One step at a time

Emma all dressed up for a lunch cruise on the river.  It was a wonderful Emma/Mommy date!

The journey to find a kindergarten placement for Emma has been filled with anxiety for this Mommy.  It feels like it is a big decision and one we are not likely to change easily.  We are told you can change the IEP up once it is started, but my experience is that it is easier said than done so we are hoping to get it right the first time around.

We have toured the options the school district suggested.  None of them were a slam dunk.  We do have pretty significant ideas on what type of classroom, therapies, etc. we want for Emma and I think our visits to the schools clarified our vision so I'm very thankful for that.

It looks like we will be working with the district to find out exactly how individual they are willing to get for Emma's IEP (consider yourself blessed if you don't know what an IEP is - it stands for Individual Education Plan for those new to education & disabilites speak).  I've put a call into our district coordinator to start the discussions.

We are hopeful that it will come together, but I am sure that I will have a lot of angst until it does.  Hey, another few gray hairs on my head will likely go unnoticed!

I joke, but would really appreciate any prayers you could send our way until this is all settled.  Fingers crossed it will be before the new school year!

Progress, softball and other updates

We are fully immersed with life!  Is that a fancy way of saying we are busy or what??!!!

Emma has been getting glowing reports from school since Spring Break.  I mean, it is a bit ridiculous how good they are and I'm actually getting calls with the therapists so excited about her progress that they just have to call and tell me rather than write it in her communication notebook.  They really are that excited and I'm actually taking time to bask in the glow of the good reports!  I don't get them too often and I have noticed that they usually come after long breaks from school....so Emma's refusal to do anything that seemed like a bit of physical work during Spring Break seems to be paying off in dividends.  That's my girl!

We are still in tour mode of schools for Emma's kindergarten and likely her elementary school education.  We have a couple more tours and evaluations lined up and then I guess we'll meet with our school district to discuss our thoughts before we as a team decide her placement.  I do think it will be a hard decision, though, with pros and cons to the various placements.  We might even wind up with a hybrid plan since the district seems very open to creating an education placement specifically for Emma that addresses our wants for Emma.  Stay tuned for further details.

Julia has been enjoying her first softball season.  When asked if she wanted to go on a special lunch cruise on the river she declined in favor of her softball game that is scheduled at the same time.  She has been practicing a lot and it is paying off.  Sunday she had her first hit at bat and then had another hit as an RBI.  Way to go, Julia!  At tonight's game she had another two hits out of three at bats and her confidence in her abilities is gaining with each game.  We are excited to see how the season unfold for her and her team.  Tonight they had their first win and the girls were fired up over winning.  I just love all the energy they have and wish I could bottle a bit for me.

At school Julia attended an assembly for a movie about a child in a wheelchair and his friend who could walk.  Julia didn't mention it to me until the school told me about it and so I asked her to tell me about the movie.  She told me it was about a boy in a wheelchair who didn't have a ramp to get outside his house and play in the yard so when his friend came over to ask him to play he couldn't.  The friend then got some wood and built a ramp so the child in the wheelchair could leave the porch and wheel down to the yard to play.  Julia liked that the friend helped but didn't really comment on the wheelchair.  I took this opportunity to ask her some questions about what she thought about having a sister in a wheelchair.  She told me that she doesn't think Emma minds using a wheelchair and I agreed with her.  She then told me she loves having a sister in a wheelchair because Emma wins lots of prizes and she  shares them with the family.  I didn't understand this so Julia told me that Emma gets to go to lots of amusement parks, special rides on the Blimp, tickets to Disney on Ice and that it's just great because she always lets Julia go with her!  So there you have it - I'm so glad I asked ;-)

As for us, well, Chris is glad to be back at work in his normal routine after a week long stint at jury duty and I've been doing a lot of spring cleaning and still have a long ways to go.  It keeps getting cut short because of all the insurance calls (appeals in progress for the powerchair denials...), kindergarten legwork and visits along with the never ending sea of paperwork that I try and fit into the few days a week where I have a few hours without children around.  Plus I'm trying to purge a lot of our possessions and it just isn't going as easy as I thought because it seems I have a proclivity to want to hang on to things that I'm not longer using for "just in case."  Maybe it's time to watch an episode of Hoarders to kick me into high gear?  Knowing that we will eventually move again keeps me from moving this task to the bottom of my to do list where I would like it.

