Clouds, May 2010

Clouds, May 2010

Monday, January 7, 2013

you're invited

I have never had much interest in dying my hair. 37 years later, it's the same shade of brown that I was born with. Granted in natural sunlight it has a little bit of auburn goin' on, but basically I am just brunette. However no one ever looks at me seemingly thinking, "Is that color enough for her? She should try highlights. It would make her feel good."

I know that look because I have seen it from people who know us, but do not know us. Newsflash: if you look at my child differently, so will your own children.

This type of shallow judgement pisses me off as much as people who can't seem to offer their own view, without insulting the opposition. Such as, "I hate brown hair. I don't understand anyone who can live with brown hair. People with brown hair are clueless." Versus simply saying, "I love red hair & I think it's a beautiful color. People with red hair are very smart!" Because if you only communicated the latter, I would say I agree... I would tell you my sister has beautiful red hair & she is one of the most intelligent people I know.

But instead, if you unnecessarily insult a different hair color then I don't give a rats ass what your opinion is... because you're putting me on the defensive instead of just inviting me to appreciate your view.

I do not know where the following words were first published, or when they were written, but I do know why. I have seen several variations, many giving credit to one Erma Bombeck. Despite the differences between the republications, or how the precise version of the original goes, they are still beautiful & poetic & an incredibly worthy reminder.

The writing begins with a question: Did you ever wonder how parents of children with special needs are chosen?

Considering the idea on a spiritual level there is a quote, a thoughtful conversation if you will, between G-d & an angel. They are speaking of a woman who is to become a new mom.

G-d tells the angel that the child He is going to give this new mom has his own world, & that it's not going to be easy. The angel gasps when G-d says this woman has enough selfishness, because the angel doesn't understand how this is a virtue. G-d nods & says the mother needs to occasionally separate herself from the child or she will never survive.

"Yes," He continues, "here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she will be envied. She will never consider a step ordinary... when her child says 'mommy' for the first time she will be in the presence of a miracle & she will know it... she will see my creations as few people ever see them. I will permit her to clearly see ignorance, cruelty, & prejudice... but allow her to rise above them. She will never be alone, because in order for her to continue my work I will be at her side every minute of every day of her life."

Then the angel asks G-d, "What about her patron saint?"

G-d smiles, "a mirror will suffice."

People within the fragile x community have shared an equally profound perspective offered by Dr. Marcia Braden.

Dr. Braden is a psychologist & also a member of the Scientific & Clinical Advisory Board to the National Fragile X Foundation. She is well-known throughout the community of people affected by autism & other related disorders.

She is often quoted for her carrier perspective... referring to moms with this unique X who are called carriers, because they carry a specific gene they pass on to their children.

But she calls them carriers because "...they carry all the hopes and dreams possible for their children. They carry their fears, anxiety, struggles, defeat, and pain. They are capable of carrying the joy of success and the disappointment of developmental delays all at the same time. They carry a favorite toy, an old picture, or funny cap that brings comfort and security wherever they go. They carry mental ammunition to their school placement staffings and strategies for treatment. They carry the strength to defy all odds and march on with fortified courage and unconditional love."

The reality is we all know it's not G-d, or angels, or parents who ever see children as imperfect. Nor is it because of science that these carrier moms feel all of this weight. They may have moments when they think they are carrying their fears, but the truth is they are carrying fears caused by society and it has very little to do with the gene itself.

Although we know the fragile x gene causes a wealth of challenges... & by the way, may I use the word wealth? Because after all, isn't it? Perhaps a wealth of knowledge. A wealth of understanding. And on some days a wealth of inspiration vs other days which carry a wealth of hope.

Yes we know this gene causes challenges for the child & the people around them. But the fear... we are not "afraid" of global developmental delays, are we? We are not afraid of fine motor delays, or gross motor delays, or toileting delays. We are not afraid of sensory processing disorder or speech apraxia. We are not afraid of hypotonia (low muscle tone)or hyperactivity.

But we are afraid of what happens when society sees all of these challenges in one human being, & doesn't know what to make of them. When people do not know what fragile x is. Or when, saddest of all, people do not know how to embrace this.

I invite you to memorize 3 points:

1. Never use the word "retarded". Period.
2. If you find yourself witnessing someone having a sudden, difficult situation with their child (for example, a meltdown)... do not get involved. Do not stare. Do not make suggestions. If we need help, we will ask for it.

3. If you are a parent, treat your own child(ren) with respect by taking the time to properly explain something unfamiliar to them. Encourage them to ask questions so they do not make incorrect assumptions.

Maybe you already recognize these ideas in everyday life and if so, then you are likely one of the angels among us. Know that any parent of a child with special needs would carry few fears, if society as a whole made an effort to understand differences the way we do.

If we define patron saints as chosen protectors over certain areas of life, then perhaps it's true we (parents of children with special needs) are patron saints. Even Jewish moms like me.

Therefore as brunette Patron Saint of Hayden I formally invite you to diminish my fears. I love my brown hair & I love my son. You have an invitation to love him, too. It's up to you to accept it.

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