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Posts Tagged ‘special needs parenting’

Monday Minute: James Got Punched In The Chest By A Raptor

If only to further demonstrate why special needs sports teams (and dad as coach) are so important to James:

James is in italics, my responses are in bold.

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Mom I have to tell you something.

What is it? Can you wait for one second? (I’m brushing James’s teeth at the moment, but James remains undeterred.)

Something happened yesterday.

What?

I got punched in the chest, like this. (punches himself in the chest with one fist, like half of a gorilla)

Punched in the chest? Where?

At baseball.

What? What happened? 

A Raptor punched me in the chest, like this. (punches himself again for full effect)

A Raptor?

Yeah, not a Grizzly. He was on the other team.

Why would they do that?

I don’t know.

Did you get upset?

(frowns) Yeah, a little.

Did you tell an adult or another coach?

No.

You should always tell if someone hurts you, James. Dad is the coach – you can always tell him, at least.

(approaching Ryan a few minutes later, who is brushing his own teeth)

Hey, did you know James was punched in the chest yesterday by some kid on the Raptors?

Ryan: (pauses, sighs) He was tagged out.

Oh.

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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!

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).

3:00pm

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.

3:30pm

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.”

4:30pm

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.

5:00pm

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.

5:20pm

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.

5:35pm

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.

5:55pm

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.

6:15pm

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.

6:30pm

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.

6:31pm

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.

6:45pm

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.

7:15pm 

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.

7:45pm

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.

8:00pm

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.

8:30pm

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.

8:35pm

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.

9:00pm

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.

9:45pm

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.

 

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!

Special Needs Sitter, Tutor, Buddy: This Penny is Worth a Million!

I’m not sure she would appreciate my little pun, but I am very excited to have found Penny! We hired her to work with James this summer, and she is exactly the young, energetic person I was hoping to find. Penny has volunteered for several of James’s special needs athletic teams, so James is already familiar with her, and so are we for that matter. She is going to work with James a couple of times per week this summer on some academic areas, but also play games and do outdoor activities with him as well. She’s also going to help us with the whole bike-riding dream I have.

I have included a short introduction written by Penny, in case you are looking for a similar situation this summer and would like to hire her (as long as it isn’t full time!). You can her at pensav93@gmail.com if you are interested or want more information.

From Penny:

I am 17 years old, going into my Senior year of high school at Columbia Preparatory School on the UWS.   I have been working with kids for about six years now.  I have been babysitting for the same family since I was 11 years old, they now have two boys, six and two.  Also, I have participated in the West Side Soccer League’s division for children with special needs, Basketball Buddies with Ken McGrory’s division for children with special needs, and I worked at the JCC summer camp the summer of 2010 for the University division for kids with special needs.  I am comfortable tutoring in just about every subject except Science.  I have taken Spanish for four years now and would be comfortable tutoring in that.  I love playing and teaching sports and any other types of games or activities.

Snatch her up now – there are only so many days in a week and we have claimed two of them!

Shame on you, Martin Luther King Jr. Health Care Center and BronxCare Dental

If you saw me outside today with a sour look on my face, kicking the curb when the stroller wouldn’t go up, muttering to myself about people taking up too much space on the sidewalk, or randomly shaking my head in disgust don’t blame the extreme temperatures. Blame the Martin Luther King Jr. Health Center, especially the one on Ogden Street in the Bronx.

It has taken me an hour to calm down long enough to write this post without the use of expletives, but it took almost as long to dial not 1, not 2, but 5 different phone numbers for a grand total of 16 calls and nearly 4 hours of being on hold or being told to call someone else.

Call 1: 718-466-3222, MLK Health Center on Ogden in the Bronx

A man picked up as the phone rang, a good sign, I thought. I explained that we had an appointment for dental sedation for my special needs son that we needed to reschedule because we would be out of town on the original day. He told me he was finishing up registering a patient and could I hold for a minute. “Of course,” I said. I put my cell on speaker phone and went about my business. Twenty-two minutes later I hung up, frustrated, and redialed.

