November 22, 2017

Word

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:19 am by autismmommytherapist

He snuggles contentedly on my lap, my severely autistic nine-year-old son who loves his evening storytime with Mama. This is a ritual we started seemingly moments after he was out of the womb, this reveling in words, a sensory sanctuary for my boy as he rests securely in my arms. Justin has always loved books, still does to this day.

The apple doesn’t fall far from the tree even with severe autism.

Justin’s favorite author is by far Eric Carle- he has an entire bookshelf dedicated to the man’s works. Every night either he or I chooses one, and we settle in on his glider to read a story I know he knows by heart.

But I also know he can read those hallowed pages too.

Justin has hyperlexia, which enabled him to read sight words at three, and entire sentences at four (the autism bonus!), even though he’s on the severe end of the spectrum and non-verbal. One of his therapists actually discovered his comprehension when she put out an array of simple words on index cards, slowly increasing the field to twenty and even thirty words until we knew undoubtedly he could read. We used the Edmark program to further his learning, and at the tender age of four we knew he could read complete sentences because he was answering the questions correctly.

And yes, I was proud of both accomplishments. Yet there’s one I’m even more proud of to tell the truth.

For years I attempted to do intraverbals with Justin, stopping strategically during his favorite songs and stories to see if he’d “fill in the blank.” Each time I was met with silence. I knew he knew the correct word, but his apraxia was his silent roadblock to participating. By the time Justin turned nine he had a few words, “Mama,” “Dada,” “juice,” but he rarely made mands or requests with his voice, preferring to use his communicative devices which ranged from sign language to PECS to Proloquotogo on his iPad. It has always been my dream that Justin would at least acquire some functional speech. I wish this because devices can’t always be trusted to work, and since there will be dozens of people who care from him throughout his adult life to death I knew I’d feel (slightly) better about leaving him someday if he could communicate simple wants through speech.

And my gut told me the way to open that floodgate was through stories and song.

This night as I settled into our chair to read “Baby Bear, Baby Bear, What Do You See” was just like any other night. Every other page ends with the refrain of “What do you see?” and as usual, I paused prior to the last word, hoping my boy would fill in the gap. The first few pages I was met with silence.

And then, about midway through the book, I heard his faintly audible “see,” and watched as he turned to me with a big grin. This word was out of his lexicon of “Mama,” “Dada,” and “juice.” He looked utterly delighted with his accomplishment, and continued to fill in the last word for me on every subsequent page.

I can assure you his mother was just as delighted.

Years later, he is not only filling in words for me, but has moved on to master complete sentences. As Seinfeld would say he is a “low-talker,” and many consonants are still difficult for him. I have to be close to my boy to hear his attempts, and most people would not be able to distinguish many of his syllables. But he can share his love of literature, and does the same with the songs we sing together too.

And as I suspected, he vocally mands more frequently now too, a fact for which I am eternally grateful and proud.

Don’t get me wrong. I’m proud that my boy can read. I suspect some people on the autism spectrum never master that skill, and I’m grateful he has it. But the truth is he has the innate skill for it and it came to him easily. He never had to struggle.

For his wonderful words he has had to work far more diligently than any of us can imagine.

I’m proud of him for perservering against his apraxia. I’m proud of him for struggling for victory.

I’m proud of him for filling that silence with the miracle of his voice.

I’m proud.

 

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November 14, 2017

Disney and Universal

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:59 am by autismmommytherapist

It’s that time again folks- time for my post-mortem on our semi-annual Disney trip with the McCafferty clan.

Spoiler alert- it went great.

Just in case someone’s eyes are starting to roll in a “nice that they can afford this” way, I will send a shout out to Grandma who paid for most of this trip, and to whom we are all eternally grateful that I even have the opportunity to take my kids on vacation.

And while I’m being thankful, I must include Justin.

This year we changed things up a bit and went to Magic Kingdom one day, and Universal Studios for two days. We had never been to Universal before, and to tell you the truth I held my breath on this one, as sometimes new things are not Justin’s forte.

Yup, even when that something new is an amazing amusement park.

I will share with you all here that he was magnificent. I will also share with you all that I had practically every minute of our three day trip planned for maximum “Justin enjoyment,” which was absolutely necessary. I knew where we’d eat each day and what time. I had a plan B that included half our group with a planned itinerary of what to do if Justin found the Harry Potter attractions to be of no interest. I had sketched out which rides and attractions we’d probably do and in what order. I even built in bathroom breaks.

