Martin Luther King, Jr. Lessons

Emma is a Girl Scout this year - well, technically she is a Brownie. It's her first year of scouting and so far it is a huge hit with her! She loves going to the meetings 2x/month. The meetings take place at her school and there are about 20 girls from her grade in her troop. Chris or I always join Emma for the meeting so that we can help her fully participate but often her fellow scouts take over and include Emma without needing (or wanting) our help.

I wasn't sure how scouting would go for Emma. It's at night after a long day at school and she is usually exhausted at night. I wasn't sure how she would participate in the circle time, crafts and activities with her troop but knew we could modify things on the fly. Since she expressed a strong interest to join we decided to give it a go and I'm so glad we did!

Our last meeting's topics of discussion were the upcoming Girl Scout Cookie Sale (if you need a hook up with cookies or want to donate money to send cookies to our deployed troops, let us know!) and Martin Luther King, Jr. When the leader asked the girls what they knew about Martin Luther King, Jr. it was great to hear that they knew so much about him and others involved in the Civil Rights Movement. Our activity that night was to draw on one sheet of paper Martin Luther King, Jr.'s dream and then on another sheet of paper the girls were to draw their dream. During the activity a snack of Pirate Booty was served.

As is typical, Emma's friends sat by her side and offered to help her draw but Emma wasn't so interested. When I asked her if she had a dream she said yes. When I asked her if it had to do with school, she said no. Did it have to do with play? No. Etc, etc. Finally I asked her did it have to do with food? Yes. Her dream was to have me feed her more Pirate Booty. So funny - so Emma. Obviously, her dream was easy to make come true and it happened immediately.

While we were at our tables I shared with the girls how thankful I am for Martin Luther King, Jr. not only because I love that it ended segregation, but also that the Civil Rights Movement paved the way for the disability rights movement. Many of the protections passed as part of the Americans with Disabilities Act used the Civil Rights Laws as a framework. Until the ADA was passed on July 26, 1990 public accommodations for those with disabilities was not required. I can't imagine how our life would be impacted if we didn't have access to ramps or handicapped bathrooms at public places. Just 25 years ago these things were not commonplace. Today, we do encounter our fair share of challenges navigating our environment with wheels and that is after the ADA has been around for 25 years.

Martin Luther King, Jr.'s dream matters. His dream helped shape the America that we live in today and for that I will forever be grateful.

If I was drawing my dream on the Girl Scout sheets last week, it would be that people with physical disabilities would be able to go anywhere - including places not mandated by the ADA - without worrying that they might not have "wheeled" access. That our worries would no longer be that there might not be a ramp, parking or a large enough handicapped bathroom (no, they are not all created equal in size!), but that our biggest worries would be that we might not have packed enough sunscreen or snacks.

Julia is on roller skates pushing Emma, who is also on roller skates and standing in her KidWalk gait trainer, around the roller skating rink at Emma's birthday party.

Preschool Graduate

Emma's preschool follows a 12 month schedule.  They have the same number of school days as other schools but they spread it out over an entire year.  I didn't think we would like this schedule at first but we LOVE it!  I sure wish other schools would adopt it.  There is still a long summer break and several week long breaks through the year.  I think it really keeps the children (and parents, teachers, therapists, etc.!) from burning out and doesn't require all the review in the beginning of the year.

Her school year is now coming to a close and today her class had an end of year ice cream party.  There were several students graduating to kindergarten and they wore caps and gowns and there was a little ceremony.  It was beyond cute!!!!  I teared up seeing Emma in her outfit walking up to get her "diploma."  She stood so tall, so proud.  She looks so ready to take on the challenge of kindergarten.

She has grown in so many ways during her two years at the preschool and has had an incredible team encouraging her in her daily endeavors.  She is loved by her classmates and her team of teachers and therapists.  It was at this school that Emma found her voice (ECO2 device) and met so many of her academic and developmental goals.  It prepared her to take on the world of kindergarten in a way that I couldn't have imagined when she started school.

Emma's friend at school wanted to dance with her to the music so he took her hands and helped her move to the music.  It was completely unscripted and heartwarming. 

Emma loves an audience and attention.  When her teacher put on the graduation music and it was her time to stroll down the aisle she strolled just long enough to get to see the crowd of people and then she stopped.  Typical Emma!  After a bit of encouragement she continued on to her teacher to get her diploma.  I caught it on video and can't stop watching it.  My girl walked down the "aisle" and received her preschool diploma.  What a milestone for her!



Her class performed a song for everyone.  It was about stars shining and growing.  Emma doesn't really sing so her speech therapist set up a touch lamp for her to turn on and off at certain times during the song.  It was a wonderful way for her to participate!

