IEP (by Lindsay)

IEP.

Or "Individualized Education Program". 

Something that Michael and I are all too familiar with, being teachers.  

As stated by Wikipedia, 

"An IEP defines the individualized objectives of a child who has been found with a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would.^[1] In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers (such as paraprofessional educators) understand the student's disability and how the disability affects the learning process."

This past Monday, Michael and I had our first IEP meeting with the team at Ella's preschool, Ann Reid Early Childhood Center.  The team consisted of the assistant principal, Ella's teacher for next year, school nurse, social worker, physical therapist, occupational therapist, speech pathologist and psychologist.

When we arrived, we were a little concerned with how well we would be able to give our full attention at the meeting, as we had Ella with us.  Typically, the children are expected to stay home during these meetings, but at the last minute, we needed to bring Ella with us (due to the fact that she would be needing a feed during the meeting and our babysitter who is trained at giving her feeds was unable to watch Ella at this time).  

Right before we were called back to the meeting, one of the staff members approached us and asked if Ella would like to join the class she will be in next year, rather than sitting through the meeting with us. Of course, Ella was SO excited to go to her classroom and we were more than happy to let her!

So Michael and I were able to sit, uninterrupted (except when Ella's feed finished), through our first IEP meeting.

To say we were impressed (once again) by Ann Reid Early Childhood Center would be an understatement.  We've heard from others that while services provided by school districts can be good, we'll definitely need to have Ella in additional private therapies to have her needs truly met.

But Ann Reid is different.

Ella will be receiving more minutes of physical and occupational therapy each week than she is currently receiving through Early Intervention.  And her school therapies won't only be focusing on the learning environment, as we've been told by others.  Her therapy will also be focusing on SMA.

In addition to her official physical and occupational therapy sessions throughout the week, Ella will spend time every day in a stander that the school purchased just for her.  She will also practice walking with parallel bars and/or a gait trainer every day.  They also discussed how the classroom assistants will work with Ella on various skills each day (sit-to-stand, standing at the Smart Board, hanging her coat and backpack on her modified cubby hook, etc.).  At one point, as the physical and occupational therapists were going over all of this information, I had to fight back some tears.  I was so overjoyed with how this team is going to care for Ella while she's at school.  

After the meeting was over, and we had goals set for Ella's first year of school, the physical therapist took us on a tour of the building, ending at Ella's empty classroom (where we thought she would be).  She ended up being at an Earth Day assembly with the rest of the class!  It turns out she had been quite busy while we were at the meeting!  She met some other students, participated in centers, did a butterfly art project and got to play outside on the handicap accesible playground!

Ella's Butterfly Art Project

I don't think I've ever seen Ella as happy as she was when she told us about her many adventures in her preschool class.  She is SO excited to start in the fall!

Michael and I are so very blessed to live in a community with such incredible resources and educators!  We have no doubt in our minds that this is where Ella is meant to be and that she will flourish at Ann Reid!

As I Look...(by Michael)

My computer at work has a picture of Lindsay and me on our wedding day as its desktop picture.  I get to see my beautiful wife throughout my workday as well as travel back to a time that seems, in retrospect, so much simpler.

I look at our eyes in the picture, for they say that the eyes are the "windows to the soul", and I see eager anticipation.  I see two people who found each other in a world that is complicated and unpredictable.  For myself, I had found someone after many years of searching, waiting, and wondering.  I had found someone with whom I knew was to be with me until the end of time.  I feel the same sentiment from her...each and every day.

I look at the picture and I can see our optimism.  I can see that we had no clue, no idea, no inkling of what our lives would become after we were to leave that church.  Honestly speaking, I wouldn't change it for the world.

We have three beautiful children.  Each one of them a pleasure to know.  They have given us a way of looking at the world that has long since been gone from our psyches;  the perspective from a child's vantage point...one of innocence and unconditional love.  Wonderment and idealism fills their world and they share that with us.

