January 23, 2017
I am overwhelmed.
I know, I usually write fairly positive missives about our family’s life with autism, but right now, at this moment, as I’m thankful I’m not outside on this blustery Monday morning, I am overwhelmed.
I am overwhelmed at the enormity of decisions that will be made this year and the impact they could have on my severely autistic son’s life.
I won’t make this a long political rant- there are other bloggers who can do this much better, and I know my readers are informed, so I’m preaching to the choir.
But there’s this- Endrew F. v. Douglas County School District RE-1, where the Supreme Court will probably be ruling this spring or summer as to what the “A” (appropriate) in FAPE means, i.e. whether or not special needs children deserve the right through IDEA to services which provide “some” educational benefit, or something more meaningful.
And there’s this- Betsy Devos’s terrifying unfamiliarity with IDEA as a federal law. Good Lord.
And there’s also this- the devastating rules and regulations proposed by the NJ State Board of Education and the NJ Department of Education which, if imposed, could close many of our state’s much needed private schools for children with disabilities.
Including my son’s.
And last, just for fun, I’m worried about Medicare and Medicaid too. Why not throw one more thing in the mix?
I will tell all of you straight up that I never take IDEA, the continued existence of my son’s school, his district’s decision to place him there, or his ability to behaviorally keep his placement for granted. I’ve written posts where I’ve thanked disability parents “of yore” for the creation of IDEA. I’ve written posts to the founding families who brought my son’s school to life through their hard work and dedication. I’ve thanked my son’s school personnel for being so on top of any rule or regulation that might compromise their ability to stay open. And I am grateful, eternally grateful, that through behavioral strategies, medication, my son’s teachers’ expertise, and hell, love and luck, my boy is able to thrive in the placement that has become his second home.
I am gratitude attitude personified.
I know twenty-one and beyond brings its own landscape of troubles. There is not a day that goes by that I don’t hope desperately that my beautiful boy will find an appropriate day program that he loves, activities he adores that will grow with him into adulthood, and most importantly, when it’s time, a residence where he’ll be happy, and safe. I know I will most likely struggle and fight to have these dreams come to pass. I know it won’t be easy.
But I no longer feel relatively safe in our little pre-twenty-one cocoon. There have been days in the last few weeks where I longingly envision signing that last damn IEP, knowing at that point my son will get to stay in the place that he loves until he reaches drinking age. There are days that I long to know I’ve done it. To know that his school’s done it. To know that his sending district’s done it. To know that IDEA’s done it.
To know that he’s done it.
I’m already planning on having a post-signing party. There will be wine and dancing. And chocolate.
Despite being overwhelmed, I want to leave you all with the opportunity to do something if you so choose. Last week Diary of a Mom wrote a wonderful post about Betsy Devos and listed all the Senators on the Senate HELP Committee and their phone numbers (the ones who heard testimony from her). If you are so inclined to call, here is the link:
If you are interested in writing a letter to the NJ State Board of Education or the NJ Department of Education here is the link to my blog with a sample letter and addresses:
Please, do what you can to help. And as always, thank you for reading!
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December 7, 2011
It’s the Monday after Thanksgiving, or the day I lovingly refer to as “Deliverance”, as my children have been in school approximately five minutes over the past three weeks. It’s not that I don’t love being with the little devils, but there is only so much one can do with the moderately autistic child who only likes three things, particularly in November in New Jersey. I knew I’d hit my wall this past Sunday afternoon when Justin even began rejecting computer time, and I looked at the clock thinking it was approaching 3:00, and we hadn’t even hit 1:30 yet. When that 30 Rock movie theater scene with Tina Fey and Dean Winters floated through my mind for the sixteenth time (you know, the one where they’re watching The Hours and both comment simultaneously it should be called The Weeks), I knew vacation needed to end soon.
And this morning, gloriously, it did. God bless IDEA.
