Special Needs Children and Athletics

If you search "children and athletics" on any book site you get dozens upon dozens of books on how to help coach and motivate children in athletics, whether competitive sports or just for fun. Add the words "special needs" in front of that same search and you pretty much get nothing (well there is a book about Oscar Pistorius, but I'm not sure he is the role model parents are looking for these days).

The same thing happens on a general Google search. You add in "special needs" and the search brings you various websites and blogs on how to make sure the school district is following the IDEA and implementing your child's IEP so that your child is not being denied to right to engage in PE class, even if modifications are necessary. You also find links to organizations that provide sports programs (for a fee that often far surpasses the fee for the same program for neuro-typical children) for special needs children, often with very specific special needs, such as Autism. And that's about it.

There is nothing that I have located (and I am a pretty darn good googler) that addresses how to encourage, support and motivate your child with special needs in athletics. I've yet to locate a book (or even article) directed at coaches on how to motivate, encourage and support children with special needs who are participating in a typical sports program.

Am I surprised? No. Am I disappointed? Yes. With the hundreds, if not thousands of articles and books written about the important life lessons children learn from participating in sports and how to motivate and coach children, you would think someone would have addressed the inclusion of special needs children.

Eliza has had two wonderful Physical Education teachers. But these are teachers in the public school system and they have years of experience teaching and coaching children with special needs because the school Physical Education classes are inclusion classes. They understand that Eliza may need to have the rules of the game broken down into individual steps and perhaps repeated a few times. They understand that simply telling her to try harder on her bounce pass in basketball isn't particularly helpful without something more definitive, like reminding her how to hold her hands properly to put the ball in play.  

But when we have ventured into those weekend sports activities, things have been pretty disappointing. Eliza takes gymnastics on weekends. It is a group class but the coach to athlete ratio is pretty good (20 athletes in Eliza's age group (8 to 10 years old) and 4 coaches) broken down into groups by level. Eliza enjoyed it last year in the younger age group (6 to 8 years old). In the younger age group instructions were broken down into smaller steps and I suppose there was an expectation that the younger gymnasts needed more structured coaching. Just my guess.

This year in the older age group Eliza has struggled. Eliza was enthusiastic when she returned after the summer hiatus. She is not as adept as some of the other gymnasts (some of whom have been taking classes since they were toddlers) but she is equal to many others and was eager to learn and try.  She has some fears (flipping over the uneven parallel bars), she is not as physically strong as some of the other girls and is by far the smallest of the girls in her class. Despite that, Eliza does quite well on the beam and mat.  

But Eliza struggles in the warm up session since instructions are given in bulk ("Now girls let's warm up by doing A,B,C and D and repeat that 4 times).  Eliza will remember A and B but then kind of get lost because she did not retain the entire instruction.  Or she'll remember the 4 step instruction but not the instruction to repeat that sequence 4 times). So to the average observer it looks as if she is just not paying attention. The coaches are relatively young and I've talked to them about Eliza needing instructions broken down or repeated, but, like many folks, they just think Eliza doesn't pay attention, is daydreaming or too lazy to try harder. And this makes me sad an frustrated. I'm not looking for Eliza to be catered to, just some small extra steps to help her succeed at something she enjoys in a setting with neuro-typical children.

Athletic endeavors have been a struggle for Eliza, not for lack of skill,but because since she does need more reminders or instructions broken down, and without that she cannot live up to her potential. (Welcome to the world of ADHD and working memory deficits). She sees her teammates master something with minimal instruction and she is standing there waiting to hear what the next step is.  As I've mentioned in my prior post about the lasting effects of bullying (real bullying, not just the routine kids being boneheads) Eliza has some self-esteem issues.  The effect of this combination has lead Eliza to believe that she is not good at it gymnastics, never be good at gymnastics. and therefore does not want to go to class. Clearly she loves her gymnastics since she enjoys practicing at home on our mat and showing off her skills.

