A trip to The Magic Kingdom

We took the boys to Disneyland to celebrate Connor's 4th birthday. It was their first time. We made it a 2 day venture with a night's stay at the Disneyland Hotel, so that we would get a chance to see the night time activities too, and possibly visit California Adventure the next day. I don't even remember the last time I was there! I forgot what a huge fortune it was to go there! Can you believe that for a family of 4, 2-day park hopper tickets costs nearly $600....just for admission! And...most of that time you spend standing in line and spending money on subpar park food! But...we do it all for the kids, right? Connor was beside himself with excitement.

When I had the boys pose by this Mickey statue for a photo, two other girls were waiting along side for the next photo opp. I told Connor to say, "Hi" to the girls and he introduced himself; "Hi, My name is Connor, This is my best friend Aidan." Inside, I thought to myself...Aawwww, that is so sweet! As much as Connor so often infuriates me with his strong-willed, rambunctious, defiant toddler behavior, I can easily forget those misbehaviors when he has moments like that. All things considered, Connor is actually very sweet and considerate of Aidan. Whenever we walk around anywhere, Connor insists on holding Aidan's hand, thus we have to push the stroller and wheelchair side-by-side so he can hold Aidan's hand, which sometimes makes it difficult to get through a crowd of people. But...we don't want to discourage Connor's affection for his brother. I am often amazed at Connor's constant consideration and genuine affection for his older disabled brother. It may have started with our parenting at home. When Connor is excited about something and shows me something, I tell him to show Aidan too. When Aidan lets his head fall forward and he needs help putting it back, I tell Connor to help Aidan put his head back. When Aidan is coughing and gags and looks like he might throw up, I tell Connor to help and grab the red throw-up bowl. Connor willingly and happily helps. He has even started to whisper secrets into Aidan's ear and even used Aidan to support his arguments with me! Connor will say, "But, Aidan wants to watch Thomas!" when in fact, Aidan hates Thomas. Like most parents, I constantly struggle to raise my children to be well-behaved and considerate of others, and its those special moments when he displays that kind of thoughtfulness, that I feel just a little bit of assurance that maybe I am doing something right...

I often ponder at what point Connor will become conscious that his brother is different. Right now at home, I don't believe that he is truly conscious of it yet. Since he has always known Aidan to be the way he is, it's nothing out of the ordinary to him. Though I am sure that when Aidan and Connor attend the same school and Connor's friends meet Aidan, they will probably start to ask him, "Why doesn't your brother walk or talk?" I'm not sure how Connor will react but, knowing Connor, I think he will just shrug it off and say, "I don't know, but he's my brother, that's the way he is," and he'll just go on with his day.

Here's Aidan in his mouse ears hat, displaying his recently mature smile with one less top front tooth...this is the first tooth to come out with maturity. Somehow with less teeth...I think he looks a little more mature...funny, huh?

Here's Aidan getting on the special handicap accessible boat on the It's A Small World ride. It was one of just a handful of attractions that he was able to enjoy. The other attraction he was able to ride was Jungle Safari. These two attractions had special handicap accessible boats that the wheelchairs can be pushed on to. We first tried to ride on some ride at Toontown and got turned away right at the loading point. I had even offered to pull off the special seater and strap it in the ride, but they turned us away saying it would be unsafe. At first I was annoyed and felt discriminated against. But...when Kevin and Connor came out of the ride and said that the ride was scary and a little jerky...it was probably wiser that we did not ride it. It surely would have freaked out Aidan. He's not too crazy about the larger than life characters too, e.g., Mickey and Minnie. He'll completely tense up and start tremoring when he sees the characters come his way. I basically have to shoo the characters away from Aidan.

I had emailed Aidan's teachers and therapists that he was going to be absent the 2 days for a trip to Disneyland. So they all knew about his trip, and in case the kids were going to ask where he was for the 2 days, I wanted to give Aidan something to share with the kids when he returned to class. So when we got back, I printed out a few photos for Aidan to take to school and told Ms. T about them so that she could share with the kids if they asked. I also recorded a brief message on his voice output device spoken in first person as if Aidan were saying it, saying that he went to Disneyland for the first time to celebrate his brother's birthday and that he had a great time. Ms. T and Aidan got back from school that day and she said the kids loved the pictures and the message. She said the teacher, Mrs. B, gave them the opportunity to share the pictures and the voice message to the entire class. I thought that was very cool of the teacher. In the back of my mind, I always empathize for Aidan because he cannot speak for himself, thus I try to fill-in-the-blanks for him whenever I can. Especially, in this case with the other children in his class, I want them to accept him and see that he is a cool kid and does cool things. I have high hopes that one day...when his communication is figured out...I am sure he will have lots and lots of things to express.

Hooray!

Things at the school have been going well....so well that I sometimes am in disbelief. Could I be dreaming or hallucinating? The teachers have been great. The kids have been really great. The inclusion facilitator is amazing! And the therapists have been great! Is it too good to be true? Am I gonna wake up one day and find out it was all just a dream?

First, let me start with the teachers. The teachers have really come along with figuring out how to include Aidan in the classroom. They even figured out a way to specially include him in their recent Thanksgiving Play! With the help of Miss L, the Inclusion Facilitator, they gave Aidan the job of introducing the class to kick-off the play. Miss L programmed Aidan's communication device with the one line for Aidan, "Room 1 would like to introduce our class play, The First Thanksgiving". With Ms. T's help, he triggered the device to speak out the introduction from the device. I rushed over from Connor's preschool to catch the play. Many curious and proud parents were standing ready with their camcorders and cameras to document their kids' debut performance. To my surprise, they had Aidan situated front and center, in front of the class, dressed in his self-made Indian outfit. The other "Indian" children to his right and the "Pilgrim" children were to his left. He had a huge smile on his face! On cue he triggered the device and made his introduction. The play was very cute; even with a song. I couldn't tell you what the story was about because I was focused on watching Aidan's reactions and still reveling in the fact that they not only crafted a specific role for him, but it also featured him prominently, front and center! That was so cool! Full-inclusion at its best.

