31
very happy active the same nothing he doesn't feel bad so he's not in5:37
discomfort anything he's the same boy and I was like okay I didn't know how5:43
the things work in Canada back home you go to your family physician he5:49
immediately prescribed you the medication you need and refers you to endocrinologist like immediately not5:57
after months or days and I thought it's the same and I said to my husband it's Saturday let's wait6:03
for Monday I will call call our family physician and we will go from there6:10
but he was worried and we have this um6:16
this option for um uh face timing with the nurse practitioners from his work we6:24
have this which is awesome and I said okay let's call nurse practitioner and6:29
we will go and enjoy the weekend when the guy heard the number he said6:36
take your son immediately to the emergency room and I said but he's fine6:42
in emergency rooms maybe we will stay for eight hours for my son not only for6:47
my son I I assume for every seven years old kid it's a torture and with this6:53
blood sugar his immune system is not good staying there for seven eight hours in this room with people sneezing7:00
coughing in October I was like can we avoid that and the guy was7:06
the second they hear that number they're gonna admit you immediately and I was7:11
okay I'm going no we stay for a terrible seven hours in the emergency room with7:19
people with fever with he was he became so nervous and so irritated and he's7:25
such a sweet and calm and relaxed guy and the worst part was I was asking7:31
three four times the staff tell me what is going on tell7:37
me how much we're gonna wait and they're like everyone is doing their best I know I I don't blame anyone I know people are7:45
working hard but I need to know whether I will wait like two hours or five hours7:50
or seven hours no one's saying anything and we're staying there so yeah7:57
they admitted us and the diagnosis was there8:02
which was not surprised at that point for me I was I was sure it's this it can8:09
be and our adventure startMy sons diagnosis8:15
my youngest son was diagnosed last year in March 2022. I noticed in earlier in8:21
the year when he was seven years old but something was going on with him he hadn't been feeling well in general he8:26
was losing weight he was not as active and full of energy as he usually was um then my oldest son got coveted and8:33
while we tried to isolate at home inevitably my youngest and I got it as well it was relatively mild at first8:41
um but then my youngest got really sick he wasn't getting better he was vomiting and tired and thirsty8:48
and I'm never one to rush to the hospital right away I try to focus on fluids and rest but with no improvement8:54
I had to take him to the emergency department he was taken in right away um as he was in rough shape at this time9:01
and I'm so thankful that the doctors seemed to recognize the signs and symptoms he moved directly past the9:07
covid into testing and shortly after confirmed a type 1 diabetes diagnosis9:13
looking back his diagnosis makes sense now with his symptoms but until you actually hear from the doctor he has9:21
diabetes you just don't put it together I remember saying out loud I didn't know9:27
and the nurse immediately gave me a hug um I've heard since that that's how a9:32
lot of parents find out in the emergency department um I was devastated I was overwhelmed9:39
and honestly I felt defeated eight months earlier my wonderful husband died in a very tragic car9:46
accident that we were both in so my two boys and I were as a family going through intense grieving process9:52
so once again I I'd say I went through the same types of questions I'd been through before why us why now how am I9:59
going to figure this out and take care of of my boys I'd learned very quickly how intense a10:05
diagnosis of t1d is it is all consuming from day one we stayed in Pediatrics for10:12
two nights as they give them insulin things got more settled we were immediately connected to the Charles H10:17
best center an amazing not-for-profit organization in Durham region dedicated10:23
to t1d and supporting patients and families I am so thankful for the best center especially being a solo parent10:30
now it was my life support for t1d at the time I relied on them so much the10:36
doctors nurses dietitians especially as they had some sick days early on I trusted they would help me keep him safe10:43
remember we both had covids so we were in isolation so we did a lot of our education over Zoom I learned how to use10:50
the devices with the nurse at the hospital a nurse at Zoom it was crazy um there was not a lot of sleep in those10:56
early days I received supplies from the best center initially and we were sent11:02
home um to continue our education and live day to day with the diagnosis my son had missed a few days of school he11:08
went back after March break the best center hosted an online education session with a few key people at his11:14
school the teacher gym teacher principal VP and provided resources and details11:20
about t1d so then I worked with this teacher to make a plan for my son to get11:25
back to class safely uh family was a definite support to me11:31
um I have some family close by and some family further away but just to talk listen11:37
um you know support me when I needed help needed a break needed some time11:42
away um and just to support my son as well um someone for him to talk to just share11:48
his new story um the new requirements um it's it was just helpful to really11:54
have family around and others to just talk to about this a lot of people said11:59
you know hasn't this family been through enough um but we had showed them that you know12:05
we could figure things out so with their help um it was it was doable I'll never12:13
forget my son's teacher um I messaged him from the hospital about the diagnosis and right away he12:21
said well it takes a village to raise a child and consider me part of that Village and I'll never forget that12:28
I needed that my personality is like thisMy personality12:35
I don't I don't over think when the problem is there12:41
and I would say I'm a fighter so I'm not like I know this moment is very12:48
um has very huge mental impact on people but my thinking is okay the problem is12:56
there how to solve it the second that the pediatrician came and said your son13:02
has type one I said did you run all the13:08
tests are you sure and she said 100 and that was it for me from that what I13:16
start thinking what can I do but it's not a common experience and it's not13:24
fair I think toward other families because I knew what type one is I had a13:30
very good knowledge of type one some people in as we say type 1 doesn't13:36
discriminate you it's not necessary for you to know what insulin is or what13:42
