Guess What This Is

I'm sorry this isn't going to be the post you were hoping for. I've got a ton of great party pictures to share but my memory card is currently holding 14GB (including video footage) and even after deleting about 1,000 pictures over the past 2 days I have a mere 3GB free space (out of 918GB). I am eager to share them, reallllly, so I promise I'll get them up as soon as I can get my IT guy home to work on it (husband Steve).

Do you follow the NieNie Dialogues? I do. I always look forward to her posts when I open up my Blogger dashboard. She also writes a column called Nie Asks on BlogHer. And if you haven't you should read her book, Heaven Is Here. It's great. It and Wonder are the only books I made the time to read last year. (Except Special Needs books for Ainsley of course.) Recently Stephanie asked which picture do people NEED her to see?  It gives me an excuse to post this picture, which I've had  for well over a month but could never quite figure out a way to work it neatly into a post.

First I'm going to share the picture and I want you to guess what it is you are looking at and why I think it is so amusing.

Ready? Here it is:

Okay, now what is it?

 

Yes it's a toy. But that's not specific enough.

 

Do you give up?

 

Here's a hint: You'd have to have a young son to have any clue what-so-ever. And he would have to like video games (that's a given though isn't it?).

 

The real question is not so much what this is but what it represents and why I laugh every time I see it.

 

And it just goes to show that Ainsley watches us carefully and notices an awful lot. And that she really wants to do the things she sees us doing.

 

So what it is: is a Skylander portal. Adrian got it for Christmas from Santa. It's part of a video game (for Wii or PlayStation). The way it works is that you buy figures and place them on the portal to unlock the characters and play them in the game. The more figures you have the more characters you can play. (Marketing genius for sure.)

 

You might be saying "But hey wait a minute! That looks like Jack-Jack from The Incredibles and SlinkyDog from Toy Story." And you would be right.

 

We have a giant basket of animated movie characters in our TV room. Ainsley loves to play with them. I guess after watching Adrian place his Skylanders characters on the portal (for many many hours during Christmas break) she decided to do the same, but with her movie figures.  When I spied them on the portal I laughed out loud. I'm so glad saw it and snapped a picture. It still makes me laugh every time I see it.

 

Now if only it worked that way. I'd love to see a giant Jack-Jack invade the Skylanders game.

 

You never know what that Ainsley is going to do. She keeps me on my toes.

Wonder and My Friend Christy

Having a medically complex kid with special needs is hard. Really hard. Almost everyone know a child with some special needs but few people know a child with many special needs and a tracheostomy.*

I tell people all the time how much support I've gained from the parents of the Tracheostomy.com forum over the years. Our kids have a huge range of abilities and conditions.  But through the forum I have found parents who I can relate to. I think there is great comfort in feeling understood. Especially when you are going through something that you think other people just can't understand. Even though it is true we all have difficulties in our lives it is comforting to find people who are going through something similar. Somehow it gives us strength, I think, to know we aren't the only ones facing whatever that difficult thing is.

That is why my friendship with my dear friend Christy means so much to me, even though we've never met face to face. She is AMAZING and so is her daughter HARLIE. She has been through SO MUCH. They are both fighters and live full rich lives despite the difficulties that Harlie's medical conditions cause. It happens that her daughter is also a craniofacial patient like Ainsley. Our children are very different but there are enough commonalities that Christy and I really understand what each other are going through as parents of these highly demanding children.

We read each others blogs and talk on the phone periodically. After a post she'd written about a biting remark a kid at school made regarding Harlie I recommended that she read the book Wonder by R.J. Palacio, which she did awhile ago. For parents of craiofacial kids this book stirs up some very difficult emotions. Her son recently started reading it too (It is highly recommended for grade schoolers. Both my kids have read it. But it is a great read for adults too.) and she posted a review of it on her blog today. I would love for you to read her post, click here to go to it.  In her post is a particularly poignant excerpt from the book. It relates to siblings. In recent blog posts I said this:

I feel like Evie and Adrian get shortchanged. (Sometimes I cry as I tuck them into bed when yet another day has gone by that I feel Ainsley got the bulk of my attention. Though it's just as big, if not bigger problem, that my husband works such long hours.) 

and:  

My greatest accomplishments and my greatest failings are all wrapped up in this thing called Motherhood.

