C-PTSD is what people develop after they've been kidnapped, held hostage, imprisoned, raised by an abusive parent… or when they happen to care for a physically or mentally ill family member. The unifying thread in all these circumstances is that you are confined within a relationship and must adapt yourself psychologically as a means to cope. According to wikipedia: "CPTSD is not a personality disorder – rather it is often a case of survival reactions to trauma becoming a fundamental aspect of the personality, in response to living with a personality disordered individual." In the instance of special needs parenting, that "personality disordered individual" is your child.Read More
Last fall I witnessed a beautiful thing.
My son Mylo is 9 with Type 1 Diabetes, fully included in 2nd Grade. He was included last school year too, but spent most of the year home sick because of an immune deficiency (SAD) -- so he didn't get a lot of time in his 1st grade classroom. Now that he's been getting IVIG, he started school in the fall last year. He is the first student with DS ever included at his school.
It was a bit of an adjustment after being home sick for nearly a year -- and those first few mornings back he didn’t want to go. One morning was a particularly rough, and I was laying awake in the night full of anxiety and doubt and worry about all of it.
Finally, I resolved that I needed to prime Mylo in the morning before school to get him pumped up. So one particular day last fall I did just that. From the moment he woke up, I praised him for being a big boy and growing up and getting smarter, and doing so well getting up and going to school every day. He loved me talking to him in this way, so I fed him a super positive narrative about how important it is to practice writing, reading, math, and making new friends. I told him he was going to have a wonderful day, and he got out of the car excited.
Usually we walk into the classroom to get a head start on breakfast while the other kids assemble into lines out in the yard. But that particular morning, my son wanted to join them. So we walked towards the assembled student body. We had never joined his class in the yard before, so I didn't know where they were. Suddenly, two little boys ran out to meet us, saying "Mylo!" They each took hold of Mylo's hands and walked him back towards the group. Another little girl ran out to support their efforts.
I watched in amazement as his classmates circled around him and engaged him and held his hands. My son can be a bit flighty when it comes to crowds, but these kids wanted to help Mylo have the experience of standing with the group and walking into the class with them. I waved goodbye and walked off to hide and watch from a distance, prepared to sprint after him if he bolted. Through tears of joy, I witnessed with silent wonder as these two little boys held Mylo's hands and helped him walk across the yard to his classroom.
Even now as the school year is coming to a close and I have seen countless interactions affirming Mylo’s popularity with the kids in his class, I remain astounded. In Mylo’s class, it’s been a win-win for all the kids. Mylo benefits from the typical behavior they model, and they benefit from learning how to be a good friend to someone who is different — to care for this individual as a member of their group. And yet, not everyone has had a positive inclusion experience, so it cannot be denied that inclusion is still a trial and error process. Every circumstance is comprised of unique factors; and unfortunately I suspect many unsupportive teachers inadvertently hinder the benefits of inclusion simply through their own lack of faith, ignorance, or an unwillingness to even try it. Because kids take the bulk of their cues from adults, how the adults approach a situation often defines the children’s experience of it as well.
Nevertheless, I believe inclusion is a pathway to a better world. If we deny ourselves the opportunities to know each other in all our abilities, races, ages, and forms, then we deny the complete knowing of ourselves.
Two things that I think have really helped foster Mylo's relationships with his classmates have been weekly "recreation therapy," where a therapist comes to help teach Mylo and the other kids how to play with each other. I mention this because when I brought up Recreation Therapy in Mylo’s IEP, it came as a surprise that I would even know to ask for this service. Apparently this is not a service that is advertised though it would likely benefit a number of kids. Mylo also has a one-on-one aide who actively engages the other kids to help her provide support and attention to Mylo. She does this by modeling ways in which they can help Mylo and interact with him -- for instance, at lunch time she asks the kids, "who wants to sit with Mylo today?" and culls together a little group of lunchtime friends to keep him company at the little picnic table (the tables under the bandstand 20 feet away are too noisy for Mylo at this time). Much to everyone's delight, there always seems to be a group of kids who jump at the opportunity. Also, when his blood sugar is high and he needs to go outside to run it off, there's always a few who are eager to go out and run around the yard with Mylo. Boys and girls alike enjoy holding his hands to help him stay on track when they are traveling together from one part of the school to another, and sometimes even argue with each other about who gets to sit next to him and help him.