The kids have been so warm and friendly. After their initial questions and curiousity, they have just come to accept Aidan and have truly befriended him. The kids now speak up for Aidan. When the teachers are passing out stickers to those that are sitting quietly, the kids speak up, "What about Aidan, where's Aidan's sticker?" There was one particular day that I subbed in for Ms. T and accompanied Aidan to school. One little girl from another kindergarten class came by and asked me about Aidan; I didn't even have to say anything because one of Aidan's classmates explained and answered her questions. Aidan's friend even pointed out his intrathecal baclofen pump (Aidan's surgically implanted drug infusion pump) and said it was for his muscles (to relax the muscles). And also pointed out his g-tube and explained it was for him to eat. Wow! I was impressed that she knew so much about Aidan! And she just explained it matter-of-factly and very simply in a way that the other 5 year old could understand and accept.

And just like one would expect in any school setting; there are social cliques. Aidan's clique is about 4-6 kids that seem to gravitate to him. I spent a little time with one little girl in his class who is supposedly Aidan's best buddy. She is so sweet and warm and friendly with Aidan. She taught me some things that I didn't know about Aidan...that he has 4 favorite things in school. She informed me that his favorite things were: 1) the kitchen outside; 2) the kitchen inside; 3) watching her hula hoop; and 4) the house. The little girl's friendship with Aidan seems truly genuine. She holds his hand, whispers in his ear, and talks to him like the normal comprehending kid that he is. On a recent field trip the little girl's mother had told me that her daughter had woken one morning and told her that she had a dream that she married Aidan. Is that just too cute?! The mom also told me that her daughter shares stories to her about Aidan everyday. I really hope their friendship will carry on beyond kindergarten. It would be great if these friendships he develops now will carry on throughout his elementary school years. That would be really wonderful.

Miss L, the inclusion facilitator, is remarkable! She shows up everyday in the classroom, observing, advising, guiding, facilitating! She coordinates and leads monthly Inclusion Team meetings where she, and I, and Aidan's teachers and therapists all discuss ideas, issues and Aidan's progress. Every week she programs his Dynavox to include the class's "story of the week". Miss L even observes the kids and helps guide their behavior towards Aidan. She advises them not to "mascot" him...not treat him like a pet and to talk to him like a person. Hooray for Miss L! She has even looped Aidan in with the Adapted P.E. teacher, who sounds like another great teacher. The A.P.E. teacher sent me an email about ideas she had for Aidan for P.E. She plans to build special equipment for him like a "bowling ramp" so that he could bowl or kick a ball in for soccer or basketball or pass the ball to a friend. Great thinking outside the box! Hooray for the A.P.E. teacher! I am so floored that she cared enough to come up with an idea that actually creates more work for her and she even wants to include it as a goal on his IEP (individualized education program).

The therapists at this school have also been very impressive. I find the therapists at this school are much better than the ones at Aidan's former special ed school. This is contrary to what I would have thought. You'd think that the therapists at a special ed school would have the most experience and know how to work with disabled kids. But, the occupational therapist at Aidan's old school just did not know how to work with him. She limited his therapy time to 1 hour per month, breaking down to 15 minutes per week -- what can you get done in 15 minutes?! I met Aidan's new school's occupational therapist and at our first meeting she recommended to me that she wanted to increase his OT services to 1 hour per week....asking me if I was ok with that. Are you kidding me? YES!! Finally, someone that knows what to do and how to work with him! It's been my experience with government-funded therapies is that when they see little to no progress, they are quick to cut services. To my pleasant surprise, this OT wanted more time with him and knew how to craft a reasonable, achievable goal. Hooray!

If I am dreaming, don't let me wake up!

Just one of the kids...

Aidan is sitting in his new classroom chair. It's the third one the school district has purchased for him. The two chairs previously purchased for him at his old school were very expensive, hugely bulky, impractical and uncomfortable for him. This mobile floor sitter was purchased for use at this new school. This chair has worked out wonderfully. It has adjustable tilt, has wheels and brakes, wipes clean, and is low to the ground, great for kindergarten classroom rug time; and best of all - was only a fraction of the cost of his two previous chairs!
Aidan gets put in his adapted bike by his physical therapist. The kids in his class love his bike and always ooh and aah when he's in it. Aidan and his bike usually draws a crowd of kids around, so much that he usually can't get pushed very far because of the traffic created by the kids around him. Aidan loves it.
The adapted bike was purchased by the school district for Aidan's use. On the urging of Aidan's old preschool teacher, this adapted bike was surprisingly approved for purchase by his new school's physical therapist so that Aidan would be able to socialize and be included in recess activities with the other children.
Aidan in his gait trainer. This piece of equipment helps him with weight-bearing and supports him in initiating steps. The kids seem to love and marvel when he is out of his wheelchair.

Partners

A good partner makes all the difference. Ms. T has so far, proven to me, to be a wonderful partner for Aidan. She is really the biggest key to making this full-inclusion experience work. She has been with the district for 15 years as a health care assistant. And for most of those years she has been working with special needs children in full-inclusion. When I first thought of having Aidan fully-included in a regular school, I strongly considered hiring my own private assistant for Aidan. My thought was that I could have complete control and monitoring of my own hired aide, and that person would have complete accountability to me. But for various reasons, I decided to go with the district provided assistant. Though, Ms. T wasn't just assigned to Aidan, I specifically requested her. I became familiar with her from her summer working at Aidan's special ed preschool in his classroom. Aidan's preschool teacher thought very highly of Ms. T and she recommended Ms. T to me to consider to be Aidan's future aide. Before Aidan's school year at his special ed shool ended, Ms. T and I connected and we were both enthusiastic and excited about working together.

