Cookies and Milk and The Faces of Zoya!

Zoya learned how to dunk cookies in milk tonight after dinner!! She loves these gluten free cookies with her almond milk! And she thought dunking cookies was the most fun thing ever!

"Mom you've been holding out on me, this is FUUUUN!"

This was not a typical Zoya smile and it cracked us right up! It's the cheesiest grin I've ever seen, almost like a fake smile but it was 100% genuine ha!

She is getting to be a cup pro!

This is the look I get when I'm saying something Zoya doesn't want to hear...she literally throws her head back and keeps it there til I stop talking! Wonder where she learned that....seriously!

I don't even know what this one is all about...pretending to be mad at me....but then...look below....

this look came two seconds later so I knew she was faking!

Strike a pose!

"Mom I told you I'm done going potty don't ask me to go more again! I've had it!"

And...two seconds later......FAKER! So dramatic!

The drama show continues....

Zoya's new favorite big girl thing to do is get to drink out of a cup standing up! She is a cup drinking pro...but as Shawn says she is NOT a walking cup drinking pro! She does pretty good if she stays in one spot:)

"Please sir, may I have some more?"

When did she become such a big girl??

Lovin my Zoya girl....we are truly blessed to share our lives with this angel! She is so full of life and love:)

P.S. still working on those pics of her sassy attitude and dirty looks....Shawn about peed his pants laughing tonight when he saw the dirty looks for the first time tonight....I had to turn my head so she wouldn't see me laughing....stinker!

Zoya's First Super Bowl! and sneaking in some football therapy!

Believe it or not we turned the Steelers going to the Super Bowl into a chance for some hard work and therapy!  I've been researching visual perception and crossing midline (google "crossing midline" and you'll get a ton of results) a lot lately and think Zoya really needs some practice with crossing her midline. She tends to use her right arm for things on her right side and left arm/hand to reach things on her left side and rarely crosses over her body to reach for something unless I help her by gently holding down her other hand.  She can easily cross midline, but is not doing it a whole lot yet unprompted.  We are also going to start working more on using two hands together! Crossing midline is really important for many reasons and it is said to help make new connection pathways in the brain, thus making processing and learning easier. Your brain has to "cross midline" for many things....if you think about reading your eyes read from left to right, you have to move your tongue from one side of your mouth to the other for chewing and moving food.

So with that in mind, one idea I had was to put some doodle paper (that I got for $1.99 a roll) up on the wall (with a "Go Steelers" message) hoping Zoya would draw from left to right with big sweeping movements of the marker and/or crayon. She mostly drew toward the right hand side of her body since that is the hand she was drawing with and the hand she seems to be dominant with.  With a little help and modeling, Zoya was crossing over her midline to draw big long lines from left to right and right to left. It definitely does not come naturally to her, but hopefully with some practice she will feel more comfortable crossing midline and her brain will start to make that connection. We used markers first, then paint dotters, then crayons, then we finished up working on fine motor skills by putting stickers on the paper.

Even though I started this activity to work on crossing midline, it ended up being a really great way to have Zoya practice holding the markers and crayons the correct way using a three-finger (sometimes 4-finger) grip instead of a whole fist grip. This is something Zoya has struggled with. I was very surprised to see Zoya start to hold her crayons and markers in such a "big girl" way! I think because she was drawing vertically, her wrist was in a nice position and helped her to hold her crayons and markers using a little bit of a better grasp. I think drawing vertically probably helps strengthen arm and shoulder strength as well...so although I didn't plan the activity for these reasons, I really saw the benefits when I saw Zoya holding her crayons and markers so nicely! The crayons you see her using in the picture are triangle crayons from her Grandpa and Grandma, which help to promote a proper hold on the crayon. She does really well with these crayons and in one of the pictures you will see her awesome 3-finger grasp...I didn't even realize she was doing this until I took the picture and looked at the picture! Since this was the first time I noticed her holding her crayon so nicely, I'm curious to see if she continues using such a nice grasp if we color on a flat surface in a coloring book or something.

Overall this was a fun therapy activity (except Zoya thought several times she could draw on ANY wall-good thing I'm quick)...oh and she surprised me by having enough hand strength to take the cap off the marker and draw on her face. I left the markers out thinking it'd be safe since I underestimated her hand strenth LOL. Thank goodness for washable markers and baby wipes!

Reeeeeeach....

This is fun! (Even though in the beginning she wasn't thinking it was going to be fun!)

Smiling at her Dora sticker

Woohooo...big girl TRIPOD grasp all by herself!

Check it out!

And the real Super Bowl Fun......

She is signing "more" because I kept running into her and Daddy and she thought it was funny!

We practiced the raised arm "Go Steelers" while Daddy was at work and showed it off when he got home!

Watching the game with her whole body....wonder who she gets this from?

Zoya was saying, "Come on Roethlisberger, put your glasses on so you can see who you're throwing the ball to!" 

Working on a post about Zoya's new 16-year-old dirty looks and pout! I just have to get a picture of this! She is somethin' else! Love her to pieces :)



Who, Me?

Notice anything about this picture?

Let me help you out incase you can't see.....

AND

"What? I don't know how the dog got inside the house with the door closed???"

