This is another guest post in the This Is How I Do It series, which features awesome bloggers who have kids with special needs and their survival/sanity secrets.
Blogger: Kate Leong of Chasing Rainbows
Her kids: Brian, 3, and Gavin, 4, who has cerebral palsy, developmental delays and yet to be diagnosed genetic syndrome
My three biggest secrets to sanity are…
My biggest secret to sanity is writing. My blog chronicles the daily life of my children - like an oversized baby book. But it’s also a big therapy session where I dump everything into my keyboard. I tend to put it all out there on my blog—I am brutally honest. My hope is always that someone who’s reading can relate to my ugliest moments and feel less alone. Since Gavin was an infant, writing has kept me sane and helped me make sense of things. Besides dealing with Gavin’s physical and developmental issues, we’ve also had a long bout with infertility including in-vitro fertilization, way too many miscarriages and the tragic stillbirth of our daughter. And now we’re about to try to conceive one last time using an egg donor! Writing through all of this has helped me immensely. (If only I had known this earlier in life, I could have saved so much money on therapy!!)
My other sanity saver is a strict 7 pm bedtime for our boys. This allows my husband and I to sit on the couch like zombies and watch brilliant and thought provoking shows like Dancing With The Stars, Real Housewives (of anywhere) and American Idol. My name is Kate and I am not ashamed to be addicted to Reality TV.
I keep track of my child’s therapy and medical appointments by…
An old-fashioned calendar! I chose to keep Gavin home for pre-school and I feel lucky that all of his therapists and his teacher come to the house to see him. They come every week on the same day at the same time which makes it so easy. The only tricky thing is scheduling OTHER appointments for Gavin or his brother—or me—around Gavin’s therapy. I am super-fortunate to have someone at the house helping me every weekday with the boys. Each afternoon we go over the next day’s game plan. Having someone at the house enables me to drive Gavin’s younger brother, Brian, to pre-school. Sure, he could take the bus, but it’s become such a special time between the two of us! Having help also ensures that Brian doesn’t feel left out when a therapist shows up with exciting and fun-looking “toys” for his big brother. Everyone gets their needs met which makes this Mommy very happy!
One way I relax (actually really, really relax) is…
Fairly frequent overnights or weekends away with my husband. Ed and I take this very seriously. It’s so easy to neglect each other—or ourselves—when the days revolve around our children. We make sure we get away to a hotel every so often so we can recharge. It’s remarkable what a night or two of adult conversation, a fancy meal, a spa treatment (or two) and maid service will do for a marriage. We feel lucky that we have at least three incredible women (sometimes more!) that we can count on to stay with our children. All were former aides or helpers that know Gavin very well. We know that hiring a random babysitter for a night out is not an option for us. Having an arsenal of reliable and trustworthy women that have become part of our family is crucial.
When I get bummed out about something related to my child, one thing that gives me a lift is…
Remembering the past.
Remembering the predictions.
Focusing on the future.
I can still hear the voices of those who had such little hope for Gavin’s future. This child with extremely low tone was probably never going to sit up. This child who was born with permanent hearing loss would need hearing aids for the rest of his life. This child who was fed from a tube for months would surely need a permanent tube inserted in his belly.
I can still hear our voices as we said no... we don’t think so. We had bigger dreams for our son. We’d find the right therapies... we boldly asked for miracles... we refused to accept. Gavin is now walking up the stairs. His hearing was miraculously restored. (Really!) He eats real food that I puree for him and is working on eating solids. And he’s starting to use an iPad to communicate with us.
When I get bummed out it never lasts for long. I have my moment and let myself rant and then it’s done. I feel if I linger too long in misery it’s almost disrespectful to Gavin. He amazes me every single day with his sweet smile, an easygoing personality and an intense determination. We may provide the resources, the opportunities, the ‘things’... but he’s the one that does all the hard work. Who am I to complain?
If it weren’t for [fill in the blank], I am not sure I would be able to get through the day.
