The thing is...

I have a pretty vivid imagination. I day dream a lot. I have a lot of anxiety over almost everything. In my head I'm always playing out how things may go and reviewing each case scenario. I'm home with a 31 month old and don't get much of any adult face-to-face interaction on a daily basis unless you count therapists.

All these personality traits lead me to be...over sensitive? Paranoid? Stressed out about everything (including things that haven't happened/haven't played out yet)? Yes. Add in being a special needs parent and boy, is it a crazy world in here.

Lately I have been so aggravated with some companies and organizations who refuse to return phone calls or answer emails or tie up loose ends. As the consumer or donor, I shouldn't have to beg a company to give them my business, however it seems that's what it has come down to.

And I find myself asking...is this just how business is now conducted? Or is this how business is conducted when you use words like "special needs" or "disabled"?

I have recently been trying to get Emily into more groups and programs that aren't special needs based. We go to a music class about every other week and she loves it. The past two weeks I have contacted 3 places.

The first one was the Michael Phelps Swim School. We want to get Emily more involved with swim. Before signing her up I had to call with some questions. As a parent of a non-special-needs kid I would likely call with some questions, but as a parent on a SN child it is a MUST. I needed to know the pool temp (too cold her leg muscles will tighten and she won't to any leg movement=lessons are a waste; I know this my experience as this is the third swim program we have tried). I need to know if an instructor is in the pool with us. I need to know if they are teaching things related to swim (going under, floating etc) or if this is just a glorified playgroup early Sunday mornings in the water (something I am not interested in).

And, I need to make them aware of Em's latex allergy, and her medical background. Because frankly, it seems irresponsible not to disclose medical information to a group she's joining when the group has physical activities.

So the gentleman who answered the during-business-hours call was very polite, encouraging, knowledgeable, and helpful. As a result, I registered and coughed up the money. Sunday was the first lesson. Emily seems to enjoy it and it's what we are looking for (although I will say, the instructor wanted nothing to do with my attempts to speak with her before the lesson to explain that Em cannot kick on command etc which led to some uncomfortable moments in the pool when she was working with Emily 1-on-1 telling her to "kick - kick harder!" But I digress...)

After I called and spoke to the very helpful gentleman at MPSS I called a very popular gymnastics facility here in Williamsville, and a very popular Yoga studio that has a studio downtown and in Williamsville (is it PC to disclose the company names? Maybe not? I guess I won't.)

I called the gymnastics facility, learning this facility may have a group for toddlers led by a PT. I was super excited because Emily has recently started pulling to stand and also climbing on and over things. She also seems to be a bit of a daredevil and what better place to fall (safely) then in a gym?

So I called up Stumpfs...whoops, I mean undisclosed-gymnastics-place during regular business hours and also at a time where, based on the website, they have classes going on so that I could talk to a human.

No answer.

I tried back 5 more times throughout the day. No answer. I found this puzzling then figured maybe they screen all there calls so I'd leave a message.

I'm not a huge fan of leaving messages because I have a lot of info to leave. I had lots of questions for the gym given Emily's latex allergy and her shunt/mobility. So maybe they found all this annoying? Maybe. But our free time is valuable. Emily has 6 therapy sessions a week (plus music....and now swim lessons). So If I am going to book her up even more, it can't be a waste of time or money, because we don't have the time or money for that.

Or did they not like hearing "cannot walk unassisted" and "has a few developmental delays"?

So yeah, they never called me back and I guess I'll never know, so I can instead just draw my own conclusions based on being totally blown off. Gracias!

I also called the Yoga studio. Emily LOVES doing yoga with me...she adapts her own moves and it is so cute. I thought...what better than to get her in a group with peers, and add some kid stuff like roaring like lions? And, how holistic would kiddo-yoga be for her health and strength!? So I called with a few questions. The ?receptionist was difficult to hear and she was not able to give me any information on the Yoga Sprouts group. She noted I'd need to speak to the instructor. Great! Only, the instructor wasn't there. I left my name (after spelling it for her three times) and phone number.

I didn't hear anything for a few days, and seeing as how I had by then already scrapped the gymnastics idea and gotten all hyped up over yoga, I sent the instructor an email with my questions and interest.

The next day I received a call back from the same woman I originally spoke with on the phone. She told me she had my name and number written down but couldn't remember why I called. Um, okay. So I repeated everything and mentioned I had sent an email but haven't heard anything. She said she'd pass my info along (again) and gave me an excuse as to why the instructor hadn't responded to my email, and then assured me I would her something.

Fast forward 8 days and here I am...no response, yet again. In my head I'm fired up. Is this because they don't INCLUDE everyone? Can't they be professional and at least SPEAK with me before slamming the door? I should also note yesterday I forwarded the original email I sent to the instructor, to the yoga studio's general info email address, asking yet again to speak with someone about enrollment, and I still haven't heard anything.

