Aleena had a beautiful memorial on Monday morning. Thank you to the church, the speakers and everyone who attended. Tim Cavender created a heartfelt video that was played and we will be posting that for everyone soon, here and on facebook.
Memorial Service
Thank you all for your love and prayer over the last two days. We now have a memorial location and time. We will all gather at Bridge to Grace Church in Roswell on Monday the 10th at 11:00am. Any questions about the location or the memorial can be directed to John and Kari Albers at 770-641-8594.
Bridge to Grace Church http://www.b2gc.org/home
2385 Holcomb Bridge Road
Roswell GA
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Aleena
It is with profound sadness that we announce the passing of our beautiful daughter, Aleena Hope. Aleena fought every day of her life for the time she had, and she knew more than anyone the value and love of her friends. Thursday afternoon the fight became too much to bear and she is now in the arms of her Savior. This event was very sudden and has left us all unprepared. We are incredibly grateful to those of you that knew her and took the time to be part of her life.
We know Aleena has forever touched many lives other than our own, so we hope anyone who is able will join us to celebrate her life. Arrangements and services are still being figured out today. The memorial service is tentatively set for Monday.
In lieu of flowers donations can be made to the Hope and Light Foundation: www.hopeandlight.org
or to Miracle for Madison: http://www.miracleformadison.org/
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Disney Princess Mirror, Adapted
I have a great time switching Aleena’s toys. It’s something that I know makes her happy and it gives me the feeling I’m really doing something to make her life better. There are so many ways people have come up with to adapt toys, that I thought it would be fun to share what we did with Aleena’s princess mirror.
A word of warning before you try and adapt your own toys using this method, there is no guarantee of success. You have to go into it with the attitude that you might lose a toy or two on the operating table. Here is my simple list of things to expect if you decide to follow these instructions, or attempt this type of adaptation on any toy.
- Eventually you’ll send one of your child’s favorite toys to toy heaven, and not in good condition.
- You will burn yourself on a hot soldering iron.
- You will collect any number of microscopic cuts, pokes and scrapes from wire and metal.
- You will cause various wounds and accidents involving shocks, fire, poisonous smoke and general mayhem.
If all that sounds as much fun to you as it does to me then by all means give it a shot. You might find out you love doing it, and I know you’ll love seeing your child play with the toys you’ve adapted. Now, allow me to introduce the victim, the Disney Princess Deluxe Magic Mirror:
It lights up and says such wonderful phrases as “Your as pretty as a princess”, and “This certainly is a very magical mirror!”. Actually that’s all it says, but my daughter loves it, so we switch it.
The Tools:
- Hobby/jewelers screwdriver set
- 22 to 24 gauge stranded wire
- wire stripper
- flush cut wire snips
- soldering iron
- solder
- desoldering wick
- drill with 1/4″ and 1/8″ bit
- 1/8″ mono phone jack
- hot glue gun
The Steps:
1. Flip the mirror over on its face so you have access to the rear panel. Make sure you put the mirror on something that won’t scratch the front surface of the toy.
2. Remove the batteries.
3. Remove the screws holding the rear panel in place. There are 11 total: 9 short screws marked in red, and 2 long screws marked in blue. Screws love to roll around and hide so put them somewhere they can’t get away. Try to organize your screws so you can put them back in the correct places. You don’t want to mix up the screws for the PCB board with the screws for the rear panel
4. Carefully remove the rear panel so you have access to the PCB. Go slow, the existing wires are fragile and you don’t want them to break.
5. Remove the springs (3). Unscrew the PCB board by removing the two screws holding it in place. Carefully lift the board away from the mirror, remembering to be gentle with the existing wiring. Don’t lose the screws.
6. Remove the existing rubber switch by gently pulling at the corner until it pops out. Flip the PCB over so you have access to the printed circuit.
7. You will be adding two new wires to the PCB. Cut two new pieces of 22 to 24 gauge stranded wire, not solid core, and strip about .25 inch off each end so the copper is showing. You can buy wire at radio shack, but I have a lot of left over cat 5 computer cable around my house so I usually strip that down for switching.
Before you cut your wire, put a little thought into where the final switch jack is going to be located. You want to make sure you give yourself enough wire to reach from the PCB board to the jack. I put my mine at the top of the mirror, so my wires are not more than six inches long. In retrospect the switch jack would probably have been better placed on the side or bottom, which would have required a much longer cut of wire.
