Bu was two when he had his first migraine; Jane has battled auto-immunity issues much of her life. Many parents feel helpless when they find out their children have chronic illnesses but really, there is no need to panic. If a loving parent is willing to adapt and adjust her/his lifestyle a bit, their kids can thrive. If you're already an attachment/peaceful-parenting, weirdo hippie like me, most of what I'm going to say may seem familiar, even if your kids don't have chronic illness.
I'm not going to share tips on how to help your kid deal with being made fun of, how to be Prom Queen or how to be Just Like The Other Kids because that's just not the world our family chooses to live in. I'm going to talk about how to help your kid thrive and become the best person he can be despite being ill. These are things that have worked for our family. Keep in mind that to the average American we're Crazy Hippie Freaks so these tips may not help you in the slightest.
Because it's heinously awkward to constantly write s/he or his/hers, I've tried to use 'him', 'her' and the like alternately. Hopefully it isn't awkward to read!
First Things First
It's not politically correct or often done these days in the medical field but the first thing both you and your child need to accept is that there are limits to what he can do. More often than not, it will harm him to “just push through it”. In my son's case, it could be life-threatening. Living with limits is generally much more preferable than not living at all.
Hopefully you already have an open and good relationship with your kid, it's imperative that you're open to listen to her when she talks about her health. Even better if he's in touch with his symptoms and pains. If she can tell you when the pain is different or he needs to rest. It's that teamwork that will help you and your child thrive. Help him to develop a good “pain vocabularly” or to express exactly what he feels he can do at the time. You can aid her by showing how to break down big tasks into easily manageable ones on days that the pain or fatigue are overwhelming.
As a parent, there often is a terrible sense of guilt and sometimes feels there's more stress than you can handle. Often that's due to the fact that you're trying to do too much. Change your expectations and be willing to alter your life a bit. Remember, your job as a parent is to show your kid the ropes. She will learn by watching you more than she will ever retain all that you say. So show her how life is done. Most kids are bright enough to figure out that too many adults run themselves ragged simply trying to impress someone else. Lighten up and have fun. Tomorrow isn't guaranteed for anyone. Cherish what you have this minute, this day, particularly if you have ill family!
Eat to Live
Regardless of the condition, make sure you're giving her the healthiest food possible. It can be hard to say no to junk food and non-food, but truly, you're not doing her any favours by giving these foods. When your schedule is hectic it may be tempting to get some fast food, don't give in. If your kid is already on any type of medication, her liver and kidneys are already doing plenty trying to process unnatural ingredients. They don't need to have more to do and since most fast food is made up of things our bodies don't recognise as “food”. They simply have a hard time processing it.
Most chronic conditions can be aided by the regular use of organic, REAL foods. Both our kids (17 ½ and 16 by Western age reckoning) are celiac and Bu experiences migraine flares from additional foods. As much as they might like the taste of something, both know that the pay-off isn't worth it. Since I was already a Real Food junkie and had raised the kids the same as much as it was possible on my end, it wasn't that difficult to convince the kids that there are just as many yummy things they could eat that wouldn't harm them. It took a little longer to convince Meat: Giver of Bad Foods, though!
Definitely though, axe the soda pop, candy, flourescent salty snacks and fast food. Try it for a month and see if you and your kid don't feel better. Have fun browsing the local farmer's markets and growing your own fruits and veggies. Try making different ethnic foods since most other cultures have much healthier meals than what's considered “food” in the States.
Thrive on Real Life
If your child is in public/private school, understand that if he says he doesn't want to go or he feels he can't make it, that is a very real feeling for him. It doesn't necessarily mean he's trying to scam. It's often too much to ask an ill child to take on that environment. If it was simply about learning, that might be one thing, but school entails so much more than that. Don't forget, for thousands of years kids did not go to school and somehow they were able to survive and interact in social settings.
Open your mind to homeschooling/unschooling. It's an outright lie that putting any kid, let alone a chronically ill one, in school will help them feel “normal” and “just like other kids”. School was not created, nor is it designed to be a leveling ground for kids. It exists to get children used to the idea of consuming and following the crowd. It doesn't teach them to think, to get along, to be kind or thoughtful. Meat, who spent his childhood on ritalin and singled out as a hyper-active kid, can attest to exactly how little help a chronically ill child is offered in the school system (really, just ask him). Do NOT trust the teacher or the school administration when they tell you that everything is wonderful and the environment is groovy. These people are paid per child enrolled. Just like anyone working on comission, their job is to bring more heads in so they get more money. They don't want you to teach your child yourself, it's counter-productive to their mission.
Homeschooling or unschooling allows kids – who, by the way are already humans, not miniature people or sub-standard humans – to learn at their own pace and ability. It allows for those days when illness would otherwise prohibit education. Because it IS educational to read a book, watch tv or research things on the computer, even though they seem fun. If you have a Learning Mentality, you will learn from any media – if you're a curious person rather than the type who are happy following the crowd. Bu has repeatedly commented that he loves unschooling because every day he's learning something new, even the days when his migraines are killer. Additionally, he's never had the hurt of being left out of school activities due to illness. He creates his own fun and others join in. He and Jane don't live in a world where their worth is determined by their sporting abilities or social status. They've made friends and talked to people as equals, whether the friends are their age, 40 or 60.
Unschooling/homeschooling the chronically ill child helps him/her to learn limits. This is a vital skill for the future as most chronically ill kids will carry over some of that illness to adult life. Bu is very aware of his limitations and is realistic about what types of jobs he could reasonably take on. He knows that it's not a weakness to let others know about his condition and to be honest about what he can and cannot do.
Some parents have expressed concern that their kids wouldn't have the motivation to learn or take the initiative. I really can't speak for any family other than my own but it's never, EVER been an issue for us. Maybe because life has always been an adventure and a learning experience for me. Perhaps that has bubbled over into my kids' lives. Life is about learning and trying and that was their childhood. If you personally take no delight in learning or think that it is only something that can be doled out by Learned Individuals via Educational Texts between certain hours on certain days of the week during certain calendar months, then you may not be cut out for homeschooling. However, if you're willing to take belly dancing because you think it looks like fun (not to impress your husband/friends), you have your TV or radio tuned to a foreign-language channel and jot down words to look up, enjoy making new recipes or exploring the artsy part of town, then your chronically ill child will likely thrive unschooling or homeschooling.
It Works For Us
While we're still dealing with health issues, life is more bearable for the kids. Not because the kids are sitting on their butts eating candy and playing video games all day. Bu and Jane are fun people to be around - their open minds and insatiable interest in any subject allow them to carry their own in conversations on a variety of topics no matter who they are speaking with. They have abundant self-discipline and wake up early because they're looking forward to what each day offers. They are also aware of how to listen to their Body Signals, when to rest, when to eat, when to get a little extra done. They are well-rounded humans who know their limitations. I look at them every day and see that they are truly thriving. They are happy. They are truly living life. They know what is important and what not to waste their energy on. That's more than enough for me.
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