Don't know how he did it

But some how he got into my bathroom with a closed door. I only went in there to check because I heard a weird noise coming from in there & needed to make sure there wasn't some wild animal in there. 

There was a wild animal in there. One wild little boy who thought it was HA HA hysterical to unroll the toilet paper. 

I guess this is one of those mommy rites of passage right? 

Open Doors to Acceptance

Being a mom is hard. Trying to find a preschool for your children where they will learn skills they will use for life is hard. At school they will learn their ABC's, 123's, they will learn to sit in a circle, they will learn the rules of the playground. Not to hit their friends. Not to cheat. How to play tag. To listen to the teachers. To learn to be good citizens.

Being a mom to a child with special needs is hard. Trying to find a preschool that will treat your child with special needs like every other child is HARD. At school they will learn their ABC's, 123's, they will learn to sit in a circle, they will learn the rules of the playground. Not to hit their friends. Not to cheat. How to play tag. To listen to the teachers. To learn to be good citizens.

Are you surprised that I "wrote" that twice? Why? Are you surprised to learn that children with special needs need & want to learn that stuff too? Are you surprised to learn that they WILL learn those things?

When we looked at various preschools in our new area we looked at schools that would be good for both children. Where both children would be accepted, nurtured & where they'd thrive. Going to the same school was gravy for me because it meant one drop off in the morning & one pick up in the afternoon. Was I hell bent on making sure they went to the same school? Sort of, but I always knew that not every school was going to be good for both of them.

Here's the tricky part. Even though any one school wouldn't necessarily be good for both children, I wanted a school that was happy to try to provide an environment where both kids could thrive. I wanted a school where the director & teachers were willing to meet with me to figure out how to best teach Sean. To figure out how to bring consistency in what we're teaching him at home and in therapy.

What I didn't expect when I began my search was how many educators, who claim to want nothing, but the best for all children, pulled in the welcome mat at the first sound of Down syndrome. "No. We're very sorry. We're not equipped to deal with special needs." "We'd love to teach a child like Sean, but we're unable to ensure he'd get what he needs."

In my mind I assumed that in order to teach any child effectively, one must find out how that child learns. Does it surprise you to learn that typical kids learn differently from each other as well? I assumed that as early childhood educators they'd know that EVERY child has a differently learning style and that no one teaching style works for everyone.

So when I was pulled aside to be reminded that in order for Sean to join the preschool that Meredith is currently enrolled in he had to be walking "for the safety of the class?" I was annoyed, surprised and then angry. Very, very angry. Annoyed that I was pulled aside during morning drop off instead of asked to come into the director's office. Surprised that she felt the need to say "Oh I thought you were carrying him because it was easier." Um.. why yes. It is easier than dragging him along the concrete. What's your point? And then angry. Angry because what did his walking have to do with his ability to learn the things taught in preschool? Angry because my kid can butt hop faster than most full on runners his age. And angry because I thought I had found a school that was accepting of Sean. The director was nice though ::::insert eye roll here:::: She was going to let us hold off on paying the 1st tuition payment until September. "You know. Just in case he's not walking." Complete with whispering & head tilt.

Then I got really angry because what the hell did Sean's not walking have to do with the safety of the class? Because the teacher or assistant may have had to help him a little more? This particular class helps with potty training & diaper changes. Helping Sean get around would've been so inconvenient?

It turned out to be a blessing in disguise. We set out last week to find a new preschool for the kids starting in September. Hmmmmm if Meredith enjoyed BPC, why am I taking her out of BPC? Well.... as I explained in my letter to BPC, "it is unacceptable for either of my children to goto a school whose practices, intentional or unintentionally, communicate exclusion." And I firmly believe that. If Sean had been accepted, but the school wasn't a good fit, great we change him to a better fit. But at least Meredith would still learn that they tried when she asked why Sean didn't goto her school.

EDIT: We did find a wonderful school recommended by Sean's EI service coordinator. They have experience working with children of all abilities and they have some excellent programs for both kids. 

Sean is more like his typical peers than he is different. He drinks his sippy one straw at a time.

He gets into more trouble.... mischief.... adventure than any kid I've met before him.