I know those statements may sound dramatic but they speak the truth about how I feel as I try to keep things in balance for our family. Having a special sister like Ainsley is very demanding, even though we love her so much, and it is hard on the siblings. I think the excerpt quoted in Christy's post really explains it so well.

All humans want to feel that they "fit in". When your physical appearance is different that can be difficult to do. Many different people face this issue on different levels. Society impresses the idea on us that a certain physical ideal is most valuable. We all fall into this false trap because we want to be valued. Even those of us who are lucky enough to fit into the "normal" category of appearance still have things we hate about our own appearance. What a shame. The truth is that when you truly love someone their appearance is of little consequence.

Even if you don't know someone with a craniofacial condition, we all can relate to the desire to fit in. That is why I think this book is a good read for EVERYONE. My hope is that this book builds compassion toward people with craniofacial conditions and all people that look physically different. I hope you will read the book or at least read Christy's post.  Have a great rest of your week!

*P.S. I wanted to point out that in the book it is mentioned that the main character Augie had a tracheostomy when he was younger.

My Baby Then and Now

Today at 7:20 pm I will officially have survived 12 years of parenting. It is joyous, it is tiring, it is a million mundane moments punctuated by moments that I'll never forget. I remember the feeling of anticipation as I gazed down at my huge pregnant belly and looked at the beautiful snow falling outside my window. The world was quiet and still. I knew change was coming but really had no idea just how much my life would change in a few short hours. I could never have imagined all that the next twelve years would have in store for me. Being a parent is so much more than I ever thought prior to that moment when I became one nearly 12 years ago.   My greatest accomplishments and my greatest failings are all wrapped up in this thing called Motherhood.

I've written about it in the past so I won't write too much today because I have other things to do, like take the kids out bike riding because Evie got a new bicycle for her birthday. (Ainsley in her walker, we're still raising funds and planning to get her a trike in the spring). She is getting so tall that we actually bought her an adult bike for her birthday so she can keep it for the rest of her life! Crazy is what that is! If there was a pause button for life I would use it right now and keep her this age for awhile longer. The changes that are coming are coming fast. She is so beautiful right now and even though I know she will be a strong, caring, creative, amazing (& beautiful) woman one day, a part of me wants her to remain my baby forever.

My baby then.

 

And now.

 

She's wanted to be eleven, she said, "for her whole life" because in the Harry Potter books Harry is 11 when he goes off to Hogwarts. She was so sad about turning 12 because it meant not getting to go to Hogwarts herself at age 11, that I promised her we'd do a photo shoot of her in her HP gear while she was still 11 as a way to hold onto that. I got some great shots but will just share one right now. (My computer is still teetering on the brink of being overstuffed and it makes blogging difficult. I had Valentine's photos I wanted to share. You should have seen Ainley playing charades it was the cutest thing! Oh our nutty life. Steve is working on a solution, but he needs some time at home. Hopefully his work schedule will improve drastically by the end of February. Even I'm tired of hearing myself whine about it. But I digress...) I have done a lot of crazy things because of this girl I love so much. She is creative too and together we are dangerous.  Who knows, maybe some day we'll become mother daughter party planners.  She is having a Red Carpet sleep over party this weekend and it's going to be fabulous! Likely I won't have a chance to post again until it's over. Have a great week!

Communication, Eating & Potty Training

Remember I promised proud moments of Ainsley too after this and this post? Well I'm going to try my best. I've got dinner in the oven and Ainsley is watching Pingu. Have you seen that show? My brain can't think with it jabbering in the background. It's amazing how much can be communicated without words(the show talks in Penguin language). Still, body language can only get you so far and real words are useful. In some ways my life is like trying to interpret a Pingu episode. It isn't easy to have a child who can't communicate with words. Seriously. Try it. Ask your child (or someone close to you) to not speak and it won't take long before you see how challenging it is.

We've been working on alternative modes of communication since Ainsley was a baby. Sign language, we tried PECS cards, and then we moved from a simple button to more and more complex electronic communication systems. There was a time when Ainsley could hardly push a button. Even now there are times that her hands aren't very steady. I think it's an effect from her cerebellum malformation that will likely always be there. It requires some concentration on her part. Some times of the day she does better with her communication device than others.

