March 2, 2015
Never Give Up
A few weeks ago I posted a piece called “Love Letter to my Autistic Son for When I’m Gone” on the Autism Speaks website. It clearly resonated with many people, and I read every single comment on their website and Facebook page, and responded to as many as I could. The comments were both lovely, and in some instances, heartbreaking.
Many recounted their fears of what their son’s or daughter’s life would be like when they were elderly, and they themselves had passed away. One comment I read in the myriad places I posted the piece stuck out to me in particular the day the piece went “viral.” In it, the reader blessed me. Then she intimated that perhaps my son’s fate would differ from what I imagined it would be, that perhaps one day he would become more independent than I thought, which to my mind equated to “don’t give up.” I let her words roll around in my brain for a while as I tried to construct a response. Eventually, I quit.
The truth is my son is almost twelve years old. He has two words he uses independently, namely “popcorn” and “mama,” and sometimes to acquire those things he uses means other than words. He still needs help with toileting, and minimal assistance with dressing and grooming. He is one of the lights of my life, but he yet requires the almost constant supervision he needed as an infant and toddler.
One day when his father and I are gone, unless he lives with his brother, he will be in the care of people not yet born. He will never live independently.
And to me, accepting this does not mean giving up.
Eleven years ago when he was first diagnosed with autism, I completely wanted an independent outcome for him. At the time I lived in a state that only offered us eight hours of Early Intervention a month rather than the one hundred and twenty studies showed he needed if we were to attain the holy grail of independence. For almost a year-and-a-half we labored together, me and my small son, as I desperately attempted to elicit sounds from my seventeen-month-old, then two-year-old, then child approaching three. I still read those “What to Expect” books and religiously studied their milestones, often feeling despair at how much he’d fallen behind.
I don’t remember when I finally realized he wouldn’t be one of those kids who shed his diagnosis or moved to the milder end of the spectrum. It was more of a gentle dawning for me, a realization that marriage, college, and independent living were not in the cards for my eldest boy. I know I grieved for those choices he would never have, but even then I acknowledged that these were life choices I had needed to be happy. My boy didn’t. This realization helped me shelved my grief and move on to accepting his probable life trajectory- school until he turned twenty-one, hopefully some sort of meaningful employment, and a life spent living with constant support.
And I realized that shedding these more “typical” dreams is not giving up. Instead, I’m being realistic about my son’s future, and planning for it in the best way possible.
I understand what the woman in the comment probably meant. I don’t know exactly what the future holds for my child- none of us does. But the best gift I can give to him is to value him for what he can do, and plan to put the appropriate supports in place as best I can. I will always regret that I won’t be here to see him draw his last breath. In my fantasy world I live to be one hundred and twenty, and Justin passes at eighty-four, with me holding his hand as he is ushered into the great unknown.
It’s good to have goals.
Control freak that I am, I can’t make that happen. But what I can do is accept what lies before him, and try to construct for him the best life possible. A life where he remains the joyful, ebullient soul that he is. A life where he is productive, and safe. A life where he is loved the way he deserves.
A life that never means giving up.
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February 24, 2015
A Great IEP Meeting
Last week I had a wonderful IEP meeting. I’m sure that some of you who are reading this may now be on your way to consume large amounts of chocolate (or something much stronger) as you envision you own child’s IEP meetings.
If it helps at all, I’ve been there too.
But recently I got the chance to sit down with Zach’s teachers (both classroom and special education,) his speech therapist, and his case manager to get the low-down on how my son’s doing in school. Academics were discussed (he is on or above grade level in everything- the fact that so far he hasn’t struggled academically is something I’m grateful for every day.)
He’s made strides socially and behaviorally, although these are areas we will continue to work on collectively. And finally, he’s happy, which for me is one of the most important things anyone can tell me in a child study team meeting. The overall assessment was that for the third year in a row Zach is doing beautifully in an inclusion setting, with a half day of support from a special education teacher when he needs it.
But the most important thing I took away from this meeting, something I’ve known since September, is that the staff who care for him truly like and “get” my boy.
