Not only is it hard just being a parent, but some of us get the added complication of having a child with special needs. These needs can be anything from medical to behavioral and all that is in between. While I can only speak for the medical needs category, I think that getting support or advice is critically important to raising our special children... and if you're anything like me- you don't want help from others.
But not all assistance comes in the form of a nanny or a granny. I've discovered a couple sources that have been invaluable to me while struggling through this whole mommy-hood thing. I haven't figured this out completely yet... I mean, obviously, my daughter is only a toddler. But I know an essential 'tool' when I see it.
The first source, and my most favorite, is Janet Lansbury. However you want to take her. She has a website, books, podcasts..... angels. Okay, not angels, but she WILL help you realize that your child is one for sure. She is all about helping parents parent. How to talk to your child, how to deal with outbursts, struggles and all the day to day that is a growing, learning, boundary-pushing kiddo.
Why is this helpful for parents with special needs babies?? Well, again, I can only speak to the medical needs category (and not even ALL of the special medical needs situations either). But I know that I need to build a special, trusting and respectful relationship with Avie. She needs to know that she is safe with me and that I can take all her "bad stuff" with all her "good stuff". I'm her nurse, her mommy, her pharmacist, her chef, her boo-boo kisser and the hand she holds when the news gets scary or the doctors start poking.**
So one day, she will be old enough to fight against my instructions to take her medicine, she will rebel and say no and cry. In that moment, she needs to know that I'm not backing down and I'm not scared of her, but that I get it. And I'm going to let her show me how hard this all is for her. Then in the end, she will take her medicine. Hopefully, those moments will be few and fleeting because I will have spent the formative, baby years of her life making her a secure, confident human being.
**Ever have a contrast study done on your infant? Huge x-ray machine clicking overhead while your baby lies on a cold table by herself- only allowed to grasp your little hand? Guess what got her through that super scary, uncomfortable moment -- the sound of your voice, momma. Just your voice.
My next source is a book that I honestly haven't read all the way through. The reason being that my little Avie is a little too young to really implement these critical tools. The book is called, Parenting Children with Health Issues- Love and Logic. It gives advice surrounding conflict resolution and teaching your medical needs children about consequences... which is scary, as the consequence for not taking medicine or doing a treatment can be life-threatening. I don't know if these practices align exactly with Janet's "RIE" parenting approach, but take from it what you need and decide what works for you and your family. The biggest thing I have learned from this book so far, is that my little Avalyn Rose will carry a big burden around with her every day in the sense of responsibility and necessity.
And she will have to learn this responsibility at a much younger age than her peers. I've seen the glimpses of situations that will be difficult for her as she gets older. It's going to suck for her. I want her to know that I'm there for her- and even more than that, I want her to know that she's got this. It would be nice if she can realize what I've come to understand: she is blessed to have Cystic Fibrosis. She will know restraint, trust, capability, wisdom, responsibility and maturity. She will be aware of what is important in life and she will wake up each morning feeling blessed and breathing.