Call 2: 718-466-3222, Same place, new person

A woman picked up the phone – she sounded like I had woken her up. No matter, I thought, at least it isn’t a recording. I explained that I had been left on hold for a long time and that I was trying to reschedule an appointment for my special needs son. I further explained that I had two small children in addition, and that staying on hold for long periods of time was very difficult, so if she could just give me any new date to come in we would take it. She asked me for the patient’s name. I spelled it for her. “Thank you,” I said. “We are new patients and he needs to be evaluated for sedation because he is so fearful of the dentist.” No response. “I appreciate you doing this.” It sounded like she was singing softly in my ear, wait, I was on hold again!!! It was a sneak attack. I looked at the phone – eight more minutes, gone. I gave it 5 more and hung up, irate.

Call 3: 718-466-3222, Same place, both people

I called back. The woman answered on the second ring. “I think I was put on hold or hung up on,” I started. “I really need to speak with someone about my son’s appointment. His name is -” She put me on hold. HOLD!!!! Almost immediately though, the original guy picked up. “I have a lot of patients here,” he said. “I appreciate that,” I said. “I have a lot of children here, and I really cannot afford to spend all day on hold – it has been 45 minutes already.” “Okay,” the man said. “What is your child’s name?” I gave it to him as he typed away at his keyboard, though for all I know he was drumming his fingers on the desk or clicking his teeth together. “Your son doesn’t have an appointment here,” he said. What?! “He was scheduled at 171st and Grand Concourse. I’ll give you their number, you’ll have to call them to reschedule.” “How can this be?” I asked. “I booked this appointment months ago at this number.” “That can’t be,” he said. “We don’t take appointments for July yet.” He gave me the number and I hung up, fuming.

Call 4: 718-838-1024, MLK Health Center 171st and Grand Concourse?

I called, incredibly frustrated but certain that I had finally been directed to a person who could help me. It seemed even more official because I had to press 1 or 2 a few times to get to the right department. A young girl answered and when I explained the reason for my call, she said, “Oh, you want Pediatrics at Make-You-Feel-Crazy Street. I can give you their number.” No, it wasn’t Make-You-Feel-Crazy Street, but honestly, I didn’t even care. I just wanted to speak with someone, anyone, who could reschedule the appointment. “This has been going on for an hour,” I said tearfully. “Can you please just connect me? I have a special needs child and 2 small children going crazy over here and I just need 2 minutes of time.” She sounded apologetic. “No, but I’m sorry for your trouble.” I hung up, armed with a new number and a new level of frustration.

Calls 5-7: 718-901-4604, who knows, who cares?

The number you have reached is no longer in service….

Call 8: 718-838-1024, MLK Health Center at 171st and Grand Concourse

How could you give me the wrong number? Why are you doing this to me? Is this your idea of a cruel joke? Can’t you tell that I’m on the edge already?

All questions I wanted to shout, but instead I said, “The number is disconnected. Do you have another one?” I was put on hold while the girl confirmed that yes, I did dial correctly and yes, the number was dead. She was very apologetic. I hung up with a new number.

Call 9-16 (so far): 718-838-8402, MLK Center for cruel jokes on overwhelmed mothers of special needs children,  no location specified

Dial this one, I dare you. You will not speak to a living soul in dental. You can get a real live operator by furiously pressing 0 over and over again but she will direct your call to dental, where you can press 1 for English, press 1 to schedule or reschedule an appointment, and then one of three things happens: it rings forever, you get an automated voice message that hangs up on completion (unless you know your party’s extension), or my favorite, you get put on hold for eternity, where all of the people I previously talked to are probably sitting around just laughing (or if you’re that first lady, back to your nap).

Damn you, MLK Health Center, damn you. (I hope nobody is counting damn as an expletive) You have ruined my day. It’s not an exaggeration. I spent from 9-11 and from 3-4:15 on the phone trying to do a very, very simple thing. I wasted cell phone minutes. I wasted time that could have been spent with my kids. I wasted any time I was going to have with my kids occupied so I could have a small break from them today. I was probably less patient with my kids and everyone else today because I was frustrated with the “receptionists” at the MLK Health Center.

And I get to start all over again tomorrow – James’s teeth don’t care if I’m frustrated, and neither does our health insurance (your on my list too, Cigna). Don’t say you haven’t been warned about this place!

