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| Pure Joy |
Friday, June 1, 2012
Flashback Friday
One of my favorite pictures of Lily. I took this 3 years ago. Lily was on the trampoline having a fabulous time. Sadly, her doctor has told us she should never jump on a trampoline again due to her hip dislocation/surgery. Today though, he said she can start back up with Hippotherapy (horseback riding) soon. We are waiting 3 more weeks before starting her with PT because Lily isn't ready to stand and we don't want to rush her. She is slowly maneuvering around the house butt-scooting and can get in an out of her beanbag chair easily. It's still hard for her to sit on a regular hard chair because of the way her leg dangles limply and she pretty much prefers her leg to be straight instead of bent at the knee. It's baby steps all the way with Lily and that is okay.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Monday, May 28, 2012
Church. Not Sure Where We Fit In...
I am Catholic. I was raised Catholic by my mom and she took us to church every Sunday. I also went to Sunday School for years (known as CCD back then, but now called Religious Ed). My dad was raised (quite pathetically) Methodist and as far as I know never went to a Methodist church except for maybe weddings and funerals. He grudgingly attended Catholic events like baptisms, first communions, weddings and funerals, but preferred to stay as far away from church as possible. Every Sunday, my mom would drag us out of bed, make sure we were dressed and fed us before racing (literally) to church. We were usually late and of course everyone noticed. It's kinda hard to be inconspicuous with at first four and then eventually six kids entering a quiet church. I rebelled a bit in high school and refused to go to church even with all the Catholic and mom guilt laid on me. I just didn't care.
My first year at IU (Indiana University), I felt an urge to go back to church and my dorm just happened to be within walking distance of the on campus Catholic Church. My first impression was thinking it was the most liberal Catholic Church I'd ever been in because the priests didn't generally dress like priests outside of church, were very laid back and often times comedians when giving their homilies. They actually allowed a Church Lady skit (Google Dana Carvey Church Chat if you don't know who the Church Lady is) one time with some students during Mass and we were rolling in the aisles laughing. I loved them. I also loved the music. Traditional music was taken and transformed into eclectic versions with acoustic guitars and soulful singers. It was amazing. I felt so connected to my faith again that I decided to get Confirmed. Something I had rejected in high school. After I graduated from IU, I continued to attend church regularly until we had the boys.
At first, it wasn't difficult. Taking Riley to church was very easy. Then the twins arrived and I was lucky to get out of my pj's by noon that first year let alone make it to church. Having 3 kids in 2 years was quite the adjustment and keeping all 3 quiet during Mass impossible. I usually left the twins at home and took Riley to church by myself. Reagan & Kaelan were showing signs of autism by the time they were 2 so you can imagine the behavior challenges we were dealing with at home often bled into our outings as well. Usually, if we took them to church, there was always an incident (or two). One would get upset and let out a scream or the music would get too loud and both boys would freak out and cover their ears. They'd make bizarre clicks, moans, cries and humms while rocking themselves. They'd bang their feet against the pews and usually Reagan escaped more than once with a gleeful grin on his face. Going up for communion was such a thrill (read sarcasm) too because Reagan frequently tried to make his First Communion as a toddler when he lunged every.single.time for the plate of communion the Extraordinary Ministers of Holy Communion was holding. It was pretty embarrassing because most people who didn't know the boys had autism thought they were just misbehaving brats. I got so sick of the disapproving stares on top of the twin's behaviors that I stopped taking them. Then Riley started Catholic School in Kindergarten. Most Sundays, I brought Riley to church and still left the twins at home. I even became an Extraoridinary Minister of Holy Communion and got more involved with the church albeit minus the twins. I think back and realize how rarely I brought the twins to Riley's school or to church. It was just too hard to manage both of them and even when we did bring them we'd be exhausted by the time we left getting absolutely nothing out of church, but resentment.