pancreas is and I cannot imagine parents receiving this your son has Type13:50
1 what is this what is I've heard about pancreas but what exactly this is13:56
for these families I feel very very bad and I cannot imagine how hard it is like14:04
mentally and physically and I educate myself even if even people with the14:11
medical background when they face this um14:17
type of diabetes in their life they have to continue14:22
um learning about it because it's one thing learning about this in school from the14:29
books one thing to live with it and it's very different experience for14:35
every family diabetes is not one size fits everyone14:42
I remember the it's very hard to make me cry I don't know why it's me14:47
but I remember I cried a lot14:52
I picked up the prescription it was a big bag with insulin with15:00
vaccine glucagon with everything and I went in my bathroom I look at this I15:08
look at this medications and I just start crying because it I realize15:14
what if this guy when he grows now we're good I'm so happy we're good we have a15:21
nice Insurance very good everything is good now at that point but what if this15:28
guy when he grows up he doesn't have a nice insurance he struggled to have this15:33
he has to have this to leave he has to have insulin he has to have15:40
the glucose monitor system to have a good management15:46
what that that's when this hits me I cried I grieved and that was all15:54
because diabetes is like life to be honest you never know you take day by16:00
day it's hard it's a challenge you cannot do anything except do your16:07
best and we decide well I I will finish college here while my son is at home and16:14
when he starts JK I will go and find something and everything was according16:21
to plan I start working part-time after that I start full time everything is perfect16:30
and when this happened my son is uh he16:35
was seven he was in grade two in October now he's eight and he's gonna be grade16:42
three in September my reaction uh was like what we gonna do16:48
I'm working full-time my husband is working full time at home we live very16:53
close to the school and uh he said at the beginning I can go17:00
during the two nutritional break I can go and administer insulin and check on17:05
him but how long this is gonna continue I found out then that there is no17:12
full-time nursing the Canadian school but our nurse told us you know what17:18
there is a option I can connect you with the agency nurse agency and they can17:23
send nurse during the two nutritional break to administer the insulin according to the doses from the17:31
pediatrician we spoke the engine with the agency they said there is a shortage of nurses that was October there is a17:38
shortage of nurses I I don't know how long this will take17:44
for the nurse to be available for you but you have to know if there is a17:50
shortage in the future even if you have a nurse at some point they will not be able to come or if she is sick and they17:58
cannot find replacement so we said okay let's let's see18:03
and I was working and in December before Christmas break they contact us they18:09
said there is a nurse she will come during the nutritional breaks to administer insulin and after that she's18:15
gone that's it only for the insulin but I already had two months experience18:24
and I saw my son still thank God I know some people don't like honey morning18:30
period I love it this is the period in which their pancreas still producing18:35
some insulin and it's very unpredictable and I saw if the nurses coming18:41
administer the insulin according to the insulin to Garb ratio and he go hypo18:48
hypoglycemic where is the nurse we have approximately 600 kids in our school18:57
situation happens you don't have a nurse so that was very surprising to us and at19:06
after all me and my husband decide uh that I have to stay at home19:14
and manage my son blood glucose levels I19:21
never thought it never crossed my mind because I never need we never needed for19:28
anything and uh I'm very very grateful19:33
because our school is amazing we have amazing support from our office star uh19:41
stuff from the principal from the teachers our experience is super positive but they work with me I'm19:49
available he doesn't feel good I'm right there for in within a minute I watch his19:55
Dexcom I follow the Dexcom the second I see he's going down I call them they20:01
react but this and this is working super great because I'm available and this kit20:08
because of that my son doesn't have any any negative experience20:13
and that that that is my goal because he's gonna live with this forever20:20
I want him at least to have a nice and carefree childhoodDiabetes management at school20:26
I wish I had known and truly believed that it is possible to incorporate20:32
diabetes management into our everyday lives including at school20:37
um I heard this from people but I didn't really understand how that could be true I didn't see it when I joined online20:43
communities or spoke to other parents um it all seemed like a lot of conversations of overwhelm and stress20:51
the constant rhythm of blood glucose grafts and alarms and considering my son20:56
was in grade three I just didn't understand how I could manage the demands of this condition and live our21:01
lives without this taking over um and I have two boys so I wanted to be president we focused on both of them21:08
um so I had learned through our tragedy we could do hard things so I guess I just21:13
decided that things were now going to be even harder and needed to figure that out um so pray for strength and keep going21:19
it's what I do uh I was fortunate that my son's school administration and teaching teaching21:25
staff were so supportive of my family and wanted to do anything they could to have my son back in class uh he's21:32
amazing social athletic students we really wanted him to see him Thrive and21:37
be back with his friends and he was feeling and looking so much healthier and active uh and back to my fun21:45
energetic eight-year-old um it's so important to partner in your child's care together with the school21:50
and as a parent to really be a driver of setting them up for Success you're both21:56
still learning but there are key ways to get ready uh the first is open communication is a priority you have to22:03
discuss with the teacher the easiest way to get in touch with you what requires a check-in when snacks and Juice need to22:10
be restocked and so much more my son's teacher actually spoke to his class about t1d before my son returned so they22:18
were aware of what he had you know what he was dealing with and how they could support him when he returned our22:24
