October 28, 2013
Thirty Day Review
I wait patiently to be buzzed in, one hand making the straps of my purse stable on my shoulder, the other rummaging through its contents to make sure my piece of paper with my important questions on it remains inside. In a few moments I pass the necessary inquisition and am ushered through, signed in and seated, waiting to be escorted to a room where Zach’s teachers will be awaiting my arrival.
Soon the school counselor comes to collect me, and we make small talk as we follow the meandering hallways of my son’s school, and finally reach our destination. I take a deep breath and cross the threshold, a bit nervous as this is a pivotal day in Zach’s life.
Today is my son’s thirty day review.
For those of you unfamiliar with the term, the thirty day review examines a student’s special education placement, in our case, a placement in a full-day inclusion class. Zach is part of a community of a number of neurotypical peers as well as children with individualized education plans (IEP), and is fortunate to receive instruction from both a special education teacher and a regular education teacher as well.
I am anticipating that things are going well primarily due to the absence of any negative notes home, coupled with a daily glowing report from my son regarding his teachers, classmates and school activities. I want to hear he’s successful here, that the impulsivity that renders him a challenge has been contained enough to make this a great fit for him. I regard both teachers’ faces and exhale slightly- both are smiling, always a good sign.
I unclench my hands and return their grins, thanking them profusely for making my boy feel so welcome, for all their hard work. I ask how he’s doing, followed with a “is this the right fit” chaser. I am rewarded with a positive response, which allows me to unclench my hands even further. I am told he is bright, seems to be fitting in socially, and still retains the impulsivity/stubbornness that at times makes him difficult to reach.
Together we hash out a plan to conquer one class where he is experiencing challenges, and before I know it the meeting is concluded, truly a stellar start for a boy with a dual diagnosis who often struggles to harness his boundless energy and inquisitive nature. I thank his teachers again and take my leave, proud I sort of remember how to find the exit, relieved the meeting has gone so well and is concluded. I sit for a moment in my steamy car and reflect on what has just transpired, elated that my boy is doing so well. He is thriving in his classroom, finding his niche, his unique self celebrated and embraced.
As I wait for my air conditioning to finally kick in I think about how far he’s come in his continuum of learning, and how I’ve evolved with my perspective regarding his education as well. Five years ago when sickness claimed him and left a mostly speechless, often physically suffering toddler in its wake, I used to lay awake at night and pray for a day such as this. I asked for a day where my youngest son would thrive academically in a mostly typical school environment, a day where he was no longer suffering.
During those dark months after Zach’s regression my goals seemed impossible to attain as we watched him struggle to regain milestones he had once achieved with ease. He was a shadow of his former ebullient self then, a wisp of what he had once been.
I wish I could go back in time and tell my former, scattered self that while a half decade later he would still have an autism diagnosis, I would one day perceive his type of autism as a gift. I would share with that overwhelmed and sometimes distraught mom that while there would be many hurdles to conquer, that his unique self would once again shine through, lighting up our days.
I would assure her that her son’s affectionate disposition would again resurface, that his coveted hugs and kisses would once more become a staple of her day. I would tell her that getting him into that inclusion classroom with its trappings of the “typical life” would not matter so much to her anymore- that his happiness, his ability to achieve the life he wants, would take precedence over his mother’s desires.
Finally I would hug her, give her some chocolate, and tell her it really would be okay.
At last my air conditioning kicks in, and I back out gingerly into the school parking lot elated at what has just occurred, but mostly elated by how it’s all turned out. My boy has his challenges, and like most of us, will likely have them throughout his lifespan. There will be further hurdles to conquer, and chasms to cross. There will be days it will all seem untenable, chased with days of unlimited joy.
But today, there is just a brave little boy with an indomitable spirit who loves his school, and is loved in return. And today, that is enough.
October 20, 2013
“Because You Love Me”
I am currently between careers, having spent the last ten years working with my kids after having taught in elementary school for a glorious dozen. Now that my last child has entered full-day school (and believe me, love my kids, but as a good friend used to say, “the store is closed”) I find I’m in a “tween” stage, caught between reflecting on where I’ve been professionally, and projecting where I’d like to be down the road. I’m taking somewhat of a “breather year” as I figure out what Mommy would like to do next, and as such I have the luxury of volunteering in my son’s school, and am able to work with an extremely vibrant PTA.
