Posts Tagged ‘special needs support groups’

Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex

June 16, 2011 3 comments

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).


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.


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.”


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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)

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 – – 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.

Special Education Meetup Group in NYC

I have been a member of various groups for all of my kids, but I wanted to share with you the most recent group I joined, the New York Special Education Meetup Group. Below is the group description taken from their site:

Our Community is made up of Parents, Educators, Caregivers and Students who want to share best practices, network, talk, share stories, and lend support to each other through the sharing of information. The group meets regularly. Anyone is welcome to attend these informative meetings which provide opportunities to: 

• hear from speakers 
• learn about resources in the community 
• network with other parents 
• keep updated on issues affecting children with special needs

Meet with other local Special Education parents, care givers, case workers and educators. Gather to discuss issues facing special education students and programs. Education Through Adventure is dedicated to experiential education and the students, educators and practitioners who utilize its philosophy. We are based in Orange County New York.

You can join the group for free to see photos of their activities, participate in related discussions and be updated about meetings around the city by going to and clicking Join Us.

Their next meeting is on June 1 at 7:15pm and is about equipping your home or classroom for the sensory child. I look forward to finding out more about this group and sharing my experience with you!

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.

Call for Speakers for the 2011-12 meeting season

Many of you who read my blog have met me at one of the PS 163 cafe meetings over the past 2 years. We have had some really amazing speakers this past school year, and in an effort to outdo myself I am putting out a notice for some of the meeting topics that could benefit from a couple more people.

Right now I am looking for:

1) Parents of special needs children who a) are entering a special needs NYC approved private elementary, middle or high school, or b) have a special needs child who has transitioned from a public school to a private school setting, or c) have a special needs child who resides in a CTT or contained pubic school classroom setting in grades 1-12 who would be willing to sit in a round table discussion about their experience with the school, the search for the right school, the admission process, and answer questions from other parents.

2) Agencies or individuals who provide an extracurricular service to the special needs population, such as sports, music, art, a social skills group, a mentoring program, tutoring, etc.

3) Financial planners or consultants with experience in planning for the future financial needs of families with special needs members.

4) Special needs people with a unique talent in music, art, cooking, athletics, or anything you’d like to mention!

If interested, please email me at with your information so I can fill in a few spots for next year’s meetings. I will post more details regarding each meeting as dates and information becomes available. Also keep an eye out for the post about our Summer group’s first meeting!

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 ( 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 ( 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 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…

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