I really shouldn’t be complaining, as things have been relatively calm this month, and we’ve endured entire years here where a tooth extraction sans Novocaine seemed preferable to even one more minute in this house. Everyone was fairly mature (including the boys’ parents), and the kids got along extremely well. Even though Justin had an off day on Thanksgiving (he made it seven minutes at the dinner table before I had to follow him for “surveillance”, but on the bright side, there was no time to overeat), I’d say the interlude was a success. We’ve got (in theory) four straight weeks of blessed school coming up, most of our fall doctor visits, IEPs, and conferences concluded, so it’s time to relax a bit.
You know, except for that little “Christmas thing” coming up.
So I hope you’ll indulge me for a moment if I brag a bit about something I learned in one of those recent school conferences, a little tidbit about Justin which was shared with me by his lovely teacher. After we settled into our seats and I congratulated myself on remembering to bring the “conference muffins”, we began to discuss his academics. Despite moderate autism, Justin’s reading almost on grade level, spells like a champ, and as for math, we’ll just say he takes after his mother. We then moved on to behaviors, where he continues to excel, which makes me just as proud as his academic progress. Finally, his teacher shared with me a little anecdote that sort of says it all about Justin, which is not easy to do.
One of the most challenging aspects of teaching my eldest has always been how quickly his reinforcers lose their appeal. Although the staff at Justin’s school is very savvy as to what the “flavor of the day” is, it seems that one day a few weeks ago Justin became quite agitated while waiting for his reward, one his aide was unable to identify. Given that he’s not at leisure to roam around the room whenever the mood strikes him, she encouraged him to ask for what he wanted on his iPad, even prompting him to try to spell it. He called up the keyboard, but was stymied. She then said he smiled, searched through pages so rapidly she had no idea how he’d gotten there, and found the icon that most represented what he desired. It was a chicken, one which when he pressed it, obligingly said “cluck”. He then stood up at his seat and pointed halfway across the room at a timepiece that apparently had caught his eye.
My kid wanted to play with their fancy-schmancy clock, and that’s how he figured out how to get his needs met.
The two of us spent a few minutes reveling in just how clever that really was, particularly since his mother spends quite a good portion of her own day engrossed in word retrieval, and is not nearly as successful as her son. I’m not sure what aspect of this pleased me more; that my son used his intelligence rather than a behavior to achieve his prize, or the look of incredible pride on his teacher’s face when she recounted the story to me.
Luckily, I don’t have to choose.
I hope you both survived and enjoyed your long week-ends also, and are able to dig in to a few consecutive weeks of relative calm in your respective abodes. With winter break looming (perhaps it won’t snow up to my collar bones this year, a girl can dream), I’ve got a few things to accomplish before school concludes once more, as I’m sure do all of you as well. Here’s wishing for a healthy, snow-free December.
And here’s hoping we all manage to get our needs met too.
September 12, 2011
Last week, for four consecutive days, for a brilliant three hours at a time, I “rediscovered” my life again. Gone was my youngest, who spent the last hundred or so hours of the summer complaining he was bored. This was despite having access to a pool, the beach, three amusement parks, and what amounted to approximately a gazillion playdates, whose scheduling alone made me question my sanity. Vacated was my eldest, who has yet to completely recover post-Irene, as evidenced by some seriously ramped-up OCD, and equally questionable sleeping habits. During that time I attacked piles of crap I’d ignored since Father’s Day, ran a ridiculous amount of errands sans child, and remembered to shave my legs. Even with my husband just down the hallway hard at work, the house was comparatively silent, devoid of the whirlwind of noise that signifies the presence of both of my sons.
School, glorious school.
Every year I send a silent message of thanks to the universe at large for the creation of IDEA, that fabulous law that enables my offspring to have an education, and gives me the opportunity to once again breathe. I can’t thank the parents who spearheaded its creation enough, and can’t imagine having to convince legislators that my children were indeed entitled to attend school despite the differences in their brains from the “typical” crowd. I am well aware that all school systems are still not created equal. I am also aware that many of my fellow parents with differently-abled children are yet engaged in a tug-of-war with their respective districts, desperately attempting to convince administrators and teachers how best to meet the needs of their children. We still have a long way to go until it’s perfect. In some cases, we still have a long way to go before it’s even adequate. But at least, thankfully, education is an option.
