Abilities Expo Boston! 9/20-22

Amazing stuff happening here at the Abilities Expo in Boston. They have these expos in major cities all across the US. Here is the link: http://www.abilitiesexpo.com/boston/ And of course we are interested in seeing this. Wheelchair Dancing!

Inspiring innovation

Irish Firsts or 3 Beautiful Firsts

1. Ellie at Nomad's

1.  Figuring out that wheelchair vans with ramps and tie downs are available - and easily so  - in Dublin, Ireland. Result: no more extra lifting of Ellie and schlepping of car seats! Woot and dah...

2.  First time finding the beach wheelchair and using it!  We were all jet lagged from returning from Ireland last Friday. So on Sunday morning, being up very early we got to the beach before 9am (it's an hour and 30 minutes away so that is saying something for us).  As a result there was a beach wheelchair available. AND the head supervisor of the beach was insistent we use it (when she saw us gearing up to drag Ellie in her wheelchair across the beach).  She gave me her number to call her next time so even if one was not there they would find one.   Ellie did great too. I was very worried about her stability because it only had a waist belt and no shoulder straps and the beach is rough going. But she sat criss cross style and was very stable.  Big victory for us and our backs and Ellie. We used it to get her to the water as well.

2. Amazing salad from Rustic Stone

3.  Overnight away from Ellie.  And guess what? Everyone was completely fine at the end of the day and next day. It was really, really nice to have time with Dave and break that barrier of our fear of leaving her.  That said, we left her with the NICU nurse who cares for Ellie when she's not doing her day job so Ellie was in great hands and loved having a girls night out away from mom and dad.

It's been a good couple of weeks. 

Pictures from the top to bottom:

1. Ellie in Nomad's just off Grafton Street in Dublin's City Center. The food is spectacular (they even had an amazing coconut Thai tofu entrée ) and the owner is lovely and made us feel right at home.

3. Dave and I on our overnight away.

2. The most amazing salad we had at Rustic Stone right of George's street. Such an amazing and wonderful food experience. Highly recommend both restaurants. 

Dublin rocks some amazing food. I was even able to get fresh squeezed green juice for Ellie at Cornucopia - which is a block up from Grafton street if you take a left after Brown Thomas.  The vegan food is great there too and the people are lovely. We ate there several times. 

3. Dave and I at our friend Anto's wedding on our overnight. 

4. The Harry Potter like and wonderful library at Trinity College. I highly recommend taking the tour which is very interesting and fun.  

5. Ellie and Dave at Bewley's which has the best atmosphere and cherry buns and cappuccinos. 

4. Library at Trinity

4. Library at Trinity College Dublin

5. Ellie and Dave at Bewley's - yum.

The Price of Admission

The weekend before last I met my two sisters in Washington D.C. for our first ever girls weekend away. I have been envious of Billie who does this from time to time with her friends. She has been such a great role model for me in terms of how to deal with all of this, times two no less, with grace and self care. So when my little sister suggested it, instead of feeling too guilty to go and too worried to leave Dave and Ellie on their own, I went. It was a milestone weekend on many levels and a healing thing between the sisters. Ellie also got even more attached to Dave and gave me the cold shoulder for more than one day....upon my return. But that is another story.

We went to the Natural History Museum looking for Ben Stiller, who sadly wasn't there though his dinosaur buddies were. I can't wait to take Dave and Ellie there. It is so clean and everything is completely accessible and viewable from wheelchair height. The Boston Science Museum which is not as clean or as accessible sure could take a leaf out of the Smithsonian's book!

