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Since we’re still here…

I’ll tell you about what we actually did this past weekend.

Friday I took all 3 kids to a party after James got out of school. It was at the kids’ club where my daughter takes ballet and gymnastics, some Friday Family fun night they have every other week. It was supposed to be for ages 6 months to 6 years but I explained my situation with James to the manager and very sweetly she said he could come too.

I was a little nervous bringing him, though I couldn’t put my finger on why. I am comfortable discussing James’s disability and am an open book re: his diagnosis and special needs. He is also very well behaved for the most part and loves to play with younger children – it should all work out, right?

I think it was the other kids. Adults have a filter when discussing your very tall, obviously way too old to be here, talkative, anxious, disabled child. Most of them know what to say, what is okay to ask about, and most importantly, what not to say (“Um, is there a reason your son is hiding behind the pillar crying while Roly Poly Guacamole plays the guitar and sings Baa Baa Black Sheep?” or “Hey, I think your son is crying again because that toddler threw a ball near him.”) Kids generally haven’t developed a filter yet, which can be refreshing until you’re at the NY Kids Club trying to “protect” your 10 yr old from some pipsqueak who is calling him mean because “he is playing with all of the red balls out of the ball pit and he won’t let me throw them back in the ball pit” and not using an indoor voice and his nanny is on her cell phone looking at you like “Hey, take care of it- your much older kid is the problem” and all you want is for the pipsqueak to stop talking so loudly and for James to stop whimpering about “he took my ball” so that you can make sure your toddler isn’t going to flip right off of the trampoline she is jumping on with reckless abandon across the room.

Then, Roly Poly Guacamole played. Two guys with a bass and a guitar singing lots of kids’ songs – my daughter adored them and sang and danced right up front the entire time. The lead singer reminded me of Jack Black from School of Rock, a movie James likes a lot, so I thought he would probably be okay for the “concert,” a.k.a. 30 minute rendition of childrens’ songs with 1 tiny little amp, 2 guys with guitars and about 20 kids and their caretakers. Not exactly Madison Square Garden.

Nope. One song in, I think it was “Itsy Bitsy Spider,” and I look over to see James silently but dramatically crying about 3 feet away from the bass guitarist and about 6 inches away from pipsqueak #2 who is pointing James out to his mom and drawing the attention of the performers as well. I whispered to James that he could sit in the back with a book (“No, that’s not allowed!”) or wait in the waiting room 10 feet away (“But Mom, it’s too far!”) if the music was upsetting him. James opted for taking the fetal position behind a pillar about 2 feet away and occasionally peeking out to make sure I knew he was still crying about each song, especially the ones where they had to jump up and yell “Yeehaw!” as loud as they could. My 2 year old remained blissfully oblivious to James’s distress and my 7 month old nursed and slept through the whole thing.

The second the music ended, James hopped up with a smile and said “That music was good. I had fun. I’m ready for pizza!” and walked to the pizza room with the other kids. In the pizza room, which serves as a dance studio during business hours, there were 3 tables set up with slices of pizza and tiny little chairs. Great, I thought, where is James going to sit without feeling awkward or nervous? Next to my daughter, of course. My gentle giant sat with all of the teeny tiny 1 and 2 year olds on a teeny tiny chair at a teeny tiny table and ate his slice of pizza, completely oblivious to the fact that he was the biggest by a solid 75 pounds and 7 years.

Saturday my husband was home, which is a rare occurrence lately, so we started the day off plus one for the good guys. We ended up at the “beach” at South Street. Here my toddler ran wild in the sand, trying to steal other children’s toys or share handfuls of sand with adults drinking very expensive drinks from clear plastic cups on those white “couches” on the “beach.” Here was James’s chance to shine! He lay in the sand with some modified sand toys – a plastic teething ring, a small rubber hippo, and a brio train with a tiny wooden bucket – and played contentedly for the entire time, only pausing from his bliss to tell us when his sister threw sand in his hair, twice. Wait, thrice. Later, we toured the Peking (the ship next to the mall) and then took James and Margaret to the Ice Cream Truck. I guess we haven’t gone very much this season, because James must have thanked Ryan and I about 30 times before his cone was gone.

