Big Changes

We have very big changes happening with Leah these days.  Big changes mean our old way of doing things is gone and even though it's mostly a good thing, it's also a reminder that she is different, that we are different.  This is an update that I've been really dreading because it's hard.  Saying these words, well typing these words, hurts my heart a little bit.  You may remember a few weeks ago I posted that we were fighting with Leah's daycare about moving her into the toddler room.  We finally arranged a time for Ty and I to observe her in the toddler room along with the director of her daycare center.  She was in her zip-zac and spent an hour playing and singing songs with the other kids.  Ty and I thought she did great and while there were some things she'd need some extra help with, we were very excited about her being able to transition.  Apparently the director of the center thought differently.

We met with him a few days later and he had written up lots and lots of reasons why she would not be able to move.  Some of the reasons he gave were that she could roll over the other children's hands and feet and she wouldn't be able to sit on her own for circle time.  While yes, that is technically true, why should that be a deterrent?  Couldn't they find a simple solution to 2 very simple problems?  It felt like he was  grasping at straws and finding very petty reasons why they could not or would not accommodate her.  His final comment was that she could not move to the toddler room and she could not stay in the infant room after 18 months.  Ummm, what??!!  She had just turned 18 months, so I asked him point blank, "Are you kicking us out?"  His response was, "You can draw that conclusion."  So that's how you treat a child who you claim to "love and adore."  We did some pushing back and he agreed to let her stay in the room for 3 months while we found alternative child care arrangements.  I was ready to pull her out that day, but of course my practical self had to restrain because we still have jobs and didn't have anything else lined up.  The very fortunate thing is that we have a wonderful organization in town who does daycare and preschool programs for children with special needs, but also have mainstream kids there.  We are even more fortunate that Leah got in and is able to start this summer.... tomorrow in fact!!

I'm so disappointed that this is the way things had to be.  The daycare we are leaving is just down the street from us and these are kids who she'd eventually be with in school.  It's a small center and it did have a family-life feeling.  I loved her teachers, especially one of them in particular, and I know she and Leah are going to really miss each other.  And then there's this business of being reminded that she's different.  I think that's the hardest part for me, her being kicked out simply because of her disability.  It makes me sad for her because someday she'll understand, and it makes me sad for the other kids there who could learn from her.  In the end, we don't want her to be where she's not welcome, which is why we're not going to fight to have her stay.... even though we know they are violating Americans with Disabilities Act laws.  It's more important for us to put her somewhere that she is welcome and will be well taken care of.  My heart breaks a little that we were treated this way, and even moreso that she was treated this way.  

My heart also soars because of her new school!  We received the exact opposite treatment from them in that they did everything they could to make things work.  We could tell how much they wanted Leah to be there and how strongly they believe in their work.  There's a lot of excitement about getting Leah to a place where she can spend the day with her peers - her class is made up of kids who are 16-22 months old - and she'll be mobile in her new wheelchair.  It is true that when one door closes, another opens.  In our case, this new door is opening to an amazing opportunity and will be a much better place for her.  I am very thankful for this new change in our lives.

Wheelchair Pictures

Here is Leah with her new wheelchair.  You can see how happy she is!

On a Roll

Little Miss got her big girl wheelchair this morning.  What an exciting day for us!  We really wanted to get it this week, so Leah and I went to the medical supply company to pick it up.  It was actually a really great experience to go there.  The man we were meeting there, who's been working on her chair, was in a wheelchair himself.  I thought that was so cool.  He had a workbench and made a few different modifications to her chair after seeing her in it, and he was able to do everything anyone else could.  And he was really great at his job!  It gives me hope that Leah will be able to do something she's really good at.

I won't lie, when we walked into the warehouse and I saw her chair sitting there, it choked me up a bit.  It's just so final.  Getting a wheelchair at 18 months kind of seals the deal.  I'm still hopeful that she'll get up and walk someday, but it will probably take a lot of technology and won't be her everyday way of getting around.  This chair will be her legs.  But then we got her into it and she was so happy.  They did make a few adjustments to it, like moving the footrest down a little bit and the side bumpers in a little closer.  The nice thing about picking up the chair is that while we were waiting, all the girls from the office came in.  We got to see all people we've worked with throughout the process, and they got to meet Leah!  Our main contact, who had visited us with the test chair a few months ago, was so excited to see Leah in her chair.  They don't usually get to see their clients with their new equipment, so this was really special for all of them.  Leah was a little shy at first, but she started warming up and then showed off all her moves.  She was wheeling and turning and being so darn cute.  

This chair is very similar to the one in the video at the roller rink.  It has a few cool gadgets, including a tray that she can use for reading or coloring and a backpack for her to carry her stuff.  It also has a handle on the back (which also easily pops on and off) for us to help steer or push her.  This will be very helpful when we're out in public.  I'm really looking forward to getting her out in public with the chair, I wonder how that will go!