The other week I had the opportunity to speak to Zach’s entire school about a number of literacy programs the energetic Literacy League has created for the current school year, and as I began my speech I could see Zachary up on his knees in the audience, face rapt, focusing on my every word (I like to think he was cheering me on). After school that day I asked him why he thought I’d made my “appearance” that morning, and he casually responded with “because you love me,” which is my standard response any time he asks me why I’ve done something for him.
I had to smile at hearing my words parroted back to me, felt compelled to tell him he’s right, but tell him why I love him too. There are too many reasons to encompass why I adore him in one blog post (much less one blog), but here are just a few that I need to share with him before my musings will embarrass him completely (and those days are drawing near, believe me).
Because your gap-toothed grin illuminates a room.
Because your unique world-view challenges all my preconceptions of how things really are.
Because you love telling people your brother has a lot of autism, and because you’re more than okay with it.
Because you can remember every character from six Star Wars movies without hesitation, and whether or not they used the Force for good.
Because sometimes you bestow kisses upon me for no discernible reason whatsoever.
Because you feel your type of autism has brought you innumerable gifts.
Because your very presence in this world shatters people’s preconceptions about autism.
Because you believe that being different is okay.
Because if you want something there is no challenge too large for you to overcome to acquire it.
Because you love the beach and chocolate too.
Because your tenacity of spirit engenders a huge level of respect from your grateful and awe-struck mother.
Because when you tell people you love them you often tell them why.
Because (most of the time) you treat those around you the way you want to be treated yourself.
Because the myriad of questions you ask me daily are fabulous (thank God for Google).
Because you make me want to be my best self.
Because sometimes you make me laugh so hard I cry.
Because every single day you inspire me to try to make the world a better place.
Because I love you with all of my heart, and all of my soul (okay, that one’s gratuitous, but it’s a good place to end).
I love you Zach, all the way around the world and back.
October 17, 2013
Brick SEPTA Meeting/Halloween Fest
As I help Justin up that first big step of the slide inflatable he so adores I see a witch whip by me out of the corner of my eye, and hear Zach gasp with delight. Pretty soon a young Luke Skywalker queues up in front of me for his turn, and Zach dashes off with his father in tow for the far more challenging inflatable maze which has caught his interest.
I soon capture on film my son’s joyous face as he hurtles down to greet me, and we are off to collect his brother. My youngest asks “what’s next?” and I lay out his choices for him- a hayride, pumpkin painting, and both boys’ ultimate favorite, free popcorn. Zach takes off for open field at a dash with me trailing behind, and I smile and wave at familiar faces out on this gorgeous fall afternoon.
It’s just another day at Halloween Fest, one of Brick Special Education PTA’s many fabulous annual events (hosted along with Brick Recreation), and we’re all lucky to be here.
As I head back from the hayride I spot Brenda Calderone, current PTA president, and we exchange greetings and I thank her for her efforts to create such a fun day for our families. Brick SEPTA hosts a number of events each year, from Halloweenfest to an Easter Egg Hunt also at Havens Farm, to dances for tweens and teens with disabilities.
They have monthly meetings as well, and it’s often the same core group of parents who attend, so we’ve gotten to know each other a bit throughout the years, and a camaraderie has developed. The parents who attend have children with a wide range of disabilities, from ADHD to Downs Syndrome and others as well. At most meetings we’ve had the privilege of having a school administrator attend, as well as some teachers from the various schools which educate our children.
Traditionally the first meeting in the fall is a “meet and greet”, with a number of agencies attending who cater to families. I particularly enjoyed that particular meeting last year as I won a massage in their raffle (yes, the girl who never wins anything), and other prizes were distributed as well.
Free donuts AND door prizes, you can’t beat that.
I’m writing about the Brick SEPTA today to invite more parents to attend their next meeting, which will be held at the Brick Primary Learning Center (PLC), on Monday, October 28th, from 6:30 to 8:30. I write this knowing it’s difficult for even the most “typical” families to spare a parent in the evenings, and for those of us with kids with disabilities it can often be a Herculean effort to get out for even an hour.
The truth is however that this is a wonderful avenue in which to come together as a community to learn from one another, to share, and to provide support. I’d love to see it grow. Every year the SEPTA Board has worked incredibly hard to provide activities for children with special needs, and my own children have enjoyed their events with gusto. The Board hopes to add even more activities throughout the year, and I know they’d love greater participation and a larger attendance at all of their meetings.