Now that school and their partnership have been in full-swing, I think getting Ms. T was the best thing that could have happened! She is enthusiastic, diligent and caring. She accepts suggestions and directions well. And she even doesn't mind when I ask for the details of the school day....though, she is often more detailed and long-winded then I need. When she reports back to me how things went at school, I am often surprised at the things she does with Aidan. she has proven to not be intimidated or put off by Aidan's idiosyncracies. She has gotten good at reading Aidan's body language and knowing when he would be feeling uncomfortable. She has proactively gotten him up and out of his chair and sat him on her lap for classroom rug time. I've often seen other adults who don't know how to react or don't know what to do when Aidan gets into his hyperextension, stiff posturing. Without my telling, Ms. T knew exactly how to handle him and help him relax. She has been good about getting Aidan into his special equipment. She has even been mindful about maintaining Aidan's integrity. One kid had asked, "Is he wearing a diaper?" And Ms. T responded, "No, it's a pull-up," making it sound a little less babyish. Since Aidan has been vocalizing more, she's really encouraged the children to continue to talk to Aidan and embrace him to get more out of him. She really gets him in the mix and mixes it up with the other children. I learned from her that Aidan likes to play in the play kitchen with the other kids in his class. Who knew? Apparently, younger brother Connor likes to play in the kitchen at school too...little known facts that Dad is not too pleased about or willing to brag about his boys!?

I hope Ms. T is willing to stay with Aidan for a long time. She's told me that she has been with her past kids for several years and usually until the kids change schools for one reason or another. But, I always secretly worry about the future though....what happens when Aidan gets too big and heavy for her to continue to lift for diaper changes, and getting him in and out of equipment? Will they try to assign a male assistant for Aidan? Aidan is probably different from the other kids she's had since he requires maximum assistance, complete lifting for all transfers and positioning. Regardless of what the future holds, at least Ms. T has helped us get off to a great start.

The Talking Computer

We saw Ms. C, Aidan’s Augmentative Communication Specialist, and we tried the new Impulse Switch. This switch is a brand new, cutting edge device that uses wireless Bluetooth technology similar in function and size to a Bluetooth for your mobile phone. It has sensor pads on the underside which can be affixed to a specific muscle and sense its movement. For Aidan, since his smile is his best, most reliable form of communication, we were trying the Impulse Switch on his cheek muscle. It’s supposed to work with the Dynavox, a dynamic communication system with visual and auditory outputs. When the device visually and auditorily scans through his choices, Aidan would make a selection by smiling, and thus the Impulse Switch would trigger the device and make the selection for him. That’s the idea any way…But, Aidan was having a particularly bad day with his body, posturing a lot and grimacing and orally groping. So the switch was not going to be that helpful. Morever, Ms. C tried exhaustively to get the Impulse Switch to work with the Dynavox and it just would not. Definitely not a plug-n-play device. Apparently, the Impulse Switch works well with a laptop and appropriate software. But, that would have to be something that I would have to purchase. But, given Aidan’s difficulties with his body, we decided at this point in time to abandon the idea of the Impulse Switch. Because the switch costs nearly $2000, Ms. C convinced the company to loan it to her for a 2 week trial period for Aidan. The point of access to communication has always been the biggest challenge with Aidan. We’ve tried for him using his right foot to kick a string switch, but that movement ends up being a little taxing for his body some times. He might get excited and kick to make his selection but then he can’t relax his body enough to release the kick appropriately. So, with all these unresolved issues, we decided to simplify the use of the Dynavox and just make it very basic where Ms. T would read out his choices on the screen and based on Aidan's smile make the selection for him. Our priority was to just get the Dynavox into the classroom with Aidan so that he could get used to using it and get the kids and teachers more comfortable seeing him with it.

And...apparently the Dynavox (the kids call it, Aidan's Talking Computer) has been a big hit in the classroom! The kids love it! And everyone seems to gather around him whenever he has it. Ms. T is getting comfortable with it and Miss L, the Inclusion Facilitator, is starting to work with it and adapt class lessons and input programs into it. It'll be a learning process as to how to incorporate it as his communication device as an included member of the class.

Finally…We have bus!!

After about 4 weeks of calling, hounding, fist-slamming,…talking to 8 different people in 4 different departments...we have bus! Seriously, I have not experienced a more disjointed and inefficient process than in dealing with the school district’s Transportation Department. Getting them to resolve the bus issue for Aidan was like pushing an elephant thru a key hole!!? It was hurdle after hurdle after hurdle. First, someone didn’t put him in the system for bussing. Then, they got him in but it was incorrect. Then, they put him on a ridiculous 2 ½ hour route to get to a school which is just 10 minutes away. Because of that, I felt compelled to hit them with a doctor’s note limiting his ride time to no more than 45 minutes. At which time, they then seemed to have invented to a new rule where the school district’s doctor had to examine him and approve the bus ride limitation. When I mentioned this rule to other transportation district personnel, they had never heard of it. And…when we showed up to see the district doctor, he did not even lay a finger on Aidan! Even the doctor said it was a formality and as long as we had our own doctor’s note he would approve it. What a waste of time and energy! Then they said because we live in a gated community, we had to have a Private Property permit. What?? When Aidan had bus transportation before, that was never required. It’s as if they have to give you road block after road block before they will let you coast! After I gave the Transportation Manager an earful for his department dragging their feet and not doing their job right, we finally, finally, got the bus!
What happens to those kids with moms that have to work, and don’t speak English and don’t complain? It appears to me that they try to make it hard for the parent, and make parents jump through hoops to get what they want. And if the parents are dedicated enough and squawk loud enough, then they might get what they want….but surely, the district is not going to make it easy for them! What about the families with both parents working that have to rely on the bus to transport their child to school…do they just not go to school?? Something is very wrong about that…

Week of September 14, 2009

I stayed up last night to make an About Me picture booklet for Aidan. Since Aidan can’t speak for himself, I made the booklet for him, so that Ms. T could share it with the kids, if the occasion came up. I noticed the kids seem to ask each other if they had siblings or when was their birthday, what cartoons they watch, etc. I wanted the kids to understand that even though, Aidan looked different from them, he still likes and does a lot of things they like doing. So the booklet has pictures of our family (showing brother Connor) and it has pictures of Aidan’s favorite TV shows, what he does for fun (swimming, horseback riding, snow sledding), where he’s been for vacation, (skiing in Big Bear, surfing in Hawaii, zip lining in Costa Rica) and pictures of Aidan’s friends (typical friends and special friends). I made a point to include things that the kids could relate to by showing pictures of him doing things that they also like doing. I also included pictures of Aidan in his special equipment (the stander, the gain trainer), so that the kids will be a little familiar with it when they see him using the equipment.