The "solutions" are limited. Enroll Eliza in special needs gymnastics class (assuming I could find one), win the lottery and pay for private lessons to supplement the group class in the hope that this builds her confidence, switch from gymnastics to something else like tennis, which she did well at in an after school program (in large part due to having a great coach) or have her not participate in sports. My goal is not for Eliza to join an Olympic Team or an NCAA Division I team. I just want her to experience the camaraderie of being on a team doing something she enjoys, learn the values of team play and sportsmanship and simply have some fun.  

So my question is, when people decide to become coaches and instructors these days, do they learn about or discuss the fact that there may be a child with special needs in their program? Or is the goal in coaching to shunt children like Eliza off to a special needs program?  I know what the politically correct answer will be, but what really goes through the mind of a coach? Are coaches willing to take the time to break down instructions (something that would arguably benefit the neuro-typical children as well)? I'm not trying to be contentious, I am just really curious how this is addressed in coaching, since the Google was not able to answer my questions.

The Lasting Effects of Bullying

I haven’t posted much about this past year with Eliza, because those posts probably would have been filled with anger and venom at the bully who tormented Eliza last year and the system that failed her. 

As I wrote in my last post Eliza was the target of a bully at school. And I mean a real bully, not just some kid who occasionally acted inappropriately (because let's face it "bully" is an overused term to describe any kid who didn't play well with others in the school yard). 

Because of the bullying, Eliza went from a child who loved to school to one who begged not to go. 

From a child who was not irrationally attached to me, to a child who would say at night that she wanted to go back to being an embryo in my uterus so she would be safe.

From a child who loved the noises and sights of the city, to one who wanted to move to Saba because there are no scary things or people on Saba.

From a child who enjoyed her five minutes of privacy while I stood outside our door while I took the dog out, to one who had to watch me from the window to make sure I was safe.

From a child who loved watching Taxi TV in cabs, to one who would close her eyes and cover her ears until I turned it off.

From a child who was not afraid to go out of the house, to a child who literally would not leave the house ... for weeks.

The first day Eliza cried and begged not to leave the house was awful for her, heartbreaking for me. It was the first day of summer vacation and my mother and I were taking Eliza to her favorite diner to have her favorite waffles. The diner is 100 feet from our building. Eliza made it ten feet from our building entrance and then ran back and hid in the bushes sobbing and shaking.  She did not know what she was afraid of, just that she was afraid of everything out there, bad things that might happen, things she couldn't even articulate.  We went back in and I hoped this would pass. Then it happened again and again. Eliza didn't want me to go to work, she was obsessed with something happening to me, happening to my mother. This was not just the typical 8 year old curiosity about when we are all going to die.

When we absolutely had to leave the house Eliza would either where a cap pulled down over her face or one of my scarves over her head.  She wore a special pin to protect her. We had to walk a certain route that was safe. Not only couldn't we take a bus, but we couldn't go near a bus since, thanks to the graphic ads on buses by the FX Channel. Eliza wrote a letter to the mayor (still unanswered) asking why such scary things were put on buses for children to see.

Eliza started seeing a psychologist to deal with her fears. In my nightly talks with Eliza at first she wouldn't tell me what she was afraid of. As time went on though Eliza began to tell me details of what she was afraid of. She was afraid of being sliced open, of being stabbed of being shot, to name a few. A pretty graphic list of ways she was going to die. After weeks of me gently asking her why she thought these things might happen she told me that those were the ways the bully told her she would die, apparently at his hand.

Eliza's anxiety has improved with months of therapy, reassurance and coping skills. She is less afraid, but still has many moments where she is so afraid she wants to be an embryo because she was safe then. We'll continue with therapy for the foreseeable future and I am hopeful things will continue to improve.

I don't know where the bully is now. Eliza is in a new school where she feels safe. It saddens me that a seven year old child could do and speak the things he did.  I am angry at his parents for failing to recognize he needed help. I am angry at myself for not realizing the extent of the damage he caused sooner. I'm not sure my anger will dissipate anytime soon. Maybe when Eliza feels safe again.

A Year in the Life of the DOE

And How It Affected Eliza

From those of you who read my Facebook posts you probably recall my various rants about the DOE and its policies ranging from busing, to assistive technology, to bullying and a whole lot more.

