Wednesday, July 28, 2010

Wordless Wednesday

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

Tuesday, July 27, 2010


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!

Monday, July 26, 2010

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.

Wednesday, July 21, 2010

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.

Saturday, July 17, 2010

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!

Thursday, July 15, 2010

History of the Disability Movement - Partners Meeting 1

I mentioned before about the Partners in Policymaking program that Chris and I are participating in this year. It is eye-opening to us and really grounding us in what we want for our family and how to make it happen. I encourage everyone who has a disability or a child with a disability to find out if your state sponsors this program and enroll. It will change your life!

Ok, that is my plug for this program and now I am going to do a series of posts on key learnings from the Partners meetings. This entry will be what we learned in the first meeting which focused on the History of the Disability Movement. We had Guy Caruso and Colleen Wieck (the creator of the Partners in Policymaking program) as guest speakers and they were captivating. I sometimes think history lessons can be a bit dry but this session was anything but dry.

Where to begin......

Whew! This session really lit a fire in my belly. The way people with disabilities were treated in the no-so-distant past made me sick to my stomach - literally!
  • Disabled people have been dehumanized, devalued and neglected for most of history. Typical life experiences of people with disabilities is - devalued by society, put into negative social roles, rejected....segregated....and congregated, marked and labeled in negative ways and oppressed....punished.....even physically hurt.
  • As far back as in ancient Greece, infants with some imperfection were left outside to die
  • In the 1800s in America there was a rise in the use of "asylums", which were institutions where people with disabilities were kept in cages, closets, cellars, stalls, pens! Chained, naked, beaten with rods and lashed into obedience. There was a photo essay on the deplorable conditions the children and adults lived in titled Christmas in Purgatory. The images and descriptions of the living conditions would make you sick. I can't even imagine how those parents felt when the learned what was happening to their children.
  • Late 1880s to early 1900s there was a movement to prevent the birth of those with disablities and we saw forced sterilization and the rise of the Eugenics Movement (Breeding for improving genetics). By 1933, 26 states had sterilization laws inspired by eugenics. This movement fell out of favor after Nazi Germany
  • 1950s saw the rise of the parents movement. Parents started to question the "experts" when they said nothing could be done for your child and they should be put away. The parents banded together and started to advocate for laws that improve education, rehabilitation and civil rights for their children with disabilities. By 1950 there were 88 local groups in 19 different states and they went by the name National Association of Parents and Friends of Mentally Retarded Children and are presently known as The ARC.
  • In the 1960s some money was designated for services for the disabled when JFK acknowledged his sister Rosemary.
  • In the 1970s deinstitutionalization began and the focus was put on the creation of community services. This was done largely in part from the influence of Wolf Wolfensberger who was an incredible advocate for the disabled. He was influenced by the inclusive society in Scandinavia and wondered why we couldn't be more inclusive in the USA and set out to change our policy.
Ok, let me take just a minute and say that I was born in the 70s. This is NOT ancient history. That people were treated this way in my lifetime still takes my breath away. Additionally, there are STILL institutions in existence today. We even learned of at least 1 lawsuit from this year - 2010 - about people being kept in shackles in institutions! We still have a LONG way to go for people of all abilities to be included properly in society, but there is hope. And the parents movement was successful in making some major changes and laid a solid foundation for our generation to continue to Disability Movement and fight for the rights of our loved ones.

Parents drove change. The Civil Rights movement paved the way for the Disability Movement and the Disability Movement leaders worked with the Civil Rights leaders to start making changes.
  • In 1975 the Individuals with Disabilities Education Act (IDEA) was passed. This is the first major legislation to require all school districts to develop and provide a free and appropriate public education (FAPE) for all children and youth with disabilities. Prior to this act, children with an IQ lower than 55 were not allowed to attend public schools.
  • People with disabilities started to move into group homes and attend special education classes (more on each of these topics later in the series)
  • Ed Roberts founded the Independent Living Movement
  • 1990 the Americans with Disabilities Act (ADA) was passed which prohibits disability discrimination by public entities. This is one of the most significant civil rights documents of the 20th Century!
  • 1998 Assistive Technology Act passed.
Now, that is a lot to digest. We spent 2 days on this topic and I know I'm not doing it justice in this one post but hope that it brings the Disability Movement and the timing of it to the forefront of your mind.

I leave you with this quote from Ed Roberts -

Disability is an equal opportunity club and any one of us can join on any given day.

Wednesday, July 14, 2010

Phillies win the game!

July 10, 2010

Our first Phillies game as a family and we had so much fun we are already looking forward to the next one! The Phils played the Cincinnati Reds and we won it in the bottom of the 11th inning with a final score of 0-1. Julia was so relaxed for the whole game secure in the knowledge that the Philly Phanatic would not come over to our seats, although she kept a close eye on him everytime he made an appearance. Emma was energized with the sold out crowd. We sat near the bull pen and Jamie Moyer threw Emma a ball that she shared with Julia. We finally left the stadium a little before 11pm and the girls had smiles on their faces when they fell asleep in the car on the way home. Oh Happy Day!

Thursday, July 8, 2010

Can you give us a Yes or No?

Emma had an apt. with the Augmentative Communication (AC) group at the hospital in April (Good Friday, to be exact!) and I've followed through with a few of the suggestions. One main suggestion that I've sort of been on again, off again focusing on is giving Emma a way to express Yes and No. The reason I'm so wishy washy on this is that it's HARD. Emma isn't all that interested in learning Yes and No and the way we were teaching it to her - eyes up to say yes, shake head for no - didn't seem to capture her interest at all and so I wound up exhausted by a lot of the Yes No teaching efforts and pretty much gave it a rest for a while.