In other words, I was in my A-type glory.

And it worked. At Magic Kingdom we used both our fast passes and the disability program to piggy-back rides all day, and because the park was not crowded we were able to go on about ten rides in under seven hours. Justin is okay waiting on short lines- what he’s not okay with is wandering around waiting for his ride wait time to come up so he can get on the fast pass line, which is how Disney’s disability program works. Fortunately because the park was not crowded we were able to fit in a ride or two in between our different passes, and we never had to wait just to get on line.

Taking in the sites is also not Justin’s forte.

We had the same success at Universal, but I will tell you that the real reason we were able to enjoy the trip and I was able to see the joy on my youngest son’s face when he visited Diagon Alley and Hogsmeade was Justin. Our first two trips to Florida were somewhat rocky with him, ranging from issues on the plane to sleeping to asking to go home every two seconds. This year it was as if the gods aligned for everything to come together. Except for the first night Justin slept as well as humanly possible in a bed not his own. He wasn’t ill. He waited. He was patient. He didn’t try to escape activities that held no interest for him.

I know. I need a moment for that last sentence.

And I will tell you this. Disney/Universal are really the only places we can go on a family vacation where Justin will be engaged, and not hanging out in our hotel room pacing all day with a frustrated adult in attendance. Vacation spots which would hold great interest to most families hold none for my boy- it would not even be worth the money to try. The truth is I want this family to have vacation memories too, despite the risks taking Justin on a plane, despite the uncertainty that he’ll sleep, despite the unknown of whether or not he’ll enjoy himself. I always feel a lot is riding on these trips- the chance for Justin to try a different environment, and just the plain old opportunity to have fun.

Remember fun folks?

There are so many factors that went into making this trip successful. Planning. Good weather. Fairly low attendance at the parks. Justin’s innate desire to have fun. His ability to wait.

His ability to be somewhat flexible. I know, can’t believe I wrote that one down either.

All of the latter reasons have come about because of so many different reasons, but I believe we had a successful vacation is because from a very early age, even when it seemed impossible, we exposed Justin to different places, and made him learn how to wait. I will tell you that I have little half-moon scars from his tiny teeth on my shoulders from way back when where Justin expressed his extreme displeasure at being somewhere most kids would decide was fun. His teachers, father and I persevered, and eventually I had a kid running up to me with sneakers in hand (often at inopportune moments like Christmas or 8:00 PM) begging to go out. It was years before this happened.

And it was worth every grueling moment.

The point of this missive? Get out. Have help if you can. Have a plan B, C, and D. When people offer assistance take them up on helping you take your child out on an errand, to a meal, to something that ostensibly should be fun. I will tell you that leaving the house with Justin was soul-sucking hard for years, and now it is mostly a joy.

Yup, I said joy.

My final piece of advice?

Get out, and don’t give up.

 

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November 1, 2017

Connection

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 9:15 am by autismmommytherapist

If I’d blinked I would have missed it.

As it was I heard my husband frantically calling my name, and I raced into my eldest son’s bedroom, wondering what calamity had befallen us now.

When my husband uses “that” tone, it’s usually a calamity.

I rushed in to find this tableau spread out before me- my severely autistic teenager sitting on his bed, grasping my mildly autistic 10-years-old’s arms, smiling and gazing up in adoration as his little brother towered over him.

I stop, hold my breath, and wait to see what will unfold.

I watch as my eldest child, who never really interacts with my youngest child, stands and bestows the sweetest of kisses on his sibling’s lips.

I smile in turn as I watch my youngest break into a huge grin and let out an “awwww,” clearly thrilled by the encounter.

I grin through eyes welling up, thinking of the hundreds of times I’ve tried to contrive this scenario, forge a connection between the two, let my youngest know his brother loves him.

And I realize, that love is there. It’s been there all the time. Justin may not show his bond the way we typical folks do, but he feels it too.

Tonight, he’s shown he loves his brother. He’s made him feel seen.

And I admonish myself for ever doubting this, for being sad that my youngest has asked if his brother loves him, for not being able to give him tangible proof that he does.

Tonight, there is proof. There is a connection strengthened. There is one son’s awe, and another’s delight.

And I wouldn’t have missed it for the world.

.