8. Ok, now the easy part is over. Fire up that soldering iron and get ready to do some damage. The two locations on the board we are going to solder are circled below in blue and orange. You can test these locations by inserting the batteries and touching each end of a single stripped wire to each connection point. If you do this, with the batteries in, you will cause the mirror to light up. Now, take the batteries back out.
The first thing we want to do is desolder the connection point marked UCC (blue circle). We will actually be sharing this connection point with the red wire coming from the battery box. If you really don’t like to desolder you can just solder your new wire on top of the existing solder, but I don’t usually do that. It makes a mess and sometimes breaks off.
There are a few methods to desolder and I won’t get into them here, you can find a lot of instruction online. A desoldering braid works fine for me.
Once you’ve desoldered the connection point you will have something that looks like this:
9. Now we solder our two new wires into our connection points.
Wire 1: Your desoldered point (blue circle) should be big enough to fit both the original red wire and one of your two new wires. Thread the stripped end of both wires back through the hole, back to front, and solder in place. Trim excess wire if necessary.
Wire 2: Thread the stripped end of wire two through the second connection point (orange circle). Solder in place, trim excess wire.
Your finished board should look like this in the front:
And this from the back:
10. We now have two new wires connected to the back of the board. Replace the rubber button to the back of the pcb board. You may have to pull it through from the front. I also had to cut the rubber just a little for the wire to fit right.
Now comes the moment of truth. The test. Replace the batteries and test the connections you’ve made by touching wire1 and wire2. If the mirror lights up when you touch the wires your good to go, the hard part is over. Now test the original switch by pressing the rubber button, it should work also. If everything is working, screw the PCB board back in place.
If the mirror does not light up when you test it, then you could have a tough road ahead. Start troubleshooting by rechecking all your connections and wires to make sure nothing has broken or come lose.
11. After celebrating a successful step 10, the next step is to get the wire from the PCB board to wherever you want the switch jack to be. Drill one hole using a 1/8 in bit through the housing that holds the PCB board. Then drill a second hole using a 1/4 in bit for the switch jack. Run your wire through the first 1/8 in hole.
12. Solder your two wires to your 1/8in phone jack. This will become your external switch port. Just like with the PCB board, thread your wire through the hole in the jack and solder in place. Trim excess wire with wire snips if necessary. 1/8 is a standard size for all switches, but if you want, you can plug your switch into the unwired jack to test the size.
13. Replace the batteries and test again. This time by plugging your switch into the jack and pressing your switch. If the mirror works congratulations, if not, start troubleshooting by rechecking all your connections.
14. Insert the jack through the 1/4 in hole and use the supplied nut and washer to secure it in place.
15. Next, arrange your new wiring so that it is secure and out of the way of any existing components that might pull, cut or damage all your hard work. I use a few drops of hot glue to help hold my new wiring securely in place. Add a few more drops of hot glue to the 1/8″ hole to keep the wire from accidentally pulling out. Remember the heart moves when someone presses it, make sure there is enough slack in the wire to account for that.
16. Almost done, just a few simple last steps. Replace the springs (3), and replace the rear panel and all the screws, 9 short 2 long.
17. Find a nice place to hang your new switch adapted Disney Princess Deluxe Magic Mirror
I hope this dispels some of the mystery and fear surrounding switch adapted toys. If anyone uses these instructions and is successful, let me know. If you accidentally burn your house down, I was never here.
American Girl Store
Aleena has had enough of American Girl
American Girl will always be a mystery to me. Maybe it’s the detailed clothes, the infinite tiny little accessories, the back stories, I’m not really sure but I do know that Aleena loves her A.G. dolls. She loves to have someone page through the store catalog, to have her mother help dress them, or to just lie next to them in bed while one of the many girl power themed books are read to her. I’ve even heard her trying to talk to one of them when no one was looking.
When Stephanie and I heard American Girl opened a store just north of us we knew it was a “must take” trip. The mere mention of an afternoon trip to the store would cause Aleena’s eyes to get wide and a vocal expression of excitement would burst from her mouth. We talked about it for months, about going to the store, making reservations for lunch and spending the day at the mall. Just a big girls day out with dad carrying all the bags. I have to admit, after all the planning I was getting excited too. This was obviously something Aleena wanted to do, and seeing her excited makes me excited. Unfortunately, no matter how much you plan, you never know how a trip with SMA is going to end up, and this was no exception. It happens a lot that day trips don’t turn out well for us, but it’s especially painful when you see one like this absolutely break the heart of someone you love.
