The following interview is with Ammey, a mother whose children have multiple medical and cognitive conditions. Of particular interest to me is her situation with her oldest son, Khy, who has both juvenile diabetes and autism. Ammey responded to my blog, Do You Have BOTH Juvenile Diabetes and Autism in Your Family? Here is her story.
1. Tell us a little about your family.
My name is Ammey, and I’ve been married for thirteen years to my husband Mikel. We have three children: Our son Khy is 14, Kaine is 11, and Lilli is four. Khy has autism, asthma, type 1 diabetes, VUR, and chronic migraines. Our son Kaine has pervasive development disorder-not otherwise specified (PDD NOS) and narcolepsy. Lilli has asthma and whole body eczema. We laugh a lot in our house. Sometimes the literal interpretation of our boys’ comments creates very amusing jokes. The boys are phenomenal artists, and they draw all the time. Our home has a lot of pencils, paper, and erasers lying around.
2. Which diagnosis did your son receive first, and how old was he? What were the symptoms you observed? How did you handle the diagnosis?
Khy was diagnosed with autism first, at the age of 8. He had very poor eye contact, repetitive behaviors like finger flicking, complex spinning, very narrow interests and echolalia. He was reading and drawing constantly by the age of 3. We were originally told he had Aspergers, and then they said it was autism. I felt speechless and frustrated. I missed the autism signs all those years, and so I blamed myself at first because he did not receive any early intervention. I dealt with my frustration by insisting he start whatever therapy he could at his age and worked hard with him on his deficits, focusing on his strengths. He became a regional center client and we were able to enroll him in a social skills program for 9 months. We used respite care, and we participated in a research study at UCLA.
3. Which diagnosis came second? How old was he? What were the symptoms you observed? How did you handle the double-diagnosis?
Type I diabetes was the second diagnosis, which came right before his 12th Birthday. It seemed like he was going to the bathroom all night, and he was drinking liters of water before bed. He seemed lethargic and confused. The day he was diagnosed, he told me with his usual flat affect that his vision “went blurry like the TV when it’s on a bad channel.” I thought he might have had a seizure but I observed him go fill up his water bottle again, and it dawned on me he was having symptoms of Diabetes. I had Gestational Diabetes and I take Insulin when I am on Prednisone, so I immediately got my monitor out and checked him. It read HI. My heart stopped for a minute and I had to read in the instruction booklet what that meant. HI meant the reading was over 600. I tested myself, and his brother, and we both had normal readings. I called the Hospital.
At the ER, when the nurse got his labs back she said, “It’s 889, mom.” (Normal is between 80 and 120.) He was nearly in a coma. Khy was taken by ambulance to another hospital and there it all began. I remember the first thing my husband and I said to each other is, “How bad does this kid have to feel before he will tell someone?” We had no idea that he was so sick. Just a few months prior to this, he had to have nurses hold him down to get a shot! So he shed a lot of tears in the five days in the hospital, but got over his fear of needles soon enough. I handled it okay, but I was very concerned about how to manage his diabetes if he couldn’t communicate symptoms to me. It was tough, especially the first few months, getting the schedule of injections and food straight. I just tried to pull myself up by my bootstraps because I had to for his sake. I felt overwhelmed, but just tried to keep going hoping it would get easier. It did with time.
4. What is the hardest thing about dealing with the two conditions combined?
Having to manage diabetic care while dealing with the symptoms of autism has been a challenge.
First, we have to prompt him, prompt him and prompt him to check his sugars, eat, etc. It has been exhausting for us all. It is something we must do, so we do it.
Second, he has never communicated pain, or feeling ill. We are always so concerned about whether he will communicate with people when he needs sugar or when he’s feeling bad. TYPE I diabetes is life threatening. He will always require daily support with living skills now because his difficulty communicating and deficits with daily living skills puts him in danger.
Third, his autistic need for elaborate routines makes treatment time-consuming. It is better with the pump because he no longer goes through a 10 minute routine before he injects many times a day. Now he just checks his BG and boluses (gets insulin from his pump) and eats. He still has to place the alcohol wipe on the wrapper, place the test strip here, and blow on his finger a certain number of times, etc.
5. How is your son doing? What kind of educational program is he in? What medical treatment does he receive?
Khy is a survivor. He’s improving on the pump (pumping since May 2007). His A1C (blood glucose average) is 6.8 (excellent). WOW!!!!
He is in general education classes with support from special education teachers. He is a very talented artist, but doesn’t have any friends. When he forgets to go the office to check his blood glucose before lunch, they hunt him down.
He sees a pediatric endocrinologist, a neurologist, and since they have found protein in his urine for the second time in six months, he’s also seeing a urologist and nephrologist. Today the doctor said she is very concerned and now so am I. He physically feels very tired all the time.
6. What strategies have worked in your home to make things run more smoothly?
- Pumping – He was very resistant to even learn about the pump (he resists change) but I knew it would help his independence and also his BG control, so I insisted we go to a conference on pumping. He was very upset anytime I brought it up but he conference was a weekend we all needed to connect with others. He decided to try the Pump after seeing all the kids push buttons to eat vs pushing syringes. It has broken his routine time in half at least.
- Inclusion – Everyone is involved with reminding him to check his BG, and eat healthy. Even his brother who has special needs of his own helps out, as does his 4 yr old sister. It needs to be a family affair. We all take responsibility for looking out for him.
- Reaching out - Seeking support, information and news which empowers us to make creative choices or think outside the box during a crisis.
- Prompting, Prompting, Prompting - Not expecting him to remember when to check, bolus or change his site. He can do it all he just needs a little prompting!
- Organizing – Supplies all go in one place, glucose monitors kept in the house and car, and a kit for Karate or trips including a snack, monitor and emergency supplies.
- Think positive – Having a positive attitude as often as we can helps us all focus on success vs. failure.
- Routines – For showers, checking BG and changing Infusion sites.
- Meditation – Deep breathing, massage and music. Dealing with so much is stress inducing. We have to make a big effort to relax sometimes but it is so important.
- Giving praise – Building a portfolio in his mind of all the things he CAN do, not what he can’t.
- Being patient - He may not learn self-care, living and social skills as fast as other kids, but with encouragement, patience, and persistence he will
eventually reach his own potential.
7. What words of advice would you give to parents who are in a similar situation?
Breathe, take it one second at a time and do not give up hope. Children with autism can learn–it just takes a lot of effort and time. Even if they only take a small step forward, that’s one step they would have lost if you just accepted their deficits. Juvenile diabetes is not the end of the world; it’s more like a big bump in the road that will always be there. You have to deal with it as proactively as possible by gathering information so you can make educated decisions when needed. Going to the Children with Diabetes Focus On Pumping Conference is something I recommend to anyone thinking about switching their child to the pump. There was so much support, laughter and learning going on the entire weekend. Khy finally did not feel alone anymore, and my husband and I left feeling inspired to manage his diabetes with all the new knowledge we gained during the conference.
Here are four simple words to live by: Connect, learn, laugh, and live.
If you would like to share your special needs parenting story, visit my website at www.kristyncrow.com and email me. Your story can be a source of information and inspiration for other parents! Some links on this blog may have been generated by outside sources are not necessarily endorsed by Kristyn Crow.