Rambling

Jennie over at She Like Purple has a little soapbox that she pulls out from time to time and it’s one that I’m especially fond of. Paraphrasing poorly, she says that everybody parents differently. She goes on to say that you can’t let yourself get distracted by other people’s opinions or methods, but rather you just need to focus on your child and what works for you.

Jennie’s child is typical and she’s mostly focused on issues like breast-feeding and daycare, but I think the same is true in Special Needs Land (like Candy Land! With fancier equipment!)

In my, still-figuring-this-thing-out opinion, the only thing you can do is follow your gut. Read, learn, study, ask lots of questions, and then see where it takes you. It might be stem cells in China, nutritional formulas from India, or manual compression in Canada. It might traditional therapy. Some parents take the money that other parents spend on therapy and they take their kids on vacation. Some parents thank the Lord when they finally consent to a G-tube. Ours was a complete nightmare and I don’t miss it one bit.
Truthfully, I don’t think WHAT you do matters as much as HOW you feel about it. Make no apologies.
Do I think I’m doing the right things with Charlie? Hell yeah, but that’s the only way I’m gonna sleep at night. Everybody has to find their Ambien.
There are plenty of parents who started ABR with us in October of 2008, but who decided it wasn’t a good fit for them. There are parents who pursue therapies that I have dismissed as not for us. Do I questions myself? Yes, but I always come to the same conclusion–this is the therapy for us. This feels right.
I strenuously question the motives of anyone who tries to bully or coerce you into thinking one way or another. If you e-mail me about ABR, then be prepared to get an earful. I LOVE this therapy. It’s gentle, it’s easy, I do it in my own home with my child in my lap. It’s the thing that makes sense to me, for our family. I hate that more families don’t have access to it.

I would never push it on anyone, though. I know full-well the path of doubt and confusion that a parent faces when their child is given a life-altering diagnosis. It’s a hard. Really hard. It hurts you places you didn’t know existed. And that, I feel, is enough pain for one person. Parents shouldn’t have to feel even worse for making an informed, loving decision–whatever that decision may be.
I realize this is a bit of a ramble, but it’s on my mind. We can only do what feels best. Really. And the rest. . . is for everyone else to sort out.
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Comments

  1. Great post Katie. I agree that everyone has to find their mojo when it comes to their own child. We've stopped ABR (though I have been thinking about rolling a ball on Moo's back lately) and have gone back to traditional PT. I'm actually quite liking it. A male therapist that treats Moo very respectfully and Moo is trying so hard. Something he never used to do (would spend so much time crying it would almost be a waste). It's the right thing for us at this point in time but I would never say never to other therapies.

  2. What you said is so true, Katy! You always are so pragmatic! :) I think it can be hard for all parents with special children to find their way…it is such a bumpy road with all kinds of potholes and ditches. I think it takes some longer than others to work those things out in their lives and minds. It sure took me a while!

  3. Noah's Mom says:

    Beautifully put Katy.

  4. Absolutely. Every Mommy is right.

  5. Amen.

    Go with your gut. You have to.

    I am still judged for the choice I made for Alan, but at the end of the day, it really is no one's business, but mine.

    I would love for him to live with us, but we are not independently wealthy enough to have all the care he would need 24/7, so that his quality of life would be what he deserves.

    Hang tough. We are all together on this crazy ride called life.

  6. Did you not like the medicine I recommended for you a while back?

  7. You ramble well :)

    I think the only thing that really matters when raising a child, whether they are developming normal or not, is to treat them with love. once there is love, everything else just falls into place.

    Great post!

  8. I think the absolute world of you, you should know.

  9. Wherever HE Leads We'll Go says:

    Very well said! I never do understand those parents who feel that they know it all and everyone should do what they say, whether they have been asked to give their opinion or not. I want to say "at what point did you decide that you knew it all and the world should revolve around you?". We each have been given our children for a reason. We have to do what is right for them and for us. End of story!

  10. So true…sometimes it's more difficult to remember this attitude and put it into effect. and not that it matters what i think of your parenting :)–but you're doing a fantastic job.