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Achilles Kids – Upcoming Free Events, July 2011
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Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex
As I picked up pieces of mushroom from the bathroom floor, I noticed that my foot was bleeding ever so slightly – I must have missed another tiny sliver of glass. I silently (okay, not so silently) cursed Corelle, makers of the supposedly unbreakable dishware. The only thing that kept me from becoming hysterical was brainstorming potential titles for my post this evening, because I sure as hell had a story to tell.
It started off as a Medium kind of day. James had a medium morning, not thrilled to get up but not upset enough for any theatrics. My 2 year old discovered bras today, and spent the morning putting bras on herself, her head and every stuffed animal in sight. Only medium cute after she got two clasps stuck in her hair and bent them – I don’t have that many bras. My cranky, crying, screechy, teething 8 month old was having a not-so-great day, but one out of three isn’t that bad – it’s almost a given that at least several days a week, one of the three kids is going to have a not-so-great day.
So let’s fast-forward to see how things got from Medium to Extreme (see Patience and Foortitude Part 2: Extreme Parenting).
3:00pm
I picked James up from school and we paid our fifth trip in a row to Walgreens. The pharmacy had misplaced one of his prescriptions I had dropped off the week prior, and because I might sell Vyvanse on the black market we had to have a whole new prescription written and mailed in. The pharmacy called our neurologist (who for now shall remain nameless) last Tuesday, June 7th, but apparently they did not mail a new script until Friday, June 10th. Monday, June 13th rolled around – still no script, and now I had run out of Vyvanse for James. So, since Monday we had been making a daily pilgrimage to Walgreens to check for our prescription, and when it wasn’t there, pick up a single pill to tide us over.
Today was no different – the mail from “Friday” still had not arrived. We waited for 15 minutes for our single pill, and I left with a medium amount of frustration. Let’s be honest, 15 minutes in “Multiple Kid Time” really feels like at least an hour. I mentally added another 30 minutes because I had a fussy teething 8 month old baby strapped on.
3:30pm
On our way home James stops to stare at a beggar sitting outside of Duane Reade. The man calls over to him and James, instead of walking away or toward him, just kind of stands there and stares. I give him a little poke in the back to keep things moving (my 8 month old is still crying and my 2 yr old has stripped down in the stroller to her diaper at this point) and James, in his usual style, reacts as though I have stabbed him.
He is still kind of grumbling about it as I carry the stroller into our building. An older woman is holding the door and as we walk through James explains to her, “It really hurt when my mom nailed me with a nail in my back.”
4:30pm
Homework done after only an hour of prodding. Baby still screaming – nursing, laying him in the crib, carrying him around, even the plastic cup of water is not distracting this guy. I can tell the noise is getting to James because he repeatedly claps his hands over his ears, none to gently. For those of you who have not had the pleasure, my 8 month old sounds eerily like an amplified tea kettle when he is screaming. It is truly an ear-shattering experience for anyone, let alone James and all of his noise issues.
5:00pm
Husband working late for the 6,893rd day in a row (in “Multiple Kid Time” this is not an exaggeration). Despite continued screaming, I try to make the best of things and let the kids help me cook dinner. James and my 2 yr old get into a fight over the pasta and spill the full strainer into the sink. I put some pasta on paper plates for them and set them up at the other counter. The sink looks clean enough – pasta goes back into the pot.
5:20pm
I walk into the kitchen where my 2 yr old is working on her second banana. She looks up with a guilty expression on her face. I see more pasta and half a peach on the counter. There are banana peels on the floor and banana juice everywhere. Banana juice? Wait a second… my daughter has already dashed from the kitchen as I realize what has really happened. There is a pair of pink underwear on the kitchen floor too. Banana juice, good grief – I must be losing it. I get the Windex out.
