September 26, 2016
Highs and Lows
A few weeks ago Autism Speaks linked my blog to their Facebook page promoting a piece I’d written to Justin about his future residential choices. As usual there were the typical lovely responses, the not-so-lovely responses, and the downright ugly (see my piece here). I usually let the comments wash over me (or I wash them down with chocolate) but one really stuck with me. The responder wrote, “I stop reading comments that begin with ‘my high-functioning.’” As the mom of a child considered “low-functioning” (although I hate the high and low labels,) I so get it.
But I’m also the mom of a child considered high-functioning, and I so get parents’ angst on that one too.
My youngest has regressive autism, developing typically until he was eighteen months old (believe me, I harassed his pediatrician and did the CARS and M-CHAT on him compulsively, he showed no signs of the disorder). During his eighteenth month he had two back-to-back illnesses, after which he lost all his words, developed a slight rash all over his body, and morphed into a child we barely knew. Gone were the smiles, the laughter, the joy that defined our toddler, leaving a non-verbal and unhappy child in its wake.
Good times.
We immediately put him on the gluten/casein free diet (the one that had seemingly no effect on his older brother), and over a period of months Zach regained a great deal of his personality, the rash disappeared, and the words started to come back. Yes, he was still autistic- his obsession with Thomas the Train and his rigidity in all things transitional let us know we still had a different child from the easy-going one we’d raised for a year-and-a-half. However, he never showed symptoms as severe as his elder brother, and a year after his diagnosis we had real hope he’d eventually mainstream in school and live a life resembling that of his parents.
Three years after receiving the autism label he did just that, mainstreaming part of his kindergarten day in a “typical” classroom, and we felt confident the sky would be the limit for this child.
But the truth is statistics tell a different story, one where only 30% of high-functioning autistic adults attend college, and even less are gainfully employed.
As great as Zach is doing, I know we’re not out of the woods yet.
The truth is I’ve never been much concerned with labels (except the ones on my shoes, I have a weakness). Even when Justin, our severely autistic child, was little, I never really hoped he’d shed his diagnosis, for I believe in this family my kids truly do have a genetic predisposition (hell, they’re all autistic). I did deeply wish for his independence as I do for Zach’s, and I admit as the years passed I knew I had to let that dream go for Justin. It’s not because he doesn’t really talk- there are plenty of non-verbal autistic adults who communicate in different ways who care for themselves. It’s more that while he can do a lot for himself he still needs help or supervision, and mostly, his interests never made it out of the toddler era even though he’s a teen (Baby Einstein still reigns supreme in this household). Despite well-wishers on my last Autism Speaks post, my eldest boy will never live independently. And while I of course worry about both boys’ futures, this is an extra anxiety I mostly keep shelved so I can function.
I still haven’t figured out how to care for him from beyond the grave. Any suggestions would be deeply welcomed.
The truth is I worry almost as much about Zach and his future. He still has his challenges, and although I am forever grateful he can communicate all his thoughts and feelings (boy can he!) we still work hard for him to be in that 30% who attend college and are gainfully employed. My husband and I are anticipating having both boys living with us after high school (hell, many of my friends and relatives still have their kids home years after college and they’re typical), given that the economy isn’t great and the opportunities seem even more limited than when my husband and I graduated.
I’m pretty sure long periods of “Kim time” will have to wait.
I admit I purposely have cultivated friendships with moms of high-functioning autistic children as well as low-functioning autistic children, as their needs at this time are so different and I personally need people who “get it.” It helps me to have friends who get my anxiety about my youngest having friends, as well as having people in my life who get that when I say Justin isn’t sleeping I’m really saying I’m afraid it’s permanent (usually they can talk me down from the ledge).
The reality is I think we should stop focusing so much on high and low labels, work toward as much independence as possible for our kids, and get that as parents we all worry about what will happen to them no matter where they fall on the spectrum.
Believe me, what happens to Justin after I die is an ever-present fear. But the little one has given me my share of sleepless nights too.
No matter where our kids fall on the spectrum it’s still hard and wonderful and heartbreaking, and each parent brings different levels of coping to the table too. I hate to see our community divided over this, as it’s so apparent we need to come together and support one another as much as we can.