Mylo is fortunate to have gone to the same public school since pre-school, making him familiar with a lot of the other kids and teachers there. Many of the teachers at his school are passionate about special education, and have taught there for over 20 years.
The little things make a difference. I am so pleased to share this beautiful story and the hope it carries.
Last night at the Ashram I was telling the guests about when Mylo was first diagnosed with Type 1 Diabetes. It was a challenging time. For weeks he had been drinking a lot of water -- like, at least a quart a day which is a lot for a two year old. What's more, he was loosing weight, nauseous, and weak. I suspected it was diabetes, but when you are dealing with a non-verbal, developmentally disabled toddler sometimes it’s hard to know what exactly is going on.
One day, Mylo drank and peed so much, he overflowed each fresh diaper and every single pair of pants we owned. His lips were chapped, and he was desperately thirsty for more. We got in the car at 2 AM and headed for the emergency room. I told them I thought he had diabetes. They tested his blood sugar and said "you're right, his blood sugar is over 600mg/dL." We were immediately admitted. We spent the next five days in the hospital, working to stabilize his sugar with insulin and training me how to be his caretaker.
It was like hitting a wall -- I had never considered the sugar in the foods I had been feeding him, and now I would need to count every single gram of carbohydrates for everything he ate, and provide him with a corresponding dose of insulin before he ate one bite of it… FOREVER. To make matters worse, I would have to predict what I thought Mylo would eat, and if he didn't eat something that I served him, I would have to calculate how many remaining carbs I needed to supplement with something else of equal carbohydrate value. All of his insulin was to be administered via subcutaneous injection, and every two hours I would need to prick his finger for a little drop of blood to check his sugar level. Careful log notes would need to be taken of everything, all the time.
For better or for worse, I had inherited the role of being Mylo's pancreas.
Those early days of November 2012 Mylo and I were handed a life sentence; and unlike parents of typical kids who have diabetes, Mylo will likely always need someone else to manage his nursing care. Due to both his behavioral challenges as well as a rare auto-immune condition called "lypoatrophy," Mylo cannot simply wear a pump. All of his medication must be delivered via injection.
For children, diabetes management happens on a "basal bolus" system -- which means you give them two types of insulin: a slow acting "basal" insulin (Lantus, Levemir) to generally suppress sugars throughout the day, and a fast acting "bolus" insulin (Humalog) to either match carbohydrates consumed, or to help bring down a high blood sugar quickly. The time it takes bolus insulin to work is about 2-3 hours, which means you cannot give a second dose before the first one has finished working. Hence, a careful log must be kept so that you don't inadvertently overdose your child with insulin, and drive all the sugar from their blood stream. If the blood sugar gets too low, you run the risk of seizure and coma, which is why diabetics always travel with juice and candy — so they counteract the side effect of their medication with sugar.
My wet bar has become a nurses station, and we never leave the house without our trusty “red backpack,” which holds our diabetes logbook, medicine kit, and an assortment of snacks and other supplies.
Managing diabetes is a bit like a game of ping pong. All day long the sugar goes up and down. As a care giver, you try to play the game to keep the arc of these ups and downs within a certain range. You do that by being attentive to nuance and understanding how the body responds to the carbohydrates in certain foods, as well as how the needs of the body change throughout the day. Mylo gets different doses of insulin throughout the day, tailored to his bodily rhythms.