Update:

It is Friday morning. I have called 718-901-8402 4 times nows since 8:30. The first time I was informed that they did not open until 9:00, so I called back at 9:01. I was put on hold the first two calls, and after 10 minutes disconnected both times. The third time the sympathetic operator gave me a sixth number, 718-901-8136. I am currently on HOLD, and have been for eight minutes. So far, I have wasted another hour and ten minutes of my life. The hold music playing on my speaker phone is a subconscious stress as I try to pleasantly make the kids breakfast, get them dressed and read them books, all while keeping one ear out for a human being to pick up the phone and perform a 90 second task for me.

I think my next task will be to double check with Cigna that this is really my only option. If this is how hard it is to make an appointment, I can’t imagine what the waiting room will be like.

Are You Smarter Than a Fourth Grader: what the other kids are asking about your special needs child

As I made my way to James’s school on Friday afternoon I tried to imagine what magic spell I could recite to his classmates to make them all forget about Wednesday’s incident. Do you ever wonder what other kids think about your special needs child? This is not actually something I dwell on often, but standing in front of 22 very curious faces I wondered what questions were about to come my way, and hoped that I would be able to answer them both honestly and appropriately (I really didn’t want to say “poop” or “megacolon” in front of a bunch of fourth graders).

I started off by explaining why I was there – I told James’s class that he didn’t know I had come but that I was worried about sending James back to school after what happened on Wednesday and wanted to make sure it was safe for him to come back. I told the kids that I was concerned about  what might be said to James and that I didn’t want him to be made fun of for something that was outside of his control. I gave a brief explanation of James’s disability and related medical issues that led to Wednesday’s disaster, and also talked with them about James’s past surgeries and his history with intestinal issues. Then, I opened up the floor for questions – regarding Wednesday or James in general. Here are just a few of the questions I was asked:

Q. What happened Wednesday? Why did James not know what to do?

A. James may not have been able to tell you, but as his mom I know what was going on inside of him. James had an extremely busy week with you guys – NDI performances, field day, field trips, testing – and because of his crazy schedule his medication didn’t work properly and James was not able to go to the bathroom for nearly 2 weeks (there was a collective gasp at this pronouncement, especially from the boys). On Wednesday his body did not cooperate with him and James couldn’t make it to a bathroom in time. He didn’t know what to do because he was outside and far away from a bathroom.

Q. Is James upset at home?

A. Not really. Thankfully, James forgot about what happened by the time we got home – he forgets about things very quickly sometimes. I am hoping you will help him forget about it.

Q. Why does James make weird faces and tip his head sometimes?

A. James’s brain works differently than yours or mine and sometimes he is thinking about something and acting it out in his mind. You know how you can keep your thoughts secret from people if you want to? James can’t do that sometimes.

Q. What kind of surgery did James have?

A. He has had a lot of surgeries – on his eyes, stomach, teeth, legs.

Q. Did it hurt when they did surgery?

A. No because they gave him a shot that made him sleep through all of them, kind of like when you go to the dentist.

Q. Why does James spin in circles a lot?

A. Sometimes when it is really chaotic or loud James likes to spin in circles to deal with all of the noise. Other times he likes to spin because it feels good to him.

Q. I had that same kind of surgery and sometimes my eyes get tired and they go like “this.”

A. That’s what happens when James’s eyes get tired, too.

Q.  Why does James get mad when I say good job? Why does James get mad when I try to help him? 

A. James may have not been able to tell you, but as his mom I am pretty sure that he isn’t usually mad, even if he looks like he is. When James gets mad he is usually one of 3 things – scared, frustrated or embarrassed. Sometimes when you say good job James is feeling frustrated or embarrassed that he can’t do whatever you guys are doing – NDI, gym, math – as well as you, and he thinks you are teasing him or just feels upset that he can’t do those things. He is embarrassed to have you help him because he wants to do it himself.

Q. What can we do to make him not feel embarrassed?

A. Act like you don’t notice that he is not doing it the same as you – all he wants is to fit in with the group.

Q. Is it serious?

A. (after some clarification from the teacher) As long as James takes his medicine and sees his doctors he should be just fine.

