Surpassing Expectations

Sometimes we don't know what to expect. We plan something, and just hope for the best. Sometimes we miss out because we fear the worst and don't want it to be our reality. Last week we took the plunge. Caitlyn and I boarded an airplane bound for Oakland, CA. We were flying two states away to see some sunshine (and some really cool doctors...we saw the doctors, but the sunshine was a little MIA.)

As we sat on the plane waiting for take-off Thursday morning, just for a second I thought I was out of my mind. Then I looked to my right. There sat my beautiful daughter staring out the window in awe at the people walking around the plane. I knew she was nervous, she had a death grip on my hand. We took off into the air. There was no turning back. Caitlyn and I were headed to California for a much needed break from the every day life at home.

We took it easy Thursday, since we had gotten up around 2:30 am. Friday morning we got up, not knowing what the day would bring. It started with some sad news..had I been alone with Caitlyn, we likely would have spent all day in the hotel. Maybe even all weekend, for that matter. But we didn't. We ventured out. I think back, and I don't know what my expectations were for the weekend. I knew I wanted to have a fabulous time with my daughter, but was willing to make whatever she was able to tolerate fabulous! Well, she tolerated a TON!! We did the Ride the Duck tour on Friday and the Aquarium, the Bay Cruise, a 4-D turbo ride AND the cable cars on Saturday! Caitlyn was absolutely AWESOME through it all!!! Whatever expectations I had for our trip, she hugely surpassed them all!!

We have known about Rett Syndrome and the Natural History Study for 5 years. Here we sat in rainy Washington, and never went down to sunny California because we had no clue what it would be like traveling with a kid with special needs. Everything went perfect!! Now I know...Now I know what my girl is capable of, and I'm never going to say "no, I don't think she can handle it." From now on, we take the world head-on! If something doesn't work, so be it! But, we won't know unless we try!

Go or Stay?

When I was growing up, you didn't see a lot of kids with disabilities in the community. I know they were there somewhere, because they had their "special class" in our school building. I just never saw them at the movies, the store or even the park. Of course, it wasn't something I thought about at the time. Now looking back, I get it. I understand just a little of what went through the mind of parents, and a little of why I never saw kids with disabilities in the community.

Today, with a bigger push for inclusion in schools and the community, you would think that you would see more parents bringing their kids to the store, movies, the mall, or even library story time. Well, here's my views on the problem. The workers in the community today are from my generation. A generation when, although kids with disabilities were in our school buildings, they were not included. A generation that was indirectly taught that kids with disabilities were "different," and in some cases even taught that they were "less than." I'm sure that none of my teachers had the plan to effect the future in such a way. Back then (really, not that long ago...I'm only 30), no one had any idea that they were continuing a cycle of discrimination against a minority group that still has to fight for equality!

So, as a parent, the question is: Do you go out where people may stare, where workers may ask you to tell your child to be quiet, where people might laugh? Or do you stay in the safety of your home where people "get it." A story: My daughter's caregiver and I took the kids to the Children's Museum last summer. We had a great time! It was Caitlyn's first time there, and of course Gunner's too, though he was only a few months old. Caitlyn had a blast, and there were no melt downs! I thought "this is wonderful, let's go get lunch!" Should I have known better? Yes probably, but I was on a high having a great day with my wonderful kids! So, we went to Burger King. We got our food and sat down. I took Gunner to get his diaper changed, and that's when it all ended. We came out of the restroom, after discovering there was no changing table, and heard it...The screaming had started. We turned the corner and saw it...The head banging had started. Caitlyn was in the midst of full on meltdown. She had reached her limit. It was time to go home. As we got bags to put our food in, I noticed something. It angered me and saddened me. Every single employee behind the counter at Burger King was staring. They were staring at my 7 yr old in the middle of complete meltdown. I was embarrassed. Not because my daughter was screaming. No, I was embarrassed for the employees and their complete lack of respect, tolerance and understanding. Being the out-spoken mom I am, I said something. Of course I could have been nicer, but my heart was hurting for what my girl was being put through. I looked directly at one of the staff and said "do you have a problem?" He looked at me shocked and said "I...no." I said "Then do you mind not staring? My daughter has a disability and is non-verbal. She's having a tough time, and you are making it worse by staring. You are embarrassing my daughter! Learn some tolerance for people who are different than you!" We packed up and left. It is scary. We could have stayed home that day...We could have gone through the drive thru. We could have done a lot of things. Instead, I decided to try and make it a "normal" day full of "normal" events. By taking the chance that someone might laugh or stare, we had a GREAT time at the children's museum. Yes, they stared. But I had the opportunity to educate people about disabilities.

