Monday, January 30, 2012


Even the word transition makes me cringe a little...and I'm not sure why. Maybe because I find change unsettling at times. And when I think about transition, I think it's a little more uncomfortable than just change...I think transition is what happens when change is met with resistance. Your'e not completely on board with what's happening, but you are trying to move into a new direction. You are in transition.

Last Friday we had our first transition meeting with the school system and our Early Steps team. It's something that has been coming for quite awhile, and I have just been in denial about it. Maddie will turn 3 in June, and when that happens she will no longer be in the care of EarlySteps. I guess to understand what that means for us, you have to first understand what Earlysteps is. Every state has their own form of Early Intervention for babies born with special needs, and under these programs, kids are provided free therapies from birth to age three. Maddie's SB qualified her for PT from the beginning, and OT within the last year. So for the last 2 1/2 years these therapists have been a part of our lives, providing amazing one-on-one therapy for Maddie, and support for our family. And anyone who knows us, or follows this blog, knows what a HUGE difference this therapy has made for Maddie. She has done phenomenal, and I don't want it to end. With her third birthday approaching, we are starting the transition process to exit from EarlySteps' care, and enter the public school system. There are so many things that frighten me about this transition.

I guess the biggest concern is the level of therapy that she will receive. Everything I am learning suggests that it will not be one-on-one, it will not challenge her, and it will focus on functioning within the school system...not continuing to progess and gain function. The school people at our meeting made that much abundantly clear. I told them that Maddie is currently "functioning within a school setting", with very little assistance, and I wanted to make sure that the therapy they provide her would conitnue to focus on her thriving and not just "existing". I found their response disheartening, and somewhat condescending. "Lots of parents tend to get confused about the therapy we provide"...she began. "Our responsibiliy is that she"exist" within the school system... Therapy focused on gaining function and challenging her is more the responsibility of a private PT through your insurance." My heart sank.

PT through insurance is not an option for Maddie. I haven't posted about this before, mainly because I haven't been ready to deal with it. I'm still not, but we're on the clock now, so I have to. Unfortunately, our policy states "therapy is to be covered for acute conditions only". Because Spina Bifida cannot be cured or recovered from in a set amount of time, it is clearly a chronic condition. Our insurance company has told us they will not pay for any therapy at all for Maddie because she has a chronic you see why we will dearly miss Earlysteps. It has been a Godsend. While it's true, you can't recover from SB, if they could only see what a huge difference therapy has made, then they would realize it's in everyone's best interest to cover it. She is doing things no one expected her to do, and I want it to keep going. I can't explain how frustrating it is to be in this situation...To see how far she's come with this incredible team, and tell them goodbye...To hear that your child's condition doesn't warrant therapy, because someone thinks it's a wasted effort... To know the amazing potential that is there, and be told "It's not our responsibility" to utilize it. It infuriates me beyond words. I am shaking right now just letting myself go there.

Don't get me wrong...I'm not giving up. I am appealing everything possible. I am learning all I can about any other resources that may be an option for us. And I am praying...and trusting that Maddie's story is not dependant on any one person. I have to believe that with or without therapy, she will continue to thrive...because it's in her. Because it's in me. Because "existing" is not an option.


  1. Oh Selina, I am crying reading this. Transitions are difficult, especially when the transition is unfamiliar. It is awesome that you have had such a great experience with your therapists. Maddie is going to continue to excel. With a mommy like you and with her rockstar personality there is no other option. It makes me so incredibly sad that insurance companies can be allowed to make those statements and those decisions. If they could just meet her for one second, I know in my heart that they would change their minds!

  2. I just know you're going to find a way around this. First of all, she has come so far, and the first 3 years are really the most critical in therapy. Still, school therapy is just not adequate except for teaching them how to navigate at school. I really think your insurance company will "come around" with all the appealing and prodding that I'm sure you're doing. If they can see that major improvements can be made that could save them money in the long run ... Anyway, she's going to be awesome in preschool and you're going to love it.

  3. We are "in transition", as well, and I feel your pain. Is there any way you could get a supplemental insurance? We are incredibly blessed that our HMO covers the boys' private therapy, but if it didn't, I would be as frustrated as you are if they were getting just the school therapy; it is just not as rigorous. You are such a great advocate for Maddie -- keep pushin', girl!

  4. Hey! We’re putting on an online live Q&A with Dr. Levitt from Cincinnati Children’s Hospital about fecal incontinence related to spina bifida, on February 22nd, 2012 at 7:00pm ET. If you’d like to participate in the event, you can RSVP here: If you’re interested in hosting the event on your site or blog and would like some more info, please contact me, John Martin at john (at) Thanks!


Related Posts Plugin for WordPress, Blogger...