Sunday, November 11, 2012

Fall Fun

Who doesn't love fall? It's got the best weather, the best foods, and countless reasons to get together with friends and family to enjoy both! We've been doing alot of that this activity after another, each one more fun than the last.

 First came a day at the Corn Maze at Blue Jack Ridge. This was our first time, and we were excited to go with several friends' families. It was so much fun! There were rides, petting zoos, pig races, and a hunt through the woods for "gold" and arrowheads. The kids had a blast...I can see this becoming a fall family tradition.


Next was the Garden Party at Summer Grove Farms. This a major fundraiser for New Heights Therapeutic Riding Center where Maddie does horseback riding for therapy. It is a wonderful place that has brought tremendous progress and results for her since starting there. We are firm believers after seeing Maddie's improved balance and coordination, so we were thrilled to again be asked to participate in this fundraiser. This particular event takes place on the most beautiful property, and is catered by the best of New Orleans music, gorgeous a word...perfect.


A few days later was Halloween, and all the cuteness that comes with Trick or Treating!  The kids each picked their own costumes, so it came as no surprise that Mason was a Storm Trooper, and Maddie was Ariel.

These kiddos never disappoint when costumes are involved...they looked great, and had such a fun time! Seeing them trick or treat this year again reminded me how fast the time is flying...They look so big. Sigh. So that's what we've been up to...and I know this should have been 3 separate posts but I never know when I'll have a chance to blog these days, so this may be nuts for the winter! :) Till then...Happy Fall y'all.

Friday, October 26, 2012

October 2012

So October is in full swing...and, as usual, so are we. Life has been so hectic around here lately, and it seems the harder I try to keep up, the more things go haywire and leave me further behind. Yesterday was one of those days. I got locked out of my car while pumping gas, making me over an hour late to pick up the kids...Then, less than a minute after leaving the school parking lot, my car got slammed into from behind. Days like these make it hard to slow down and just enjoy life. And usually I make an effort...especially this time of year. This has always been my favorite time of year. The shift of the seasons, the football, the food, the smell of apple cinnamon and pumpkin candles burning, and the anticipation of everything to come...Its a great time of year, and it holds the promise of so much to look forward to.

 We've been pretty busy around here. We've had birthday parties for the past 3 weekends in a row. One of those was Mason's.


My little guy turned 6 this year, and we celebrated it with a dino party.


He's into all the things you would expect. Just one look through the mountain of gifts tells me just how much he's growing up... Buzz and Woody have been replaced with light sabers and dart guns, and Little People sets are traded out for Hot Wheels and Angry Birds. My guy is getting He is loving Kindergarten and all the glory that comes from being the "big kids" of the school.


Maddie is enjoying preschool, and has adapted well to the ever-changing parade of therapists she now sees. We recently had our second IEP. to discuss the findings from her re-evaluation. This time around, she qualified for both PT and OT, which was a huge victory for us. The downside is she only gets 7 minutes per week! LOL This translates to a once-a-month check in for about 30 minutes from PT and OT. So basically, they are tracking her...Period. I'm still glad for the extra eyes on her, even at such a minimum. Our schedule is nuts, so really, unless the therapies would have occurred within her school, I'm not sure how we could have fit anymore in. Between APE, swimming, hippotherapy, and Mason's soccer schedule, we are pretty booked up. This weekend Maddie will ride in her 2nd Garden Party at Summer Grove Farms...a huge fundraiser for New Heights Therapeutic Riding Center. This week I saw the invitations that went out to hundreds of people...


Crazy, huh?!

 I couldn't be more proud of this little girl. I love that people remember her more for her personality than anything else. She is such an amazing example of all the incredible kids out there making the most of the hand they were dealt. October means alot of things to alot of people, but for us it is Spina Bifida Awareness month. And although most of the time I try to keep the special needs stuff pretty low-key, during this month I do my best to let people see that side of us. Mainly because these kids are amazing, and they work so very hard to do the things most of us take for granted, yet often their needs don't get the attention that other special needs get. And because of the lack of information out there, people also have a lack of understanding about what SB is and what it means. Many of my friends have been posting tidbits of SB information every day this month, to better educate others....and I wish I could do the same. Instead I will recommend checking out and, as always, feel free to ask me! We really are just a normal family, with a little extra on our plates...Extra challenges, extra worries, extra fears, as well as extra triumphs, extra joys, extra blessings, and extra appreciation for what really matters in life. Those who really know us can tell you, our family is not defined by SB, and neither is Maddie. She is known more for her sassy cowboy boots, than the little pink braces she wears beneath them. And that suits us just fine.


Wednesday, August 15, 2012

So long, Summer!

Do you ever get so caught up in the day to day stuff, that you completely miss the big picture?  Today I realized that summer is over....How could I not, right??  The stores are packed with school supplies, Halloween candy is popping up everywhere, and Hobby Lobby has the Christmas decorations out.  How could I miss it?  I think I missed it the way I miss most rushing around from one thing to the next, never slowing down long enough to see what I might be missing.  It's sad, really, because I looked forward to this summer for so long...the last summer with Mason before he starts kindergarten, and goes to school 5 days a week.  But just like everything else, it goes so fast. 

