Back to Life

It's been a month since our vacation, and I think we are finally back to reality.  For the first few weeks we were still on this crazy, Disney-induced high...the kids reliving every detail of the trip, looking at photos, maps, and begging to go back. We reluctantly settled back into our normal routines...therapy, T-ball, and work.  And I was forced to re-visit the transition mess that I so gladly had left behind.  It was still here...waiting.  And now we have only 2 short weeks left with our team, before it all ends.  Maddie's last evaluation is tomorrow.  (this one's for the waiver qualifications)  And I expect the IEP to be scheduled any day now.  It's all happening so fast...and I've dreaded it for so long, and now that it's almost here, I just want to get it over with and move on.  I'm tired of fighting.  I'm tired of trying to prove my little girl needs their help, when deep down I really believe she can do anything.  Yes, physically she's got limitations, and she is aware of them...which breaks my heart.  But her spirit is more independent that anyone I've ever met.  She will not settle.  She doesn't quit.  And she inspires me to do the same. I'm not sure what happens next for us.  This road has taken me to a place I did not want to go...it's not comfortable.  There's no safety net, and I'm scared.  But maybe that's the point...Maybe I need to learn to trust more, and know that everything will still be ok...even if it doesn't go like I planned.  I'm trying...I really am.  I'm walking a fine line between acceptance, and kicking and screaming the whole way.  It's not pretty.  Thankfully, these kids make it so much better.  Seeing them soaking up summer, and taking each day for the joy that it is, and the possibllity of what it could be...Helps me keep things in perpspective.  It's all about them.








It's about playing ball in the backyard...








It's about her happy/sad faces...




It's about freezy pops on a hot day...






What color's my tongue mom?





It's about loving them at this age, knowing how fast it goes, and making sure I don't miss a thing.

Make A Difference

There have been lots of time when I've read petitions for one cause or another, and sometimes I've signed, but sometimes I let it go, and later wondered if I could have made a difference.  This one hits so incredibly close to home. This is too important to let it go...I have to be heard..I need to make a difference.  And I need you to help too.

Due to recent budget cuts, Louisiana is facing the elimination of several health programs, including our Early Intervention program.  Early Steps made such an amazing difference in our lives.  Maddie was never supposed to walk...she runs.  Early Steps comes in at the very beginning, and provides critical therapies when they are needed most.  By starting from day one, they give these kids the best chance at reaching their full potential.  I can't even imagine how different things would be for us right now, if Early Steps had not been available to us.  Please help us save this program, and give our kids the opportunities they deserve. 

You can help by emailing your senators using the links , and sample letter below,

 AND/OR you can click to sign the petition at Change.org 

http://www.change.org/petitions/louisiana-legislature-house-senate-appropriations-committees-save-early-steps-la-s-early-intervention-program?utm_medium=facebook&utm_source=share_petition&utm_term=share_page_mobile

Thank you for helping make a difference.

Contact Senate Committee before Friday, May 18th to protect services for people
with developmental disabilities. Please ask your family and friends to do the same!

On Friday, May 11th, the House stripped $268 Million from the budget (HB1).

The bulk of those cuts ($100 Million in state funds) will come from the Department
of Health and Hospitals (DHH). This is in addition to the $57.7 Million cut from
DHH by the Appropriations Committee.

If not restored by the Senate, these cuts will result in:

* 9.7% Medicaid provider rate cut
* Elimination of EarlySteps
* Elimination of Early Childhood Supports and Services
* Elimination of Adult Protective Services
* Elimination of State Funded Personal Care Assistance Program
* Closure of Central State Hospital
* Not filling 168 NOW slots created through attrition
* Reductions/eliminations in numerous other DHH programs/services.

Contact (call, email, and/or write) the committee member(s) in your region and Chairman
Donahue if you want to protect services for people with developmental disabilities.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Contact Chairman and Members of Senate Finance in Your Region
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

To call a Senator at the Capitol: 225-342-2040

Senator Jack Donahue http://senate.la.gov/Donahue/

(Chairman)
3030 East Causeway Approach
Mandeville, LA 70448
donahuej@legis.la.gov [mailto:donahuej@legis.la.gov]

Senator Norby Chabert http://senate.la.gov/Chabert/

(Vice-Chairman)
P.O. Box 2417
Houma, LA 70361
chabertn@legis.la.gov [mailto:chabertn@legis.la.gov]

