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…
I love Katy and how she handles everything on her plate without complaint.ReplyDelete
Totally agree that it's a marathon not a sprint, I think we all attempt to sprint when they are young and first get diagnosed and then have to recover from burnout for a while.
Yeah I'm a slow and steady person while my husband is the opposite fast and eager. I reminded him to slow down- its not a race.Delete
Katy-you definitely rock.ReplyDelete
I really needed to read this, especially the part about just being with your child and enjoying them for who they are. I get so caught up in their therapy, appointments, etc. The rush of the routine happens and I forget to slow down and just enjoy them. Thanks for reminding me.ReplyDelete
Sounds like we're more alike than I thought. Except it's Dr Pepper for me.ReplyDelete
I requested a new EEG after Jailen completed 80 HBOT treatments thinking that just maybe we could ween him off his medication since he had drastically improved in many areas. They did it, & the results showed the worst ever. His seizure activity used to be confined to 1 small part of his brain. After that, it showed his entire brain with seizure activity. I cried the entire drive home from Children's, which is about an hour. When we got home, all I could do was hold him & love him. I needed that to remind me of all his improvements. That's when I realized that on paper, he's scary as hell, but that didn't change the beautiful, happy, funloving boy I see smiling all day, everyday that I love so dearly.
Oh & "rock seems too cool"...WHAT? Are you kidding me?!? You are maintaining Charlie, twins, & another pregnancy!! That, my friend, is the absolute ULTIMATE definition of one who ROCKS!!!!!!Delete
Katy I love that you don't think you rock, but you do. Since I've read your blog since before Charlie was born, I recall your determination, dedication and plain persaverance as his mom. I know you have inspired me in how I seek help for my boys. I also especially liked your advice of just being with them.ReplyDelete
You ROCK!!! Even if you balk at we believe it!ReplyDelete
Always an inspiration Katy!
That last photo is so cute and gets me! Just like little kid cheeks and hands and feet are so cute, and little kid shirts and shoes are so cute, little kid wheelchairs are so darn cute! I wish I had a few little shirts in my laundry, but alas, it is not to be.ReplyDelete
Great post! You have a beautiful family.ReplyDelete
I used to read Bird on the Street ALL the time and loved it! I am working a LOT and havent checked it in eons but I will again. I can't believe Katy is having another bebe!!! Congratulations! Your family is so gorgeous--they are all too cute for words!ReplyDelete
I love you, Katy, and I can't believe you don't think you rock. In fact, this is one of my favorite posts---and two of my favorite women/bloggers in one place. You're both inspiring and so much stronger than you know!ReplyDelete
Can I also suggest Joni and Friends? I don't know if you've ever come across them but I know they have awesome resources for families like yours.ReplyDelete
May God bless you and your family!
I love Bird on the Street especially the thematic units part which i modify for my 5 and a half year old daughter Abbey who is blind as a result of Repnopity of Prematurity9she was born 6 weeks early)and has Down Syndrome.In addtion to Abbey I have 2 year old twin boy Brandon and Bryan who are "typical" and 2 week old Carly.ReplyDelete
I am happy right now thanks to the Summer Reading at New York Libraries program.On the poster/flyer thingy for the teen summer reading and event program OWN the Night there are sillioutes of many teens in different shades of gray reading and listening to music stareing at the sky including 1 in a wheelchair.This is a small sutble hint of inclusion that makes me happy especially that it is portrayed in one of the less accepting age groups.Bravo to the people at the New York Libraries Summer Reading program.ReplyDelete
love your words my friend I hear you loud a clear from one sleep deprived momma to anotherReplyDelete