Friday, April 12, 2013

Open letter to the Summit County ESC

The following is a letter I wrote to the leadership team of the Summit County ESC and the preschool program. As my regular readers are well aware, Casey and Connor started school for the first time in January, and you all know how thrilled we have been with the experience. The biggest part of the joy we feel is due to the excellent teachers and therapists the boys have been working with at school who help them to reach their full potential.

Miss Brooke and Miss Rachel have made school one of the boys' favorite places to go and have helped them make progress in areas that I had no clue how to even begin to explore with my guys. Their therapists are also wonderful. Their speech therapist is a huge part of the reason they finally said momma and Casey and Connor clearly love her. Their PT/OT teams are top notch and the guys have made huge strides in both gross and fine motor skills. I am absolutely thrilled.

When we were at the school yesterday (4/11/13) for our very first Parent Teacher conferences we were informed that Miss Brooke would likely not be their teacher next year as she was being moved to another position and we were also told that their ST was let go due to budget concerns. These are decisions I am absolutely devastated by and I have the distinct impression that their teachers feel the same way.

When we began the program, one of the things I was happiest about was that the boys would likely remain with the same group of children and the same teaching team for their entire time at school. I was ecstatic because Casey and Connor thrive in an environment that is predictable and comfortable. The fact that they are losing both their beloved teacher AND their speech therapist is just unacceptable to me. I am also VERY upset that the parents in the program were neither notified of potential changes nor given an opportunity to express concerns over the change. And so, as is my way, I made my own opportunity to let my thoughts be heard. If nothing else, the leadership of this program deserves to know that the teachers and therapists they have in place are heads above many others and that they have a chance to recognize these professionals for their dedication and hard work. That is also why I chose to share this letter here. Brooke and the boys ST deserve recognition for the difference they have made in our lives and in the lives of so many other children. Their love for their work and for their students is apparent in everything they do and say. Again, I feel this is a HUGE loss for my sweet boys.

Here is the letter. Thoughts and comments are always welcome. I would love to know what you would do or how you would help your children transition in this situation.

To whom it may concern,

I am the mother of Casey and Connor Wilkinson, 3 year old twins with Down syndrome who are in Brooke Gray's class at Newberry preschool. My boys began school in January of this year and it was a very difficult time for me as their mother. It was difficult both because it was the first time my sons had ever been away from me and also because they are non-verbal and therefore unable to communicate what happened during the day while we were apart. Sending the boys to school took a tremendous amount of trust in the teachers who would spend the days with my little miracle men. When I met Brooke and Rachel the first time I knew that Casey and Connor would be well cared for and well educated. Now, months later, we have just finished our very first parent teacher conferences and I am absolutely thrilled with the progress they have made. I have nothing but wonderful things to say about Miss Brooke and Miss Rachel. Not only have they helped bring out the best in my boys they have proven to me that we made the right decision in sending them to school. Most importantly to me, as their mother, I have 100% confidence that not only are my boys learning something new every single day, but they are also well-loved by their teachers and therapists.

I'd like to share a perfect example of how these teachers have gone above and beyond to make a nervous mom feel calm and heard. A few weeks ago, I approached Brooke about my bringing a special snack in on March 21st, the last day before Spring break and also, World Down syndrome day, which I asked if the class could celebrate with Casey and Connor. The answer I got was "Yes! Of course!" I expected only to bring in cookies in the Down syndrome awareness colors of blue and yellow. What I got was amazing beyond my wildest dreams. Brooke and Rachel decided that they would take the opportunity to really educate the other children and teachers about World Down syndrome day and to REALLY promote inclusion and acceptance of my sweet little men and all those with Down syndrome. As class projects they helped each child in the class tie dye a shirt, they made blue and yellow tissue paper flowers for each teacher and Rachel, during her own time, made 75 blue and yellow cake pops with World Down syndrome day tags to hand out to each student and teacher in the school! They also made blue and yellow hand print magnets with the DS awareness ribbon to hang on each door and for each child in the class to take home. When the morning of March 21st came I went in to drop the boys off and was absolutely blown away by all they did. Truth be told, I was a sobbing, utterly grateful mess.

