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 :)

9 Months Home!

Wow! It has been 3/4 of a year that Zoya has been home! We are really starting to see her little personality and it is so fun to watch! She has opinions and clear preferences, likes, and dislikes.  She is sassy as ever but such a good little girl.  She loves doing the right thing, although she does try to test us by doing the wrong thing. One of my favorite things about Zoya is that she wants so badly to make others happy and do the right thing.  She feels terrible when she does something wrong...lots of times, I don't even have to say anything to her, she tells herself "no, no, no" and then signs sorry if she does something she knows she isn't supposed to do! She listens so very well to directions (most of the time), of course the 1-2-3 "threat" is used at least a handful of times a day and she ALWAYS lets us count to 2 before she gets to doing what we asked (because she knows if we get to 3 that means time out!)...but she really has been so well behaved and such a sweet soul.  Her personality is bigger than life and when I think back to how mild and meek she was the day we met her it makes me sad to think that this personality was suppressed for so long....BUT....the way she lives life BIG is making up for lost time for sure!  We are so blessed and have been warned that any future children will likely give us a run for our money since she has been so good! :)

The biggest happening over this last month has been that Zoya has finally started to turn down food. This is GOOD! When Zoya was first home she would eat everything and anything, even if that meant pieces of garbage off the floor and non edible things.  She was obsessed with food and it took priority over everything else.  If she heard a food bag rustling she would drop what she was doing and literally run to the kitchen and beg for food.  She would eat and eat until we told her she was done and would sometimes whine when food was gone. We tried really hard to give her something to eat every single time she asked to show her that food would always be there when she was hungry or just when she wanted it. It was a delicate balancing act for a while not to overfeed her but also to make her feel secure that there would always be food and she would never go hungry. These behaviors were a result of life as an orphan, being one of many mouths to feed with few hands to help and being fed only once a day. We know she was fed a good lunch at least while we were there because we saw the sheer volume of it....but we aren't so naive to think that she was always fed that way. I mean from the time we met her until our embassy appointment she gained 4 pounds...and we saw what the other children were being fed-which was not comparable to what Zoya got while we were there. Anyways, Zoya still loves food and loves to eat, but the obsessiveness has finally mostly dwindled away. In fact, we took her to a restaurant in the mall and she was more worried about getting down and walking all around the mall (her new favorite thing to do) than sitting and eating. She will now tell us all done when she is full, or when she would rather play, even if there is still food left on her plate. It took a good eight months for her to finally feel secure and retrain her heart and brain to know she will never suffer from hunger again. Healing is a slow process, but each day we see tiny changes and look back to nine months ago and marvel at the differences in our angel. Amazing, redemptive grace of God!

As we've gotten to know Zoya over the past nine months, we realize more and more that God created this child, knowing all along, she would be ours. The similarities between her and us are too strong to be coincidental. In addition to looking like her momma and daddy, she reminds me of her daddy and of I so much in many different ways. She likes to stay up late and sleep in like her momma and values sleep just as much as her momma! (thank you God!! That was very kind of you since you know how much my body needs sleep). While snuggling on the couch with either one of us, Zoya has to rub her feet on us and wiggle her toes while laying there...just like her momma. She loves music and dancing and definitely got that from her daddy!  Shawn's rendition of "Beat It" (MJ) at wedding receptions might be in jeopardy of being moved to second place with Zoya's up and coming moves! She sweats in the heat just as bad as her daddy but has cold toes, nose and fingers in the winter like her momma.

"Not flesh of my flesh,

Nor bone of my bone,

But still miraculously my own.

Never forget for a single minute,
You didn't grow under my heart - but in it"

I can't imagine this girl without her Grandparents to love her....

without a million reasons a day to laugh like crazy...

without hundreds of snuggles and kisses every single day

without a family to call her own...

without independence to explore and learn...

without girly sunglasses (that she puts on her head all by herself) and cute dresses and bows...

without a home of her own...

without opportunities to grow and develop like every other child...

without a Daddy teaching her how to ride a bike....

But more than that, I can't imagine US without HER!

Happy NINE months home angel girl....you are everything we never knew we couldn't live without!

 

Bucket Therapy!

