January 29, 2019

National Council on Severe Autism

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:48 am by autismmommytherapist

A couple of weeks ago while procrastinating from what I should have been doing and scrolling through Facebook I saw a post that immediately caught my interest. It was from the National Council on Severe Autism (NCSA) which I had never heard of, and the title read “Suffering in Silence: The Dark Side of Autism.”

I actually put down my chocolate for better scrolling access, and I never put down my chocolate for anything.

I read the article by a mom out in California who spoke about an incident she had lived through with her eleven-year-old severely autistic son, one which culminated in the California Highway patrol pulling up behind her as she parked her car on the highway and hoped to quell the rage her son was displaying toward her so she could safely leave. Both her love and her fear for and of her son came through in every sentence, as well as her heartache in knowing that an attempt to take him ice skating could end this way.

These are the stories we do not see portrayed on tv on “The Good Doctor,” or in “Parenthood.” Yet, they exist. And they are tearing families apart.

People need to be made aware that even when autistic children receive the best of therapies, are in excellent school programs, and live with loving families, incidences of violence can occur.

And they, and their aftermath, can be devastating.

I have a fifteen-year-old severely autistic son with accompanying OCD, tics, and intellectual disability. There is no doubt in my mind (or even my husband’s) that of the few people in his inner circle that he loves, he is most attached to me. This is a child who at least once a day kisses me even when he doesn’t want anything and hugs me on a frequent basis. His level of outward affection has slowed somewhat since he became a teen, which I figure is appropriate for his age, but still we have a connection that through insomnia, aggression, refusing to eat, soul-sucking OCD, and this last year a terrible movement disorder that has since greatly resolved and has been diagnosed as tics, has remained true and strong.

And yet, despite this profound connection, we have survived our own aggressive incidences, some of which I have written about on my blog. Many I haven’t. It’s not because I’m embarrassed. It’s because I want the world to see him as I do- a loving, kind-hearted, intrinsically happy almost-man, despite his challenges.

I have no doubt that if I wrote more about the times I feared for his safety and for mine, people’s opinion of him would change. More than sharing with the world, I don’t ever want that to happen. I love this kid more than life. I want him to have as many options open to him as the world will provide. Thankfully we have moved beyond the period where it seemed like he was in constant meltdown, but I know many families are not so fortunate despite trying desperately to help their child.

Their stories need to be told too.

I’ve since been following the NCSA on Facebook. I saw within a week the backlash had started which I knew would happen, despite their mission statement proclaiming their desire in “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders,” which seems to me simply like a beneficial, and incredibly necessary thing to do.

My eldest son is not like the protagonist on “The Good Doctor.” He’s not like my other son with high-functioning autism. And yet the truth is, with two sons on opposite sides of the spectrum, I am thrilled when either side is represented. Seeing an individual with autism portrayed as brilliant on a top-rated show can only be beneficial to my youngest son, even if his autism doesn’t manifest in any way like the genius of Shaun Murphy.

But we need to share our stories of darkness too, in the hopes that awareness will result in better services for those on the severe side of the spectrum, those who cannot speak for themselves, those who require lifetime, 24/7 care. We need an organization like the National Council on Severe Autism to call attention to an underserved segment of the autism population, the one that nobody writes the “feel-good” stories about. The one that makes some of us uncomfortable.

The one perhaps impossible to capture on a television show.

I for one am thrilled with the creation of the NCSA, and wish them well. I am actively for any organization which can help my kids, and hopefully with time we will see the National Council on Severe Autism as major contributors in the goal of realizing safe, happy and productive lives for those severely affected.

We can only hope.

 

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January 14, 2019

Taking a Chance

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:50 am by autismmommytherapist

“He sounds like such a man,” my friend said after hearing some deep guttural stims over the phone as we caught up on each other’s lives and vented about our extra holiday pounds. “I know, he has the beginnings of a mustache” I replied, thinking happily that at least this would be my husband’s domain.

I have my limits when it comes to child care.

The truth is, I’ve been in a little bit of denial over my eldest son’s (who has severe autism, OCD and tics) impending manhood, in part because he is now bigger than I am, which can be problematic for a host of reasons.

The other reason is that each step closer to adulthood is one step closer to my not being here for him, and that’s just not a place I like to visit often.

Trust me, it’s not a pretty place.

Despite my reluctance to contemplate this the reality is that in five short years my son will be twenty-one, and will age out of his school entitlement.