After a pretty miserable year Eliza is now a very anxious child with self-esteem issues so I think a recounting of the year's events is in order.  And at least I'll have all of this written down in one place to print out for the DOE and whoever else needs a reminder of how we got to this place.

The year started out fairly promising, Eliza had moved on to the 2nd Grade and was a pretty happy kid who looked forward to school.  The promise that the year held dissipated pretty quickly with the bus.  

Ah yes, the Special Ed bus. 

After dealing with OPT for since Eliza was 3, I was pretty used to the bus bullshit and had a nice investigator from OPT on speed dial.  I had gotten so good at filing complaints and checking OPT's website each day that I could file a complaint in my sleep.  But this year was different. You may recall that there is no age restriction for Special Ed busing.  I bet you're surprised that a 38 pound seven year can be placed on the same bus as a 200 pound 20 year attending high school (actually several 18 to 21 year olds).  I had the chance to meet Eliza's bus driver on the first day of school.  Wilfredo regaled me with stories about how much he loooooves women, his great dancing skills and his even better conversational skills.  He was so kind that he gave me, a single mom, his phone number, in the event I wanted a good time or just to have someone to talk with!  Now that is some service from a kid's bus driver, very much above and beyond what his union contract requires I am sure.

As much as that bothered me (and the OPT investigator) it was what Wilfredo did every morning after he picked up Eliza to take her to her school less than a mile away.  Eliza was always getting to school late, but this made no sense even with Manhattan traffic, Wilfredo only needed to drive down our street, make a left turn, drive 8 blocks and make a right turn to get to the school.  So channeling my inner Nancy Drew I decided to take a page from my favorite sleuth and follow Wilfredo (and this being Manhattan traffic one can do that on foot).  I quickly discovered that Wilfredo was stopping at Dunkin' Donuts, parking in front of the high school where his other charges attended and enjoying his morning cup of Joe and a box of glazed donuts.  So I taped Wilfredo a few times and then confronted him.  He had the best explanation ever!  If he got to school early they would add more kids to his bus!  So instead Eliza sat on a bus for 30 to 45 minutes with about 10 high school kids.

Thanks to my friends at OPT, Wilfredo was suspended pending a union hearing and Eliza was assigned to a new bus (which was better, until the driver showed a bootleg version of Godzilla to appease the high school kids).

And then there was the bully.

After the bus fiasco, Eliza came home one day, not even a month into school, and told me about a boy in her class who had thrown her on the ground and tried to choke her. No particular reason, I guess he just felt like picking on someone that day.  Luckily a friend came to Eliza's aid and got an adult.  The boy was no longer permitted to attend after school (which is privately run on the school grounds), but after a day out of school he was right back at it.  While calling Eliza "stupid," "dumb," "baby," making fun of how she runs or plays ball on a daily basis may not seem as bad as choking her, the affect was nonetheless the same.  Eliza became unsure of herself, more isolated and her self-esteem suffered.  Because to a 7 year old when your classmate is calling you stupid, some part of that 7 year old starts to believe it, no matter how much reassurance she gets from those who love her.  

After being assured that Eliza would be kept safe, low and behold, this boy cornered her in a room and pointed a triangular shaped MagnaTile in her chest (leaving a small mark) and told her he was going to kill her.  As you can imagine my head burst into flames when Eliza told me this (note there was no note or call to me from the powers that be).  I know you are just dying to hear the punishment for this assault ... are you ready ... the boy had five coins removed from his behavior chart.  Pretty serious punishment don't you think?  Not.  But even more curious was when I spoke with the school about this, I was told that "in the child's defense," Eliza had been quite rude to him.  I have always tried to remain calm when dealing with the DOE, and school personnel but I could not help but scream "Are you fucking kidding me?  Did you just say that?"  I asked if by "rude" did he mean that Eliza would say in a loud voice when this boy came near her "I don't like you" "Leave me alone" "I'm not your friend" and things of that nature.  Yes indeed this was Eliza's rude behavior.  I was delighted to hear that Eliza had been following my instructions! It is sad that I had to teach her to say these things loudly but I thought it was a much better alternative to teaching her to hit the kid back.  Apparently this last event was one in a long string of behavior issues and the boy was gone shortly thereafter.  But the damage had been done.  Oh, and by the way, when your kid is the one being tormented the DOE apparently doesn't require the school call you, only the parents of the bully, or maybe they just avoid calling you to avoid a kerfuffle.  