And as a mom of two kids on opposite ends of this autism spectrum journey, I plan to do just that.
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September 19, 2016
No Shame
This past Friday I had the honor of having my blog featured on the Autism Speaks Facebook page. People who took the time to read my post learned about my feelings regarding what will happen to Justin after his father and I are gone (I know, so uplifting!), and as usual, there were many comments on their Facebook page regarding what I wrote.
Many of them were lovely, and I am deeply appreciative of them. Some were, shall we say, very interesting.
There were the people who told me to have hope which is nice, but my son is thirteen and still likes to cuddle up with me at night and have a bedtime story. He will not live independently.
There were the individuals who wrote about their high functioning autistic children, many who started out non-verbal as youngsters but are now on the student council, the debating team, you fill in the blank.
If asked, I’d refer them to my bedtime story sentence.
There was an invitation from Rocky to try his all-natural vitamins, as they work WONDERS!
There were comments regarding friend’s autistic kids on the honor roll right next to comments expressing the fact that the writer could never die.
Those latter ones always get to me.
My personal favorite was the person who didn’t understand the point of the post because I didn’t explain where Justin would live for the rest of his life.
Still figuring that one out ma’am.
And then there was this one from a grandparent of an autistic child (one apparently doing very well): “they can learn to take care of themselves if parents would stop doing things for them and teach them to do it on their own. Autistic children are smart. Stop making their disability a disability to them.”
Please.
I promised I’d always be honest with my readers, and I could tell you this one hit me hard or brought out the tissues, but its ridiculous factor simply enabled me to justify eating more chocolate that day.
That’s me, always looking for the positive.
Eight, maybe even five years ago, I would have had a sick feeling in my gut as “mommy guilt” crept in over that therapy/vitamin/shaman I didn’t try when he was a toddler and his brain was still malleable. I would have forgotten that Justin was diagnosed before insurance picked up the ABA tab, and that I was his primary therapist thirty hours a week for eighteen months before he was eligible for school. I would probably have glossed over the fact that when we learned his prospective school program was “okay” for him but not ideal that we completely uprooted our family and left the Washington DC area that we loved, for the Jersey shore my husband was not so fond of.
I would have forgotten that for years, and years, (and years!) my whole life centered on helping this child to be as independent as he could be.
I would not have remembered that Justin was, for a time, my entire life.
Now, I’m thankfully past those days of “parent shame” (I stole that from one of the people who responded to Grandma, bravo!), but I’m writing this today for any parents of newly diagnosed children, or those who haven’t been initiated into the autism community for that long.
Never, ever, EVER let anyone shame you into believing you’re not doing enough for your child.
I have two autistic children. My youngest was born four years after his brother, and quite honestly I can tell you he probably got only half the attention and therapy his older sibling received (Mommy was quite tired by that point). There were days we actually played therapy hooky, days when going into my fourth consecutive year of therapy with one of my children I just couldn’t pull it off.
I know. As Cersei would say in Game of Thrones, “shame.”
While my youngest certainly still had a mom passionate about helping him be the best he could be, the absolute focus with which I executed this endeavor with his brother was not replicated with my last child.
And someday, he could be president. His brother will need someone to care for him until he dies.
I just need to say this, as the mother of two autistic children, and a former veteran educator. So much of your child’s outcome depends on their innate abilities and their level of motivation.
I’ll say it again. So much depends on their innate abilities and their level of motivation.
Memorize it. Please.
Do as much as you can, every day, to help them reach their goals and do as much as they can for themselves. At the same time take care of yourself, and take breaks (mine include wine and chocolate, shocking I know).
Most importantly, no shame for what you or your child can’t accomplish, ever.
And I mean ever.
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September 12, 2016
It’s Complicated
(Dear readers, I apologize for my prolonged absence. It’s been stomach virus, flu, and root canal here (oh my!) but I’m back in the saddle now).
Dear Justin,
I’ve been having conversations about your future lately with various people, all of whom I truly believe have your best interests at heart. We’ve been trying on phrases like “shared living” and “group homes” and “sheltered workshops,” and I’ve been rolling them around in my mouth, trying them on for taste.
None of them taste nearly as good as chocolate.