There was a video slideshow of their year and it was so wonderful to watch.  I never tire of the slideshows - it's such a nice glimpse into the magic that occurs during the school year that we as parents don't typically get to see.

So many people came up to us and told us how much they loved seeing Emma each day.  She always greeted everyone with a huge smile and brightened their day.  She will most definitely be missed, but it's time for her to share her zeal for life with a whole new group of people.  Although Emma has a lot to learn in her school adventures that have only just begun, it is evident to so many of us that Emma is so much more a teacher than a student.  She teaches people to laugh with great abandon on a very frequent basis, to smile in the face of adversity and to inspire greatness in others.

The world needs the brightness Emma gives it and we are all the better for having spent time in her own brand of sunshine.  Congratulations our sweet Emma Bean!!!!

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.

Wondering

When you have a child with multiple challenges it's easy to wonder if the decisions you make are the right ones.  And as Mom, I put a lot of pressure on myself to keep up with the various therapies, nutrition, equipment, etc.  Since we are living in the information age you can pretty much bet that if you name it, there is information about it and Goggle is ready to provide various links to learn more about it.

Because we all want the best for our children, we often try and leave no stone unturned when it comes to knowing what is available to our children.  We usually know more options out there than our doctors because we've forged a network with other parents across the nation and the world to learn more about what we can do to help our child achieve their desires.  I say their desires because I've found that - overwhelmingly! - us parents are taking the lead from our children on what they want to do.  For example, Emma is totally into moving these days and by gosh we are going to do everything possible to help her realize her goal of easier, quicker movement.

What is hard, though, is deciding which path to take to help them achieve their goals and staying the course. Because it's easy to find success stories about most of the therapy and equipment options, it's easy to second guess your treatment decision if your child isn't making as many gains as quickly as you hoped.

Emma is amazing us with how much she is moving and doing other new things recently.  She is getting so quick at commando crawling, sitting with minimal assistance on good days, walking at home in her gait trainer, sometimes vocalizing Yeah when she wants something, opening her hands more and attempting to cross midline with her hands more often, sometimes playing independently with her toys, demonstrating her understanding of some new concepts like same and different in addition to just identifying objects by name.  This amazing progress happened within the last year, and most of it within the last 6 months.  To say that Chris and I are thrilled to see all her hard work paying off would be an understatement.  To say that Emma has worked tirelessly (of course she has had an incredible amount of fun and adventure in her short life, too!) to get to this point would also be an understatement.

So, what is the point of this post?  I'll get to that, but first I have to tell you about a little guy that Emma has known for the last 2 years.  He was born very early and had a lot of challenges.  He was further behind on his milestones than Emma when they started out at PT together, but that didn't matter and the become fast friends.  He had very similar intervention to Emma.  His treatment was at the same hospital with many of the same therapists and the same equipment.  But today he is not as delayed in his milestones.  We were happy to see him the other day walking with a walker (not a gait trainer, but the kind like the elderly use) and talking to everyone, blowing kisses and generally looking amazing!  It was so nice to see how good he is doing - he seems close to catching up with his adjusted age!

Running into this little guy started me thinking.  The results of intervention with him and Emma are very different.  If we did not know him and that he had the same intervention as Emma, I might have asked what type of therapy he had and consider trying it for Emma.  I might have wondered if Emma could have achieved her goals quicker if she had the same intervention as this little guy.  And I would not have known that the intervention was essentially the same as Emma but with a varied outcome.

I also think that if we had changed Emma's treatment in the last 6 months and started seeing all the great things she is doing now we might have attributed it to the change in treatment instead of that all her hard work and intervention to date is paying off for her.

While I don't think I will stop wondering if Emma would benefit from other treatments, it's more concrete for me that there is a big benefit in deciding the best course of action and then staying the course.  I also believe that we should adjust the course if it isn't right for our child, doesn't fit into our lifestyle, or is otherwise detracting from Emma's ability to experience life as a little girl instead of a patient.  Because, truly, life for little girls should be about play dates, fun at the park, day trips to the beach, squealing with delight from amusement park rides, playing with dolls and dressing up as a princess, and lazy days around the house.  And not all about therapy or doctor appointments if they can be helped.

I feel like this post is wandering a bit because what is so clear in my mind is so hard for me to put into words.  But, what I guess it comes down to is that I'm glad our encounter with the little guy happened because it made me more aware of my wonderings and helped me to put them into better perspective.  

***Note:  When selecting photos for this post I noticed that I have very few photos of Emma in therapy sessions but I have loads of her out and about enjoying life.  I'm taking that as a sign that we actually are giving her a pretty "normal" childhood.  And that I need to take a few photos of her in therapy so I can go back to them someday when I'm looking to remember when.....

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.

Uplifting Song

I've had a bit of an internal feud going on with God lately, and, well, a very strong mother of another child with congenital CMV posted this song to Facebook and I fell in love with it immediately. I guess we all need a reminder sometimes that we are not alone.