5:35pm
The baby is finally down for a nap. Kids are helping to set the table. My daughter grabs a stack of bowls and runs out of the kitchen. “Come back here,” I call. “We need to put food in those bowls!” She tears back into the kitchen and promptly drops the bowls on the floor, where they all shatter. In an effort to escape the situation, she runs back out of the kitchen, through the broken glass. Corelle, I am very disappointed in you.
Miraculously, her feet are untouched. I wish I could say the same for mine.
5:55pm
Glass cleaned up – I even re-Windexed the floor after sweeping to make sure I got all of the tiny pieces. Baby still napping – hooray! I feel bad about losing my temper over the bowls so we make Shirley Temples together for a special treat. We sit down for dinner – James and his sister fight over seats and the last remaining glass bowl. I eat from Bob the Builder plasticware.
6:15pm
I go to start the shower for James and stop dead when I open the bathroom door. There is poop on the floor in front of the toilet – ugh. I hear my 2 yr old running away as I call out,” Who had an accident?” (I would’ve run away too at this point.) Apparently she has decided to clean out her own potty chair and this is the result. I go back to the kitchen for some plastic bags. And the Windex.
6:30pm
I am sudsing James up in the shower when tragedy strikes. Some water gets into James’s ear! He goes crazy and the shower now becomes a soap-crazed wrestling match. Shouts of “You’re getting me wet!” and “Don’t touch my ear – you’re hurting me!!” can be heard throughout the apartment, and there’s no telling which one of us is yelling what.
The baby is woken by the shower extravaganza.
6:31pm
I carry my 8 month old out to the dining room. My 2 yr old is sitting at the table with a bottle of Windex and a roll of paper towels. The table is covered in pools of clear liquid. The bag of bread and tub of butter is covered in Windex. The mail is soaked through. The dishes are wet. I put my daughter into time out, put the baby down and get to work on the mess – they both immediately start screaming.
6:45pm
I grab the baby and go to get James out of the shower. James is happily standing in the shower coating himself in daily shower cleaning spray. He is pretending it is a gun of some sort, and seems kind of annoyed when I interrupt (very loudly) “What are you doing???!! Put that down!”
I re-shower James as my 2 yr old comes in to poop again. This time I am there to empty the potty chair for her. Or so I think. As I straighten up with the bowl in hand (and baby in the other), my daughter tackles me, screaming “I can do it my big girl self!” The bowl spills all over the floor. I put her back into time out, send James to his room to get dressed, and put the baby down again. Complaints all around. I go get the Windex.
7:15pm
We are all seated back at the table, playing a makeshift version of Pictionary before bed (I am working on a post that explains the modifications I make to regular boardgames for James). James draws a great insect and my daughter makes four circles for “Four Eyes.” They both guess that my golfer is a woman sweeping. I fill two little cups with mini-marshmallows as a joint dessert/prize for kicking my butt. I feed the baby a late dinner of yogurt and pasta.
7:45pm
I am sweeping up the kitchen and dining room while my daughter follows me around whining, “Hold me, mommy, hold me.” I am already holding her brother. I compromise by singing all of the songs from The Little Mermaid as I sweep. James joins in – it is a sweeping success.
8:00pm
I give James his medicine and send him to wait in his room while I put the leftovers away. My 8 month old is quiet now, as long as I am holding him. As I silently congratulate myself on my one-handed mastery of packing food away, he casually swats the tupperware, sending it crashing to the floor below. Pasta, sausage, mushrooms, onions and tomato sauce are everywhere. I place him on the floor. He starts to cry while simultaneously eating as much pasta as he can get his hands on. I get out the Windex.
8:30pm
We are all camped out in James’s room while I read The Magician’s Nephew to him. Against direct orders, my daughter is repeatedly jumping off of James’s bed to make her little brother laugh, and is succeeding. She accidentally kicks him in the head. I put her in time out. I finally finish the chapter with two babies in my lap, sniffling.
