January 9, 2017
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
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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November 7, 2016
I struggle out of sleep, not knowing what woke me up but for once knowing it’s not my own body. I lie still for a few moments, and then I hear a thud, and I’m instantly awake and throwing back the covers.
Justin’s OCD is back. He’s quite loudly rearranging his room at 6:10 in the morning, and there aren’t words to explain how much I don’t want his brother up at this hour.
That means I have to move fast. His rocking chair is next.
My eldest son has a dual diagnosis of autism and OCD. The only reason he really has a secondary diagnosis is due to the extreme level of perseveration he will sometimes go to, an intensity which transcends his primary diagnosis. Justin’s OCD has manifested in many diverse and interesting ways. Sometimes it’s rearranging furniture, which has at times improved the look of a room. During one particularly gruesome period he hid things, including shoes and my purse, which half the time I didn’t even know they were missing until I desperately needed them (at almost fifty I depend upon my visual cues). This last arc, which has lasted a year-and-a-half despite behavioral interventions and tinkering with his medications, was relieved for a few months when we seemed to hit the right one, and our happy boy came back.
And unfortunately, his penchant for angling and arranging has returned in half force.
The first piece of good news is that we have loads of room to increase his new medication, and since it’s been effective for the last few months I have hope that this change will help him. In case you’re thinking that moving a few things doesn’t sound so bad, I have to share with you that truly, it is. Justin not only wants to rearrange things, he wants to angle items in such a way as to defy gravity, and when he can’t transcend the laws of physics he becomes very upset and agitated, refusing to engage in more acceptable pursuits (or hell, sometimes even get on the bus).
And in those moments, I am pissed as hell at autism or OCD or whatever neurological disconnect is causing my boy so much pain.
The second piece of good news relates to me, or specifically how I am handling this unwelcome resurgence. Even a few years ago I would have despaired that we wouldn’t be able to help him, been sent to the abyss where he suffers and hell, frankly we all suffer along with him.
But over the last few years as I’ve seen problem after problem rectified with Justin, I’ve learned how to keep a little piece of hope alive.
Over the past thirteen years we’ve conquered potty training and insomnia. We’ve gotten him out of a hunger strike, and later on taught him to like lettuce (my greatest lifetime achievement) and reduced his caloric intake so he could lose a few of those carb pounds. We’ve (mostly) quelled his aggression, and worked out ways to stay at relatives’ houses and outing for more than forty-two consecutive minutes.
We’ve been quite busy chez McCafferty.
And what I’m able to do now that I wasn’t able to do a few years ago is draw upon those accomplishments and remember that many things are not permanent with Justin, that just like typically developing children he will grow out of some things (learning to sleep remains my personal favorite) and do it in his own sweet time.
This optimism doesn’t necessarily mean we’ll be able to conquer this latest challenge with our boy. Increasing the medication might not work, or the side effects of a higher dose might counteract the benefits.
As they say, it ain’t over til it’s over.
But something I’ve learned over the past decade plus with autism (and perhaps parenting in general) is that a good portion of the battle is my attitude. If I can summon up some modicum of optimism (and I will share with you all that this doesn’t happened in the middle of the night, I have my limits) I’m often more open to finding strategies to help my kids, and even if those strategies don’t end the issue, they can often alleviate it.
And frankly, being in a bad mood all the time just sucks. This is the happier option.
Know that I have my moments and everything I’ve just written gets thrown out the window on a day where I struggle to get my son out of his room so he can (thank you God!) go to school, go to the bathroom, or eat. In those moments I try to summon my “teacher patience” which is often more powerful than my “parent patience,” take a deep breath, and remind myself that he’s never completely refused to get on the bus despite whatever feng shui endeavor he’s attempting.
In other words, I’ve gotten really good over the years at deep breathing.
And my message for anyone just starting out with an autism diagnosis, or anyone at a particularly difficult juncture with the disorder, just remember this. No one can promise you it will get better. But the resources out there for helping our kids are so much better than they were even a decade ago that it’s worth a shot at carrying that hope with you for a while. And while you’re trying to help your kid, make sure you take care of yourself too.
I’ll say it again. Make sure you take care of yourself too. No one will do it for you. Try to recall what you’ve already conquered. Ask for help from anyone and everyone. Don’t give up.
And remember to breathe.
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October 31, 2016
Twelve years ago this month I walked into our pediatrician’s office with my then seventeen-month-old son in tow hoping for a prescription for reflux; I walked out shaking, crushed by our doctor’s callousness, and clutching four misstapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand, and left the room.
He wasn’t our pediatrician much longer.