Fast forward to our current situation. I usually take the three teenagers to church leaving the younger four at home. Reagan and Kaelan have matured for the most part and can sit through Mass passably. They even had their First Communion thanks to my mom being their private Religious Ed teacher (she teaches 2nd grade Religious Ed every year). We still have embarrassing moments. One is known to announce loudly things you'd prefer no one to overhear. One actually danced to someone's cell phone ringtone while we were sitting in the 2nd row pew right in front of the priest. They also tend to give peace (shake hands for the non-Catholics) to each other quite forcefully and they always have to go to the restroom for an unusual amount of time causing me to sometimes send out a search party as to their whereabouts. There also may or may not have been a cartwheel executed on the alter during Leo's private baptism while we were at the baptismal font. I can seriously count on one hand the times all nine of us have gone to church together. And let me tell you we were quite the sight for all to behold and felt like we had a giant spotlight on us by the way everyone kept glancing at us (remember this post?). Lily and Dasha are easily accepted because it is obvious they have Down syndrome. Reagan, Kaelan and Leo at first glance appear "normal" until any behaviors flare up. Even when we manage to get everyone dressed, fed and out the door, it is no easy feat especially with 4 children on the spectrum to arrive early, get settled and then expect them to sit for an hour quietly. Lily and Leo cannot stay silent or still for any length of time and right now, it is a battle that can't be won.
So, I'm just trying to figure out how to fit church into our lives. Any ideas?? The closest Catholic Church which my oldest prefers because his friends go there isn't set up to have families with multiple children with special needs. Sure, they have a cry room, but it is pretty small and usually filled with little kids and babies. My teenagers really don't want to be in the cry room anyway, but I can't trust the twins to sit alone out in the main sanctuary. How do we make it possible for ALL of us to attend church without losing our minds in the process? I do know some churches have special Religious Education programs called SPRED, but our church doesn't. Those program also tend to work with older kids not little kids. There just seems to be a missing element for the younger than 10 set with special needs. With all three of my boys (twins & Leo) on the autism spectrum, we were dealing with behaviors by the time they were 2 years old. If I only had one child with special needs maybe it would be manageable, but not five kids. I know we can't be the only family out there struggling with their church trying to attend and fit in with children who have special needs.
My first year at IU (Indiana University), I felt an urge to go back to church and my dorm just happened to be within walking distance of the on campus Catholic Church. My first impression was thinking it was the most liberal Catholic Church I'd ever been in because the priests didn't generally dress like priests outside of church, were very laid back and often times comedians when giving their homilies. They actually allowed a Church Lady skit (Google Dana Carvey Church Chat if you don't know who the Church Lady is) one time with some students during Mass and we were rolling in the aisles laughing. I loved them. I also loved the music. Traditional music was taken and transformed into eclectic versions with acoustic guitars and soulful singers. It was amazing. I felt so connected to my faith again that I decided to get Confirmed. Something I had rejected in high school. After I graduated from IU, I continued to attend church regularly until we had the boys.
At first, it wasn't difficult. Taking Riley to church was very easy. Then the twins arrived and I was lucky to get out of my pj's by noon that first year let alone make it to church. Having 3 kids in 2 years was quite the adjustment and keeping all 3 quiet during Mass impossible. I usually left the twins at home and took Riley to church by myself. Reagan & Kaelan were showing signs of autism by the time they were 2 so you can imagine the behavior challenges we were dealing with at home often bled into our outings as well. Usually, if we took them to church, there was always an incident (or two). One would get upset and let out a scream or the music would get too loud and both boys would freak out and cover their ears. They'd make bizarre clicks, moans, cries and humms while rocking themselves. They'd bang their feet against the pews and usually Reagan escaped more than once with a gleeful grin on his face. Going up for communion was such a thrill (read sarcasm) too because Reagan frequently tried to make his First Communion as a toddler when he lunged every.single.time for the plate of communion the Extraordinary Ministers of Holy Communion was holding. It was pretty embarrassing because most people who didn't know the boys had autism thought they were just misbehaving brats. I got so sick of the disapproving stares on top of the twin's behaviors that I stopped taking them. Then Riley started Catholic School in Kindergarten. Most Sundays, I brought Riley to church and still left the twins at home. I even became an Extraoridinary Minister of Holy Communion and got more involved with the church albeit minus the twins. I think back and realize how rarely I brought the twins to Riley's school or to church. It was just too hard to manage both of them and even when we did bring them we'd be exhausted by the time we left getting absolutely nothing out of church, but resentment.