Apparently, the About Me booklet went over really well. Ms. T said she ended up showing both classes the booklet. There is another Kindergarten class next door that shares the same playground and recess/snack time. Aidan’s class was just getting used to having him in the class and knew a little about him already, but the Room 2 kids were all very curious. Ms. T said nearly all 40 kids (both classes) had gathered around her and Aidan during recess as she took them through Aidan’s About Me booklet. Kids in Room 2 asked, “Why is he like that?” “What happened to him”? And now since Aidan’s classmates already knew, they were answering the questions for Aidan and Ms. T. Well done class… helping out your new classmate! As they went through the booklet, the girls were shouting out, “I like Dora too!” And others were saying, “I’ve been horseback riding,” “Wow! I wanna do the zip line!” The booklet did exactly what I wanted it to do...give the kids something to relate to with Aidan. Maybe they could think, “Hey, He’s different, but we like the same things” or maybe they’ll think, “Wow! He can do a lot of cool things!”

The bus transportation was still not resolved yet. Someone setup some ridiculous pick-up and drop-off time for him that made him be on the bus for about 2 ½ hours each way! What!! How could that be? The school is only 10 minutes from my house?! Were they driving him to Santa Barbara before they drop him off at school??!! That’s when I decided that I was gonna need a doctor’s note to justify limiting his bus ride to no more than 45 minutes each way. In my mind, that was within reason if you had to pickup a couple of kids on the route. They were gonna have to make sure the bus had a lift too. I had to talk to about 5 different people in Transportation and Special Ed Unit to get them to start the process of correcting the issue. Oh so they corrected the schedule in the system but it takes about 3-5 business days before it gets officially really in the system. What! Is this just typical of government agencies…INEFFICIENT and SLOW?! One person only does one specific thing and that person can't work outside her little box and talk to the other people in the chain to help you. Sometimes I think these budget cuts could be a good thing...at least in terms of administrative staff and inefficient, unproductive workers. But, I would never support budget cuts in the classroom. Fortunately, Aidan's class size has remained at 20 kids; unlike many other schools in the district that have had to increase to over 25 kids. But in general, I think the Palisades area schools have very active parent committees that do a lot of fundraising and donation drives which help support keeping class size down and hiring more teachers. Well, my plan was to call Transportation everyday and hound them until they could figure it out.

Since I’ve had to drop-off and pick-up Aidan and Ms. T, I see the kids all get ready for dismissal. I walked in one time and saw Aidan and Ms. T in the “kitchen” and several kids were surrounding them and they were playing. It was really great to see. The kids were putting the shopping basket on Aidan’s lap and putting play food in there for him. One kid put a banana in Aidan’s hand for him to “buy”. It was so cute! I was so happy to see that they were beginning to warm up to him. And it was only about the 5th day of school?!

Because I had blown a tire right outside the school, I had to wait for AAA. So I was waiting with Aidan and Ms. T in the play yard. Class just got dismissed and there was a parent volunteer meeting outside Room 2. As we were sitting around, this one boy comes over and says “Hi, Aidan” and proceeded to give him a big hug and caressed him dearly. Since I didn’t recognize the boy from Aidan’s class, I thought to myself, “Who are you?” Ms. T said that it was *Nathan from Room 2, they had met earlier. Wow, really? And he’s already hugging Aidan?? Cool! It was truly such a sweet, genuine, unconditional show of affection; it really touched me.

So I am really beginning to realize that it will be the children that are going to be the easy ones to win over. The kids are gonna be the ones to break down the barriers for their parents. Many parents that I’ve seen around seem to be afraid to come up to us and say anything, while their children have been the ones to come over and say Hi or Goodbye. This one girl from Room 2 saw us loading into the minivan and she and her friend popped their heads in to say, “Bye, Aidan!” Again, she wasn’t familiar to me so I was like “Who are you?” I asked her her name and she said she knew Aidan. And I could see her mom very cautiously standing back and wondering who that child in the wheelchair she was talking to was. And she didn’t even come over to introduce herself or meet us. I guess she was only going to talk to us if she really had to. Aidan and I have encountered her type many times.

It’s an interesting dynamic with having 2 teachers teach the same class. Each teacher has their own style and personality. I’ve gotten the download from Ms. T that, Mrs. B is the more warm and fuzzy one and Mrs. S is a little more straight and more of a disciplinarian. Ms. T had told me about a time one Aidan was put in his stander by the PT and several of the kids were really intrigued and interested and were marveling at the fact that he was standing. And rather than just making a quick acknowledgment about it Mrs. S quickly changed the subject and ordered the kids to stay focused and stay in their seats. Sometimes the kids would gather around Aidan and play with him and hold his hand or dance around him or something and she would discourage the kids, cautioning the kids to not hurt him. What?! Ms. T was rather annoyed with that and she wants Mrs. S to not discourage the kids to interact with Aidan. Aidan is not fragile. If he is to be fully-included in her class, she has got to let them play together with him. She should be more encouraging rather than discouraging. I advised Ms. T to tell these types of things to Miss L, the Inclusion Facilitator, so that she could appropriately advise the teachers how to better include Aidan in their class. It’s definitely going to be a learning process for these teachers. Because I am quite sure at this point, though they are thankful that Ms. T is there for Aidan to handle him, the teachers are not really giving Aidan any second thought.

Some interesting kid sound bites:

“Is he hurting” – asking if Aidan was in pain because he’s in a wheelchair

“Is he contagious” – What?! What kind of stuff do your parents teach you?