principal through a colleague found out that our school board has a care plan uh document for t1d so we used that and22:30
completed it to outline his diabetes management at school uh next preparing for lunch and snacks22:37
is really important uh in absence of a nurse coming to school we didn't have a22:43
nurse there's a shortage so I started going into the school every day to administer insulin for a few minutes22:48
before lunch it is not practical when you're working um I had a bit of flexibility at the22:53
time fortunately my son felt comfortable giving himself injections within a few months after his diagnosis and that was23:01
a game changer um I give him carbs in the same range every lunch so he'd use his chart with23:07
his carb range his blood glucose um and administers what he needs so again I'd set up a process with this23:14
school um where they could have an adult supervised him and they would text me on the dose and I would just know it was23:19
done more recently he has a nurse now come to the school and they often let me23:24
know how empowered and knowledgeable my son is about his condition which makes me so proud23:30
um you also need to ensure office and classroom have stopped emergency cats extra snacks and also the clear process23:39
of who's going to take those when they have fire drills or school trips how is23:45
that all going to work there's going to be Kinks to work out as you're learning but with good communication and staff23:52
like I have at this school that go belong Beyond going through the motions and genuinely caring about my child23:59
we're such a good team supporting my son together I really felt it was important to24:05
prioritize his sense of belonging in the classroom you can ask teachers to give you a heads up if there's special snacks24:11
parties activities and sports at school you can as a parent make a choice if you want to participate if you want them to24:17
have the snack participate in the sports um you can make it happen it just takes some planning24:23
and then finally remember your child is at the center of all this initial swirl while we all work to monitor blood24:30
sugars and shuries cared for we need to remember he's so much more than this condition the first questions at the end of the24:37
school day they need to be about the silly thing you did at recess the new sport he learned in gym it's got to be24:44
about the kids stuff um and then the diabetes stuff I'd say my best piece of advice forAdvice for parents24:50
parents is beware of analysis paralysis um that term the more information and24:57
data you have it can sometimes lead to questioning what to do or even worse or25:02
doing nothing at all um t1d is overwhelming there's so much information out there and you have so25:08
many data points of blood glucose sugars taken every few minutes you can obsess over and react to25:15
um so if you've educated yourself if you're learning about how activity and food affects your child you prepared key25:21
people to support them their blood sugars are in target range you know you don't necessarily need to keep seeking25:27
out new ways of doing things every day be compassionate with yourself be patient you know trust the process and25:34
education that you've been given obsessing over the numbers can really lead to lack of sleep over treating and25:41
just a general sense that our lives revolve around diabetes instead of we take it with us as we go about our life25:48
um so me I really can align it with grief and sadness you know I take that25:53
with me every day and yet I'm living my life with my boys uh the best I can right now25:59
my focus on day one was for my son and I to be in this together he learned everything along with me26:06
um counting carbs insulin delivery advocating for himself how activity affects him I want him to be comfortable26:13
understanding his condition and not have complete Reliance that Mommy will do everything26:18
um I often ask him you know how many carbs do you think that is at restaurants ask them how much insulin he26:24
should be getting what we could do next if his blood sugar is lower high they're great teaching moments to empower your26:30
child uh and finally for your child's well-being it's really important to model as a parent what calmly going26:37
about diabetes management looks like so they're confident you can take care of them and that you know how to respond26:42
that's really the key knowing how to respond to highs lows sick days unexpected events they are going to26:49
happen your child will be looking to you and will start to model how you present26:55
yourself the language you use is important it's not about good or bad numbers it's not about blame and looking27:01
back it's really about responding and moving forward with your child especially in dealing with whatever you27:07
face and learning as you go together there are times of course when I am just27:12
done I'm tired of injections tired of alarms so I need to take a deep breath or a27:18
break and then Focus again on what matters that he is healthy and safe and27:23
that's what matters most uh so we are now almost a year into thisAdvice for parents after 10 months27:31
in like 10 months yeah 10 months into this and27:37
um I think it's very important um for parents at the very beginning when27:45
they're receiving this diagnosis grief cry be mad be sad but just do it27:55
at the beginning and move on don't keep it don't don't don't try to be uh strong28:05
don't grieve accept it go to The Grieving do this at the beginning28:12
because if you don't do it it will come later for sure 100 and after that28:18
focus on the focus on educating yourself28:24
start reading books they're amazing books out there it's not necessary for28:30
them to be a medical professional they're amazing books out there can I share amazing podcasts like um this for28:39
me was life changer Game Changer if you want to28:46
have a great management if you wanna have the understanding of the real life28:54
management of type 1 go and listen to The Juice Box podcast29:00
this I did I was listening like crazy at the beginning to wrap my mind29:07
because you have your team behind you but you gonna be the best29:14
endocrinologist in your kids management people with the best knowledge of this29:21
disease are people that are living it follow they have Facebook group this29:28
Facebook group it's not only great resource of information like real life29:33
information but also you can vent you can share your29:39
victories you can share your your sadness you can share your struggle they29:45
gonna support you and this is huge because some people some people they felt they feel very29:54
depressed and they struggle when they receive this and this is so so normal29:59
you cannot wait months to see a some therapist after months you're gonna30:06
