Fitting Inside the Box Part 2

I appreciate all the supportive comments that were left on the last post :) I've often joked that becoming a new mother is the fastest and easiest way to lose all confidence you ever had in yourself! So often we (mothers) second guess ourselves and small decisions seem like huge mountains when they involve our children.

So to answer a few questions on the last blog post....let's start with preschool first.
Q: "I don't know which state you live in. Do they not have a classroom for typical kids that also has children with special needs in it?"
A: We live in PA. None of the traditional options are like this. The special education classroom they will recommend has only children with special needs. I like the idea of a program for typical kids that also has children with special needs in it. There is an inclusive preschool that is a private option, (has half children with special needs and half typical kids so they can learn from peer models) but it is a little further than we feel comfortable driving her three times a week and also working full time.  We are trying to make this transition smooth for Zoya and would like to have her a little closer for her comfort and ours. 

For those of you that don't know, I taught a self contained life skills classroom K-5 for 5 years before teaching 2nd grade. I work in the district that Zoya will go to. I actually teach in the school that she will attend for K-5, and hopefully also for preschool.  I know the ins and outs of the special ed. program in our district, which is both good and bad. I've had a chance to sit on the "professional" side of the table many times and soon it will be my turn to sit on the "parent" side which is waaaayyyy scarier! Sometimes I think I know too much, which makes each educational decision very hard. I know what most professionals in our district think about children with down syndrome....they're lovable, but they should be in a self contained classroom with "inclusion," which includes time walking in the halls with their typical peers (in a line with their peers with special needs) and time in the lunch room with their typical peers (sitting at a table with their peers with special needs) and time in the gym assemblies with their typical peers (but sitting in the back of the auditorium with their peers with special needs), etc. etc. For some kids this is definitely what they need, but I really feel like Zoya could benefit from REALLY being included, not just included enough so her percentage is high enough so the state doesn't slap the district's hands for having students (on paper) in a special education classroom too much of their day. I know there will likely come a day when Zoya will need more support and more time in a special education classroom, but if I never give her the opportunity to learn alongside typical peers, I will be selling her short.

I don't ever want to try and make her someone she is not because, let's face it, she will never "fit in" with this world's idea of normal or perfect.  I don't ever want to try and cram her in this world's "one size fits all" box because she is way better than that box anyways.  I don't want her to change who she is to try and fit in with this world's rigid ideas of success.  I don't ever want her innocent spirit to be broken.  This is the hope of all parents, but my child...thanks to her gift of Down Syndrome...has a fighting chance at keeping her child-like innocence forever and I will do all I can to make sure I don't interfere with that!  My thought has always been that I will give her the chance to learn alongside typical peers until it is not fun for her anymore.  I want her to be happy and joyful and I never want to chose a road that would make life stressful for her.  My goals for her are simple: to be happy and to use her God-given gifts and talents. 

If she never learns how to add two and three-digit numbers, fine....if she never learns the seven continents of the world.....fine, if she never learns how to read at a "Level Z" fine.....but if she never learns happiness, respect, trust, friendship, or compassion....well then I will have failed.  We are really trying to seek out every option for Zoya and find what will be best for her.  So you see, my thoughts on this matter are pretty complicated. Oh, and having her bussed somewhere is just not an option for this momma. Call me a control freak if you like, but that just will not be happening :) I'm not ready to trust a stranger to drive my child in one of the nations snowiest places :)

And...onto church.  Many of you wondered if we have considered trying to find another church. Yes that though has definitely crossed our minds. We have not been to church in months while we try to figure out what our next move will be. We love our church and know that it could really benefit from a program component that would include children with special needs. As hurt as we are, I don't know if we're ready to walk away without trying to pave a path, not just for Zoya, but for other children/families with special needs who need this too.  There is a huge need for some type of special needs program at our large church and if we don't do it, then who will?

Mahatma Gandhi said: "Be the change you want to see in the world."