Again, the next meeting is Monday, October 28th, 6:30 at the PLC, and if anyone reading this has the opportunity to attend, I truly recommend you do so. Thanks in advance for attending!
Follow Brick SEPTA at Brick Town Special Education PTA SEPTA
Victory
“Let’s go back to the car Justin, mommy forgot her cell phone” I intoned quietly, wondering if my boy understood both the demand and the fact that we’d be returning to the amusement park. “We’ll come back, I promise” I said with a smile, then headed toward the gates of Great Adventure as if this was just part of the routine, that we always have to schlep back to our vehicle and go through security twice every time we come here.
I look down just a few inches into my son’s face to see if any storm clouds are looming, but his countenance is complacent, his behavior compliant. We continue to head toward the exit, stopping briefly for our stamp. To anyone watching, it looked like the simplest thing. A mother and her son walking calmly through a parking lot, hand in hand, the boy striding along beside her without complaint.
Except it wasn’t the littlest thing. It was huge.
My son Justin is considered to be on the severe end of the spectrum, a non-verbal boy whose intelligence illuminates him and whose gentle nature radiates from him to all whom he knows. He is, generally, a joy to be around, but like many people on the severe end of the disorder he’s had his challenges too. There is a second diagnosis of OCD which often plagues him, holding him hostage to a variety of ritualized routines which render him unhappy and anxiety-ridden.
There are times, though thankfully they are far fewer now, where he is aggressive, moments where it seems no remedy for his ire is in sight. Those are the daunting aspects of his type of autism, symptoms which we work mightily to eradicate not just for how they affect our family life, but for how miserable they make my son as well.
There are far less daunting challenges also, many of which through repetition and reward we’ve been able to lessen over the years, a fact for which I am grateful. Two of these issues center around waiting, and disruption to routine. Both have generally been anathema to my boy, and both are issues we’ve worked mightily hard to dissipate.
We are fortunate that we live near several boardwalks and amusement parks, and from the time Justin was quite smile we practiced waiting in line for rides, my tolerating his pinches and whines because I hoped over time he’d learn to tolerate the time on line. I’ve also made certain we didn’t adhere to a strict routine concerning our selection of attractions, as this could make it near to impossible for Justin to ever try anything new, a concept which is generally not his favorite thing to do.
The older I get it’s not really mine either, but that’s a story for another day.
So as we head toward my waiting smart phone which I require today to coordinate meeting with my mother later on I mentally review all that could happen as I always do in these situations, and attempt to foresee what could be the most troublesome aspects of this trek. As we head around the fountain I feel him pulling slightly toward the waiting mecca of Skull Mountain, but I gently remind him where we’re going, and he complies.
We sail through the exit and subsequently the parking lot with nary an issue, and I exhale as my boy does not attempt access to the car, watch as he ignores his penchant for leaving many venues minutes after his arrival. I lock up again and tell him we’re going back, and he reaches for the hand he always holds, tethering him to me in so many ways. He doesn’t balk at the slight wait at security, attends patiently as a park employee does the most thorough search ever of my goodie-filled bag, and I hold my breath hoping our illegal juices will not be confiscated.
They are ignored, and Justin and I resume our trek to the entrance where our stamps are given the briefest of glances as we are waved on through. I bend down for a moment to tie Justin’s shoe, and breathe. Today, there was no whining, no tantrums, no battles. After years of work there was simply demand, and for both of us, reward.
From the outside, it simply looked like a boy and his mom walking through a parking lot, hand in hand, without complaint.
Except it was so much more for both of them. It was victory.
It was peace.
October 7, 2013
The Talk
“When I was a little boy did I have autism?” my smallest son asks as he pauses momentarily in his teeth brushing duties. I feel my heart skip a beat as I realize this is “the moment,” followed by the thought chaser that his father isn’t home, and I’ll be handling this myself. Jeff and I decided years ago to wait to tell Zach about his autism until he started asking questions, and privately I decided to also wait until my mommy gut told me the time was right. That tiny voice which has been both my solace and saving grace all these years tells me this is my chance, in the quiet confines of our guest bathroom, to tell him.
It’s time for the “autism talk.”
