December 2, 2013
This last few weeks have entailed more excitement than usually transpires in a year around here, and I have much to tell all of you. I’ve already shared the fabulousness that is my eldest child in regards to his hospital stay and our trip to Disney, but I would be remiss if I didn’t share my newfound knowledge as well. I had the good fortune to attend Autism New Jersey’s annual conference recently, and managed to participate in three workshops which were informative (and even entertaining) during the course of the day.
One related to residential placements which is a post for another day. The last two I attended were entitled “Navigating Services”, and pertained to discussions regarding the New Jersey Department of Children and Families, the New Jersey Division of Developmental Disabilities, Medicaid, and SSI, among a myriad of other topics.
I consider myself pretty well informed on the above issues as I am frankly terrified of missing something that would be to Justin’s detriment (I’ve found a heightened state of anxiety makes me more meticulous when conquering paperwork), but I learned a lot during the sessions, and would like to share my knowledge with all of you here.
The presenters were S. Paul Prior, Esq. and Maria Fischer, Esq. of Hinkle, Fingles and Prior, P.C. They were extremely knowledgeable in their presentation (which at times was hilarious even though they are lawyers), and I thought some of their facts would be helpful to all of you. It’s a lot of information, and they shared even more information with us than I will include here. The facts below were in my opinion the most important pieces of information, and a good place to start with educating yourselves. I’ll present them in bullet form (that’s how I retain anything these days). I hope this information will be helpful to all of you!
· Before 1/1/13 the DDD (Division of Developmental Disabilities) provided services birth to death for individuals with autism or other developmental disorders- now the Division of Children and Families (DCF) provides these services for individuals up to the age of 21
· EXTREMELY IMPORTANT- Any individual born after 1/1/97 MUST reapply to the DDD when he or she is 18 years old, even if they’ve registered with the DDD in the past (this is the big “secret” nobody seems to know about)
· To qualify for DDD or DCF services the individual must exhibit functional limitations in three out of seven areas of “major life activity”:
-self-care -receptive/expressive language -learning -mobility -self-direction
-capacity for independent living -economic self-sufficiency
· Children found eligible for services by the DDD prior to 1/1/13 DO NOT have to apply to DCF
· When applying for any services you will have to fill out an adaptive behavior summary form. It is imperative when filling this out that you answer the questions as if you comparing your child to a neurotypical child. THIS IS NOT THE TIME TO DISCUSS YOUR CHILD’S PROGRESS OR ACCOMPLISMENTS
· Some of the services DCF can provide include respite care, behavioral supports, residential placements, and in-home support
· At 21 your child will receive services through the DDD as long as the individual is eligible for Medicaid. At age 21 or 22 your child’s educational services will cease. This is where the DDD can provide both day programs and residential services. Individuals can be placed on the Community Care Waiver (CCW) waiting list for residential services if parents are both 55 and older; the person caring for the individual with a disability is no longer willing or able to care for the individual; there is a risk of abuse or neglect; one parent has a chronic condition and can no longer care for the individual; the person’s safety is at risk due to behavioral or physical needs. Unfortunately, the wait for residential services can be from 10 to 12 years after eligibility is established
· At 18 SSI (Supplemental Security Income) kicks in. The individual with a disability may not have more than $2,000 in assets at any time, or make more than $741 per month. FAILURE TO HEED THESE RULES WILL RESULT IN FORFEITING SSI FUNDS
· Applying for SSI automatically gets you Medicaid
· IMPORTANT- MAKE SURE NO FUNDS ARE IN THE CHILD’S NAME. If your child inherits anything from you or a grandparent he or she will be rendered Medicaid ineligible
· SPEND THE MONEY MONTHLY on food, clothing and shelter. It is supposed to be spent on the individual, and remember, he or she cannot have more than $2,000 in assets in their name at any time
November 25, 2013
His hands reach up forcefully to free his scalp from its gauzy restraints, and for the hundredth time I say “No Justin, it has to stay.” Although my son responds with obvious distress and a few more furtive attempts at freedom, he complies. My mom and I run around trying desperately to distract him, and achieve mecca when the hospital’s child life specialist brings a cache of “light up and spin” toys, his favorites from home being so yesterday. We are in our fourth hour of “EEG captivity,” and the adults in the room are all wondering how we’ll get him to bedtime, much less through the night where most of the important information will occur.