Good to know you have to regularly ask your child "did Little Johnny assault you this week?"

And we capped off the year with an insanely long delay in getting Eliza's IEP amended to allow her to use one of these things:

What pray is this magical device?  Why it is a portable word processor for children who have issues that affect their ability to write.  Now you would think I was asking the DOE to provide Eliza with a $3000 laptop (and I did offer to have Eliza use her own Notebook from home ... but no, can't do that). This thing costs the DOE under $200, certainly not a dent in a budget that pays Pearson tens of millions of dollars for workbooks, test prep materials, test, etc.

There is no great mystery why Eliza needs this.  Her fine motor function in her dominant hand is in the 4th percentile.  She also has some processing and working memory issues that make writing very, very, very hard.  You would think the DOE would be delighted to offer up one these, especially after reading the very pricey neuro-psych report and me being repeatedly told "oh Eliza would do so well with a word processor!".  As an aside Eliza has been typing all of her homework since the beginning of Second Grade so there should be no surprises there.  But noooo.. Parting the Red Sea had to be easier.  First the paperwork wasn't right.  Then when it was corrected the DOE took all of the time allotted to have the AT eval on the last possible day. Fifteen minutes into the eval, the very lovely evaluator wondered out loud why this had not been done sooner.  So we began a trial with a particular device to see if that worked.  Of course the device was supposed to be used during certain periods, but the powers that be decided that it would be best to have Eliza use it when it was most convenient to them.  Huh?  I did not realize that convenience for the teacher was the guiding principle behind the IDEA.  So once again my head burst into flames when I was told "we were being "nice" letting Eliza use it more often" (said with great enthusiasm).  While I wanted to repeat the line "Are you fucking kidding me?" I decided to use this as a lesson in how to deal with parents whose kids have IEPs.  My gentle wisdom (okay so I wasn't so gentle) was to never, ever, ever tell a parent that you are being "nice" or "doing a favor" when you are carrying out the bare minimum that the law requires you to do.  Apparently the logic of limiting the use of the word processor was to "force" Eliza to learn to write by hand.  I asked if Eliza instead needed a walker would she only get to use it during PE and be forced to go without it the rest of the day to buck her up and walk better?  The answer I got was "well that's not the same."  Sadly I had to point out that it was in fact the same. That if a child needs a device, any device, per her IEP, then you have to use it in accordance with the IEP and your judgment (and utter lack of experience in these areas) does not supersede the mandate.

But happily the school year has ended and Eliza is doing nothing but being a kid this summer while I cross my fingers and rub the Buddha belly that life in a new school next year will be better.

Hey There! We're Not Dead!

Nor have we moved off the grid.  

Well, we did move, but I don't think moving 7 blocks in Manhattan constitutes a major move ... unless you decide to have all three generations of Richter girls under one roof.

Yup, my mother is now a full fledged New Yorker once a again.  Her sojourn in the Garden State came to an end last fall and she, Eliza and I now live together.  The decision to move in together was well overdue.  My mom living alone in NJ and Eliza and I being only able to visit on weekends was not the best arrangement.  So after much thought we took the plunge.  Three generations ranging from 8 to 91 has its challenges at times, but the benefits outweigh the hurdles we occasionally face.  However, my mother and I will never agree on the right way to cook rice. 

And we have a fourth edition to the family in the form of Pikachu, our rescue dog.  Sadly we lost our beloved cat Bosley shortly before my mom moved in with us.  Although Bessie was not too thrilled when she discovered Eliza and I surprised her with a dog, she has come to love the little fur ball and I think she is jealous that he sleeps in my bed not hers.