For my two boys, for which I am eternally grateful, it’s become a fabulous option indeed.
I have to admit the McCaffertys cheated the gods of first week of school jitters this year, as my eldest not only had the same teacher and classmates, but enjoyed the return of the same phenomenal bus drivers. My youngest just commenced his third year of school with his cherished teacher and dedicated aides, and although his class composition has been altered (a fact which kept him up three straight nights in June) to allow a few of his friends to move on to kindergarten, a sampling of the “oldies but goodies” remained behind. He’s already made a new best friend, a lovely young girl with whom he plans on being betrothed and producing his future five, and I’m keeping my fingers crossed that she’s amenable.
So much for that return trip to Paris someday. Time for an addition.
The truth is my semi-return to sanity would not be possible without the expertise of both the faculties involved, from assistants and teachers to principals, and occupational and speech therapists as well. From the frequent notes replete with great detail about their days to the exceedingly well-executed field trips and schoolwide programs, both my boys are cared for, challenged, and excited by the prospect of learning. My sons are constantly treated with dignity and respect, and valued for the unique qualities of their personalities that comprise the core of who they are.
Frankly, that last sentence is half the battle already won.
So today I’d just like to say thanks to the entire world (we’re so beyond a village) helping to inspire my sons, both for a great first week of school, and what I’m certain will be a fantastic year to come. This family quite literally couldn’t do it without you, and the glorious smiles beaming from the faces of my boys every day they return home to me are evidence of just how hard you work for them, trying to elicit their best. My sons are appreciative. I am grateful. The reduced piles in my house are ecstatic.
And once again, truly, thank you.
May 25, 2011
I’ve mentioned this before in my writing- when it comes to my children’s education, I have two very fortunate offspring. My youngest is thriving in his local public school, entertaining himself almost weekly with fossil digs, and “bear hunts”. Most recently, his joy was compounded by singing exuberantly in a choir of a hundred pre-school children (how a music teacher can convince that many three-to-five-year-olds not only to mimic her hand movements but learn (most) of the songs’ lyrics as well, is beyond my comprehension). He loves his friends, the paras, his teacher (trust me, many of his sentences at home begin with “but Miss Liz says”), and is almost as eager to see that school bus arrive each morning as his mother is. In ABA terms, school, for Zach, is a primary reinforcer.
And then, there’s Justin.
My eldest child has always adored learning, easily surpassing my computer skills by the age of two (I know, that’s not saying much), and often flinging books at me over the years to read to him until I taught him to hand them to me (it’s tough to read the work of Eric Carle with double vision). That early love of literature has fortunately flourished into his own ability to read, a skill he possesses for which I am eternally grateful. He’s not big on math (neither was his mother), but I’m certain he would have been a killer contestant in a spelling bee. He’s formed a friendship with one of the students in his class who has technically adopted Justin as his little brother, and I’m told he now moves rather easily from task to task, location to location, with little angst.
And trust me, I’m grateful for that too.
Ms. Hillary Clinton once stated that it takes a village to raise a child, and I can assure you it takes an entire planet to raise one with autism. His progress to this point has been a culmination of the efforts of his teachers from his last two placements, as well as his current one. Justin has benefited from dedicated staff at all five of the schools he’s attended up to this point, educational facilities spanning two different states. His father and I are thankful for the compassion and caring he’s received from all of his centers of learning.
I simply must say however that his current school is different, and I was reminded just how special it is when I learned about its history this past weekend at the Search Day Annual Dinner Dance, where we celebrated the school’s fortieth anniversary.