We have family and friends that care for us in a myriad of ways.  The celebration of our marriage on August 11, 2006 has carried over through the years as we have celebrated the births of our children, the holiday traditions (both old and new), and the good times we share.  Life is certainly unpredictable and throughout the times that have been the most difficult we have leaned on one another, seeking and receiving comfort and consolation, help and assistance, goodwill and prayers, from our family and friends.

We live in a community that can and will provide an extraordinary education for all of our children.  Recently we completed the initial interview for Ella's (and Henry's) new preschool (The Ann Reid Early Childhood Center) and will put together her IEP (Individualized Education Plan) in late April.  We were quite impressed with the whole system.  We live in a community that  enriches our lives through excellent programs; a community that bestowed upon us the wonderful church we attend; a community that offers accessibility for Ella so she can play and interact alongside Ava and Henry. 

We have one another.  Five people living together. Living with the looming disease known as SMA.  Each one of us handles the disease differently yet I can feel, I can sense, a unity among us.  We laugh, we cry, we yell, we sing, we play, we work, we help, we argue, we pray.  And we do these together.  We are a family.

On the day we were married Lindsay and I had no idea what was to be in our future.  As I write this blog, I've no idea what is to become of the future.  Sometimes I am optimistic and other times I am not.  I do know one thing...

...as I look at that picture on my desktop at work (the one at the end of this blog) I know, deep in my heart and through the essence of my soul, that we are meant for one another...we are supposed to be here, at this place, at this time, with one another.  Our children, too, are meant for us and us for them.  Whatever happens, however things develop, one truth rings...we will always have each other.

Walk-n-Roll 2013 (by The Casten Family)

For most people, over 3 years of age, the act of walking is pretty much a non-thinking affair.  For most people that is.

There are those who simply cannot walk, for a variety of reasons.


Our daughter, Ella Sabine Casten (born on June 10th, 2010), was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 in August of 2011.

She's never walked entirely on her own.
   
Unless something changes...she never will.


SMA is a progressive, degenerative, neuromuscular disease that is considered (for Types 1 & 2) a terminal illness. The motor neurons (which control voluntary muscles) of its victims are affected.  People with SMA  lack the protein necessary to keep the motor neurons alive and functional...in response, the muscles atrophy (waste away) over time.  Swallowing muscles can also be affected.  In addition, respiratory muscles are affected, which is why the disease is considered terminal.  If a child with SMA gets a respiratory infection it can easily lead to death through the person's weakened ability to cough and/or breathe sufficiently to sustain their life.

Through the dedication of family, friends, doctors, and researchers the goal of finding treatments and/or a cure for SMA is slowly being realized.  The progress made since Ella's recent diagnosis has been incredible and very encouraging.  The hope we had in 2011 has increased since...and we look forward to a time when all people with SMA will live a full life.

In efforts to help researchers continue to make progress, Families of Spinal Muscular Atrophy (FSMA) is sponsoring The 7th Annual Walk-n-Roll Fundraiser on June 8th, 2013 in Libertyville, IL., which benefits FSMA as they support current research.

We participated last year as "Team ELLAwareness for SMA" and will lovingly do so again this year.

We invite you to join us in any way you can to help support the wonderful people of FSMA in their galant efforts.

Ways you can help:

• Join Team ELLAwareness for SMA and raise money.
• Join Team ELLAwareness for SMA with a donation.
• Join Team ELLAwareness and Walk with us on June 8th.
• Buy a t-shirt to spread awareness about SMA.*
• A combination of any of the above.

*We will be using the same t-shirts we had last year, so if you already have one and you'd like to join the Walk-n-Roll, you can simply pull it out and wear it on June 8th! 

Otherwise... 

ANYONE can order shirts from us 

before May 5th!** 

T-Shirt are $15 each

**We must have at least 12 adult t-shirt orders to fulfill the minimum requirements so we can place an order for adult sizes.

**We must have at least 12 children t-shirt orders to fulfill the minimum requirements so we can place an order for children sizes.

NOTE:  If we are unable to fill the minimum requirement for either adult and/or children sizes, we won't be able to place the respective order(s).