But, we really want to reduce the frustration Emma has in communication until she starts talking and I think a Yes No response is a great start and I know that we really need to bring our AC efforts up a level. To do this without losing our sanity and buying loads of one function AC equipment we decided to get an iPad. Truth is, I've wanted to get one for Emma ever since the announcement of the iPad launch but we wanted to wait for the 1st gen. kinks to get worked out and buy one next year. You know, we wanted to be a bit more practical than rushing out and buying the iPad right away.

And then we came to a realization.

As we were waiting and being practical time was slipping away from us. Time that we could use to get Emma up and running with a communication system that she responds to - she loves electronics, switches not so much! - and will help reduce her frustration on our not-always-so-accurate guessing what she is trying to tell us. So, we decided to just take the plunge and get her an iPad since there are so many great AC apps available for it. Once we made the decision I was ready to go full force and we set out to the Apple store for a family outing only to come out empty handed. Apparently everyone wants an iPad so they were sold out and so I ordered it online and had to wait.......for a couple of weeks to get it. I wish I could say I waited patiently, but Chris would call my bluff for that statement!

The iPad finally arrived last night and I got it all set up for Emma. I bought the Answers: Yes No application from the iTunes store and thought this is just what I needed to help Emma learn a Yes and No response. This morning we started out with the Yes No app by asking Emma a couple of questions. She told me:
  • YES she was happy to see Courtney, the babysitter, this morning
  • No she did not enjoy her PT session at the hospital
  • Yes she wanted to go home and play with Julia
The great thing about this app is that it is EASY to use and implement. Emma is interested in using the iPad and selecting her choice. So, we incorporated it into her speech therapy this morning. She independently chose a Yes No response 3 times and needed hand over hand assistance 3 times. This is and INCREDIBLE response from Emma. My previous attempts at Yes No responses from her would maybe, just maybe have her respond to me once.

Courtney used the Yes No to ask if Emma was done eating and wanted her bottle and also to ask her if she was ready for her nap. She was clearly making a choice and happy that she was communicating it. This evening we asked Emma if she was done eating and if she wanted her bottle. She was a bit more tired but still made a choice.

ANYONE can do this with Emma. It's easy and almost effortless on our part and it took me less than a minute to show it to Courtney and her therapist. That alone is priceless to me!

We have a lot of other apps on the iPad that we can use with Emma. Many of them reinforce the auditory input she needs. She really seems to love everything it does including watching home videos and reading Dr. Seuss books, but for now we have decided to use the iPad mostly for the Yes No application before we move on to all the other fun apps. We don't want to throw too much at her all at once.

After Emma masters the Yes No, we think the next step would be to introduce the Proloquo2go application.

I'm really excited about Emma's response to the iPad so far!

Tuesday, July 6, 2010

Summer Fun!

Summer is in full force with this record setting heat wave! Somehow June seemed to slip by us so quickly and we didn't want the same thing to happen to July so we took a mini-vacation to Lancaster County, PA from July 1 -2.

Lancaster County, PA is pretty much an hour up the road from us so we could easily do it as a day trip, but we decided that we wanted a leisurly pace so we booked a hotel room for the night. The first day we visited the Strasburg Railroad and booked passage on an Open Air ride. We thought it would be a fun activity for the girls, but we were not prepared for the SHEER JOY that emanated from Emma for the entire ride. Julia loved the ride and brought her doll along for the experience and Emma was beside herself with excitement and we had a hard time holding her in one spot and wound up shuffling her around for the ride so she could see everything at all angles. I think we'll have to take another trip on the RR in the Fall since the girls loved it so much and the ride will be gorgeous when the leaves change colors.

After the RR, we stopped at the outlets and I popped into Pottery Barn to look around while Chris and the girls played in the playground right outside the store. Since we are trying to sell our house and are trying to minimize our "stuff" I didn't want to do much shopping but I do love to look around that store and think about what might look nice in whatever house we buy. Then we moved onto the hotel where we met up with the Nitka's. We were lucky to have Mary, my niece, join us for a few days of fun. We all went for a swim in the hotel pool and then went to Dutch Wonderland to buy tickets for the following day and spent about an hour in the park as a courtesy preview. The girls had a blast on a few rides and planned out what rides they wanted to go on the following day.

We spent all day Friday at the amusement park and the girls went on nearly every ride! We knew Julia and Mary would be great ride partners and were happy to see that Emma loved the rides just as much as they did. True to form, Emma had no fear of the rides and even enjoyed the roller coaster! This meant that Chris and I went on many of the rides as Emma's partner and she squealed with delight on all of them. Emma was given a wristband to allow her (and us, too!) to enter all the rides at the Exit without waiting in the Enter line. Boy, was that a great thing! It really saved our backs since it meant we didn't have to hold Emma to wait in the lines since you can't bring wheelchairs or strollers in the standard lines. Plus, we could go on a ride twice in a row without getting off and the girls really enjoyed that! We were thankful that the weather was a bit cooler that day - a rare day in the 80s instead of the 100s we are in now! - but we still hit the water park and had the most fun going down the waterslide tubes. Overall, Dutch Wonderland was a huge hit again this year and Julia is already planning our next visit.