There were tales told, like how my child wrote a letter of protest to the principal about how outdoor recess should be reinstated even when it’s -92 degrees, for which he was allowed to petition the principal personally. There was an unrelated missive that landed on his teacher’s desk regarding seat changes in which the word “injustice” was used (the team thinks he’d make a good lawyer.) There was discussion about how he tried to use conflict resolution tactics with classmates even when the dispute was none of his business (we’ll have to work on that one.)
But what really struck me from the meeting was how much the professionals in Zach’s life don’t just permit his unique world views to be expressed- they foster them. These women truly enjoy my son.
And he knows it.
I told Zach he was autistic when he was six year old. I waited until he asked, which one night eventually he did. I had hoped my husband would be there for “the talk,” but he wasn’t, so we forged ahead together. I told him how autism had given him the ability read at an early age, and was probably why he was so good at building things. We discussed how his autism made him unique and special, and was a reason for him to be proud of himself. I asked him if he had any questions.
He smiled, then hugged me and asked for pretzels.
And that’s the key for Zach, or for any child. They all need their unique and wonderful traits to be recognized, encouraged, and praised. Fortunately Zach has found such a haven for five straight years now, and in large part because of it, he is thriving.
There are not words to express how grateful I am.
All I can say is thank you.
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February 16, 2015
Nine Ways to Help Someone Whose Child Has Been Diagnosed with Autism
A little over ten years ago our eldest son was diagnosed with moderate to severe autism, and my world (and my husband’s) changed irrevocably. We were what I like to call “mature parents” when we had Justin, convinced we were ahead of the curve because we’d watched so many of our friends parent before us.
We were so wrong.
Autism completely through us for a loop, and even though we’d had suspicions that something was different about ours son’s neurology for almost a year prior to his diagnosis, it still hit us hard. We wondered if he’d ever talk (he’s started to.) We wondered if we’d ever sleep again (he does and we do!) We wondered if we could afford this (that’s still a work in progress.) In our few frivolous moments we wondered if we’d ever have a social life again.
We do. Sort of.
When I look a decade back I realize that my husband Jeff and I did a lot of things right, but the one thing we got completely wrong was acting like we were handling everything while initially we were completely falling apart.
Autism thankfully is not life-ending, but at least for us it was “way-of-life” ending. Our world completely changed from playdates to therapy, from trips to Starbucks to doctor appointments. We needed help.
And we didn’t really ask for it.
I recently had a friend ask me what she could do for a friend whose son was recently diagnosed, and so I told her the things I wished I’d asked a decade ago. I hope these suggestions are helpful for anyone wanting to come to the aid of a family member or friend whose child just received an ASD diagnosis.
1) Ask your friend what she needs. Even if she says “nothing,” keep asking. She may be so overwhelmed she might need some time to figure out what you can actually do for her.
2) If you think you can handle it, offer to babysit. Your friend will still need to get a mammogram even though her child has autism. Offer to cover for her.
3) One of the toughest things I had to accept about autism at least in the early days was that everything I thought we’d do for fun was work. Offer to go to the park or some other outing just to act as a pair of extra hands. It’s a relief to know someone else is there to help.
4) Just listen to your friend, don’t give advice. You know even less than she does about autism. Let her vent.
5) This is a big one- offer to go to appointments with her and act as her scribe. Many times there’s months of waiting for an appointment with a developmental pediatrician or other autism professional, and parents want to make the most of these visits. This is hard to do if they are chasing down their child. Ask if you can go with her and either help out with the child or take notes for her.
6) The days after a diagnosis can seem very bleak for some families. Ask if she’d prefer you tell mutual friends for her. It’s one less thing for her to do or worry about.
7) If you’re a family member or friend who can help out financially, offer to do so, then offer again. Autism can be really, really expensive. Every little bit helps.
8) This may be the most important one- take your friend out for dinner, or a movie, or treat her to a massage, anything that gets her out of the house. She’ll need a break (well, many.)
9) Last but not least, I said it in number one- keep offering help, keep offering help, keep offering help.
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February 9, 2015
Brick SEPTA Meeting
This December I had the opportunity to attend the Brick Special Education PTA’s 10th anniversary “Meet and Greet.” It is an event which included various organizations devoted to helping those with special needs, a visit from Mayor Ducey, and a strong turn-out from parents, teachers, and administrators alike.