My parents. Actually, if I could re-write that it would say this: Because of my parents... and all that they’ve taught me... I am able to get through every day with a positive attitude. My dad always taught us that attitude is everything. That adversity can make you bitter—or better —and it's your choice. I know that my positivity comes from him. And my mother is such a fantastic mom. My greatest aspiration in life was to be a mom because of her. Every time I make a memory with Gavin or Brian, I think of her. The thought that one day my boys might feel as close to me as I have remained close to my parents? That’s probably what gets me through each day. I really don’t see this “special needs” world as my “cross to bear.” It’s quite the opposite, actually! Before Gavin, I’m sure I was rather self- centered. Gavin, and his intense needs, feels almost like a life preserver to me. He has changed me in a way I can’t explain... from his calming personality to his quiet demeanor. We call him our “Little Buddha.” He has given my life a purpose and a plan and an intense joy that I could have never dreamed of. Clearly I needed him more than he will ever need me.
The way my husband and I split up responsibilities for caring for our child is…
That was never really communicated—it just happened. Ed has been a hands on Dad from the start. He changed the first diapers in the hospital. He helped make the boys baby food. Although I rarely take him up on this, he encourages me to go out and do things for myself. He recently took a new job because it promised less hours, less travel and a shorter commute—all so he could spend more time with his family. I am the one that handles the majority of child care, therapy and insurance woes. But having a partner that is there and ready to help with anything? I’m a lucky woman. Oh, and he’s a fabulous cook. Back off, ladies—he’s taken!
The way I deal if strangers stare at my kid or say things is…
My honest and true first instinct when I see an adult staring at Gavin is to stand taller—I always assume they are admiring his extreme cuteness. I mean, come on! Look at this face!!
Gavin is still young so I haven’t had a whole lot of negative experiences—either that or I’ve assumed their stares were complimentary! I do remember an older woman admonishing me for pushing an obviously older child in a stroller, telling me that I was going to teach him to be lazy. I sweetly told her that my child was, in fact, unable to walk. That I chose to use our stroller so I could keep him out of a wheelchair longer because it made ME feel better. I felt bad as I knew it made her feel uncomfortable to hear the truth. It just goes to show you—the cover of the book is the smallest part of the story.
One great therapy technique I recently learned for my child from his/her therapist that I like doing with him/her is…
Alternative therapy. When Gavin was in Early Intervention, he had a nurse assigned to his case. She was the person who turned me on to thinking outside the "traditional" special needs box. Her son, who was similar to Gavin, was getting craniosacral therapy with great results. We jumped on board. Since then, Gavin has had equestrian therapy... we bought a hyperbaric oxygen chamber which we have in our living room... he regularly sees an energy healer... and he sees an acupuncturist. I have noticed the greatest gains in therapy after seeing his energy healer each week. His low tone improved tremendously after horseback riding therapy. We noticed cognitive improvements while doing hyperbaric oxygen every day for an hour. And now we’re working on eliminating his food allergies through acupuncture. If we are shown a way to help Gavin that is non-invasive and without the use of drugs... we’ll do it.
One great site I’ve found lots of good ideas on is...
Facebook! When I think of my Mom who had five children close in age—with no computers and no cell phones and a very busy life—I feel grateful for technology. I rarely get out of the house. When I do, it’s to head to a medical appointment or some type of therapy. If it weren’t for Facebook I think I’d feel pretty isolated—which I imagine is how my Mother must have felt in the house all day with us! Facebook gives me a pseudo-social life! It allows me to share fears and get encouraged instantly. I can share a photo of my children and get virtual smiles. Sharing parenting dilemmas gets me almost instant feedback from other, more experienced Moms. I keep Facebook up all day on my computer and even if I only get to glance at it a few times it makes me feel connected to people other than therapists and doctors. I love that.
I rock because…
I stand on the shoulders of rock star women and men that raised me. My Dad, Mom, sisters and brothers—each of them are parents I admire. And each of them are positive and inspiring. I rock because they do. They taught me how to do it, this parenting thing. I’m still a work in progress, but feel lucky that I was handed impeccable blueprints.