Sunday, February 3, 2008

Amy's song

Amy is the mother of Mighty Max, aged 2.5. She is an amazing woman, raising her son single-handedly and yet finding time to be a inspiring, supportive friend to me as I entered the world of the differently abled. The following words as hers and they express what so many of us in the CHARGE community feel and since I would neither want to paraphrase Amy nor attempt to decipher all the feelings I have on the matter, I'm reproducing her words below. In Reus' signing class, we are encouraged not to always say "It's OK" if our babies bump themselves. Likewise, on such a grander scale, it's not always OK in CHARGE. Things aren't, nor do they always have to be rosy in order to make others feel better. Sometimes things really stink on issues of health, emotion, finance, our child's disability rights, access to affordable medical care and services. They're daily battles. With practice, we just learn to pick ourselves up a little quicker after each fall because we have less time to dwell. Max has suffered so many of the same challenges as Reu and it makes truly heartbreaking reading to know that having summounted such challenges through the devastating early months of medical intervention, social ignorance can then continually gnaw away at that pride and amazement at their achievements.

Here now are Amy's words:

"just tired of it
This has been an emotional week and the frustration has been building for some time. So here goes...I'm tired of it. I'm tired of pretending to not be offended by people's comments of "retarded," "the short school bus," "those people," the "retarded" hand gestures. Why do I always have to be the bigger person and ignore such ignorance? And why don't others around me stick up for Maxwell in his defense? I often will speak up but others times I am caught off guard. And even other times I have basically been recommended to not say anything because it was harmless. Yes I know people "don't mean it," but that doesn't mean it hurts any less. I'm sure that "pre-Max" I used the word retarded and as a child I remember doing "the gesture." Am I horrified that I was so callous and ignorant? Absolutely. For the most part though, I was a child and simply didn't know any better. But boy I wish I had. Oh how I desperately wish I had known better.And the staring? Tired of it. So my kid uses a walker, please observe quickly and move on. If you have questions, inquire politely. Not "what's wrong with him" and please no whispers or pointing. Parents, the syndrome is not contagious...don't worry. If your children ask questions or talk with Max, you don't need to hush them. Let's teach them at an early age that disabilities are natural...a part of life...and nothing to fear. Encourage interaction. Trust me, they will learn and be inspired by my amazing son. Simply put, Maxwell is an incredible human being. So are his other friends with developmental or physical disabilities. They are perfect in God's eyes...and in mine. This is exactly how they were intended to be. Oh how I wish the entire world shared this belief...and didn't just pay lip service about taking care of "those in need."Come on people, don't lower your standards for those with disabilities. They deserve a life filled with love, joy and success just as much as every other individual. They simply might additional support to reach their potential. I feel like people find it "ok" for everything Max has to endure because that is part of his life. Surgeries, illnesses, therapy appointments every's a lot for a little guy...with or without disabilities. It's not ok, ok? Even though this has been our life for the past 2 1/2 years, it still can be emotional, scary and frustrating. But I simply choose to keep those emotions inside for the most part. But trust me, they are still there and shouldn't be shrugged off because we are "used to it."And speaking of lowering standards, I might as well mention another frustration. It drives me nuts when I have a concern about Max's progress and mention it to someone else. Do you know what I get most of the time? "Oh but he is doing so great" or "but he's so cute....look at him." SERIOUSLY? That's all you got? I'm sorry, I know people are trying to be nice and cheerful. But I and other parents sometimes simply need to express ourselves honestly and not always have to paint pretty rainbows for the world...just so we don't make anyone feel uncomfortable. Would parents of typical children be happy if their child was considered "globally delayed" yet was really, really cute?Of course would be sad sometimes that your child faced such an uphill battle and you would desperately wish it was easier for him.I don't need to be convinced my child is amazing or making great progress. I am head over heels in love with Maxwell...but my heart still aches at times. I ache that people don't take the time to learn his language, better understand his challenges, or communicate with him at his level. I ache about the future and what further challenges await us.When it is me and him, I don't stress about his challenges...we laugh, we play, we giggle and we live our lives as proud mommy and adorable son. The sadness or frustration kicks in when we are with friends, family or strangers and he is treated differently...somewhat of an outsider. So many people just don't get it or don't want to take the time to get it...and honestly I am tired of it.Just tired of it..."


Amélie Mia Chan said...

Its difficult i know, I recently freaked out when I saw the word retarded hand written in her notes in her bedroom by a registered professional, in the UK you can not use this word anymore 'retarded' is offensive in the UK which is why it bugs me that the charge info still reads 'retarded' such a hurtful word...restricted is now the used word...but I know where you Amy and others are coming from!!

its difficult!!

Lori Pullen said...

Well put.