Archive
Swing a Ring tomorrow at the Hudson Beach, July 5th at 1p.m.
I’m back! There is so much to tell but first I must attempt to unpack – we definitely give “sand-bagged” a whole new meaning.
Before I post all about our amazing adventure-filled vacation I wanted to remind you about our little get together tomorrow, July 5, at the Hudson Beach. Enter Riverside Park at 104th and walk toward the water – you’ll run right into it.
I got 3 emails while I was gone about people coming for a grand total of around 10 people. I’ll probably bring some cookies to share and drinks for the kids. And sand toys – I won’t even bother unpacking them from our trip. And sand – we will still have plenty of beach sand to share no matter what effort I make.
For those of you who have no idea what I’m talking about, we are taking our school-year “cafe meetings” outdoors this summer, starting with a potluck picnic at the Hudson “Swing a Ring” Beach (swingaring.com) tomorrow at 1p.m. If you come feel free to bring snacks, sand toys and/or lawn games to share! Or just stop by and say hi. Don’t be shy, it’s not formal and I’ll be there with the kids one way or the other.
Having a disabled child, friend or loved one is not a requirement to come hang out, though it will be a recurring theme :). If you can’t make it tomorrow but want to come next time, we are meeting at the Natural History Museum sprinklers this weekend (see the July Adventures post).
I plan to write all about the past week as soon as everyone is asleep tonight, though the kids are on “beach time” so that might turn into tomorrow. I also came back to a fabulous list of topics that I can’t wait to share with you.
I hope everyone’s summer is off to a wonderful start and that you are enjoying a very happy 4th of July!
A Look At What I’ll Mean-To-But-Probably-Will-Not-Have-Enough-Time-To Post In The Week Ahead: 6-20-11
I have so many posts half done or on The To Do List, not to mention the inbox full of great ideas from other people and the survey results that I have been sifting through. Sometimes a to do list is therapeutic but sometimes it’s just kinda mean.
Let’s just cut to the chase before I fall even further behind. Upcoming this week (fingers crossed):
Curious George at CMOM – A look at the exhibit from three points of view – the toddler, the special needs child and the parent who brought them both.
My Children the ABA Therapists – We are the first ones to proclaim the wonders of ABA therapy. So why is it that I cringe every time I walk by a balloon vendor?
Family Beach Vacation with your special needs child ( Part 1 of the How To series)- One week and counting! Every time my husband has worked late and I’ve had a long, hard day with the kids I make myself feel better by preparing for our amazing beach vacation-to-be. Needless to say we are Prepared. Be amazed (or appalled) at my supplies, packing lists and itineraries that anticipate even the most special of special needs, while still leaving room for spontaneity (it’s scheduled in).
How to ignore your special needs child (Uncomfortable Subjects Part 3) – If you think I have a lot to say, then you haven’t walked James home from school. Don’t judge until you’ve been there or read this.
Sneak Peek at Fall speakers 2011-2012 season – I know it seems like a long way off, but you’ll want to make time for next year’s meetings. We already have 6 amazing speakers/programs lined up! And, some of your favorite speakers from this past year are joining forces (I am letting this double “oo” opportunity pass me by out of respect for them) this year for some especially awesome opportunities. I hope I can tell you more about this soon!
Also keep an eye out for info on parenting match-ups (like a dating service for special needs parents), a sibling support group, a free giveaway (in the works) and my review of the Harry Potter exhibit in Times Square. And, I believe that The Foorce will reach 20,000 views this week (since it’s inception in March), unless everyone gets frustrated with my “to post” lists that never get crossed off. Thanks for making me feel important – it’s a good thing I come from such a big family!
It’s the last week of school. Then James will be home and things will really be busy (not like they are now) so I am extra motivated to knock things off of this list. And remember, if you subscribe you will be notified about all of the above posts automatically, and any tangents I go on in the meantime.
Happy Summer’s Eve!
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.
A Look At The Week Ahead 6-12-11
Shockingly, I didn’t get to post everything I meant to this past week, but that didn’t stop me from adding six zillion more things to my “To Post” list (my husband hates when I exaggerate numbers like this, but in my opinion I am barely stretching this one).