I’m not sure who will be the most unhappy about this. I believe it will be a tie.

I’ve heard the post twenty-one autism world described as a “cliff,” but to tell you the truth I’ve seen my friends with older kids on the spectrum make it work for them, so to me, there’s still hope.

Of course the next five to seven years is when the “autism bubble” bursts, so not as sure we’ll be as successful.

The truth is I’ve got to start thinking about what the landscape of Justin’s life will look like, whether I want to or not. I’m hoping it includes a day program. It would be lovely if he worked a few hours a week or volunteered somewhere too. And one day, eventually, he will reside somewhere other than his mom, dad and his sibling.

His brother has made it clear he’s not taking him on full-time. And while I get that he’s eleven and that taking care of his severely autistic brother doesn’t sound as fun as time on Xbox, I’m pretty sure his opinion won’t change with maturity.

Call it a mother’s instinct.

Someday, Justin will live in some type of group home placement, will have to relinquish his routine and the ocean mural on the bedroom wall of the only house he’ll ever remember, and make his way in a group living situation.

I have read and spoken to so many parents who are keeping their kids until the very last second.

I have read and spoken to so many parents who want their kids in a residential placement as soon as possible both for their ability to be as independent as possible, and for their own freedom as well.

I don’t believe the first group are martyrs.

I don’t believe the second group are callous parents.

I think in some cases it’s easy to see what’s best for both the adult child, and the parents.

I think in some cases it’s near impossible.

Impossible for us because I know in my heart he wouldn’t want to change a thing over his eighty-something years, and that is just not an option.

Despite the fact that I’ve been told my choices (short of winning the big lottery) are ridiculously limited, I know I have to start thinking about these issues and how best I can prepare Justin for such a tremendous move.

Given that he’s only spent about a dozen nights out of his own bed in the last ten years (yay Disney!) I’m pretty sure I need to step up my game and address this first.

Since one of the biggest challenges for Justin living away from us will be sleeping in a new environment, I know I’ve got to create other opportunities for him. A lovely fellow autism mommy mentioned a local camp that does both day camp and sleepovers, and trusts them implicitly.

I can tell you when we spoke about it my heart both lurched and soared simultaneously. Would he sleep at all? Would he find it even the tiniest bit fun? Would I get to go out?

Would he understand that I’d come back for him?

To say that I’m not sure how this will go would be a massive understatement, but I’ve decided I’ve got to give it a try, and for as long as the camp is willing, keep trying. I’ve got to expand his horizons. He has to try new experiences that will set him up for success in adulthood.

He’s got to see that as long as I’m able, I’ll always see him again.

Summer camp is just a few short months away, but it will be here before we know it. Wish us luck. And if you’re like me, in a situation where you’re child’s adulthood is on the horizon and you want to start preparing him or her, now’s the time to push the envelope. Take some risks. See how far you can stretch them.

Who knows. Maybe we’ll all be happily surprised.

My fingers are crossed.

 

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September 24, 2018

Be Good to Yourself

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:33 am by autismmommytherapist

I am a glass half full girl (most of the time).

I try to adhere to that perspective when I can, but I admit I’m not always successful when one of my kids is suffering. This summer we had a dual whammy of a disheartening diagnosis for my son’s movement disorder, coupled with the knowledge that his affliction was from a medication we put him on years ago.

Not good times.

For two months I was just not my usual optimistic self. Along with this movement disorder came regression in several areas of his life, making him very difficult to deal with, plus a lack of appetite that made him drop twenty pounds over the course of the season, this from a kid who always wanted to eat. Most disturbing to me however was a notable absence of joy, limited laughs and smiles from a kid who worked so hard all these years to break through to his core, his generally happy self. I mourned that former self. And the guilt of thinking his father and I “did” this to him from a medication he’d taken was devastating.

Of course, if you read last week’s blog, we took him to an expert at UPenn in what he supposedly had, and he has tics/stereotopy instead, not from medication, possibly from puberty.

And possibly just because he’s severely autistic.

I’m still distraught that he has yet one more challenge to live with in his life. I thought severe autism and OCD were enough (apparently not!), but we have a course of treatment for him and have seen some improvement, so his father and I are guardedly optimistic. I am relieved this isn’t from a medication, and hopeful that although we won’t be able to eradicate the tics we can hopefully ameliorate their significance in his life.

