During one of Alaina's Target shoots, one of the employees was trying to get different expressions out of her by asking her questions. She was asking about her brother and sister, how old she was, etc. At one point, she started asking about letters and colors. As she was answering the woman, I overheard the photographer remark several times how surprised he was that she knew the color red. The letter T. That she knew what sound T made and that tractor started with T. This in no way reflects on Target or their commitment to using diversity in their advertising. I know this person's comments were harmless, but I was still taken aback that he didn't expect my almost 7 year old, soon to be 1st grader, to know colors or letters or the sounds they make. Really? Is that the perception he has of children with Down syndrome? I have had tons of different thoughts swirling around in my head about this since that day. I wonder if that interaction with her will change his thoughts on other children with Down syndrome in the future.
Alaina did turn 7 a month ago. To say I'm a different person - and keep changing - as each day, month and year with her in our lives goes by, is an understatement. We're always learning, trying, doing and adjusting.
October is Down Syndrome Awareness month. All month long, I have seen post after post in my newsfeed that show pictures, facts, figures, stories and videos of people with Down syndrome doing extraordinary, and also every day, things. Most of these things make my heart feel warm, some make me tear up and some make me smile.
I used to do that. I used to share about everything I came across because I felt I was doing a service to Alaina to make sure people saw what all these other children and adults were doing and accomplishing. But I've backed off considerably.....and I have almost purposefully avoided more than a post or two about it so far this month, even though I know it is important. I can't quite put my finger on why.
I feel like I shouldn't have to convince people that Alaina's life with worth living. I shouldn't have to tell people what she might be capable of, or what she struggles with, all the time. I don't want people to like my daughter because of her diagnosis - she's not anyone's mascot. I don't want people to say "those children are always so happy and smiling." I widely swing back and forth between loving and hating all the stories of young women and men becoming homecoming queen or king, or prom king or queen. Why is this news any more? If these kids truly believe their friend is deserving of being queen or king, why does it always need to be viral nation wide news? Who is that attention truly for? I am NOT saying that these kids don't have the absolute very best of intentions in their hearts, love their classmates, and appreciate the perspective they have brought to so many lives, but the more we keep making this big news, the more it continues to be an "out of the ordinary" thing.
|Alaina was chosen to be 1st grad attendant for homecoming. I'm glad it was never mentioned it was because she has Down syndrome. It was just because she's Alaina!|
So how do I raise awareness and acceptance? I feel like the best way to help Alaina and other kids and adults with Down syndrome is to share ALAINA with the world. Not the facts and figures, or how people should treat someone with Down syndrome. I share that my daughter, despite her challenges, is reading. And rocking spelling tests. And wanting to have friends over for birthday parties.
|Just a couple of her friends she was so excited to invite to her birthday party!|
And if I'm going to share Alaina with the world, I'm also not going to sugar coat what life can be like. My daughter is many, many times more likely to develop leukemia than a typically developing child is. We do our blood counts every year - and even though the thought crosses my mind often - waiting for those results feels like torture - life can change unexpectedly in an instant. Alaina was almost 7 before we accomplished toilet training...and we still have struggles with it. Every time we go somewhere I have to think through an entire trip, packing extra clothes, planning bathroom stops. Can we really plan on being somewhere late? She gets tired and overstimulated easily. Will somewhere be too loud or too much for her? She gets very quiet, withdraws, and sometimes very upset when she can't take the noise or is uncomfortable. Is this the end of the world? No. But it is upsetting to her. Do we go or make her stay somewhere where she is genuinely uncomfortable or nervous?
It is such a slippery slope to me - this advocating thing. If someone is talking to Alaina or myself and calls her a Downs child....I often freeze. What do I do? This is obviously not the people first language we prefer to hear. She is not a Downs child...she just a child. Who has Down syndrome. But I don't want to be preachy and unapproachable. Does that mean that I let A LOT of things go that I hear people say? Absolutely. To me it's about picking my battles. Do I focus my energy on my daughter or on changing everyone else? It's a balance thing for sure. If I never speak up and say something, it will never change. But I also can't go around being the PC police and demanding things of people. Some people will never change and the fact of the matter is, for most, their language is not meant to be offensive. I have had to put a lot of perspective on that. Is it better to not always jump in and correct someone and give them the chance to get to know Alaina? If I promptly correct their language...will that end the interaction? Sometimes I think it does create a wall. But staying silent and allowing them to know her will incite REAL change. Real change inside someone - instead of just correcting language. All is important, but exposing people to who Alaina is I feel will do more than all the sharing, correcting and policing that I could expend my energy on. That is not to say I still won't share things from time to time, or language doesn't still hurt, but the overall net effect for me is energy goes to my child instead of the rest of the world on this topic. I choose to give people, most who I truly feel have good intentions, grace. I don't want there to be a PC barrier, that prevents them from asking about or talking to Alaina, that keeps them at a distance.
|Advocating for herself the best way possible - by just being Alaina!|
I am sure there are people out there that disagree with my...lack?...of advocacy. There are those that have just enough tact to work that into the conversation without creating a barrier. Maybe I don't have that talent! :) But what will I do when someone calls Alaina a name, or she over hears someone using a hurtful word, and she understands it's hurtful or offensive? We will deal with it. She will be resilient-I'm sure of it. All of us continue to deal with hurtful, sometimes offensive, things in our lives no matter what our situation may be. All I can do is instill in my kids that they are loved by us and to always, above all else, try to be kind. And when they run into the person who, intentionally or unintentionally, uses unkind words, they know they can come to someone who loves them and we will work through it. My hope is to instill in Alaina, and my other children, how they are perfect just the way they are. And nothing anyone says or does changes that. It will hurt, sure, but it doesn't not have to define them.
|Unknowingly advocating for herself by showing she can complete her schoolwork all by herself!|
I share things about Alaina from time to time not necessarily to promote awareness, but simply because I am proud of her and I am immensely grateful. Most don't understand the time and work that we put into that simple spelling test or potty training. How many hours of therapy and work were invested for years to allow her to be able to complete a spelling test - at a desk in a typical classroom - like her peers. That is something I NEVER take for granted. Not for one second. (This is a good place to give a "little" BIG shout out to the parents who have come before us, paving the way for our children to have the chance to be included in typical settings. They fought a tough battle. Some are still fighting.)
These are things that 7 years ago, we had no idea if the day would ever come. Like I have said before, this diagnosis has brought a clearer perspective of what really matters in life. How every milestone is worth celebrating - and we celebrated with all our kids knowing that the things they accomplish are not to be taken lightly. We were given that gift from day 1 with our first child and got to benefit from it with all of our children. No matter how difficult or easy those milestones have been.
|Proud grandma and grandpa|
|Auntie, Uncle and cousin love|
|I consider this advocating. If someone is unsure about Alaina, how can you not witness the love between her and her family and not realize how wonderful it is?? That she is totally and completely loved the way she is.|
7 years into this journey, I feel like I'm back to square one on how I want to advocate for my daughter, if I'm being honest. Where my priorities lie in what I feel is important in her life now and into the future. I have some ideas in my mind of the things I would like to focus on, but I'm not sure on the path forward yet. But while I think and stew and attempt to figure it out, there is still advocating being done. So I choose not to focus on one specific month, but we make it an every day thing. And for now, I feel confident that Alaina's got it covered by just being Alaina! ;)