SDR: taking the plunge!

 Well, we are taking the plunge: On June 13, Hannah will undergo a selective dorsal rhizotomy in NYC.  She will be there for about 3 days and then transfer to an inpatient rehab facility for about 4-6 weeks of intensive therapy so that she can rebuild strength in a body without so much tightness, as the surgery will be cutting many of the nerve rootlets which cause the spasticity in her lower body.

We have spent a LONG time thinking about this procedure (at least two years).  We've talked to parents, doctors, therapists.  We've looked at various studies showing the results of this procedure on kids with the kind of cerebral palsy Hannah has (spastic diplegia).  We've researched where we should have it done, whether or not we should look at a place that offered inpatient rehab, whether or not we should do it locally, etc etc etc.  I don't think I've ever thought this long and hard about anything before.  Then again, the stakes have never been so high.

It's not like this surgery is necessary or required for Hannah to lead a full life.  No one will tell us it is 100% the right thing for us to do for her.  And it will be hard work for all of us to undertake this.  We will be away from home for at least a month, we'll be separating the family unit during this time, and require an inordinate amount of motivation and energy and patience on all of our parts to ensure she gets the maximum potential from this procedure, which is pretty useless unless you put in the recommended intensive therapy after, for upwards of one year.  It's a long surgery, it will cause her some pain, and then she will be kind of like a wet noodle for awhile after, not able to do many of the things she can do now.  No one can tell us how long her recovery will take, and how soon before she is back to her pre-surgery functioning.  We also can't anticipate how she'll react emotionally, or how Isabelle (and even Sam) will fare during this time.

But after all of this thinking, researching, and questioning, we have decided that it is worth it to do this for Hannah, because the benefits, we believe, will outweigh the costs (I'll have to keep reminding myself of this when the going gets tough!) In terms of an ideal candidate for SDR, Hannah is a textbook case on all measures and therefore is likely to have a very positive outcome.  What this means is that while it won't cure her CP, it will help her to move her body in a way that is more efficient and fluid; it will reduce the chance that she'll develop bony deformities and need multiple orthopedic surgeries in the future.  It will lessen the likelihood that Hannah will develop pain from having such spastic muscles.  In a nutshell, it will increase the quality of her life and maybe even increase her functional independence.

So we are going to go for it, and we think it will be well worth it.  It might be really hard and take awhile to see the benefits of this hard work, but we feel very lucky that this option exists for Hannah.

I plan to use this blog to keep people posted on Hannah's progress after surgery, so stay tuned!

Ch-ch-ch-changes

OK, I am a lame blogger.  Well, no.  I'm a busy mama! I do often think about posts I'd like to share-they pop into my head when I'm in the shower or doing the dishes or nursing Sam.  But then my few minutes of quiet time are gone and it's on to the next thing and I never get to write.  That's okay, I'm busy living life.  But I like how this blog has charted our course through this maze of raising a child with a disability, and I like to be able to go back and reflect on previous posts.  I also appreciate that every once in awhile, a small useful nugget of info that I share might be passed on to another family in a similar situation.  So I'm not quite ready to close up shop yet, but acknowledge the frequency of my posts might be less than it was in the past.

That said, I do have a lot to share.

We have had a very busy winter, making more adaptations to our home, with the help of a good friend who is a carpenter/woodworker extraordinaire and the generous support of family.  The biggest change has been the addition of another railing on our stairs, at Hannah-height and width, so that she can walk up and down the stairs by herself (with a spotter).

We also had a special dressing station built, where Hannah can both sit as well as stand with some support at her back so she can, with minimal assistance, get dressed on her own.

In our bathrooms upstairs and downstairs, we have some platforms around the toilets and grab bars, as well as step stools to the sink so she can go in and out independently. 

With all of these adaptations, Hannah can do many things in our house on our own.  If only the rest of the world were so accessible to her! There are still a few small things we need to do (put coat hooks lower down in our mudroom area) but overall, these changes have been so positive for Hannah and all of us.

