Wordless Wednesday

Emma almost 1 and Emma almost 3.  Just look how quickly you are growing up my smiley little girl!

Sleepovers

The girls love visiting their cousins' house. There are always a lot of kids around, plenty of toys to play with, unsupervised walks around the block....you get the idea. It's the kind of environment in which children thrive.

Julia and Emma spent a few nights at their cousins' house last week while Chris and I went to our monthly Partners in Policymaking meeting. We planned to have Emma stay 3 days and Julia to stay a bit under a week so we picked Emma up on Saturday night and visited with Julia but didn't bring her home that day. Emma had a ball during her visit but I think she was about ready to come home. Julia stayed on and is having a blast and we will welcome her home with open arms tomorrow - I can't wait to give her a huge hug and a great big kiss!

We really miss Julia and the house is so much quieter without her here.

But...it was also nice to have some time alone with Emma and she sure did seem to love having Chris and me all to herself for the past few days. We rarely have only one child to care for and are astounded at how easy everything seems with only one little one to look after. Seriously. I didn't realize how much juggling we do on a daily basis when we are a family of four than when we are only three.

On Sunday we went to church and then ran quite a few errands as a family. We did some cleaning around the house and Emma enjoyed every bit of it. She has an *extreme* fondness for seeing people work and giggles like crazy while watching us work up a sweat. She had some chocolate snacks before bed time and went down late without much of a fight. Sometime during the night Emma worked her way into our bed (a common occurrence) and when my alarm went off in the morning Emma nuzzled in closer to me and I fell back to sleep so content snuggling with her.

I completely forgot about the 8:30am therapy appointment until the doorbell rang and I found Emma's OT ready for Emma's session. Oops. Not to worry, Emma woke up happy and well rested and ready to play. Since that was all we had planned for Monday we decided it would be fun to go to a movie and headed over to Toy Story 3 after a late morning breakfast. Emma was a bit hungry the last 15 minutes of the movie and I was really glad I had brought a bottle with me and she gulped it down while keeping her eyes glued to the screen. She loves going to the movies and there were a few previews that I think we'll go see together and the one I'm most excited for is Secretariat. I think she'll love it. We rounded out the early afternoon with a visit to the fish store (to get a bigger bowl and some decorations for our fish now that she has lasted 3 weeks without getting a trip down the toilet), dropping some housewares off at Goodwill and then home for a bite to eat before the afternoon nap.

Today was a bit busier with Speech therapy and Early Childhood Educator sessions in the morning, but we still managed to head over to the Y for a refreshing swim in the pool before lunch. It's challenging to take both girls on my own so we usually only swim when we can go as a family but today was beautiful and it was surprisingly easy for just the two of us to fit in an hour and a half at the pool before lunch and nap. Emma had an OT session after her nap and then ate a great dinner before we headed out for a bit of shopping while Chris cut the grass. We arrived home just in time to help rake the lawn and bin the excess grass and Emma was thrilled to watch us clean-up. I think it was the highlight of her day! Anyone who has any work to do and is less than thrilled about it should invite Emma over and her giggle will really make the work a lot less onerous. She finished off the night with a shower and some books and went to bed late again.

I think we managed to have as much fun around here as Julia did while hanging out with her cousins, but I know we're all looking forward to having Julia come home!

Americans with Disabilities Act celebrates 20th anniversary

It was 20 years ago today that President George Bush Sr. signed the ADA into law. This groundbreaking legislation gave people with disabilities full legal equality with their non-disabled countrymen.

The ADA is a civil rights law that prohibits discrimination solely on the basis of disability in employment, public services, and accommodations. It protects any individual with a physical or mental impairment that substantially limits one or more life activities. This year 54 million people - 19% of the population - has a disability and are helped by this law. I could do a dance I'm so happy that this law was passed!

What has this law changed? There is better accessible transportation options, wheelchair-accessible buses and curb cuts. There is access to sign language and printed materials for deaf individuals. There is Braille in public areas, on hotel doors and elevators. And, while the unemployment rate for individuals with disabilities is still a staggering 75%, there are more people with disabilities in the workforce today.

Many people have benefitted from this law including those who are not disabled at all. For example, curb cuts are great for mom with babies in strollers and for children riding bicycles on the sidewalks. Closed captioning is often used on tvs in gyms so the members can exercise and follow along with a show of their choosing. These are just a couple of examples of how inclusion often benefits everyone and not only the disabled individual.

I know not everyone is happy with the speed of progress since the ADA was passed and that we have more work to do, but for today I am celebrating the people who fought so hard to get this law passed and the progress we have made toward including people of all-abilities into every aspect our society.

So, what's wrong with her legs?

We are a very active family and are on the go a lot. I take pride in the fact that I've heard more than a couple of times from one of Emma's therapists that I bring her in too tired because we were out late the night before or up having a dance party and the like. We like to participate in our community and enjoy life. What can I say? I'm not about to compromise a childhood for a well-rested therapy session the next day!

