March 24, 2015

Transition

Posted in My Take on Autism tagged , , , , at 2:54 pm by autismmommytherapist

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It rests precariously on the edge of the countertop, the brightly colored flyer proclaiming “Transition!” in bold letters, urging me to read it and ignore the dinner I’m supposed to be preparing. I toss it into a pile I actually have a prayer of looking at later and return to my prep for potato-chip chicken (I know, worst mom ever, but it’s delish!) I have more mundane matters to attend to right now, like trying to remember where I put the ketchup when I began this endeavor. It will be hours before I return to this invitation, but return to it I will.

My son is almost twelve, will be officially “in transition” in two years. For a planner like me, I know I have to read that paper.

This is not the first missive I’ve received either through the mail or electronically on this topic, but until today I’ve either ignored the emails or tossed the info, deeming it too soon to delve into this arena of Justin’s impending life that I admit I find completely intimidating. I know it’s still early, and that I have wonderful resources at my disposal.

Justin is in an exemplary private school for autism, and I’ve been assured they will do whatever they can to make certain my son is engaged in some productive activity after he graduates at twenty-one. I have friends with adult children who have already passed that “legal to drink” mark, and I know they’ll help me the best they can. There are also a myriad of agencies in New Jersey with fabulous workshops for me to attend in the future, all of which I’m sure will guide me well. But the real conundrum for me is a question only Justin can answer, and I’m not sure he’ll be able

to do so.

What does my boy want to do with his life?

The truth is college, career, and independent living are not in the cards for my son. He can nod “yes” or “no” to uncomplicated questions, and make simple requests on his iPad for items he wants. At some point however I’m going to want his input, and I just don’t think I’ll get it, although I never truly thought he’d speak and at age eleven he now has a few words. I do have a dream for him- that he’ll live on a farm, work the land a few hours a day in some capacity, and have access to horses for frequent riding.

But honestly, I really have no idea if this is what he wants to do. His main activities to date are playing DVDs on his player, engaging in some computer games, and occasionally watching a movie with his mom and brother. He likes a brief daily outing, but mostly he likes to be at home, and by home I mean inside the confines of our house.

Lately, as I’ve been talking to friends in a similar boat, it’s struck me that I will probably be making all the decisions regarding the last sixty years of his life for him. It’s a huge responsibility, one I hope I get right.

As I write my thoughts it also strikes me that I will have to figure out a balance for him, a life comprised of work he may not want to do, coupled with his leisure pastimes which he would engage in all day if we let him. I take a deep breath as I put that mimeographed missive in the “done” pile and walk away, realizing it really is too soon to plan.

The autism landscape is thankfully changing quickly. I simply cannot anticipate what Justin’s options will be in nine years, and more importantly, I can’t know what Justin himself will be like in less than a decade. All I can do is continue to do my best by him, and hope.

And I’m going to hope too that somehow, in his way, he’ll let me know if he’s happy.

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March 17, 2015

My Birthday Boy

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:38 am by autismmommytherapist

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To Zach, my dear, beautiful boy,

Just a short time ago you turned eight (and it seems a short time ago you were still in diapers.) As is the McCafferty custom you had no less than four birthday parties (your mother believes everyone should have a birthday month,) and you enjoyed all of them thoroughly. You’ve grown into such a wonderful “medium boy,” as you like to say.

And your father and I couldn’t be more proud.

We’re proud of your kindness and generosity of spirit.

We’re proud of how you share your challenges and triumphs with Justin even though he doesn’t respond in words.

We’re proud of how hard you work in school (even when you don’t always want to.)

We’re proud of how you stand up for yourself, telling others your autism is not a “boo-boo on the brain,” but a different way of thinking.

We’re proud of how hard you work in your after-school activities.

We’re proud of how you’re always at your brother’s side to help him when he needs it.

We’re proud of your sense of humor and killer knock-knock jokes (you got those from your dad.)

We’re proud of your wish to right the injustices of the world (and your fearlessness in doing so.)

But mostly, we’re proud of your heart full of love, and so grateful you’re ours.

We love you, happy birthday sweet boy!


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March 9, 2015

Wanting More

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 2:30 pm by autismmommytherapist

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He brushes by me, my eldest son, swatting away the proffered riding helmet held in my outstretched hand. He is singular in his intent, striding over to the woman in the corner with a smile that’s taken over his entire face.

I watch, mesmerized, as my son purposefully approaches a stranger, an action so alien to him my breath catches in my throat.

He pauses in front of her, gazes deeply into her eyes, and rests his head on her chest. I watch as his arm encircles her waist.

She is charmed I can see, only breaks the connection when her adult daughter comes back into the waiting area and slips her arm around her mom.

Justin takes a step back, then emits a loud “eee” as he grabs each of their outer arms with one of his hands.

He smiles ebulliently and looks back and forth into their eyes, communicating his joy at his upcoming horseback riding lesson with every inch of his being.

I am still, watching this new milestone unfold. My son, who is severely autistic and mostly non-verbal, has drawn two people he doesn’t know into his coveted inner circle as I watch in wonder. All too soon the spell is broken, with the women moving on and Justin searching for juice. We move on to our own car, the two of us. I am touched by this exchange, but left wanting more.

I am left wanting so much more.

Not for the first time nor for the last time am I left wondering what is going on in that beautiful brain.

I know until the end of my days I will be left wanting to know his thoughts, his fears, his joys. I’m grateful for what he can express. I’m grateful for what we “just get” without him having to say a word.

But just once I’d like a sentence, a phrase, a sentiment expressed in words or typed.

I want more. It is a wish I keep hidden away, often too painful to contemplate.

He turns and kisses me as he enters the car, his smile sweetening the moment.

And I wonder, as I rev the engine to life, if I will ever get my wish.


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March 2, 2015

Never Give Up

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 3:01 pm by autismmommytherapist

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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

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 12:46 pm by autismmommytherapist

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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

Posted in My Take on Autism tagged , , at 5:32 pm by autismmommytherapist

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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

Posted in My Take on Autism tagged , , , , at 2:20 pm by autismmommytherapist

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

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:10 pm by autismmommytherapist

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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

Posted in My Take on Autism tagged , , at 12:50 pm by autismmommytherapist

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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

Posted in Life's Little Moments, My Take on Autism tagged , , at 12:26 pm by autismmommytherapist

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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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