We’ve already seen a few smiles break through in the last few weeks. They are glorious to behold.

I beat myself up throughout the entire summer, even though the medication we put him on years ago was absolutely necessary at the time. It helped him stay in his private school. It maintained peace and a healthy household. It made him less irritable, more able to contain his frustrations with life and not take them out on his family or teachers. I know we made the right decision all those years ago.

And yet, my brain kept saying to me we should have made a different choice, despite every family member, personnel from his school, and BCBA we’ve known since he was a toddler telling us differently.

Years ago I made a promise to myself that if we made a decision that ended up being a mistake, I wouldn’t beat myself up over it. Autism doesn’t come with a handbook; sometimes the options surrounding an issue are just different shades of terrible. Couple that with knowing we’re making all his choices for him for fifty years, and everyone is bound to make some mistakes.

And it is absolutely critical to your mental health, the welfare of your autistic child, and your other children that if you make the wrong choice, you forgive yourself.

I didn’t hold to my promise, the promise I’d remained faithful to for years. I’m back to it now, am able to think more clearly and focus on helping my boy, not on how I thought we’d inadvertently hurt him. So many of us who dwell in the world of severe disability are so hard on ourselves, second guessing every decision, regretting every wrong turn made.

And I’m telling you this as a fifteen year veteran of the “autism” life- you simply must stop.

Be kind to yourself. You can only do the best you can at the time in every situation you encounter. Remember that. Learn from your mistakes. Know that this life is sometimes impossible, and all you can do is try to give your child, and your family, the best life possible.

The most important thing is you have to be whole and healthy for your child.

And you can only do that if you’re gentle with yourself.

 

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September 21, 2018

I’m Back

Posted in Life's Little Moments, My Take on Autism tagged , , , at 8:54 am by autismmommytherapist

First of all readers, I apologize.

I always find it difficult to write in the summer, what with the driving to the twelve camps and the beach and the playdates, all of which I’m grateful my youngest can participate in. But quite honestly this summer was both so wonderful for Zach and so brutal for Justin that my heart wasn’t into writing about it.

I’m slowly working my way back.

Some things have changed since I last wrote in July, and some of have remained the same. We think we have a new diagnosis (and hopefully his last, a story for another time) of tics/stereotopy, a condition he’ll probably always have, but in theory can be ameliorated with treatment. We are hopefully going to get in to see one more doctor in November who actually sees adolescents (a miracle!) to confirm the diagnosis and treatment plan, and we will continue to work with his neurologist.

Over the last eleven months we’ve had consults with seven different doctors ranging from Israel to CHOP, Kennedy Krieger to UPenn. We’ve had literally seven different potential diagnoses.

It’s been confusing to say the least.

Of course, just like with autism, there’s no blood test to confirm any of this, so we’re going on instinct here and believe the last doctor we saw is right.

I hope he’s right.

I may know more in November. At this point we are just hoping for closure and a corroboration of the plan we received a few weeks ago.

And of course, we’re hoping to help our boy.

Quite honestly, this has been awful for him. I thought having severe autism and OCD were challenging enough, but apparently the universe had other plans for him, plans which have completely pissed me off. We’ve seen regression in some of his life skills, his speech, and his capacity for joy, which has always sustained him. I’m hoping with time and treatment we can at least bring some of these things back to him.

I just want back “our normal.”

I will be writing more in the weeks to come. On the bright side, my youngest loves middle school (who knew anyone could love middle school) and is doing fabulously. My anxiety this summer helped facilitate some weight loss (woohoo!) that hopefully my new calmer state will not undue. Justin has been calmer, and there are still glimpses of our happy boy.

Always have to be grateful for something.

And for anyone still reading this blog, I’m grateful for you too.

 

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July 31, 2018

Patience

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:25 am by autismmommytherapist

Patience is a virtue I do not have in spades.

I say this and laugh, because instead of making list-oriented New Year’s Resolutions this year, I simply asked for patience, happiness and peace. Last year (unfortunately) like this year was very challenging, and really, I was just going for baseline.

It turns out I’m a work in progress.

This summer I’ve seen a lot of ups and downs with our boy. At this point, to tell you the truth, we’re not even sure what he has anymore. We have a consult with his neurologist next week, there may be answers,, there may not. Justin seems to make progress, then slips again. It is beyond frustrating not knowing for sure what is going on not because I need a label, but because I don’t know how to treat it.