Last week I had the girls at the Delaware Children's Museum. It's a fantastic new museum, very accessible and fun and we have a season pass so we go quite often. This week we went without meeting up with a bunch of friends and it was mostly just the three of us hanging out having fun. A boy came up to us and grabbed Emma's leg and tapped it and moved it a bit. Emma just looked at him and so did I since he wasn't doing anything in a mean way and I was giving him a bit of room before I demanded he take his hands off my daughter. Then he looked at me and asked me - "So, what's wrong with her legs anyway?"

I was a bit dumbfounded by this. I mean, Emma is in a wheelchair but I haven't really had people ask about it much. All our friends have pretty much known Emma all her life and this is just the way she is, so I haven't really developed a script to tell people when they ask. (Oh I have had people make comments in a not so nice way and I just ignore them.) This little guy was just quite curious and looking expectantly at me for an answer.

I thought a second or two and told him that there is nothing wrong with her legs, that this is just the way God made her. Then he said well there must be something wrong since she is in a wheelchair. And I said no, not wrong, this is just the way she was made. He thought about that a minute and said "Oh!" and sort of tapped her leg and gave her a hug and off he went. Later in the day a little girl about Emma's age asked me if she was a baby. I said, no, she's not a baby she is almost 3 years old. And then she asked me why she is in that (pointing to the wheelchair) and I told her that she needs to move around and this gets her around since she's not walking yet. Again, I was caught off guard so it took me a few moments to think of this response.

Her mom was nearby and told me her little girl didn't mean anything by calling Emma a baby and that she was sorry if I was offended. I told her I wasn't the least bit offended and she could ask whatever questions she wants. The mom and I proceeded to talk until the girls were done their art projects.

Since we will continue to be out and about, I'm sure we'll get many more of these questions so maybe it's about time I started to think up some good responses.

iPad - Week One Impressions

We've been using the iPad for a week now with great success. We are mostly using the Yes No program and a few games and books. We plan to introduce a more comprehensive communication program - Proloquo2go - soon. I am downloading that program today and will be learning how it works so I have it all set up how we want it before we introduce it to Emma.

I'm very happy with the way we are introducing the iPad to Emma. We are starting out simple and learning the best positions, adapatations, and type of interactions that make the iPad most useful for Emma.

For positioning, we've tested out various positions and found that Emma is most successful in making her choices when the iPad is positioned at an angle off to her right. This allows her right hand to easily choose between the Yes and No buttons and also to move through screens on her books and games. We also purchased an iPad cover that has multiple viewing angles built into the stand. It is working pretty good, but the iPad doesn't "catch" in the notches in the cover at the various viewing angles as much as I would like.

For adaptations, Emma sometimes wants to hit a button and her motor skills don't quite get her to that button without assistance. So, to make this easier for her, I purchased a different iPad cover that was ~$3 including the shipping on Amazon (reviews said it didn't fit the iPad great) and flipped it over so that the part that would cover the back was now covering the front. Then, I cut two square holes in it so that Emma could only see the Yes and No buttons. This way, when Emma is trying to select a choice she does not see the Options button which she loves to hit or the 1x/2x button which she hits a lot by mistake (moving these two buttons to the top of the screen is one of two requests I put into the developer!) since her motor skills have her going towards the bottom instead of the middle of the screen. The cut out gives a tactile feedback to Emma since it is raised from the screen and we have seen an improvement with using this adaptation for the Yes No program.

The types of interactions we've used the iPad for varied throughout the week. All of her therapists were so happy to have the Yes No and incorporated it into each of her sessions. Some examples of what Emma would respond to:

• Do you want to keep playing with the X,Y, Z toy - Yes and No were both answered depending on the toy and what she wanted at that time
• Someone asked Emma Do you have a brother - Emma said No
• Do you want to go home when at the playground - No
• When a therapy session was over - Do you want to continue playing with Therapist's Name Here - No. Do you want to go home - Yes.
• While at the Children's Museum I asked Emma if she was having fun - Yes. And, if she wanted to go home - No. For this one, I asked her this in the bathroom after I changed her diaper. She would not attend to the iPad when we were in the exhibits because there were loads of children running around. I don't blame her one bit for that!
• Showed her a cow and asked her if it was a sheep - No. Asked her if it was a cow - Yes. Her auditory verbal therapist did this for several items and Emma QUICKLY lost interest in that game - there was no What's in it for me for Emma so she moved on to a game. She just wanted to see how Emma would respond and she was 100% accurate in her responses. I don't think we'll be re-visiting this "game." :-)

The Yes No program is limiting our interactions with Emma to Yes and No responses, but it was a great way to start getting Emma familiar with the iPad and learning about positioning. We are now looking forward to incorporating the First Then Visual Schedule app that I downloaded along with adding the Proloquo2go program for more in depth conversations with Emma.

These are exciting times for us!