Finally our dinner arrives, and as if by magic my happy boy returns, his desire to pull off his cumbersome headgear quelled. I look at my mom and smile in relief, as since we’ve made the supreme effort to get here by God I want to compile this data. Eventually Justin turns off the television himself and hands me his favorite book, and with astonishment we realize the child who has only spent two nights outside of his own room in the last seven years is actually ready for bed. We quickly comply with his demands, darkening the room as he likes, turning on his sound sleep for white noise and comfort.
I curl up next to him on the bed and rub his back as I sing his night songs, see his breathing even out, watch him as he slips into slumber. My mom and I quickly clean up and organize the space for my husband’s impending shift, and we quietly high-five each other, as not only is Justin unconscious which is imperative for the study, but we’ve managed to capture the episodes that indicate potential seizure activity.
Since epilepsy is often co-morbid with autism his neuro pediatrician thought we should do the test, and although we don’t like to subject Justin to unnecessary procedures, this one seemed important. My shoe catches on his errant sneaker and I almost take a tumble in the dark, and I contort my body to avoid making noise because I will do anything legal to keep this boy asleep.
I sit to avoid further calamity, and wish once again the hospital served wine.
As we wait for my husband to arrive I have a few minutes to reflect on our experience, which despite great difficulty has been a positive one. My son, who generally wants to leave even the most fabulous places in under an hour and loves his bedtime routine perhaps as much as his parents, has made it through the better part of a day with tiny electrodes placed all over his head, held in place by a gauzy substance that is certainly irritating the hell out of him. He has born these indignities with some protest, but each and every time I’ve told him “No,” both in response to removing the offending head gear or his plea to leave as he shoves his shoes in my hands, he has complied with my refusals.
As I sit back in the hospital’s surprisingly comfy recliner I reflect upon how momentous today has been, how I could not have entertained even attempting this procedure even a year ago, how much Justin has matured, and with such grace. I think upon the different trajectory of my sons’ lives, how my youngest with mild autism will most likely follow a more traditional path, perhaps involving a spouse and children, most certainly a stint at college and career.
I muse that I will be proud of his collective accomplishments, the trappings of a “normal life” that will probably be his due. I gaze upon the slowly rising blanket of my slumbering son and feel to the depths of my soul that I am equally proud of this child as well, my son who tolerated the hands of strangers today, the confines of a hospital room, the indignities of electrodes monitoring the mysteries of his brain.
I contemplate the fact that every time I denied him his protest was coupled with a deep gaze into my eyes, a slumping of shoulders that admitted defeat, but an absence of aggression. I ponder how much self-control this action necessitated, how he contained his wrath, how he constantly shatters my expectations of him.
I walk over to adjust an errant swatch of his favorite blanket, feel his moist breath on my fingers, gently lean over to kiss the cloth so as not to disturb him. Tomorrow he will most likely return to his beloved home, this child who despite his severe autism has days dominated by affection, who at ten years of age is attempting to speak to get his needs met.
His accomplishments differ greatly from his sibling’s, but they are equal in stature, merit commensurate praise. I watch as he shifts slightly, perhaps chasing dreams of home, and my heart swells with pride, with love, with gratitude that he has helped us conquer yet one more hurdle in his often challenging life.
Soon my spouse will enter, and the changing of the guard will occur. But for these few moments I simply hold my mother’s hand, revel in the beauty of the boy before us, and let my unfettered pride reign.
November 20, 2013
Last week I wrote about my family’s first vacation ever, which happened to take place in Disney World. I spoke briefly about our experiences there, and talked mostly about Disney’s new Disability Service Access Card (DAS card), and how the system needs to be improved to accommodate all families with children with special needs. As I indicated last week, the new program worked for us. I am certain however it would now preclude some families with autistic children from taking a trip to Disney, or would simply make it prohibitively difficult to attend.
I’d like to share with you that I did eventually get off “hold” with the corporation and was able to speak to a live person, who actually listened to my concerns, took my suggestions, and indicated the possibility (again, I stress the possibility) of accommodations being made in the new year on a case by case basis. I’m not sure if this will come to pass, but my fingers are crossed, and yes, I’ll be calling them back down the road (squeaky wheel and all that jazz…).