The drive was only about 30 minutes, but it was a rough one. The road was in bad shape and in our little minivan, Aleena shook with every bump on the road. When we arrived at the mall Aleena’s pulse ox started to alarm, signaling a dangerous drop in her oxygen level. We pulled over into the closest parking lot we could find, a restricted construction zone, and started to cough her to clear her lungs. The vibrations from drive up had really boosted her saliva production and she aspirated on some of those secretions. We did a short treatment, lasting about 10 minutes, and let her rest before starting the car again. At this point Aleena was exhausted. Her eyes were bloodshot and teary. The neck brace she wears to help her keep her mouth closed was damp with saliva and I could see the corner of her mouth start to quiver just a little bit, a sure sign that she’s emotionally drained. I asked her if she wanted to go home, maybe try this another day, but the look I got could have melted steel. With a strong “uh uh” and a furrow of the brows, I got the message I was asking a very unnecessary question so we started the car, and continued on our way.
We arrived a few minutes later, a little tired but mostly still ready for a fun afternoon. There was a good parking spot by the mall entrance and, being a Tuesday afternoon, there were not a lot of people around. I started to relax as we let the ramp out. I maneuvered Aleena’s chair out of the van while Stephanie loaded up with our usual travel gear: a backup bipap, power cords, travel bag, and ambubag.
A minute later we stood at the entrance of the store. What I saw could have been any night before Christmas, gotta have it, shopping nightmare from every holiday movie you’ve ever seen. Girls and Moms were shoulder to shoulder and the noise was over the top. The aisles of display cases seemed about a person and a half’s width apart, and the number of people jockeying for position in front of the display cases made maneuvering our wheelchair nearly impossible. Stephanie and I looked at each other and we both noticed that Aleena’s heart rate had spiked, letting us know she was getting very stressed. This scene, the crowds, the noise, it’s something we were familiar with and normally we would have turned around and gone home, but this was American Girl and there was no turning back.
Stephanie, taking her life in own hands, blazed a trail for us from the front door to the cafe and gave the stewardess our name. The stewardess, looking frazzled and a little confused, tried to communicate something to Stephanie and, even though I was only about three feet away, I couldn’t hear any of it. We were soon escorted to a table in the back of the restaurant. The seating in the cafe was so close knit there was barely room for an ambulatory child to make it through, much less our outfit. Most people had to stand up and slide their chairs out of the way as we worked our way through the crowd of children and parents. When we made it to our table we quickly realized it was lower than normal. Great for little kids, but Aleena’s chair only drops so low, putting her chair above the height of the table. What that means for us is that she had to turn sideways and sit beside the table instead of rolling under. What that meant for her was that she was unable to see anything on the table including her doll, the food or any of the decorations. From her point of view the restaurant was mostly wall and ceiling. We tried our best to make it fun, bringing the decorations up to her, letting her taste the food, but the crowds, the noise and the inability to really participate in anything that was going on became to much. Aleena just started to go to sleep. We quickly finished our meal and made our way out of the cafe as best we could.
After eating it was obvious Aleena was done with this trip. She was dazed. It’s this wonderful little defense mechanism she has when her stress level goes off the chart. Aleena’s eyes start to gaze out into nowhere and she slowly drifts in and out of this kind of half conscious state, focusing her vision occasionally to see if whatever situation she was stressed about is now gone. It was in this state that we made a difficult and slow lap around the store, trying to avoid people bumping into us and attempting to get into good viewpoints of the display cases where we could; all the while trying to salvage whatever magic might be left of this world of American Girl. We asked Aleena to pick out a new outfit for her doll, at which point she awoke from her dazed state to pick a cute summer dress. It was a brief moment that wouldn’t last, a family of two girls and a mom squeezed past us, bumping me into Aleena’s chair and sending Aleena back to whatever dream land she had momentarily emerged from.
By the time we left the store all three of us were exhausted. I couldn’t even summon the energy to drive home. We headed up to the food court and sat. We did nothing but watch the merry go round for about thirty minutes before preparing for the drive home.