The Search Day Program is unique in part because it was the very first twelve month specialized school for autism, the brain child of a very dedicated group of parents in the sixties who recognized a need for a different type of learning environment for their children, and stopped at nothing to achieve it. Some of these early founders went on to establish Autism New Jersey (formerly known as COSAC), a state organization which provides support and advocacy for parents of children with autism. I’m a proponent of putting things into context, and I can assure you that what these parents achieved in that time period, while IDEA was in its nascent stages, prior to the internet, and before any widespread knowledge of autism (or compassion for those who have it), is nothing short of miraculous. I’m forever indebted to their advocacy and determination, and I’d just like to thank these pioneers for providing a venue that has helped so many children, and their families, reach their full potential.
Due to the collective efforts of various teachers, parents, and corporate sponsors such as Home Depot, TD Bank, Foodtown and Wegman’s, Search Day has expanded from classrooms situated in the rented space of a church basement, to the excellent facilities it is comprised of today. Search’s campus now includes three buildings and thirteen acres of land, on which the various school programs, a Career and Life Center, and a Campus Store, are located. Through the efforts of those who helped raise funds for various projects a new playground has been constructed and a swimming pool installed, the latter in which I’m hoping my eldest will learn to paddle just long enough to save his life if necessary.
And while it also takes an entire planet to create a school of such caliber dedicated specifically to the advancement of those with autism, none of it would take place without the dedication of a brilliant, and highly motivated staff.
On a recent Friday night, after indulging happily in our two free drinks and cornering the market on the plentiful mini-quiches and pigs-in-a-blanket floating around the room, Jeff and I joined the other hundred-plus parents, educators, and sponsors who attended the gala at the English Manor in Wanamassa, in the large and beautifully furnished dining room where I was happy to be served a fine meal I neither had to cook nor clean up. We listened to a passionate and rousing speech by the school’s director, Kathy Solana, who almost made it to the end without crying. Jeff and I couldn’t help but revel in the rousing cheers, particularly from the teachers, for every single child featured in the moving slide show presentation (the one of our son seated next to Santa with a “why the hell am I doing this look” was particularly priceless).
The truth is, I could ramble on about the obvious commitment of the staff, some of whom have worked there for decades. I could describe the overwhelming compassion for not only the children, but for their parents as well, as evidenced in every conversation I had with Justin’s teacher, his aides, and his speech instructors that night. I could share with you that I wondered when these people ever sleep, that their sheer willingness to go above and beyond for their students on a day-to-day basis is what renders this school unique.
But the real reason this school is special is simply due to the staff’s palpable joy in working there.
I was an educator (well, will always be an educator), for thirteen years, starting as an aide at a school for emotionally challenged children in New Jersey, and eventually ending up at a magnet school in a public school district in northern Virginia. I’ve been fortunate during the span of my career to know phenomenal teachers, true visionaries in their fields. Some of them, to my never-ending gratitude, have worked with my children. Truly, I’m no stranger to amazing educators, whom we in the field often refer to as “lifers”.
I must admit however, that I have rarely encountered a school where every single faculty member I’ve met has resided in this exclusive club.
As Jeff and I eventually left the gala, total losers in the raffle and the 50/50 but happy to have gotten out of the house, the director took ten minutes of her time to escort us to the door and chat with us about Justin’s progress, and her vision for the school’s future. I admit I was a bit teary as we exited the premises (with my ramped-up crying these days I think Jeff’s worried I’ll be going through the “change” soon, and is concerned his prospects for a happy future are rapidly diminishing), but I pulled it together enough to convey to my husband how fortunate we were to have landed on this particular square, in the lifetime chess game of autism. The truth is, I may not ever be able to give my boy actual words, or the intimacy of a lifelong friend. I won’t dance with him at his wedding, or watch him drive off into the sunset with his lifetime love. He won’t make me insane with his incessant and unreasonable demands as a teenager (maybe that’s not such a bad thing after all).
But with a lot of hard work and the support of his incomparable grandma, his father and I were able to give him this school, this education, this pathway to progress, and that is no small thing. To the staff and supporters of Search Day School, and Justin’s home district who made it possible for him to attend, we would just like to say we are so deeply appreciative.