They loaded the boys up in a wagon and pulled them to each class where the kids wished their schoolmates Happy Down Syndrome day. The memories that were made that morning will live with me for the rest of my life. When I share that story with other parents with children with Down syndrome they tell me they only WISH their kids had teachers who cared enough to do so much and who so willingly and exuberantly celebrated the joy of their child's special genetic makeup. Other parents in the class told me their kids wear the shirts they made all the time and talk about how much they loved that party. So, not only do Brooke and Rachel teach all the kids in the class what they have to teach them, they also go above and beyond to teach them lessons that everyone should learn- lessons such as we are all more alike than different, and friends are friends regardless of a diagnosis.

The point of this email is to really extend my gratitude for the program that is available in our community but also to send much needed praise and express my admiration for the outstanding teachers and therapists that are in place within the school in particular Brooke and Rachel. It should also be known that they boys' therapists at school are utterly outstanding. With the expertise from Pam McGill and her gentle guidance my boys have improved in their speech and communication with both of them saying momma for the very first time!!

I am first and foremost Casey and Connor's mother but I am also a Board Member for the Summit DD, a tireless advocate for those with Down syndrome, an active member of 2 Down syndrome parent advocacy groups, a weekly lecturer at Akron Children's hospital in the Medical Education department where I talk openly and honestly about Down syndrome with 3rd year medical students. I have twice presented a parent run information session for medical students at Case Western Reserve University's Genetic Anomaly Conference and I am an avid blogger, writing about our family and our experiences in the world of disabilities. I say all that so that you know what my background is and also so that you have a point of reference when I tell you I hear about many experiences from family members, self advocates and medical professionals and many of those experiences are not the stellar examples of professionalism and caring I have share with you today.

As I mentioned earlier, we had our very first parent teacher conferences today and when I inquired about what the plan was to be for next year, Brooke and Rachel hesitantly but honestly answered that their amazing team was likely going to be split up and a new teacher would be taking Brooke's place. I was also informed that Pam McGill was let go and the boys would be getting a new speech therapist next year. I was so sad that I cried. And, as I sit here writing this letter, the tears are once again burning in my eyes. I don't know if my letter can change anything but I had to take the time to express my heartfelt desire that Miss Brooke remain at Newberry and remain in the same classroom and with my boys. A new teacher and a new speech therapist is far too much change. Furthermore, to change so much of the routine and team that they are comfortable with would be utterly detrimental to my sons' progress. My sons thrive best in an environment they can count on and where they know what and who to expect. Casey and Connor have blossomed since starting preschool. They are comfortable and happy and I feel safe with the teachers they have. I know that they have the very best intentions for my sons and that Casey and Connor's success is as important to Brooke and Rachel as it is to my husband and me.

As a parent, a tax payer and a voter who has supported the school levies in this city I felt it was my duty to share my positive experience with you and it was my right to ask for what I feel is best for my children. I am their voice, their advocate and I know that I am not alone in my admiration for Brooke and Rachel. I also want you to know that this letter will be shared as an open letter with a brief introduction on my blog, The 3rd 21st and on my sons' advocacy page on Facebook, as I strive to share all we are going through with my readers. You can view the Facebook page at and the blog at This is solely to share with other parents how positive our school experience has been and also to share the sadness we feel at potentially losing such an outstanding educator.

Thank you for your time and consideration in this matter. I look forward to any response you can provide.

Meghan M. Wilkinson

God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome doesn't TAKE a special family, it MAKES a special family....

Tuesday, April 9, 2013

Hey! Guess what! I'm not perfect. And it's ok!

