Friday, September 21, 2012

Talking to People and Project

Now that Ava is getting bigger, older...and looking the part of a 2.5 year old, her differences are more apparent. Fewer people just assume she is just long for her age, and that has lead to some interesting encounters in public. Both good and bad.

Most of the time, it is not a big deal. Many people don't really pay attention to her (much to her dismay) or, they will flirt and talk back to her as she flirts and squeals at them. I am sure they see something different about her, but the vast majority of people just love her and see how happy and outgoing she is, and honestly are not that worried about what might be "wrong" with her.

Some people will ask questions. Which I absolutely do not mind at all. I might be in the minority as far as Special Needs moms go, I don't know. But I love educating people about Angelman Syndrome and Ava. It makes me feel like I am doing something to make the world a better and more accepting place for my sweet girl. I still use my Angel Cards quite often and have made a dent in the box of 1000!!! Remember them???

I see mostly that there are two groups of people that are the most willing to ask questions about Ava and learn about her. One is mothers who have special needs children themselves that I meet out and about. I guess because it is kind of a kindred spirit thing. We understand each other to a certain extent without even knowing anything about each other. There is a commonality, a bond there.

The other group is men. Just men in general. I don't know if it is because they are less worried about social grace or saying something unintentionally hurtful... I think women worry about those things whereas men mostly don't. But I have men all the time ask me about Ava- why she doesn't speak or walk well. Why she is so happy. Am I worried about the baby having the same thing. And it is so wonderful to educate them about Angelman Syndrome. Going to Lowes or Home Depot with Ava (who is the biggest flirt EVER, especially with men) is almost like going with a celebrity. We get stopped in just about every aisle!!!!

The other day I was at Rhea Lana (a consignment sale) and one of the volunteers and I were talking as she helped me with something. She was commenting on how cute Ava was and I thanked her and she asked Ava a question. I answered for Ava, then explained that she is nonverbal because she has Angelman Syndrome, and that she understands what is said to her...yada yada yada.... The woman smiled and said that she wondered if she might be on the Autism Spectrum or have CP (ironically those are the two most common misdiagnoses of AS) and that her son has Aspergers and is Bi-polar. We started talking and I gave her one of my AS cards, and we both walked away more educated about the other's challenges as a mother and the other's child. It was so nice.

But sadly, not all experiences are so positive. Today, I took Ava to the park before lunch. It was a beautiful morning and I really want her to start spending more time outside now that the weather has cooled off and she can walk more. When I pulled up, the park was very crowded with a moms group apparently, but the slides were open and a couple of the Ava friendly swings were open, so we went up there anyway. As soon as we got up there, Ava wanted down to walk around. And she had a BLAST exploring the playground area. And I was so glad that she didn't notice (or at least didn't care) that all of the mothers were staring at us and especially at her. I felt like I was going to come out of my skin. I wanted to scream at them to stop staring at her. I wanted to sit them down and give them a lesson in AS, manners, and how to act around people with disabilities. I wanted to run away and hide from them. Maybe it was my hormones, because usually I handle rude people much better. But today it just cut me to the core. Perhaps it was because my child was in their cross hairs, not me. I have a voice. I am an adult. Be rude to me. Stare at me. But Ava is a child. A toddler. And she cannot speak for herself. And I just felt like, how dare they do that to a child. Because they were not the stares of sweet smiles, thinking "how cute is she." They were gawking, rude, almost hateful "how dare she bring THAT child to the park with our kids" stares. And they pretty quickly all moved to the other part of the playground. Which was fine with me. We swung for a bit, then went for a nice walk around the park. At the end of the walk, one of the worst offenders was leaving with her children, and we were right next to the road out of the area, so she had to drive right past us. And she literally almost ran over a man walking his dog because she was staring at Ava!!! I just smiled and waved really big, as if to say "Yeah! I see you looking!!!" What else could I do?

I, of course, do not wish something like Angelman Syndrome on anyone or any one's child. Never. But sometimes I do wish that people could understand what it is like- the hurt and the pain and the issues that other parents never have to deal with. I wish that people were more educated about special needs and what is acceptable. I wish that they could understand that pity is not what we want. We just want to be seen as equal. Ava is different, and she may always be. But she is not any less. And if you spend any time around her, I think you see that.

Okay, on a lighter note...

I have decided to try this project to go above Archer's changing table, and have been searching for a photo to use. I still haven't decided if I am going to try and get Cole to take one of Angel One to use, or use one of these that we already have... What do you think? It will be in black and white...

This is the S76 that Cole used to fly in the Gulf of Mexico. It is on an oil rig in this photo.

This is one of the blackhawks he flew in Iraq. I wish it didn't have that sun shield thing on there. But then again, as hot as it was, it is probably a good thing!

This was taken by some brave medic (I think) during hoist training with the army. It is just a really cool photo!



Laurie said...

Yellow. Definitely the yellow helo.


And I could have written that post. I always feel like people are feeling sorry for me when I tell her story and instead I want them to rejoice with me in the miracle that is her. It never seems to come across that way so my delivery must be off.

Plus, I learned another way that Olivia and Ava are similar with speech and understanding. :) Love reading your updates.

Betsey said...

How hurtful and stupid. : (

But it's good to know most of your encounters are positive to neutral. : )

You should try for an Angel copter pic, that would be cool.

Unknown said...

I can't wait to see how your project turns out! FUN! I think our mommy hearts are so in sync...I feel just as you in this entire post. Once again, thank you for your honesty. Ava is so lucky to have you as her mommy!!!

Unknown said...

Hi Rachel, I just happened upon your blog. I have a son with Angelman Syndrome also. He is 25 and his name is Scotty. It is just about our life and what it is like with an adult with AS. When he was younger I would have given anything to know anyone with an older child to get a "glimpse" into the future. One of our greatest blessings is the fact that Scotty doesn't understand the concept of mean. It is not in his life experience. For the rest of us however it can be devastating. It is ignorance and nothing more. It is just a chance to show others the proper way to act. I agree with the above comment. Ava IS lucky to have you as a a mom fighting for her everyday. Hop on over to my blog!