The other thing that has been consuming a huge amount of my time this winter has been dealing with the current situation at her preschool and preparing for kindergarten next Fall.  Both Hannah and Isabelle are in an early intervention preschool (Isabelle qualifies because she is considered "at risk" due to her prematurity, even though she does not have any developmental delays).  This preschool is supposed to have an equal mix of "typically developing" kids and kids with identified delays or disabilities.  This year, 10 out of the 12 kids in the program are on IEPs because the need in our community is so great.  In addition, a staff person was cut from the program and another retired; both positions were replaced by one teaching assistant who was then assigned to serve primarily as a 1:1 aide for another student.

We have had concerns since the beginning of the school year that Hannah's needs were not being met, and we had a series of meetings with the teaching staff as well as the director of special ed to try to address this, and we pretty much got nowhere.  It's been an exhausting, time consuming process.  We've learned A TON about advocacy, special ed regulations, the "process" by which decisions are made in our district, and the pitfalls of our district.  We got to the point where we decided to focus our energies on next year and leave things where they are in preschool because it's already April.  I also decided I wanted to try to tackle these issues on a larger scale, by forming a group of parents in similar situations because I have been hearing informally from many people who are also experiencing frustrations advocating for their kids in our district.  We really love our community and don't want to jump ship without seeing what we can do first to make things better for Hannah, and all kids.  So I'm trying to figure out how to address this beast that is special education in a time of budget cuts, etc.  I've created an online forum for parents to share information and resources, and am looking into getting some trainings in our community for parents around the IEP process, advocating for your child, and parents' rights. I would like to attend a school board meeting to ensure that board members are thinking about and aware of the concerns of families like ours, especially when they are making budget decisions.  Ultimately, I would love to follow the model of states like Massachusetts which mandates that all school districts have a parents advisory council which works with school boards around issues in special education.

For now though, we are trying to get through the transition process for Hannah and I am trying to stay positive, that all of her needs will be met and that she will thrive in full-day kindergarten.  There is a lot the school will need to put in place to ensure she is well-served, and I'm very concerned they will not be able to get their act together to do it all by the first day of school.  More so even than having the ramp into the building fixed, I want to be sure that those who are going to work with Hannah are well-trained in what she needs, which is mostly something akin to an unobtrusive "shadow" who will intervene only when necessary, to ensure Hannah is positioned properly to do her best work and participate in all aspects of the curriculum with her peers, whether that is on the playground, in art class, or when sitting in a circle at morning meeting. 

This is going to be a tall order, because just as we are trying to put into place all of the things Hannah will need to succeed in school, Hannah is becoming super aware of and sensitive about her differences.  Just today she said to me, "Mommy, it makes me sad that I can't walk like Sam and Isabelle.  I know I need a walker to get around on my own, but I don't want to have to use it all the time, and it makes me sad."  More and more often, Hannah balks at having to use specialized equipment of any kind, anything that makes her stand out from her peers.

This has got me thinking so much about inclusion, and what that really means and looks like.  I attended a conference last week for families, service providers and caregivers of children with special needs and the keynote was Kathie Snow, who is an author, public speaker, and consultant on disability issues, inclusion, People First Language.  Her website, Disability is Natural, contains books, articles, and many more resources on how best to help people (and especially children) be fully integrated and included in their communities and not stuck in what she calls "disability world."  Her ideas are thought-provoking and provide a pretty stark contrast to the "therapy, therapy, and more therapy" model we've been engaged in since Hannah came home from the NICU.  Although I'm not ready to throw all of that therapy out the window, as I listen to Hannah's concerns, fears and questions about her disability, I wonder about how we can honor who she is and what she wants out of life while also helping her achieve her full potential.  And now that she will be going to school full-time and her peer group will become more and more important, I want to be sure she is able to participate in that group as much as possible and not be isolated or segregated into "disability world," a place she has no interest in being.

I have a lot more thinking and reconciling to do around these issues, and next week we're off to Children's Hospital of NYC for a second SDR consult and to possibly set a date for the procedure, which makes me think even more about whether or not this is the right thing for Hannah, and how we can pursue something like this while at the same time, preserving her sense of self.

A lot to digest...and a lot to write about! This is what I get for not writing anything in six months...