It is with sadness that I tell you sweet Gavin earned his angel wings.  RIP our little superhero.  Our prayers are with your family.

First Grade

Dear Julia,

As you start first grade your Daddy and I wanted to take a moment to talk with you and let you know how special you are to us.  We are so blessed to have you as part of our family!  I often refer to you as my sweet, sweet Julia because you are as nice and caring as it gets.  But you are so much more than a sweet little girl.

You are strong.  You do not like mean people and your feelings are easily hurt when people are mean.  You do not hesitate to stick up or yourself or for others that you feel are being mistreated.  This makes me so proud.

You are a leader.  People look to you on how to handle situations yet you have a quiet peace about you and do not need to be the center of attention.  But you don't mind if you are the center of attention either.  This makes you a great leader.

You contribute a lot to our family.   You help make the house run a bit better by cleaning your room, making your bed, and cleaning up your toys all without ever being asked.  I'm not sure how or why you started to do these things but I sure am glad that you do them!  Sometimes you like to surprise Mommy and go out of your way to make Emma's and Mommy's beds when all your work is done.  It is always a wonderful surprise and always makes me smile.

You are funny.  There are so many little things you do throughout the day that makes me laugh.  All these little things and silly faces really make my day brighter.  Thank you for sharing your silly side with us.

You are serious.  Sometimes so very serious.  This will serve you well as you navigate through life and I'm so glad you have such a funny, silly side that balances this out.

You are a natural born traveller.  You make yourself at home in planes, trains, buses, hotels, foreign cities and towns and roll with all the "things" that come with travel much better than most adults I know.  You have a bit of wanderlust that I think you got from your Mommy and we know that one day you will want to venture off on your own.  We will support you when that happens.

We continue to be amazed at how each year you develop and mature way beyond our expectations.  We have no doubt that this year will be any different.  We know you will learn new things, make new friends, and have fun-filled adventures.  And we look forward to supporting you every step of the way.

Love, 

Mommy

Here is what you had to say on your 1st day of 1st grade.  You wanted me to take a video and it was such a great idea I think we'll have to do this every year!  Maybe we'll add this to our back to school traditions along with our traditional Mommy/Daughter date night before school starts.

Busy

It feels like all I'm hearing about lately is back-to-school stuff.  But I don't feel a bit like we are ready for back-to-school and that's fine since the girls won't start the Fall semester for at least another 4 weeks.  That leaves us time to:

• Get Emma's secondary health insurance (Medicaid) reinstated.  Apparently our state thinks she moved out of the state and kicked her off.  We didn't move and have no plans to leave the state now or in the future, so of course we filed an appeal along with paperwork proving we still live here.  Nothing has happened since I filed so that warrants more trips to the public assistance office, calls to advocacy groups and me growing more gray hairs.  Fingers crossed this is cleared up.....again.  Yes, again.  They did the same thing in April 2012 - 3 months ago - but they responded quickly to my appeal then.  Why do they keep thinking we are moving?  
• Finish up Emma's re-evaluation for her IEP.  I wanted her to stay in the developmental delay classroom since she really started to make progress on her goals and have a major focus on communicating with the ECO2 communication device (WHY oh WHY does her Medicaid have to pick now to kick her off?  Right when we are in the process of trying to give her a voice via the ECO2 with ECOpoint computer???!!!!!).  The team was in support of this.  I also want to supplement that with with a wonderful typical preschool program I found in our neighborhood a few days a week.  The school is a great fit except it seems like I can't garner support for a one-on-one aide for the typical preschool placement - and Emma needs a 1:1 in order to participate in the curriculum.  Apparently the school is by law required to only support one placement.  We are working this all out and will need to agree to a placement soon if Emma is to start school on time.  We also need to revise her IEP since it expires the first week in September.  I see even more gray hairs in my future!  Stay tuned....
• Take a vacation.  We didn't take one yet outside of a day trip here and a night away there.  We have something planned for August and are looking forward to a bit of time away.  Some sun, fun on the beach, a few drinks and maybe I can fend off all the gray hair trying to sprout from my head!
• Make a little money.  I'm thrilled that I'm now working part-time for a former co-worker at a really cool company!  The work should take a few months to complete so I'm not getting back into working full-time or even for an extended period of time.  This will be just enough to get my feet wet in corporate America again while still managing to keep the girls out of day care - something very important to both me and Chris since feel Emma is making the best progress under our care.  And I'll be honest and say that it will be helpful to have the extra money.  The nice thing is that if the company likes my work and I enjoy working for them there could be the opportunity to extend the project to other areas.  For now I'm taking it one thing at a time.....