Kinder – Day 3

Friday. It’s the last day of the first week of school. When Ms. T got to the house I had to tell her that I was very close to keeping Aidan home sick. But, after a good night’s sleep, Aidan did appear much better this morning. As well, I had asked him if he wanted to go to school or stay home and he smiled for going to school. His smile is his primary method of communication. When given choices, he will smile for the thing he wants; and not smile for the thing he doesn’t want. I usually ask more than once and different ways so that I am sure of his choice.

We got to the school and again had a problem with finding an accessible way in. We were able to sneak in thru one of the front gates that is usually locked, but was luckily not closed all the way. Gotta talk to The Principal about this…he’s got to have a solution for us to easily get in to the school.

As we file in to the classroom, one dad introduced himself. “Hi, I’m Robby*”. “I’m Aidan’s mom, Nancy.” “Oh…you’re Aidan’s mom? Michael* talks about Aidan. He loves Aidan”. I was taken aback! Really? It’s only the 3rd day of school? But, that really warmed my heart to hear that another child spoke so warmly to his parents about Aidan.

They settled in. Teacher greeting. Roll call. Tooty Tot song. Funny, because I just stayed at the back of the class observing and Ms. T would periodically look back assuring me that Aidan was included and listening and enjoying. I like how she is really trying to please me and reassure me that he’s gonna be alright.

Things seemed to be progressing along fine. So I thought it’d be a good time for me to get away for a bit and run an errand. I’d be back to pick them up when they got out at 11:30am.

Got home and no news about the bus yet…so I told Ms. T that I’d still take them to school. Next Monday will be the first regular long schedule for the Kindergarteners (8:30 – 1:30). I’m hoping it goes well…And I hope I hear from the bus people! Connor starts school next week with the same 8:30 start time so I won’t be able to be in 2 places at the same time.

Kinder – Day 2

September 10, 2009

Ms. T arrived at the house promptly at 8:00am. The district transportation people were still working on getting Aidan through the system and routed for the bus, so for at least this week, I was going to have to take Aidan and Ms. T to school. It works out for me that Connor’s Preschool start got delayed to next week. I really wanted to accompany Aidan this first week of school.

We arrived at the school and parked by the lower yard. The Principal said the lower yard gate would be unlocked and we could go up the ramp from there. All the arriving parents were saying their goodbyes to their kids as they settled into their classroom. Since Aidan was still getting his tube-feeding, rather than transfer him to the floor sitter, I thought it would be best to just leave him in his wheelchair until the feeding was done. I told Ms. T to go ahead and check in with the school office and do whatever she needed to do with them. I would stay with Aidan. We joined the kids at the back of the rug for the morning greeting. Mrs. S greeted the class, did the calendar (“Today is Tuesday…”) and sang the “Days of the Week” song. Aidan loves that song and knows it well from Teacher K’s class. He was smiling. She started the kids off with a song to get them comfortable. It was the Tooty Tot song. I hadn’t heard of it, but it was a cute one. She had the kids stand up and do all the gestures and movements together. A tooty tot a tooty tot a tooty too too…thumbs up… The kids were following along well. Aidan was enjoying the interactiveness. Mrs. S then proceeded to take attendance and got clear on last name pronunciations. “Aidan, is it Lu-weng?” I corrected her, “Le-Ung”.

She told everyone to sit in a big circle on the rug. Ms. T tried to direct one kid that she could sit next to Aidan and the girl did not want to. Then Ms. T said she could sit next to her and she did not want to, so the girl went to sit next to another girl. In an effort to get everyone to remember each other’s names, they passed around a turtle toy and when each person got the turtle they had to try to name everyone in the circle. Not all the kids knew each other’s names yet…but…it appeared that all the kids knew Aidan’s name!

They read a story then broke early for snack and recess. We found that to be a good time to take Aidan for a changing. We walked across the way to Aidan’s designated restroom/changing area. There was a nice big padded changing table there to take care of his diaper changes. He had already soaked through to his clothes and even through the chair pad! Luckily, I always supply his wheelchair bag with an extra set of clothes (for diaper leaks and throw-ups). We got him changed up and went back to the play yard. I advised Ms. T that the kids snack/recess time would be a good time for her to give Aidan some juice via g-tube. While we were doing this, the same girl, Brittany*, that asked me about Aidan and why God made him that way asked me again. Even though I’m God-ambivalent, I told her that God made everyone different, and that nobody was the same. I (an Asian) looked different from her (a Caucasian). And Ms. T (a Black woman) looked different from me. She accepted the response then, changed the subject…”wanna see me hoola hoop?” Ah…a 5 yr old’s attention span…gotta keep up!
We watched her and some other girls hoola hoop…Aidan was entertained.

Ms. T was trying to recall some of the kids names. She pointed out one girl to me that in the circle on the rug, gave her the cold shoulder, don’t touch me look. And Ms. T said, “she’s got one of those parents”. She told me she’s encountered that before at other schools she’s worked at. Yup…in the Palisades, that’s how it is. Aidan is probably just one of a handful of minority kids in the entire school. In fact, he is a double minority – Asian and disabled. The entire school will know him!

After recess they settled back in and got dispersed into their centers. Ms. T did the book activity, hand-over-hand with Aidan. She got right into it and worked with him along side the other kids. I sat out of the way just observing. She did great, constantly talking him through the activity and guiding his hand to hold the crayons.

Afterwards all the kids got back on the rug for closing, rug assignments and a final story. It appeared to me that she assigned the potential trouble-making, rowdy kids to sit in the front row, right next to the teacher. The final story was Chicka Chicka Boom Boom. Aidan likes that story. But..the teacher didn’t read it, instead the song played on the CD while she turned the pages in the book.

The Principal and AP came and checked in on us again. I am so impressed! They’ve been very attentive and accommodating! Part of me wonders whether they are really trying to make this inclusion thing work because they want it to or if it’s because they don’t want to get in trouble for not doing what they are supposed to be doing?