 

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October 25, 2017

So Many Questions

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:48 am by autismmommytherapist

I feel his tiny teeth before I see him lock down on the soft flesh between throat and clavicle, and I try not to wince as I attempt to disengage him while carrying on a conversation with a woman with two toddlers in tow. “He’s autistic” I say after she’s come over to me in the sober halls of the museum we often frequent with success, has noticed my struggle with my six-year-old and has offered to help. I see sympathy chased with pity flit across her face as I eventually free my bruised skin from my son’s clutches, thank her for her kindness, and move toward the exit with Justin in my arms.

We’ve lived half a decade with this diagnosis, he and I. I’m growing tired of explaining it.

There have been so many questions over the years. “Did he have it from birth?” (yes, thought it was colic). “Does anyone in your family have it?” (Technically no, but the jury’s still out on that one). “Did he get it from vaccines?” (Not even going there). “Will he grow out of it?” (No, it doesn’t work that way). “Does your other child have it?” (yes, but a different kind, go figure).

So many questions, so little time.

If I did have the time in these encounters, which I rarely do with my severely autistic son, I could educate these strangers with their generally polite queries about autistic disorder, and the different ways it’s affected both of my sons. I could talk about the spectrum, and trot out the old “If you’ve met one person” adage to elaborate on how differently each individual presents. I could talk about theories of misconnections in the brain, of cell phones and viruses and hell, even circumcision, as ideas touted as to the origins of autism. I could spout statistics about how many autistic adults eventually speak and how many need lifetime care, what percentage of the population has it, and the differences between the one where the child shows signs at birth and the one where your seemingly neurotypical toddler seems to vanish before your eyes.

So many of these facts ingrained on my soul.

None of them really get to the heart of what autism really means for my family.

But if I had the time for a chat, hopefully with a sitter and a little coffee and chocolate thrown in, this is what I would say.

Autism means embracing an altered landscape of living for both of my sons.

Autism means learning to communicate with my eldest son with a look, a hug, the ability to almost read his mind, and sometimes forgoing words.

Autism means pushing my children to be the best they can be, living their dreams, not mine.

Autism means losing a lot of sleep.

Autism means learning to live with knowing I won’t be around to protect him forever.

Autism means never getting over it.

Autism means making the most of every moment we still have.

Autism means patience, and kindness, failure (mine), and vulnerability.

Autism means reveling in every success no matter how small in a way I would never have if my kids were neurotypical.

Autism means sometimes struggling to keep a marriage alive.

Autism means always having a plan B, C, and D, wherever we go.

Autism often means exhaustion.

Autism means accepting that everything I took for granted, every minute detail about raising children, has been turned upside down.

Autism means isolation.

Autism means cleaving to those who “get it.”

Autism means financial hardship.

Autism means embracing what gives them pleasure and sharing it, even if it’s a Baby Einstein video for my teenager.

Autism means meltdowns and fear and frustration.

Autism means unmeasurable pride at successful outings.

Autism means being part of an unbreakable community.

Autism means days that are soul-sucking hard, and days that are brilliant with connection.

If I had that time, I would tell those inquisitive souls autism means struggle, and accomplishment, sadness and joy.

I would tell them for me it means embracing every inch of who my boys are, and always striving to unearth their best selves.

And as I finished that last crumb of chocolate, I would tell them autism means never giving up on attaining happy, healthy, and safe lives for our children.

 

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October 20, 2017

Dear Kim

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:51 am by autismmommytherapist

(Editor’s note: this is the letter I would write to myself if I were an old lady telling my younger self things would be okay, even after both boys were diagnosed with autism)

Dear Kim,

Hi hon. I want you to know, I see how exhausted you are. You just got your severely autistic five-year-old settled into your district’s kindergarten program, and what a long five years it’s been with him, even with all the progress he’s made. I know you thought you were home free with your youngest boy, the one who made all his milestones on time and has been babbling up a storm, the one who your pediatrician says is “fine” when you make your anxious inquiries. I know you went on a much-deserved vacation and came back to a sick toddler who’s stopped speaking, has a rash all over his body, and has lost the light in his eyes. I know you’re thinking that Justin showed signs of autism as early as six months, and this baby didn’t until this week. I know you know what the doctor is going to say when you take him in for that appt., the myriad phone calls you’re going to have to make, the Early Intervention program you’ll have to create for him. I know how much work this will be for you, once again.

I know you’re wondering how the hell both of your kids could have two different kinds of autism.