be a pro of course you will need therapies during30:12
the way but it's different at the beginning you need the help right30:17
away you need to see that someone is dealing with this you need someone to30:22
give you real life advice how to deal with this you need to see someone that30:28
you're not crazy that you're not failure you receive type 1 diagnosis for your30:33
kids every Healthcare professionals start telling you oh it's okay30:40
he can eat whatever he cannot everything he wants just just count the carbs those30:46
insulin go and you go and you go back home with this insulin30:52
which is amazing how but also is very dangerous thing and you don't have medical background31:00
and as I always like to share this example some kids like to31:07
start the day with cereal only people that live with type 1 knows31:12
how trick is to those for cereal and imagine this mom super stressed or31:18
dark or whatever caregiver the doctor told me he can eat whatever I31:24
just count the carbs and I dose insulin and they eat cereal the caregiver does31:30
insulin and everything goes in a very very wrong direction how the caregiver31:37
feels like a failure so I really really wish31:43
people to start to stop telling caregivers of newly diagnosed go into it31:49
go let let them be kids let them eat whatever yes you can do that you need31:54
time you need knowledge so that's why my huge and very friendly32:00
advice to caregivers educate yourself read books listen to the podcast I'm telling32:08
you this will give you the whole knowledge and you can do it slowly32:15
slowly slowly you will do it and automatically mentally you're gonna be32:21
okay for the school the the other motto I have and my son32:28
has now also always be prepared32:36
nothing is scary when you are prepared always be prepared32:41
hypers hands hyperglycemias happens be prepared32:51
what I did I can share what I did with my school and I really hope all the32:56
parents have this support from their school after the diagnosis I immediately call33:03
the principal she was amazing she was like so supportive and she said you know33:09
it's very hard to have all the stuff together at the33:15
same time so we can have a meeting with you but I will do my best and she did it33:21
all the teachers were there the admin staff and we sit in a room my son was33:28
with us and I start educating them they were so supportive but also I can see33:35
how stressed they are the second the second I start sharing what can happen33:41
if he if he's hypo and I saw you know33:46
they were they were genuinely very worried and that's okay33:53
but I said and they were so relaxed when I said we will be there my husband or me34:00
you can rely on us all the time we're gonna follow his Dexcom and we're gonna34:06
work together but they were and after that with the office staff with the office admin which are who are great34:13
also we start writing medical care plan and we decide every September we will34:21
change the medical care plan as needed if the changes are there and the other34:28
thing I very much appreciate I told them don't treat my son differently34:34
if you have to push him hard through something push him don't feel sorry34:41
about him and they and they doing it and I love this people need to be educated uh more34:49
in school and everywhere people have to hear more about type one honestly34:55
organization like diabetes Canada they play huge role35:01
in educating people and raising awarenessOutro35:08
thank you so much for joining us for this very important topic and thank you to Sylvia and Krista for sharing their35:14
stories and Shining a light on the experience of raising a child with diabetes again this topic may not be35:20
relevant to everyone living with diabetes but we do hope that you found it interesting and learn something new35:26
please take the opportunity to keep the conversation going by posting a comment in the comment section on YouTube you35:32
can provide this feedback about the video by clicking on the link to the feedback survey in the description box35:38
if you have ideas for other topics you'd like to learn more about you can include that in the comments or feedback survey35:44
as well for more information about diabetes management please visit our website at35:50
diabetes.ca you can also email us at info diabetes.ca or call our infoline at35:57
1-800-benting that's 1-800-226-8464 and speak to one of our36:04
information and support Specialists who can address your needs thanks again for joining us and see you next time36:12
[Music]
if you are new to our video series thank you for joining us if you have been enjoying this series welcome back0:15
our diabetes deep dyes video series is designed to go beyond the surface of General diabetes education we hope to0:22
spark continued interests and learning and leave you with practical tips and tools that you can easily use we drop a0:28
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I'm so excited to share with you this new episode featuring The lived experiences of people affected by0:51
diabetes in today's episode on managing diabetes in the school setting you will0:56
meet two parents who will provide a small but impactful glimpse into their experience supporting their children as1:03
they re-entered school after being diagnosed with type 1 diabetes they will share some details about their child's1:09
diagnosis story to set the stage as well as what they learned as they supported their child with going to school1:16
we hope after watching this video that you will gain a greater understanding of how families are impacted by a diabetes1:23
diagnosis as well as the process of working with Partners including schools to support children living with diabetes1:30
we also want to let you know that the story shared by our parents may be difficult to hear and may trigger some1:36
intense emotions we encourage you to seek support and or stop the video If1:41
you find yourself reacting to the content in a distressing way we recognize that the content in this1:47
video may not be relevant for everyone and will depend on what your experience with diabetes is as well as what devices1:54
are available to you where you live if you have specific questions about diabetes management please reach out to2:00
your Healthcare team these videos are for educational purposes only the content discussed in2:06
this video is not intended to be medical advice and to the extent that medical advice is required you should consult2:12
with a qualified medical professional the information discussed in this video cannot replace consultations with a2:19
qualified health care professional to meet your individual medical needs the views and opinions expressed in this2:25