Senator R.L. "Bret" Allain, II http://senate.la.gov/Allain/

600 Main Street, Suite 1
Franklin, LA 70538
allainb@legis.la.gov [mailto:allainb@legis.la.gov]

Senator Sherri Smith Buffington http://senate.la.gov/Cheek/

9973 Mansfield Road
Keithville, LA 71047
smithbuffington@legis.la.gov [mailto:smithbuffington@legis.la.gov]

Senator Dan Claitor http://senate.la.gov/Claitor/

7520 Perkins Road, Suite 160
Baton Rouge, LA 70808
claitord@legis.la.gov [mailto:claitord@legis.la.gov]

Senator Ronnie Johns http://senate.la.gov/Johns/

1011 Lakeshore Drive, Suite 515
Lake Charles, LA 70601
johnsr@legis.la.gov [mailto:johnsr@legis.la.gov]

Senator Eric LaFleur http://senate.la.gov/LaFleur/

P.O. Box 617
Ville Platte, LA 70586
lafleure@legis.la.gov [mailto:lafleure@legis.la.gov]

Senator Fred H. Mills, Jr. http://senate.la.gov/Mills/

800 S. Lewis St., Suite 203
New Iberia, LA 70560
millsf@legis.la.gov [mailto:millsf@legis.la.gov]

Senator Edwin R. Murray http://senate.la.gov/Murray/

1540 N. Broad St.
New Orleans, LA 70119
murraye@legis.la.gov [mailto:murraye@legis.la.gov]

Senator Gregory Tarver http://senate.la.gov/Tarver/

1024 Pierre Avenue
Shreveport, LA 71103
tarverg@legis.la.gov [mailto:tarverg@legis.la.gov]

Senator Mack "Bodi" White http://senate.la.gov/White/

808 O'Neal Lane
Baton Rouge, LA 70816
whitem@legis.la.gov [mailto:whitem@legis.la.gov]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sample Letter
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Subject line of your email or at the top of your letter:

Restore cuts to DHH made by the House and Appropriations Committee!

Include information about yourself and your family member in your letter.

This can be in a few short sentences. You may want to include:


* Your name/the name of the individual with a disability you are advocating for
and his/her relationship to you
* The diagnosis or disability of this individual
* How these cuts would affect your family or people you care about

Include this message:

Please restore ALL of the funds to DHH cut by the Appropriations Committee and the
House. These funds are needed to provide critical services to our state's most
vulnerable population.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm All Ears

It's almost here... And these two are excited.



This guy has been counting down the days for 2 months, watching the Disney trip planning video, and studying the park maps like there's gonna be a quiz. He can't talk about anything else...He. is. pumped. And I love it.



This little girl can't wait to see Minnie. She has learned all the important princess songs, and will sing them for anyone who will listen. Her brother's excitement is contagious, and she has definitely caught it as well.

.

I'm excited too. I've got the matching shirts...



And the surprise Goodie Bags...



I'm just so ready to watch them take it all in for the very first time. I'm ready to feel the magic...



In 24 hours the car will be packed, and we will be almost ready to load up our sleeping bugs, and be on our way. I can't wait!

................................................................................................................................................................

And in other news... This Thursday was the staffing meeting to determine Maddie's eligibility for services from the school system. It didn't go well. Maddie did not qualify for PT, PT tracking, OT, or Speech. (for those wondering about the speech: She has a stutter that surfaced about 5 months ago that has not resolved) The only service she has qualified for is adaptive PE. Needless to say, I was stunned...and angry. And there were tears. Lots of them. I sat there, feeling helpless, and listened to their PT list off every challenge and difficulty Madison has, and explain why it doesn't factor into her educational environment. It doesn't matter. It's not their responsibility because it won't effect her ability to learn. To be honest, I knew after her evaluation that it would be difficult for her to get PT, but I always expected tracking. Tracking allows the child to be on the radar of the PT...They check in on them, and talk to the teachers about any issues. They are just simply "aware" of the child, and make sure any issues are addressed. I am frustrated, and I'm not sure how to proceed. I'm not sure if another evaluation would make any difference, and if it did, would the service even be worth the fight? I don't know. I do know I will continue to do everything I can to make sure Maddie's needs are met...even if I am the only one meeting them. And now I'm going back to my happy place, because in 24 hours we will be on our way, and I will not let this bring me down. I'm done. I'm spent, and I need a vacation. I need some magic...now, please. :)

Family Picnic 2012

I love looking back at older posts and seeing how far we've come over the years. It helps me, in moments of uncertainty, to go back and remember the things I worried about a year ago, and know how they actually turned out. The Family Picnic is one of those posts that changes year to year.