It also holds multiple raffles just for attending, and I win something cool every year (and trust me, I never win anything.)
I’m writing today about SEPTA in part to praise its president, Brenda Calderone (and the board too,) for putting together such a wonderful evening. I’m also writing about it to urge all parents of special needs students, whether they have a full-fledged IEP or just a 504, to get involved in the organization.
I began attending meetings in 2006 when SEPTA was just two years old, and my eldest son with severe autism was only three. I remember feeling so generally overwhelmed at the time, as we had just moved to Jersey from Washington, DC a few months earlier, and I had yet to really connect with any other parents. I recall knowing I’d found a safe haven when after the first meeting I attended Mary Tara Wurmser, SEPTA’s past president, came up to me afterwards with a welcome and an offer to help if I needed anything.
Since then I’ve met many helpful people through SEPTA, and those connections have been invaluable in helping both of my autistic sons.
SEPTA runs several fabulous events, including an annual Easter Egg Hunt, and Halloween Fest which my boys particularly love. While these events are wonderful, the best part of SEPTA is the opportunity to feel a part of a community, to know that help is not far away. I strongly encourage any parents of special needs children in Brick to consider joining (the membership fee is only $6.50 per person, a steal) and also consider attending their next meeting, which will be held on 2/24 at 7:00 PM at Civic Plaza, 270 Chambers Bridge Road (right corner of the strip mall.)
I hope to see all of you there, and thanks!
SEPTA Facebook page: Brick Township Special Education PTA (SEPTA)
For more on my family visit my blog at autismmommytherapist.wordpress.com/
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February 2, 2015
Brotherly Love
The sound sleep hums its siren song, waves crashing in a cadence and rhythm I hope will put my youngest son to sleep. Zach slides into his bed, and asks me to sing him “his song.” In my hackneyed way I comply, ending with his favorite verse, the one where Mommy, Daddy and Justin love him best. He is momentarily silent, and I adjust his blankets to more tightly cocoon him. He rolls over, looks up at me and asks “How do you know Justin loves me- he doesn’t say it.”
My heart clutches. I want to say “baby, I know he does with my mother’s heart, I know.” But he is almost eight now, requires facts to back up most of my declarations (particularly the ones surrounding the efficacy of homework.) He will want proof.
And I have it in spades.
I tell him I’ll spin him a tale of brotherly love. A tale of how almost every time he cried as a baby his big brother would bring me the toy baby’s bottle to cease his distress. I’ll tell him how Justin loved to sit in Zach’s crib with him, would at times briefly hold his hand and squeeze it tightly. I’ll share with him that he is the only child whom Justin has ever let share his toys without protest. I’ll recall for him how my eldest son, who allows only an elite few into his inner circle of touch, welcomes my youngest son’s embraces. Sometimes, he even hugs him back. I’ll tell him that after a long absence Justin’s face lights up when Zach enters a room.
I’ll explain to him that love doesn’t always require words.
He rolls over again with an “okay mom,” settles into the niche he’s created in his bed. I smile as I quietly leave the room, comforted that I can give him this. There is so much uncertainty in our world, but this I know for sure.
My eldest son loves his younger brother.
He doesn’t need to say it out loud.
The love is just there for the taking. And it’s a beautiful thing indeed.
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January 26, 2015
Sharing Our Stories
Last week I was in the grocery store with Zach (one of his least favorite places on earth, so you know I was desperate) when in front of me I saw a woman with her son who appeared to be severely autistic. Since the waiting time in our line appeared to be, well, eternity, I made eye contact with her and introduced myself and Zach, who was by then immersed in one of his Dan Gutman books. As her son knocked a bunch of candy on the floor she looked at me and said “he has autism” to which I responded “I get it, my sons do too,” and I could see her instantly relax.
We chatted as autism parents do about doctors and school placements (hers in a self-contained classroom, my two in a similar setting and one mainstreamed in an inclusion setting,) and as the line moved and the cashier motioned for her to move forward her last comment to me was “at least your youngest is mainstreamed, he’ll have a normal life, nice to meet you.” I half-smiled and urged my son forward in line, with the thought “what is a normal life anyway?” resounding through my brain.