Despite the physical, the real obstacle we've faced, I believe, has been cognitive. She just wasn't "getting it". This is a common problem with Ainsley. She is quite smart in certain ways. That can be confusing to people who work with her (like therapists, teachers and even family and friends). We work at something but the progress can be so slow and it really seems like she should be able to do it (whatever the it is).  I work with Ainsley on so many different areas, have for many years. Even I often don't understand why the progress isn't faster and I know how much effort I'm putting in.

I think it's kind of like trying to teach a 3 year old to write. They aren't ready. Some days they hold the pencil well and can form form letters. On those days so you think they can do it, other days they can't even seem to hold the pencil and letters they've written in the past may be written backward or they can't remember how to make certain letters. In those moments it's obvious the child is just not ready for fluent writing like they are ate age 5 when they get to Kindergarten. The difficulty is that with a developmentally delayed child, you don't know when the "right moment" is.  You can't use normal developmental stages as a guide. There is no manual. It can be very frustrating.

Sometimes it takes finally getting to "the right moment" to see that all the previous moments were "not right". I see that in so many different areas with Ainsley. The three I want to mention today are communication, eating and potty training.

Ainsley has been taking her NovaChat 7 to school for the last couple weeks, because I believed we are at that moment.....and yet. When I sat down to video tape her using her device for this post she had a difficult time. Unfortunately I didn't get all the videos I'd like to share. I'll have to post those another time so they are all in one place for the people who read my blog whose children use AACs.

On the positive side, a very proud moment came last week when after school Ainsley brought me her communication device which, she'd pulled out of her backpack, and asked me (with sign) to help her open the bag so she could get it out.  Then she used the device to tell me that she wanted (tortilla)chips for her snack. She sat down and ate them and then used the device to ask for yogurt which she also ate! It's a HUGE step to seek the device out when it isn't around to use it to communicate a full desire like that. It's empowering and likely to encourage further use which is what we want. Until she has a voice of her own, this IS her voice, and we are trying to give her 24/7 access as much as that is possible.

Look how pleased she is with herself!

 

In addition we've been using the device when I work on feeding with her after dinner. The page has words that describe food. It's been helpful. She can tell me how it tastes, if she likes the food or not, if it needs to be warmed up, she wants a drink, or she is full.

 

I've been trying to puree the table food that she doesn't eat at dinner. I'm getting better at making it palatable. Mostly by using water instead of milk to thin it and adding additional ingredients to round out the taste of the mix even it has less calories. This was chicken in mushroom sauce, mixed wild rice, broccoli and cauliflower.

 

This was pizza with some added pizza sauce and cheese.

 

She will now use her communication device to ask me to warm up the food if it gets too cool. It takes her a long time to eat so often we have to rewarm it several times.  It's so helpful that she can now communicate this. She is more likely to gag if the food is too cold.

The feeding is going well but it takes a lot of time. Time that I'd rather be doing something else. I feel like Evie and Adrian get shortchanged. (Sometimes I cry as I tuck them into bed when yet another day has gone by that I feel Ainsley got the bulk of my attention. Though it's just as big, if not bigger problem, that my husband works such long hours.) I always hope that the work I do on skills will pay off and eventually lead to more free time. My goal is to eventually be able to stop tube feedings, or at least cut back to one tube feeding per day (plus water to maintain proper hydration). It will take a lot of effort to get there, but hopefully it will be worth it in the end.  Similar to how it's been with.....

 

Potty training. Another area that I've spent countless hours working on in the past with little results. Near the end of 2012 I started to sense that it was the "right time" and she was really ready. I blogged about this in January, that we made the switch to training underwear. I'm happy to report that she's still in them during the day, every day. Not only that, a couple nights ago she got up from the dinner table (I was giving her a chance to eat the puree by herself before finishing spoon feeding her myself) and crawled into the TV room to sign that she wanted me to take her to the potty. Accidents have become less frequent. SHE IS DOING IT! On Valentine's Day it will have been an ENTIRE MONTH in underwear and I think that will make it official THAT SHE IS TRULY POTTY TRAINED!

 

Speaking of Valentine's Day have a good one! I hope you are sharing the day with those you love.

Basketball

This is going to have to be a quickish post since I'm in the midst of planning Evie's 12th birthday party and need to head into Seattle before the kids come home on the bus. I promised some more proud moments in my last post. I have several to share of Ainsley, perhaps I'll get to it this weekend.

