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How To Dialogue With Our Children Who Have A Chronic Illness

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Speaking to our kids who have narcolepsy or another life-long condition demands an uncommon vocabulary.  Some parents never have to think about it but those of us who are seeking to raise well adjusted, happy and hopeful children whilst they navigate the lonely corridors of chronic illness, what we say, how we communicate and the messages we send our kids are important.

Really important. 

And as parents we are the ones with the relationship, the experience and the intuition. We are also the ones with the burden, the hope and the vision for their future. That's quite a heavy duty we have. But the good news is that we have the power to influence their hard-wired fears, feelings and frustrations. And we can do this every day in the quiet of our own homes. 

I want to share with you the lessons I have learned (largely through mistakes) because the conversations we have with our kids matter.

You matter and your children matter. What we say and how we communicate matters now and has a significant bearing on their future. 

 "Silence leads to ignorance, fear, and a sense of shame." As Parents of chronically ill children it's our job to open our hearts to hear their questions, speak honestly and gently and provide them with the opportunity to express their concerns. Denying or making light of their concerns is a fast way to limit how they view themselves and the world. 

 "Silence leads to ignorance, fear, and a sense of shame."

As Parents of chronically ill children it's our job to open our hearts to hear their questions, speak honestly and gently and provide them with the opportunity to express their concerns. Denying or making light of their concerns is a fast way to limit how they view themselves and the world. 

Just recently I was asked this question by parents who are walking a similar path to me. "How should we talk to our kids about their condition? What should we say when we don't have the answers?"

I thought it was about time I wrote down what I have learned over the last 7 years in raising a 3, now 10 year-old with narcolepsy.  

On this journey I have found very little by way of decent references that I have been a helpful and constructive road map. And don't they say--"write the book you wish you'd had." 

Well, this isn't a book, but here's my thoughts on being pro-active and not reactive and facilitating our children's understanding of themselves, their condition and their world view. 

1. Intentional Listening

Our children generally have two different sorts of questions. In both cases it is important we allocate time to be intentionally present. This might mean stopping whatever it is you are doing or arranging a time when you can sit down preferably with some privacy and be in a position that ensures eye contact. For the child that likes to be physically comforted this is a good time to share the same couch.

Intentional listening lets the child know that what they are saying is important and that they are in a safe space to talk.

Intentional listening lets the child know that what they are saying is important and that they are in a safe space to talk.

  • The first type of complaints are the immediate, in the moment every day struggles.

Commonly these manifest themselves as social issues with peers, feelings of isolation and feeling "different. It's the falling apart after a bad day at school questions which come thick and fast in the moment.

As parents it is tempting to jump in and "fix" things. This is definitely my immediate reaction when Mathilda tells me about friendship struggles. I want to call the school, organize play dates and speak to the parents concerned. 

But perhaps a better line of conversation that would give the child permission to be angry, upset and afraid might be better addressed with open-ended questions: 

      "How did that make you feel?"

"Why do you think that happened?"
"What do you think needs to happen to change the situation?"
"Can you handle that alone or do you need help?"

By asking open-ended questions we are handing over responsibility to the child which can be empowering. Some issues need our direct involvement but for the most part our children are stronger than we think and it's our job to encourage their sense of independence. Rarely do we need to jump in and sort out the mess. With intentional listening we validate their experiences by acknowledging their concerns. Our responses reflect that and lead to further opportunities for communication. 

Couch time might not be every day, or every week, but when it happens it's important to let go of other distractions and invest in the opportunity for connectedness.

  • The second type of question our children may ask is bigger and more difficult to navigate: It's the "Why Me?"  

Wherever we are at in our own personal reasoning and acceptance of the bigger philosophical question of suffering, it's important to tell our children that their condition is no fault of their own. We know that of course, but how many times have we verbalized it?

Wherever we are on our personal personal journey of acceptance our children need to be very clear in their own minds that they are in no way to be blamed for their condition. 

Whether you do have the answers to these thorny questions or whether like me you struggle to say something constructive without crying, it's crucial to be honest. Here's where I say "I don't know why you have narcolepsy. But I do know that your are brave and beautiful and have everything to live for." 

Communicating a vision of purpose and hope is a good place to start when trying to address our children's bigger questions.

Communicating a vision of purpose and hope is a good place to start when trying to address our children's bigger questions.

Strangely enough children don't need all the answers of the time. What they need is our trusted ear. 

