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Weekend update and a look at what’s coming
The weekend was so packed that I am too exhausted for a clever title, let alone a post that will do justice to any of the weekend events. But here is a quick sneak peak at the posts that are in the works for the week once I take a night to catch up on my much-needed sleep (it does happen once in a while):
What The Other Kids Are Saying and Thinking About Your Special Needs Child – Inside Scoop – a recap of my meeting at James’s school, where I had the chance to speak with his 4th grade class and answer their questions for an hour.
Central Park Challenge Recap – will tell you all about our awesome team and the great time we had, plus the total amount of $ we raised and some fun pictures from the big day!
Counting My Blessings at St. Patrick’s – the confirmation service for special needs people today was a wonderful event, made even more so by observing the other families around me.
First Meetings for The Foorce Summer Social Group – the more fun summer version of our school year meetings are finally being scheduled!
My Daughter is a Foorce to Be Reckoned With – a post regarding my toddler’s changing role in James’s day-to-day life.
There will also be announcements regarding special needs swim lessons (free!), Manhattan reimbursement funds and meetings regarding the new IEP format in each borough. Plus, James is going back to school tomorrow, blissfully unaware that anything unusual happened last week (see Dirty Laundry) – I am super nervous for him but cautiously optimistic. The current plan is to publish at least one post each day this week. That is, of course, if nothing else exciting happens (fingers crossed!).
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.
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.
Creating a Meaningful Life after High School: Keynote Event June 6, 2011
Just passing along an email I received earlier today. This looks like a really excellent event for parents and special needs young adults. James is not quite here yet but I think about this topic all the time and would love to attend this panel discussion, and hope someone can benefit from this information:
Steven Morales graduated from the AHRC New York City Melissa Riggio Higher Education program at Kingsborough Community College in May 2010. He now works as a film production assistant, and contributes to the important mission of a vibrant non-profit organization in Manhattan.
Every parent wants their children to realize their dreams.
On Monday June 6, all parents and professionals have a chance to hear from leaders in the field of individualized supports about how to help their children design a meaningful life at this free event. Parents will learn how to explore and build on their young person’s passions and abilities, and design person-centered supports to help young adults live a life they choose, not one defined by their disability.
This is a chance for all parents to get a glimpse of the amazing possibilities that can be achieved through person-centered planning–and to understand the public funding streams available to support this work.
Steven Morales will be there to tell his story as well–together with Lisa Severino, a young staff member with the Self-Advocacy Association of New York State who has been living in supported housing with HeartShare for the past seven years, and Todd Irby-Rannair, a 2005 graduate of the Manhattan Occupational Training Center now working at a midtown law firm.
Please forward to any parents or professionals you know who might need this vital information. (Printable PDF here.) The event is free, but seating is limited. Online registration strongly recommended! Registered attendees will receive a free publication at the event.
Transitions program at the JCC – Ages 16-21
Another good reference for special needs programs around NYC
I love Mommy Poppins and generally use it as a reference for my younger two children and for family activities around the city, but the site also has the occasional special needs resource. The link below has information about academic classes, sports programs and some unique therapies like hippotherapy (horseback riding) around the city.
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!
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…
The Foorce 
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