There was a brief period of time recently when I debated quitting my blog. I felt  like I just wasn't making the time to do it justice and I feel like I am just halfheartedly trying to keep up. Then I really started thinking about deleting the whole thing. I really needed to explore the reason behind wanting to quit. Was it HONESTLY because I don't have the time? Certainly I am busy but too busy to sit for 20 minutes and bang out a few hundred words to share the joys and trials of this magical ride I am on with people all over the world- some of whom may be searching for just the tiniest bit of comfort that their newly diagnosed baby will one day be ok? Then I felt selfish. And lazy. And like a failure. My goodness! I am really harsh with myself sometimes. And thus this post.

I know I can not be the only mom in the world that feels like life is full of "Should do's" "Have To's" "Want To's" and "Not a chance that will happens". I'm good with the have to's- I have to do laundry and cook because I have a family and it is my job to care for them- but those things also fall under the want to's because I WANT TO be a good wife and mother and I WANT to care for my husband and our kids.  I have even gotten to a point where I accept the "Not a chance that will happens" because I have come to terms with the fact I am NOT a superhero. There is no way I can keep my house spotless and well organized- I have 3 small tornadoes that make short work of my cleaning. I CAN keep things neat but not perfect. Well, I could keep things perfectly clean but other things would suffer- like playing outside with my kids. I have to ask myself- what matters more? A shiny, spotless floor or that one day my kids can say, "Hey mom, remember when we painted the porch with water and paintbrushes and then we took off our shoes and socks and splashed in the water? That was fun!" I have learned the balancing act to some extent.

But then there are the should do's. Of all the things in my life that get to me it's the should do's. Things I should do but typically don't and feel ridiculously guilty about. I should work out everyday. I should write for the blog at least twice a week. I should clean the basement. I should find time to volunteer more. I should really make plans for the summer so I can make sure the boys are developing in the areas where they are behind. I should go to play dates. I should just quit sucking at things. I should dedicate myself to my home business. And on. And on. And on. And at the end of the day when I am trying to go to sleep all I find myself thinking of is all that I SHOULD HAVE gotten accomplished and how guilty I feel for failing.

Why do I do this to myself? Why do any of us? As I stated earlier- I KNOW I am not the only one who berates herself for not being that mom. The one who always seems to be on top of her game. The one who manages the household budget, Girl Scout troops, bake sales and is active in her church, at her kids schools and in her community. The one who always looks great, is running off to Zumba, while selling record setting amounts of Tastefully Simple or Partylite candles (or in my case ACE and Saba products) and somehow she is always on time and never looks frazzled. Always a smile on her face, never yelling at her perfectly mannered children. And on top of it all she has amazing dates with her husband and still somehow manages to find time for herself to craft and write a blog with thousands of followers.

And then it hit me! That mom doesn't actually exist! You may be thinking "Wait! What? This woman is crazy!" But I'm not and I am right. There are NO mothers out there who can do EVERYTHING. We all have our strengths and weaknesses. Every mom has moments where her patience is tested and she has days where she just feels like a failure. We will all have the "time out in the middle of the zoo" days. That's why they make wine. In all seriousness, perfection is in the eye of the beholder. The mom I look at with envy and awe is just as screwy as I am and has just as many moments of self doubt and thoughts of her own incompetence. To all the people who have called me a supermom- haha! Fooled ya!

So, realizing I am not the only who falls short of their ideas of what makes a good mom I now know as long as I am trying- moving forward and doing my best I don't have to do everything! I just have to do what I can. WHAT A BREAKTHROUGH!!!! I don't have to be PERFECT. I just have to try my best and love my kids and husband and remember to be thankful for all that I have. I can handle that.

I even made an e-card for this post! This is serious!

So, in light of this recent revelation I have decided to keep my blog and write when I can. I'll get here when I can and share my ramblings and smiles and lots of pictures of the kids who inspire me to try to be the best mom possible. 

AND I will encourage other moms to realize their value and their contributions to their households, their kids and the larger world there. So, great job moms! If you got up today and hugged yoiur kids and made them feel important and worthwhile you are already a success. If you didn't do that yet, the day is long- take the next chance you get to love your kids and make them realize you try your best because they matter.

Oh, yeah- be nice to yourself, too. You have a big job to do and you are doing great.