It must seem impossible to you, how you’re going to manage, how you could possibly create a life where you meet the needs of both your boys. After all, Justin is still potty-training (so much fun!), still “learning” how to sleep through the night, and still refusing to eat anything other than a carb on most occasions. There’s still his meltdowns to deal with, your need to create plans B, C, and D whenever you take him anywhere.

There’s still the enormous amount of time he needs you, and the depth of that need.

You comfort yourself with the fact that your oldest will be out of the house for seven hours a day so you can focus on your youngest’s needs, and believe me, that time will save you. Despite your exhaustion you will be able to manage the eleven different people traipsing through you house for the next fifteen months (you should have been a party planner, your attention to detail from being a teacher will come in handy). You will be grateful that at least this time you live in a state where there is actually an Early Intervention program that doesn’t expect you to do it all yourself (sorry Virginia), and these practitioners will truly help your child. You will spend more time with them than your own husband.

And a bonus; two of them will become good friends.

I know you are mourning quietly in your few moments of solitude, because that’s all the time you get. I know this experience with Zach is so different than what happened with Justin, because somehow around the time your oldest was learning to sit up you knew he was different, and sensed his difference would be challenging. I know this gave you time to ease into his diagnosis.

This time you went away and came home to a different child, one who seems to have most of the joy sucked out of him. You wonder if you’ll even see that spark again. You wonder if he’ll ever say “mama” again.

You wonder if he’ll ever be happy.

I want you to know that I see the strain, the way your husband believes your little one will “come back,” and how you just can’t allow your heart to embrace that idea because the alternative is too painful. I see how your heart will love them both no matter what, but how much you wanted at least one to live an independent life, and how that dream may now be shattered. I see you both mourning the now and the later, acknowledging that you will have to wait and see what happens. I see that is perhaps the most difficult part for you, planner that you are.

I see you desperately wish someone would just end your misery and tell you how it all turns out.

I can’t tell you the ending; I can’t even tell you the middle. But I can tell you that you will make it through those early years, the ones where your entire existence is therapy, chores and the anxiety that takes up permanent residence in the recesses of your brain and claims your sleep. I can tell you that your attention to detail, your refusal to cut corners, and the decisions you make regarding school placements, diets, and therapists will pay off.

I can tell you that your eldest child will one day not only sleep through the night almost every night, but will joyously welcome slumber.

I can tell you your eldest child who hated the car and going anywhere for more than thirty-two minutes will now revel in your excursions, and bring you his sneakers in a plea to go out.

I can tell you this same child now eats lettuce and broccoli with gusto (and yes, you wanted a medal).

I can tell you your youngest will not only speak in full sentences again, but will keep you running to google to answer the vast amount of questions your old brain no longer has the answers to.

I can tell you your youngest will have friends, will enjoy a wide array of activities both in and out of school.

I can tell you a few years from now you will have no doubts about his ability to lead an independent life, and to look out for his brother when you’re gone.

I can tell you both boys will regain their happy, joyous souls.

I can tell you that you will once again sleep (albeit it’s “old lady sleep”).

I can tell you your daily life will still have its struggles, but they are mostly outweighed by its joys. I can tell you your life will always be shades of gray, some mourning of what could have been, some acceptance, and always some celebration of what is and what will be.

I can tell you that you will have a happy family, the dream you held onto all those years you struggled to create one. It will look different than you expected. There will be challenges you could not have foreseen.

I can tell you your profound love for them both will make a difference.

I will tell you, a happy family it will be.

And for you, it will be okay.

 

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October 9, 2017

Transition

Posted in Life's Little Moments, My Take on Autism tagged , , at 11:27 am by autismmommytherapist

I have to tell you readers, my brain is spinning a bit lately.

You see, my son, my beautiful severely autistic son, turned fourteen this spring, which means his next IEP meeting is a “transition” meeting. In an effort to prepare I googled “transition,” and it means “the process or period of changing from one state or condition to another.”

I know it is a process his mama will have to go through too.

To be honest, my quest for transition information is a bit of a first world autism problem for Justin. There are so many resources out there, numerous agencies with websites and webinars dedicated to just this very process that I should be able to access the information I need pretty easily, for which I am grateful. I can’t imagine going through this twenty years ago.

Hell, I can’t imagine doing any of this twenty years ago.

But still, it’s overwhelming. I recently printed out information from the DDD website about all the issues I will need to address. I have to make sure he’s eligible for DDD and Medicaid. I will have to apply for guardianship (it somewhat amuses me that I will have to pay several thousand dollars to make sure he remains mine). There is a potential job (?) to consider. Housing. Legal planning.