I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription which would at least let me help him with something that I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.
As they say on “Game of Thrones,” I knew nothing Kim McCafferty.
The year was 2004, when Jenny McCarthy and “recovery” were hot in autism land. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.
There were parents claiming the only positive outcome of this diagnosis could be a cure that led to recovery.
There were autistic advocates and parents of autistic children claiming an alternative neurology cannot, nor should not, be cured.
There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk, and should always be employed.
There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.
There were parents telling me not to vaccinate.
There were physicians telling me I’d better vaccinate.
There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.
There were teachers sharing with me that despite the push for it mainstreaming might not be the most important goal regarding my son’s future education.
As I look over my list, I realize not all that much has changed in a dozen years.
I did my best by Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders, and his religious adherence to having things a certain way that would ultimately earn him a dual diagnosis of OCD and autism. My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.
Ultimately what I clung to to get through it all were my choices regarding Justin’s treatment, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.
I displayed my own rigid behavior regarding that information. According to studies I’d read sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were severely delayed. I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.
And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions I would have done my son far more harm than good.
After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!) I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then twenty-two-month old might actually end up with a way to communicate his needs other than by mostly crying.
If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.
I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of three I wanted him to have opportunities to engage with neurotypical peers because I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.
Okay, that last is still an important goal.
After four years in two different public school districts it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight week summer program.
I know, we’re spoiled.
I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.
And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”
But as with many things in life I’m still a work in progress, and keeping an open mind is one goal I plan to keep.
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July 25, 2016
I hold you as you sob, my arms wrapped tightly around your torso, as behind me your father holds your hands so you won’t pinch or scratch me in your grief. Tears are welling up in my eyes with you, because I know what you so desperately want to do, and I can’t give in. You see, your OCD or your autism (I can’t tell you how much I don’t care which one it is anymore) is telling you to throw your brother’s play station controllers behind our speakers which will undoubtedly break them, which will cause holy hell to be unleashed in our home.
Your brother has a deep attachment to his play station.
You cry uncontrollably, your grief palpable, and I know that for you, in this moment, it just feels so wrong for them to be sitting out in plain sight. I know we could hide them for a while, but honestly you find everything, and your father and I feel it’s best if we stand firm, and just say no.
Your father holds your hands with one of his and manages to find the remote with the other and put one of your favorite Baby Einstein’s on tv, and I feel the tension slip from your body. With a last hiccup I see your radiant smile break through your tears, your eyes meeting mine as you share your happiness at witnessing this old fave, controllers (for the moment) forgotten.
It will take me longer to forget.
We’re trying Justin, please know that. Your OCD and/or the more perseverative aspects of your autism have been ramped up considerably for the past year-and-a-half, and neither the behavioral plans nor the medications we’ve tried have really helped. We’re giving you something new now that will take weeks before we know if we’ve hit the jackpot or not (here’s hoping), because your obsession with arranging things not only keeps you from more productive pursuits, but wreaks havoc in our house and, worst of all, frustrates you to tears.
Sometimes Mommy joins you there.
Part of the problem, son, is that Mommy is a “future girl”, and when I look ahead at yours and know one day you will no longer live with us I anticipate that this behavior will not be looked upon with delight in your group home when you’re fifty. The people who will one day care for you will not be paid enough to have their entire closets rearranged, nor will they want to take twenty minutes to get you out of the house as you try desperately to angle a shoe just so.
I just want to help you.
The truth is when you’re in these “spells” as I’ve dubbed them I look in your eyes and the boy I know and love is no longer there, the bleak stare of obsession replacing the kindness and calm you radiate at all other times. This is so different from the stimming you do on the computer or on your DVD player, an activity which gives you joy and I believe if anything alleviates whatever frustrations you’ve been having.
This is just different. And I’ve been told it’s one of the hardest things to help in any autistic individual.
And frankly, that just sucks.
In the meantime we’ll hold out hope for this new med, and try to distract you with other pursuits whenever we can. We will prevent you from inadvertently hurting yourself or destroying things. We will hold you when you are overwhelmed and frustrated.
We will be there for your tears.
As long as we can, we will always be there.
As long as we can we will love you through this, and everything else that comes our way.
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June 28, 2016
This past weekend I had the great fortune to have dinner with a couple of my “autism mommy friends,” an evening out which not only provided me with great food and conversation but let me escape doing the dishes for one night. I really like and respect these two women, whom between them have three adult autistic children on the more severe end of the spectrum. We of course ended up talking about our kids and autism as we usually do when we can sneak out of our houses, and while basking in the glow of super fun martinis caught each other up on our lives, laughed, and bonded.