These girls are worth all the advocacy, sleepless nights and gray hairs.  Don't you agree?!

Adapted Computer Games

I am always looking for ways to incorporate technology options into Emma's entertainment and skill building (eye hand coordination, cause and effect, timing, etc.).  I have an older iBook that runs great with the internet and doesn't have any must-keep files on the hard drive so I've designated that as the girls' computer. 

Julia loves to play on the pbskids.org website and we have used the helpkidzlearn website with both Julia and Emma.  We also have a lot of files on powerpoint that move forward with a click of a switch but they don't seem to keep Emma's attention for too long.  Recently, Emma's teacher told me about the hiyah.net website and we are so happy that she did!  If you go to the website and select the Play Online tab at the top it brings you to a screen with a lot of different options.  We've only just started to explore all the options on this site so I can't speak for too many of the options, but I will say that we always wind up on Songs and Stories.  Clicking the Songs and Stories tab brings you to a screen of favorite songs - The Wheels on the Bus, Old McDonald and This is the Way.  Emma LOVES playing with these songs and you can open each of them in their own window so the song/game fills the screen.

We use the Don Johnson Switch Interface Pro to connect our switch to the laptop.  The school district had one available for Emma's use at home so we didn't have to buy one.  If you are interested in switch adapting your computer you might want to see if your school has one to lend out or if your state's assistive technology lending library has one available for you to "try it before you buy it."  We tried a couple fancier interfaces, but like this one the best.  

The really nice thing about the songs on this site is that there are so many photos to keep the child's attention.  For each line of the song there is a photo and to continue hearing the song the child needs to push the switch to get to the next line of the song along with a new photo.  This keeps Emma's interest up and she played the songs for about 40 minutes the other day with minimal assistance from me.  Ok, I'll come clean and admit that I hovered a bit while she was playing but she pretty much told me she wanted to do it herself.  She is really asserting her independence these days and is trying to do so many things herself.  Since there are so few things that Emma can actually do herself I was so happy to find a site that keeps her interest and has games that she can actually do all by herself!  That alone has me giving the hiyah.net site rave reviews.

For computer games I usually position Emma in her stander.  It is the perfect height for her to see the computer screen on the table and has a surface to position her switch.  It's also a way for me to sneak in some work on strengthening her neck without her realizing it.  

If you try out the website, let me know what you think.  And, if you have any other favorite websites that work with switches I'd love to hear about them - just leave me a comment or send me an email.  Thanks!

Transitions

This week is all about change for Emma (and me!).  Firsts, lasts and unknowns.  The reason for change is that Emma will turn 3 this week and age out of the Birth to Age 3 Early Intervention Program.  All the therapists that have come to our house the last few years will bid us adieu and Emma will move on to pre-school.

The fact that we have been preparing for this transition for a while does not make this much easier on {ahem} me.  I'm not so sure Emma understands all the changes so she doesn't seem as effected as I am!  Today was the beginning of the lasts.  The last speech session with the marvelous Kate at our house.  Oh, how we will miss her!  She is an amazing therapist and person and we were so lucky to have her work with Emma and us.  This afternoon will be the last session with our OT who, while she has only been with us for a few months, was great.  Tomorrow will be the last session with the always upbeat, full of energy, Jahna!  She has been with us for about 2.5 years as Emma's Early Childhood Educator and we loved her from the very first visit.  Emma especially liked that Jahna didn't focus too much on her motor control and really was there to play and teach and sometimes have a small snuggle at the end of the session.  We are so happy that such a wonderful group of people were brought into our lives and will be sad to see their visits end.