May 14, 2010
My son will soon turn seven. He will be one-third of the way through his childhood thanks to IDEA, a federal mandate which enables Justin to be educated in the public schools until his twenty-first birthday. It is difficult for me to believe, as we conduct the multiple celebrations which herald any birthday in the McCafferty household, that technically one-third of my parenting him as a child has passed. It feels like just yesterday I carried him, painfully post C-section, up the unforgiving brick stairs to our humble Virginia abode, where I recall I stepped over the threshold and immediately wished he had a manual to accompany him. One third over and done, no returning to rectify past mistakes, only moving onward to further challenges, and successes. It’s been both endless, and the blink of an eye these past seven years, to be his mother.
During his early years I felt my life was conscripted into thirds as well. One third of my existence was devoted to child care, that endless round of meals, laundry, cleaning, and removal of bodily fluids that accompanies the raising of any child, disabled or not. The second third of my time I spent in research, endlessly analyzing yet another website, article or book with helpful hints to alleviate the more dramatic symptoms of the manifestations of my son’s autism, namely his inability to speak, his giftedness at spinning, and his seemingly permanent stomach afflictions. The last third of my time I endeavored to spend conducting therapy with Justin, six hours a day, most days of the week, trying relentlessly to solicit the slightest reproduction of sound, encourage the tiniest attempt at imitation, or entice the briefest moment of happiness. His happiness, not mine.
For months after his diagnosis I banished happiness, at least the pursuit of my own. It somehow seemed wrong to covet it, those halcyon days prior to the knowledge there was indeed, something incontrovertibly, irrevocably, wrong with my miracle baby. It wasn’t that I felt guilty he was autistic. Short of ingesting crack cocaine while I was hosting him, nobody could ever make me feel guilty for passing on a genetic disorder, with or without the possibility of environmental triggers.
No, my need to preclude happiness from my own life stemmed from the fact that my child suffered, day in, day out, with gastroenterological symptoms, frustration at his inability to communicate, and the onslaught of sensory overload that assailed him constantly, every second of his conscious moments. Quite honestly, my moratorium on euphoria wasn’t just that he was my son, I loved him, and he was in pain, either. I suppose I felt his suffering more strongly because he reminded me of myself as a child, with his love of books, sand and surf, and when his parents allowed it, chocolate. He was my best self, with the addition of autism. Underneath the many layers of discontent was a child who yearned for constant affection, and a deep connection to those he trusted. He, like me prior to turning thirty, desired to please those he loved. He wanted to be a good boy. And those qualities we shared, in addition to our own inviolable connection, made what had happened to him so much more painful for me to deal with, to understand, and to accept.
I didn’t think it was fair, back when I still believed in the concept of fair, that I should allow myself to mentally escape for one minute from what he was forever immersed in within his world. But as the months wore on after his diagnosis and we approached his second birthday, my embargo on pleasure began to wear thin. As May barreled nearer and nearer to us, I wondered how his father and I could ever enjoy the event, much less celebrate it with friends and family when I personally was still in mourning. I finally realized I’d better take a day off from grief, or I would go crazy. Jeff’s and my birthdays had passed in a blur, I couldn’t even remember how we had commemorated them, and they had just recently concluded. I reminded myself this was Justin’s day (or rather, his month, as that’s how long birthdays are experienced in our family), and he shouldn’t be gypped because his parents were still reeling.
And so, within the confines of childcare, research, and therapy I permitted myself the possibility of happiness, even if only in preparation for one day. I went a little overboard on party planning (Elmo cake, cupcakes, and party favors galore, and I would have forced Jeff to dress up as the red furry friend if a costume existed for a 6’4” Elmo.) Slowly, over the course of a few weeks, my life expanded into quarters, with the added promise of diversion from grief and drudgery, repetition and questioning becoming a permanent staple in my repertoire.