And please don't start thinking I'm some inspirational person setting out to change the world. I'm just as tired as the next person some days and don't feel I have an ounce of fighting energy left in me. These past few months I've seriously considered not going back to our church because it would be so much easier and less hurtful.  I think I NEED to try and work out something with our kids ministry that will help the program be more accepting of children with special needs, but do I feel like it? Not really. It will take a lot of time an energy. But how can I only wish for the end result without putting any work into it? That is just selfish. So many times I've stepped aside in life and let things continue the way they were even if I wasn't happy with them because it was just easier that way or because I didn't feel like exerting the energy required to make the change, or because I felt like a whisper in the wind.  So this time, hopefully I can be the change I want to see.  And if I fail at least I will know I gave it my best shot.  I have the perfect chance to set an example here and use my professional knowledge to lead others to Christ through our church. There are SO MANY families of children with special needs who don't attend church and I totally understand why! Church is supposed to be the place where you don't feel judged or like a burden, but too often families of children with special needs end up feeling this way. 

So where do we go from here? Another commenter said: "A thought ... for church ... maybe somehow pull off an educational thing, to make people feel more comfortable and/or knowledgeable??" This is part of my master plan in my head :) First on the list is gathering up a team to work toward this goal. Next will be working to get the word out and find volunteers to act as one on one buddies or possibly a classroom "special needs aide." I have the ideas and I know what needs to be done, I just have to be the catalyst to make these thoughts go from my head to other people's hearts.

There it is, in not so few words....we are breaking down the walls of the boxes that have been named "normal" and "down syndrome" and "perfect" and "success" and floating freely without boundaries, straying off the well-worn path and taking walks in new territories, all the while blazing a new path and leaving our fingerprints on the windows of life.

Fitting into the Box

I'm sitting here right now shocked by how defeated I feel sometimes being a parent of a child with special needs. I'm shocked because I guess I thought I'd be immune to these feelings since I CHOSE to be a parent of a child with special needs. But really, the only difference is that I never had to grieve the loss of the child I thought I'd have since Zoya was everything I dreamed of and more....I chose her and I chose her Down Syndrome. Lately I feel like I've had to fight for what Zoya deserves...to be given opportunities that any other 2 year old child would have. Preschool transition meeting is coming up and we already know what their recommendation will be....because it is the same recommendation for all children with Down Syndrome, regardless of their abilities. Then we will have to fight for her to have a chance to learn alongside peers without special needs.  I wish people would look at Zoya first and her Down Syndrome second. It hurts my heart when she's automatically placed in the down syndrome box. Why? She has down syndrome? Why shouldn't she be placed in that box? Well, because that box was made by people who don't know and love someone with down syndrome. Plain and simple.

Church is another example of why I feel this way. In addition to the FACE COMMENT sometimes I just feel like there isn't a place for her at church. It's awful to feel this way because IT'S CHURCH! I've been unsuccessfully working on a special needs component for the kid's ministry program at church. It's been unsuccessful mostly because I am a little voice in a big world. The main problem? I truly feel like she is not wanted or accepted by some people in the children's program just because she is different. I didn't make these feeling up, I base them off of some comments that were made to us about Zoya.  I guess people don't know how to react to something they're not familiar or comfortable with.  Did you ever notice (those of you that have kids with special needs) that within the first minute of talking to someone about your child, you KNOW how they feel about children with special needs? Anyways, now I'm rambling.

My point is, it is so darn hard when the world doesn't see your child like you do.  I thought I wouldn't have these feelings because I knew what I was getting myself into being the parent of a child with special needs....let me rephrase that, I THOUGHT I knew what I was getting myself into :) You can never really know what it is like until you are part of the "parents of a child with special needs" club....biological or adopted.  I, like many new parents I'm sure, am so taken aback by my fierce love for Zoya. I would do ANY.THING for my daughter. I would walk through fire, fight a lion, jump off a cliff to save her....the funny thing I'm struggling with.....giving up my pride to fight.  Fighting for what I know is right for her is a given....I will stand and fight for what she deserves....but that doesn't mean it's easy to stand in front of a bunch of people who think they know your child because they read a report on her and tell them you think their professional opinion is wrong (and it doesn't mean those people don't make you waiver in what you know is right in your heart).  In fact, its downright hard to go against the grain. I don't like to ruffle feathers or draw attention to myself, but damn it I will do it for my daughter and I will put my pride aside.  Because I love this child so fiercely and see every ounce of the blessing she is, I'm taken aback when other people just see her as "Down Syndrome." To so many, that defines her. To me it is simply a part of who she is. She doesn't fit into the perfect box that the world created...but that box is really overrated anyways.  If more people fit into Zoya's box we'd have a pretty happy, loving, accepting, giving, trusting, damn near perfect world.