8:35pm
I tuck James in and we all have an “air-kiss battle” for a few minutes, where we see who can smack who out of the room with the best air-kiss (think Mario meets Star Wars). James wins, much to my daughter’s dismay. One kid down. My mood lightens considerably.
9:00pm
I am laying in bed with the two babies, reading Goodnight Moon for the third time in a row. There is a light at the end of the tunnel – I’ll read this book sixteen more times if it means more peace and quiet followed by sleep. Thankfully, it takes only one more read.
9:45pm
I sneak out of my room and duck into the bathroom. I step on something soft and squishy. I take a deep breath and look down. It’s a mushroom. Huh? On further examination I can see at least half a dozen sliced mushrooms on the bathroom floor. I also notice a red smear on the floor and realize it’s coming from a piece of glass still stuck in my foot from earlier. I grab the Windex.
St. Patrick’s Cathedral and the luck of the Irish
I’ve always been a tiny bit concerned about James making his sacraments. Being from a huge Catholic family, sacraments – Baptism, Penance, First Communion, Confirmation – happened nearly as often as birthdays, and more people usually showed up to celebrate them. With the exception of baptisms, the sacraments required at least a year of religious ed in a classroom full of children, special preparation for each sacrament followed by testing, and a big ceremony in a church with lots of other kids. Penance involved confessing your wrongdoing/sins to a priest, Communion was consuming the Body and Blood of Christ, and Confirmation involved receiving the Holy Spirit. Perfectly suited in so many ways for the special needs population.
My mom says that James is special and guaranteed a place in heaven no matter what sacraments he receives. I wholeheartedly agree with her. But as I had more children, I began to wonder – what would James think as he saw each of them make the sacraments? Would he feel left out? Would he miss out on a tradition that every other member of our family had experienced?
Every time we moved and changed churches I asked the priest about the possibility of James participating in a modified religious ed program or us preparing him for sacraments at home. It was at our most recent parish, Ascension Church on the UWS, that the priest finally referred us to some people who could help us. We found out about a confirmation service for disabled people at St. Patrick’s Cathedral. It just happened to be the day after the Central Park Challenge – a weekend of celebrating disabilities – so it worked out perfectly.
The service was beautiful and professionally run, as to be expected at a place like St. Patrick’s. It would probably be a little bit boring, especially to my non-Catholic readers, to hear all about the ceremony. So that’s not what this post is really about.
Not unexpectedly, the confirmation was filled with disabled people. James was on the younger side of the 28 others who came to be confirmed. Each special needs candidate sat with their sponsor and immediate family in an assigned pew in the front of the cathedral so that the Archbishop could personally walk over to each of them instead of trying to line everyone up.
Though it has been over a decade since I entered the special needs universe, it still amazes me to see how many manifestations a disability can take. Disabilities truly know no prejudice – families large and small, young and old, black, white and brown, were all seated pew by pew with their loved one. Some candidates were more obviously disabled than others – James was somewhere in the middle, I think. Occasionally, there would be an outburst of noise from a candidate or a quiet scuffle from one of the pews as parents worked to keep their children calm and comfortable. This was a place where nobody stared or looked surprised, annoyed or even interested. We’d all been there, done that, in one way or another. We were seated in front of another family with 3 children – they were somewhere between the ages of 7-16. The middle of the three was a boy with down syndrome, maybe 12 or 13 years old.
After everyone had been confirmed, the Archbishop again walked to each pew to personally give each candidate communion. As Archbishop Dolan moved on from our pew there was a commotion in the aisle beside him. A teenage boy paced up and down the aisle. He was quite ordinary looking aside from the shoe he clutched tightly in his hand, and was chewing on. His movements were jerky and anxious, and I felt my own heartbeat increase as I watched his caregiver approach him and coax him back to his seat. It took some work, too. My heart went out to that family, and I looked over at James, who had been sitting peacefully through the entire service and was watching the scene with interest.