For the last 3 years we have attended the SBGNO Family Picnic at Lafreniere Park. Each year has been an entirely different experience for us...

The first year we sat under an oak tree,at the base of an enormous hill nearby. We watched kids of all different abilities make their way up that hill, grinning ear to ear with pride. Walkers, wheelchairs, crutches,and braces....It didn't matter how they got to the top... just that they got there. I looked at my 10 month old and wondered how, if, or when she would make her way to the top.



Last year, we took our place again under the oak tree. Maddie had started using a walker, and was doing well, but still needed alot of help. It took all of her energy to move it through the grass, and she wasn't ready for inclines yet.



As I sat under that tree I watched another little girl make her way to the top of the hill...She had blonde hair, and bright pink crutches. She was inspiring.




I looked over at Maddie, and felt such pride at how far she'd come, and hope for the day she too would climb to the top.





This year she was ready. This year she made her way to the top of that hill, first holding my hand, and then again all on her own. This year her face said it all. It's hard to put into words what I felt while watching her. Joy...Pride..relief.







I think as parents, we all want our kids to succeed...At the end of the day,we just want them to believe in themselves, and believe that if you have faith and never give up, anything is possible. There's nothing more heartbreaking for a parent, than seeing your child lose faith in their own strengths and abilites. And as much as I try to encourage my kids, and cheer them on in all that they do, it can't compare to that single moment when they attempt and succeed at something entriely on their own. The shy, proud smiles, the look in their eyes as they glance to make sure I'm still watching...It does my heart good to see them finding their own independence...and serves as a reminder for me to stop worrying about the future. These kids are incredible, and one way or another, in their own way, in their own time, they will always make their way to the top.

Not Without a Fight

I hate it when I worry myself silly about something that turns out to be nothing...but even more than that, I hate it when I worry myself silly about something that turns out to be something.
So this whole transition process just sucks. We are losing our much-loved Early Steps team, and moving into unfamiliar territory. And from the start, I've felt uneasy about this process....but I convinced myself that everyone feels this way. Then came the first transition meeting, complete with condescending remarks about my "expectations" for Maddie's therapy within the school system. After that a new concern emerged...What if she doesn't qualify for these services? Is it even possible?? Everyone told me not to worry about that...She has a diagnoses, she will most-definitely get the services she needs...Relax! So I tried. But I couldn't shake the uneasy feelings and worry.
So Maddie had her screening this week, and now I know my worries and concerns were totally valid. She rocked it...like blew them outta the water, awesome. They couldn't get over her vocabulary and how logical her thought process was. She charmed everyone in that place, and I was proud. But the area I was most concerned with was the PT screening...which was really non-existent. There was a small stair-stepped bridge that they asked her to walk over...She said "I need some help", so the lady offered her one hand. Maddie says, " I need 2 hands to do it", so the lady takes both of her hands and helps her over it. That was it. The entire mobility portion of the screening was those steps, and she couldn't do it without help. So after all the exams were complete, I made my way to the desk for the paperwork, and was shocked to hear the same lady say, "We really don't even need to schedule a PT evaluation, because she has AFO's and gets around fine with those." Surely. not. I turned around to look, and said, "What do you mean, no PT evaluation?" They then explained to me that it was "highly unlikely" that Maddie would qualify for any PT services...Adaptive PE only. I was baffled. "How can you possibly form an IEP for a child with Spina Bifida, and NOT do a PT evaluation??!! It was on, and the claws were out. After some discussion (mostly tearful rambling on my part) they decided that since Maddie was already getting PT through Early Steps, it would be best to go ahead and do a PT evaluation just to "cover all their bases". Wow. All along, this has been my nightmare. We've been denied for everything under the sun because Maddie is just "not disabled enough". Please don't get me wrong....I am so completely grateful that she is doing so well. And yes, like many have told me, I understand this is a good problem to have. But it doesn't change the fact that when Earlysteps ends in June, so does all of Maddie's therapy that came with it. We are completely depending on the school system to pick up where they leave off...and now I'm not sure if they will. I hope and pray that if Adaptive PE is all she gets, then it is also all she needs. And I have to trust that this will all work out just fine...but for now, I'm worried.