The firsts will start later in the week when (as long as our IEP is finalized!) Emma settles into her first classroom.  Her first day of school with a whole lot of firsts - working with her teachers, aides, and therapists.  Joining a classroom of kids her age.  Testing out new equipment.  And, eventually, leaving Mommy at the door while she is immersed in school.  I think a few tears will be shed when that happens and I'm betting they are not from Emma.

And then there are the unknowns.  I have a laundry list of unknowns but I don't want to focus on that right now.  I just want to enjoy my little one and trust that we'll work these out as they come along.  

School????

Today the girls and I had a super busy day.  There were 3 therapy appointments, one trip to the doctor, two trips to the pharmacy, one trip to the vet, two loads of laundry, well.....you get the idea.  After we dropped the prescription off at the pharmacy drive-thru we had about 10 minutes to do something and since it takes me that long to get the girls out of the car we took a short drive to look at the outside of the school where Emma might go in October.  

When we visited the school in the spring the pre-school was in trailers right near the building and we were told the trailers were going away and the class will be in the school this year.  When we drove up to the building the trailers were gone and there was a large dirt field with various debris where they sat.  The playground behind the school was sparse, overgrown and not very accessible (we were told in the fall that the PTA built the playground for the children since the school district doesn't fund it at all).  Basically, my heart sunk.  

Now, that said it is likely they are putting the finishing touches on the school before it starts and it will be cleaned-up by the start of school and certainly should be in better shape by October.  I've heard good things about the teachers in the pre-school program and they seemed very caring when we met them, so that is a positive for the program.  

It's just that this is not what I had in mind when sending my children to school.  I never thought they would be going to two different schools, two different curriculums, two different sets of teachers/administrators/staff - two different school families.  I never imagined that I'd have to learn all about IDEA, IEPs, special education, advocates and due process.  I'm sure none of us did.  

I love where Julia attends pre-school and said out loud I wish Emma was going to school with Julia.  I hadn't really realized I said that out loud until Julia said don't worry Mommy, she can come to school with me and she'll love it.  I had to tell her that she can't go to school there just yet and she asked me why.  I told her it's because Emma doesn't talk or walk yet and she replied when she gets older and does that stuff she'll come with me.  

I responded that yes, that is what I want.  When she gets older my wish is that both girls can go to the same school of our choosing - private or pubilc.  And Chris and I are doing everything we can to try and make that a reality.

But, in all honesty?  I wish they would attend the same school now.  If anyone in Delaware or Southeastern PA knows of inclusive local (private) pre-schools that are not priced at full-days 5 days/week, please let me know.  I had thoughts of a local church pre-school that would embrace Emma, but I'm finding it hard to find one.

Disability is Natural

Chris and I have been spending one weekend a month since February at the Partners in Policymaking meetings I discussed on this blog post. The experience and the knowledge gained at these meetings are life changing. Really. It's that powerful.

I will do some future posts on learnings from these monthly meetings that I want to share with everyone. Today, though, I want to focus a bit on what was discussed this month: Disability is Natural. Our guest speaker from Colorado, Kathie Snow, presented this subject from her experience as a parent with a son that has cerebral palsy and was educated in an inclusive environment. Please know that I couldn't possibly do her 3 hour presentation much justice at all in this brief blog post, so please check out her website found here that has loads of thought provoking articles and website resources to explore.

Mrs. Snow's presentation centered around the concept that there are two worlds: Disability World and Real World. The Real World is what typical children would do at any given age and she contrasts that to what children of the same age are doing and what is expected of them. She presents the concept that we need to give our disabled children the same opportunities as our typical children - to have time to make friends, be included in a typical classrooms, go to birthday parties (where therapists are not the only "friends" in attendance!), gain independence, held responsible for age-appropriate activities, etc. Basically, to be included in real world activities.

In contrast, Disability World is a place where people are judged by the medical diagnosis and everyone is working to "fix" it. The child gets the message that they are broken or something is wrong with them and often is hurts their self-esteem and results in learned helplessness. The thing is, people with disabilities don't need to be fixed. Disability is a natural part of the human experience and we should learn to embrace in general society people with disabilities.

