Family, Parenting, Special Needs

Tread lightly…

mae every dayRecently, I attended a meeting of our local school board.  They  were getting together to discuss a projected budgetary shortfall and, as a new member of the school community, I am interested in learning more about how it all works.  I introduced myself as a parent but didn’t indicate that I had a special needs child.  Truthfully, it didn’t seem to me to be relevant; I was just a parent wanting what is best for her children.  Although, as a special needs parent we aren’t allowed to think about “best.” By law, we are entitled to “appropriate” so the word “best” is far out of our reach.  But, that wasn’t on my mind at all as I settled into my seat and made polite small talk with the woman next to me.

The budget conversation inevitably included discussion of special education.  There was a moment when someone suggested that they used to keep a financial cushion because the boiler could explode. Now you had to maintain a cushion because you never know who could move into your district.  This was followed by a comment from a school board member, “We have a $50,000 child we have never even met.” I guess she is referring to a child whose needs are so severe that they have an out-of-district placement. The district pays for the child to go to a school that can meet their needs since the district, for whatever reason, is unable to “appropriately” educate that child.

I didn’t say anything, my heart was beating too fast, my skin was too prickly and there were tears in my eyes and voice.  What I would have liked to say is: “A $50,000 child you will never meet? This probably means that this child’s parents have never really met him or her either.  They don’t know what their child’s favorite color is, or what they would like to be when they grow up.  If a child’s needs are severe enough to be placed out of district, chances are that child will never be a grown up, but a child forever. I bet that child doesn’t speak, maybe isn’t mobile. These kids are unpredictable, don’t always sleep through the night, require a small army of specialists and doctors.”

As a special needs parent I often feel like we are taking more than our fair share. It is clear in the glares of airline passengers or even glances over magazines in doctors’ offices.  I get it, my kid is ruining your peace and quiet.  Special needs parents have to develop a thick skin.  That’s been a little easier for us because Mae is totally unconcerned about whether or not someone wants to read quietly.  If she wants to jump and sing at the top of her lungs, she will do so with abandon…It is her blessing and her curse.

Mae had a rough start to the week at school, prompting a staff member to say to Colin, “You are lucky she is cute.”  Later, when he told me about it, we were laughing, “lucky she is cute? Or else what?”

When you have a special needs child, people say ridiculous things to you all time.  My favorite is: “I don’t know how you do it.” As if there were some sort of roadside dropbox I wasn’t taking advantage of.  She is my child.  I don’t spend my days wishing I could find some reasonable alternative to being her mother.

So, I have been reminded yet again this week how important it is to watch our words, and to remember that you have no idea what someone’s story is just by looking at them.  I don’t believe that any of these people meant to do any harm with their words.  I also know that whatever people may see when they look at my child is different than what I see.  She may be a budget line item to some, or a cute nuisance to others. To me she is magic and fierce. She has an amazing belly laugh and can jump higher than anyone in our family.  I don’t know what her favorite color is, but I know she hates jeans.  Chances are she will never be an astronaut, an actress, a fairy princess or a veterinarian, but she is my child and she always will be.  It is a lesson to tread lightly on ground we have never walked.  You never know when you could unwittingly cause pain.

Family, Parenting, Special Needs, Uncategorized

An Autism Vacation

Sky is the limitI have often wished that Autism took weekends off, and federal holidays.  One of the hardest things about having a special needs child is that it is relentless.  This can feel true with the other ones as well.  Occasionally when the boys are bickering, I think to myself that having a child who doesn’t speak really isn’t all bad.  However, on many Sunday mornings when your body wants a break and you want to chill on the couch with coffee and the newspaper, you can’t.  Sometimes you can, maybe she is feeling mellow and just wants to hang out, or maybe she wakes up at 5 and bangs on her door until you put her in the car which is where she likes to go first thing in the morning.  You just never know, and the not knowing means that even if you can chill on the couch on a Sunday morning you have one ear open the whole time.  In fact you never really relax because at any moment a tantrum can start.  Mae’s tantrums are like summer storms — they can come out of nowhere, rain furiously and stop as quickly as they started.  She bangs her head and bites her hands, she twists her body and kicks her legs, I can barely imagine what the internal storm must feel like for her because the outside is so dramatic.

 

This weekend was different though, this weekend we took an Autism vacation.  We were home, we were with Mae, we were in fact sanding and prepping the walls of the kitchen for paint.  Hardly a trip to the Bahamas, but we even managed to fit in not one but two trips to Home Depot.  It is glamorous around here these days.  Mae was calm, she was joyous, she happily joined us as we cruised the now familiar giant aisles.  When the sander was loud she did not attempt to drown it out with screams but went up to her brothers’ room instead and lay down in Pete’s bed.  There was not a tantrum, or even a complaint lodged.  I feel this strange sensation in my face and realize that it is my lower jaw relaxing for the first time in a while.  Yesterday, when I went running, I realized that I didn’t feel a moment’s guilt because I thought Mae might be home melting down.  I felt free.  It’s been a long time.

 

This change in behavior is due to a new protocol Mae is on.  When we made this move to the West Coast, part of the motivation was that really interesting research is going on in fields related to Autism.  Mae is part of a study on the effects of a new drug on mood regulation.  I had some serious concerns about taking this step.  I love that Mae bounces in and out of rooms like Tigger.  I don’t care if that’s a sensory seeking behavior.  To me it is part of who she is.  The thought of giving her something that would affect her personality made me uncomfortable.  It is hard for me to know what is Mae and what is Autism and can you love one without the other? I have worked so hard to accept and love her for exactly who she is that I was worried that this could change all that.

It is way too early to say whether this is a long term solution or simply a break in the clouds.  Either way I feel like we had a vacation from Autism this weekend.  Like all vacations, I didn’t know how badly I needed it until I felt myself wind down. Mae has taught me to adapt to anything, to enjoy the smallest victories and to love the people in my life for who they are right now.  I know that I am a better mother and a more compassionate person for the experiences she and I have shared, but this weekend reminded me that just because I can endure something doesn’t mean I have to.  It reminded me that we can normalize anything, and that is a survival mechanism that I depend on.

Mostly it made me remember how good a Sunday morning feels.  I am cautiously optimistic that we have more Sundays in our future and maybe we are really onto something.  For anyone who deals with an illness of their own or that of a beloved family member, the hardest part is that it doesn’t take weekends or federal holidays off.  I am reminded that no matter how grim things may be it is important to take a break: a walk around the block or simply a cup of coffee, but to try for some small period of time to find a Sunday morning.  Beach vacations in exotic places are great, but these days nothing feels more luxurious than than the quiet that comes on a Sunday when everyone feels safe and loved and knows where they belong.