So, while I wrote a lot about the new disability program last week I didn’t tell all of you much about our trip or share photos (trying to keep the kids alive is not conducive to picture-taking, had to wait for my sister-in-law’s fabulous zip file). I just want to go on record as saying I have never been more proud of my eldest son, who unfortunately caught a bug the day we left for Florida, but was a trooper none-the-less.
This same ten-year-old child who had never flown before and has spent a total of three nights away from his bed in the last seven years flew the friendly skies like a champ, and slept through four consecutive nights (a fact for which his mother is eternally grateful). Although it was quite clear he wanted to go home (grabbing my face frequently and saying his approximation of the word was a good clue) he hung in there, and when he began to feel better he clearly liked the rides, and even enjoyed a few of the attractions.
I’ll admit, he seemed the happiest on the morning I started packing, but I’m hopeful that now he has Disney in his “repertoire” he may enjoy it more when we go back, which I hope to do in a year or two. Justin was basically out of his comfort zone for five straight days, which for him is an incredibly stressful situation. He was so brave, and I’m so grateful he was, for this enabled our family to truly partake in the magic that is Disney.
I’m including a few photos of our trip. I hope you enjoy them, and if you are a family with a special needs child and are considering Disney as a vacation spot, I truly hope you can make the new system work for you, and that you have a fabulous time!
My boy was such a trooper…
November 13, 2013
It’s dawn, and I can already hear my ten-year-old son with severe autism’s “eeee” reverberate throughout the house, so I hustle faster to quell his enthusiasm just a bit so my six-year-old son with mild autism can get a bit more sleep. I haven’t rested well myself and am already anxious, as this is a day of many “firsts” for the McCafferty clan. Within the next twenty-four hours my eldest son will take his first plane ride, sleep in a bed other than his own (which he has done only three times in the last seven years), and will hopefully be able to break out of his daily routine enough to learn to like Disney World.
I would be lying to you if I didn’t tell you my fingers, toes, and any extremity possible weren’t crossed on all counts.
I will share with you that I’m also worried about the two-and-a-half hour plane rides (and worried all of us, mother, father, brother and entourage) won’t sleep for one hundred consecutive hours. However, I’m mostly concerned about the new program for guests with disabilities, which I’ve heard is fraught with issues for our community.
From what I understand from representatives at Disney, as well as friends with autistic children who have previously visited the park, in the past children with autism and their families were able to gain access to any ride, any time, as often as desired, through the fast pass lane. Unfortunately, this program has since been discontinued due to widespread abuse. I have heard that some families hired individuals with disabilities to accompany them into the park in order to have access to this program. The actions of those individuals was reprehensible, and my only solace is that they hopefully are no longer able to “fake their way” into any of Disney’s rides or attractions.
Amen to that.
Overall I have to say we found success with the new plan, which required us to attain a Disability Access Service Card (DAS card) at the beginning of our trip, a card which would last for up to fourteen days, and work in any of Disney’s theme parks. We were told we could acquire the pass at Guest Relations prior to entering the park, but the line at 8:45 in the morning was reminiscent of a combination of the post office and the DMV, so we chose to circumvent that option. Instead we entered the Magic Kingdom and went immediately to City Hall, where a cute Frenchman immediately accosted us and asked how he could be of assistance.
I admit, the accent threw me for a bit.
Once I got past the “cute factor” I quickly explained that we had a child with severe autism in our family, and presented Justin for inspection. No medical documents were required (in fact, don’t bother bringing any, Disney won’t look at them due to legal restrictions). I held my breath a bit as I wondered briefly exactly how much training Pierre had in recognizing disabilities in children (no, his name wasn’t Pierre, it’s just my favorite French name, bear with me). Our Disney representative literally looked him up and down with what appeared to be quite a discerning eye, then revealed our fate- we too could be the bearers of a crisp green and white Disability Access Card. Justin was asked to pose for a picture (his disdain for this photo opp was readily apparent on the card), then Pierre filled me in on the details.
