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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!
DMF Concert today at 1 and 4pm!! Hope you can join us!!
Hope all is well!
You are cordially invited to join us on Sunday, May 22nd at The Dalton School, 108 East 89th St. (between Lexington and Park Ave.) for one or both of our Music Celebration concerts – 1:00PM-2:30PM and/or 4:00PM-5:30PM. Our theme for this semester is “Give Our Regards to Broadway – A Musical Celebration.” Each show will have eleven different performances and will also include a video clip of our Member Leadership Program. We will be performing songs from Guys and Dolls, The Lion King, Mary Poppins, The Sound of Music and Cats, among others, and our members will be introducing props into their songs as well, for the very first time. Should be a wonderful day!
We look forward to having you join us. Please RSVP if you will be able to attend by using Eventbrite – dmfspring2011.eventbrite.com or if you prefer, contact us at daniels@danielsmusic.org or at 212.289.8912.
Help us spread the word and fill both shows (seat capacity 400 at each show), by inviting your family/friends to join us (just let us know so that we can keep track of the number of attendees)! As always, many thanks for being part of the DMF community!
Warm regards,
Daniel, Ken, Nancy and Mike
June 4 – Central Park Challenge – join The Foorce!
This is one of my favorite things coming up. 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 so many people gather for the same cause was truly touching and motivating.
This year we are hoping to have an even bigger team – it looks like at least 15 of us so far. The event is open to ALL ages – my 6 month old, 2 yr old and 10 yr old will all be joining us in the walk. 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! Or, if you can’t be there but would like to support or efforts, there is a Support The Foorce button too. Any donation, even $1, makes a difference toward our goal!
May 22nd, 2011 – DMF Concert – includes video clips from past performances
I hope you will able to join us on May 22nd for the Spring DMF concert! This is the first year that they are opening some seats to the general public, and I assure you that it is an event you do not want to miss. Though I have been to half a dozen of their concerts now, I always leave feeling uplifted, inspired, and amazed at what music can do to enrich lives. Truly, being in the audience is almost as fun as being up on the stage.
But, just in case you need more than my word on how awesome the concerts are, I have included some video clips in this post from past performances. My first attempt at real technology 🙂
Performances are at The Dalton School on the UES, at 1pm and 4pm. James is ushering for the first time, and performing at the 4pm concert. Of course we will all be there loud and proud. Please email me or leave a comment if you would like to RSVP to this unique musical event.
Website: http://www.danielsmusic.org
Seeking Respite, Part 1: The Labyrinth
I have often been asked by family, friends and well-meaning strangers why I don’t get some help with James a few hours a week to make things easier. God, this is such a loaded question for me. Initially, I felt like finding help would look like I couldn’t “handle” James myself. Not that I see that as a real parenting failure; I mean, raising a special needs child is truly the labyrinth of my life. It was actually the flipside: I felt like needing respite from James would make it look like he was hard to handle, or that he had behavior problems that needed outside help. Generally speaking, James has always been a well-behaved child, yet not an easy child. I also relish the little privacy we enjoy here at home – it relaxes me to be able to hang out in my PJs once I’m in for the afternoon or to let my toddler roam the house in her underwear (or less). It stresses me out to have an audience to temper tantrums, accidents, James peeing with the door open, etc. even though these things don’t bother me too much when I’m alone. It’s the same reason that I complain about my house being a mess but don’t want to hire anyone to help me clean it.
Over time I have changed my tune about respite services. Now I am in the part of Labyrinth where Jennifer Connelly finally accepts Hoggle’s help to save her baby brother from David Bowie, even though Hoggle seems a little weird. (If you haven’t seen this movie, it’s a classic) Though respite might be an “invasion” of sorts, a foreign experience if nothing else, it might turn out to be the thing that helps me figure out the labyrinth. I have been looking at respite as a break for me, as a decision about me. But, James deserves to have some time away from his younger siblings (and me), and since it is near impossible to achieve that the way I could with a typical child (playdates, sleepovers, dropoff sports and classes), maybe respite will be the thing that gives him some time to himself.