Adult Front

Adult Back

You may order shirts from us 

(before May 5th) at: ELLAwareness@icloud.com**

(Please include sizes and quantity)

• Adult (XXL, XL, L, M, S)  
• Youth (L, M, S)

Please follow the link below to access the 
"Team ELLAwareness for SMA" page:

Link:  Team ELLAwareness for SMA

The Casten Family

Being ok with OK (by Lindsay)

Today was kind of a hard day for me.

Change is always hard, even when it's for the better.

We added two new ways of doing things with Ella in the past week.  For one, she's wearing underwear now. And second, she's now doing all four of her feeding tube feeds during the day (instead of three during the day and one overnight).

The potty training was definitely initiated by us. We've been ready to be done with diapers for a long time, and Ella has been equally on board. And it's a good thing. Well, it WILL be a good thing, once we get used to it.

Switching Ella's feed schedule was initiated by a medical professional, and we further discussed it with Ella's neurologist and pulmonologist at Lurie Children's last week. We all came to the conclusion that if Ella does well without an overnight feed, it is actually safer for her.

Sleeping on a BiPap machine and doing a feed at the same time poses some risks.  Some air from the BiPap can (and most likely does) get into Ella's belly, which can cause some discomfort. It can also cause her belly to become too full with the added formula, allowing for the possibility for her to throw up (which could easily lead to aspiration since she's lying down...very dangerous).

We thoroughly weighed the pros and cons of the overnight feed, and together we came to the decision of trying to go without it.

Ella hasn't had an overnight feed since last Thursday, and she's actually done quite well.  She seems to be sleeping a little better (and it's one last thing we have to wake up for in the middle of the night!). She's getting used to having the extra volume during the day, because we still need to make sure she's getting all of the nutrition she needs.

But our days now feel very different.

Trying to fit four hour-long feeds in during the day has posed some challenges.  We have to be very strict with when we give them, so that no two feeds are too close together. So we do one at 7:00 am, one at 11:00 am, one at 3:00 pm, and the last one at 7:00 pm.

This new schedule changes a lot of things.

It changes Ella's nap time.  She used to take a nice long nap from 1:30 pm until 4:30 or even 5:00. Now I have to put her down at 12:30 and wake her up at 3:00 for her afternoon feed.

Our bedtime is different now. We didn't used to have a feed right before bed, so now we have to figure out a new time to do her Vest and Cough Assist treatments (they can't be during or right after a feed, because it could easily cause her to throw up).

And now I'm having to bring her feeds out and about with us when we didn't have to do it before.

And then there's the underwear. She's pretty much trained (but she did have a few accidents today at home...luckily not while we were out!).

But even though she's mostly trained, having Ella use the potty is really hard.

When Ella has an accident in her underwear, it's takes a good 5-10 minutes just to get her out of her old clothes and into new ones.  Last week, it wasn't a big deal, having two parents around and no time commitments.  But today was back to the reality of getting Ava and Henry to their separate schools on time, trying to run a couple errands, and being mindful of Ella's new feed schedule.

She also can't wear her TLSO brace on the potty because of the way she sits "in" the supportive potty seat...her TLSO digs uncomfortably into her legs. So taking it on and off every time is a pain since we have to lie her on the floor to do so.

And then handling Ella without her TLSO is just so hard.  On so many levels. She is so floppy without it and she can hardly hold her head up. So it's hard physically. But even more, it's hard emotionally.  Seeing my almost three-year-old daughter struggling so hard just to lift her head crushes my heart.

So today was my first day on my own during the day with these new changes.  It was hard.  I felt like I didn't have a second to breathe.  But mostly, when I did find those few seconds of calm, all I could think about is how much all of this sucks.  And how hard this life can be.  And will be.

As Ella gets older and bigger, on the one hand, we are more used to SMA.  But on the other hand, it just seems to get harder to get through each day, both physically and emotionally.

Normally I try to focus on the positives.  But today has just been a hard day, so I guess I needed to vent.

I'm sure we'll get used to these new routines, just like we have with all of the other "new routines" and everything will feel fine again.  Well, maybe not fine, but OK.

And I have to be ok with OK.