Later, the nurse supervisor came in to check on us. He wanted to also check out the suction machine and make sure she knew how to work it if Aidan ever needed it. I told Ms. T I never use it at home on Aidan, but got the protocol in place more so that I could ensure that a health care person would be assigned to him at all times. Apparently, if he only had the g-tube feeding protocol, then the district just might send a floater person to pop in for feeding time and then leave. This was not acceptable to me. It was a mandatory for me to have someone with Aidan 1:1 at all times.

Got through Day 2. So far everyone is still warming up to each other. The teachers still seem a little unsure of how to include Aidan. Mrs. S has come over to greet and speak to Aidan…but, it doesn’t appear to me that she’s really speaking to him with sincere interest. That could just be her style….she may be like that with all the kids. I’m wondering if Mrs. B will be better? She will be here Monday, Tuesday next week.

We got home and Aidan threw up. Ugh! At least it wasn’t at school. I’m trying to educate Ms. T about all of Aidan’s little idiosyncracies – what to deal with: the noisy breathing and wheezing – how to reduce it by adjusting his positioning; the hyper extension of the body – how to break it up and get him to relax; understanding his need-to-vomit body language cues. He’s got a lot of little idiosyncracies for her to get to know and understand. She seems to be taking it all in stride and conscientiously making mental notes. I really like her and think she’ll be a great partner for Aidan.

I took Aidan to his chiropractor appointment. Dr. C seems pretty good. He maneuvers his body, unwinds it, presses on it…C1, C2…Aidan laughs when he calls out those neck bones. I believe Dr. C may have been the one that loosened up Aidan’s left deltoid – it was rotating back really tightly. And after Dr. C worked on him last week, it seems much better! Sometimes his arms get so stiff and twisted, I think that it has got to be hurting him! Imagine a huge, prolonged muscle cramp that won’t go away! Ouch!!

But…got home from the chiro and Aidan and started a feeding and he was throwing it up again. I told Becky, our nanny, to resume giving him the Pepcid and also give him some Motrin tonight. I had to slow the milk feed way down. After he was given the medications, he seemed much better. Ugh! I feel so miserable when he is feeling cruddy and vomity like that! Why can’t the doctors figure it out and fix it! I decided it was best to include a towel and a vomit bowl in his wheelchair supply pack for school. I don’t want to scare the kids by seeing him vomit…hopefully they won’t have to see it…but…this is how life is for us.

First Day

September 9, 2009

Since Ms. T was still not officially authorized yet to work with Aidan, I decided to accompany Aidan to school. As we got closer to the school this morning, it was apparent that parking was gonna be tough. The surrounding residential streets were packed already. With the parent meeting this morning it was extra crowded. Passed by the one handicap parking space they had in the lot and it was taken and blocked by about 3 other cars too. I found a space on a residential street up the hill from the school.

I pushed Aidan around to the front of the school where the main entry gate was open and encountered stairs…nope – can’t go that way. Tried to get in through the parking lot next to the handicap space…nope – gate was locked and cars were packed in too tight and couldn’t get him by. Went around the other way in the front and was able to get in through the side door through the auditorium. Mental note – gotta find out best accessible way to get Aidan in to school.

As we were going in to the classroom, I saw Miss L, the Inclusion Facilitator. I was impressed that she appeared at the school so early on this first day. We went in together and I told her that I was going to bring Aidan with me to the Parent Meeting. As Aidan embarks on this new journey of full-inclusion at a typical school, I feel compelled to show the school that I am 100% supporting my son in this very big endeavor – which means I will be volunteering for class activities, PTA, whatever it takes to show a united, supportive family. But, since Miss L was there today, I decided it’d be more important that we’d stay in the class to observe her guidance. There would be many more parent meetings I could attend. Miss L offered to be with Aidan while I attended the meeting, but I wasn’t quite comfortable to just leave him, so I passed on the meeting. I really like her and am very impressed with how she is good with the follow-thru.

Mrs. S talked to the class about the day and tried to get the kids to settle in. Mrs. B went around and gave stickers to the kids that she observed were sitting nicely and listening…sticker for you, sticker for you….Aidan and I were sitting at the back of the rug quietly. I was eagerly waiting to see if she would do her part of inclusion and give Aidan a sticker…but…No. No sticker for Aidan. Kind of disappointing.

Mrs. S said the class was going to take a tour of the school. She buddied up the kids for the walk around the school. She paired up Aidan with Steven*. Miss L tried to facilitate him getting familiar with Aidan and told Steven that he could hold Aidan’s hand, but Steven turned away and seemed to tear up. I told Steven that he could instead hold on to Aidan’s chair if he wanted, and he still turned away apparently afraid and started to cry. Steven’s reaction tore me up a bit. On one hand, I was a little taken aback that he could have such fear towards my gentle, sweet Aidan. On the other hand, I could sort of see how it was such a new experience for him to be this close to someone in a wheelchair that appears so different from him. So I let him be and we just walked side by side across the school. We got to the upper yard and the teacher stopped at the base of the steps while the line got in order. I tried to break the ice a little with some of the kids and asked another kid, Brian (one of the kids we met yesterday), to see if he wanted to help push Aidan up the ramp. Nope, he didn’t. But…another girl, volunteered, “I’ll help!” Wow…cool….I think that helped break the ice with the other kids, because most of them heard her volunteer. Because when we were coming back down the yard, towards the ramp, 2 girls volunteered to push Aidan down the ramp. Okay…nice, they're coming along…the kids may come around after all??

As we were walking I could hear Steven telling the other kids, “Look he doesn’t move at all…isn’t that weird?” That kind of crushed me. I know that’s gonna happen…but, I guess I have to look at it as needing to educate them about Aidan. Another kid was asking me why Aidan was the way he was. I tried to explain to her that when he was a baby he got really really sick and he didn’t learn to walk and talk. And she made a gasp, “oh no!”.

We got back to the classroom and had snack outside. A few other kids were curious and asked me more questions. Some other kids stared.