Also there’s who will love him when I’m gone, but I don’t think that will be on the IEP agenda.

It turns out Justin’s school is planning an information fair that will take place hours after my IEP meeting, so in typical “awesomeness” fashion his principal agreed to meet with me a few weeks beforehand so I’m not walking into this meeting blind about what options await my boy. Planner that I am I need to know my choices, and trust me, I’m grateful that with his school there will probably be choices for him. He’s doing really well there; perhaps a small job will be in store for him, perhaps not.

I would really enjoy telling his little brother that Justin is earning his keep.

I don’t know what will happen at his IEP meeting, but I’m already creating my list of questions (it will be long), and I’m feeling rather positive about future changes, which from a woman who’s not big on change is a huge step. It helps immeasurably to know he’s in good hands, that his last seven years of educational entitlement will have a variety of possibilities to engage my boy.

It helps stave off my other worries. Where will he live? Will he get into a day program? Will he deign to stay in said day program? Will I become his nanny when he turns twenty-one and graduates with me sobbing my guts out noisily on graduation day (trust me it’s coming). Will he be safe? Will I ever get some “Kim time” again (I have my priorities).

Will he like his adult life even a fraction of how much he loves his childhood?

See, the thing is, I want it all to be good for him. I remember mentioning his “remaining eighty years” once at an IEP meeting years ago (I think he was five) and getting some incredulous looks around the table, but yes people, I think about this on a daily basis. He’s worked so hard all these years. He’s in the least behavioral and most academic of the classrooms for his age group at his school. He can’t go an hour without hugging me for no reason. He laughs often.

He’s happy.

And I’m going to do the best I can to make things stay that way.

 

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October 2, 2017

Shades of Gray

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:58 am by autismmommytherapist

It was a simple question, asked at a party of people I hadn’t seen in years. “What grade is Justin in now?” was the query, but the truth is I had to stop and think about it because they don’t really do grades at his private autism school. “He’s in ninth” I replied, and we moved on to talking about our other kids and people we had in common. Soon a friend of my friend captured her attention, and I was left for a moment alone, with chicken on a stick, some good pinot grigiot, and my thoughts.

Ninth grade. High school.

My boy is in high school.

One would think that realization would have occurred to me in August, not September after he’d already been back in school several weeks, but honestly the end of August/beginning of September is such a blur I’d only been able to retain one kid’s grade (5th, so proud of myself), and hadn’t really given much thought to such a momentous leap on my eldest’s part. As I savored my poultry and looked around the room the enormity of his age, his maturity (and mine) hit me.

If he wasn’t severely autistic, in three years he’d be going to college like all the children of everyone else in this room who had their progeny at a decent age.

I won’t lie to you, this realization hit me like a ton of bricks. Since my other child is younger than Justin I haven’t yet been a high school or college mom, so I’ve only watched vicariously as my nieces and nephews and friends’ kids have gone off to the big time. I’ve hugged the parents of those children, reassured them that they are fully “cooked” and will do fine. I’ve consoled them when empty nest syndrome ruled the day. I’ve listened to their fears and concerns (will one ever sleep, will one party his tuition away), and have reinforced my feelings that their kids will be okay, they’ve been given the tools to move on to their (more or less) independent lives.

An independent life. That was the brass ring for me for Justin’s hoped-for progress when he was diagnosed at seventeen months a decade-and-a-half ago, and it’s been the hardest thing for me to relinquish in my dreams for him.

Don’t get me wrong. Sometimes I’m sad that he’ll never go to the prom, attend college, have a career, or get his license (okay, maybe not so much that one) too. I will probably mourn these things my entire life, not because I want to relive these events through him, but because I know they would have brought him pleasure. I have read articles over the years chastising parents for feeling this way, and to that I literally say “phooey.” These events are precursors to finding love, learning skills, and the holy grail, independence.

It’s okay to be sad sometimes.

But the truth is my sadness is tempered by the fact he will never know what these things are, and won’t miss what he doesn’t know. My boy revels in routine, in having his mom greet him when he gets off the bus, in making him his expensive pretzels, and singing him the same three songs he’s listened to since babyhood. He’s happy, gloriously so.

And trust me, having a severely autistic teenager in the house who’s predominantly happy is the holy grail too.