You see, I’m trying to figure out our collective future, where you will live, where Daddy and I want to live (according to your father it’s not a permanent stint in Jersey), and where your brother Zach, who is also autistic, fits into the picture too.
Let’s just say it’s complicated.
You see, my heart is torn my sweet boy, because as much as you’ve matured and grown since those difficult days twelve years ago when you were diagnosed with autism at the tender age of seventeen months, some things with you have not changed. You still love being at home. You still want to leave said home for about an hour each day and do something wonderful. The only place you ever want to stay more than an hour is Great Adventure or Disney, and with the latter being a bit financially out of reach on a frequent basis that leaves us with Six Flags and the occasional Pixar movie for outings of any length.
Your needs are complicated.
I have friends, friends with severely autistic adult children, who tell me there is still room for growth, that I don’t know how you’ll change and grow in the next eight years before you graduate from high school. I speak to them of the group homes their sons live in, the day care their kid calls college, the seven-day-a-week in-home care they’ve fought for and won for their child. I read books and blogs about adult autistic children and their particular work and living arrangements.
For many of them their transition has been fabulous.
And I know in my secret heart of hearts that if I’m honest, most of these pretty choices are not for you.
You see, I believe if you had your way you’d stay with us and I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after.
This dream is why your mother runs every day and limits her wine consumption (most of the time).
One might ask how I know this when you can’t tell me yourself that your preference would be to live with us, well, forever, but I know.
I just know.
I know this the way I knew at six months you shouldn’t have had such a penchant for spinning things.
I know this the way I knew something was seriously different about your development at sixteen months even when your pediatrician didn’t seem that concerned given your father’s childhood, and told us to “wait and see.”
I know this the way I knew my world was forever changed when just a month later he shoved some articles into my hand with the word “autism” in their titles, told me to call a developmental pediatrician, and basically shoved me out the door.
I also know our pediatrician was an asshole, but that’s for another story.
I know the more adventurous trappings of an adult life would not be to your liking the way I know I have to build in extra time in the morning and at night just for us to hug.
I know if you could talk you’d tell me you’d like to stay with us forever so no matter how big you get you can still sit on my lap at night, listening as I read your Eric Carle story for you, fulfilling your penchant for cuddling and that particular fiction you’ve loved since infancy.
I know that if you had your choice everything would remain the same, with even that interloper of a little brother remaining in our home with you forever.
I know if it was possible you’d keep your routine of home and school and one-hour-outing for the next seventy years.
I also know that things will have to change.
Part of me wants to keep you here with us until we can do it no longer, and I don’t say this as a martyr.
Part of me wants you to live apart from us to give your father and I some breathing space, and I don’t say this as a callous mother.
Part of me wants you to have some sort of job, to contribute to society.
Part of me just wants you to have a life of leisure because I know you won’t give a damn about having a job.
Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.
Part of me desperately wants my freedom back.
Part of me wonders who will snuggle with you and read you your bedtime story at fifty.
Part of me laughs at myself for these musings for everywhere I turn (except for Hawaii which seems to have fabulous adult services, aloha!) my options seem limited, to say the least.
Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us (and not with your little brother as he has already told me), so really the only questions are when, and where.
Part of me just wants to know the future.
Part of me really doesn’t.
All of me wonders, time after time, how I will manage to give you a fulfilling life for forty years from beyond the grave.
Those “how” questions are a pox upon me.
As I accept the fact that none of this is an easy fix, all of me knows I love you and want for you the three things I’ve wished since your conception- for you to be safe, happy, and loved.
And all of me knows it’s complicated.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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August 26, 2016
Maybe
He snuggles into my lap as he does every night, smelling sweetly of baby shampoo with a hint of cinnamon which makes me wonder if he got into the spices again. Tonight he curls into me with a huge smile on his face and looks into my eyes with joy, because this evening I’ve chosen “The Very Hungry Caterpillar” to read to him, which means he’ll get his Eric Carle fix. Unbeknownst to him I’m switching things up tonight, because recently he’s begun stringing two words together, and I want to capitalize on the moment.
God forbid this former educator should let a teachable moment pass.
