Tired of Being “That” Parent

Indulge me while I vent a little today.

It has been said “you need to know this is a mom who gets what she wants.” For the past week to ten days I have been a basket of conflicting emotions and I have conflicting emotions about that statement. I know it was well-intended. I know and understand special education law fairly well. I know my daughter. I have high expectations for her. I want to have high expectations for those who work with her in various arenas, but sometimes my expectations are way to high for “those” people. I like to think I advocate for what is best and appropriate for Rachel. It’s not about getting what I want.

I have some self-imposed blogging rules and without violating those, I cannot share the underlying source of my conflict today. In the past 10 days, Rachel has brought joy to hundreds of people who see her big smile and joyful heart singing in student choir in “big” church worship. I know this because they seek me out and tell me.

gf beautiful choir

She made 100 on both her biology cell test and her Romeo & Juliet Act II test. Her English teacher told me this about yesterday:

“I’m super proud of her. She blew everyone away when she talked about Romeo’s exile. Yep, she threw down the word exile. I love it!”

She exhibited great courage and skill in testifying before a packed room of Kansas State legislators and disability leaders last week. One piece of press coverage said, “On a day when Congressman Kevin Yoder testified before a Kansas House committee, it was a 15-year-old Olathe South High School freshman who stole the show.” You can see from the picture he didn’t seem to mind. He embraces Rachel’s abilities.

congressman looking on at testimony

She was offered a job as a Legislative Page. Rep. Erin Davis sees her abilities.

She spent hours practicing her dance steps outside of scheduled rehearsals for Christian Youth Theater’s upcoming production of Cinderella.  She is a Villager but you would think she was Cinderella. That’s Rachel.

More than anything she just wants to have friends and be a part of school, extra-curricular activities, church, theater, the community. She just wants to be like everyone else. She just wants to be Just Like You.

I think Jack Bauer said something like “The sad thing is that people like me have to exist.”  The sad thing is that I have to be “that” parent because more people don’t see Rachel and others with disabilities for their abilities. I often say the advocacy work I do is for Rachel and those who can’t, won’t or don’t. It is sad that I have to be “that” parent because of those who don’t or won’t. I’m leaving the can’t out on this one.

com appeal baby rachel 00

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5 comments

  1. I think I can sympathize. Without much detail, would you recommend “bucking” the system in order to get the best education for your child? With me trying to get into the system as a teacher, I fear rebuttal, but need a job. I also need my daughter to be taught for life, not just to the test. Suggestions?

    1. I don’t know your situation, but I believe you look at is what is best/appropriate for your child and advocate for that regardless of what a system says or does. I have friends who are teachers and were told they shouldn’t advocate for things for the child who had an IEP because of how it would be seen. Most ignored that and went on and everyone is better for it. For me it is not just a legal thing, it is a moral conviction. It is a heart issue and my philosophy.

  2. I’m not sure about the context of that statement, however, I believe you should take it as a compliment. No matter how people perceive your efforts, you are accomplishing awesome things–not just for Rachel, but for those students who will come after her. Teachers for whom you have high expectations, will become better educators because of it. We all need a little nudge now and then to get us out of our comfort zone.
    Thanks for all you do!

  3. Thank you for reading. I do think the comment was intended as a compliment. It is just the backdrop for what I am feeling. It just I don’t really care how I am perceived as long as it doesn’t get in the way of Rachel getting what is best/appropriate for her. Even those of us with thick skin get wounds and sores though. It has been 40 years ago IDEA was passed. I am so thankful for a law that gives us the rights we have. I am sad that we’ve not made it to a point where people include Rachel because they want to and not because I make them.

    1. I agree! With Blake approaching Kindergarten I have been very stressed out and worried. I have broken down to tears multiple times. I am well prepared to fight for him and his rights but what bothers me the most and makes me so sad is worrying that Blake might no be accepted with open arms like I hope and pray that he will be. I love that sweet boy with all my heart and I want everyone he meets to love and most of all appreciate him for who he is. We have never treated him any differently than our other children and I have never wanted anyone else to either. We have taught him to work hard and not give up. I want him to be challenged and taught how to deal with the hard situations in life. We learn best when pushed to our limits and made to work hard for our goals. If life were easy we would never learn anything new. Keep up the great work Momma!! You are a wonderful example to those who are following behind in your footsteps! You make me want to be a better advocate and keep the cycle going. I too hope that one day people will include our kids because they want to and not because they have to. That is all anyone wants, to be accepted and included.

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