We arrived home about five and placed Aleena in bed. The rest of the evening was TV and books. When it was time for bed I asked Aleena if she wanted to sleep with one of her dolls. She looked up for “yes” and I went through the rotation:
“Samatha?”, “No”
“Felicity?”, “No”
“Madaline?”, “Yes.”
Aleena Van 2.0, Part 2
I took a trip down to Atlanta Custom Coach this morning to check in on the Aleena Van. It’s been 10 weeks since I left it down there in Peachtree City and I was a little nervous about what I would find when I got there. I have to say I was pleasantly surprised. Todd and the guys at ACC are doing a really good job getting everything together. The cough assist cabinet is looking really good, and that’s a big part of this conversion. We spent about an hour going over all the work that’s been done, and what’s left. The AC and the generator are installed, the cabinets are framed and the cough assist cabinet is nearly completed. The inverter and flooring are yet to be completed and most of the car is still on the shop floor. Still, they are telling me we are only a few weeks away from completion. We may get some summer travel in yet.
Here is the control panel for the inverter and generator. I tried to brighten it, my phone does not have a flash.
The cough cabinet is coming along very well.
They even finished the drawer space for suction caths.
The generator mounts under the car and ties into the diesel fuel.
Cabinets in the works
Cabinets still in the building stage.
The AC is looking better than I expected. I'm still a little nervous about not going with the stock AC unit.
It hurts just a little to pay for an interior that's now lying on the shop floor. Just tell me it's worth it.
Sprinter doesn't make a dual seat, so ACC took the three seat bench and sliced one seat off.
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Tagged Generator, Inverter, Lift, Mobility, Sprinter, Technology, Travel, Van
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Brookhaven Wiz Kid
I certainly can’t turn down an opportunity to brag about my own child. Thank you Andrea for the wonderful article about Aleena. People like you and the Brookhaven Patch make Brookhaven a unique and fun neighborhood to live in.
Article: Brookhaven Wiz Kid
It’s All In the Eyes
Imagine communication without many, if not all, of your most basic tools: those mesmerizing hand gestures, the animated facial expressions, emotionally packed intonation, or most important of all your ability to vocalize words. How would you communicate? You might have a great poker face, but other than that you’d be in real trouble. What would you do when someone told you a joke and you couldn’t laugh, or made you angry and you couldn’t shake your fist, even worse what if you were hurt, how would you call for help. Now imagine these problems as a child. You’d like to tell your friends you want to play, or answer questions for your teacher, pick out your favorite clothes, or ask for a great new toy, but you just can’t. Communication has locked you into your body and forced you to take a passive role. This is the very situation many children with muscular disease are in, especially SMA Type 1, especially Aleena.
Aleena possessed the ability to vocalize until about two years old. She was in the learning stages but could get out mom and dad and a few other noises and sounds that we could interpret if we tried hard enough. As she got older and had a few ICU stays Aleena lost this ability, and now only has the strength for a few one or two syllable utterances. Aleena’s communication is wholly dependent on technology, and we are lucky to live in an age where technology seems to expand to meet our needs; there were not only several options in the commercial market place for us, but many experienced people willing to help us decide what we needed and provide demo equipment where necessary. The main challenge we faced in finding a communication device was Aleena’s inability to move. When you can’t move your hand you can’t move a mouse, and when you can’t lift your arm you can’t target a touch screen. If you can’t move your head, movement tracking is out of the question, and when you can’t form a breath “sip/puff switches” don’t work. Aleena’s only strong consistent movement is her left index finger, which is currently fitted with a fiber optic switch, but even with the switch we had a problem. Aleena’s endurance with a switch is limited, as is her ability to time an auto scanned target. For those that have never seen “auto scan” it’s a process by which a computer automatically highlights, one at a time, a sequence of words or pictures. The user “clicks” when the picture they want is selected. To me, it’s a maddening waiting game as each icon you don’t want is highlighted and, even worse, waiting for another round of scanning when you inevitably miss the icon you want.