If anyone knows, please speak up here.
I get what she meant, or at least what I think she meant. Her son was older, on the more severe end of the spectrum and not likely to lead an independent life. I have a son like that too, and even on our best days together the weight of worry for his future is constantly on my shoulders, an often debilitating companion. It’s hard to have that uncertainty looming there, and dealing with it is a daily process for me.
But dealing with the child on the milder end of the spectrum is difficult too.
Zach is delightful a good portion of the time, but there are times where dealing with him is more difficult than almost any day I’ve had with Justin. Part of the issue is one of maturity (at least I hope,) and part is ironically that he is so verbal that he can articulate exactly what he wants, which unfortunately does not always mesh with what his father and I want. He can be very challenging, and even though I am confident he’ll one day live independently, our day-to-day dealings can be exhausting.
Love him to pieces, but yes, he can be exhausting too.
I think the point I want to make here is that every autistic child is different, but so is the family of every autistic child too. Some of us are in stable loving relationships and have that solace and buffer, and some don’t. Some of us have great financial resources, some do not. Some of us have a tremendous amount of assistance from family and friends, some have to raise their child basically on their own.
Some of us use chocolate to get us through the day (that would be me,) and some of us have willpower (not me.)
I think it’s so important when we autism parents share our stories with each other that we remember we’re all coming from different places. Someone might have what appears to be the mildest autistic child on earth but is a single mom. Another family might have an extremely challenging child but has tremendous financial resources at their fingertips. Some of us are just relentlessly optimistic no matter what life throws at us.
I am extremely jealous of those people.
I don’t think the woman in the grocery store line was judging me, or even comparing our situations necessarily. But her last comment could have come off as an “I have it tougher line” had I chosen to interpret it that way. I think we autism parents need to remember to listen to each other and not compare our situations, as nobody truly knows what’s going on in somebody else’s house or life. With this new year just dawning let’s try to support each other with our collective might, and not fight.
And I promise all of you I’m starting with myself.
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January 20, 2015
Present
I stand in front of the stove flipping eggs, thrilled for once to be cooking because this endeavor means my eldest autistic son is eating breakfast again for the first time in months, and I couldn’t be happier. Since my son has a religious adherence to carbs I’ve tried every food imaginable, from French toast ( a disaster I take the blame for) to six kinds of waffles, and he wanted nothing to do with any of it. I hear his happy “eee” sounds behind me as I flip my scrambled concoction one more time, then feel a warm hand on my shoulder.
I turn around, and Justin plants his hands on either side of my face, looks at me intently and bestows a big kiss on my lips. I watch his own form what I lovingly call the “thin red line of satisfaction,” see him glance at his eggs and smile, then hurry to his seat.
I slide yellow warmth onto our two plates, then hesistate a moment as a memory is triggered. I recall a time ten years ago when Justin was recently diagnosed, how the internet told me my son would have no eye contact, little engagement, perhaps never show me a shred of affection.
I let my mind wander back to that sweet kiss.
I think about how much of what I read was wrong. How despite the web’s dire warnings my son reads, looks at me, loves. For the thousandth moment I wish I could time travel a decade and let my former terrified and harried self know that developing at his own pace would be more that okay- that he would be the delight of my life, a spot shared only with his younger brother, who happens to be autistic too.
I take a moment to remind myself how much has changed in ten years, because in just one more decade I’ll be facing down his adulthood, which if I’m honest, frightens me even now.
And yet, on a cold morning there is a random kiss of gratitude, his way of connecting with me from which I never tire. I don’t know what the future holds in store for Justin, but I do know this.
Ten years ago, in the midst of labels, meltdowns, insomnia, and just ‘sad,” I would never have imagined our lives would turn out like this- predominantly filled with contentment, gratitude, and unabashed love.
And I make a promise to myself the next time I worry about ten years down the road to remember this moment, focus on the present, and have some faith.
