An open call invitation
A while back, a letter came in the mail from National American Miss Pageant inviting my girls to Open Call. It NEVER crossed my mind this experience would be for Lily only. Harper may be different in her physical abilities but that does not mean she cannot do something she sets her mind to. It simply means she does it differently.
I did some research on the legitimacy of the pageant and discovered it was about helping young girls become well-rounded young women who are comfortable with being who they are. It was not about outer beauty but rather about a girl’s inner spirit.
I called my girls together and showed them the pageant video on the NAMISS website. Then I asked them both if they “would like to be on stage in a pretty dress with a bunch of girls their age.” Lily said, “Oh, no…NO!” while Harper’s response was an enthusiastic head nod indicating “Yes!”
Harper’s requirements the same as other participants
I made some phone calls and signed Harper up for Open Call where she went to qualify like all the other pageant participants were required to do. During the entry process we strongly expressed that Harper’s desire was not to stand out in an event not suited for her but rather to fit in with all the other girls as a typical participant. NAMISS did a fabulous job of including Harper; meeting her needs yet keeping consistency in all areas for all the participants. Harper’s requirements were the same as the other girls; the only difference was her interview questions were “yes/no”. We were very excited to see another NAMISS Princess Division participant with a communication device similar to Harper’s.
The event was amazing and Harper won way more than expected. She made lots of friends and it did my heart good to see her interact with all of them. Even more exciting was to see the desire of the other children to interact with Harper.
I learned a lot from Harper’s pageant experience.
1. My special needs child is okay with who she is.
She needs me to help her, not feel sorry for her. Which means that I need to be okay with where she is and who my child is. Yes it was emotional for me as a mom to hear Harper’s device speaking what I wish she could have been saying with her own voice. But just because she cannot speak does not mean she doesn’t have things she wants to say.
How do I know what Harper wants to say? I talk to her and then pause, allowing time for any response from her. I pay close attention to details. It started as a raise of an eye brow, a sideways glance, a look away from my direction, a slight lip curl. Eventually as her skill developed the small details turned into a head nod “Yes”, and a head shake “No.” The movements are not drastic but they are clear. And Harper is strong-willed enough that if I get the answer wrong she most certainly lets me know I misunderstood!
Treat people always as though they understand everything you say and they will surprise you with their abilities.
2. Stop being defensive!
During this pageant experience my understanding was reinforced that I must continue to work to turn my perception of a negative into a positive. How else are we supposed to influence the world? There are no offensive questions, only defensive parents.
I don’t want to be that parent! My child doesn’t want that. If I am not in the mood to talk about my child’s condition then I do not wear an awareness t-shirt out in public that day. Another parent could choose to cover up the tattoo they got to advocate for their child and their condition if they don’t want to answer questions that day. It’s a daily choice sometimes but it’s important to not be defensive!
During the pageant Harper’s nurse went downstairs to the Coffee Shop while I stayed with Harper and helped “Miss Princess” relax before the next rehearsal. The conversation that Harper’s nurse had with a mom in line saddened me. The other moms were never afraid to approach and ask her questions but were hesitant to approach me.
Harper’s nurse reassured them all that I was open about everything and there was no offensive question that could be asked. I learned from their responses that this may be true for me but sadly not for all special needs moms. WHY NOT?!?!
The mom in the coffee shop line said she gets nervous because some special needs parents are defensive and she doesn’t want to have to explain to her daughter why that parent was mean to her when her little girl just wanted to meet the other little girl/boy and know what was wrong with them. At this moment some special needs parents might be thinking “nothing is wrong with my child just because she has a condition!”
But something IS wrong with Harper!
She has Epilepsy and CDKL5. She cannot walk, talk, eat by mouth and the list goes on and on. I wish it were not the case but it is what it is and I am okay with who she is. Harper is a 5-year-old little girl who wants to be treated like a 5-year-old little girl. She wants friends and wants to play with them, and it’s my job to help her accomplish that.
And yes sometimes it’s emotional for me but that’s my problem and I deal with it privately. In my mind everyone should be asking questions. We as special needs parents are the ones who need to pull it together for the sake of our kids who want to have their own place in our world.
“What’s wrong with her?”
An example: I overheard a little girl asking her mom, “What’s wrong with her?” while looking in Harper’s direction. The mom said to her daughter, “I don’t know.” I looked at Harper and saw her wide-eyed and listening. I approached the little girl and said, “Harper would like to meet you. What’s your name?” The little girl responds and looks nervously at her mom. I tell her Harper has Epilepsy and cannot walk, which is why she is in a special chair. “She cannot talk but understands everything you say. You can talk to her if you want to.”
I turn to Harper and introduce the little girl and say “Harper, do you see her earrings? They are so shiny.” I turn and ask the little girl if she can show Harper her beautiful earrings and the little girl begins to talk to Harper while the mom begins to talk to me. The opportunity to spread the word, advocate for Epilepsy and Harper’s rare CDKL5 condition is set in motion as other little girls begin to come and interact with Harper. Other moms draw closer to hear about my baby girl. I see a faint smile on Harper’s face, as she looks at all the little girls coming near her and I know that she is happy. Above all, that is why we are here.
Harper has her own crown, and a bouquet of new friends
Harper made many friends and will represent NAMISS for the next 12 months as Miss Texas Princess Cover Girl!
Next Year Harper will attend the pageant and pass along the responsibility to the next winner while cheering on her sister Lily as she competes in the Jr Pre Teen Division. I reminded Lily that she could have participated this year. Her response was, “Yeah, I know but I just had to see what is going to be like first.”
I will worry about pageants again next year, right now I have Run4Hope to work on!
Follow Hope4Harper on Facebook to see everything Harper has been up to including the National American Miss Pageant.