I partly blame the MLK Health Center for getting me behind schedule since I had to devote so many hours to being on hold, and then even more time to complaining about it online (see Shame On You MLK Health Center). But in reality it was also because I was doing some covert behind-the-scenes work on this blogsite (to keep the magic alive). And, the kids don’t care about making time for my personal business unless it involves changing diapers, reciting Goodnight Moon or making rice krispie treats (peanut butter and plain).
So, here we are – Sunday night and I’m already behind. James has another half day at school tomorrow, which is just a waste of a day for both of us in my opinion – he also had one last week and a day off on top of it. It would be nice if we could just end the school year a little earlier, but hey, I’m all for dragging it out as long as humanly possible since I’ll be in the one percent of New Yorkers with 3 whole kids home this summer.
So, in the spirit of dragging things out, here is my list of the topics I plan to post in the week ahead:
St. Patrick’s Cathedral and the luck of the Irish – My long overdue story from James’s confirmation service last weekend.
Curious George at CMOM – A look at the exhibit from three points of view – the toddler, the special needs child and the parent who brought them both.
Deal Alert! I snagged some discounts from special needs stores and providers to pass on to Foorce.com readers – watch for details to be posted later this week!
My Children the ABA Therapists – We are always the first ones to say how amazing ABA therapy was for James, but who’s training who these days?
Going to the beach with your special needs child – Yes, we are. Though the trip is still two weeks away, I’ve been ordering supplies for the last month. Watch me whip up packing lists and itineraries that anticipate even the most special of special needs, while still leaving room for spontaneity (it’s scheduled in).
July Calendar for Summer Social Group – I’m still working on the calendar feature for this site, but July’s meetings are tentatively set and include potluck picnics, outdoor music events, special needs museum trips and lots of water fun. Hey, I figure if I can accommodate my family’s special needs beach trip, this meeting group should be a cinch.
How to ignore your special needs child (Uncomfortable Subjects Part 3) – Don’t judge until you’ve been there or read this.
Sneak Peek at Fall speakers 2011-2012 season – I know it seems like a long way off, but you’ll want to make time for next year’s meetings. We already have 6 amazing speakers/programs lined up! And, some of your favorite speakers from this past year are joining forces (I am letting this double “oo” opportunity pass me by out of respect for them) this year for some especially awesome opportunities. I hope I can tell you more about this soon!
Aside from the half day, there should be more time to post everything this week. But be warned, I am having trouble getting one of James’s prescriptions refilled and I also need to schedule two more appointments for him. Thankfully, neither of them are at the MLK Health Center (the grudge will eventually fade, I swear).
Have a great week!
The weekend is over? What? Nononononononono!
The reaction seems ridiculous, doesn’t it? The weekend came to an end, just the same as last time. There will be another weekend someday soon, and if I play my cards right it might be even better than the last one.
Okay, now go back and plug in “computer time” or “Wii time” or “Sleep time” or “couch time” in place of the weekend, and also take me out of the equation and plug James in. Then add a shocked expression when the time ran out, a lot of loud pleading then yelling when he realizes there is really no more time, a bunch of stomping that sometimes results in James falling, 5 minutes of timeout and a cherry on top.
Here is a very specific instance that we go through at least once a week:
6:45AM
Me: “James, you have 5 minutes and then it is time to get dressed.” James: “Okay.”
6:55AM
Me: “James, just one more minute and it is time to get up.” James: “Okay, just one more minute.”
7:01AM
Me: “James, time to get up. Please go to the bathroom.” James: “One more minute.” Me: “No, it is really time to get up now. Please get up and go to the bathroom.” James: “No. I don’t want to.”
At this point, James usually pulls the covers over his head. I walk over and pull the covers off at which point we have a short tug-of-war. I win, to which James responds “Nonononononono” at an incredible volume considering he is so tired. I pull James up out of bed and direct him to the bathroom, the entire time James complaining loudly, “Ow, you’re hurting me” or “No, I’m too tired” or my personal favorite “It’s too hard to listen to you!” Every time James screams or refuses to take the next step, standing up, going to the bathroom, putting his underwear on, he gets a “strike.” Three strikes and he loses a privilege like playing Wii, watching TV, etc. The punishment sometimes puts an end to the situation, but about half the time results in more volume and more protests. To add to the event the noise often wakes my husband or the baby, neither who are pleased to be woken in this way.