Adrian started playing sports around the time we moved. That is partially a coincidence. Ainsley's early years were difficult and committing to team sports when you have a child who is in and out of the hospital for surgeries every few months would have been "too much". Plus aside from the regular mobility issues we have there were a couple times when Ainsley was in a spica cast followed by a brace. Taking her anywhere during those periods was quite difficult. It is easier now that I have a garage I can park in. It makes it easier to load Ainsley and all her gear, including the wheelchair, into the car. It used to be such a pain when we had a shared driveway. Driving and parking are easier than in the city.

It attracts a lot of attention to show up to a sporting event with a child in a wheelchair, who can't walk to the bleachers. When Ainsley is even a little sick I stay home with her. So I missed Adrian's first couple basketball games for that reason. Unfortunately he made his first score when I wasn't there! He was so proud, and so were we. Luckily Evie got it on video. I wanted to post it but my computer is too low on memory still.  On 2/2 we packed Ainsley up and took her with us to Adrian's game.  It can be a bit tiresome to keep her safe as she tries to stand up over and over. But I she's part of the family and it's good to do these things together. She actually really likes to go and watch. It's cute, she almost always asks (without words) to join in the game. She doesn't really understand why she can't participate.

I've blogged about this in the past. Since Adrian is new to sports it has been a learning experience. He had a hard time in the beginning. If he didn't do well he would storm off and sulk, that first season. We had to threaten to pull him out many times. It was frustrating especially considering the extra effort it takes for me to get him to practices because of Ainsley. And to games due to Steve's busy work schedule. In addition I really do have a lot of additional demands on my time, so I really do consider extra-curricular activities to be a privilege that is earned. This year I've seen a change in his attitude that comes from experience (and maybe age). He's learning that to be good at something you need to be committed and practice, and that when you don't do as well as you'd like, you pick yourself up and try again. Those are great life lessons.

I'm not a sports fan. And I'm not a particularly competitive person. I always feel bad when someone has to lose. But I see the value in learning to be part of a team. And boys likes sports so it's a great way for him to connect with other boys.  As long as Adrian wants to play sports I will try to support him. Adrian really likes to win. And last year his basketball team lost every game until the very last one of the season. Some parents get really upset about such things, but to me it really is more about learning than winning.  But......

This year he has great coaches, who have done a lot of work developing plays with catchy names and they call them out during the games.  The kids work well as a team and that makes all the difference. Instead of the best players being ball hogs, the best players on this team pass the ball to the other players, even the "worst" players on the team.  It's more fun for everyone and they are WINNING. In fact they are undefeated. That is a new experience for us. 

The boys hustling down the court.

Adrian making it hard on the yellow team. Adrian has been called, on multiple occasions this year, the best defender on the team. Although he doesn't score much(yet), he does a lot to make it hard for the other teams to score. He is getting to play a lot more. He's enjoying being on the team. We are really proud of how hard he is working and how much he's grown.

 

Adrian taking a shot.

 

Another score for us!

 

Adrian defending.

I truly never thought I'd see a final score like that. EVER.

Good team work!

The expression on the boy's face who is high-fiveing Adrian cracks me up. I have to wonder if Adrian was defending against him during the game.

 

Finally Ainsley gets the ball. She is SO HAPPY. I really love this girl!

 

Happy Friday and have a great weekend!  (We will have our usual Friday family movie/pizza night, basketball on Saturday (Steve will come home from work for a few hours.) and then family time on Sunday.)  I started sending Ainsley's NovaChat communication device to school this week. I hope to get some video of the vocabs to post over the weekend. So hopefully I can post that next week.

Dance

We had a busy weekend last weekend so I'm looking forward to having a bit less going on this weekend. I'd have posted sooner, but my computer is dangerously close to being out of memory (a terabyte none the less) and I didn't have enough space to convert my files so I could post them. Let's face it, a blog post is no good without photos. 

 

Getting back to the weekend: Last Friday Evie went to an after school 80's theme school dance, at the same time Ainsley had therapy and then Adrian had movie night at school. The next day Adrian had a basketball game, and Evie had her Winter dance recital.  We'd arranged months before for my sister Sheryl to provide respite so we could enjoy the show. (Ainsley has a hard time paying attention for 2 hours in the dark.) I always feel a little bit torn about leaving her at home at times like this but sometimes it's really for the best. Then a week or so beforehand we were told that Adrian's baseball tryouts were scheduled for the exact same time, so now he couldn't go and we had quite a dilemma. We were hoping he could go with a friend but that didn't work out. A big shout of thanks goes out to Grandpa Tom for happily helping us out by taking Adrian. And of course to my sister Sheryl for being the one person to provide respite care for Ainsley (and be there to watch Adrian too).