So here’s the scoop on the new card, some of which my Frenchman shared with me, and some I picked up from Disney employees at various attractions and during a customer service call. The way it works is that one member of the group physically goes up to the ride attraction (they do not have to have the person with the disability with them), and if there is a wait of twenty minutes or less, their entire entourage is granted access to the fast pass lane, with the caveat that the person with the disability must be in attendance.
If the wait is twenty minutes or greater the Disney employee took our card, wrote the name of the ride on the card, and gave us a time to return. The time we received was ten minutes less than than guests waiting in the “regular line” would have to wait. The card worked for every member of our group of seven, although I’ve been told that a larger group might not receive the same courtesy. Disney employees told us that we had up to an hour after our written time to claim our spot, although the website said “times are valid until redeemed by the DAS customer,” and since we were faithfully within the hour I can’t speak to the legitimacy of the website rule. We also were not able to “load up” on times, we had to wait until our chosen attraction was completed before we could be assigned a new one.
Finally, I was also told by the customer representative on the phone that if this hadn’t worked for our family at this time there were “no unique circumstances,” which conflicts with Disney’s website statement that “Disney… will continue to work individually with guests with disabilities to provide assistance that is responsive to their unique circumstances.”
I have to say that the system did work for our family, in part because Justin was under the weather for the first two days of our trip, and as a result was more compliant than usual. Not having to wait in actual lines was a godsend, as it enabled us to feed the boys snacks or hit the restrooms during what generally were twenty to forty minute waits for rides. Justin’s village (comprised of family, therapists, teachers, and aides) have worked very hard with him over the last eight years or so regarding waiting, and between our diligence and Justin’s own maturation process, we did not have any issues between attractions. My mom also downloaded an app where she could see the wait times for any ride in the park at any given moment, so we chose carefully where to apply our next DAS card assignment, and always had a plan.
Let’s just say we’re an A-type family.
Despite Justin’s illness we had a great time. Although he kept saying his approximation of “home” over and over throughout our time there (there’s no place like home) I feel when he was actually on the rides or watching an event he enjoyed himself, and I’m eager to take him back when he’s well and has already had the lay of the land. I consider our trip a success, and I could end this post here.
Except, I can’t.
I can’t end it here, because that would be doing a disservice to many families with autistic children on various ends of the spectrum, because many of our kids (and adults) simply cannot wait. Can Justin make it a half an hour if he’s not actually waiting in a line and is otherwise amused? Absolutely. Could he potentially even make it through waiting a half hour on an actual line? Yes. We all worked hard for him to attain these skills, and we’ve reaped the rewards. But the fact is I know many families who have worked just as hard if not harder than we have, and have not met with the same success.
The truth is, with Justin, we got lucky.
With these changes to the disability program there will be families for whom the magic of Disney now cannot be attained. There are individuals with autism who cannot watch a member of their party walk up to a ride and not be given immediate access to the attraction. There are autistic people who have followed a “Disney routine” for over a decade, a ritual which brings them comfort, which due to the new program will now be denied to them. Regarding this last sentence, I will go out on a limb here and say that some autistic individuals have as much difficulty breaking routine and waiting as other individuals with disabilities have seeing or hearing. These children and adults are not coddled brats. Many have worked on these skills for years, even decades.
Some simply cannot wait. And now that Disney has altered their program so momentously, for some the dream of Disney will now be denied.
I’m a “fix-it” girl, and those of you who have been following the adventures of the McCafferty clan will not be surprised that I have suggestions for Disney, which I will be imparting to a representative just as soon as I’m no longer on hold. I have two ideas which might conform to Disney standards. First, for families who believe they won’t be enjoying any given park for more than three to four hours, create a program which allows families access to the fast pass lane for that short period of time. Second, issue the DAS card, but enable families to also choose a handful of rides each day where they can simply walk into the fast pass lane at any given time, in any given order. This may enable a certain autistic individual to adhere more strongly to a prior routine, or allow families to choose the rides with the traditionally longest lines throughout the park. Either program gives the families the power to tailor their experience to their child’s needs, which at the end of the day, is what living successfully with autism is all about.
There will be people reading this post both within and without the autism community who will think it’s ridiculous to be this fired up about a vacation, particularly when there are so many more pressing problems in the autism world to be addressed. And yes, we still need tremendous reform when it comes to insurance issues, Early Intervention, education, housing, and employment, just to name a few. I concur with anyone who feels these issues should garner our focus and take priority.