For years Aleena used a switch based Dynavox with her left finger, but because of endurance and accuracy we were limited to only four or six words per page, leaving Aleena no room for any kind of novel/dynamic speech. We created a yes/no/maybe page she would use when we asked her a question, she used a hello/goodbye page when people came to visit. It was good, but it was not the long term solution to our communication problems, and we decided it was time to move on. Technology had to have something better so we started to demo eye gaze based devices. These devices use the reflection from a persons eye to control mouse movement. It seemed perfect to us. All Aleena had to do was look at the computer screen and, like magic, it was supposed to move the mouse pointer wherever she looked. Unfortunately, the only company that seemed to be able to get this right was Tobii; and at the time their only device was so big and bulky, and expensive, it wasn’t practical. But, lucky for us, that didn’t last long. Tobii teamed up with a great AAC company called Prentke Romich and the combination of Tobii’s newer smaller eye-gaze attachment with an experienced AAC computer company like PRC created what I consider to be a godsend for my daughter.
The Eco2 with EcoPoint has opened a world of doors for Aleena, and unlike many devices we’ve tried this one delivered what it promised. The device is a basic Windows XP tablet computer with two small eye-gaze camera’s mounted underneath in a protective shell. The setup on a day to day basis for us is simple. We mount the device to a stand and put it in front of Aleena about 2 feet away from her face. There is a very large margin of error in positioning the device and the eye-gaze works from several different angles, although we do try to get it in optimal position. It only takes about two minutes to get it right. There is no repeated calibration if we move the device or turn it on and off, in fact we have not calibrated the device in months and it’s still extremely accurate. When you do calibrate it’s simple and fast, taking about thirty seconds as you follow a little ball around the screen. Calibrations also seem to work very well across users, so if I calibrate it, the device will still work accurately if someone else uses it, especially inside PRC’s language software. The Eco Point’s amazing ability to hold a calibration over time when other devices we tried would not, was a real strong feature. My guess is it’s the unique design of using two cameras when other devices use only one, a setup other manufacturers are starting to adapt.
The device boots into PRC’s propriety implementation of Minspeak called Unity. Minspeak is a way of generating dynamic speech from icons instead of words. It sounds cumbersome, but the work flow of the speech program and how icons work together to build sentence structure is really ingenious. For example: a person pointing to herself stands for “I”, combining that with the smiley face creates “I feel”. Combine those with the smiley face again and get “I feel happy”. It reminds me a little of American sign language. For someone who learns the program, and it’s really intuitive, the icons allow a much faster way to communicate than typing with prediction. It’s certainly been advantageous for Aleena, since she is still learning to read and write, the icons are a perfect way for her to learn. She is able to find new words and explore the language by thinking about what the icon pictures mean.
The language software is great, but the real magic is in the effectiveness of the eye-gaze. Where before Aleena could navigate four icons on a page, she now easily navigates 48 icons on a page. Combine that with context switching based on vocabulary, and page navigation, her language possibilities are comparatively limitless. All she does now is look at the icon she wants. The eye-gaze is set to dwell, so after .7 seconds of looking at the desired icon the computer simulates a mouse click and speaks the desired phrase. There is no actual mouse click for her, no physical connection to the computer at all, the computer simply follows her eyes.
The eye-gaze works almost the same in the operating system. Before PRC the idea of working directly in the operating system with off the shelf programs was a pipe dream. Today I no longer spend hours looking for switch adapted software, it’s just not necessary, the mouse simply follows her eyes. Since the targets in the operating system are much smaller by comparison than the language software icons, and some software we use is 800×600 resolution, Aleena’s does not use the dwell function for a mouse click, like she does in the PRC Unity program. That was a downside, but not a big one. In our experience, the dwell mode of the eye-gaze just did not work effectively in the operating system; so we switch adapted a mouse and Aleena uses the fiber optic switch on her left finger to simulate a left click. She is able to single and double click and, miracle of miracles, click and drag. For those wondering why “click and drag” is a miracle, try to click and drag something on your desktop without moving; can’t do it? Aleena can.
Here are some of the programs we’ve been able to use the Eco2 with EcoPoint eye-gaze system with:
- Laureate Learning software packages in direct select mode
- Tux Paint drawing program, not just to stamp pictures, but to actually use the paintbrush and draw.
- Tumble books reading software
- “Off the shelf” Disney games
- Many Flash/Java based online educational and entertainment games.