I've heard she also invited her speech therapist into the play house then ran out and closed the door behind her leaving the speech therapist alone in the house ha!

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.

More Robot and Mya Videos

I just can't get enough of this funny girl and her robot voice!  Her laugh cracks me right up every time too!

And here is Zoya and her buddy Mya. 

Robot Voice

Zoya's new most favorite Elmo DVD in the entire world is Best of Elmo 2 right now. This is her third video that she has formed such an attachment to. She still enjoys watching the other ones but it seems she get a new favorite for a month or two and then moves onto another new favorite. Anyways, she requests the video about 29 times a day! She asks for it by using a robot voice....I've been trying to get it on video and this is the best I've gotten so far! When I say, "Need more energy" (like the robot on the dvd says) she cracks herself right up! This laugh of hers is hillarious! You will see in the video that she is putting her dirty clothes in the hamper before her bath....she can't stand a mess!


I'm also happy to report (in teeny tiny writing so I don't jinx it) Zoya has been dry three evenings in a row!! Woohooo! We're sorta potty training but not really but kinda....the low pressure no stress way! We changed to pull ups except for nighttime.  We take her potty every hour or so and have changed her from being able to drink all the time to having bigger drinks less frequently so she is more predictable.  This summer I'll get serious about it.  She will start preschool in the fall and it'd be oh so nice if she was potty trained....even schedule trained would be ok!  She isn't asking to go yet (well she did ask a couple times but I don't know if she made the connection or just thought about it bc she was near the bathroom)....but she is staying dry and seems to be holding it until I take her potty every hour or so :)  As far as poop on the potty....that was a one time deal....she hides from me when she has to poop! And if I can see she is going I will put her on the potty and she will stop and hold it until I put her diaper back on!  Stinker :)

And just for fun....this is why Daddy is not allowed to pick out Zoya's outfits! aaaiiiiyyyyy!

Bucket Therapy! Part 2-Sensory Integration

So I just love this bucket! I think I'm going to write a book called Bucket Therapy...haha....seriously though there are so many cool things you can do with a big bucket like this! I have been working on coloring rice for Zoya to play with. It is more fun than just plain white rice:) Here is some blue rice I made and the typical way to play with rice using a cookie sheet.  (Note: I have a hard time not freaking out about rice being everywhere because every time we play with rice no matter how careful we are I find rice all around for weeks and weeks but I'm slowly overcoming my aversion to it and just sucking it up). Sorry about the pictures....our camera broke and we had to send it away to get fixed so this is a really bad camera that only works every third shot! She loved using the car in the rice and I thought it was good work for finger isolation.

But that way is so messy and really she is only using her hands to feel the rice. So I looked at the big purple bucket and thought I could put the rice in there and let her reach into it to play with it, but then I thought why not put her in the bucket WITH the rice! I started her with her pants and shoes on and her shirt off to ease her into it. Zoya has demonstrated some tactile defensiveness, but not so much that it interferes with anything on a daily basis.  She wasn't sure what to think at first but once I started taking her hands and putting them in the rice she seemed okay. She didn't like me pouring the rice over her bare back though! She didn't protest much, she just didn't look too thrilled. So to ease her into it, I had her touch the rice and play with it for a few seconds, then I would spin her, which she loves. This really helped her tolerate playing with the rice better! After about 10 minutes in the rice bucket I took off her shoes and socks and she would not put her feet in the rice. Once I spun her around again she had no problem putting her feet in...too funny. She refused to stand in it at first but after some more spins she was standing bare-foot in the rice with no problems! I think the proprioceptive input of the spinning helped her tolerate the rice better. After another 10 minutes I took her pants off and she had just her diaper on and was actually enjoying it! After about 30 minutes in the bucket I had to pry her out with Daddy's help making sure rice didn't fly everywhere! Let me just say, a little more rice got in the diaper than I anticipated! I didn't think ahead on that one ;)

Step 1: Put baby in the bucket and pour rice on her :)

I think Zoya is praying here: "Dear God please get me out of this awful situation I'm in!"

Eeeww, eeewww, eewwww, I can't believe they're making me do this!

Maybe it's not so bad?

Hi Mom, am I done yet?

Wait, this might be fun!

OK, I might be having fun but I am NOT putting my feet in this stuff!

Oooo that feels kinda neat!

Scoop, scoop, scoop...(Have I really been playing for 15 minutes already?)

I love this stuff!

Make sure you have a good clean up committee:)

And if you're interested in making pretty rice.....I used neon food coloring and vinegar. I'm sure there are measurements to use, but I just eyeballed it.  I used a large Tupperware container and poured some vinegar in, then whatever color I was using.  I let it soak infor five minutes and then drained the extra liquid.  I let it dry on wax paper.  In the end I ended up mixing all the colored rice together and it looks like ice cream sprinkles!

Blog Updates

I'm working on adding some tabs at the top of the blog. You will see contact info, FAQ's, Zoya's Story, and Therapy Activities. Although many of the tabs are still under construction, please feel free to comment or email with any questions you'd like to see under FAQs. I'm also hoping to add some sort of Reece's Rainbow Tab featuring a child a month. Enjoy :)