This school year has presented more challenges for Eliza than one kid should have to shoulder (or that one parent should have to deal with).  In the past two years her class size was manageable for her and she had the great support.  This year Eliza's class increased in size by almost one-third and it has just been overwhelming for her.  To make things more difficult she was continually bullied by another student who began with verbal taunts (baby, stupid, dumb) and then escalated to violent behavior against Eliza.  Despite a DOE "no tolerance" policy for bullying, he physically assaulted Eliza on two occasions and even went so far as to say he was going to kill her. It appears that the "no tolerance" policy means that it takes almost 6 months to remove the offending student from the school.   

In the DOE's continued slow boat to China method of addressing issues, it took far longer than it should have for Eliza to have her Assistive Technology evaluation.  Eliza will now be given a word processor for class work, which she can also use at home.  Given that her fine motor function score for her dominant hand was in the 4th percentile, being able to type her classwork should be a great help.  She has been typing her homework almost all year and it has helped to diminish the angst that homework creates.  But more on the DOE later ....

Eliza is counting not the days, but the hours until school ends and I can't say I blame her given this past year in school.

June 26, A Big Day

June 26th is a big day for Eliza.  This day Eliza will finish First Grade, exactly 7 years to the day  she came home from the NICU. 

I can vividly remember wheeling Eliza out of the hospital in her big bright red stroller with my Mom and Dad, oxygen and monitors in tow, a bag full of medications, a list of more doctor referrals than I care to count and a mixture of sheer joy at just finally having my baby to myself and abject fear of not knowing if I could do this alone.

When I look back over the past seven years, there were many, many times in Eliza's early years when I could never envision Eliza even attending a typical school, let alone thriving in a typical school. Eliza does have extra support in school and this most certainly helps her to thrive in school, but she can hold her own pretty darn well against the typical kids.  And this makes all the hard work and struggle over the past 7 years well worth it.

Not long ago someone asked me when the anxiety of the NICU and the period immediately after leaving the NICU goes away.  I suppose for some the anxiety magically disappears, but I think for many parents, like myself, the anxiety and fear lessen and morph into something else, but is always there (I still cringe when I see the NICU phone number pop up on my caller ID).  You spend so much time in the NICU waiting for the other shoe to drop that you just assume there will always be army boots falling on your head.  But over time the shoes that drop are more like slippers landing on your head, or maybe your head has just gotten harder.  There are still the occasional army boots that drop, like we have had this year, and while I am more educated about Eliza's medical issues and can process that information with less angst, It still takes me by surprise when something happens and with surprise comes anxiety,  So I think when people talk about accepting things you cannot change, I suppose I should just accept a certain level of anxiety.

The past seven years have taught me to never underestimate my child or any child,  They are stronger than adults are.  I am certain that if I had needed close to 7000 hours of therapy to do what my neighbor does with ease, I would likely have given up when things seemed just "good enough."  But not Eliza.  Although there have been therapists that weren't a "good fit" (a euphemism for "therapist sucked") most have been wonderful and Eliza has happily plugged away learning how to make her body work right, whether it is running, jumping, climbing, learning how to drink from a straw and chew some food, learning to how to form words and sentences, years and years after which typical kids could do so with ease.  We still have some goals that we need to reach like riding a tricycle or bike, getting dressed on her own,  handwriting and developing a coordinated kick so Eliza can learn to swim.  But you know what?  You can have a great life if you never ride a bike and plenty of people have poor handwriting..  Swimming is still a goal for safety reasons since Eliza's loves the water.  As to being able to get dressed on her own, well I've seen the way people dress and surely they could have used some help too.  Eliza has mastered skipping this year, so even if her running is never up to the standard for her age, she can skip and skipping is way more fun than plain old running.

A few years ago I had a little girl who couldn't communicate unless I carried around a 2 inch binder with a hundred PECS symbols and photos laminated and velcroed into the binder so in her frustration Eliza could point to what she wanted;  Now only 3 and half years later.Eliza can elaborate on why Pluto is only a dwarf planet, that the stars in the Orion Nebula are over 1 million years old, tell you what the Kuiper Belt is all about, discuss the difference between Van Gogh and Monet and speak German. So I think I can safely cross anxiety about communication issues off the worry list.