Afterwards, we went back inside the classroom, and Miss L came back. I mentioned to her that it would be better to do a little orientation thing for the kids about Aidan sooner rather than later because a lot of kids were already asking a lot questions and were very curious. She ok’d it with the teacher to do a quick Similarities & Differences talk to the kids about Aidan. While she was doing this, the school nurse and supervisor caught up with me. I could hear the kids ask Miss L a lot of questions. When she told them that he will be communicating with a talking computer, I heard one boy, say, “Cool, I want a talking computer!”. They asked about how he eats, and I explained to them about his feeding tube and his feeding pump.

The Assistant Principal and the district access lady came by to catch up with us too. As I was talking with them, the teacher was doing Simon Says with the kids and I could see Aidan smiling and laughing and enjoying watching them jump around. The AP told me that Ms. T should be good to go. Her paperwork should be cleared up and she could accompany Aidan tomorrow. Great news! I was surprised and pleased they resolved it promptly! Yeah!

The day continued with a craft activity and some free-play. After I completed the craft with Aidan, we went into the book center and read some books. One girl kept watching us on and off and would periodically ask me a question about Aidan. How does he eat? She wanted to see his feeding-tube. Was he born like that? For simplicity sake, I said yes. She asked why did god make him like that? Boy, if she only knew how many times I’ve asked that myself! I answered her by saying God makes people in a lot of different ways. Everyone is different.

The physical therapist also came by too. She checked in on us and told us she was going to check the schedule with the teacher so that she could figure out when to schedule in her PT time with Aidan. Geesh…I think we met just about all the people in the chain of Aidan’s inclusion…all on Day 1?! Pretty good start so far!

Kindergarten Orientation

September 8, 2009

Today was Aidan's elementary school’s Kindergarten orientation. It was to be from 11am to 12pm. A letter I received last week said they were going to post the classroom assignments at 10:30am.

Aidan and I arrived right at about 10:30am. I wanted to get there early to meet the teachers before everyone else got there and maneuver him around a little bit to get acquainted. Ms. T, Aidan’s health care assistant, met up with us at the school. Aidan has a district-provided health care assistant to take care of his g-tube feedings. As well, there was no way that I would let him be a part of a "typical" class without a full-time 1:1 aide.

We saw her in the hallway before 11am. I am already very impressed with how motivated, enthusiastic and diligent Ms. T seems to be. Besides spending her own time to come over to our house to get acquainted with Aidan last week, she also volunteered to meet us at the orientation to meet the teachers and get familiar with the surroundings. I am also very pleased that Aidan seemed to warm up to her pretty well. Despite a short time with her in Teacher K’s preschool class last summer, Aidan seemed to remember her.

According to the classroom assignments list, Aidan will be in Room 1, Mrs. S and Mrs. B. These were also the 2 ladies we met when we dropped by the school last week. So far so good, they both gave us smiles and a warm greeting last week…today as well. Mrs. S and Mrs. B co-teach the class, splitting the weekdays. Outside of Room 1, I saw that Aidan’s new gait trainer was already there…good sign – they got his equipment. I pushed Aidan in to the Kindergartener’s play yard and saw they had his stander there as well. Every student had a cubby already labeled with their name. Aidan also had his own labeled cubby. All the signs were good that they were ready for him, and everyone was still pleasant and friendly. I continue to hold a deep rooted fear that this full-inclusion thing is not going to work out well. I fear that the teachers will be unhappy and feel he’ll be a burden. But…so far so good. But…school is just starting tomorrow. We’ll see…

True to what I have come to expect of some Palisadians (demanding, pushy, pretty people with money), while in the school’s main office, I observed one mom holding her sobbing kindergartener on her hip, reeming the Principal for not assigning her daughter to the room she had requested so that her daughter could be with her friends. The Principal was quick to give her the brush-off stating that they don’t take requests, and that her daughter would adapt. That mom was telling him how peculiar it was that her two friends who also put in requests got what they wanted but she didn’t. Come on, Lady! This is a public elementary school, not a private countryclub? Do you really have to carry your very able-bodied daughter on your hip? Out of necessity I've always had to lift and carry Aidan and maybe for the rest of my life I will need to do that. So I do not take these things for granted.

Aidan and I were patiently waiting along the side to introduce ourselves to The Principal while this exchange was going on. That mom left the office in a huff, and The Principal turned to us, apologized and we had introductions. He seemed nice and friendly and happy to see us. I could tell it was a crazy day for him…probably more neurotic parents he’d have to deal with.

Ms. T, Aidan and I, queued up to get into Room 1 and situated ourselves. I looked around and noticed all the pretty blonde-haired, blue-eyed kids, and their camera-clutching, ecstatic, proud parents. I felt a little inadequate because I didn’t bring my camera! But, I didn’t think this orientation was for the kids too…and it seemed many Moms and Dads were there. As I looked around the classroom, I noted that they had his Special Tomato seater (for the floor activities), and also had his Table-Mate (the inexpensive, adjustable non-special needs table that I referred the physical therapist to - for about $30 it was a complete steal compared to similar special needs equipment). I also noticed that besides Aidan and maybe one or two others kids, everyone else was WASP. But… it’s the Palisades, goes with the neighborhood.

One mom and child introduced themselves to us…daughter – Cassandra*. They also live in The Highlands. Mom said she had seen us at The Summit Club before. Pretty cool coincidence! We're pretty easy to identify because we're probably the only family with a child in a wheelchair going to our clubhouse pool.

We sat in the back and Mrs. S explained a few particulars about the class and got through some administrative stuff. She then called for all the students to gather around her on the rug and she was gonna read a story. Ms. T slowly pushed Aidan closer so that they could be with the other kids and hear the story. I was very impressed that she did that without my prompting!
When things concluded, Ms. T and I checked out the restroom for Aidan’s changing needs. As we were doing this, another parent and child introduced themselves to us. Son – Brian*. It was very nice of them to make a point of introducing themselves to us. Dad was real nice and said Brian would be a good helper. Very cool, huh? We also met another family, whose daughter's name was Jill*. And…turns out that the mom that made a big stink about her daughter not being with her friends…is in Aidan’s class! Daughter – Ava*.