He knows how to sit & hang out and not run wild. Maybe that's what it was.... maybe the director assumed that his extra chromosome would make him a  wild man.

Maybe she thought he wouldn't know what to do with various toys.

Maybe she thought he couldn't hang in the fine motor skills department. HA!!!

Or that he wouldn't be able to sit nicely & enjoy snack time.

Or know what to do when he got to the door to get outside.

Maybe she thought he was just to silly for his own good. Ok. OK. He is, but..... what would that have to do with the safety of the class.

It could just be that she realized the teacher would be so smitten with this bad ass that she wouldn't be able to teach the rest of the class with the same amount of passion as she would have taught Sean.

All I know is that at the end of the day.... I don't have the energy to fight the constant fight of acceptance. For every one person, company, doctor, etc that isn't accepting of Sean or tries to dress up their discrimination to make it look like sincere concern; there are 10 more that are more than happy to accept that not everyone is the same.

And while I may not have the energy to fight, I always have the energy to shop around. I will always have the energy to teach my children that they don't have to knock doors down to open them. They can turn the knobs on several doors to find one that's open & just the right fit.

Necessity is the Root of Innovation

When there is a necessity to get your tushy off the concrete, but still be mobile..... You use innovative ways to get around.

Perception & Perspective

Just because I have accepted the fact that Sean has down syndrome does not mean I'm so particularly thrilled with it. I almost feel like people confuse acceptance of a diagnosis, condition, set of issues, etc with being ok with it. I'm not ok with it. I probably never will be. I am ok with raising my son the best way I know how and more than anything else in spite of the uphill battle we seem to face.

I'm also ok with answering any questions someone may have about down syndrome and what that means for us. I can't speak for all families or people, but I can speak for us.

Why am I writing this? Well.... I had the pleasure of speaking with a friend of mine yesterday & it got me thinking. I was happy that she felt comfortable enough to ask questions and felt that because she's close with us she wanted to know more about Sean and down syndrome.

I always assumed people knew that I was pretty open about our life. I guess not. She mentioned that she didn't want to offend me. I assured her that she wouldn't. That it's better for her to ask. I'm not offended easily.

But after we talked I realized that as comfy as I seem in my newish role as a mom of a child with special needs, I'm really not. I struggle everyday with the fact that Sean does not reach MY goals when his chronological age dictates he should. I struggle everyday with the fact that I have no idea whether things Sean does or doesn't do is related to down syndrome or just Sean's personality. I struggle with knowing whether down syndrome is entwined with his personality or not. I mean I guess it is. The way a person processes information helps to shape the personality right?

As I wondered why I struggle so much to find balance, I realized that I had the same difficulties with balance as a new mom period. After Meredith was born, I struggled with balancing her needs with my wants. I still struggle with that. I struggled with being the mother I was vs. being the mother I thought I wanted to be. Again... I still struggle with this one.

You see where this is going. I have accepted the fact that Sean has down syndrome in much the same way I have accepted that Meredith has brown eyes. It's there. There's nothing I can do about it. My struggle is and always has been the balance between their needs & my wants.

Someone (an old supervisor giving me a bad review) once said that life is all about perception and perspective. She perceived me as a threat to her job security (as noted by a corrected review by her supervisor) and so from her perspective everything I did annoyed her. What does that have to do with the price of grapes in China?

My life is all about perception and perspective. I perceive Sean as an almost 2 year old, but my perspective shows me where we need to make up the difference. My perspective allows me to see what are my wants vs his needs.

I try to project an air of confidence in my role as his mother. More so for myself to truly believe I can do this. I try to be proactive for both my children so that I can be confident in my ultimate decisions. Such as paying out of pocket for speech therapy so that the physical therapist & speech therapist are from the same therapy center because I feel this is the best scenario for Sean. I try to do my research on various subjects related to my kids so that I'm not caught off guard when/if something comes up.

In talking with other moms of both typical kids and kids with down syndrome and his therapists, it helps me to have a realistic perspective of what I can & should expect from Sean. It also helps me to see what are lofty goals (my wants).

Acceptance is really about perception and perspective. Who's perception? What perspective? I don't know. I guess the same way everyone grows & processes life differently, everyone's perception & perspective is different.

It's very hard to change a person's perception. Even if it's your own.