As the boy in the family behind us received communion, the teenager wielding the shoe jumped up again and had to be guided back to his row, with some effort. Being in the front of the cathedral, it was hard not to be a show-stopper to some extent. As the Archbishop moved on, the mother in the row behind us began to cry quietly into a tissue. Her daughter, the oldest of the three, put an arm around her and gave her a kiss. “It’s okay, mom,” she said. “I love you.” The mother said through her tears, “We are just so lucky. Our family is so lucky.” I felt tears in my own eyes. When was the last time I had thought about our situation as lucky?
As we packed up to leave after the service, the mother commented on how well-behaved our children had been during mass (my 2 yr old was with her grandparents in the back) and commented on what a beautiful family we had. I said thank you and congratulated them as well, but I’m sure they don’t realize what I was really saying thank you for.
Central Park Challenge Recap and Photos
So here is one of my first posts with photos (took long enough, right?), all of them borrowed from the YAI website so far. I want to make sure to share as much of the experience with you as possible – it was that good!
To the left are James and his friend Will – they were standing along the finish line to cheer on our team members in the 5K run. And James is shamelessly posing with our team sign. We had to write our sign by hand for the second year in a row because they “corrected” our premade one to say “The Force,” with only 1 “o.” Well I never….
As usual it was an amazingly fun time (despite some trouble getting coffee in the wee hours). Our runners went first and all did well. My little brother beat his big brother’s record from last year, and one of our runners placed first in her division – go Kim!
As you can see from the pictures, we really did take anyone onto our team (our team’s dog was not the only one in a walk shirt, either) .
We knew better what to expect this year, including how slowly the walk would move with such a huge crowd participating, so I was less impatient this time around (and less pregnant). And, the weather was really perfect for the occasion – mid-70s and sunnyish – so we weren’t moving slowly and cooking like last year.
After the walk was the Jr. American Races. My 2- year old showed up late (the walk really does move slowly) so she raced in the 4 yr old division but since everyone got a medal she was thrilled anyway.
We had a lovely BBQ picnic at a nearby playground afterward (lovely except for the giant raccoon casually sauntering up to people) and said our goodbyes. All of that fun and it was only 1 o’clock!
Yep, you should have been there. Maybe next year! The Foorce raised $1100 this year, which was only a drop in the bucket of the $1.6 million raised overall! We almost doubled our team size from last year, a trend I would very much like to see continued. For more details about the Central Park Challenge on June 4th and a lot more pictures from the big day, click here.
We’ll definitely be back for third helpings next June. There is nothing in the world that makes me feel less alone and more inspired than watching thousands of runners, walkers, men, women and children (and dogs) get together and pay tribute to a common cause, especially one so close to my heart. It really helps me keep things in perspective when I see how many people are going through the same thing we are in one way or another. Yet we were all able to be there and we were all there to celebrate – amazing! Regardless of our abilities, we had a lot in common and a lot to be proud of on Saturday.
Go Team Foorce! (still looking for a team photo to insert here, hint hint)
There’s still time to join The Foorce on Central Park Challenge Eve!!
I know you are probably wondering how the meeting went today (see Dirty Laundry post) – I plan to tell all when things aren’t so chaotic but right now I want to make sure I get one last plug in for the Central Park Challenge, which is finally upon us!
To recap: This is one of my favorite things. Last year was the first year we tried something like this, and being 6 months pregnant with a toddler and a disabled child in tow I was a little nervous. I am so glad we did it – we had an awesome team and the whole day was really fun. Some of us did the run (NOT me) and another group of us did the walk, which started shortly afterward. There was also a child area with races, games, and face painting, and lots of free giveaways. Seeing the huge crowds of people gather for the same cause was truly touching and motivating.