I’ve learned to shelve my fears over his future both so I can function, and because I choose to enjoy my present life, which despite the challenges of raising an autistic child is pretty great. I don’t want to miss a moment. He is joyous, and safe. He loves his life.

And for that, I am eternally grateful.

Being a caregiver to a disabled person is rewarding, and challenging, fulfilling and grueling all at once. My husband and I don’t know if we’ll be doing this full-time for twenty-five years or fifty. We struggle with determining what we think will be best with Justin, all the while knowing we may not have many different options for his lifetime care. I struggle also with figuring out what’s best for me- I seesaw between a need to regain my own independence and keeping him with us until the last possible second. I’m not sure what’s best for us.

More importantly, I’m not sure what’s best for him.

I’m hoping the decision becomes crystal clear for me down the road, revealing our best option like a good series finale that answers those questions you’ve been carrying about for seven seasons. I don’t yet know what I’ll decide.

But I do know this.

My youngest, who is mildly autistic, has a great shot at college, a career, a wife, and a life away from his mom and dad. Will I miss him when he goes? Absolutely.

Will I revel in the fact that he can leave? Absolutely too.

Will I forever mourn and simultaneously just deal with the fact that Justin will always need help to make it through the day? Yup, that too.

Our decisions are not clear cut. Our feelings don’t have to be black and white.

I’m pretty sure for a good long time I’ll be dwelling in shades of gray.

 

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September 25, 2017

Dear Soon-to-be-ex-case-manager

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:20 am by autismmommytherapist

Dear Soon to be ex-Case Manager,

The call from you came yesterday with that bland generic “my sons’ public school district’s” phone number popping up, and as always, I held my breath.

Is Zach sick?

Did I forget to send in his lunch (again)?

Is Justin’s placement in jeopardy (Dear God no, it’s too early for wine).

Fortunately it was none of the above, just you dear case manager, calling to tell me after about eleven years of almost continuous service for our boy, you’ve been reassigned.

Cue adrenaline, and deep deep regret.

I’ll have Justin’s public school administrators know that this was not in the Kim McCafferty lifetime plan, the one where we had you for the next seven years, inappropriately invite you to his high school graduation, and bask in our mutual understanding of one another. We’ve had two other case managers over the years and they were lovely, but neither lasted that long so I didn’t become attached.

Yes, I know I have an issue.

I easily recall the day you let us know you’d been reassigned once more to our family. It involved my 6’4” husband almost dancing (yes, I said dancing) across the front lawn holding out the phone to me as I waited for Justin, crowing with delight the words that filled our hearts- “She’s back! She’s back!” as I skipped (yup!) across our grass to grab the phone to hear it for myself.

Pathetic? Maybe. But I guarantee any parent of an autistic child reading this gets it.

The thing is, you “get” us, and you “get” Justin, and that’s absolutely priceless. I remember meeting you eleven years ago after we’d just moved to NJ from Washington, DC, and frankly, I was still in a bit of shock (and unbeknownst to me at the time about to get pregnant again, trust me, an even bigger shock). You calmly walked a very stressed out mom through all our options for Justin at that first meeting, and when things didn’t go as planned, helped us come up with viable alternatives.

You truly listened to us. As a former educator, I knew it was a gift.

The thing is, you’ve watched him grow up. You’ve seen him through three different communication systems, just as many placements, and you never balked when we came to the difficult decision that perhaps a public school placement wasn’t the right thing for him anymore. You (almost literally) held my hand as we looked at different options, scouted out others on your own, and led me away from places you told me you’d never send your own kids.

I can’t tell you how much I appreciated your honesty.

You always returned my calls, even in the early days when the sheer volume of my queries would have driven anyone to quit. You supported our choice of placement, rejoiced when he got accepted. When his iPad eventually broke (twice) you moved mountains to get it fixed so my boy wouldn’t be without his words.

In my words, I’m so grateful that you cared.

You see, the thing is dear case manager, I was hoping if this family kept our heads down the powers that be wouldn’t notice you’d been with us almost a decade, but I guess a little reorganization is in order, and it’s time to share the wealth of you. Before you go I want you to know how much your concern for our family, your organizational skills, and your knowledge base helped us. You were one less thing I had to worry about, and trust me, especially in those days where I had two autistic kids under the age of four, I needed one less thing to worry about.

I know that’s not in your job description, but thanks anyway.