There are so many disabilities, especially in children, that you can't tell. A child with Autism looks just like a typical child the same way. They may talk a little different, or scream because they don't have the words. I think that many people in the generation of todays adults think "disability" and they see a wheel chair, someone who is blind, or someone who is deaf. They don't see a common looking child, and think disability. So, as difficult as it is to face it time and time again, I say Go! I say take the chance once in awhile to be part of the commnity with your kids. Who knows, by taking that chance you just might educate someone about your child and their disability.

What is "normal?"

My 9th grade English teacher had a sign on the wall that said "normal is a myth." He always encouraged us to look beyond society norms to do whatever it was we wanted in our lives. He was an interesting character. He also had a "Kill the TV" sign.

My dictionary defines normal as "conforming with or constituting a norm or standard or level or type of social norm." Have you ever looked at a definition and thought it needed to be defined too? So, I started looking for other definitions, in hopes of being able to find a definition that would define my own life as normal. Guess what? Society doesn't see my life as "normal." The only thing that fits the society definition of normal is my marriage. And that's only because we are a hetero-sexual couple. (disclaimer: I don't view any type of marriage as normal. Marriage is marriage, and society really shouldn't have a say in who can marry who.)

I finally found a definition that defines my life as normal!
–adjective
1. conforming to the standard or the common type; usual; not abnormal; regular; natural.
Since this definition doesn't say common type of what, I can only believe it is categorical. For example, eggs. The common type would be white, non-organic chicken eggs. So, I do hear by define my family as normal. We have a common family with a child with special needs. We meet the standard type of "special needs family." (but then you have to wonder...if 80-85% of families end in divorce, does that now make us not normal because we are still married? Maybe we aren't the common type.)

And so, I am lead back to Mr. Jamieson's 9th grade English class. Normal is a Myth. Since the common type of things is changing all the time, how can we define something as normal? If we all started buying organic brown chicken eggs, the white one's would no longer be considered normal. So there you have it. If you define normal as conforming to the common type, and the common type is constantly changing, what are we supposed to conform to? I think that everyone should sit down and define your own normal. What's wrong with having 6,775,235,741 different definitions for one word?

What about the rest of us?

Five years ago, when my oldest child was diagnosed with a rare neurological disorder called Rett Syndrome, I was devastated. We had already been balancing Early Intervention play groups, speech therapy and occupational therapy. Then we had to add to that balancing neurology, genetics and developmental pediatrician appointments; not to mention the add of managing seizure's a few months later.

I cried a lot in the first year after she got her diagnosis, and still do from time to time. I adjusted to the new "normal," as much as I could as time went on. One day somewhere in the journey, everything around me started to fall apart. We were given a diagnosis, referrals to new doctors and instructions to continue Early Intervention services. All those doctors and therapists we saw, and no one prepared me for what was to come next.

No one told me that having a child with special needs would effect every single aspect of my every day life. I had no clue the effect it would have in my relationships, my time, my state of mind, my ability to stay in control of my emotions and my dreams. Some doctors do a great job of gently giving parents the news about a diagnosis. Most make sure you have all of your ducks in a row to meet your child's new set of needs. Then, they fall short. Parents are left to discover for themselves that this new world that they are about to discover is going to turn their own world upside down. No one tells you that the divorce rate in families who have kids with disabilities is way above the national average. Just think...Some reports say that in a family with a child with Autism, the divorce rate is 80-85%!

Where do we go from here? Who do we reach for to make sure our own needs are met? How do we balance the needs of our child, with the needs of the rest of the family? How do we keep the emotions at bay, and remain in control of our own lives? I hope that by sharing some of my own journey (and other's if I can talk them into it), you will be able to get some of those questions answered. Until then, remember that the world of special needs is your new world. Instead of leaving the old world behind, begin the journey of merging the two worlds.