One thing that really struck me was an installation of a Neanderthal male skeleton. It showed that he had a severe head injury. The back right side of his skull was bashed in. However, he lived many years beyond his injury and the notes on the installation said he was well taken care of by his Neanderthal mates. This was some proof my heart needed. Amy Mullins in this wonderful talk references that Neanderthals would carry their wounded and disabled for many miles and kept them alive and with their groups. Here was proof of that. What does that say about their society? Life was tough back then to be sure and yet they took care and effort and scarce resources to keep their own together even after horrible injuries. What does it say about our society who for years locked similar individuals up in institutions and created an entire infrastructure that is less than accessible to all? The proof of Amy's reference gave me hope. So when I call this post "the price of admission" I am referring to all the things we do for Ellie and others do for her to help her be with us. A T-ball game complete with volunteers to help push the chairs and engage the kids. A room on the same floor as the major activities of the house so Ellie can always be with us and we with her. A $7,000 voice output device that MassHealth paid for so Ellie can talk to everyone because she can't make her mouth and vocal cords do her bidding in order to speak. It's the price of admission. I am happy to pay it. We have been very fortunate to have found advocates who work tirelessly to this end because in today's society there are many barriers. I was delighted to find evidence that in the distant past, there once was a society who happily paid it too.

This Sunday Ellie played her second T-ball game of the season and got MVP with 6 runs and a positive attitude...kind of. She didn't like the wind or the slow pace of the game. She wanted to be slightly more hands on - like literally get to touch the baseball and throw it. Her favorite thing is batting and then "running" to the bases. It's all go, go, go! We just received her voice output device and I think I need to program it for T-ball to say things like: "Batter, Batter!" and "Let's get the ball!" and "Go, go, go!" This year so far the game was moving a bit too slowly for her. We recently saw Ellie's eight year old cousin who also experiences sudden bouts of boredom. It's always awesome to see my niece, who I adore because she's great, and she affords me the "typical" kid comparison (though truly I think she is exceptional and words are so darn limited - but I hope you know what I mean) always teaches me loads. Turns out eight year olds have low boredom threshholds and are given to spontaneous bouts of sulking turn whining...;-) Ellie, engaging in said behavior, in this sense is acting her age. Ya gotta love that.

T-ball overall has been very, very good to Ellie and us. So far she has a glove signed by Ben Affleck and a ball signed by Big Pappy. Not bad for an 8 year old. The pictures are of said signed glove and Ellie celebrating a run with her two buddies. The volunteers from the high school leagues are awesome and Ellie gets a lot of attention. We get to watch and take pictures and cheer her on like mad! It feels as close as we are ever going to get to a typical outing and so it's a novel and fun because I get to chat with other moms and dads and no one pulls the pity face. We are all in the same boat and have an hour of little league T-ball like some many other parents. It's just that our hour is an unexpected gift due to the efforts of Marie Shea who started up the whole thing. Thank you Marie!

We are at the magical over 4o pound plus mark and have to quickly get our act together regarding home adaptations and a wheelchair van. I hate those words "wheelchair van". But nowadays they are not the hollowed out deathtraps they used to be. Turns out you can convert any minivan into a wheelchair van for about $15-30k and sometimes find a used one... see here. If that doesn't raise your blood pressure, then you can also figure in the cost of converting our back covered patio into a downstairs room for Ellie. A room that will fit her bed, wheelchair, and an adapted bathroom with a ceiling tract.

So it goes.

Today we met with a lady from an agency that helps parents navigate these expensive waters to raise funds and find the right people to help. It's a whole lot of help you have to get to do all of this. I am overwhelmed. Sometimes it's hard to ask for help. Edgar Schein's lastest book, Helping: How to offer, give, and receive help. goes into the differences between the helper and the helped. It's a good read on many levels especially in light of my career as an organizational psychologist on one side of the helping equation and my life on the other side of it as a parent of a quadriplegic kid.

To reframe, the good news is that Ellie continues to grow and develop. I kid you not when I tell you that in the first months of her life we counted her weight gain in grams. Grams. Do you realize how little that is?! Each gram she gained was an affirmation of life. One tiny bit of mass that was building up her tolerance to this physical world.

Last year she gained 10 pounds which is 4535.923 GRAMS!

In retrospect to have the issue that she is getting tall and heavy is a fantastic problem to have. A really great one. Once I get over the heart stopping cost of it all and go into creative problem solving mode I am sure between Dave and I and all this guidance we can work it out. The start of things is sometimes when they seem the most challenging. I know from my students that learning is hard and I now have to learn this whole new vista of conversion vans, home modification loans, door sizes for wheelchair access, side loading versus rear, etc. What is that new mantra everyone is saying, stay calm and carry on...yep, that's about right.