Still, there are some things I am immensely grateful for.

His school has been incredibly patient with all his changes, and once again I am beyond thankful that we made the decision to put him in a private placement all those years ago. His school truly is his second home. We are lucky.

To my immense relief we are still able to take him places, places he’s loved since we moved here when he was a toddler. I’ve been worried we’d lose that ability to take him out, which has meant so much to him and to me over the years.

Finally, we’ve seen some of his intrinsic joy return. This aspect of whatever he has has been the most difficult part for me. My boy, despite severe autism and OCD and this new challenge, has always been happy in his core. To see glimpses and periods where this child has returned has meant, well, everything.

Psychologically I know whatever this new challenge is his progress will not be linear. I don’t honestly know where we’ll be tomorrow, next week, or a few months from now. I guess the truth is none of us knows this, but it is particularly difficult for me because this is my child’s life, the one we’ve sweat blood and tears for for fifteen years to make it good for him.

I, not so simply, have to wait.

And I sincerely hope the universe grants me patience.

 

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May 23, 2018

In the Moment

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:41 am by autismmommytherapist

As you speedily unwrap and liberate the toy from its imprisoning box your smile bursts forth followed by a deep-throated, fifteen-year-old chuckle (your laugh slays me every time), and your face simply radiates joy. This toy’s predecessor went to “toy heaven” a few months ago after serving us well for thirteen years, had been one of your favorites on and off for over a decade. Your dad diligently found it on eBay which was a miracle, and clearly it was well worth his effort. You follow up this toy with two books you haven’t owned in years because you’ve destroyed the poor things too many times, but since it’s been a while we thought to give you another chance. You quickly turn to the back pages of each and light up Eric Carle’s firefly and let his crickets sing, and once again I revel in your giggle, your ability to live totally in the moment at hand.

Mommy could learn a lesson or two from you.

You are fifteen. You are not talking about driving (thank God!), or a new cell phone, or why your iPad is hopelessly out-of-date. You are definitely thinking about girls as evidenced by your frequent pointing to a pretty babysitter-of-yore in a photo album, a huge grin making it very clear you would like to see her again. You still love your Eric Carle books, Baby Einstein videos, and every once in a while when our guard is down we buy you an old Wiggles DVD that has been (intentionally) lost in the shuffle. You were joyous at your party, even more so the day after when opening your presents from your parents (I believe in stretching out birthdays as long as possible). You were, in those moments, profoundly happy.

Truth be told, I cling to these moments when the going gets tough, and I’m always greedy for more.

Sometimes, the beautiful boy who made me a mom is extremely difficult to deal with. My boy has severe autism, OCD, and lately a diagnosis of catatonia which honestly threw his parents for a loop (we knew puberty would bring something else to the table, we just didn’t think it would be that). We’ve been struggling lately with bedtime which may purely be a function of advancing age, or could be something else. Since the catatonia diagnosis we’ve had regression in several areas of development, which is disheartening to say the least. To tell the truth we’ve gotten used to the stimming and the OCD over the years- watching him disappear in a catatonia episode has been distressing to say the least. We are so grateful with the proper diagnosis he has improved, although I’m told this will never go away.

Kind of like autism. We’re familiar.

Storing up these moments of joy whenever possible has been a trick I’ve used over the years, one that has helped me cope immeasurably. When things get difficult chez McCafferty and I get a moment to breathe I try to recall these times, his elation, the absence of dread. I have found over the years I’ve dealt in dread as much as I’ve dealt in joy with Justin, and I am diligently trying to change that (it’s even one of my New Year’s Eve resolutions!). Stockpiling those moments of joy and trotting them out in trying times restores my sanity, because it reminds me of this- everything with Justin is cyclical. Yes, we are often putting out fires, but there is an ebb and flow to the difficult times, and to date, peace has always returned.

May it always continue to do so.

Recently I celebrated my anniversary, my son’s birthday, and Mother’s Day (yes, I am quite tired). I’ve got good memories for the “bank,” and a reminder to myself that when things fall apart, and they invariably well, they will come together once again. Eventually there will be peace.

And when there is, I plan on being in the moment enough to enjoy it.