So tonight I open to the first page and simply wait. He stares at the book, gives me an “eeeeeee” of excitement, then looks at me as if to tell me to get on with it. I don’t, and just wait to see what he’ll do.
And damned if my severely autistic teenaged son doesn’t start reading the entire story to me.
Truth be told, only every third word or so sounds like the printed one on the page, and even then he speaks so quietly I need complete silence to hear his syllables, each painstakingly uttered with effort and pride. But he is reading one of his favorite books to me, looking at me periodically to see if his mom is following along.
Believe me, I am.
I listen to every sound exhaled with effort, overwhelmed to hear one of his faves read to me for the very first time in the thirteen years I’ve been reading aloud to him (not counting the eight months or so in the womb, yes I was one of those pregnant ladies).
I recall how it felt to realize he could read at three, as his therapists and I threw out index cards with increasingly complex words on them and asked him to hand them to us, which he did with remarkable accuracy.
I remember reading about hyperlexia and taking it all in, recall thinking that even if he never leads an independent life he’d have this.
I recall thinking then that our biggest hurdle with him would be eliciting words, and it wasn’t . He’s learned to communicate in various venues, and now predominantly makes himself understood with his iPad, words being his default plan. I remember thinking how devastated I’d be if words weren’t his primary means of getting his needs met, and I remember the day I realized I should instead be grateful he’d figured out other ways, as some autistic kids never do.
I remember feeling so proud, just as I do now.
There will be many things that will never come with time. Justin won’t marry or go to college. He’ll never drive a car or drive me crazy with requests for said car. He will leave us physically at some point but we will always be intertwined, his fate the primary driving force in my life, his safety and happiness at the forefront of my goals.
But the people who told me he’d eventually talk (and there weren’t many) were right, so maybe my friends who’ve crossed the bit “transition divide” are right too. Maybe I will be able to craft a sixty year span of a good life for him from burgeoning adulthood to old age. Maybe the words will come more fluently.
Maybe those words that warm my soul will touch others too, make them see my beautiful boy as he is- smart, affectionate, and harboring a heart of kindness utterly clear and undivided in its intent to be pure love .
Maybe.
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August 18, 2016
How Far
He grabs my arm with urgency, stopping me in the middle of washing a frying pan I didn’t really want to be washing anyway. He turns my entire body with his grip, eyes intently locked with mine, all business. When he sees he has my focus I hear the telltale sucking in of air that precedes all of his speaking attempts, and I wait to hear his sounds. What comes out is unintelligible to anyone not his parents, but I know he wants his “Clifford” CD for the computer, and he wants it now.
My severely autistic son, just shy of thirteen, is choosing to use his words over his communicative device.
His desire to get his needs met through syllables is relatively new, his attempts at speech ramped up since spring break. He does use his iPad to communicate what he wants, sometimes pressing buttons to sound out his requests, on occasion typing his words to summon what he wishes for. This bypassing of communicative devices at home is new, and his father and I welcome it, as we’ve been searching for speech for him for almost twelve years.
But if I’m honest with myself although he’s made progress, particularly in the last few years, most of what he asks for is only understandable to his mom and dad. And since we won’t be around to take care of him forever, that’s a problem.
Don’t get me wrong, the sounds are thrilling. We waited years and years to hear them, eagerly anticipated him breaking his tenacious silence despite years of speech therapy both in school and in private therapy.
But I’ll share with all of you that my focus has shifted over time from wanting him to communicate through speech to simply wanting him to have a form of functional communication at all. And that’s what we’re striving for both at school and at home.
So while I welcome the words we’re also trying to get him to use his Proloquo2go, and I work on his spelling with him weekly as well. The truth is while I try to remain in the present I always have at least one toe (or usually a foot) mired strongly in the future as well, and I often think about how he’ll get his needs met after we’re gone. His father and I have an almost uncanny ability to understand what he wants, but I don’t expect his caretakers to have those superpowers. Being able to read his mind and anticipate which DVD he wants to play next will not be listed as a job requirement for his lifetime care.
So I’ll keep pushing him.
Because I want to crawl inside his mind and understand his thoughts, his feelings, his wants, all that he has stored up there that his neurotypical parents aren’t able to discern.
Because someday we won’t be here to anticipate his wants, and he’ll need a more functional way to communicate his needs.