Your Hands by JJ Heller

I have unanswered prayers

I have trouble I wish wasn't there

And I have asked a thousand ways

That You would take my pain away

That You would take my pain away

I am trying to understand

How to walk this weary land

Make straight the paths that crookedly lie

Oh Lord, before these feet of mine

Oh Lord, before these feet of mine

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

When You walked upon the Earth

You healed the broken, lost, and hurt

I know You hate to see me cry

One day You will set all things right

Yea, one day You will set all things right

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

Your hands

Your hands that shape the world

Are holding me, they hold me still

Your hands that shape the world

Are holding me, they hold me still

When my world is shaking

Heaven stands

When my heart is breaking

I never leave You when...

When my world is shaking

Heaven stands

When my heart is breaking

I never leave...

I never leave Your hands

The I word - Insurance!

Warning! This post is just one big rant.

I've been going through all our health insurance options lately. We have to choose Cobra or go under Chris' health plan. It's caused us a great bit of anxiety as medical costs are pretty crazy around here and are about to even get crazier. The problem is that neither of the options really fit our long-term needs. Cobra is super expensive, coverage is lower than the previous year's plan and it's only good for another year. The only thing attractive about Cobra vs. Chris' plan is that it does cover some therapy which would be handy from Oct - Dec. of this year when Emma ages out of the early intervention (EI) birth to age 3 plan. In EI all her therapies are covered by either insurance, the state, or a combination of both until she is 3. After that, Emma will get the services in the school system and I am skeptical that she will continue to progress as steadily as she is without some additional focused therapy.

As for Chris' plan, the downside is that it DOESN'T COVER ANY therapy for chronic conditions such as CP and has NO hearing coverage (don't even get me started on this one - when did hearing become a luxury????). Previously I would never have though twice about these exclusions, but Emma has CP and is deaf so you can guess that these exclusions just jumped off the page at me! Thank goodness that Emma has a secondary insurance for her disabilities that I am told will cover her ongoing hearing costs. As for the therapy, I have no idea what will happen come Oct. 1st. We might be able to successfully advocate for some private therapy coverage for Emma. I'm not sure how that will all work out, but I have a feeling it will. God has seen us through so much the past two years and each and every time I've gotten overwhelmed by the insurance stuff He has given us what we needed. So, I need to keep the faith that He will get us through whatever comes up.

The thing is, I know we have it better than many families in a similar situation. We live in a state that offers disability insurance for qualified children. In our area DE and PA offer this, MD and NJ do not and I have not idea how parents in these states pay for all the medical costs. We also were a bit older when we had our children so we already have a house and some savings, which many young couples starting off do not have. Not to mention that we are both well educated, speak English as our native language and have a good support network - all of which is very helpful in navigating the "system" and figuring our the insurance coverage when the coverage documents are written like an extended warranty sales pitch that covers everything until it's actually broken and then they bring out the fine print!

We finally decided on the best plan for us, but I still have some lingering insurance anxiety. Why? Do you know the cost to raise a child with multiple disabilities? Let me sum it up in one word: Staggering!

I've been following the health care reform in Washington as closely as my time permits. I've called all my representatives in D.C. multiple times and sent several email letters to each of them. I've sat in on town hall phone meetings on health reform. I even sent a message to President Obama directly. I've listened to many of the NPR discussions on this topic. I've never been this active on any political issue before and I believe that we have to take a stand as a nation and say enough is enough with our health care system and fix it.

Before Emma I might have been content to sit on the sidelines a bit more and I now think - shame on me! Why should I leave it to other people to decide how to change the system without providing my position? Our elderly know how to advocate for themselves, but who will advocate for our children? So many parents with children with special needs - that need to advocate for the health care reform - just don't have any energy left at the end of the day.

And who can make heads or tails of what the reform proposals are anyway? Not me. It seems to change as quickly as the wind changes direction. The one thing that is clear, though, is that something will change. And I hope that the changes will decrease my anxiety over health insurance for Emma! I certainly have given at least my two cents worth to my representatives in D.C. to try and turn my hope into a reality. Have you?

Play Dates

The girls had some friends come over for a play date on Tuesday morning. I am trying to find more time for Emma to play with children instead of always playing with adults. Emma just LOVES to be around kids and she loved the play date - she spent the majority of the time just laughing at all the things the girls were doing!

Our friends arrived just as Emma was finishing up her session with her Early Childhood Educator. Emma was in her stander and while I was taking her out my friend and Emma's therapist were remarking on how well Emma is doing. Her therapist even said that she doesn't really think of Emma as special needs and I agreed with her.