 

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May 7, 2018

The Space Between

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 10:05 am by autismmommytherapist

Dear Moms,

If you’re reading this in your voluminous amounts of spare time, perhaps your son has just been diagnosed at the tender age of two and you’re overwhelmed by where to go next. Maybe your teenaged daughter, whom everyone assured you was just shy, is now sporting the ASD label. Perhaps after years of therapy and (literally) your blood, sweat and tears you are realizing your little boy is destined for the more severe end of the spectrum, despite all your efforts. Maybe your son is aging out of his school entitlement, and your world is now consumed with SSI and guardianship and praying like hell that day program down the road will not only take him so you can work, but that your boy be willing to stay. Perhaps your child has just hit puberty- enough said.

A lot of “maybes” here, but I’m certain of one thing- you are very, very tired.

Maybe you’re not going through a major milestone, but instead trying to figure out how to get him to eat, to sleep, to leave the house without screaming, to stop pinching you every time you need him to make a transition. Perhaps you’re trying to figure out how you can convince a sitter to stay with your five-year-old so you and your significant other can remember why you got married in the first place. Maybe on top of autism and OCD and anxiety your girl has just received another co-morbid diagnosis, and you’re trying and failing to summon up the strength to educate yourself once again on yet another disorder.

Perhaps you just want to scream every time someone tells you they don’t know how you do it, as if you had a choice.

Fifteen years ago this week my husband and I began our own “autism rollercoaster” when our beautiful son Justin was born, a much-wanted and longed for baby. I would start to have concerns about his development when he was just six months old (he hit his milestones but spun everything in sight), would have those concerns validated at seventeen months when he received his PDD diagnosis which would morph a few months later into a plain old ASD label. Five years later our eighteen-month-old son, who unlike his brother had developed typically until then, would regress before our eyes after two back-to-back illnesses, losing his speech, developing a rash all over his body, and most significantly losing the very spark that made him who he was. Over the last decade-and-a-half we have seen our boys labeled with autism, OCD, ADHD, and most recently for our eldest, catatonia. We have endured insomnia, refusals to eat, binge eating, anxiety, and aggression.

Here, it has not always been “good times.”

Having been in the trenches so to speak for the last decade-and-a-half I will share with you that at times I have been depressed because my boys suffered, have been angry at their suffering, and riddled with anxiety over whether I’d ever figure out how to help them be happy. For years at a time I put my own needs on the back burner, living from one potty training incident to the next, measuring my happiness based on how much each child had slept the night before. I had given up my much-loved career when our eldest was diagnosed, and subsequently the boys became “my job.” Quite honestly, their needs consumed me.

I lost myself.

It took me many years to realize that sometimes I needed to put my needs first.

Finally, one day I realized that with both boys our challenges came in cycles. Often we would have periods where things were calm, the boys were happy, and our home life resembled some sort of normalcy that I’d never thought we’d achieve. Of course, you’d think I’d be able to revel in those periods, “the space between” I’d come to call them.

Often, I didn’t. I’d be filled with dread waiting for the “other shoe.”

What I eventually realized was this. This autism gig was here to stay. These cycles would be my constant companions until my dying breath, which hopefully was many, many decades away. No matter how educated I was, how diligent I was, and how good a mother I was, I could not change this incontrovertible fact.

The only thing I could change was me.

It’s been about three or four years since I stopped “dealing in dread.” When one of my kids is suffering, I admit I am not good at compartmentalizing their suffering- I don’t think I ever will be. What I have learned to do is in those calm, quiet periods (and I can’t promise you, but I believe you will have them) is to grab onto life with a tenacious grasp, to take care of myself, to actually have fun. I make those doctor appointments I’ve been putting off for six months. I have lunch with a friend I haven’t seen in a year. I troll everyone I know to help me find a sitter competent enough to stay with my boys so my husband and I can get some relief.

As much as I can, whenever I can, I try to relegate anxiety over the boys’ collective happiness to a shelf somewhere in the remote recesses of my brain. I do this for them, because a happy mom is a more competent mom, and they need me to be that for them.

But I do this for me as well, because I deserve to have a life too.

So this Mother’s Day, and every single day that you possibly can, carve out some time that’s just for you, for your happiness. Perhaps it’s a night out with the girls. Maybe it’s fifteen minutes in the tub while your husband handles the kids.

Maybe it’s just a really good and well-deserved glass of wine in a quiet place. Chocolate helps too.

Try, as much as you can, to find happiness in the space between.

