To my daughter, 

March 18, 2015 § Leave a comment

The day we received  your diagnosis I told myself and everyone around us that “this is not an excuse for her!”  I told them that the expectations for you will be the same as those we had for your brother and we would expect you to do your best to reach them.

And you have.

You are an amazing girl who quite frankly doesn’t get enough credit.  

After this past surgery you proved to me how amazingly strong you are. Watching you hauled out of bed and forced to stand for x-Rays 2 days after having your spine fused showed me what a warrior you are.  You didn’t cry or complain, not even a whimper! Then, several minutes later, while waiting in the hallway in your bed to be wheeled back to your room, you complimented a woman on her makeup.  I can’t imagine the physical pain you were in but yet you forced a smile and a compliment to make someone else feel good.  You are amazing!

It has been quite a journey through recovery and you have taken it all in stride. Only 6 short weeks later you are back to riding the bus and making it through a full day of school.

It’s very easy for others to forget what you just endured – because you seem absolutely fine.   So when I got a call the past two days from the school that you were “short” with your  words – I reminded them that your still healing and might need them to be more understanding and flexible.  And then, when I got an email yesterday that the same thing had occured – I let it go.

When your cried to me the past two nights about this I didn’t  let you see my heart break. I continued on with my no excuses rule, same standards, blah blah blah….  I never told you I asked the school to be more understanding, instead told you that you were wrong, you can’t act like, blah, blah, blah! 

The truth is I spent most of the night awake thinking about this.  

When they contacted me today for the third day in a row and I saw the phone number on the caller ID my blood began to boil.  Instead they were calling to tell me some kids in the cafeteria made you cry.  

That was my breaking point, I hung up the phone and stood in the kitchen and cried.  I’m still crying as I type.  My heart breaks for you.  How can anyone not see how strong, brave, kind and amazing you are?  

My sweet girl, you are a warrior! If you are “short” with your words – so be it.  I would be too if I was enduring what you’ve been going through.  Sometimes you deserve an excuse.  You deserve to hear that you have been brave.  You deserve to hear that you are a trooper. 

On a regular day you have to work twice as hard as eveyone else just to get through the day, and even when your not 6 weeks post-op there is an overwhelming amount of doctors appointments.  So yeah – guess what?  Some days  you deserve to be cut some slack. 

I can’t wait to see you when you get home today.  I can’t wait to wrap my arms around you and tell you it will all be ok.  

I will remind myself in the future that what you have to go through is far different and often much harder than what most kids your age do and that sometimes you need a break, an excuse and for me to let you know that I understand.

Thank you for being the warrior you are. Thank you for always trying your hardest. Thank you for always having a smile on your face and giving the worlds best hugs. Thank you my sweet girl for being exactly who you are and allowing me the honor of being your mom.  

Love,

Mom

credit where credit is due 

March 4, 2015 § Leave a comment

So many post that I have written talk about the short comings of the experience with my daughter within special education.  Today I can say I need to give credit where credit is due.

We are one month post surgery for my daughter (spinal fusion) and she began the journey of getting back to school today.  She still tires very easily after such a big surgery so we are starting small and building her up gradually. Today she went for two hours hopefully a bit longer by Friday.

I have to say the school has handled this with great flexibility and has listened to my concerns and taken them seriously.  

One teacher has gone out of her way to assign “body guards”‘ to help my daughter feel safe in the hallway and another student to carry her books.  My daughter said “I felt like royalty!”

The children decorated her locker and made her feel warm and welcomed. I believe they did it without being told and just organized it on their own, either way what a beautiful gesture of love and friendship. 

When you are 11 and out of school for a month it feels like an eternity.

Today I would just like to say I am grateful for a good first day back.  I am grateful for the school understanding the gravity of the surgery she had done, saying flexible and accommodating her appropriately! 

from fear to acceptance

March 3, 2015 § 1 Comment

The challenge write a letter to the disability that your loved ones has…..

Dear Williams Syndrome,

At the time you entered our lives we were shocked  especially since we never knew you existed. The statistics at that time were 1 in 20,000.   We felt like we hit some bizzare lottery.  (You taught me odds mean nothing).

We learned simple ways to explain your existence and announce your arrival.  People sent us mass cards and cards that said “I’m sorry for your loss” as if our daughter had died. (You taught me to bite my tounge, look at people’s intentions instead of their words or actions.) 

I didn’t answer the phone for the first few months.  I avoided the pity.  I began to create a new circle of people I talked to, mostly therapists, doctors and early intervention specialists.  (You made me embrace you and you made me learn a whole new medical language.)