Lately I’ve noticed a lot of talk about the Apple IPad for AAC. In all deference to Apple, which has made a very cool entertainment device, AAC has to be more than a touch screen, especially for those who can’t move enough muscle to actually touch the screen. Eye gaze, when done well, opens the entire world of computing, without limits, to anyone with the ability to use their eyes. Pair this technology with quality language generating software like PRC’s Unity and the combination is simply amazing. It’s given Aleena a new world, one I take great pleasure in watching her explore.
This is a quick video of Aleena playing a memory match game using the eye-gaze to control the mouse and her left finger to “left click”. The flicker under the screen is only visible through the video. That attachment under the computer is the EcoPoint, and to the eye it’s just black. You can hear Aleena talking to the computer in the background. You know, sometimes you have to let it know who’s boss.
This is a video of Aleena working with PRC’s Unity Language program. By this time she was getting tired of being the guinea pig for my sorry video skills. I think you’ll pick up on that. At the end of the video she pauses the eye-gaze device, which basically turns it off. She is still in the learning stage, but she’ll get it.
Here is Nan and Aleena working on the alphabet. Since the angle of Aleena’s computer makes it difficult for anyone to see the screen but her we clone her desktop to a secondary monitor. It’s helpful for her teachers to see what she’s trying to do. Nan is using it to sing along with the alphabet.
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Tagged AAC, communication, Dynavox, Eco2, EcoPoint, eye-gaze, Technology, Tobii, Unity, voice
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Aleena Van 2.0, Part 1
When Aleena was eighteen months old she outgrew the supine carseat we were using in our Explorer. This is when we began the search for a new way to travel, something that would carry all our equipment and allow us to roll in and out with ease. I had dreams of the day when we could be sitting around the house and decide “Hey lets go to the park” then we would quickly gather up all our belongings and take off in the car for a day at the park. Needless to say, that scenario is still a dream, but during the search for “Aleena Van 1.0″ this was what I thought was attainable. We were in California at the time of this first search and while I don’t remember every place I called for advice on purchasing an accessible van I do remember with great clarity one place in particular.
The company was Nor-Cal Mobility and I remember this conversation because after I described, over the phone, what I needed the salesman told me I’d never be happy with a converted minivan, I needed a full size van. I was furious. To think that someone would take advantage of a handicap child by trying to up-sell me into a more expensive car was more that I could take. I regret not taking that mans advice with every trip in our converted minivan. Every time I have to stand outside the van to cough my daughter, every time my wife hurts her back hunching over to administer emergency care, and every time something rolls across the floor in between her chair and the sliding door, well out of our reach, my ability to listen to people more experienced than I improves dramatically.
I’m sure a minivan works well for a lot of people, but for us it’s nearly intolerable. At first, when Aleena was young and in a Tiger 2000 stroller it was ok, but children grow. Since purchasing a full size power chair, we’ve had to remove front passenger seat just to get enough room to manuver Aleena’s wheelchair in place. I sit in the front while my wife sits cramped in the back, next to the cough assist machine and suction. All our bags and backup devices go in the floorboard where the passenger seat used to be, and Aleena’s head can’t be more than eight inches from the ceiling of the van. The ride of the minivan is horrible for an SMA child. Most people don’t notice it, but when you don’t have muscle strength in your neck and back, every bump causes your head to jump from side to side.
Since that purchase we have been looking forward to the day we could transistion into “Aleena Van 2.0″. After an extraordinarly horrible trip to Chattanooga, TN to take part in my brother-in-laws wedding we decided we could not wait any longer. Any money we had not saved we would borrow from family and banks, putting us in debt for the first time since we were married, well, house excluded. We already knew what we were going for this time and with past experience guiding us we purchased a Mercedes Sprinter. A monster of a van, maybe overcompensating just a little for past failures in our car buying choices. Stephanie and I spent a few weeks with Google Sketch up designing our dream interior with places for each of our medical devices and plenty of room to maneuver. I actually asked for and listened to the advice I was given and just last week finalized a plan with Atlanta Custom Coach to upfit the van to Aleena’s specifications.
If all goes well we’ll be on the road with something new next month. I know there will still be problems, I’m not so vain to believe we now have the perfect solution, but I think this time we’ve made better use of the advice around us. A little experience has given us the perspective to know what we need and the patience to work to get it. Who knows, maybe my dream of the park is actually within reach.