 

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March 20, 2017

Just Get Out

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 10:22 am by autismmommytherapist

My husband Jeff and I have two sons, an almost fourteen-year-old and a ten-year-old, both with autism. My eldest is on the more severe end of the spectrum, and also has a diagnosis of OCD. My youngest is on the milder end, and has a secondary diagnosis of ADHD. For the most part, they are both happy, successful in school, and the two most loving children any parent could ask to raise. At this point you may be rolling your eyes, or maybe you want to know our secret. Friend, I’m going to tell you. Ready for it?

It’s simply this- get them out.

If you’re reading this with an autistic toddler clinging to your leg because you have the audacity to want to put him in the car for a ride to the park, you may not feel really receptive to this advice. I know, and I get it- I was you twelve years ago. The first year Justin screamed any time we put him in the car (turns out he hates facing backwards, at least that issue was solved on his first birthday,) so outings were fraught with trauma before we even went anywhere. The only time he didn’t cry when we left the house was when I put him in his stroller and took him for a walk, which in Virginia meant several months in summer or winter where that was impossible. I remember thinking at one point that a person who weighed less than my left thigh was keeping me prisoner in my own home.

Yup, the left one’s bigger than the right. Must be a running thing.

After a period of time where I truly felt I’d entered a witness protection program I decided our strict quarantine had to go, and we began our ventures out. I chose our local mall as our battle ground because we could ostensibly go there year round, and at the very least I could attempt to get a drink at Starbucks.

I have my priorities.

At first Justin hated every aspect of our “stimulate the economy” excursions. Knowing this, I started small. The first time we went I just drove him to the parking lot, parked, then went home. The next time we made it to the stroller, and to the closest mall entrance. The next time, we made it inside for one grand loop of the first floor.

Eventually we even conquered elevators. It was a momentous day.

The mall taught me a lesson I applied to many more situations with Justin, and eventually with my younger son Zach when he was diagnosed. Something in me knew that the more times I got out with them when they were younger, the more they’d get used to trying new things. The first time Justin sat on a horse he whined and protested the entire fifteen minutes around the ring. Something inside me told me to pursue this, and while the first month of lessons were hell, nine years later his half hour on a horse is his favorite thing of the week.

It’s one of my favorite times too. It feels like victory.

Of course, exposing my boys to different opportunities is far from the only reason they’re mostly happy in their environments, and usually open to trying new things. Both boys have had years of special education instruction, occupational therapy, physical therapy, and speech therapy. My eldest has had a private ABA tutor since he left Early Intervention. My youngest is on the “autism diet,” which we think helped him immeasurably. My husband and I have tried our best (and not always succeeded) to be patient with them, and we’ve had help from family and friends.

It takes several villages to raise two autistic children.

There have been many factors that contributed to who they are today, but I truly feel that getting them out young ans conditioning them to the community is one of the biggest reasons they’re mostly at peace with themselves and the world at large. It wasn’t always easy. I have tiny scars on my shoulders where Justin’s teeth expressed their displeasure at having to wait on line at the boardwalk. I distinctly remember packing a young Zach up one morning five minutes after we’d made it to the beach because a fly landed on his foot, and he became hysterical.

All good times.

But we perservered, and now my sons have many more options on their life menus. It’s still difficult to keep my son at a relative’s house for more than two hours- we often end a visit with my boy unceremoniously dumping my purse on my lap so I’ll take him home. He has severe autism, so sometimes there are limits to what we can do. I’ll admit I held my breath when we took him to Disney four years ago, but darned if the kid didn’t make it almost eight hours each day in the park.

Given how expensive those tickets are, I can honestly say those days really were magical.

Whether your kid has just gotten a diagnosis or you’re a few years in, don’t give up on getting him or her out in the world. Ask for help anywhere you think you can get it. If a random neighbor offers assistance, have her accompany you somewhere so you have an extra pair of hands. Even if the outing is a disaster wait a while and try again- I can’t tell you how many times I attempted a trip with Justin that at first made me long for a glass of wine but eventually ended in triumph. Make sure you have a plan B and C for every time you venture out, and if necessary, try your trip in segments so that your child becomes accustomed to where you’re going.

Don’t give up.

Just get out.

