This is another guest post in the This Is How I Do It series, which celebrates bloggers who have kids with special needs—and their smart strategies for holding it all together.
Blogger: Katy of Bird On The Street
Her kids: Charlie, 4, who has cerebral palsy, epilepsy and hydrocephalus and twins Louie and August, who turn one next week—the day after Katy's scheduled c-section with baby no. 4!
My three biggest secrets to sanity are…
Get plenty of rest. It's tempting to go, go, go, but everyone will feel better if mom is well-rested.
It's a marathon, not a sprint. When your child has a life-altering diagnosis, I feel like there's this rush to do so much—especially in the first three years. It's OK to take it slow. Your children will continue to grow and improve for years and you need to be ready for that.
Try to keep a sense of humor. When people spend time with us and our family, they inevitably notice that we joke around about everything—nothing is out of bounds. I think that gives us the chance release some of the stress that can come with raising a special needs child.
I keep track of my child’s therapy and medical appointments by…
I'm hopelessly old-school—I write them down in a notebook.
One way I relax (actually really, really relax) is…
A nice warm bath—with no interruptions! I take a ton of baths; they relax your muscles and your mind.
When I get bummed out about something related to my child, one thing that gives me a lift is…
Taking some time to actually BE with my child. I find that when I'm bummed out, it's usually something that a professional did/said/predicted. They don't mean to get me down, but they have a job to do and sometimes it's just hard to hear their evaluation of my child—especially when I think he's so fantastic. Taking the time to hang out with Charlie reminds me that he is, in fact, fantastic, even if the rest of the world can't always see it.
If it weren’t for [fill in the blank], I am not sure I would be able to get through the day.
Diet Coke. Or my iPhone—I actually text back and forth with Charlie's teachers about his day, which is great since he can't speak.
The way my husband and I split up responsibilities for caring for our child is…
I am a full-time mom, so most Charlie duties are my responsibility: doctor's appointments, therapy appointments and decision, research, etc. My husband is the medicine guy, though. I'm VERY forgetful about medicine—even my own—so early on he took up the responsibility of making sure Charlie is medicated properly and that prescriptions don't run out. He also handles breakfast every single morning because my idea of breakfast is sipping and Diet Coke and wishing I was unconscious.
The way I deal if strangers stare at my kid or say things is…
I try to take friendly and approachable as far as it can possibly go. If people look at us, or him, I give them the biggest, toothiest grin on the planet. I'm almost always rewarded with a smile in return. People are curious. I could spend a lot of time worrying about it, or just accept it. As for things people say: I was a teacher in a former life, so I tend to try to teach people about Charlie. If they ask, I try to describe him briefly, "He had a stroke shortly after birth" and most people can take that and deal with it. If they stay and spend some time talking to him, then I'll explain further than he can't speak, but does understand.
One great therapy technique I recently learned for my child from his/her therapist that I like doing with him/her is…
Truthfully, I don't have much on this front. I'm more of a slow and steady person than one who is always trying something new. I will say that we bought an iPad and had Proloquo to Go installed, which has allowed him to communicate with us some. That's pretty cool.
One great site I’ve found lots of good ideas on is...
My favorite website is called Disabled Village Children. I have no idea who created the document, but it seems to be directed at people working in small villages with few resources. Some of the language is really out-dated, but there's a can-do attitude about it that I just love. Need a stander? They show you how you can make one. It's got lots of every day tips for fighting tone, and helping a child become more independent. Like I said, it soooo not PC, and some of the language will make you cringe, but if you can get past that, you'll find lots of practical tips for working with your disabled child—many of which are inexpensive to implement.
I rock because…