**Update:

I just received a phone call this afternoon. The instructor was quick to tell me that "of course they welcome kids of all needs and disabilities" and then also quickly said the class is "almost full" and only has one spot, and is drop off, and they basically don't have parents in the room. She also wasn't sure that that environment, with 7-8 kids would best suit Emily.

Obviously I'm pretty disappointed...and I tried to process everything real time and take notes. She did say she offers private instruction in home/at studio which isn't necessarily a bad idea...except the class would have been $60 for 6 classes and I want Emily in a group setting. Private instruction is $45 for one 40-minute session. There was some discussion of if she ever has an assistant in the class, then someone could be there to help Emily. She also mentioned that if I get 4-5 other kids rounded up she can start a second class/have a smaller kid to teacher ratio. I'm thinking when Emily is a bit older to figure out how to make her own on-the-fly body adaptations for moves and poses I can look back into Yoga. I did look of some stuff on adaptive Yoga and it is out there...in Florida, California, and Massachusetts. Looks like it's an amazing thing. There is a man by the name of Matthew Sanford who has been paralyzed since age 13 and he has developed a whole adaptive yoga program. Further research to be done. I'm no Yogi but it looks like I'll be teaching Em some poses via web-based adaptive research for the time being.

Three years later...

Our Society is obsessed with perfection. It is a quest for the perfect body. The perfect job. The perfect house. The perfect life.

The perfect baby.

Today is the 3 year anniversary of Emily's Spina Bifida diagnosis. Three years ago, at 18 weeks gestation, we were told our perfect baby was not perfect. This anniversary is always difficult for Chris and I because it was the darkest day of our life, followed by the darkest period.

But from that darkness has come the most perfect, beautiful result.

In today's society words, beliefs, and view points continue to facilitate a need for perfection, while at the same time reinforcing the idea that imperfection cannot be tolerated. Look at the termination rates for Down Syndrome; they are estimated at 90%. 9 out of 10. The termination rates for Spina Bifida, while difficult to track down and pinpoint, are at 48% (I have used a study done in 2009, the year Emily was diagnosed and born). A 50-50 chance to make your mark in the world.

The bottom line: there is a dark cloud hovering over our society that suggests people with disabilities or who are cognitively delayed or who are medically fragile do not belong. Since our diagnosis, I have known this is the belief of some medical professionals. There is this perception that a disabled child, or a mentally challenged child, will only have a miserable life. That they would be a burden. Doctors use terms like "poor quality of life" or "a life different that yours". They tell vulnerable, crushed parents that their child is less than perfect.

And then they tell you what the solution is to the imperfection.

Campaigns like Spread the Word to End the Word work hard to bring about awareness of disability slurs and how they contribute to shaping the misconceptions and oppression and violence towards individuals who may be disabled or cognitively delayed. Often press coverage of a person with a disability or permanent medical condition will say "...Emily, who suffers from Spina Bifida, is two years...", just reinforcing the idea that someone with a disability cannot possibly lead a happy life, but just suffers through it.

Through social cues and norms in media, print, and web, misconceptions about special needs are rampant and shaping how people view individuals with these needs. The majority of the time Emily is out with her walker we encounter staring, questions, and an assumption that she is to be pitied (through pitiful "awwww", "tsking" and a load of "God love her/God pray for her/God Bless her"). Using a wheelchair, a walker, or forearm crutches, doesn't equal misery. But that is all too often the perception.

I was reading this NY Times Article written by blogger Amy Julia Becker, and I made the mistake of reading the comments. Below are direct quotes from the 200-comments section of the article, with most comments shocking me:

"What a naive bit of nonsense! No parent should welcome a mentally or physically defective baby that will grow up to a burden on society. No society should either."

“The ones who suffer? The SMART kids. Only a deeply self-destructive society dumps all of its resources into a population that, frankly, isn’t going to show a return on the investment.”

These comments clearly speak for themselves. But what's frightening to me is, these people are lurking all around. Sometimes their bigotry is direct, and sometimes it's veiled. Sometimes this is what is in their heart, even though they don't say it to your face.

I realize now, three years later, that the scariest thing about bringing Emily into the world is not her diagnosis. It is not the doctor's appointments, the therapies, the delays, the worries about her.

The scariest thing is knowing what's out there in the world. It's thoughts and beliefs as exemplified from comments quoted above.

The thing is, those dangers would still exist, Spina Bifida diagnosis or not. It is Chris' and my job to teach Emily about the world, and with that comes both good and bad. But Chris and I are proud to be parents of an individual who has the qualities we hope to be instilling in Emily. I look forward to knowing the adolescent and adult Emily is going to grow into. I am so thankful for a family that supports and shares our views, and for a Spina Bifida community and organizations that understands and are working hard to help correct misconceptions.

We will sleep at night knowing that that the foundation we are giving Emily lets her know she is an equal. She is kind. She is thoughtful. She is smart. She is considerate. She is valuable. She is an individual.

She is loved.

And that she has always been, and will always be, welcome in this world.