The second example happens at least 3-4 times per week, and usually occurs when we want James to stop doing something – reading, playing video games, watching TV, but can also occur when we want him to start something – take a shower, get dressed, go to the bathroom. James needs a lot of prep leading up to the starts and ends of activities. A LOT. The 5 minute warning equals 10 real-time minutes, the 3 minute warning equals about 5 more and the infamous 1 minute warning equals about 5 more. After every warning, “5 minutes to shower time,” “1 minute until you turn off the computer,” “when you crash, Mario is turned off” James responds sweetly, “Okay, Mom.”
Then I say, “Okay, buddy, time to __________.” James responds, “Almost time?” to which I always say, “No, it’s time now,” to which James replies, “What??!!” And the battle resumes.
Because James is already awake these battles are often less dramatic than the morning routine, though not always. And if you try to get him to do something or stop something with no warnings? I’m sure I am not the only parent of a child on the spectrum that is cringing right now.
Many of you who know or have met James realize that he is not like this most of the time. Some of you probably even think I am exaggerating the above scenarios. Yet many parents who have a special needs child, especially one with a Autism spectrum disorder, know that the Jeckyll/Hyde scenario I am talking about is perfectly possible, even with the sweetest, most well-intentioned child. Each episode beginning to end usually lasts 5-15 minutes, certainly not a long time, but as we all know time can be relative. After James has thrown this small tantrum or incredible fit and has been punished by losing a privilege or a timeout, he is usually over it. He is no longer “in trouble” and returns to his cheerful self. But the aftershocks – loss of activities for James later in the day, younger children having witnessed or been woken by this behavior, stressed out husband who doesn’t “turn on and off” the way James does. Aftershocks can sometimes do as much damage as the quake itself, even if they just seem like small rumbles at first.
I will be the first to say that in many ways James is a very easy child, and 95% of the time he is pleasant, well-behaved, sweet and happy. But this “scheduling breakdown” was in need of a more permanent repair, so I decided to document my latest attempt, inspired by my husband’s need for peaceful mornings and Nancy Trush.
James sleeps with a lamp on in his room and reads himself to sleep after being tucked in – my husband is a firm believer in sleeping with the lights off, and felt that James was waking up tired because the light was too bright all night. James is not a fan of the dark, so as a compromise I bought a really neat gadget on Amazon, an attachable dimmer that works on any light or lamp in the house. The first night I dimmed his lamp prior to turning it on so that James wouldn’t be able to protest – after all, the lamp itself looks the same. He definitely stared at it suspiciously for a few minutes when I turned on the much softer light and asked that it be moved closer to him, but didn’t seem to know what else to say. 5 days later the dimmer is going strong and James is falling asleep earlier. This past week only 2 days were unpleasant in the morning. Coincidence? Maybe – so I decided to take no chances and pursue the next step of the plan.
As a preschool teacher Nancy has offered me a lot of insight into what works for her 3 and 4 year olds, which is around where James is mentally. For this particular issue she suggested a timer or alarm clock. Genius, I thought! Blame it on the clock, not on the person. But my very next thought was, James will never go for anything that makes sudden noises – especially alarm noises. So, James and I spent some time online looking at cool alarm clocks as a special present – http://www.trendhunter.com/slideshow/fun-alarm-clocks. My husband and I spent some time meanly laughing at the ones that would wake James up the best and probably cause him to remain awake for the next decade (look up the Sonic Boom Alarm clock on youtube), but in the end James picked the one we are going to try. It is a Hot Wheels alarm clock that makes the sound of cars peeling away from the starting line as the alarm noise, and as an extra perk it looks like the back of a hot wheels car too. We were able to watch it together on youtube to make sure James wasn’t going to freak out once it arrived, and now we are ready to implement the rest of the plan.
As with many of my posts, there is not a neat conclusion or a “hey we fixed it!” moment. Yet. These stories usually unfold over the course of a week or a month, or even have come to a head after several years of working on an issue. When the alarm clock gets here it might further help with the scheduling meltdowns we have been working on.
The Foorce 
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