I also have friends with kids on the milder end of the spectrum. Some of them are women I’ve known from Zach’s pre-school days, women I really liked, and worked hard to develop relationships with them. These friendships have afforded Zach the opportunity for playdates as well, and I’ve also cultivated these friendships for that reason, as our collective ability to get together these days is always extremely limited.
I find my conversations with these two disparate groups bear almost no commonality.
When I discuss Zach, I talk about the merits of different schools, whether or not we should try baseball, which teachers I’ve heard are good with our kids in the approaching grades.
When I talk about Justin I usually am giving an “OCD update” and an “outing update,” and when things get serious, talking about those post-21 days and what I’m hoping his life will look like.
I will share with you I’m still working on that one.
I need moms to talk to in both camps, not only because my sons’ life trajectories are so different, but because I care equally about the decisions we have to make about their futures, some not so simple, some easier than others. Autism can be so isolating, particularly in the early days. I’ve found it an invaluable help to have other women to bounce ideas off of, to be able to say my more severe kid hasn’t slept well in four days and have them know immediately my fear is that this new change is permanent (and have them talk me down off the ledge). I need a friend who understands that when a teacher goes out on maternity leave it’s a big deal for my littlest son (and know she’ll talk me down off of that ledge too).
I just need people who get it.
So if you’re just starting out on this autism journey, I hate to say it but I’m going to add one more thing to the “get Early Intervention/deal with insurance/make doctor appointments/figure out their school program/try to sleep once in a while” list that invariable comes hand-in-hand with a diagnosis, no matter what your child’s age. Some people I know have found these women in support groups, or in the waiting rooms of private supplemental therapy offices. Many have made friends with moms they’ve met through their kid’s school, or by volunteering for a local autism organization. I personally made friends with all my kids’ Early Intervention therapists (hell, they were at my house all the time, I saw them more than my own husband), several of whom had kids on the spectrum who were older, and helped guide my way.
It doesn’t matter where you find them. Just find some good ones, and hold on for dear life.
Not only will these friendships save your sanity, but from my friends who’ve been around the block a bit with their kids who are older than mine, I’ve gotten invaluable information regarding our school system, available therapies, medications, and which local doctors are worth the trip and which aren’t worth the bother.
Hell, I’d nurture those friendships just for that last bit of info.
So when your life has settled down a bit and you can think of taking on one more task (and know I so get the enormity of that), make new friends. And as I paraphrase from what I used to say in Girl Scouts, keep the old, but make the new.
The new are gold for sure.
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June 21, 2016
The laugh roars up from his belly, a hearty chuckle we haven’t heard in weeks. My son is sitting on my lap almost doubled over from the hilarity of watching my husband wear his bedsheet like a hairnet and prance around the room (never a dull moment chez McCafferty.) When his father places it around his mid-section like a skirt, tears actually adorn Justin’s face as he watches in total concentration. He is engaged, amused, and completely captivated by the scenario unfurling in front of him.
We haven’t seen him this present in weeks. It is a joy.
For the past year or so Justin (and his family) have been struggling with his secondary diagnosis of OCD. Since there are no blood tests for autism and OCD it may seem like splitting hairs as to what is causing his incredibly compulsive behavior, and in the end it really doesn’t matter. What does matter is that his obsessions with arranging, moving and angling objects always culminates in his being miserable with his organizing. As someone very bright once said “you are only as happy as your least happy child,” and unfortunately as Justin has adopted this behavior, he has become our least happy child quite often.
And I want so badly to help him.
We’re going both the behavioral and the medical route. The former has had some limited success, mostly due to the difficulty of implementing the procedures while trying to cook dinner/help Zach with homework/answer a text etc. The latter plan has not worked well so far. We tried a medication whose side effects were supposed to wear off after several weeks, and simply didn’t. We weaned him off when my gut told me these changes were not going to abate and immediately saw the return of our not-so-sleepy child, for which I am grateful.
For once, I don’t really have a plan B. And for this A-type mama, that’s hard.
There are other meds to try, all of which take weeks to fully implement, and all of which carry with them the potential for side effects. If I’m being perfectly honest I would consider just skipping meds altogether and dealing with the behavior which fortunately is not present his entire day, but I always come back up against two things- his unhappiness while in the throes of his OCD moment, and the fact that this will not be considered desirable behavior one day when he no longer lives with us.
And yes, that day is far, far away, but as my friends with adult autistic children keep reminding me, like winter, it’s coming.