I wrap his Thomas the Train towel more securely around his tall but lithe figure, and settle him down on my lap. I tell him when he was eighteen months old he got sick, had a high fever for days, was miserable. I tell him that after that illness he seemed to lose his words, was relegated to a vocabulary of “mama” and “juice” that bore no resemblance to his formerly loquacious self. I share with him that loose bowels tormented him for weeks until we removed gluten from his diet, and that in time, his tummy slowly healed, his words returned, as did the light in his eyes that had so entranced us. I tell him that a doctor told us he had a “little autism”, not a lot like his brother, but a little all the same.
He asks me if he’ll always have it, and I tell him that most people have it all of their lives. He pauses and processes, and after this momentary break I remind him his brother has it too. I tell him that autism is what allowed Justin able to read at the tender age of three. I tell him it’s what makes him so smart, so creative; and that autism gave him the gift of a phenomenal memory, is what enables him to retain all the dinosaur facts he loves so well.
I proceed to regale him again with stories of famous people presumed to have autism, ranging from contemporary figures to geniuses of the past like Albert Einstein, Mozart, and Thomas Jefferson. I share with him once more the fantastic contributions they have made to the world, that like Mozart and Michelangelo he loves and excels at music and art as well. I tell him that autism is what helps make him so unique and special, that his family loves him, that so many people love him. I tell him for the thousandth time how in awe I am of him, how my heart fills with pride that he tries so hard every day to conquer his fears and challenges. He hugs me and responds with exuberance that he will write a letter to George Lucas the next day and ask for a list of all the Star Wars characters who have autism.
Perhaps someone can help me out with finding his address.
After his George Lucas declaration he bounds from the bathroom to his bedroom to select his favorite pajamas, and I remain seated momentarily, allow myself to catch my breath after this momentous moment. I can hear that he’s moved on in his thought processes and is composing a story about dinosaurs without autism, that the window on this topic has shut for now, but remains wedged open. I think back over all the years I’ve been building to this moment, the times my husband and I have touted Justin’s innate intelligence, his affectionate nature, all the wonderful traits that this child with severe autism possesses in spades.
My mind wanders to all the discussions we’ve had about contributions made by autistic people, how smart they often are, how innovative. My son selects this moment to run in to ask me if there were kids in his pre-school with autism, and when I respond in the affirmative, he tells me that I’d put him in the right place.
Not only did this talk go well, I get validation. This is quickly becoming my favorite conversation ever.
Soon his father comes home, and I quickly sneak in that we’ve had “the talk” before he enters Zach’s bedroom, and before my husband has the chance to take it all in, my son yells “Daddy, I have a little autism!” and throws himself on his father, wrapping torso and limbs tightly around my spouse’s still-moving legs. Jeff looks at me and mouths “That went well,” and I smile in response, and try to corral an excited six-year-old to bed. On this night he asks me to cuddle with him as I read him his story, and I happily comply, as now that he is a “medium boy” I am not always invited for this treat. Soon kisses are dispensed, and I prepare myself that he may not capitulate to the onslaught of sleep, that all of this information may compel him to leave his bed on several occasions.
Several? Let’s make that six.
I head downstairs for that glass of wine I’ve rightly deserved, at peace with my declaration, enthralled with how it went down. My smallest son has autism. He knows it now, and our talk could not have gone better. His reaction was elation, coupled with pride, chased with joy at the gifts his particular brand of autism will bring to him.
And as I banish forever all the years of fear that have led up to this moment, I couldn’t be more proud myself.
October 1, 2013
Bullying: Signs and Prevention
Editor’s Note: This article was reprinted from the September issue of Exceptional Parent Magazine
One of the worst experiences a child can face is bullying. Twenty-three percent of public schools reported that bullying occurred among students on a daily or weekly basis according to the 2011 National Indicators of School Crime and Safety. In this digital age, opportunities for bullying have expanded from classrooms, playgrounds, and buses to include cyberbullying, a particularly insidious form of cruelty as it is often done anonymously.
Among the most targeted groups are special needs individuals, especially those with autism. Preliminary results from a survey of parents of autistic children conducted by the Autism Speaks supported Interactive Autism Network revealed that 63 percent of 1,162 children diagnosed with autism spectrum disorder ages six to fifteen had been bullied at least once.