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January 12, 2015
Still My Boy
I hear Justin’s bus before I see it, motor revving loudly from a block away so I have time to get up from my curb and wait at the end of the driveway. I’ve been away for two days and am anticipating this homecoming, am usually greeted by effusive hugs and kisses upon any lengthy absence. As I move closer to the bus door however I hear his unmistakeable unhappy sounds, the “protest whine” that means something is not right with my boy’s world.
He advances to the top of the step still uttering his displeasure, staring behind him perhaps at whatever made him sad. He is most of the way down the stairs before he sees me, and he halts mid-step just to take me in. A huge grin envelopes his face, and as he takes that last step down to be at my level he tilts his head up for a kiss, his intense gaze a focus that will not be broken.
He quickly takes my hand pulling me to the front door, and as I thank his driver and aides I hear him resume his sounds of displeasure. Our moment is gone, but I know I’ll carry that look with me as I’ve done so many days before.
Justin and I have always been close. I was the parent he spent the most time with when he was young, and most of the time when he was at odds with the world I was the only one who could calm him. We were so connected, his gaze following me everywhere in his early days. In fact it was that intense stare that made me think initially that his pediactrician was right, that autism was not on the table, that he truly was just developmentally delayed and taking after many of the men on both sides of his family tree.
But then after his first birthday he lost even the few syllables he’d mastered, and I knew there was more going on than just delays. My fears were confirmed when he turned seventeen months. Then our whole lives changed, from the structure of our day to foregoing playdates for therapy. People told me some of what to expect with an autism diagnosis, but nobody told me this, said these words aloud.
He’s still your boy. He still loves and adores you and is deeply, irrevocably connected to you. And no matter what else changes, what life alterations this diagnosis will bring, this truth will never change.
Justin breaks my reverie by clamoring for popcorn, and I am immediately flooded by the demands of two children. I placate Justin with food, but we have one last moment before he eats where he takes my face between his two hands and bestows a kiss of gratitude, a demonstrance of welcome.
Yes, he is still my boy in all his messy, often demanding, yet wonderful glory. We will always have that bond, that ability to make each other smile no matter what transpires in our often chaotic worlds. He is my boy.
And he always will be.
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January 5, 2015
Free
This past summer my family and I spent a day at Great Adventure. It’s the only place Justin, my severely autistic son, willingly stays for more than an hour (I have often joked with my husband that wherever we live has to be within a thirty minute radius of a Six Flags parks.) It’s usually a very fun excursion for us, mostly free of angst, and something I truly enjoy doing as a family.
On our last trip there however, things got a little bit interesting.
We were all safely ensconced on the Runaway Train roller coaster, rushing precariously along to our first hill, when I looked ahead and saw a man in the front row waving his camera. I heard one of the employees scream “You can’t have that on the ride!” and immediately had the feeling all of us were going to pay for that jerk’s need to have a selfie.
Was I ever right.
Halfway up the first hill we came to a jerking halt. I was seated next to Justin, and I immediately took his hand and squeezed it, reassuring him we’d be okay. Within a minute one of the employees was climbing up the side stairs, and I turned to grab her sleeve as she passed by so I could get some information. I told her my boy was severely autistic and that our unscheduled stop would be hard for him, and asked her how long we’d have to sit there.
She told me even when they took the camera from Mr. Important that we’d have to wait for a supervisor to come restart the ride, which would take up to fifteen minutes. I thanked her, and as she recommenced walking, I heard the slow whine of my son’s discontent begin.
I knew this was going to be a very long fifteen minutes.
When you’re a writer metaphors seem to fall into your lap, and as my son fumed next to me (and trust me, so did the rest of the people on the train) I had time to think about being stuck, both literally and figuratively. I looked at my son who was agitated, but not pinching me, crying, or trying to get off the ride as he would have done only a few years before. I was so proud of him as he went with the flow, hopefully reassured by my constant flow of “it will start soon.” I praised him and squeezed his hand and made a mental note of how much progress he’d made.
Then I realized he wasn’t the only one on the ride who’d made progress too.
We all have our demons. Mine involve over-consumption of chocolate (a fun one!), and anxiety. I’m not going to blame autism for this, as even before my kids were born I could be a worrier (I’m fourth generation, as my mom says I come by it honestly.) Before the kids were diagnosed I could talk myself down from any anxiety ledge, and I can truly say it was just a part of my life I didn’t like but had learned to work around.