video are those of the speakers and do not necessarily reflect the views or positions of diabetes Canada2:32
as always we hope that this video Sparks your interest in learning more about diabetes management and now over to our2:39
guest speakers Krista and Sylvia Mommy and my family we came 2018 toKristas Story2:46
Canada and for uh six years I was trying to avoid going to2:55
emergency rooms because before we immigrate to Canada we've heard a lot of3:00
terrifying stories about the emergency rooms in North America how you can spend3:06
like seven or eight hours or even more so uh I'm a nurse that's I think that's3:13
important to share I'm a nurse back home and I was uh very prepared when we3:19
decided to move to Canada I took everything I can take so I can check my3:27
kids and deal with everything by myself but the other thing since I have kids3:35
and I have the whole this knowledge um I have two I have two big fears3:42
anaphylaxis and dka3:47
so that's why probably I caught my son immediately at the very beginning3:55
and this happened last year in October it was Saturday morning we had breakfast4:02
and my son asked me for water4:08
and I realized that the whole week this guy was asking me for water4:14
my kids don't ask for water here because I'm that parent who uh asked them to4:22
drink water all the time drink water drink water and they never been thirsty but when he asked me again on Saturday I4:29
had this flashback for the previous whole week he was asking for War I need water when we uh4:37
outside when we're at home and I was like you know buddy let's check your4:43
blood sugar I have the commenter I check my kids black sugar let's say three times per4:50
year randomly because that's that's huge fear for me4:55
and I checked it was 24 uh the nursing me knew immediately5:04
but the mom in me was like no way like this is not happening to this guy it's5:10
very strange moment you know it's true but the same time you cannot believe it5:17
and I changed the Lancet and I checked my of a blood sugar because I thought this5:23
glucometer is not right but it was and it was Saturday morning I'm he's5:31
very happy active the same nothing he doesn't feel bad so he's not in5:37
discomfort anything he's the same boy and I was like okay I didn't know how5:43
the things work in Canada back home you go to your family physician he5:49
immediately prescribed you the medication you need and refers you to endocrinologist like immediately not5:57
after months or days and I thought it's the same and I said to my husband it's Saturday let's wait6:03
for Monday I will call call our family physician and we will go from there6:10
but he was worried and we have this um6:16
this option for um uh face timing with the nurse practitioners from his work we6:24
have this which is awesome and I said okay let's call nurse practitioner and6:29
we will go and enjoy the weekend when the guy heard the number he said6:36
take your son immediately to the emergency room and I said but he's fine6:42
in emergency rooms maybe we will stay for eight hours for my son not only for6:47
my son I I assume for every seven years old kid it's a torture and with this6:53
blood sugar his immune system is not good staying there for seven eight hours in this room with people sneezing7:00
coughing in October I was like can we avoid that and the guy was7:06
the second they hear that number they're gonna admit you immediately and I was7:11
okay I'm going no we stay for a terrible seven hours in the emergency room with7:19
people with fever with he was he became so nervous and so irritated and he's7:25
such a sweet and calm and relaxed guy and the worst part was I was asking7:31
three four times the staff tell me what is going on tell7:37
me how much we're gonna wait and they're like everyone is doing their best I know I I don't blame anyone I know people are7:45
working hard but I need to know whether I will wait like two hours or five hours7:50
or seven hours no one's saying anything and we're staying there so yeah7:57
they admitted us and the diagnosis was there8:02
which was not surprised at that point for me I was I was sure it's this it can8:09
be and our adventure startMy sons diagnosis8:15
my youngest son was diagnosed last year in March 2022. I noticed in earlier in8:21
the year when he was seven years old but something was going on with him he hadn't been feeling well in general he8:26
was losing weight he was not as active and full of energy as he usually was um then my oldest son got coveted and8:33
while we tried to isolate at home inevitably my youngest and I got it as well it was relatively mild at first8:41
um but then my youngest got really sick he wasn't getting better he was vomiting and tired and thirsty8:48
and I'm never one to rush to the hospital right away I try to focus on fluids and rest but with no improvement8:54
I had to take him to the emergency department he was taken in right away um as he was in rough shape at this time9:01
and I'm so thankful that the doctors seemed to recognize the signs and symptoms he moved directly past the9:07
covid into testing and shortly after confirmed a type 1 diabetes diagnosis9:13
looking back his diagnosis makes sense now with his symptoms but until you actually hear from the doctor he has9:21
diabetes you just don't put it together I remember saying out loud I didn't know9:27
and the nurse immediately gave me a hug um I've heard since that that's how a9:32
lot of parents find out in the emergency department um I was devastated I was overwhelmed9:39
and honestly I felt defeated eight months earlier my wonderful husband died in a very tragic car9:46
accident that we were both in so my two boys and I were as a family going through intense grieving process9:52
so once again I I'd say I went through the same types of questions I'd been through before why us why now how am I9:59
going to figure this out and take care of of my boys I'd learned very quickly how intense a10:05
diagnosis of t1d is it is all consuming from day one we stayed in Pediatrics for10:12
two nights as they give them insulin things got more settled we were immediately connected to the Charles H10:17
best center an amazing not-for-profit organization in Durham region dedicated10:23
to t1d and supporting patients and families I am so thankful for the best center especially being a solo parent10:30
now it was my life support for t1d at the time I relied on them so much the10:36
doctors nurses dietitians especially as they had some sick days early on I trusted they would help me keep him safe10:43
remember we both had covids so we were in isolation so we did a lot of our education over Zoom I learned how to use10:50
the devices with the nurse at the hospital a nurse at Zoom it was crazy um there was not a lot of sleep in those10:56