I'll get a few pictures of her new chair up over the weekend.  Check back soon!

Vacation!

We took a little family vacation last week and had a ton of fun.  We went south of the Cities  to Lake City, which is on the Mississippi River.  It's a cute little town with shops and restaurants and we stayed in a house that overlooked the river.  Being from a river town myself, I had a preconceived notion that staying on the river would be dirty and smelly but I was pleasantly surprised!  Our house was on a small bluff and we had great views up and down the river.  It's pretty much a necessity to stay in a house now that Leah is here.  She goes to bed so early that our alternative is sitting in a dark and quiet hotel room for several hours!

After spending the Memorial Day weekend here in town, we headed down there on Monday afternoon.  We visited the National Eagle Center in nearby Wabasha, and went back to Wabasha the next day to go to the largest independently-owned toy store in the country.  That was so cute!  It had lots of different rooms with books, trains, tea parties, dolls, and toys.  Leah loved the big wall of rubber duckies, and she really loved playing with the train set.  It also had an indoor carousel, which she really wanted to like but didn't.  She did like the llamas they had outside!  Our biggest miss on the toy store was that we forgot the zip-zac!  She would have had a great time wheeling herself around and getting to everything she wanted to see.  

We had a few fun excursions but we also had fun hanging around the house.  Our weather was chilly and rainy but there were a few moments of sunshine, and we were able to get outside with Leah in her zip-zac.  She rolled all over the driveway and even got up the courage to roll across the street to catch the ducks she'd been pointing at all week.  So great to see her independence!  We came home in time to have another long weekend at home.  What a great time off!

18 Months!

Little girl turned 18 months old on Friday.  I can't believe how fast time has gone by!  She is half-way between 1 and 2 and starting to show more signs of being a toddler... complete with temper tantrums and all!  If something doesn't go her way, she arches her back and waves her arms really fast.  Little miss drama!  We were watching some videos of her, and she definitely isn't a baby anymore.  Here are 18 things about our favorite big girl. 

1. The way she looks out of the corner of her eyes when she's being mischievious.
2. When she says "Hi!" to everyone she sees.
3. When she sits at the end of the driveway and waves to all the cars, bikers, and people going by.
4. Snuggling up close and tucking her arms under her when she's being held.
5. She says "MA!" Not mama or mommy or mom.  It's MA!
6. "Da" means lots of different things - it could mean Daddy, Jack, Jill, food, toys, or something we don't understand, depending on the tone of her voice.
7.  We live a few blocks away from the train tracks that run through town.  She will literally stop whatever she is doing when she hears the train horn. 
8. She loves looking at pictures and watching videos of herself.  When I tell her to to something on the video, she'll actually do it in person. 
9. She loves babies and little kids.  She points them out wherever we are - church, the library, the grocery store, on TV. 
10.  I love her 6 teeth, and she is more than proud to show them off. 
11.  She can find her ears, teeth, eyes, nose, tummy, knees and feet. 
12.  She smiles on command.
13.  She is miss independent!  She loves her wheels and the freedom of getting around.  Her favorite spot is standing or sitting in front of the door and looking outside.
14.  Outside is her favorite!
15.  She is very picky with her food.  Some days she'll love something and the next day she won't touch it.  I have to feed her 1 thing at a time.  If she is mid-bite and sees something else, she'll spit out whatever is in her mouth to try something different. 
16.  Socks don't stay on her feet long, especially if we're in the car.  It's her favorite thing to pull them off her feet.
17.  The way she shakes her finger and gets a very serious look on her face when we say "no, no Jack"
18.  The way her hair curls and sometimes looks a little reddish.

She is so incredibly sweet and everyone who meets her falls in love.  Here she is as an 18-month old!

Happy Mother's Day!

Happy Mothers Day to all the moms out there!  I had an awesome day.  Leah woke up at her usual 5:45am, then Ty, his mom and Leah went out to breakfast and I went back to bed until 9:30!  After a quick nap and lunch, Ty, Leah and I went to a small farm about 15 minutes west of us.  We saw chickens, sheep, lambs and cows, all of which Leah went crazy for.  She loves playing with her farm puzzle and Little People animals, so she had so much fun seeing them in person.  The farm has a big loop trail and we walked around for a little over an hour.  It was a beautiful day, sunny with not a cloud in the sky.  We ended our day with a homecooked meal of chicken parmesan, one of my favorites.  I couldn't have asked for a better day!

Here we are seeing the animals.  Look how close we got to the cows!

Hi Chickens!

And, as promised, here are some pictures of Leah in her new stander.  As you can see it allows her to be upright and wheel around.  It is a big bigger than her zip-zac, but it's very similar in size to the wheelchair she'll get. 