Emma is just blowing us away with how grown up she is getting and how much she is doing. I found myself realizing how far I've come in the past year when I think that my 2 year old child who isn't yet independently sitting, standing, walking, talking, pointing, eating, etc. is acting like a typical 2 year old. The thing is, Emma loves to play with kids, paint, color, read, cook, do puzzles - pretty much most things a typical 2 year old likes to do. She just needs a lot of extra help to do it. I think it is because she needs so much help that she has learned and perfected the art of being INCREDIBLY CHARMING. And Emma has taught me that being charming can get you very far in life.

After all, wouldn't you help her? Just look at this face - Emma finds delight in almost everything and she's not afraid to shine her light on all those who help her. What an amazing little girl!

Why I Blog

I originally started this blog as a way to keep track of what is happening in our lives. I've always wanted to keep a journal and have started and stopped over the years but never really have the time to write consistently. I type much faster than I write and I thought of keeping an electronic journal but only gave that a half-hearted effort. The idea of an online blog appealed to me so that I could journal about the girls' milestones, easily include digital photos and video, and keep family and friends updated on Emma's progress.

I became familiar with blogger by visiting the blogs of (mostly) Moms of special needs children. I visited some blogs so frequently that I started to "follow" them so that I could be informed of new posts - you can see the blogs I follow in the panel to the right. In reading these blogs I met kindred spirits, found inspiration, and learned a lot about alternative medicine options. And, to be honest, in the beginning I found that reading the blogs was sort of a "Chicken Soup" for my soul.

I started leaving comments with my online community and people found their way over here to check out my blog. I'm now at the point where I want to help pay it forward - to provide information learned on our journey that others might find helpful, so I created posts on craniosacral therapy, therapeutic riding, and equipment. These posts were meant to keep family and friends updated and also to provide information to other parents in a similar situation. I will also contribute to Tara's Kidz blog as a way to share our journey with more parents and also spread the word on preventing CMV birth related defects to a larger audience.

As I expand the focus of this blog you might notice more posts meant to share with my online community included among all our family happenings. I think you'll find them a nice complement to my blog.

Comfort in a Prayer

I have an on-again, off-again relationship with my prayer books. There are certain prayers I invoke all the time, but others I dig out based on where I'm at in life. Recently, I dug out my St. Elizabeth Ann Seton prayer book and, instead of mindlessly turning to the page I always read, I flipped through the book and decided to read a couple of new prayers.

I found the Serenity Prayer and read it several times. I had always known the first verse in the prayer, but didn't know that there were two more verses to it - what a well kept secret! In case you don't know the full prayer, I've typed it out below.

Serenity Prayer

God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

Help me to live one day at a time, enjoying one moment at a time. Help me to accept hardships as the pathway to peace, taking as Your Son did this world as it is, not as I would have it.

Let me trust that You will make all things right if I surrender to Your will. May I be reasonably happy in this life and supremely happy with You forever in the next. Amen.

Since I've read it, I can't stop thinking of the third verse. Specifically the part about being reasonably happy in this life and that it does not say supremely happy in this life. And, I think, YES, I am reasonably happy in this life and I find a lot of comfort in this thought.

Acceptance

I've been thinking a lot about acceptance. About it in general and about it specifically in terms of Emma. Having children changes your life. Having a special needs child changes you.

I had never thought too much about children with special needs before Emma other than the standard pregnancy worries and the thoughts/prayers I would say for others with special needs. I didn't go into any nurturing profession like nursing or teaching that would expose me to the real world of raising a special needs child. So, when I finally realized that the road ahead for Emma and our family was more than we originally thought, I have to say that I felt unprepared.

When I think of my precious little girl with the easy smile, the glint in her eyes, the giggle that makes you melt, I think that my life couldn't get any better. That our family is perfect and just as it was meant to be. But, when I think of all the therapies my baby has every week just to try and get her muscles to move or enable her to communicate to reduce frustration, I want to cry for all the play dates, park outings and field trips she is missing.

Recently I've read some blog posts from parents who are clearly at peace with their child's diagnosis. I would love to say that I am there, but I am not. I struggle, some days more than others, to enjoy the moment rather than worrying about the future. I struggle with the stress of managing the health insurance struggles, the appointments, feeding Emma (oh, the feeding, that deserves a post all to itself!), feeling like we're not doing enough, feeling like we're doing too much, wondering what effect this will all have on Julia and Emma later in life, etc. You get the point here.

Lately I've been making an effort to spend most of my time living in the moment and accepting that we are doing the best that we can each day to nurture our girls to become strong women. I think of all the time we spend together as a family and all the adventures we undertake together. I think that I've learned more in the last 21 months than I learned in all of my 35 years and that I now know the true meaning of unconditional love. And I know that acceptance will come in it's own time. Just like I know that Emma will exceed all of our expectations...in her own time.