early days I received supplies from the best center initially and we were sent11:02
home um to continue our education and live day to day with the diagnosis my son had missed a few days of school he11:08
went back after March break the best center hosted an online education session with a few key people at his11:14
school the teacher gym teacher principal VP and provided resources and details11:20
about t1d so then I worked with this teacher to make a plan for my son to get11:25
back to class safely uh family was a definite support to me11:31
um I have some family close by and some family further away but just to talk listen11:37
um you know support me when I needed help needed a break needed some time11:42
away um and just to support my son as well um someone for him to talk to just share11:48
his new story um the new requirements um it's it was just helpful to really11:54
have family around and others to just talk to about this a lot of people said11:59
you know hasn't this family been through enough um but we had showed them that you know12:05
we could figure things out so with their help um it was it was doable I'll never12:13
forget my son's teacher um I messaged him from the hospital about the diagnosis and right away he12:21
said well it takes a village to raise a child and consider me part of that Village and I'll never forget that12:28
I needed that my personality is like thisMy personality12:35
I don't I don't over think when the problem is there12:41
and I would say I'm a fighter so I'm not like I know this moment is very12:48
um has very huge mental impact on people but my thinking is okay the problem is12:56
there how to solve it the second that the pediatrician came and said your son13:02
has type one I said did you run all the13:08
tests are you sure and she said 100 and that was it for me from that what I13:16
start thinking what can I do but it's not a common experience and it's not13:24
fair I think toward other families because I knew what type one is I had a13:30
very good knowledge of type one some people in as we say type 1 doesn't13:36
discriminate you it's not necessary for you to know what insulin is or what13:42
pancreas is and I cannot imagine parents receiving this your son has Type13:50
1 what is this what is I've heard about pancreas but what exactly this is13:56
for these families I feel very very bad and I cannot imagine how hard it is like14:04
mentally and physically and I educate myself even if even people with the14:11
medical background when they face this um14:17
type of diabetes in their life they have to continue14:22
um learning about it because it's one thing learning about this in school from the14:29
books one thing to live with it and it's very different experience for14:35
every family diabetes is not one size fits everyone14:42
I remember the it's very hard to make me cry I don't know why it's me14:47
but I remember I cried a lot14:52
I picked up the prescription it was a big bag with insulin with15:00
vaccine glucagon with everything and I went in my bathroom I look at this I15:08
look at this medications and I just start crying because it I realize15:14
what if this guy when he grows now we're good I'm so happy we're good we have a15:21
nice Insurance very good everything is good now at that point but what if this15:28
guy when he grows up he doesn't have a nice insurance he struggled to have this15:33
he has to have this to leave he has to have insulin he has to have15:40
the glucose monitor system to have a good management15:46
what that that's when this hits me I cried I grieved and that was all15:54
because diabetes is like life to be honest you never know you take day by16:00
day it's hard it's a challenge you cannot do anything except do your16:07
best and we decide well I I will finish college here while my son is at home and16:14
when he starts JK I will go and find something and everything was according16:21
to plan I start working part-time after that I start full time everything is perfect16:30
and when this happened my son is uh he16:35
was seven he was in grade two in October now he's eight and he's gonna be grade16:42
three in September my reaction uh was like what we gonna do16:48
I'm working full-time my husband is working full time at home we live very16:53
close to the school and uh he said at the beginning I can go17:00
during the two nutritional break I can go and administer insulin and check on17:05
him but how long this is gonna continue I found out then that there is no17:12
full-time nursing the Canadian school but our nurse told us you know what17:18
there is a option I can connect you with the agency nurse agency and they can17:23
send nurse during the two nutritional break to administer the insulin according to the doses from the17:31
pediatrician we spoke the engine with the agency they said there is a shortage of nurses that was October there is a17:38
shortage of nurses I I don't know how long this will take17:44
for the nurse to be available for you but you have to know if there is a17:50
shortage in the future even if you have a nurse at some point they will not be able to come or if she is sick and they17:58
cannot find replacement so we said okay let's let's see18:03
and I was working and in December before Christmas break they contact us they18:09
said there is a nurse she will come during the nutritional breaks to administer insulin and after that she's18:15
gone that's it only for the insulin but I already had two months experience18:24
and I saw my son still thank God I know some people don't like honey morning18:30
period I love it this is the period in which their pancreas still producing18:35
some insulin and it's very unpredictable and I saw if the nurses coming18:41
administer the insulin according to the insulin to Garb ratio and he go hypo18:48
hypoglycemic where is the nurse we have approximately 600 kids in our school18:57
situation happens you don't have a nurse so that was very surprising to us and at19:06
after all me and my husband decide uh that I have to stay at home19:14
and manage my son blood glucose levels I19:21
never thought it never crossed my mind because I never need we never needed for19:28
anything and uh I'm very very grateful19:33
because our school is amazing we have amazing support from our office star uh19:41
stuff from the principal from the teachers our experience is super positive but they work with me I'm19:49
available he doesn't feel good I'm right there for in within a minute I watch his19:55
Dexcom I follow the Dexcom the second I see he's going down I call them they20:01
react but this and this is working super great because I'm available and this kit20:08
because of that my son doesn't have any any negative experience20:13
and that that that is my goal because he's gonna live with this forever20:20