Fast forward to our current situation. I usually take the three teenagers to church leaving the younger four at home. Reagan and Kaelan have matured for the most part and can sit through Mass passably. They even had their First Communion thanks to my mom being their private Religious Ed teacher (she teaches 2nd grade Religious Ed every year). We still have embarrassing moments. One is known to announce loudly things you'd prefer no one to overhear. One actually danced to someone's cell phone ringtone while we were sitting in the 2nd row pew right in front of the priest. They also tend to give peace (shake hands for the non-Catholics) to each other quite forcefully and they always have to go to the restroom for an unusual amount of time causing me to sometimes send out a search party as to their whereabouts. There also may or may not have been a cartwheel executed on the alter during Leo's private baptism while we were at the baptismal font. I can seriously count on one hand the times all nine of us have gone to church together. And let me tell you we were quite the sight for all to behold and felt like we had a giant spotlight on us by the way everyone kept glancing at us (remember this post?). Lily and Dasha are easily accepted because it is obvious they have Down syndrome. Reagan, Kaelan and Leo at first glance appear "normal" until any behaviors flare up. Even when we manage to get everyone dressed, fed and out the door, it is no easy feat especially with 4 children on the spectrum to arrive early, get settled and then expect them to sit for an hour quietly. Lily and Leo cannot stay silent or still for any length of time and right now, it is a battle that can't be won.
So, I'm just trying to figure out how to fit church into our lives. Any ideas?? The closest Catholic Church which my oldest prefers because his friends go there isn't set up to have families with multiple children with special needs. Sure, they have a cry room, but it is pretty small and usually filled with little kids and babies. My teenagers really don't want to be in the cry room anyway, but I can't trust the twins to sit alone out in the main sanctuary. How do we make it possible for ALL of us to attend church without losing our minds in the process? I do know some churches have special Religious Education programs called SPRED, but our church doesn't. Those program also tend to work with older kids not little kids. There just seems to be a missing element for the younger than 10 set with special needs. With all three of my boys (twins & Leo) on the autism spectrum, we were dealing with behaviors by the time they were 2 years old. If I only had one child with special needs maybe it would be manageable, but not five kids. I know we can't be the only family out there struggling with their church trying to attend and fit in with children who have special needs.
Tuesday, May 22, 2012
Headed In The Right Direction
Speaking of sitting, Lily is eating so much better now that she can sit up in bed and we hope she can regain the 6 lbs. she lost while wearing the cast. Surprisingly, I even got her to eat Papa John's pizza the other night. For those that know Lily, know what a extremely picky eater she is. For those that don't know Lily, let's just say she favors the color beige and I can count on my two hands foods she willingly will eat. Her diet, since this all began, has consisted of yogurt in the morning, McDonald's chicken nuggets and french fries for lunch and a special cereal we've made her for years consisting of a pureed fruit (think Gerber pears, apples, pumpkin, sweet potato and bananas), protein powder and Gerber Oatmeal mixed together. She loves it. She also goes through several bowls of "Oats!" (aka Cheerios) during the day. Now that her cast is off, I'm hoping soon we can get her sitting in her chair at the breakfast room table and work on her eating aversions again. It's always been interesting with Lily with regards to what she will eat. She loves Papa John's cheese pizza, pancakes from LePeep and will eat most restaurant's chicken and french fries. If I'm cooking, she will only eat chicken, french fries and occasionally pancakes. It is very hard to get her to try new things or textures. She is very quick to gag and choke and I hate seeing her in distress, but I'd really prefer to expand her repertoire of foods. I even tried a therapy back when she was around 3 or 4 called Feeding Friends. It was a speech therapist and an occupational therapist who worked with kids with feeding issues. Everything they did was based on food. Most of the kids would fuss and perhaps even lightly cry when working little games, singing songs or activities touching, tasting or even looking at food. Lily, on the other hand, would go into a full blown meltdown just smelling food. For example, they had a small rubbermaid tub full of crushed Oreo cookies and gummy worms. You were supposed to dig for worms. I thought, well it's chocolate and sweet so maybe she will give it a try. They pulled the lid off and Lily reared back against me and immediately flipped out from the smell. I couldn't get her near it, let alone touch it. She spent most of 3 times we went to the group (before I quit) mostly hysterical. The only time she calmed down was when they took a break and they swung the kids in a sheet (think like a hammock with the two adults holding the ends). She has two teachers, who I fondly call her drill sergeants, who've worked with Lily since she was 3 years old. They are the ones who have gotten her to broaden her horizons a bit in regards to food. They are the ones who got her to eat yogurt and pizza. They introduced her to chocolate and cookies. Thankfully, they still work with Lily (along with Dasha) weekly with her food issues and academics in our house. Obviously, we have a LONG way to go with her sensory issues especially with eating, but for now I'm happy she was willing to eat pizza the other night.