I have read numerous essays by parents who lament their disabled childrens’ birthdays, and I understand completely what lies behind the sadness. Those days are supposed to be a celebration of milestones achieved and surpassed, joy and discovery, love recognized and rewarded. Often, at least when autism is a party guest, there is only agita, fear, and the cleaving away of the last vestiges of “normal” that every family hopes for at least one day of the year. Sometimes, despite the best preparation, these holidays are just painful reminders of what should have been, and perhaps what will never be.
I have decided however, that no matter what is transpiring in our everyday lives, whether it’s potty training issues, sleeplessness (Justin’s or mine), or simply the myriad annoyances of having an autistic child, that this one day – the day I, his father, and nine months of highly skilled ob/gyns and fertility doctors, brought him into the world – will be sacred. We will celebrate, and we will celebrate well. I now make time every spring to recall past birthdays, to note his accomplishments, to appreciate his own passage to happy. I remember how he mastered his first sign, “music”, and used it to persuade his parents to replay his favorite Wiggles tune over, and over, and over again at his second birthday fete. I recall how on his third he finally overcame his squeamishness and dove both hands into a corner of his Winnie-the-Pooh cake, gleefully freeing fistfuls of chocolate and butter cream in his triumph. In my mind’s eye I particularly revisit his fifth celebration, for as we came home from our mid-day outing he recognized the streamers and decorations as a portent of what was to come, and I realized he finally understood, at least in part, that this was a day about him.
I welcome his birthday now, as a reminder to enjoy him for who he is, not to dwell in who he could have been, and what my life would have been without autism firmly entrenched into my family’s existence. I strive constantly for more days like this, where my life is not constricted by fractions, where happiness permeates all the disparate denominators of my days.
I also know, on this birthday as in all birthdays past, when those who love him gather to make our collective wish for his well-being and extinguish the flames of seven dripping candles, my boy will reach for my hand as we sing his song to him. And that, to me, is happiness.
April 16, 2010
April 2nd was World Autism Day (I know, my two autistic kids were home on spring break and I didn’t post to the blog, yet I was still completely aware of autism, trust me), and I’d just like to take a few minutes to draw our collective attention to a few groups of people who seem to get left out when it comes to recognition and appreciation. There is always a great deal of focus on the filmmakers, writers, celebrities, and parents who promote the cause, and all of that is of course, positive. Even though there are so many controversies surrounding the disorder, when it comes to autism, any news is good news in my opinion, as it continues to draw attention to the plight of autistic children and adults.
There are plenty of other factions however, the unsung heroes if you will, who have made and continue to make my sons’ lives, and the lives of thousands of other people with autism, easier and more fulfilling every day. There are the individuals who fought relentlessly for IDEA, the law which entitles my son to an appropriate education, in a time period when autism awareness was in its nascent stages. There are the parents and legislators, right here in my home state, who worked so diligently to pass a bill which will force insurance companies to shoulder a portion of autistic childrens’ therapeutic burden this year, for the very first time (although only a portion of the population is eligible to receive compensation, which does not include us.)
There are the teachers, aides, specialists, and directors of special education who tirelessly strive to accommodate the varying and disparate needs of all of their students on the spectrum, a Herculean task at best given today’s current educational climate. There are the many various national and local non-profit organizations that raise awareness and funding with which they aim to improve the lives of families impacted by autism. And finally, there is my favorite group, those scientists delving daily into the secrets of the psyche, teasing out the combinations of genes that create a susceptibility to autism, and the possible environmental triggers that perhaps make development of the disorder an inevitability.
I know, it’s not Autism Gratitude Month, but I am aware of the gifts these groups have made to our community, and many other people who deal directly with the effects of autism in their lives are aware as well. Sometimes we parents of autistic children are just a wee bit too busy to take the time to ruminate (or breathe, for that matter), and I just want it on record that I acknowledge, and thank, the thousands of individuals whose collective contribution has enhanced the quality of life for so many of our children, and our adult children as well.
Thank you, and let’s extend this attention shamelessly like I do my birthdays, and call this Autism Awareness Decade. It’s worked for me.