Mrs. B took us to what would be Aidan’s restroom, as it had a table for changing and also a toilet…for Ms. T to use. It was the “Faculty Men’s Restroom”, but apparently there were less than a handful of men that worked there. It was a little far from the class, but should work out ok.

Afterwards, The Principal introduced us to the Assistant Principal. With all the district budget cuts, she was only gonna be at Aidan's Elementary School part-time, splitting her time at another school. Ms. T thought she was pretty good. The Assistant Principal seemed to be on top of trying to resolve the issue of having Ms. T's transfer be official so that she could be Aidan’s aide. Ms. T seemed really worried about having all the paperwork resolved so that she could start with Aidan tomorrow. If it wasn’t resolved, she was gonna have to report to her old school until it would be. I like that she is so gung-ho about working with Aidan. She’s got good follow-up and follow-through. I think she’ll work out great for Aidan.

My To Do List: 1) follow-up with Special Ed Nursing Supervisor to resolve the administrative issue of getting Ms. T to be with Aidan; 2) follow-up with Transportation about the bus. The Principal said, since we live in The Highlands, Aidan may be the only one on the bus…Fine with me! A direct, express ride! That's what I was secretly hoping for!

I cross my fingers for a good school year. New experience for everyone all around…
Aidan did well today…no noisy breathing, no vomiting, not a lot of posturing and stiffness. All good signs…

Why BLOG?

September 6, 2009

Ever have that feeling of helplessness when your child is sick or in pain? You know you’re doing everything within your power to make them feel better, but you still can’t help but feel helpless and inadequate. I struggle with these feelings everyday. My son, Aidan, is completely trapped in a body that doesn’t work for him. He suffered severe jaundice as a newborn and he is now unable to walk, talk or eat by mouth. Thus far, I’ve privately endured the roller coaster ride of raising a special needs child. I am grateful to have tremendous support from a great husband, loving grandparents and a conscientious nanny. My husband and I are very active social people and we enjoy doing and experiencing things. And as much as possible, we’ve included Aidan in all our family activities. Dining out (even though Aidan doesn’t eat), playing tennis, skiing, swimming, enjoying the beach, vacationing – Aidan is included in all that we do as a family. So up until now, Aidan has attended a special ed school for his preschool years. But, in three days he will embark on the unpredictable path of full-inclusion with “typical” kids at our local elementary school.

Even though his comprehension may not exactly be at his age-appropriate level, Aidan is so cognitively aware that I think it would be a disservice to him to keep him in special ed. His preschool class had a few peer models (typical children) part of the class and it was very inspiring and motivating for Aidan to be with these walking, talking, kids his own age. And, one of the best things I believe I’ve done for Aidan is provide him with a younger sibling. Connor, his 3 ½ year old brother, has been a wonderfully positive influence on Aidan. He gets more exposure to kid stuff – TV shows, characters, development of language and the learning process. I fully believe too that, having Aidan as his brother has made Connor a more sensitive, affectionate and giving person.

Thus, I approach this new journey of full-inclusion for Aidan, with a lot of fear and anxiety, but I also have high hopes; which is why I’ve decided to BLOG about it. I know that I’ve taken a big risk with taking him outside the protective and secluded bubble of his special ed school. But, we’d never be happy with keeping him in seclusion. As Aidan is an active included member of our family, we’d like for him to also be an included member of our local community. When I am out with Aidan, I know that people stare, talk behind our backs, look and wonder with curiosity. But, I hope that in time, those stares and snickers will turn into friendly greetings and exchanges.

This BLOG may offer readers a peak into our daily lives. It may shed light on human nature. It may delight you or it may offend you. But, what this BLOG truly will be is just my personal perspective on our life experiences.

Background

To get a better understanding of our unique perspective, it helps to understand our local environment. We moved to Pacific Palisades in December of 2005. Pacific Palisades is an affluent, upscale zipcode that often gets an eyebrow raised when mentioned, much like the mention of Beverly Hills or Palos Verdes. This predominantly White community, touts a median home value of $1.9MM and a median household income of about $140K. How many families with a severely disabled child are living in the Palisades? We may be the only one? We chose the Palisades because of its proximity to the ocean, and convenience to Kevin’s office in Westwood, and the newness of our particular neighborhood, The Highlands. The Highlands is a small community tucked away behind a canyon built along a mountainside. In terms of planned, cookie-cutter communities, The Highlands is just a notch below, Irvine, the gold standard of planned communities. It’s kind of like having a bit of Orange County in L.A. And, the main reason why we chose our particular house was because it has an elevator…for Aidan. Our house is 3 stories with garage on first floor, living room and kitchen on second floor, and bedrooms on third floor. Besides being hugely useful for getting Aidan up and down from floor to floor, the elevator has proven to be really handy for groceries and heavy luggage.

To me, the Palisades is a rather intriguing and eccentric community. Even though we’ve lived in the Palisades for almost 4 years now, I still feel like an outsider. As I started to take Connor, my youngest boy, out to local parks, and to Mommy and Me classes, I started to get a real flavor for life on The Westside. Having grown up and lived on The Eastside (San Gabriel Valley) most of my life, The Westside to me is anything west of La Cienega. We’d go to the local parks on the weekday mornings and see lots of little blonde-haired, blue-eyed tots with their Spanish speaking nannies. We’d pull into a parking lot of a Mommy & Me class and encounter every kind of luxury SUV out there…Mercedes, Lexus, Cayenne…all outfitted with at least one Britax carseat. Sprinkled among the attorneys, financial advisors, and entrepreneurs, are the entertainment types. Connor’s toddler class teachers were teachers by day and actors by night. My tennis class had writers, directors, even the instructors were wanna-be actors. I run into the wives often during preschool drop-off hours. They are usually dressed in workout clothes and face in full make-up. The moms all seem to know each other and tend to be rather cliqueish.

Obviously, this community will have its perceptions, prejudices and social barriers. Nonetheless, because of my unique family, I may always feel like an outsider.