Saturday, May 19, 2012
A God Moment
Last Monday, Dasha & I were at Trader Joe's with what seemed like the entire NW side of town. Very busy. When we went to the check out, I randomly picked a line out of the 5 available. The man checking us out was chatting Dasha up & of course she was her most charming self. He at one point asked how old she was & I answered, "She's a tiny 9 yr old". He said, "Wow, she IS tiny!" Usually I don't tell random people she's adopted just out of the blue, but for some reason I felt compelled to share how we had adopted her from Ukraine 3 1/2 yrs ago. He said, "Really?" & then asked if she spoke Russian (I was pretty surprised he knew she would have spoken Russian). I replied, "Actually, yes she does" and told him how her new therapist, Olya, who is from Ukraine, recently heard Russian coming out of her mouth during therapy & how shocked we all were she'd retained a lot of it. Here's the God moment: He then turns to Dasha & starts speaking fluent Russian to her. Dasha immediately gave him a big smile & starting responding in English & Russian right back at him. BLEW MY MIND. I mean seriously what were the chances??
*This was originally posted on my blog's Facebook page, but wanted to share here for those who aren't following me on Facebook. :)
*This was originally posted on my blog's Facebook page, but wanted to share here for those who aren't following me on Facebook. :)
Wednesday, May 16, 2012
One Way Leo
We walked to the elementary school's playground that's really close to our house on Mother's Day. I haven't really seen Dasha play here because we have our own playset in our backyard so it's rare for us to go to other playgrounds. Since she has had recess almost everyday on this playground for the past 2 years, it obvious she has mastered it. It was interesting to see how much more confident she was on everything than Izzy. Dasha learns by example & modeling the best. From the looks of things, her peers have taught her well. She can pump her legs for swinging. She can hang from and maneuver the ropes with no difficulty. She flies down the slides and climbs all over. In other words, she fits right in with everyone else.
Izzy, on the other hand, was much more nervous and cautious. I'm sure that will disappear next year when she starts Kindergarten and has recess every day. One thing we noted was how all of the kids were drawn to Izzy like bees to honey, especially the boys. Of course, she loved it and was preening from the attention. I'm a bit frightened though what the boys will be like when she reaches her teen years.
As for Leo, think Forrest Gump and the saying "Run Forrest Run" replacing Forest with Leo and that will about sum up what it is like to take Leo outside. He just walks/runs/wanders with no apparent destination. We had to keep corralling him to stay at the playground. A great nickname for Leo could be One Way Leo because he absolutely hates to turn around and head back from which he came. There's always lots of drama when it's time to head home from this little one.
Overall, it was a lot of fun and we need to do this more often. I really can't wait until Lily is able to come too because she LOVES those red swings.
Tuesday, May 15, 2012
Oh How I've Missed You Bababa..