But I will finish this post by saying this. Sometimes, autism is not a lot of fun. Many families are struggling on a daily basis with sleep deprivation, eating disorders, medical issues, and behavioral problems, just to scratch the surface. Disney has traditionally been a place where magic abounds, a “respite from life,” a place where dreams come true for many special needs families, even if it’s for a few days or just a few hours.
So my plea to the Disney Corporation is this. Please consider making accommodations for those in our community for whom the DAS card simply will not suffice. Create a system or two that will work with every person on the spectrum’s incredibly individualized needs. Tailor accommodations to each person whenever possible. Listen when we call you and write to you for help. Please, work with us on this, and not because, as some have suggested, we feel we’re entitled to it.
Work with us simply because every family deserves some fun.
App for Disney which enables you to find out wait times for rides: WDWlines.com
November 1, 2013
It’s done! Five days ago I pushed the “I accept” button on Amazon’s self-publishing program, Create Space, and yesterday my memoir, Raising Autism: Surviving the Early Years became available to the public.
Yes, there is (at least) one very large glass of wine in my immediate future.
I’ve written about the book before, so I won’t go into lengthy detail again, but I have to admit to all of you it’s a huge moment for me, plus a relief to have it finished. I started it seven years ago when I shipped my first child off to full day school, wrote about a third of it when I was pregnant with the second one, then hurried to finish it just in case our last child would ultimately be diagnosed with autism as well. The “just in case” came true, and I put the book on hold to once again work with one of my kids, and finally had time this year to see it published.
As I mentioned before in my first piece, all the profits will be split between four autism organizations- namely Autism Speaks, Parents of Autistic Children (POAC), Someone Special Needs You (SSNY), and my son’s school. I’m hoping I get to write some big fat checks to these worthy organizations who have all played such a big part in Justin’s and Zach’s progress and happiness, and by extension, our family’s.
Please consider purchasing it (it’s available on Amazon, the CreateSpace eStore, and will be available on Kindle in about three weeks) and/or spreading the word to anyone you think might be interested in reading it. I promise my sense of humor comes through, and I pinky swear it’s not a “weeper”. Simply writing our story was incredibly cathartic for me- my deepest wish is that it will help those of you in the autism community as well.
Below is a brief excerpt from “Raising Autism”, a review, and links to where you can purchase the book. As always, a huge thank-you to my readers for their continued support, it means the world to me!
Excerpt from Raising Autism:
“Raising Autism” is the story of how my eldest son and I survived his early years without dissolving entirely the fragile and tenuous bond we had crafted with one another since birth. It is the story of how his father and I made every difficult decision, from choosing his schools, his therapies, and even to where we would ultimately come to reside, while constantly agonizing over whether we had made the right, and often irrevocable, choices. It explains how his diagnosis called into question everything I thought I knew about myself and motherhood, and challenged me to consider exactly what I was willing to surrender for my child- career, geography, friends, and perhaps my known self. This hard-won knowledge would sustain me through not just my firstborn’s diagnosis, but ultimately through my second child’s as well.
Over time I have learned to embrace the altered landscape of our dreams, to measure the depth of my love for my sons, and most importantly, to reconcile with their diagnosis and move on with my life. I’ve named this book Raising Autism for several reasons. In part the title harkens to the often Herculean task of simply getting through the day while encountering the myriad of challenges autism presented to our family. I also called it Raising Autism as celebration for those parents able to conjure a different concept of family, of what it means to love, respect, and take pride in their child while simultaneously rewriting a new version of the rest of their lives as well.
This is our story.
Review for Raising Autism:
“It is a thing of beauty that McCafferty constantly finds some way to draw poetry out of her daily experiences, dealing with her sons’ autism…She expresses herself with a fine mix of candid humor, wit and grace… Her unique parental insights and perspectives make “Raising Autism” an excellent piece of literature for thousands of parents out there who are experiencing autism’s double-edged sword of confusion and wonder for the very first time…”
- Vanessa Ira, Managing Editor, Exceptional Parent Magazine
Link to CreateSpace eStore: https://www.createspace.com/4264622
October 28, 2013
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
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
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
“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.