You really were magnificent, and trust me, I’m a former teacher from a family of them, I know what’s out there. You will forever be a part of “Team Justin,” and have made a major contribution to my productive, kind, and happy child. Please take that knowledge with you when you go, and know how lucky those future families are (yes, I’m jealous). And know that if you ever come back, skipping and dancing will again ensue.

It’s a promise.

Thank you.

 

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September 19, 2017

Enough

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:09 am by autismmommytherapist

I still remember the day I knew my autistic son would remain on the severe end of the spectrum.

Justin was five, and in the last few weeks of his pre-school program before he would transition back into district to his hometown public school. I recall going to his classroom for some type of program, the theme of which escapes me, and seeing a little blond haired girl he’d started with almost two years prior who had presented almost exactly like my boy. I remember watching as this young lady used words to get what she wanted, made eye contact with everyone around her, was able to sit still while waiting for the show to begin. She still flapped her hands as she waited, but none of the other stims I’d seen her do when she began school at the tender age of three seemed to have remained with her. She was joyful, talkative, engaged.

She no longer bore any resemblance to my son.

I recall how the realization hit me like a wave, starting in my gut, hitting me hard in my heart and flooding my eyes with tears I had trouble keeping back. My boy had been diagnosed at seventeen months, back when that was unheard of. He’d been in either a thirty hour a week ABA program or full day pre-school for three-and-a-half years. Had he made progress? Absolutely. He had gone from using meltdowns to get his needs met to using the PECS system very successfully to acquire what he wanted. He had finally learned how to sleep through the night (my favorite of all his skill acquisitions). He was eating things that didn’t fall into the carb category, and we’d finally found ourselves able to take him places with varying degrees of success. Potty training had been (mostly) conquered. His life, and by extension, his parents’ lives, were so much easier than those dark days of his infancy when we didn’t know how to make him happy, and his toddler years, where almost every aspect of his life was a struggle.

But still, there was so little eye contact unless it was with us. He still spent a good deal of time unhappy and at odds with the world around him.

There were still no words.

I remember watching the program with an overwhelming sadness, with hope waging a steady war with reality inside my head. Part of me said he was only five, how could I possibly predict the trajectory of his life at such a tender age, particularly when I knew he was bright?

But the truth is, I just knew. After all, I had another autistic child at home who had regressed at twenty-one months, lost all of his words, and had retreated into his own world. Within three months of therapy he was speaking again, and while different from the child we had known before, we watched as every day he made tremendous progress in regaining the skills he had lost, showed an increasing interest each day with the world and the people in it. All of his Early Intervention therapists were amazed at how quickly he progressed, touting him as an “early therapy success story.”

And I remember thinking fiercely as I drove home that day that despite the modest gains Justin had made, I considered him a “success story” too.

I admit, after my realization I mourned again, as I had when he had been diagnosed, and I knew from my prior teaching days exactly what he and our family were in for. I had never wished him off the spectrum- I didn’t believe it was possible frankly, and I had taught plenty of students with mild autism who had wonderful and fulfilling lives. Over time I accepted he would not have the life I had assumed he’d lead- the one with friends, and driving, and college, and sleepovers, and someone to love- and the one that was hardest of all for me, independence.

It’s his inability to lead an independent life that still lays me low today.

Over time, my premonitions about both boys turned out to be right. My youngest is now fully mainstreamed in a non-inclusion class, and shed his 504 this year. He has friends, participates in activities within and outside of school. He talks about his future wife and five kids, and my heart never clenches as I anticipate he will realize that dream someday (hopefully with a well-paying job to go with it).

My gut tells me he will be able to care for himself after I’m dead. For this, I am eternally grateful.

Justin will not. And I know, as I know I will never give up eating chocolate, that I will never get over this aspect of his disorder.

The truth is, I haven’t made my peace with it, and I expect I never will. When I think of the enormous amount of details that go into keeping my now teenaged autistic son happy and the dozens and dozens of people who will be charged with caring for him until his death, I am overwhelmed. The thing is however, his father and I and many, many, many other people have been able to craft a wonderful life for him, the one that he wants, not the one we wanted for him. Justin adores his school. He loves going places for short periods of time, and has a number of locations in his repertoire. He gives me more hugs and kisses than any teenager gives his mother on the entire planet.

My dreams for this level of detail to exist for the forty years he’ll be there without me will probably not be realized- my rational mind knows this.