In the beginning, all of this was a massive anxiety and chest pain inducing nightmare. Gone were the days when I could just feed Mylo "whatever." Now we had to eat a pre-planned meal on a schedule, and EVERY TIME there would have to be this carbohydrate counting ritual. I quickly learned how many carbs were in everything. I made charts for myself, and I was suddenly conscious of the nutritional values of food packages in a very different way. I never imagined that I would be one of "those mothers" toting around a bag of medical supplies and pulling out a kit of syringes every time we have a meal. Let me tell you, I am hyper aware when I go out to dinner of the experience I am creating for our fellow diners. Having a kid with Down Syndrome is uncommon enough and always stirs up feelings whenever we encounter someone; but the whole diabetes ritual is like an added curiosity. We seem to create a moment of reflection for others: maybe they are feeling sympathy or gratitude for their own typical children, or empathy for our situation? Maybe they are reminded of their love for someone else in their life with Downs or Diabetes? Or maybe they could simply be the type of person who sees people like Mylo as special in the way that four leaf clovers are special…
Whatever the case, we do not pass unnoticed, especially when I pull out the syringes. It’s not everyday you see someone stick a needle in their kid during brunch.
As someone who has avoided the treatments of western medicine my whole life, Mylo has brought me to a heel. When he began treatment for diabetes, his health dramatically improved. He put on weight, the shadows under his eyes disappeared, and he stopped being so sick and thirsty all the time. I humbly bow down to the power of insulin. It is so simple, and so powerful. And for someone small like Mylo who weighs about 50 pounds at this point, he is still (6 years later) on the same 1/4 unit correction scale as when he was first diagnosed. That means he gets 1/4 unit of insulin for every 50 mg/dL of sugar in his blood over the value of 150, to bring his sugar levels down into range. Do you know how small 1/4 unit is? It's something of a challenge to draw up, even for seasoned nurses. A quarter unit of insulin looks like the head of a pin. I put a speck of medication under his skin, and it works like magic.
If you've read my backstory, then you'll know I went through a dark night of the soul before piercing through the curtain of my own chrysalis. The diabetes diagnosis came right in the middle of it all. About a year into Mylo's journey as a diabetic, I began to alter my emotional approach to the situation. For months I had been living in a state of grim resistance to my diabetes kit and logbook. It was a constant chore, a never ending math problem; and to make matters worse I had (as often happens) on rare occasions, accidentally given him fast acting humalog when I should have given him slow acting lantus -- oh the panic and the ensuing carb fest to head off a massive dip in his blood sugar... Sadly this is so easy to do. The repetitive hand motions of drawing up the medication become so automatic that sometimes your hands want to do the business without help from your brain -- sort of like how your body learns to drive a car. This is why you should never talk to nurses while they are drawing up medication.
But I digress...
I decided I couldn't hold on to all of that anxiety and dread and avoidance; my life was my life and if I was going to have any sort of peace for myself I had to embrace the situation. I decided to pair an act of meditation with his daily blood sugar checks and insulin doses; I made myself present and focused, not only on clearing my mind and focusing on the task at hand, but also on the repetitive movements my hands had to perform. I thought to myself, "if this is the little dance that my hands must dance with these instruments every 2 hours, then let me bring as much presence and grace to these movements as possible. Let me perfect them." So I started adding in some finesse and precision to my moments, and I surrendered to the reality that the only thing I had to do in those few moments was to care for my son to the best of my abilities. Nothing else was more important.
Now it is the winter of 2018, and 6 years ago that Mylo was diagnosed. I am at ease with Mylo having diabetes, it is part of who he is and it has shaped me in beautiful ways. I know so much more about sugar, which has improved my own health. Most of the carb values I have memorized at this point, and since I work as a chef I have a good sense of portion and weight, so I can construct a meal for my son with relative ease compared to the early days. On days when I am able to keep his sugar flying above the sea and below the clouds, I feel immense satisfaction. And on other days when he is inexplicably high or low, I forgive myself and remember that this is the ebb and flow of diabetes -- and just like life, not every day is perfect. You just have to take it as it comes and respond.
The truth is, a response is always required, because being alive literally means to be responsive. Something aways needs your attention, your interest, your actions. Whether its the pot of rice on the stove, the bill to pay, the child with the runny nose, or an unfolding catastrophe. How you choose to respond is how you write the story of your life. Your response to the world is your brushstroke across the stars.
Ride the big waves with grace. Ebb and flow with the tides. You are always at the moment of your arrival. Can you see where you are now?