 

I love dance. I wanted to be a ballerina when I was little. And during High School, when times were tough at home, my escape was to go out dancing. I went dancing a lot. So naturally I always look forward to Evie's dance recitals. I'm really proud of her. It's been a big commitment taking her to dance class for the past 9 years. Seeing her up on stage is the ultimate payoff (though not the reason I do it).  This year her class performed a dark swan inspired piece. The girls looked so great up on stage in their feathered costumes (Though I was disappointed we couldn't see Evie for the first half of the dance because of the choreography.) During the second half I was able to get a few great shots to share. Always the photographer, I'm torn between watching and capturing these precious moments.

 

 

 

 

 

I still get to watch so I guess it's worth it since pictures last a lifetime and my memory is terrible. 

 

The studio has a special needs dance class and honestly their performance is one of my favorites.

 

 I think it takes guts to get out on stage in front of an audience. I love that these kids (most are young enough to still qualify.) do it and have such a good time. Each one got to break out for a short bit and perform "their moves" solo for 15 seconds. It was awesome!

 

Check it out, one of them was break dancing! How awesome is that? Can you break dance? I can't!!!

 

There have been a few times that I have talked with a new parent of a child with Down Syndrome. Like when any child is born with any kind of difference there is a period of grief and devastation, of course. But I have told these parents that it really was going to be okay. I was sure and I just wanted them to know. And I believe I am right, and hope that these parents all come to see it that way.

I believe because I had an uncle, Kenny (Kenneth later in life when he decided it was more mature sounding than Kenny) with Down Syndrome and he lived a really full rich life with a lot of friends and a family who loved him. He loved McDonalds, ketchup, bowling (was even on a league) and Elvis Presley. He had some moves. (I'd have loved to see him on stage.) He had a job at the NW Center for the Retarded (For those who of you who hate the R word it was the organization's name until recently. Watch the video on the NW Center page to learn how they were responsible for bringing the right to a public education to ALL American children.) and he would go there on the Metro bus. He had more than a few "girlfriends" in his lifetime. He remembered everyone's birthdays and had a funny habit of wrapping up his personal belongings to give as gifts. When he passed away there were hundreds of people at his funeral. Really isn't that what we all want for our kids? That they are happy, live a life that is meaningful to them and that they experience love?

To be perfectly honest I am a bit envious of the parents of kids with Down Syndrome. People know what it is, there is a large community of support for both the children and the parents. And the outcomes are quite good really. The truth is there are a great many conditions that are far worse to have. Some end in premature death, others with long term suffering, and others leave the child with far fewer life skills than kids with DS.

And that is one of the reasons I secretly bawl my eyes out in the dark every time I watch these kids perform. Because no matter how many hours I work with Ainsley I don't know if she will ever be able to walk independently. I don't know if she'll speak. I don't know if she'll eat. I don't know if she'll read. Have a job. Have friends. I certainly don't know if she'll ever dance on stage but I do know that I have hope...... And if she ever does it will be the proudest day of my life. I am proud of each and every one of those kids almost like they are my own.

My sadness runs deep during such moments but thankfully they are fleeting because I also know, truly that despite Ainsley's developmental delays we are really lucky. And I mean it.  I know that there are many parents out there who look at Ainsley and wish their child could do the things she can do. It's all about perspective. No matter your life circumstances things could be better, but they really could also be worse.

Of course I am also SO proud of this beautiful girl who I am so lucky to also call my own.

She is turning 12 in a few weeks and we are in the midst of planning a "Red Carpet Sleepover Party." Her last year before becoming a teenager. Sniff, sniff. It's going to be a fabulous party. So look for pictures of that toward the end of February. 

 

Also I have proud moments to share of Adrian and Ainsley (hints: basketball and communication), coming in posts this week. Being a mom isn't always easy, in fact sometimes it's damn hard, but I love it. I consider it my life work. Even if some days I get a little down I really know I'm so lucky to have 3 beautiful kids that I am SO proud to call mine.