I haven’t made my peace with having him live on this earth without me, but I have made my peace with this. I’ve let go of what I thought he’d need, and accepted what he does need. He needs his autism school. He needs his mom, his dad, and his little brother. He needs exactly fifteen pretzels nuggets daily to fill his tummy. He needs access to the computer so he can “drive” on the Hertz rent-a-car site (he’s been all over Jersey!).

He needs affection, and hugs, and love.

Don’t we all.

So I’m trying, and I am a work in progress, to dwell in the now, not in the later. My “now” is two ridiculously happy boys on the spectrum, who revel in their lives, one on the severe end, one not. They love school. They have activities that engage them. They relate to and adore their families. Both of them love their pretzels.

They are happy.

And for now, I am trying very hard for that to be enough.

 

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September 12, 2017

Dear Readers

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:44 am by autismmommytherapist

A few weeks ago I was fortunate enough to have a piece I wrote, a letter to Justin’s future caregiver in a group home, published on the Autism Speaks blog and highlighted in their social media. In it I wrote about my boy’s strengths, weaknesses, and his general adorableness (making that a word). I thanked his future caregivers for their patience and compassion, let them know how much he had been loved during my lifetime. I sent it to my contact at Autism Speaks with the hope that they would choose to publish it, as I think talking about the future for our more severely autistic kids is really important. The truth is though, I almost didn’t send it, and I’ll tell you why. You see, every single time I write about my son’s life after my death, which I believe will transpire in some sort of group home, I get the comments.

And I will tell you readers, some of them are not kindness personified.

I could tell you how this mean commentary about putting my son in a group home (which they never seem to get hasn’t happened yet, he’s only fourteen) ruins my day, or brings me to tears, or sends me downstairs for more chocolate (that last part is always true). But honestly, I’ve been writing this blog for seven years, and I’ve developed a thick skin. I’ve survived a comment about how I could possibly think to “out” my mildly autistic son by bringing him to an autism surfing event. I’ve been told I’m awful for predicting my non-verbal, severely autistic teenaged son will never marry or live independently (please, prove me wrong there, I’d be thrilled).

I was also asked recently if I’d ever heard of Temple Grandin and I shouldn’t give up hope my son wouldn’t eventually end up like her.

Okay, not mean, just incredibly annoying.

I can honestly tell you at this point I don’t care if perfect strangers choose to judge me about where my son will live after his parents’ deaths, and quite possibly, years before that. Most of the time the “judgers” don’t even have a severely autistic child, or are the parents of a “Waltonesque” family where their child’s seven siblings will share in taking care of their brother or sister after their parents’ demise.

And in that instance, I say more power to you, and you should count yourself fortunate. Many of us don’t have that pretty option. I can tell you I don’t.

My severely autistic son will never live with my youngest son, but not because he’s autistic too. Zach, like his brother, is doing beautifully out in the world, but I can you he’s already told me he wants to visit Justin but not live with him, and I know I need to respect his wishes. I’m sure some of you are thinking he’s young (ten) and will eventually change his mind, but I can tell you he won’t. He’s a bright boy and can tell his big brother is a lot of work, and doesn’t see how caring for him full-time will play into his desire to have five kids. Quite honestly, I don’t see how that would work either. We need to know where he is at any given moment in our house, and he needs frequent supervision. He is still on a potty schedule. He has gotten out of our house alone twice, so we need to constantly know his whereabouts.

Justin is a full-time gig. Logistically, I don’t see how living with Zach and the family he’s wanted since he was five would work.

For many of us parents of severely autistic children, a residence for them outside of our homes will eventually be our only option. While I respect everyone’s right to comment as they see fit on either my blog or the Autism Speaks blog, I’m hoping people will read this and think for a moment before they write something derisive about group homes. Truly, I’m not asking this for me. Rail away at me on my blog, get out your aggressions if you choose.

I’m not going anywhere.

But please, before you write a derogatory comment on the Autism Speaks blog about a parent’s choice of living arrangements for the child they desperately love and perhaps wish they could care for until he or she dies, stop and think. Deciding how your severely affected child will live out their last three or four decades without you is difficult (okay, excruciating) as it is. Someone reading a commentary on group home living may just be coming to that point where they can no longer care for their child. Perhaps they’re a single parent, or ill, or just too old to do it anymore. More than likely it is a heartwrenching decision, made with more than a few sleepless nights. Please, think before you write and don’t make it even more difficult for them.

We parents of autistic children need to spend our time building each other up, not breaking each other down.

Thank you.

 

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