In all the craziness, I've really neglected my little blog, and alot has happened that I need to catch up that's what this is...a "better late than never" post.  :)

Saying Goodbye...

 The week after the IEP, we had all of our final sessions with our Early Steps team.  We've been dreading this for a long time, always knowing that it would end once the third birthday rolled around...and it did.  There were hugs, and some tears, but mostly just happy reminiscing of all the amazing moments we've witnessed in these last 3 years. We've all learned so much from each other, and from Maddie.  It's been an incredible journey, and I know it isn't's just a new chapter.  These special people who we have come to love, might not be in our home with us each day, but they will always be in our hearts...cheering Miss Maddie on every step of the way.  Thank you doesn't even come close to the gratitude I feel.

Happy Birthday Maddie!

My Sweet girl turned three this summer!  Maddie's birthday party was such fun!  She is a huge Ariel fan, so we wanted our favorite Little Mermaid to be a part of her big day.  Here are a few highlights...

Party Time!

Big Brother and Little Bear

Cake Table

My Birthday Girl

It was a blast, as you can probably tell from this post-party pic...

SB National Conference

So a few days after Maddie's party, I was on a plane for Indianapolis, to attend the National SB Conference. I had the privilege of attending it last year, but I found myself really overwhelmed. This year felt different. This year I tried to only take in sessions that applied to our current situation, and not focus too much on all the issues that may, or may not be in our future. It was a better strategy, and I left feeling so much better about everything. It was a great experience, and another amazing opportunity to spend time with all my friends from across the country. Love you all!

When I got back to New Orleans, this is what was waiting for me...

It just doesn't get any better than that. :)

Sunday, July 8, 2012


So we made it through June...The last few weeks were so incredibly busy, and for awhile there I felt completely overwhelmed, but we got through it...It's July now, and I can breathe again.

First was the IEP. It was scheduled the week before Maddie turned three. I had so many questions leading up to it...about goals, about qualifications, and about just what I could expect at the meeting. There's nothing more nerve-wracking than stepping into a situation unprepared, and I felt the need to learn everything I could before it came. I called my local parent advocacy office for advice often. One of those days, I waited to get a call back and it never came…so I called a different branch. The person who took my call was the authority on all things IEP. I had a basic question about one of my goals, but she wanted our whole backstory first. When she heard what little Maddie had been qualified for she was livid. She insisted that we fight the evaluation results…That we push for reassessments in OT and PT. She cited laws and cases until my head was swimming. I was past this…I had decided to take what we were given and possibly ask for a reassessment in 6 months or a year….Not now. Not 4 days before the IEP. But here I was listening to her go on and on about what Madison deserves, and I realized I couldn’t walk away from this without feeling terrible about myself…and wondering if I should have done more. So 4 days before the IEP, we decided to fight.

I worked my tail off all week, reading up on the disabilities handbook, learning Bulletin 1508, and relating each issue back to Maddie’s Pupil Appraisal. The driving force behind all of it was the advocate from the other office, so you can imagine my frustration when I learned she wouldn’t be attending the meeting. Instead I received a call from the advocate in my district, saying she would be attending with me. And then to my complete shock, she announced that she would not be allowed to speak on my behalf at all in the meeting…Seriously?!? She said they had been reprimanded because they are a state-funded organization, and could not argue for parents with the state-run school system. I was baffled. What does an advocate do then? Apparently they sit quietly, while we make cases for our kids… Luckily I didn’t need her to speak. I had documented everything; I had our therapists there backing me up, and the school made no arguments against our requests. It went really well, in fact. Maddie will be reevaluated in August by a completely different team, and we will go from there. Aside from that, we still managed to get all of our goals in the existing IEP, so I feel good about it either way….but mostly, I’m glad it’s over.

And just because no post is complete without some pics... Here are the bugs at Mason's T-Ball party that weekend.

The next week was Maddie’s birthday party, and our final sessions with our EarlySteps team….stay tuned.

Thursday, June 7, 2012

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'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.

Tuesday, May 15, 2012

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 

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
3030 East Causeway Approach
Mandeville, LA 70448 []

Senator Norby Chabert
P.O. Box 2417
Houma, LA 70361 []

Senator R.L. "Bret" Allain, II
600 Main Street, Suite 1
Franklin, LA 70538 []

Senator Sherri Smith Buffington
9973 Mansfield Road
Keithville, LA 71047 []

Senator Dan Claitor
7520 Perkins Road, Suite 160
Baton Rouge, LA 70808 []

Senator Ronnie Johns
1011 Lakeshore Drive, Suite 515
Lake Charles, LA 70601 []

Senator Eric LaFleur
P.O. Box 617
Ville Platte, LA 70586 []

Senator Fred H. Mills, Jr.
800 S. Lewis St., Suite 203
New Iberia, LA 70560 []

Senator Edwin R. Murray
1540 N. Broad St.
New Orleans, LA 70119 []

Senator Gregory Tarver
1024 Pierre Avenue
Shreveport, LA 71103 []

Senator Mack "Bodi" White
808 O'Neal Lane
Baton Rouge, LA 70816 []

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.

Friday, May 4, 2012

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, please. :)

Tuesday, April 17, 2012

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.

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