The decision to seek respite (http://en.wikipedia.org/wiki/Respite_care) has probably been half the journey for me, and has been a very personal decision that I am not 100% certain about yet. But at this point I figure that I should get through the paperwork and see how it goes – worst case we change our mind if it doesn’t work out. In the meantime, I plan to explain my decisions and document the process to get respite for James and myself, one excruciatingly slow step at a time. Hopefully it will kill three birds with the same stone: 1) to help others seeking respite for their special needs family member, 2) to explain to friends, family and well-meaning strangers how the process works and why the decision can be complicated, and 3) to give me a document to refer to when I am banging my head against the wall in frustration, boredom, or while sitting on hold for 8 hours.
Now that I have started my search for respite the questions I am asked have changed slightly to when I am going to get respite, or why haven’t I hired someone yet, or what in the hell is taking so long to get the help? It’s not that easy – let me tell you what has happened to date. One year ago, I contacted someone at the YAI intake department (www.yai.org) to inquire about respite as well as a bunch of other services I was interested in for James, and spoke with a very nice woman named Laura. She told me James would need a psych and psycho-social evaluation before he would be eligible for services. I am sure many of you know that evaluations, while helpful and necessary, are often not covered by insurance and can cost thousands of dollars. If you have Medicaid or are financially comfortable, this is probably not an issue for you. However, regardless of income, if your child qualifies based on their disability, you may be eligible for some kind of instant grant that allows the YAI to do these evaluations for your child at no cost. You can ask about this when you call their intake department. For information on programs, services, evaluations or referrals, you can call 1-866-2-YAI-LINK or e-mail link@yai.org. If someone does not answer when you call, just leave a message and you should get a call back within a day or two.
Okay, so fast forward 3-4 more phone calls with Laura, who was helpful in explaining the process and what we needed to do very patiently. We scheduled James to have a psych and psycho-social evaluation since his were outdated. There is a wait to get appointments for these things, in our case about 4 months. Presto, 5 months passed and we had our evaluations completed this past Fall – 1 trip for intake and 2 other trips for the actual evaluations, and no surprise – James qualified based on his disabilities for all support services. I read the evaluation reports, had them corrected where there were errors, and then my husband made a bunch of copies for me.
You need the hard copies of these evaluations because from here on out, everything I do and everyone I call is going to want to see them in order for James to get any services. Though we have had a very good experience with YAI, they currently have no openings for respite. However, Laura gave me a great reference that lists other agencies who do, and I have narrowed it down to her recommendations and a few others that I thought would be a good fit for us. Today I called AHRC intake at 212-780-4491, because I heard that the waiting period for them was a little shorter than average. I got a voicemail and was told to leave a message. So after the beep I rambled for a few minutes about our past evaluations, about there being no respite openings at YAI, and about how we wanted to get on their waiting list for Respite and were also interested the Waiver (to help with excessive medical bills) and to please call me back and tell me what we needed to do thanks bye.
So now you’re all caught up. As I continue my search and hear back from places, I will write more posts so that those of you in our shoes (and those of you who are just plain curious) will know how this whole process works here. If you have a question or recommendation as far as the process or agencies go, or an experience to share, please leave it in the comment section!
I wonder who David Bowie will be in my Labyrinth analogy…
Recovering from spring break: a look at what’s to come
My 6 month old started crawling early, waving hello and going to bed late. My 2 yr old started wearing an eye patch for six hours a day. Strabismus. In both eyes. We’re up to about 3 hours a day so far. My 10 year old visited with not one, not two, but four different grandmas over the recent break (there is a whole separate post upcoming on grandmas). We had 5 doctors’ appointments in the last two weeks. We took a long day trip to Philly to visit family – my seat is the one in between the two car seats. My sister came to help out for part of the break but instead caught the stomach bug that has been passed around our family for the last 2 weeks. My husband was able to join us for dinner twice during the entire break – our day trip to Philly and on Easter Sunday. My parents came for Easter and took James home with them for 2 days. James returned and seemed surprised that he isn’t in fact an only child.
Whew, so that was my spring “break.” How was yours? My husband told me that school breaks are not supposed to be fun for me, which I understand objectively. But something inside of me still screams for relaxation and rejuvenation when school is out and mornings start later, while also providing fun springtime and Easter activities for the kids. In reality, what the break provided me with was an abundance of topics to post about but virtually no time to actually write anything.