Posted in All Posts, Mobility, Technology and Toys
Tagged Conversion, Lift, Mobility, Sprinter, Technology, Travel, Van
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Painting Party
Birthday parties are a lot of fun, but sometimes not easy events to attend. We have wonderful neighbors and Aleena’s been invited to a few neighborhood parties, which is great, but most of the time something happens and we can’t attend, or when we are able to attend she can’t participate with the other girls. We spend most of the time as outsiders, watching the other party goers flash down a water slide or run around and play outside. Today was something entirely different and it felt like, for the first time, Aleena really took part in her first birthday party.
Girl scouts has brought Aleena a lot of opportunity to be with other girls her own age, and when she received her invitation from one of the girls in her troop, she was ecstatic. It was a painting party at a new shopping complex down the street, so it was a perfect opportunity for us to get out of the house. The party started at 4:00 and we started packing at 3:00. Usually before we travel anywhere new we run a quick scouting mission, looking for parking, identifying ramps and the best ways in and out. We had a busy week so neither my wife nor I had a chance to do more than drive by, but, to my great relief, the entire complex was very handicap friendly: wide side walks, huge parking spaces and ramps up to every door, a rare occurrence for Atlanta.
As usual when we rolled in all eyes were on us. After the initial shock of seeing a little 45lb girl in a 350lb wheel chair, life support in tow, all the little kids in Aleena’s troop started waving and shouting hello. I lifted Aleena’s arm, to give her enough leverage to wave, and she waved hello back to everyone she knew. We took a seat, well actually half a table, a paintbrush, and a coloring page with the outline of a flower and started to work.
As we worked we soon gained the company of another little girl who sat down at the table with us and asked why I was taping a paint brush to Aleena’s fingers. “Because she is not strong enough to hold it herself” I told her. Perfectly satisfied with this answer the little girl proceeded to explain to me the colors she chose for her drawing and to ask me what Aleena’s favorite colors were. I picked up the tray of paint colors and pointed one by one to each color as Aleena signaled a yes or a no with a quick movement of her eyes, up for yes, down for no. Three colors into the scan she chose a sparkly pink to start her flower with and the little girl sitting next to us affirmed the choice with an approving, “Pink is a good color, I have pink in my room.” After a quick reminder from our new friend that we could choose a different color for each petal on the flower, she got back to her own work.
Aleena paints by moving the brush up and down in one line on the paper. When she’s finished with that line she holds the brush up and I move the paper to a different spot. She holds her brush up in the air until I have the paper in exactly the place she wants it then she comes down fast and hard to mark her spot. When she holds her brush up, it’s time to move the paper again. If I cover every area on the paper and she’s still holding up the brush, then it’s time for another color. We scan the paint tray, one by one; no, no, no, no, yes, and we soon have another color. It’s a long process, but she loves to paint and I love to see her do it.
After painting we made our way over to another area of the room where all the girls were getting their nails painted. One by one we held up the nail polish bottles: no, no, no, yes; and what color did we pick this time? Pink, but of course we had to mix it up a little bit and add the silver sparkles, you know we don’t want to get boring.
After painting and nails an hour had passed and it was getting a little late for us. We stayed to sing happy birthday, then had to say our goodbyes. It was a great trip, but with us no trip is complete without a little bit of drama. As we said our goodbyes the sky started to get dark and the thunder quickly made its way over to us. We finally got packed up, out the door and about thirty feet away from the paint shop when Aleena’s wheelchair stopped. The attendant controls stopped, the drive controls stopped and no amount of rebooting the chair will bring them back. We still had a good fifty or sixty yards to go before reaching our car, a short distance that was now starting to look like miles, especially with the prospect of pushing Aleena’s big power chair becoming our only option. It’s not so much that Aleena minds getting wet, but I have yet to find a waterproof BiPap machine. The wind really started to pickup and the thunder was sounding more and more menacing, now that we were stuck outside with no way to move the chair. Stephanie, thinking quick, handed me the keys to the minivan and I left the two of them behind to run to our parking spot. When I finally got the van down the road to where they were stuck, a parking spot opened up on the sidewalk next to them. I parked, let out the ramp, then ran over to push Aleena the short distance to the car. No kidding, as soon as that van door closed, with Aleena inside, the raindrops started tapping on the windshield, a few minutes later the sky opened up and everything around us was drenched.
What a trip. Very fun.
Posted in All Posts, Special Outings
Tagged Birthday, Event, Girl Scouts, Outing, Painting, Party
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