People with disabilities don't need to be labelled and segregated out. Separate is NOT equal. But yet, children with disabilities are usually separated out into special education classes (and special sports teams such as Special Olympics, etc.) without even given the opportunity to be included in typical classrooms. They can only place out of special ed when it is deemed they are "normal enough." The caution from Kathie and many of the other speakers and those in the program that are disabled adults that went through the special ed system is that it is VERY EASY TO GET INTO the special ed system/classroom, but VERY, VERY DIFFICULT TO GET OUT of that classroom. It is much, much better to start out learning in a typical classroom with appropriate supports.

Consider that regardless of the large amount of time children spend in special ed (usually up to age 21) and the money spent by the government to support these programs, the unemployment rate of disabled children who go through the system is >75%! At the end of the special ed road, parents and educators are often working towards the goal of getting the child into a group home instead of their own apartment. In group homes people are put together with relative strangers they have to live with. They have goals written down that they need to meet - such as making your bed within 20 minutes of waking up, having food dishes washed and put away within 30 minutes of finishing meal, etc. Who the heck wants to live to this standard? I often go without making my bed at all and am just FINE with that!

I don't want to start down a path that considers it a success to have my child living with strangers not of her choosing, in a place with rules that I don't want to live with, and to a life of poverty living off social security disability insurance. And, so, what Kathie presented really got to me. I didn't get much sleep that night thinking of how this talk applied to our life and what is possible for Emma. Chris and I want Emma to live in the Real World and NOT in Disability World. So, now we have to figure out how to navigate the road of school starting in a few months and know that we have a strong voice in Emma's placement. And while we know that the path will be a continuous work in process, the one thing that is certain is that we will exercise our authority to deny many of the "assessments" that well-intentioned people want to give to our daughter that will result in more labels. This includes IQ tests. I can honestly say that I find NO value in IQ tests and will not agree to any such test for either of my children. Other than that, we still have a lot to figure out and I feel extremely lucky that we are participating in Partners in Policymaking while Emma is young.

School shopping

Today we looked at a potential pre-school for Emma. It is a public school and has a fantastic reputation. It is the second school we visited and we were very impressed. The first was a private school associated with the local university that also has a fantastic reputation (and a hefty price tag!) that we loved. It just seems so surreal to me that we are looking at schools already.

Our early intervention coordinator has been discussing Emma's transition into the school system since she was 3 months old. I had just as hard a time then as I do now thinking of my baby entering pre-school at age 3. That just seems very young to me for her to go out into the world without me. It took me longer than that to enroll Julia into pre-school and she only goes 2 days/week. The schools we toured for Emma are full time, 5 days/week!

I feet a bit off after each school visit. Like my world is spinning on the wrong axis. When I was pregnant I never thought I would be looking at the special education departments of schools - let alone looking for them when my child is only two! Nothing prepared me for this - not the countless hours spent with specialists and therapists, not learning the "diagnosis" doctors use with Emma, not the parents I talked to who have also agonized over the transition to school.

And so I tour the schools with a certain detachment. I ask the right questions, nod at the appropriate moments, take it all in - but in my mind it's as if I'm touring the school for someone else's child. And when the tour is over, I feel a bit dizzy from the change in the earth's rotation and just need a while to have things return back to normal.

I'm still not so sure about starting school so soon. I am not sure why the system is such that children place out of early intervention at age 3 instead of at kindergarten age and enter into the school system to receive their therapy. It's almost as if the choice to enroll in pre-school is taken away from the parents when the child needs the therapy services to progress and the therapy services are only available from the school - unless, of course, you have a very generous insurance policy that pays for private therapy or a huge trust fund to pay for it yourself.

What I am sure of is this: Emma will LOVE school. She will probably have a HUGE smile on her face each day when she sees all her friends in class. All the teachers, aides and staff will fall in love with Emma and fall victim to her incredible charm. That Chris and I will do whatever it takes to make sure she goes to the school that is best for her. That I will cry on her first day.

So, over the next six months we will continue to school shop. My world will continue to temporarily spin backwards after each visit. And we will eventually make a decision. But for now, I think I'll continue to enjoy our special time together before Emma ventures out into the world without me.