On February 12, 2015 Corey was diagnosed with Diabetes Type 1 and spent 4 days in the hospital learning about diabetes care and getting his system back on track.
We are not sure if this was caused by taking depakoate and lamictal which have black box warnings from FDA for pancreas damage or if it would have happened anyways from a genetic predisposition which we do not have markers for yet. Type 1 can start from a serious illness that triggers the attack on the insulin in the pancreas. In January Corey had a high fever for several days that was hard to control. But in November prior he also had indicators for high blood sugar that were not addressed by the pediatrician at the time. To our understanding this is not related to pachygyria.
The first month was very rough for all of us getting used to the multiple shots and new eating routine with specific carbs 6 times a day. The best thing we did was to start a reward system for each shot. He would get a reward if he did not bite, kick or hit us. The shots took 45 min. to an hour in the beginning with 2-3 people holding him down. He did not understand delayed reward as much as he did an instant toy, movie, iPad, etc. With the toys he progressed to 1 person giving the shots in his routine location. Then we hit the jackpot. His best friend was over and we suggested that Nick could sleep over if he let us do the shot in 5 min. It took 3 min. Yeah! We had Nick sleep over that entire weekend and started a new trend. Next we did the same reward but had Corey relocate to a new site and a new shot site. It worked. At 2 months we do not need the rewards every time but only when he asks for it or when we try something new. Our latest adventure is giving the shots in public restaurants to adjust to our new normal.
For those who have similar challenges with autism or autistic like behaviors and diabetes, see Facebooks support group – https://www.facebook.com/groups/autismandtype1diabetes/
You can also find support from your local diabetes chapter of Juvenile Diabetes Research Foundation (JDRF).
Best wishes to each of you. We were told it would take one year and in the first week that really freaked me out. I didn’t have a year to get this in order. Give yourself a month – 2 months. It really does get better. Get support from everyone.
The best advice I was given was to accept the meals from friends and church for the first month while you are overwhelmed with forms to fill out, starting school again with a 504 or IEP changes and training, new eating and routines, etc. It took a good month to find order and another couple weeks with our immediate rewards system to have Corey used to it. He still says ” I did that already” but we are still able to give the shot.
We also changed the shot name to “Pen”, blood glucose check to “number check”, and learned to relax about this new world. It is not an exact science. You will not get the same outcome everytime. It’s ok to be high one day and low the next or within hours. Find what numbers you are comfortable with your child. Treat to the number and move on.
We carry snacks that have the amount of carbs we need and can raise a low blood sugar. Juice box, fruit snacks – Motts or Sams brand, and cliff bars. You will find what works for your child too and easy for you.
For the rewards, we realized it would get very expensive if we went to the toy store all the time. That was saved for big changes. We asked friends to clean out their toy boxes and that worked great. Corey had a variety of surprises to choose from that we stored in paper bags to make it more of a surprise – we also numbered the bags in the beginning. Friends had another option to feel good about helping out without having to make a meal. Later the too many toys were recycled to the therapy offices for their treasure boxes.
Be kind to yourself. Do what brings peace to your family and don’t worry about what others think. You will survive and you will be stronger for this. And if you are still at the hospital get a hug from the nurse. They can be your best support for the few days you are there. You can do this. If you are a parent of a child with autism you already have learned so many ways to survive. Remember you are an amazing parent. You can do this!!
If you would like encouragement, a person to bounce ideas off of and brainstorm, or just need to know you are not alone… you can email me at firstname.lastname@example.org.