3 Years Later: Someone Else

March 17th will be 3 years since first hearing that Maddie would have Spina Bifida. Three years since receiving that phone call that changed everything. In that moment I felt as if my world would never be the same. I was so completely broken, that letting myself go there…even now, is still difficult. It’s difficult…but not for the reasons it used to be. Now, it’s hard for me to remember the thoughts that consumed me then, because I realize how wrong I was. I often wish I could go back and somehow shake myself out of the depression that robbed me of so much joy in my pregnancy. Just to go and tell that girl “You can do this!” “Everything is gonna be ok.” If I could have looked into our future, and seen what an amazing little girl Maddie would be, and how truly happy our life is, I would have saved myself so much stress. I wouldn’t have cried myself to sleep for more nights than I care to remember. I would have loved my baby girl, and looked forward to meeting her, instead of worrying so much. I would have focused on everything that was right, instead of wondering how things had gone so wrong. I can’t go back there and undo what’s done. I can’t take away the thoughts and prayers that I am ashamed to have prayed. What I can do is take every opportunity to let the world see, that the things that make my daughter “special” have nothing to do with “special needs”…That her laugh is often the highlight of my day…and that every parent should be so lucky to be blessed with a little girl like this.



I often reflect back to the beginning around this time of year…I remember the emotions like it was yesterday. So you can imagine my surprise when just a week before our D-day rolled around, my Doctor’s office calls again. But this time it was someone else. Someone else had received that dreaded phone call. Someone else saw their dreams fall apart. Someone else felt broken, and felt their baby girl was broken too. My heart ached for her. The nurse asked if she could put us in contact, and I said “absolutely”. My phone didn’t ring, and my heart sank. I knew what she was feeling. I knew she wouldn’t call. I remembered my unanswered prayers…they all involved setting my girl free from a life of pain and suffering. I needed this woman to know, it isn’t a life of pain and suffering at all…It’s everything I ever dreamed it could be. I emailed her my blog, and she saw my Maddie. She saw our crazy, normal life. She saw a happy family, with special needs, that wouldn’t trade our life for anything. She saw hope…and what looked like the end, suddenly became a beginning. So three years later, we’ve come full circle. Another sweet baby girl will come into this world and face all its challenges head on. Another family will be changed…for the better. And someone else won’t have to cry anymore.

Sometimes I lose sight of the big picture. Sometimes I forget how we got here, and how our life was before. Our life is great today, and Maddie is doing awesome. We’ve settled into a comfortable routine that involves preschool, therapy, soccer, church, and so much more. SB doesn’t play the role it used to play…so it’s easy to forget. But moments like these, where I actually see how our journey can make a difference to another, and I remember. I remember how D-day rocked my world. I remember how desperate I was for answers, and how much it hurt to breathe. And I hope I always remember…. Because even though that kind of pain is a distant memory for me, for someone else, the journey is just beginning, and they need to know, “You can do this, and it’s gonna be ok.”

Sophie the Shunt turns Two!

I should preface this by saying I've been home sick for a few days, and I'm totally hopped up on cold meds...so if this reads a little crazy...my bad.


So after last year's shunt birthday post, it was highly recommended that we name Maddie's shunt. Seemed like a no-brainer...we name everything else, from loveys to bath toys...and being that this is actually a part of Maddie, it is also part of the family. So what to name it? It needed to be tough...because, obviously Maddie's tough, and her shunt has worked perfectly for 2 glorious years now...so no pansy-names would do. It needed to be a girl name, because anything else just seemed weird. And it needed to fit...you know how some people's names just "fit"? Like I remember after I delivered Mason, the lactation consultant that met with me in the hospital was named "Flo"...go figure. (I came very close to using that same name for the shunt, for the same obvious reasons, but nothing can beat a lactation consultant named Flo...just sayin.)

So, on our two year anniversary date of Maddie's shunt, I am happy to introduce Sophie. She has been a hard-working, well-behaved shunt for two years, and I am so very grateful. She has allowed my girl to go above and beyond the expectations that anyone ever dreamed possible. We have never made a trip to the ER...ever. (and I'm knocking on wood as I type) We have only had a couple of moments of concern...that thankfully, turned out to be nothing. Shunts are tricky little things. It is always in the back of my mind, every time she falls and bumps her head, every time she gets sick, and every time anything seems amiss...I automatically think to blame Sophie...which doesn't seem fair considering how good she's been to us. But that's how this relationship works. She works hard to keep dangerous fluids from putting pressure on Maddie's brain, and I work hard to make sure she's still up to the challenge. So today I am so happy and grateful for this shunt, and I am saying Happy 2nd Birthday Sophie! I hope we have many more together...