This year we have an even bigger team – it looks like 20+ of us so far. The event is open to all ages – my 8 month old, 2 yr old and 10 yr old will all be joining us in the walk and my 2 yr old is also going to try the junior races later in the morning. I hope you will consider walking or running with us – it’s exercise while supporting a truly worthy cause, a great way to start off any Saturday. Here is our team page – http://support.yai.org/site/TR/Events/CPC2011?team_id=14203&pg=team&fr_id=1090 – scroll down until you see the list of team members and click Join Team to join us. The more the merrier!
Upon joining I will email you with details on where to meet up with our team. You can also come to the park between 9:00 and 11:00 AM to find the crowds and cheer us on – we start by the Bethesda Fountain (enter at 72nd). I would LOVE to see a couple of “Go Foorce” signs out there! Or, if you can’t be there but would like to support our efforts, there is a Support The Foorce button too. Any donation, even $1, makes a difference toward our goal!
I plan to win the walk for my division – Moms Wearing Two Children.
5 K to run, 4 days ahead, 3 K walk, 2 parks we must be, and a very busy weekend ahead
Okay, before reading on, take a second and sing from “5 golden rings down to the partridge in a pear tree” using the text from the title – makes much more sense now, I know. It was actually pretty easy to figure out but I ran out of character space when I tried the title from 10 drummers drumming so there it is.
Moving on, the weekend ahead is busy enough to be intimidating, but also full of fun stuff. And some not fun stuff. Kicking off with tomorrow’s meeting at James’s school (see my Dirty Laundry post for details).
Followed by the Central Park Challenge on Saturday (see multiple posts or click the link to join, already!) – we surpassed our fundraising goal and have over 20 people on our walk and run teams. Our team name is The Foorce – creative, I know. (At least the last sentence wasn’t a fragment.) In any case, it will be loads of fun but a very early start to the day.
Sunday James is making his confirmation in a special ceremony for disabled people at St. Patrick’s Cathedral. Another awesome event, another early morning. Another fragment (it’s late!). Also Sunday is our usual special needs baseball game at Riverside Park.
Monday James will return to class if all goes well tomorrow. Despite my trepidation about the students, the teachers and administration have been nothing but supportive and sympathetic so I am cautiously optimistic that it will be okay.
Tuesday, after I update all of you as to how everything went I plan to sleep for a week! Wait, James has a half day at school…. never mind.
Thefoorce.com’s first survey is here!
I would be very grateful if you would take my first ever foorce.com survey – it is on the right sidebar under Click Here.
It will help me to decide which directions to pursue first as this site grows, and will hopefully help you in the process!
Your input is extremely valuable to me, and anonymous – please answer what questions you can and spread the word to others in the special needs community. Thanks in advance for your time and effort!
PS – There will also be a weekly poll to the right – after you vote you can see the results. Polls will often be related to a recent or upcoming post.
On Your Mark, Get Set….
Yesterday started the beginning of a very busy, chaotic, unscheduled period for James. If you know anything about people with ASD and the importance of schedules you know I’ll probably have a lot of material to draw on after the next few days. Yesterday was Field Day at school, a.k.a lots of competitive team sports games in Central Park a.k.a lots of 4th grade boys yelling over who made who lose and who is the best in 80 degree heat a.k.a potential for a complete and total meltdown by James.
On top of all of his issues James is also physically disabled – he truly can’t compete with his 2 year old sister, let alone a bunch of 4th grade boys who think that winning the tennis ball on a spoon relay race is the only thing that matters today. To further complicate matters, James doesn’t realize that he is not as good at running with a tennis ball on a spoon as everyone else, so he doesn’t understand why anyone would accuse him of “losing the race” for his team. James also doesn’t understand the game rules and will often be accused of “cheating” or think someone is “trying to steal the ball from him.” All of these issues have come up in several gym classes this year – in fact, gym is one of the most difficult yet favorite days of the week for James. It is as if he thinks it is going to be different every week, that he will be able to keep up with the other kids if they just change sports, or months.