In the same conversation I offer positive anecdotes. Essentially, what Mathilda needs to hear is that despite narcolepsy, she has purpose, a contribution to make and everything to hope for.  

Positive role models can be useful tool--PWN who in times past have led incredibly meaningful lives because of their narcolepsy. People like Harriet Tubman and Winston Churchill are good reference points for our kids. Believe it or not there are websites dedicated to notable PWN. This exposere to positive role models also provides perspective and gives context to their own struggles. It also makes for fun reading!

I generally avoid exposure to negative situations by not allowing Mathilda to track with my social media feeds. That's for us parents and I will stave off the demnads for her own iPhone for as long a possible.

2. Honesty Is Everything

Have you ever overheard a parent (or doctor) say to a child who is about to have an injection, "this won't hurt?"

And have you sat there fighting the urge to correct them? It does hurt, if only for a few minutes. 

Kids aren't stupid. When an illness befalls them it is imperative (if we want their trust on every other level) to be honest. So keep it real. Let's say "it does hurt but only for a moment."  Then let's tell them thy might have fever later but it should be gone within day or so. Then let's tell them that if they do continue to feel ill, they need to tell us so that we can keep an eye on them. In other words let's be honest all of the time. 

And if they have they have an incurable condition that will profoundly effect every area of their lives, let's name it. We might find this hard as parents because we are on our own journey of denial, grief and exhaustion. In our house we don't mention narcolepsy every day, but we do name it when it needs to be mentioned. Being honest about what she has even though we don't understand why she has it eliminates shame, fear and guilt.  

I try and do this by acknowledging that she takes her cue from us and drip feed information depending on her desire to know in the moment. I try and give her enough information but not too much that she's overwhelmed.  

Ask yourself "what are they asking, what can they deal with right now and what do I need to save for another time?"

By being open and honest you will have a relationship built on trust. This is an incredible gift because everything else you say at a later date will be heard, acknowledged and respected. 

3. The Dangers Of Labelling

In my FB live video (home page) you will hear me talk about the potential pitfalls of labelling. On one hand, our children need to be able to speak freely and name their condition. On the other a fixed label can be something to hide behind, something that excuses them from run of the mill responsibilities. What to bear in mind with our CWN is that narcolepsy is part of them but not all of them. 

  • A diagnosis is different fom a label. We need a diagnosis but our kids don't need a label. 
  • A diagnosis is essential in understanding the condition, getting appropriate treatment and helping others understand. 
  • A label can be life-defining and self-limiting. 
  • A label can be an excuse for poor behavior, something our children might be tempted to hide behind.

One of the ways I think we can distinguish between the two is how we phrase narcolepsy. So for instance, "my daughter is a narcoleptic" is different from saying "my child is a person with narcolepsy." 

The first is a defining label what suggests Mathilda is entirely governed by narcolepsy. I would even go as far as saying that being "narcoleptic" suggests she's not much else. 

On the other hand by changing our language to "I am a child or person with narcolepsy" we are staying that the condition is part of them, not all of them. It validates their uniqueness without down-playing their struggles. 

And we can apply this to all conditions. I'm thinking of children with epilepsy, diabetes and the like. Same principle applies. 

4. Let's Talk About Spoons

Have you ever heard of the Spoon Theory? It's a great tool for communicating with your child about their energy levels and ability to cope in the moment. Designed by a woman with Lupus called Christine Miserandino, the spoon theory is sort of code that is easily understood and particularly useful when in company. I could write a whole post on this but it's already been said so I will put the link up below for those of are unfamiliar with it.

Instead of telling Mathilda she needs a nap, I will ask her if she has enough "spoons" to last for the next activity. It sounds weird but this code gives her control to make a decision about her health in such a way that frees her up from using words like nap, sleep, and tired. She is pretty sensitive to these words and they can trigger frustration/outbursts so using "spoons" has been a better way to talk about her condition. 

 

These are some of the ways we have tried talking to Mathilda but I'd love to hear what you have found works with your child. So drop me a line or post a comment and please share with the adults in your children life if you think this is helpful.

It's hard being a parent of a CWN, but we don't have to do it alone. 

 

Thanks for reading! 

 

For the Spoon theory check out :

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

For The full story of our journey through narcolepsy check out: 

https://www.amazon.com/Waking-Mathilda-Memoir-Childhood-Narcolepsy/dp/0998694029/ref=pd_rhf_gw_p_img_1?_encoding=UTF8&psc=1&refRID=64G94FNWC310J9YMRH53

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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