Q. Why does James make noises like “this?”

A. James sometimes doesn’t realize he is making noises, and other times he can’t help it. Sometimes when he is stressed out or excited he makes noises – the noises help calm him down. It is better if you just ignore them.

Q.Why does James cry at popping noises?

A. This is a very serious thing I want to address (I spoke to the whole class but everyone knew I was really talking to a handful of kids in the class). I understand that there have been some popping incidents during lunch, where people are popping chip bags at James. This must stop. James’s ears are shaped differently on the inside and popping noises scare him because they really hurt his head on the inside. They hurt James like he is being hit (I made some good eye contact here). If James was given a million dollars inside of bubble wrap he would throw it in the garbage (there was a huge gasp from the class at this revelation) because popping is so horrible to him. We can’t have balloons or anything else that might pop in our house because we don’t want to hurt or scare him. When something pops near James it feels like he was hit in the head – that’s how much it hurts. So if you are popping chip bags at James, it is the same as if you hit him. Popping is hitting.

Q. How can we help James? What can we do when he is upset?

A. You can help him by being his friend, and by acting like he is just one of the group. You can pretend not to notice the ways he is different from you, the noises he makes, or the “weird faces.” Instead of asking what’s wrong you can act like you don’t know he’s about to cry and let him recover by himself so that he doesn’t feel embarrassed. You can protect him from other children at lunch and recess if he is having trouble understanding the rules to a game or if they are making fun of him for doing unusual things by inviting him to hang out with you.

Q. One time I fell off the stage and had an accident in front of everyone.

A. I bet you felt scared and embarrassed too. (Nod) So you especially know how James felt last week at recess. (Nod)

Q. Why couldn’t James walk to the bathroom on Wednesday? Was he paralyzed?

A. He wasn’t paralyzed but his insides kind of were. James couldn’t get to the bathroom because his stomach hurt so badly he couldn’t walk. You know how your insides hold everything inside for you so you have time to get to the bathroom without an accident? Sometimes James’s body doesn’t do that for him, and there is nothing he can do about it. Can you imagine how much it would hurt if you couldn’t go to the bathroom for 2 weeks? (Lots of nods)

Q. What can we do to help on Monday when he comes back? (This was asked about 15 different times and ways, and I answered the same way with slight variations each time)

A. The best thing you can do for James is to pretend like nothing ever happened, because James has already forgotten about it. All James needs to be happy is a bunch of good friends. James is not worried about coming back Monday because he doesn’t know what happened is such a big deal anymore. I am worried as his mom that he will be made fun of so I need your promise that you will not mention what happened on Wednesday and that you will tell a teacher if you hear anyone giving James a hard time, especially at lunch or recess. (A classroom full of thumbs up went into the air)

It was 3:00 and almost every child still had their hand in the air though I had been answering questions for an hour. The minute the session was “closed” I was swarmed by children who were eager to touch my 8 month old, who I had brought along for the meeting. Children were touching his cheeks and holding his hands, while others were bringing up classwork and pictures to show me. I could barely get out of the room for them to pack up – I must admit, I felt like the popular kid (it was probably the baby) and I hoped that I could pass off some of my popularity onto James.

Yesterday I sent James to school with one change of clothes and no small amount of anxiety. I felt that my meeting with the children had gone well. The teachers and administration had been nothing short of supportive, amazing, kind, helpful, wonderful, and amazing (seriously, this does not even begin to do justice to how amazing they were). BUT, James had not “gone to the bathroom” since the incident. Even with the new meds. Ugh.

Despite my worrying, there were no calls during the day, and when I came to get him after school he looked relaxed and happy. The teachers said he had a great day and James came up to inform me that “Kasia was his best friend today.” Other children said hi to the babies and all was well. I instantly felt about 10 pounds lighter.

It looks like I underestimated the kids. So, fourth graders everywhere but especially in class 318, please accept my apology for not giving you enough credit to take information and use it for good. I hope one of you gets to read this at some point a few years from now – no matter what else you have done up to that point, I hope that you will be able to find out what a difference you made in someone else’s life. James may not have been able to tell you, but as his mom I am telling you how grateful we both are for your help, support and kindness.