Just like James doesn’t understand that he is not able to keep up with the NDI dance moves that the rest of the 4th grade has learned for their big end of the year dance performance today. Performances, I mean, three of them. Thinking about James making it through the day in one piece sends a thrill of fear through me, especially after watching his mid-year performance in December. The NDI program at PS 163 is really neat, and the performance in December was entertaining and impressive. There was a lot of cheering, loud music, fast dance moves, and “I can’t hear you” action going on, and though many people came up before and afterward to tell me how impressed they were with James being up there, it was heartbreaking to watch him “fake yawn” his way through the entire event. A fake yawn is James’s way of crying but pretending that he isn’t – he does it more and more as he gets more upset and it is killer to watch from afar. As his parent, his advocate, and his cheerleader it was incredibly hard to watch him struggle to keep up with everyone on the stage during the dances, and then watch him struggle to stay composed in front of everyone as they took turns screaming louder and louder for their favorite teacher, dance or just to cheer in general. The worst part was when they called James’s teachers’ names – his class screamed really loud, and James, determined to fit in, screamed really loud too, while sobbing. Ugh.
Afterward, James told me he had a great time and genuinely seemed proud of his performance and for staying up there through the entire event. I on the other hand questioned every decision I ever made to put him in a “typical” environment. Though it hasn’t been a perfect fit and it was a very difficult decision, my husband and I have always fought to have James in a public school CTT class so that he could be around typical peers and learn typical social interaction firsthand. Does James feel like he has to fit in at the expense of his comfort and happiness? Does he want to do be around these kids? Does he know he has a choice other than suffering through what other people enjoy? Or, is it good for him to learn how to fit in and for him to learn how to “deal” in uncomfortable and scary situations, a.k.a real life when mom and dad aren’t around? You have just visited my stream of consciousness during James’s fake yawn sessions.
Friday is a field trip with the 4th grade. Field trips make me nervous on many fronts. Will James remember to go to the bathroom? Will he be okay on the school bus, or worse yet, the subway (We have had some scary incidents with James stepping into the space between the platform and subway)? Will there be any performances or loud noises on the trip? Will he eat anything all day or be too excited and forget? Will anyone hang out with him or will he be all by himself on the trip?
James is very excited about NDI today and about his field trip tomorrow. If I ever dared suggest he sit out field day or NDI or a field trip he would be very upset. James is also excited when we say we’re going to a fair, amusement park, or beach until we get there and he realizes that there are balloons at the fair, fast rides at the amusement park or waves in the water at the beach.
So back to yesterday – field day at Central Park. I didn’t want to show up unless I was needed because often James is fine until he sees me and then he feels more comfortable getting upset – I’m sure many of you have experienced this phenomena with your own children. So I stationed myself at a nearby playground in Central Park with the babies and waited to see if anyone would text me with “Come get James.” Nobody did. When I went to pick him up from school his teachers told me it went really well. James told me on the way home that “it was close” on his tug of war and ring toss, and that he almost made some baskets in basketball. We talked about how winning wasn’t important and he seemed okay. No dramatics, no tears. The end.
So maybe I’m overreacting – maybe it’s not as bad as I think it is, maybe James has just grown out of it. Honestly, I don’t think so – did you read my post about last weekend? I think his teachers were as pleasantly surprised as I was yesterday. I think his awesome para (his aide at school) is a big part of the reason he did so well and she won’t be able to sit on stage with him during NDI. I am still nervous as hell about today, and I have a pit in my stomach when I think about James getting through all three performances with the cheering contests, loud music and fast-paced dancing.
I always say that my biggest goal for James is for him to learn life skills – coping skills and social skills – so that when I’m gone he is able to have relationships with others and deal with real life when I’m not there to shield him from it. Well, these are the beginnings of that goal becoming reality – it’s time to put my money where my mouth is. And what’s the worst that is likely to happen? It will probably be okay, even if there are tears and a bad night or two involved. Probably, like James, I need to learn how to let go and just get through it sometimes.
The Foorce 
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