In fact, the first time many caretakers are introduced to certain conditions or disorders may be at their child's diagnosis. There may be shock following the diagnosis for the entire family. At this time it may sink in that the normal timetables of development and independence may be permanently skewed. Few parents and family members feel ready at the get-go for the level of lifetime commitment it sometimes requires to care for a child with a disability. It takes much time to reach a point of acceptance, sometimes years or even decades.
The point I am making is that having a condition such as autism, ADHD, epilepsy, bipolar disorder and so forth, is not only difficult for the person who has it but for the entire family. Coping with special needs is a family affair.
Caretaking can take a toll on family members in many ways. Caretakers may be especially vulnerable to mental health issues such as stress, burn-out, anxiety, and depression. People who care for others may also neglect their physical health leading to greater susceptibility to illness and especially auto-immune diseases. Caretaking also takes considerable time. In the state of California, for example, almost 1 in 10 families having a child with special needs spends 11 hours or more per week providing or coordinating care for their child. Many parents have to quit their jobs in order to take care of their loved one at home. The loss of income can create a considerable financial burden upon the entire family. Divorce may be another casualty in raising a child with special needs (some statistics show the rate as higher than 75% for parents of children having an autism spectrum disorder) but recent research (2010) attempts to debunk this correlation.
I realize that I have painted a rather dire portrait of caretaking much like the Ghost of Christmas Future in the Charles Dicken's tale, A Christmas Carol. Much like Ebenezer Scrooge we cry:
“Answer me one question. Are these the shadows of the things that will be, or are they shadows of things that may be, only?”
While nobody has a crystal ball to predict the future, I dare say that it is possible, much like Scrooge, to up the ante for good things to happen in your life regardless of circumstance. Yes there is hardship on this particular journey of raising a child with special needs. But it is not the end of your world or your child's world. I won't burden anyone with cliches but there is joy here too. Whereas other parents may take for granted all the seemingly small accomplishments of their children (calling for you by name, sharing a hug, catching a ball, making a friend, or writing their name) you will rejoice as though the heaven's have parted just for you and your child. There is a depth to this experience that cannot be measured in words. Sometimes in order to feel those lofty highs of gratitude, you must also feel the sinking depths of uncertainty. But I can tell you (in my humble opinion) that this journey is worth it.
Yet in order to survive the ride you must take care of yourself.
The reason for this page on caregivers is to remind you that your job is not just to take care of your child and/or family. Your primary job (even if it feels selfish) is to take care of you first.
You know that sign on airplanes about the oxygen masks? If you don't know...it is written directions for parents traveling with children that if there be a need to use the oxygen masks, parents need to use them first. This seems to go against our primal instinct as a parent. We think to save and protect our kids first. But who will help them if we are unconscious? It is a wonderful metaphor for our lifelong journey with our kids. We are of no use to our children if we end up broken.
If there is one Ghost of the Future message I would like to give to parents just starting out after the diagnosis and even to some parents well into this journey it is this:
You are a parent for a lifetime.
Do you get that? I mean...really get it? This isn't just about early intervention. This isn't just about short term goals of getting your child into mainstream first grade (if that is your goal). This isn't about getting your child to go to camp for the first time or make that first friend. This isn't about finishing the third grade project that is bringing you and your child to tears. This isn't about your child being invited to a birthday party. It isn't about graduation or your child getting their first job. It is about coping when some of these things don't happen on your time table or don't happen at all. It is about a lifetime of commitment no matter what does or does not happen.
We focus so much on the little kids with special needs. I have another message from the Ghost of the Future:
Your child will grow to be an adult someday.
The reason for my words is that so many parents put all their time and energy into those first years after the diagnosis. I am all for early intervention BUT at the same time you need to conserve your energy and stamina for the years ahead. You think toilet training is hard. Wait. Wait until puberty when all hormonal hell breaks loose. You don't want to be burned out by that time. This is not a sprint, it is a marathon. You must fuel up for the long haul. You must pace yourself so that you don't collapse in the middle of the race.
The Ghost of the Future also says....
You need to be selfish to survive this.
I am defining "selfish" here as the parent who grabs the oxygen mask first. You need breaks. You need respite. You need time with your partner, family, your other children, and friends. You need time to go to the doctor for your medical needs. You need support and a listening ear. You need time to take a bath and relax. You need time to think of other things than your child. You need time for fun and hobbies. You need time to be more than a caretaker. You need time to explore your own happiness without guilt or remorse. Your life does not begin and end with your child no matter how severe their need. As much as you love your child and always will, you cannot live their life for them.
These are not just words for me. I have lived this. I did the whole martyr thing (not caring for myself) for years in the attempt to "save" my son Max. I found out the hard way that Max doesn't need saving but I did. I was drowning and didn't even know it. In future posts I will provide the gory details of those years leading to my eventual transformation. Max and I are much happier and healthier as a result.
In the meantime we are here to lend support to all of you wonderful moms, dads, grandparents, siblings, and friends who give of yourself everyday.
Don't worry, we aren't going to put you on a pedestal. None of us are perfect. And our kids give back to us just as much as we give to them, sometimes more. But just wanted to tell you, in case you have not heard it today, or ever, that YOU are so important. You matter to your daughter, son, brother, sister, grandchild, or friend. Our kids don't need perfect....they need you.
Here are some resources to keep you going. Your mental and physical health are precious commodities. Protect your overall health so that you can keep caring for others who need you.
- AbilityPath.org
- Parents Helping Parents
- Federation for Children with Special Needs
- Family Caregiver Alliance
- Pacer Center: Grandparent to Grandparent Program
- Sibling Support Project
- Our-Kids
I love this page! There's a lot I haven't seen yet, so I'd better get busy.
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