Those of you who are reading this, if you have direct experience, please weigh in on your thoughts regarding rear or side loading vans. Which do you prefer?

Stay tuned.

Different NOT Less

I have been thinking about this lately. It's been less in my face because Ellie is in a GREAT school and we are surrounded by people who are in the special needs community. We are lucky for all of this. But I think sometimes about how we will immerse ourselves in life even more. We are still somewhat isolated outside of school. It's much better since school, but still. One of the keys to our freedom (freedom being defined by me as access to community and all it has to offer) is Assistive Technology. We received a grant from the Gasperini Fund for some Assistive Technology but have not spent it yet because we are not sure what to buy.

It's hard because Ellie has motor disability. Her fine motor, is ok, very ok in that she can use her hands at all. She can operate her toys and her Weemote. She is having some success using my iPhone to swipe through pictures. The "tap" the screen part is more difficult, but I have not set my own phone to the accessibility settings yet. I am overwhelmed by all of this sometimes and frustrated. There is a huge smart board at Ellie's school - but she only gets to use it an hour per week. What I love about the iPhone is that we can instantly take pictures or videos of people and things that are meaningful to Ellie and use them to communicate and play.

Yesterday, Claire, left a comment on this post telling me about this app for the iPhone/iPod.

Voice4u.

Thanks to Yumi for inventing it. It is always disgusting to me and outright wrong how much the companies who make "assistive tech" charge. I have heard the argument that they have to charge more because there is such low demand. I think that argument is a lie. To have to pay $65 for one switch that probably costs the company $1.50 to make is price gauging at its worst. I appreciate the high tech environment and the freeware movement especially.

The problem in our life is NOT that Ellie has a disability, it's the lack of access. It truly is. A very smart Professor at the school I am working at now has termed this the "Social Model" of Disability.

Thank you Claire!! You have reminded me how much I love my blog readers and other bloggers and the access to the world of parents in my same situation struggling to figure out the same problems.

I am going to upload it and give it a try. Why, oh why does the iPod NOT have a cameral and video? I will hate it if the answer is pure marketing that has to do with ATT and not making a profit if people buy such an iPod instead of the iPhone and it's network.

Still the need to have to "tap" is a problem for Ellie. But for $29.99 I am ok with giving it a try and being Ellie's "remote" to help her do it. I am looking forward to the day when Ellie, using voice output or some other means can more easily tell me what's on her mind. She has been expressing herself so much more in the last 6 months. It's incredible and one of those corners she turns when we least expect it. Happy days.

Thanks to this blogger, Tammy, mom of Parker, for her blog as well. I will be adding it to my list.

Let me know if you try Voice4u and have any success.

Get Angry or Get Better?

Sometimes I chose the path of anger. That's right, chose. I don't buy it when people say, I couldn't help myself. You can always help yourself, even if it's just being able to control, monitor, or mitigate your inner state of consciousness. 

But sometimes it's hard. I find it hard at the end of Winter when Spring feels like it will never come and I am sleep deprived and overwhelmed by managing mine and Ellie's life. Three doctor's visits this week and a Baker's Cyst behind me knee are not helping...

I can also chose to learn from my anger and the difficult things that happen in life. I take that path just as much, probably more considering the big picture. Decide for yourself in reading my blog. I have been angry about Ellie's computer teacher making her use a head switch. If Ellie didn't have such great use of her hands I would be all for it. But head switch? On Ellie? Come on!!!  Ellie's head is the most difficult part of her body that she tries to control. When, oh when are you going to see my kid as she is, not as you would like her to be?  

Sigh.  See that? Up there is me giving in to anger.

Ann has reminded me that there are always two sides to every situation. I am not sure how to learn from this situation yet or what the other side is of Ellie's hands being totally written off and her being made to use a head switch. But I am going to start to look for it and try to understand as I have been but without the anger. Any suggestions from any readers will be appreciated. 

It's good to be reminded that everyone makes mistakes, not meaning to, and without malice and that they deserve compassion too. If everyone thought like Ann seems to, the world would be so much a better place. Thanks for setting such a great example of this principle in your post here!