She began to grow alongside her brother.  I tried to treat them the same. It helped.  I never wanted her to believe her disability was an excuse for lesser standards.  (You pushed me to push her.)

School started and I learned quickly the pain of “the comparison game.”  (Comparing what she could do and what typical peers could do.) This went on for years. I worried incessantly all day when she was at school.  Until I finally went back to work which helped tremendously. (You taught me about anxiety and I found the skills to deal with it.)

Years passed until one day I met an amazing woman who taught me to allow her to “rock her disability”.  I began meeting adults with the same disability and saw the beauty in the future. (You taught me to capitalize on what is good and say the heck with the rest.)

Throughout this journey I blogged with a network of mothers, also members of the then 1 in 20,000 club. We had found each other via the Internet. We bonded. (You introduced me to some of my very best friends and you taught me to find my voice through writing.)

At work every step I took I had the family in mind not just the child.  I aimed to serve them all.  An IEP has to represent the needs of the individual but focus on the vision of the parents. I was able to tell parents that I understood their fear, pain and anxiety.  I try always to be there  for them as much as I am there for their child. (You helped me be a better special educator.)

Fighting for her became second nature. I never knew I was capable of having such a presence in a meeting.  I had to find my strongest sense of self. (You taught me to be strong.)

When other family challenges came that were more pressing or when her medical needs outweighed everything else.  I learned to let go, I learned what was important and I learned to accept help from others. (You made me a better person.)

It’s amazing that over the years I truly did move through the stages of grief. I am only realizing this now as I type.  It never ends, I circle back some times and have myself a glass of wine and a pity party now and then. But mostly I have found acceptance and beyond that I have found a joyous life with my girl who is amazing and my family who has grown with me.  We are an amazing group.  I am so proud of the love and laughter in my house.  In the end that’s all I truly care about!

So thank you Williams Syndrome for making me 1 in 20,000 (or whatever the odds are recalculated to be now).  I have truly hit the lottery of love and a blessed life. 

The B*tch

March 1, 2015 § 3 Comments

My son has been in the same public school as my daughter with the same teachers all along.  They are a few years apart but currently in the same building. My son generally flies under the radar and my daughter, well, she is going to make sure you know who she is.   Recently I realized many people didn’t known they were siblings.  They were surprised I was his mother too!

You see with my son I’ve never had to be “that mom”.  The mom who calls the school and you can hear the secretary roll her eyes over the phone, the mom who is dreaded at IEP meetings, the mom who asks questions and expects to see data and proof that support the answers people give.  –  I am in their eyes “a b*tch.”

I said it!

I mean, I know the school personnel is thinking it but let’s take the pressure off and put it out there – Dear School – I know you think I’m a b*tch and a pain in the a$$. 

You didn’t know that I even existed when you had my neurotypical son as a student did you ? But, I’ve been there all along!

I think many of us who have to fight for our children feel this way.  We feel anxious because our reputation proceeds us. Moving from year to year in school the teachers are warned “ugh watch out for her!”

I must wonder if these same school personnel ever give pause to figure out why I am and other special needs parents are perceived this way?  I wonder if they realize it comes from years of having to beg for everything our child has in school.  

I wonder if they realize when I walk into an IEP meeting that I walk in with 11 years of baggage and “fighting” behind me.  

That being said each year I try to start fresh, I give everyone the benefit of the doubt.  I have hope that they will fall in love with my daughter and although she will cause them extra work they will see she is worth it!  I trust them to do their job!

But it seems every year (with an exception of one or two) no one wants to do their job, no one wants to put in the extra effort – teachers want to follow what they see as important for my child instead of what is in her IEP. 

This leaves me to explain, to educate, to ask questions and to advocate and for some reason when parents do this they are considered a pain in the a$$. 

As an educator I make these parents, parents like myself, the ones who have been hurt and burned a top priority!  I spend that extra time, I try to help restore trust, I offer data before that have to come looking for it.  I send home notes after each work session.  I don’t hesitate to hug them and to tell them to call me.  I tell them I would fight hard too if it was my child and I understand.  

When we receive a child into our lives through a school program we really recieve so much more.  We recieve their past, present and future. We recieve their family and community.  We are only one facet in a huge picture of the larger scheme of life.   This is our chance as educators to be difference makers, to reach trust with the school through transparency and communication.  To build real relationships by opening up our hearts and to know and understand that we too would not hesitate to fight hard for our children even if it meant being labeled the b*tch!



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