I want him at least to have a nice and carefree childhoodDiabetes management at school20:26
I wish I had known and truly believed that it is possible to incorporate20:32
diabetes management into our everyday lives including at school20:37
um I heard this from people but I didn't really understand how that could be true I didn't see it when I joined online20:43
communities or spoke to other parents um it all seemed like a lot of conversations of overwhelm and stress20:51
the constant rhythm of blood glucose grafts and alarms and considering my son20:56
was in grade three I just didn't understand how I could manage the demands of this condition and live our21:01
lives without this taking over um and I have two boys so I wanted to be president we focused on both of them21:08
um so I had learned through our tragedy we could do hard things so I guess I just21:13
decided that things were now going to be even harder and needed to figure that out um so pray for strength and keep going21:19
it's what I do uh I was fortunate that my son's school administration and teaching teaching21:25
staff were so supportive of my family and wanted to do anything they could to have my son back in class uh he's21:32
amazing social athletic students we really wanted him to see him Thrive and21:37
be back with his friends and he was feeling and looking so much healthier and active uh and back to my fun21:45
energetic eight-year-old um it's so important to partner in your child's care together with the school21:50
and as a parent to really be a driver of setting them up for Success you're both21:56
still learning but there are key ways to get ready uh the first is open communication is a priority you have to22:03
discuss with the teacher the easiest way to get in touch with you what requires a check-in when snacks and Juice need to22:10
be restocked and so much more my son's teacher actually spoke to his class about t1d before my son returned so they22:18
were aware of what he had you know what he was dealing with and how they could support him when he returned our22:24
principal through a colleague found out that our school board has a care plan uh document for t1d so we used that and22:30
completed it to outline his diabetes management at school uh next preparing for lunch and snacks22:37
is really important uh in absence of a nurse coming to school we didn't have a22:43
nurse there's a shortage so I started going into the school every day to administer insulin for a few minutes22:48
before lunch it is not practical when you're working um I had a bit of flexibility at the22:53
time fortunately my son felt comfortable giving himself injections within a few months after his diagnosis and that was23:01
a game changer um I give him carbs in the same range every lunch so he'd use his chart with23:07
his carb range his blood glucose um and administers what he needs so again I'd set up a process with this23:14
school um where they could have an adult supervised him and they would text me on the dose and I would just know it was23:19
done more recently he has a nurse now come to the school and they often let me23:24
know how empowered and knowledgeable my son is about his condition which makes me so proud23:30
um you also need to ensure office and classroom have stopped emergency cats extra snacks and also the clear process23:39
of who's going to take those when they have fire drills or school trips how is23:45
that all going to work there's going to be Kinks to work out as you're learning but with good communication and staff23:52
like I have at this school that go belong Beyond going through the motions and genuinely caring about my child23:59
we're such a good team supporting my son together I really felt it was important to24:05
prioritize his sense of belonging in the classroom you can ask teachers to give you a heads up if there's special snacks24:11
parties activities and sports at school you can as a parent make a choice if you want to participate if you want them to24:17
have the snack participate in the sports um you can make it happen it just takes some planning24:23
and then finally remember your child is at the center of all this initial swirl while we all work to monitor blood24:30
sugars and shuries cared for we need to remember he's so much more than this condition the first questions at the end of the24:37
school day they need to be about the silly thing you did at recess the new sport he learned in gym it's got to be24:44
about the kids stuff um and then the diabetes stuff I'd say my best piece of advice forAdvice for parents24:50
parents is beware of analysis paralysis um that term the more information and24:57
data you have it can sometimes lead to questioning what to do or even worse or25:02
doing nothing at all um t1d is overwhelming there's so much information out there and you have so25:08
many data points of blood glucose sugars taken every few minutes you can obsess over and react to25:15
um so if you've educated yourself if you're learning about how activity and food affects your child you prepared key25:21
people to support them their blood sugars are in target range you know you don't necessarily need to keep seeking25:27
out new ways of doing things every day be compassionate with yourself be patient you know trust the process and25:34
education that you've been given obsessing over the numbers can really lead to lack of sleep over treating and25:41
just a general sense that our lives revolve around diabetes instead of we take it with us as we go about our life25:48
um so me I really can align it with grief and sadness you know I take that25:53
with me every day and yet I'm living my life with my boys uh the best I can right now25:59
my focus on day one was for my son and I to be in this together he learned everything along with me26:06
um counting carbs insulin delivery advocating for himself how activity affects him I want him to be comfortable26:13
understanding his condition and not have complete Reliance that Mommy will do everything26:18
um I often ask him you know how many carbs do you think that is at restaurants ask them how much insulin he26:24
should be getting what we could do next if his blood sugar is lower high they're great teaching moments to empower your26:30
child uh and finally for your child's well-being it's really important to model as a parent what calmly going26:37
about diabetes management looks like so they're confident you can take care of them and that you know how to respond26:42
that's really the key knowing how to respond to highs lows sick days unexpected events they are going to26:49
happen your child will be looking to you and will start to model how you present26:55
yourself the language you use is important it's not about good or bad numbers it's not about blame and looking27:01