I also look back on the terrible dark days of the NICU when Eliza's body had begun the process of dying.  The conversations from those days are still so vivid.  But although Eliza has her share of medical problems, and some new and unexpected ones, I look at her now and wonder, how could anyone have ever thought she was dying?  But she was dying and I don't know what really stopped her from dying.  Sure there was a boatload of medications (with pretty sketchy side effects), but I also think, somewhere in her underdeveloped brain, she just didn't want to die.  And thankfully, she didn't, because if she had, part of me would have died too.  I think that was the tipping point for our relationship, which some people think is perhaps too close, but then they have not walked our path,

The best thing about watching Eliza develop over the past seven years is how she has matured into a very empathetic little girl.  She will walk up to a child crying and ask if they need a hug or if she can help them.  She will give her toys to a child who has none or who simply  who has less.  She is content not having a lot of "things" and prefers to making art to buying the latest plastic toys that she will lose interest in before the month is out.  I think these qualities will serve her well into adulthood. And she is one happy kid who wakes up each day with a smile and ready to (even on the days she awoken at 3 a.m. to head to the airport for our trips to Saba).

Eliza says she has 100 hearts.  She remembers her Papa and knows he can still laugh with her from where ever he is, but she also says she lost a heart when he died.  We have been blessed with family and friends who have shown amazing kindness for Eliza.  We have lost some friends and family who have either drifted away as life often takes us in different directions and we have lost some because they have chosen to be lost to us.  This journey has also brought us both amazing friendships as well, with people who we never would have met, had Eliza been born a healthy full term baby.

For seven years, Eliza has brought me joy and amazed me everyday.  And with the 99 hearts she has left, I hope she continues to bring joy to me and everyone she meets for a long, long time to come.

Homecoming June 26, 2006

Last Day of First Grade 2013

The DOE and the New IEP

I think we can all agree that in the best of circumstances each child should be educated in the Least Restrictive Environment.  I know of very few parents who jump and shout with glee when they are told their child needs an IEP.  I suspect most of us parenting in IEP land would be much happier to just be worrying about the latest exam prep for the newest Gifted and Talented program.

So as this spring's IEP meetings come to an end, I came across this gem under Special Ed News on the United Federation of Teachers website:  The Time is Now.  The article basically sums up that the teacher is an advocate for the student, not a pawn of the school district and that they need to recommend what is right for the child, which is as it should be.

The DOE and some administrators though seem to disagree.

My personal favorite quote in the article is the text of an email sent from a school administrator telling teachers attending IEP meetings the following:

“Please be advised of the following changes when recommending ICT for a student:

The maximum number of periods for a full-time ICT student should be 25 and not 30. The periods designated for ICT should reflect the subjects taught in the student’s classroom. Please do not designate any ICT periods for cluster classes.”

What the hell was that administrator thinking?  Did he or she think that an email directing teachers to limit ICT (Integrated Co-Teaching) services on a school wide (or maybe District wide) was a great idea?  I mean really, if you want teachers to jack kids over at IEP meetings, at least just whisper in their ears, don't put it in an email that will surface one of these days.  You think people would have learned not to put this stuff in emails. You'd think most DOE administrators are old enough to remember that Nixon never would have gotten busted if he hadn't tape recorded his conversations.

But then again, people like me are delighted that they were dopey enough to put it in an email since there is now a nice paper trail of decisions not being made in the best interest of the child but rather in the best interest of the school district.

Luckily I am reasonably happy with Eliza's IEP (well as happy as any parent ever is I suppose).  But what about the parents who are unhappy?  Or were convinced by the IEP team that reducing ICT services was in the child's best interest? Or who don't have the financial, emotional and mental energy to fight?  What happens to them?

Teachers have enough on their plates as it is, between teaching, filling out a million forms for the DOE, prepping kids for tests, changing their curriculum at the whim of the DOE, dealing with wacky parents,   The list of what they have to do is endless.  Now the DOE, or at least some administrators, want them to convince parents that their children need less services so the DOE can save money under this new scheme?  

If the DOE wants to reduce services to save money, let them put on their man panties and show up at the IEP meetings and say "hey we're not paying for this stuff anymore."  

Don't put teachers between the rock and a hard place.

First Grade Art Review