 

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January 9, 2017

A Story, a Song, and a Kiss

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 2:45 pm by autismmommytherapist

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He stands hesitantly at the door, my littlest love, watching as Justin and I rock gently back and forth on the glider that serves as our throne as I read his teenaged brother one of his beloved Eric Carle books.  I see him mid-sentence, and figuring he wants more pretzels or juice or something consumable I pause and ask him what he wants.  “I want to say goodnight to Justin” he says and enters the room, insinuating himself on my one available thigh. My heart both clutches and expands, and I read on about the miraculous Mr. Seahorse as he gestates what looks to be like a thousand eggs for his wife.

I’ve always loved Eric Carle.

As Zach settles on my lap I look swiftly at Justin to see how he’s taken this alteration in his routine, and a huge smile graces his face, and I relax. I want this to go well because, well, they’re brothers, and although I’ve tried hard over the years to forge a closeness between them it’s been difficult as they don’t share the same interests, and in later years Zach hasn’t really wanted to try.

When the boys were very little, before Zach’s regression, my youngest spent a great deal of time trying to get his brother’s attention.  He was always pulling on Justin’s shirt, calling to him from across the room, and generally trying to get noticed.  It was easier to contrive moments of connection back then; I could put both of them in Zach’s crib and Zach would always take Justin’s hand (and Justin would let him), and I know that satisfied Zach’s desire to be seen.

Then in the space of a few weeks our baby lost most of his speech, developed a rash all over his body, and the light disappeared from his eyes.  I can tell you I wasn’t worried at that point about sibling relations one bit.

Over the course of the next few months we changed Zach’s diet and started Early Intervention services as we had with his brother, and slowly our son emerged, altered, but once again speaking, and most importantly, happy.  As we navigated our way a second time through his current services and prepared for the myriad of hoops we’d have to jump through to get him a special education placement I put brotherly bonding on the back burner, but never pushed it entirely from my mind.

Years passed, and Justin became more and more restricted in his interests to the same degree that Zach’s world continued to widen, and I saw more and more that opportunities for them to interact became fewer and far between.  Justin liked movies on his DVD player, but only the same thirty seconds over and over to Zach’s desire for a full length feature.  Beach excursions became work as I battled to engage Justin’s interest so we could last an hour, and eventually I stopped taking them together as leaving early didn’t seem fair to my youngest beach bum.  My eldest wasn’t interested in any of the computer games that so enthralled our youngest, and eventually I let this dream go as I focused on getting them both to sleep, eat anything other than carbs, and most importantly, (thank God!) potty train.

When it comes to autism, I have my priorities.

Over the years Zach would occasionally say he wished he could play with his brother (then in the same breath would ask for a younger sibling, at which point I would emphatically tell him the store was closed). Zach made friends both within and without his school, and his desire for an in-residence playmate waned.  He was okay with helping out with Justin on occasion, but that desire for connection seemed to have disappeared.

Then last night he told me he wanted to start saying goodnight to Justin, and the window opened again.

My eldest son can read, and in the past  year or so has been gracing us with words here and there.  In an attempt to elicit more speech from him I’ve been letting him fill in the last word on every page of our night’s literature, and asking him to fill in the last word of the three songs we share together every evening; “Silent Night”, “Over the Rainbow” and his “special song”, which I made up in desperation to get him to stop crying when he was six weeks old.

It didn’t work, but the song stuck.

We went through our routine, and Justin loved the change. He’d giggle every time we pointed at him to speak, and gave his brother complete and uninterrupted eye contact the entire time. Zach ate it up too, chastising me when I forgot to leave off a word in one line of lyric, reveling in his brother’s attentions. As the last notes of “Silent Night” drifted off I stood up and Zach slipped into my space, and as I went to return our book to his father’s study something stopped me, and I turned around.

All on his own, my son who initiates affection only with me and his father, leaned in close to Zach so he could get his “forehead kiss”.  Then he clasped Zach’s hands with his, and gently grazed them with his lips.

Justin immediately began his maneuvers around the room with a delighted smile, and Zach gazed at me in wonder.  “He loves you, Zach” I said and my youngest gave me the briefest of nods, a kiss on the shoulder, and bounded out of the room for his pretzels.

My son has his priorities too.

There are heartbreaking moments with autism.  My son’s dual diagnosis of OCD can be overwhelming at times, and although I believe we’ve finally found a remedy the memories of the past two years are always with us, both our son’s struggles, and ours.  There are times we can’t understand him even when he uses his device, and his frustration and my feeling of failure can be difficult to bear. I can never reconcile with the fact I’ll leave Justin on this earth for forty years without me, knowing I’ll have to trust in his little brother to oversee his health, safety, and hopefully, his continued happiness.

