Working while raising a child with T1D

When a child is diagnosed with type 1 diabetes the world that the child and their family once knew seems as though it will never exist again. Parents of a T1D tend to miss work more often because the main focus for the parents now is to make sure that their children are happy, healthy, and safe. The Family Medical Leave Act (FMLA) becomes a crucial part of the parents work routine as they have an increased need for time off work to become educated on this new lifestyle which includes daily blood sugar checks and insulin injections, recurring education classes, quarterly endocrine appointments, staying home with their child during sick days, and extra meetings with school staff to make sure their child's diabetes is managed well.

My daughter, Alyse, was two and a half years old when she was diagnosed with T1D. That was six years ago and at that time I was working outside the home as a Prescription Benefit Manager. I was very thankful for FMLA because I had become the primary caretaker of my child when it came to her diabetes. After her diagnosis, I had to take time off from work in order to teach other family members how to manage Aly’s blood sugars and insulin doses. I continued to work outside the home while using the FMLA benefit for three years until I made the decision that it would be better for her care and my sanity to stay at home. At home, I could be more readily available to go to her school when needed, take phone calls from the school nurse, make appointments at her school with the staff to discuss diabetes care, attend her endocrine appointments without feeling like I was letting my employer down. I could now explore my newfound passion of diabetes education and advocacy.

A year after my decision to stay home, I decided to open up an in-home childcare that would specialize in children diagnosed with T1D. At that time, I also began my second career as a diabetes advocate. When I started "Hope for Aly" (our diabetes education effort), I never expected to learn as much about T1D as I have to date and continue to learn daily. I now have my “9-5” job providing in-home childcare but also get to have my passion/hobby of diabetes education as a second career on the weekends. I am currently working as a Glu Ambassador to helping to spread the word about this diabetes support community which also helps to support research all from the comfort of your own home. I’m also looking into starting a non-profit in the Kansas City community that will focus on T1D support, education, and advocacy.

I know that parents who have a child diagnosed with T1D will be able to juggle everything from family, career, to sanity. I do, thousands of other parents do it, and newly diagnosed parents will too.

Article written for Glu

Fear

Try not to let fear keep your from letting T1D child act like a normal kid. They will be ok, they can still eat that ice cream and have their cake too, still sleep over at friends houses, still drive a car, date, go to parties, play sports, and everything else a "normal" child does. Yes I understand it takes extra planning ... Yes I understand we as parents will still worry ... Yes I understand you probably still won\'t get a full nights sleep ... BUT it is ALL worth it for your child be a "normal" child and just have fun.

Another Diagnosis

My daughter Aly was diagnosed with Type 1 Diabetes 1/20/2007.

In may of last year we received ANOTHER diagnosis ... ADHD.

Ever since Aly was little she has had a problem staying on task, getting distracted, very emotional, always "on the go" with body and mind while also never being able to focus well in school. For several years we tried to shrug it off as Aly being Aly and attributing it to her age .... Well last year at the schools push we finally had Aly seen and tested for ADHD, it was not easy to walk into another Dr's office for another visit that may yield ANOTHER diagnosis for my little princess but like we as parents do I knew I had to do it for her. Upon our 2nd meeting with this Dr. Aly had the testing done and what we learned from the results was quite helpful. We learned that Aly was only able to translate 1/2 of what she was learning into actual product of work .. She was able to grasp the beginning and end of conversations but would forget the whole middle portion that was discussed or taught.

Once we received the diagnosis of Combined ADHD we started trying to assist her without using pills .. we tried many different avenues in the classroom and at home but sadly none of these options were working after almost a year from diagnosis.

A few weeks ago we went and spoke with Aly's pediatrician about the diagnosis and what our options were now ... we knew ADHD meds would be prescribed but we did not know about the different kinds or anything. When we left that appointment with her pediatrician we left with a prescription for Vyvanse the lowest dose with instructions to start it promptly the next day.

I must say that this has been one of the best moves that we as parents have made because just like insulin keeps her alive ... her ADHD meds help her perform at the quality that we knew she was capable of. She focuses better, better handwriting, very confident in herself, able to get work done in a timely manner, remembers schedules and directions, and rocking in the classroom.

I am very proud of my amazing princess who is dealing with T1D and ADHD but NEVER let's anything stop her or get in her way!

CHECK DON'T GUESS!

We need to get all pediatricians, ER Doctors, and Urgent Care staff to ALWAYS CHECK BLOOD SUGAR when a child is showing the classic signs of T1D. DKA can come on suddenly and have deadly results when T1d is not diagnosed properly. A blood sugar check that would take less than 1 minute and cost under $2 could SAVE a child's life. We aren't talking scrapes and bruises here ... We are talking LIFE and Death! Please help educate and make sure that your pediatrician knows to always CHECK .. DON'T GUESS!!

Thankless, endless, and exhausting

Thankless, endless, overwhelming, and exhausting. When you hear these words, what comes to mind? Anyone think: Being the parent of a Type 1 Diabetic? If so, you are not alone. You are being genuine and real. I think so many parents are afraid to be honest, afraid that if they go down that road, it signals that they are horrible and unworthy-- somehow broken, unloving and undeserving. Believe me, you are none of those things. You are tired. Everyone knows that amidst those moments of frustration, you celebrate amazingly tender, loving, joyful and rewarding moments. Wrap it all up and that's parenthood. Don't let those dark moments define you. Smile and know that around the corner there will be joy and that joy is unmatched. You are living the dream!

St. Patty's Day Parade

Hope for Aly participated in our 1st Lee's Summit Emerald Isle Parade on Saturday 3/16. We had about 10 people out at the parade and we handed out flyers with T1D symptoms, candy, shirts, and necklaces. We reached over 400 people with T1D information and many more with our other goodies.

We look forward to participating again in the 2014 Parade and making our float even bigger and better.

If you would like to sponsor our float for 2014 please contact me at hopeforaly@gmail.com

I have a dream

Some people dream for lots of money, expensive cars, vacation homes, ..... I dream about educating more people about T1D and finding a cure. My goal .... Someday have a large amount of people affected by T1D converge at the NYC Thanksgiving day parade, have a float and hit the masses with T1D info ... And someday have walks when everyone is CURED. 

One can dream right :)