Then not one but two of my kids were diagnosed on the spectrum, and anxiety became my new best friend.
To be fair, when my kids were in their early years they were plagued by sleeplessness, gastrointestinal disorders, and a general unhappiness that was both exhausting and depressing. I worried they’d never sleep (hell, I worried I’d never sleep again either.) I worried they’d never eat. I mostly worried they’d never experience more than a few fleeting moments of happiness, which is all I ever got in those dark days. My worries became a mantra of “what if this is permanent” which I carried around with me everywhere. I couldn’t shed my fear for more than a few hours at a time. I was literally stuck.
And now, and I realized this on that damn roller coaster, I’m not. Most of the time, I’m free.
I’m not free of everything. My fears of what will happen to my boys when their dad and I are no longer around are permanent. I’ve accepted this, and learned to live with it (somewhat.) To me it’s the great divide between me and parents who have kids who will safely live independently one day. I don’t think it’s a bridge I’ll ever cross, although I’ll wave longingly to the other side from time to time.
But ten years after my first son was diagnosed with autism, I realized I am free of these things.
I’m free of worrying about what other people think if my son’s loud in a movie theater (it happened over break, it was three minutes, I figure the rest of the audience will live.)
I’m free of what other people think period.
I’m free of worrying over whether I’ll ever hear my severely autistic son’s voice (I did, and did so at great length when he read his first book to me at age eleven.)
I’m free of trying to do everything right, because nobody can whether they have kids on the spectrum or not.
I’m free of trying to maintain friendships where people don’t understand my life and logistics are usually more challenging than theirs, and I need their flexibility and understanding.
I’m free of worrying every single day about my boys’ futures. The time for that will come- it’s not here yet. I’ve learned to live more in the present.
I’m free of guilt over what caused their autism, and what I have and have not been able to do for them since their diagnoses.
I’m free of worrying whether or not they’d ever be happy, because sometimes my boys are by far the happiest people in our house.
And even on that roller coaster, as small a thing as it seems, that day I was free of panic over how Justin would handle our interruption. He was fine. So was his mama. It was huge, monumental progress for us both.
And as a new year begins, and resolutions fade with that first of many bites of chocolate, I resolve that remaining free is the one I will carry with me.
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December 30, 2014
The ABLE Act
I have made a daily habit of reading the Autism Speaks blog, and was so heartened to recently read this post, and happy to write about it. On December 19th President Obama signed the ABLE Act (Achieving a Better Life Experience) into law, thus finalizing an eight-year campaign by congressmen and advocates alike to establish tax-free savings accounts to help individuals and families pay for their long-term needs. This will enable families to plan for what often seems like an uncertain future for their children with disabilities, and will make that planning just a little bit easier.
And as I think of my eleven-year-old who will definitely require life-time care, the passage of this act into law helps lift some of the fear of how we’ll care for him during the decades he won’t be with us.
The bill garnered bi-partisan support, and came to fruition due to the efforts of Senators Bob Casey (D-PA), Richard Burr (R-NC), Harry Reid and Mitch McConnell. Senators Ron Wyden and Orrin Hatch played vital roles as well.
The ABLE act permits tax-free savings accounts to help pay for disability-related needs. The law eliminates the current $2,000 cap on savings for disabled individuals. Prior to the ABLE law if disabled individuals had more than $2,000 in their savings accounts they were at risk for losing their SSI (Supplemental Security Income,) as well as Medicaid. Under the new law funds saved would have to be used for disability-related needs.
Families of individuals with disabilities and disabled individuals themselves can now save for such things as education, housing, transportation, health issues, and other expenses as well.
I will share with all of you that thinking about Justin’s adulthood, particularly when his father and I are no longer here, is the most daunting aspect of his autism to me. The passing of the ABLE Act makes me breathe just a little easier.
My hope is that for anyone who didn’t know about its passage and reads about it for the first time here today, that the knowledge that it’s now out there will do the same for you as well.
Here is a link to what Shannon Knall, CT Autism Speaks Policy Chair and autism advocate has to say about the passing of the ABLE Act on the Autism Speaks blog:
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