Since Justin will be changing teachers and classrooms in just a few short weeks we’re going to table the “experimentation” for now, see how spring break goes, and hope that the lessoning of this behavior we’ve seen in the past few days will stick. Perhaps we’ll revisit the possibility of a new medication down the road.
It’s so hard for us to watch him go through this.
I can’t imagine how hard it is for him to actually live it.
As much as I write about the positive things this family had achieved with two children on the spectrum, I think it’s important to write about the hard things too. As I’ve written before usually the difficulties go in cycles, and I’ve gotten better at reminding myself of this as the years have passed. My fingers are crossed that this will pass, or lessen, too.
And if not, I’m going to remind myself of an impromptu headdress dance to get us all through.
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May 16, 2016
This weekend a momentous event occurred, not one with trumpets and flashing lights, but momentous all the same.
The truth is, if I hadn’t been paying attention, I would have missed it.
My beautiful boy turned thirteen last week, and as usual we had a zillion parties for him (okay, three), including his family party on Saturday. I will share with you that although we’ve tried, in the past the boys’ birthday parties have not always been the joyous events I conjured up in my mind years prior to giving birth (then again, most of our moments with them do not exactly match what I conjured up before their births).
There was the party where despite giving Justin a “big brother gift” he still wanted to open all of Zach’s presents (and trust me, not one of them was enticing to him).
There was the party where my boy had an epic meltdown for a reason we still can’t discern today, and we had to carry him protesting to his room (that quieted the house). Amidst our struggles there was always joy (I love birthdays so much there always has to be at least one moment), but often Jeff and I were left exhausted at the end of a celebration, faced with at least one unhappy child and a mountain of dirty plates that looked as if it would never go away (hell, who’s a fan of dirty dishes anyway?) More often than not we were mostly relieved our little birthday parties were over, knowing we’d have a breather until next year.
This past weekend was different. For the first time there was not one single crisis, no pouting, no tears. Both Jeff and I actually talked to our relatives, ate too many appetizers, and had an amazing time.
But the big moment, the one I actually noticed while simultaneously talking to people/eating too much/remembering to get my camera was when I told Justin it was time to open presents, and he came into a room laden with gifts. This year, he just walked over to a chair, sat down, and waited to be presented with his stash.
He was so grown up he literally took my breath away.
I’m trying so hard to recognize these moments, to tuck them away for if/when times get difficult again, to bring them out and revel in them even when things are good. If two years ago someone had told me my son would be patient (and happy!) while opening his birthday presents I would have laughed. If someone had told me eight years ago my son would be potty trained I would have laughed even harder (and ate some more chocolate.) Going back even farther, if someone had told me I’d once again sleep through the night (or what passes for sleeping through the night for an almost fifty-year-old woman) I would have yawned, then thrown my arms around said person in a primal hug.
There’s no snark where sleep is concerned.
The truth is, I keep hearing about the “post-21 cliff” and the “terrible teens,” but honestly, things just keep getting easier in our home. My eldest son has truly grown into his own skin, surmounted many of his sensory and communication issues, learned to soak in and enjoy the world around him. He is a predominantly joyous, peaceful child.
This is not to say we don’t have our moments. The OCD is still a struggle, and when we don’t understand him confusion and frustration reign for all.
But I will honestly tell you those moments are now few and far between, and we’ve created an ever-strengthening co-existence in which my boy is happy, and I feel sane, and whole.
It’s getting better, and it’s not just chez McCafferty. I’ve seen this peacefulness occur in many of my friends’ households, friends whose children presented staggering challenges mere years ago.
Things are getting better. And I’m so grateful I feel we’re really enjoying our lives, not going through the motions of just getting through the day.
And for me, that’s better than trumpets and flashing lights any day.
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March 22, 2016
Oh, how I love Justin’s school.
Recently I schlepped up north for my boy’s parent-teacher conference, excited as I always am, but this time with a lump in my throat too.
You see, my son, who I swear just yesterday was a toddler, is now less-than-a-warranty away from being a teen-ager, and he’s moving on to an upper elementary classroom.
This means that he will be leaving his beloved teacher and aides, and the actual classroom he’s been in for six consecutive years.
As excited as I am for the switch, just thinking about it makes me verklempt.
I settled in with his teacher at her conference table, thrilled to hear he’s doing well. I was regaled with his progress in math (he did not get that from me,) reading and spelling.
I listened to how much he’s matured on their outings to Toys ‘R’ Us and Target, how he revels in each adventure. I listened to his teacher tell me my son has a crush on a para in another class (so age appropriate!) whom he tries to hug at any opportunity.