Funny thing on Saturday: around 5:50pm we were headed home, coincidentally around The 6pm End of The World, when it suddenly got dark and windy. Did anyone else on the UWS notice that? I bet you were thinking hard about your lists right around then and wishing you had knocked off a few items. We didn’t do my list, but we did get some sand time and good food in there for good measure!

Sunday was baseball at Riverside and of course, the DMF concert I have been writing about for the last 2 months! The concert deserves its own post, and will get one with audio/video highlights as soon as I download “Hershey Love” on itunes and figure out how to share it with all of you. But, long story short for now, it was Awesome (no thanks to some very whiny babies). It was also awesome to see some friendly faces at the 4pm show! I also heard very good things about the 1pm show, especially “Luck Be a Lady” and the Wizard of Oz cast!

I hope you enjoyed some nice weather over the weekend! My blog got a much higher than usual number of hits this weekend, and I couldn’t figure out why until I saw the search terms – about 40 varieties of “end of the world” put into Google.

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.

http://mommypoppins.com/newyorkcitykids/special-needs-programs-and-classes-for-all-new-york-city-kids

The Tale of the Mother, the Son and the Online Auction

Once upon a time there was a very thrifty mother. She was really very thrifty, always on the search for the next deal or discount. She had been this way for as long as she could remember and was proud of the many ways she saved money for her family.

But even thrifty mothers have secrets, and this mother kept a big one from her children. Late at night or early in the morning while her children slept, the woman bought her children toys. But not just any toys. Toys on Ebay. Used toys at a very steep discount. Her children didn’t suspect her in the least – they were just happy to know that priority mailboxes were often filled with special surprises just for them.

One day two boxes arrived in the mail. The mother explained to her children, “If you are very good today you can each open one of the boxes after dinner tonight.” She knew that one of the boxes was full of Barbie dolls for her daughter – she had won an Ebay auction the day before for $8. The other box was for her son, James. It contained 32 Garfield comic books, his very favorite cartoon character for many years. James had spent the last 2 years reading the same 3 Garfield comic books every night before bed, so the mother was particularly excited about this gift. On top of it all, she had won the entire collection on Ebay for $8.50, a real steal.

James waited patiently all day long for his big chance. Toward the end of dinner, James asked his mother, “Can I please open my box now?” “Of course,” said the mother. “It is the best surprise ever. You are going to love what is in that box!”

James rushed over to the door. The mother could hear him tearing open the box. Then there was silence. “Can you believe it?” asked the mother. “What an amazing surprise came in the mail!” There was a long pause, and then James replied, “Wow, mom. Thank you! This is a really nice present!” “Well, come on,” said the mother. “Bring them out to the living room and I will let you pick one or two to take to bed this evening.”

Slowly James walked into the room holding the box. Of Barbies. The mother quickly realized what had happened and exclaimed, “No, James! Open up the other box!” James obeyed, leaving the box of Barbies on the floor where his little sister rushed over and began to play enthusiastically. Shortly James returned, beaming, with a much different box in his arms. He spent the remainder of the evening looking through his new treasures and selected 2 special books to read in bed that night.

The mother laughed to herself that night, while also thinking, How very lucky I am to have such a sweet, appreciative son. He has such compassion toward others that he didn’t want to disappoint me by not liking his “gift” of Barbies. James may be handicapped in many ways, but there is nothing disabled about his heart. 

She went to bed that evening feeling grateful for her children, and for Ebay.