Overall, I am pretty sure the kids had an enjoyable vacation, aside from all of the doctors’ visits. They got to visit family and spend a lot of time outside, and made out like bandits for Easter. They each received 4 Easter baskets between all of the family. I think my 6 month old even got an Easter basket. They also went on 2 egg hunts. As a result of this ridiculous amount of festivity they each inhaled more candy over the course of the week than they are usually allowed in a year. My 2 year old would actually stop in between finding eggs to shove all of the jelly beans or M&Ms in her mouth before racing to the next one. Of course, by the end of both egg hunts she still had managed to fill baskets full of eggs while James found a medium batch of about 10 eggs. Thankfully, he didn’t notice the discrepancy – just one of the things I love about him. I wish I could say the same for my 6 month old. Beginning to crawl when there are small candies hiding in every corner of the apartment is not the ideal, let me assure you. But, it seems to have been motivating for the baby!
As you can see from my opening paragraph, I have a lot of material to draw on in the coming weeks. I also have posts in progress regarding Respite Services, behavior challenges in “tweens” with disabilities, how to reserve tickets for the DMF concert on May 22nd, and a “Call for Speakers” for our 2011-2012 meeting season. We have a couple of fantastic meetings being arranged for the Fall including a parents’ round table and a special needs school review.
So check back often for lots of news and updates! A new post might appear when you least expect it, like 3 am on a Friday night. But right now I am being summoned, loudly, to “fix the Duplos” with my daughter because her brother is eating the firefighter she just put to bed. Ah, the trials of being a big sister.
Do you have a Top 10?
While writing about my state of mind while cleaning up messes, getting to doctors, and dealing with unusual behavior provides me with an endless source of material, I like to switch it up once in a while. So today I thought I would give you one of my Top Tens. I have a Top Ten for a lot of things, vacation destinations, foods, music groups, and each of my children. On days like the day I spent cleaning up one mess after another, I try to remember as many things on my Top Ten list about each child as possible. It helps me keep things in perspective and quite frankly, to pass the time pleasantly during an otherwise unpleasant task.
My Top Ten for James:
1. He smiles all the time. It is so easy to make James smile or laugh. If you meet him, try it. And, I don’t need to tell you that while his disability is not, smiling and laughing can be contagious.
2. He doesn’t ask for or expect much. We can actually take him to a toy store and leave with nothing. If he asks and we say no, he takes that at face value. He gets excited when there are Ramen noodles in his stocking.
3. His family makes up his best friends, and he’s okay with that. I want James to have friends, and I worry about him having friends. But for those of you who know exactly how much fun a playdate can be, especially with a group of special needs kids, I am grateful that he enjoys hanging out with his family so much!
4. He is really affectionate. Though we have gotten James to tone it down a bit, I love that he hugs and kisses everyone so much. When I was 10 I was ducking kisses like it was my job.
5. He says “I love you” all the time, to everyone. While the police officer or mailman might think it’s a little strange, I am convinced that James makes someone’s day once in a while when he spontaneously tells them he loves them.
6. He loves his brother and sister to death. James is so proud of being a big brother, and when I watch him fake sneezing all the way home so that his baby brother stops crying, I am reminded of how good a big brother he actually is.
7. He is very polite to strangers. I get compliments all the time on this one. For all of James’s issues, he’s got this one figured out.
8. He is nice. We have had lots of experience with “typical,” smart, mean kids over the years. James is nice to everyone. He will play or hang out with anyone. How many people can say that? I can’t!
9. He is a good traveler. Seriously, we can go for hours and hours with a gameboy, some books and a bottle of water. And some good views out the window.
10. He is easy to entertain. He can play video games alone, blocks or marbles with his sister, read a book in his room, and even follow along to a toddler activity and not seem bored.
11. He tries so hard. Okay, baker’s dozen but who cares? I couldn’t leave this one out. James tries so hard in all aspects of his life and he doesn’t complain about it or think it is unfair. Everything is so much harder for him – school, getting dressed, playing sports, makings friends. Things I just take for granted he works so hard every day to accomplish.
Do you have a Top Ten? If you don’t, try it out. It is easier to come up with than you may think, and it feels good when you can do it for many aspects of your life. I usually have 5 or 6 more things to add to the Top Ten for each of my family members when I am done, which makes me feel even better. If you do have one and want to share any of your list below or on The Sharing Page I’d love to hear from you!
Have a great day (Happy Passover to those of you who are celebrating today)!
The Foorce 
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