Leo is essentially nonverbal. Three months ago, Leo started babbling for the first time at almost 3 years old. He bababa'd for about 2 weeks on and off. It was usually randomly said and he never mimicked me me when I'd say it to him. Then, bababa took a 2 month hiatus. Not one bababa crossed his lips. At the time, I kind of freaked because speech is his biggest delay and we were hoping the floodgates were starting to open, but they didn't. What did happen when bababa went away was Leo gained the skill of running (still not sure if this will be a good thing or not since I'm not a big fan of runners on the autism spectrum -see this post ...kinda kidding). This commonly happens when a child starts developing in one area like gross motor (ie: running), while other areas like speech or fine motor seem to disappear or get put on the back burner of a child's development.
Two days ago, bababa reappeared. This time though Leo is copying me when I say bababa first. YAY! Now I'm back to hoping the floodgates are about to open. Here's a very short video of Leo and bababa. Aren't they adorable?? Plus, you gotta love that eye contact he gave me.
Two days ago, bababa reappeared. This time though Leo is copying me when I say bababa first. YAY! Now I'm back to hoping the floodgates are about to open. Here's a very short video of Leo and bababa. Aren't they adorable?? Plus, you gotta love that eye contact he gave me.
Monday, May 14, 2012
Why'd We Adopt?
I'm often asked why we adopted, especially after having 4 kids already, 3 with significant special needs. With Izzy, we initially decided to adopt for slightly selfish reasons. Not because there were millions of orphans out there needing a family. Not because I read a verse in the bible calling me to adopt. I simply wanted another daughter and we wanted Lily to have a sister in her life. Not just a sister, but a "normal" sister. We were a bit overwhelmed with Lily's health issues on top of her having Down syndrome, let alone dealing with Reagan & Kaelan's autism quirks those first 2 years after Lily's birth and I couldn't imagine having another biological child with autism, Down syndrome or any apparent health concerns. We also made this decision based on when the twins were only 8 1/2 years old and Lily was just 2 1/2. They were very different back then and at that time, we had no clue of what Reagan and Kaelan's possible level of independence would be as adults. We worried a lot about Riley having to take on 3 siblings with disabilities alone if something were to happen to us.
Once we made the decision to adopt, I researched our options extensively. Domestic (US) adoption seemed out of reach for us. We couldn't imagine a birth mother picking our family. We just weren't the typical couple hoping for a baby. We had 4 kids, 2 with autism and 1 with Down syndrome and who'd want their child thrown into that mix. Once I ruled out domestic adoption, I turned to all of the open countries allowing International adoption. I took into account location of the country, required time in country, financial requirements and family requirements. Guatemala seemed to fit us the best. They had very easy travel requirements (only one parent had to travel and it was a short stay in country), you could request whether or not you wanted a boy or a girl, it was close in proximity to the US and the children often came home at a very young age. Once we signed up with an adoption agency, it took us a year to bring Izzy home. She was 7 months old at the time.
The biggest question I know most people have is why in the world would we ever adopt a child with a disability. I know I wrote earlier, we initially only wanted to adopt a typical "normal" child since we didn't think we could handle another child with special needs. Funny how we think we can decide what we can handle. While waiting on our adoption of Izzy to be finalized, I became enamored with reading other people's blogs sharing their adoption journeys. Somehow or another, I landed on a link of a photolisting of children around the world available for adoption. As I scanned the faces of orphans desperately needing a family, my eyes landed on a face that looked strikingly like Lily. My heart stuttered. WHAT?! They have kids with Down syndrome available for adoption. People do that???? I clicked on the picture to enlarge it and I lost my heart. She was beautiful....and living in orphanage in Poland.
Well, that led me to start scanning all of the pictures on the website and I found several children with Down syndrome available in other countries for adoption. I was shocked. Why were there so many orphans with Down syndrome? I next did an internet search of "Down syndrome adoption" and I learned there was actually a waiting list in the US to adopt babies with Down syndrome. Reece's Rainbow also popped up in the results and I clicked on the link which pretty much sealed our destiny. Thru Reece's Rainbow, I learned how in other countries there is no support from anyone for a family with a child with a disability. Most children born with Down syndrome (or other special needs) are left at the "baby house" usually at birth. Many birth parents NEVER visit their child in the orphanage. It broke my heart. Matt and I always said we would love 10 Lilys. To think of a child like Lily living in an orphanage rotting in a crib made me sick and so very sad. The seed was planted.