But there are these moments with autism, even severe autism, moments of such stunning clarity and grace that I know I have to push myself to be present so I don’t miss even one.  My youngest is taking an interest in his brother again, and I know I will build on this moment, stretch it as far as it will go, hope for their bond to be strengthened and unbreakable as the years and decades pass. It is up to me to grab these opportunities as they emerge, but truly it is up to them to forge what they will, and ultimately I have to accept that too.

But in the meantime, there is a song, a story, and a kiss.  There is a moment of profound love.

And for once, I am at peace.

 

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November 14, 2016

My Tired Soul

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

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Today, my very soul is tired.

It’s 9:43 on the first day of NJEA (or winter break appetizer as I like to call it), and already I’m exhausted and simply heartbroken as I watch Justin suffer. I should preface this with the OCD we’d battled off and on for the past year-and-a-half had subsided greatly over the past three months with a medication change, and for a time life was much easier chez McCafferty. Justin was back to his happy self, and after three months of improvement with no setbacks brought us a more harmonious household, I let down my guard and actually started to think that things might go back to our “normal.”

It’s my fault. I got cocky with my “hope thing.” Shame on me.

Things were pretty good until around Halloween, when my son’s obsession with moving, hiding, and trying to defy gravity with the way he attempts to angle objects kicked back in. Jeff and I made a thousand excuses as to why this day was just an anomaly (“he’s hungry/tired/hormonal/it’s a full moon/it’s an election year), but after a few days we had to acknowledge the OCD was back, and began damage control.

Fortunately Justin’s neuroped responds to emails (which is why I’ll drive an hour-and-a-half to see him) and we quickly came up with a plan which required of course ten thousand phone calls (only a slight exaggeration) and my own perseveration that I’d forget one part of the plan. We managed to accomplish adding a dose at school (which initially had made him exhausted and spacey, so fingers were crossed this time that since he’s acclimated to the drug it would be different), and then, as always with med changes, we sat back and waited.

Not very patiently I might add.

In case you’re thinking OCD might not really be all that bad compared to autism, we actually find that this is the more challenging in some ways of Justin’s two diagnoses. When not immersed in the disorder Justin is one happy guy, excited to watch movies and play on our computer while home. He’s thrilled to leave the house even for a short errand, and one of his biggest demands is for kisses and hugs throughout the day. Frankly, when in this mode, he is completely delightful.

When his OCD has reared its ugly head, nothing in our house remains sacred. This morning I had a ten minute battle with him about why he couldn’t turn a five foot lamp upside down and place it in the middle of our kitchen. For some reason our lazy boy chair had to be upside too or things wouldn’t be right with our world, and half of our kitchen drainer has disappeared.

It was about two hours before I could even take a potty break. When he’s like this, his care is the same as watching a toddler. The problem is, this toddler is ninety pounds and almost as tall as I am and not the least bit happy when I interfere.

In the midst of all this chaos while I’m ignoring my other son and the twelve loads of laundry I should be folding I still try to summon my happy place, reminding myself of how much we’ve conquered over the years, that the med did work for a while and maybe he just needs more, and when I’m really desperate, that it’s only seventy-two hours before he returns to school and seven until I can reasonably have a glass of wine.

Yup, today I went there.

Of course all the time I’m trying to dwell in “happy land” that pernicious voice of doom is also expressing its needs, badgering me with “more meds might not help/ this may not just be a puberty thing/ when you’re dead no one will put up with this in a group home,” which of course propels me to the fridge (it being before 5:00) to my chocolate stash.

Really, Justin needs to work through this so I don’t gain twenty pounds. I have my priorities.

The truth is, today I’m tired, my people. As fifty nears I find I’m sloughing off that youthful enthusiasm I had about conquering new hurdles (it’s a teacher thing, I couldn’t help myself), and honestly, I just want this crap to stop. I want the objects in my house to remain where they are. I want to be able to help Zach figure out the crazy way they do math these days and not be rescuing said objects from certain gravitational doom. I want to be able to find my car keys. I’d like to solve the mystery of my missing drainer.

Hell, I’d give someone a million bucks just to tell me why the damn drainer.

And as I head over to rescue our desk lamp from being thrown behind our couch, I know all I can do is wait.

 

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