back it's really about responding and moving forward with your child especially in dealing with whatever you27:07
face and learning as you go together there are times of course when I am just27:12
done I'm tired of injections tired of alarms so I need to take a deep breath or a27:18
break and then Focus again on what matters that he is healthy and safe and27:23
that's what matters most uh so we are now almost a year into thisAdvice for parents after 10 months27:31
in like 10 months yeah 10 months into this and27:37
um I think it's very important um for parents at the very beginning when27:45
they're receiving this diagnosis grief cry be mad be sad but just do it27:55
at the beginning and move on don't keep it don't don't don't try to be uh strong28:05
don't grieve accept it go to The Grieving do this at the beginning28:12
because if you don't do it it will come later for sure 100 and after that28:18
focus on the focus on educating yourself28:24
start reading books they're amazing books out there it's not necessary for28:30
them to be a medical professional they're amazing books out there can I share amazing podcasts like um this for28:39
me was life changer Game Changer if you want to28:46
have a great management if you wanna have the understanding of the real life28:54
management of type 1 go and listen to The Juice Box podcast29:00
this I did I was listening like crazy at the beginning to wrap my mind29:07
because you have your team behind you but you gonna be the best29:14
endocrinologist in your kids management people with the best knowledge of this29:21
disease are people that are living it follow they have Facebook group this29:28
Facebook group it's not only great resource of information like real life29:33
information but also you can vent you can share your29:39
victories you can share your your sadness you can share your struggle they29:45
gonna support you and this is huge because some people some people they felt they feel very29:54
depressed and they struggle when they receive this and this is so so normal29:59
you cannot wait months to see a some therapist after months you're gonna30:06
be a pro of course you will need therapies during30:12
the way but it's different at the beginning you need the help right30:17
away you need to see that someone is dealing with this you need someone to30:22
give you real life advice how to deal with this you need to see someone that30:28
you're not crazy that you're not failure you receive type 1 diagnosis for your30:33
kids every Healthcare professionals start telling you oh it's okay30:40
he can eat whatever he cannot everything he wants just just count the carbs those30:46
insulin go and you go and you go back home with this insulin30:52
which is amazing how but also is very dangerous thing and you don't have medical background31:00
and as I always like to share this example some kids like to31:07
start the day with cereal only people that live with type 1 knows31:12
how trick is to those for cereal and imagine this mom super stressed or31:18
dark or whatever caregiver the doctor told me he can eat whatever I31:24
just count the carbs and I dose insulin and they eat cereal the caregiver does31:30
insulin and everything goes in a very very wrong direction how the caregiver31:37
feels like a failure so I really really wish31:43
people to start to stop telling caregivers of newly diagnosed go into it31:49
go let let them be kids let them eat whatever yes you can do that you need31:54
time you need knowledge so that's why my huge and very friendly32:00
advice to caregivers educate yourself read books listen to the podcast I'm telling32:08
you this will give you the whole knowledge and you can do it slowly32:15
slowly slowly you will do it and automatically mentally you're gonna be32:21
okay for the school the the other motto I have and my son32:28
has now also always be prepared32:36
nothing is scary when you are prepared always be prepared32:41
hypers hands hyperglycemias happens be prepared32:51
what I did I can share what I did with my school and I really hope all the32:56
parents have this support from their school after the diagnosis I immediately call33:03
the principal she was amazing she was like so supportive and she said you know33:09
it's very hard to have all the stuff together at the33:15
same time so we can have a meeting with you but I will do my best and she did it33:21
all the teachers were there the admin staff and we sit in a room my son was33:28
with us and I start educating them they were so supportive but also I can see33:35
how stressed they are the second the second I start sharing what can happen33:41
if he if he's hypo and I saw you know33:46
they were they were genuinely very worried and that's okay33:53
but I said and they were so relaxed when I said we will be there my husband or me34:00
you can rely on us all the time we're gonna follow his Dexcom and we're gonna34:06
work together but they were and after that with the office staff with the office admin which are who are great34:13
also we start writing medical care plan and we decide every September we will34:21
change the medical care plan as needed if the changes are there and the other34:28
thing I very much appreciate I told them don't treat my son differently34:34
if you have to push him hard through something push him don't feel sorry34:41
about him and they and they doing it and I love this people need to be educated uh more34:49
in school and everywhere people have to hear more about type one honestly34:55
organization like diabetes Canada they play huge role35:01
in educating people and raising awarenessOutro35:08
thank you so much for joining us for this very important topic and thank you to Sylvia and Krista for sharing their35:14
stories and Shining a light on the experience of raising a child with diabetes again this topic may not be35:20
relevant to everyone living with diabetes but we do hope that you found it interesting and learn something new35:26
please take the opportunity to keep the conversation going by posting a comment in the comment section on YouTube you35:32
can provide this feedback about the video by clicking on the link to the feedback survey in the description box35:38
if you have ideas for other topics you'd like to learn more about you can include that in the comments or feedback survey35:44
as well for more information about diabetes management please visit our website at35:50
diabetes.ca you can also email us at info diabetes.ca or call our infoline at35:57
1-800-benting that's 1-800-226-8464 and speak to one of our36:04
information and support Specialists who can address your needs thanks again for joining us and see you next time36:12
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Category Tags: Children & Adults, Management, Special Populations;