If not halted in its tracks, bullying can have life-long ramifications, such as depression, anxiety, and suicidal thoughts. Even bystanders are affected by the experience. Here are some signs to tell if your child is being bullied, and what actions to take for both teachers and parents to stop it in its tracks.
SIGNS
1. Problems at school begin to crop up, including frequent trips to the principal and detentions. Your previously well-behaved child is now in trouble constantly, and is often engaged in attention-seeking behaviors.
2. Your child may seem withdrawn or depressed, unable or unwilling to engage in favorite activities or make contact with friends. Events which would normally entice your child to participate hold no allure no matter how hard you cajole him or her to join the crowd.
3. Issues with sleeping or eating may occur. This may include sleeping too little or too much, and the same with eating issues. Any deviation from the norm is suspect.
4. Your otherwise compliant child reacts angrily or violently to situations in the home where he or she does not get their way. These reactions may occur over big issues, or seemingly small ones.
5. You notice that many of your child’s belongings are either lost or damaged, and there’s no rational explanation for why this occurred. Warnings that items may not be replaced may be met with indifference.
6. Grades begin to plummet, and your child seems reluctant to study or do homework. Your child may not seem to care that his or her grades have fallen, and any plans to rectify the situation may be rejected.
7. Suspicious bruises or injuries occur, and your child chooses not to tell you how he or she sustained them. Your son or daughter might also lie about how they were sustained.
8. Your child claims more and more frequent illnesses to avoid going to school, or is chronically late in the morning so that he or she must be driven. Often a bullied child will simply refuse to go to school without stating why.
9. Your child shuns all types of social media. If your child is typically attached to his or her phone, computer, or iPad, this is a huge warning sign.
10. You hear your child talk about injuring him or herself, or speak about suicide.
PREVENTION
1. Talk to your child every day about his or her experiences with peers, including interactions in class, on the playground, and if applicable, on the bus. Monitor their time on computers, phones, iPads, etc. You are their first opportunity to secure help. If your child feels comfortable talking to you about his or her day, it may be easier for him or her to secure assistance.
2. While discussing bullying with your child engage in role-play with him or her, acting out situations in which he or she is the bully, the victim, and the bystander. This gives your child practice for real-life situations. It may also facilitate greater communication between you and your child.
3. Make sure that your school has a “no tolerance” policy for bullying. If your child is being harassed ask his or her principal for your school’s anti-bullying plan, and the steps the principal will take to make sure this behavior will not continue. If there is not an anti-bullying program or plan in place, insist that one is created. Some states have a mandate that every school has a program; find out if yours is one of them.
4. Encourage the administrators at your child’s school to implement school-wide programs about the effects of bullying, how to spot it, and how to prevent it. Make certain these programs address the effects on bystanders as well as victims and bullies. Ask if these programs encourage bystanders to speak up for victims while protecting their anonymity.
5. Ask your school to adopt a program pairing neurotypical children with their special education peers in a safe environment. Nothing promotes acceptance like the opportunity to interact with one another. This pairing will also hopefully encourage typical children to stand up for classified students if they are bullied. Such programs are not only beneficial to classified students, but to neurotypical ones as well.
6. Talk to your school’s administrators about creating a cyberbullying policy. Ask for workshops to be conducted so that teachers, school staff, and parents are informed. Make certain it is widely publicized throughout the school. Ask for literature to be sent home to parents which outlines steps on how to talk to children about cyberbullying.
7. Ask for formal lessons to be implemented on cyberbullying within each classroom. Make sure these lessons outline exactly what constitutes the act of cyberbullying, and what steps students can take to report it.
8. Make certain your child’s school is taking adequate care to supervise playgrounds, lunchrooms, hallways, and bathrooms. These are prime areas where bullying can occur.
9. Ask your child’s teacher to incorporate lessons on kindness and cooperation into the curriculum. Sometimes a child simply needs to hear the words said to know how both to behave properly, and to help others.
10. Encourage your child’s teacher to hold weekly classroom meetings. This gives students a chance to air grievances, and hopefully to find common ground with other students they might find “different” than them. Make certain the teacher creates a safe environment where all students feel secure in sharing with each other.
11. If bullying occurs on your child’s school bus, ask school administrators if bus drivers and aides have had bully prevention training, and if not, request that it be implemented.
There are a variety of resources available to assist you in helping to spot and stop bullying. Among those are the following.
Autism Mommy-Therapist 