Fighting

Ty and I had a fight today.  The kind that brought me to tears and left me really sad.  It's a fight that we'll have a lot as parents of a daughter with special needs and one that will never go away.  It's a fight not with each other but with the outside world, and in today's case was with our daycare.  It's a fight for Leah, to give her the same opportunities as other kids, to have others accept her for who she is, and to be comfortable with her disability.  It's not easy.  It sucks.  It's what we have to do.  And so we fight.

We have been pushing our daycare to move Leah out of the infant room and into the toddler room.  She should have moved 2 months ago, but she's still spending her days with the babies.  So today I think we both reached our breaking point and got frustrated.  Their concern, which is totally legitimate, is that they want to make sure she is safe.  She'll be in her wheelchair with a roomful of other toddlers who like to push and who don't have boundaries or social graces.  We see her being a little bored and think she needs to be with her peers who are on the same level with her cognitively, mentally and socially.  If she wasn't in a wheelchair, she'd be moved by now.  And so we fight.

Ty and I both had a conversation with the daycare director today about Leah, and we both understood his point and appreciate that he's doing his best to keep our child safe.  I think we're just losing a little patience in how long it's taking for her to get there.  She'll be in her wheelchair soon (more on that in a minute), and I have a feeling she will absolutely love it.  It will put her up higher than she sits in the zip-zac and more at eye-level with other toddlers.  We see all the benefits of her being with her peers.  They see a wheelchair and a child who need extra care, and they will be faced with something different than they've seen before.  I can understand their concern.  I can also see that my daughter needs more.  And so we fight.

Usually when I'm at work, I can focus on my job and think about Leah only intermittently throughout the day.  I wonder how she's eating and if she's napping, but I generally don't worry about her.  Today I thought about her a lot and missed her more than normal, and I couldn't wait to pick her up and squeeze her tight.  How can I protect her and prevent her from ever feeling discouraged?  How can I teach her to keep fighting?  I suppose I have to keep fighting and hope she learns that she's worth it... and hope someday she doesn't have to fight as hard.

Now on to more fun and exciting news.  Leah already has a zip-zac.  Her full-size wheelchair  has been delivered to the medical supply company here in town for modifications and should be in our home by early June.  Yesterday we got another really cool piece of equipment, called a dynamic stander.  We saw a little girl at the roller skating party using this and of course Ty was drooling all over it!  It's a stander, kind of like what we have, but it is on wheels so she can stand and roll!  We put her in it yesterday and she went crazy.  She was rolling all over the house and we could tell how excited she was to try it out.  Last night after dinner we brought it outside and she rolled to the end of the driveway to wave to all the cars driving by.  It's a much different sensation to be fully upright and tall instead of sitting down.  However it is a big bulkier than her zip-zac and barely fits through our doorways.  Ty thinks we should save $20 every month so we can fix the baseboards and walls that are going to be destroyed over the next couple years with her wheels.  Oh well, a small price to pay for a little girl's independence.

Just in the last couple weeks I've seen an incredible transformation in her mobility.  She can successfully wheel around the entire house, from the kitchen to the bedrooms and back.  (Have I mentioned how much I love our 1-story house??!!)  She turns on a dime, which is pretty impressive to watch.  Neither Ty nor I can figure out how she learned to pull with her right and push with her left at the same time.  We also are amazed at the coordination it takes to maneuver a wheelchair, especially the turns.  You use your right hand to turn left, and vice versa.  She can make it down a fairly long, narrow hallway to our bedrooms and goes pretty straight, something that just a few weeks ago ended in tears halfway down because she got stuck and then got frustrated.  After PT this week, her therapist told me I probably didn't need to bring the zip-zac anymore, since she's pretty well mastered it.  I will bring the wheelchair once we get it so she can teach Leah how to get in and out of it.  The therapist is also still working with her on getting up and down from high places, like the couch.  Today, Leah tries to go down face first, but we're trying to teach her to get off backwards, something that is a little difficult because she can't feel anything until her butt touches the ground.  It takes some spacial awareness and also her trusting herself that she can do it.  

All in all, PT will probably wrap up sometime mid-summer, at least for a while, as all of her goals will be met by then.  We will still come back from time to time when Leah needs help to figure something out.  I think about her being totally independent, and that means she'll need to get herself into bed, into a car, onto the toilet by herself.  The things that we do everyday are the same things she needs to figure out how to do too, just in her own way.  Luckily she's a pretty smart little girl.  It took 2, maybe 3, PT sessions for her to figure out how to do turns.  Our therapist told me that Leah will not be a forever patient, but will see her when, like I said, we need help on a few very specific activities.  The therapist did say that she would benefit a lot from hippotherapy, which is horseback riding, because it works to strengthen the core.   I would love to get Leah on a horse, and I think she would go crazy for it.  I love that it could be another thing we would be able to do for her.

I've talked about a bunch of really cool pieces of equipment for her, so I must get pictures up of them.  Check back in a few days and hopefully I'll have my act together and show off her awesome new wheels!