I stumbled upon a great therapy idea! It is great for physical and sensory therapy! I bought this purple bucket at Targ*t to store all of Zoya's stuffed animals in (okay really I thought it would be a nice place to throw all her toys that don't have a home and are laying all over the floor at the end of each day). Well Zoya wanted to climb in one day and so I helped her in. From there we started pushing her across the room really fast and then spinning her inside the bucket. She LOVED it. From there we found so many more great therapy ideas with the bucket! So cheap and fun!

So for these activities below you will need a round tub like this.

 The picture shows a 10 pound weight in the bottom. If you don't have one you could use a bag or two of potatoes or something else heavy. When we started these activities we did them without the weight, but today, after talking with our PT, I added the weight. I like the weight for several reasons.

First, it keeps the bucket from tipping over when Zoya tries to climb in and out of it.

Second, pushing and pulling heavy items is very good proprioceptive input to help children better understand and develop the concept of how much or how little pressure is needed to manipulate objects (thanks to our OT for teaching me all this!) Zoya has a very hard time grading movement. In other words, she has a hard time using the appropriate amount of pressure to manipulate objects. She is generally rough and not very gentle with her hands. I am coming to learn that this is not a behavior, but an inability to know how much pressure to use. If I give her a plastic cup that is too thin (like a disposable one) she will crush it because she is used to picking up her hard plastic cup or straw cup. We were working on her cheerio book the other day and she got the cheerio in the right hole and then would push it down so hard she would crush it. She didn't understand she needed less pressure than she would need for wooden puzzle pieces puzzle pieces.  

I threw some stuffed animals in the bottom so she wasn't sitting on the hard weight. A folded up blanket would also work well on top of the weight.

This is Zoya laughing after the spinning stopped! Spinning is such a great sensory activity! It gives so much input to the senses!

Pushing SOOOO hard! She does fairly well with the 10 pound weight but it is definitely hard work for her! You could start with 5 pounds if 10 is too much.

Another idea I had after asking the PT about "heel-toe walking" instead of flat foot walking....She suggested activities that would strengthen her ankles such as jumping on the bed or a couch cushion. I remembered I had this air seat in the basement (it was a ab-strengthening thing I used like a total of 5 times). It is awesome for balance, ankle strength, and sensory input because it has little spikes on one side! Holding onto the bucket gave her enough support without me having to hold her. She was bouncing up and down on the air seat.

We love this step stool from Grandma and Grandpa B. I fancied it up a little at Grandma's suggestion! This is great for stepping up into the bucket and then back down again. One of her PT goals is stepping up and down a 4" surface with one hand held (and ultimately walking up and down stairs).

She loves it when we pick the bucket up and swing her from side to side or twirl her around in the air. I recommend taking the ten pound weight out before you do it (I may or may not have tried to swing it with the weight still in it!)

Here is her face when the movement stops. She has a funny look on her face the entire time that she is swinging or spinning, then when it stops she cracks up.

More standing on the air seat.

She is telling me by saying and signing "ra-ra" which means round and round. We get a pretty darn good work out so it's a good thing there is two of us to take turns with the spinning! She just keeps asking over and over for more round and round! She would do this all night if we let her!

The bucket is also great for standing and sitting with control and sitting in the correct "criss-cross applesauce" or "ring sit" position. It is pretty impossible to sit in the awful "w-position" that Zoya loves since the inside of the bucket is too small.

Climbing in and out. Zoya can almost do this by herself! The bucket is just a smidge too tall still. But look how hard she is working!

Another way to incorporate sensory input is to pile some stuffed animals on top of her! I'd love to have some big bean bags or rice bags I could pile on top of her too...something with a little bit more weight to give even more input. Look at this sweet angel face! Notice her rosy red cheeks from working so hard!

This is so much fun that I didn't even realize we were doing therapy, Mom!

Climbing out...

More spinning...

These activities are also good speech/communication therapy. We make Zoya ask for more spinning or more swinging. She also verbalizes a lot while doing these activities! I read on another blog a great way to "cement" a learning activity is to do some physical activity afterwards, so this activity might be great to try after working on colors or numbers or a new sign or some other learning concept!



Anyone have any other favorite all-encompassing therapy activities they use with their kids?

Go Steelers!