Progress measured – thanks Yankee Stadium :)

Many of my posts about James discuss his shortcomings, unusual behaviors, and struggles as a disabled child. More and more over the past couple of years, Ryan and I have struggled with the fact that James’s “progress” seems to have slowed considerably compared to when he was younger. Despite the fact that we work increasingly harder to help James, his IQ scores are lower every year and his social skills (with peers) and daily living skills leave a lot to be desired. On a bad day the battle can seem endlessly uphill.

Enter Yankee Stadium. We are not serious baseball fans (football is more our thing) but going to games is an appealing activity regardless. Ryan got some great tickets through work, and after the original game was conveniently rained out we found ourselves able to enjoy a Yankees game on a beautiful Saturday afternoon , several rows back from the field in amazing seats.

It was our first time to see the Yankees play live and our first time at the new stadium, and in my excitement about going I completely forgot to dwell on what James’s reaction would be once we got there. To say James has a lot of sensory issues is putting it mildly – last year we went to a Knicks game at Madison Square Garden and he cried for the first 30 minutes every time a horn blared, the crowd cheered too loud, the buzzer buzzed, etc. He was able to pull it together enough to watch, and even cheer a little, but was also happy to leave at halftime.

So as we walked further down the stairs and ever closer to the field, I started to worry a little. James looked awestruck by the setting itself, so he hadn’t said too much yet. But I started thinking to myself, people paid some serious money for these seats – what are they going to think if my 10 year old starts crying loudly every time there’s an exciting play? Not to mention the toddler and infant we also had in tow. Talk about potential disaster!

Long story short – it was okay! My two year old was a little stir crazy, but luckily our row wasn’t crowded and she was able to take several trips up to the concessions and bathrooms to pacify her need for stairs. James and the baby were both scared to tears exactly once – during the 3rd inning the crowd let out a collective yell during a particularly exciting play and James and Adam both burst into loud tears. I smushed James’s face into my t-shirt and whispered, “It’s okay to scream for your team when you’re excited. You need to stop crying or we will need to get up and take a break from the game.” Much to my surprise, James stopped crying almost instantly, and somewhat nervously continued watching the game. Within about 5 minutes he was once again following the instructions and cheers on the big screen with enthusiasm.

The next time James cried was at the end of the game. I couldn’t tell if it was because he was sad it was over or because he was relieved of the tension from hours of noise and chaos, and I couldn’t find out because I chose to ignore the fact that he looked upset and ask him what his favorite part of the game was. After a minute of ignoring his fake yawns (he pretends to yawn when he is trying not to cry in front of people, a very creative and heartbreaking thing to witness) he was able to join in singing New York, New York, which was blaring over the speakers on a loop as people left. Thankfully, the Yankees won so James was able to focus on this positive piece of news, and he repeated “Yes, the Yankees won” no less than 50 times as we proceeded back to the subway.

Considering our company, we had a fairly relaxing and enjoyable time at this game. The seats, the weather, the kids’ behavior – all of it was just right. This is nothing short of miraculous. When we got home I was able to reflect on the day and really evaluate the progress that was apparent in James.

The fact that we got to the stadium before I started to worry about his sensory issues showed progress. James crying only once over the noise showed (tremendous) progress. James recovering from being frightened so quickly showed progress. James participating in the game and seeming to enjoy himself showed progress. James using the men’s bathroom while having to wait in line while I changed the baby in the women’s bathroom showed progress. Me needing to focus more on the behavior of the younger two children and being able to ignore James for stretches at a time showed progress. That’s a lot of progress in one day (and paragraph)!

Sometimes it’s hard to see the progress that’s right in front of your face because it can’t be measured by an IQ test or a therapist evaluation. Sometimes the progress hides behind new “louder” issues that have come up. It makes me so happy to know that progress was being made all along, just waiting to be noticed. It makes me a little sad to have not noticed it sooner.

Of course, before I was able to finish this post I got to witness the dismal lack of progress on other fronts, like James’s fear of popping things or things that could potentially pop. But that’s for another time, I think. For now I’d just like to bask in the glow of James’s progress, which easily outshines the brightest big screen in the whole wide world.

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.