That was early in 2007 and Reece's Rainbow didn't show photolistings of kids available like they do now. You had to email the director, Andrea Roberts, and give her some idea of what age, gender and country you'd be interested in adopting from and she would set up a private family page for you to view available children. On a side note, I did happily find out the little girl in Poland already had a family committed to adopting her. So, I emailed Andrea a few times over the next year and saw many profiles (these profiles usually included a picture, DOB, child's country and a brief description of the child) of available girls with Down syndrome. I always asked for little girls close in age to Lily. I'd show Matt a few that I was drawn to and he'd always admire their cuteness, but then he'd tell me I was crazy. This was during and after Izzy's adoption.
Fast forward to May 2008, I went to the homepage of Reece's Rainbow and back then they had a banner of available children with Down syndrome at the top. I immediately noticed an adorable little girl's picture amongst the others that I'd never seen before.
Well, that led me to start scanning all of the pictures on the website and I found several children with Down syndrome available in other countries for adoption. I was shocked. Why were there so many orphans with Down syndrome? I next did an internet search of "Down syndrome adoption" and I learned there was actually a waiting list in the US to adopt babies with Down syndrome. Reece's Rainbow also popped up in the results and I clicked on the link which pretty much sealed our destiny. Thru Reece's Rainbow, I learned how in other countries there is no support from anyone for a family with a child with a disability. Most children born with Down syndrome (or other special needs) are left at the "baby house" usually at birth. Many birth parents NEVER visit their child in the orphanage. It broke my heart. Matt and I always said we would love 10 Lilys. To think of a child like Lily living in an orphanage rotting in a crib made me sick and so very sad. The seed was planted.
That was early in 2007 and Reece's Rainbow didn't show photolistings of kids available like they do now. You had to email the director, Andrea Roberts, and give her some idea of what age, gender and country you'd be interested in adopting from and she would set up a private family page for you to view available children. On a side note, I did happily find out the little girl in Poland already had a family committed to adopting her. So, I emailed Andrea a few times over the next year and saw many profiles (these profiles usually included a picture, DOB, child's country and a brief description of the child) of available girls with Down syndrome. I always asked for little girls close in age to Lily. I'd show Matt a few that I was drawn to and he'd always admire their cuteness, but then he'd tell me I was crazy. This was during and after Izzy's adoption.
Fast forward to May 2008, I went to the homepage of Reece's Rainbow and back then they had a banner of available children with Down syndrome at the top. I immediately noticed an adorable little girl's picture amongst the others that I'd never seen before.
I can honestly say I felt an immediate connection to her. Almost like I'd seen her before. With my heart racing, I quickly emailed Andrea at Reece's Rainbow and she responded with Dasha's profile (I still have that email saved). First thing I saw was her DOB. She was only 5 months older than Lily and she shared my mom's birthday. When Matt came home, I immediately showed him her pictures (there were 2) and he stared at her for about minute saying nothing. He then stated, "Wow, she's really cute." After that, he read the short paragraph about her that gave a brief bio. His next comment really surprised me. He said, "Now how does the process work to bring her home?" Later on that day, Matt admitted that when he saw her picture his first thought was, "Wow, that's my daughter." We committed to Dasha the next day and the rest they say is history: Dasha's adoption
Saturday, May 12, 2012
Facebook Page
I created a Facebook page for my blog and wanted to share the link. I'm still tweaking the page a bit, but feel free to *Like* Our Version of Normal. Pretty please? :)
Thursday, May 10, 2012
Baby Steps
Wednesday, May 9, 2012
Instamood
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| Otto: Resident ball hog |
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| Mojo |
Kaelan's Reptiles
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| Newman-Blue Tongue Skink |
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| Cosmo-Bearded Dragon |
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| Morty-Leopard Gecko |
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| Where's |
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| One of my favorites: Double Knockout Roses |
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| Lilacs: They smell heavenly. |
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