I smiled, and chuckled, and didn’t cry once.
I thought I’d make it through, but then she hit me with this. She and the staff are so happy for him to move on, but they all hope his replacement is as smart and loving as he is.
And while I’m thrilled to hear they will miss him, I’m even more thrilled to know once more that they “get him.”
I’m proud that Justin can learn, is mostly well-behaved, showers staff with frequent hugs. I’m also thrilled because this means he’s predominantly happy, an emotion I did not think we’d achieve back in the dark days when insomnia, aggression, and a refusal to eat dominated our world. I love that he loves school, that he’s productive, safe, happy.
It is a priceless gift when you’ve found the right school placement for your child. I know it doesn’t often come easy, that mediation and court cases sometimes ensue when parents are desperately searching for what their child needs.
But whenever you can, if you’re able, fight for what fits your child’s specific needs. Do what you can to make certain your child’s sensory, academic, and communications needs are being met. As much as you can, fight.
Things aren’t perfect with Justin. His OCD can be daunting, and there are still, albeit infrequent, aggressions on his part.
But he is mostly a happy child, and while I’d like to attribute some of that to his innate nature I must give so much credit to his wonderful schools, the teacher and paras who have been so dedicated in making certain Justin achieves his best self.
We couldn’t have made it here without them.
And as I walk back to my car not bothering to keep the tears in check I am awash in gratitude. Gratitude for such devoted staff. Gratitude for what that means for our family.
Gratitude for my boy, just the way he is.
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February 16, 2016
He grabs my sleeve for what seems the thousandth time today (and it’s only 11:00 AM), says his word approximation for “buckets,” and looks imploringly into my eyes. The single syllable doesn’t sound much like its intended word, but I understand immediately what he wants (as I have the other 999 times,) and I gently say “later” which prompts him to walk away.
Don’t worry. He’ll be back in a minute-and-a-half.
My oldest son Justin has an OCD diagnosis along with his main diagnosis of severe autism, but frankly when he’s in the throes of organizing my husband and I don’t care which disorder is prompting this behavior. As with everything else with autism, the good and the bad, this penchant for moving things, putting them at angles, hiding them (my personal favorite as my almost fifty-year-old brain can’t function without its visual cues) and throwing them down stairs comes and goes in cycles. He’s been doing this on and off for years, but it’s been more severe during this cycle, and frankly our patience is wearing thin.
His latest desire is to reorganize the hundreds of toys we’ve saved since his infancy that are stored in our garage in bins, and he doesn’t seem to care that on most days it’s -42 degrees in there (a slight exaggeration, but that’s how it feels!) In case you’re wondering we do have a padlock on the door to keep him out, but that doesn’t keep him from asking (and asking, and asking) to be let back into organizing mecca. Frankly, if we keep him out he’ll just reorganize something else in the house (he hit my desk once, I thought my head would explode,) so there are no easy solutions.
We are trying a new medication which will take a few weeks to kick in (they always do,) and we’re having the tried and true BCBA from his school out to the house in a few weeks, so we’re on top of this latest challenge.
Two things I’ve learned for sure about autism over the last thirteen years. It’s here forever, and there’s always something.
When challenges rear their ugly heads in our home my husband and I try to find the humor in the situation if we can (Justin’s approximation for buckets sounds like “butt,” a source of endless amusement for my nine-year-old and my husband if I’m honest.) There are times when this is impossible, like when he’s been in an aggressive phase, or has simply been mostly miserable. Watching both of my kids suffer at times from their disabilities has been the hardest part of this journey, has made the logistical, financial, and physical difficulties of this disorder pale in comparison.
But sometimes (yes I just said “but”) a little levity can be found, and as he requests entrance to our frigid toy haven I try to keep this in mind, and remember this too. Some things with autism are permanent, but some, at least with our kids, seem to come and go. We’ve had entire years where our house has not been an experiment in feng shui, and although I don’t ever think this desire will completely disappear, it will most likely go into hibernation if we wait it out.
At least, as I salvage my precious sticky notes, that’s what I tell myself.
The other way I get through these difficult cycles is to lean on my “autism mommy friends,” who get that when I share how difficult this cycle is what I’m really saying is “Oh my God what if this is for the next forty years?” and talk me down from the ledge. They are often the ones who remind me of similar times that have resolved themselves, who give me the hope that this period will too.
In the meantime, while I’m waiting for this “something” to work itself out, there’s always their words of wisdom (and wine and chocolate too.) So I wait, and try to find levity where I can.
And quite honestly, sometimes I like his rearrangements better.
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