Because I love him to the moon and back, and want him to be his best self, to be as independent as he can be.
Because learning to take care of his own needs has become my new barometer for his success- not how many ABA trial he completes with 80% accuracy, and not how many intelligible words he emits.
Because that brave, beautiful brain has so much to share.
So his entire tribe will keep pushing him, not to his breaking point, but just to see how far he can go.
And I believe that will be very far indeed.
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August 10, 2016
New School Year Transition Tips for Autistic Children
Summer vacation is ending all too fast, and before we know it those bright yellow school busses will be darting through our neighborhoods and a new school year will commence. Moving to a different classroom, grade, or school can be stressful for any child; for those on the autism spectrum, handling anxiety about the unknown can be exceedingly difficult. These fears can be reduced by taking small steps to familiarize your child to his or her new situation prior to the beginning of the school year. Here are some tried and true tips to making a smooth transition, and to starting a new school year successfully.
1. Talk to your child frequently about what to expect in the upcoming year. It’s the simplest tip, and perhaps the most important one to help reduce your child’s anxiety.
2. Cross days off on your calendar. Some children may have anxiety about when the school year begins. Simply crossing days off the calendar may help your child better understand when the school year starts.
3. Create a new morning routine and practice it prior to the start of the school year. Begin waking up your child a little earlier each morning so that he or she is acclimated to the new wake-up time way before that big first day. Do a few “run-throughs” near the end of summer vacation so your child knows what to expect in the time before leaving for school. If your child responds well to visual schedules, you might create one outlining everything from getting dressed to going on the bus.
4. Take a tour of the school. This can be arranged with the case manager of your child study team. You may not get to meet your child’s new teacher this early, but at least your child will become familiar with the building prior to attending. When you are on your tour, visit the main office, bathrooms, cafeteria, gym, library, playground, and any room your child may spend time in during the coming year. Take pictures on your tour and incorporate them into a social story afterwards so that you and your child can review it during the summer (a social story is a book that a parent or caretaker creates to explain in written and/or pictorial detail what the child should expect for an upcoming event).
5. Walk through emergency procedures on your visit. Many children on the spectrum have difficulty with loud noises and breaks in routine. If possible, when on your tour, have your case manager show your child where to go and what to do during any emergency scenario. Doing this will help your child be prepared, and he or she might find it fun to have mom or dad practice standing along silently.
6. Create a daily school schedule for your child. You may not know the exact routine, but even walking through one day may make your child feel more at ease. If possible, ask your case manager to acquire the present year’s schedule prior to your tour, and have your visit at the school follow that schedule.
7. If at all possible, have your child meet the teacher prior to the start of school. Remember to take his or her photo and add it to your social story.
8. Write a letter outlining your child’s strengths, weaknesses, possible sensory issues, dietary restrictions, and favorite reinforcers. If possible, have your child help you create this document, as it will be invaluable input for school staff. Be sure to include a few things that are fun and unique about your child. A copy of this letter (one to two pages maximum) should go to your child’s teacher and aides, but should also be made available to any staff who work with your child. Remember to send a copy to the principal, assistant principal, occupational therapist, physical therapist, speech therapist, physical education instructor, music teacher, etc. It is very helpful to teachers to have a “snapshot” of your child prior to instructing him or her. Don’t hesitate to brag as well!
9. If appropriate, make certain a behavior plan is in place day one. If your child has a plan that’s been working for him or her, ask that it be shared with his or her new teacher and implemented immediately at the start of the year.
10. If your child uses an augmentative device to communicate, make sure all the adults in his or her classroom are familiar with it. Many augmentative devices require some instruction on how to use them. At the very least, the teacher should be familiar with the device prior to the fall. All the aides who will work with your child should be trained as well, and there should be a plan in place so that all are comfortable using the device within the first few weeks of school.
11. If your child has sensory issues make sure he or she has a favorite sensory item available from the first day. For those children on the spectrum who struggle from sensory overload, certain objects can offer a great deal of comfort. Make sure your child will have at least one available at all times.
12. Ask to meet the bus driver. Many bus drivers take a practice run the last week of summer vacation. Request a “meet and greet” with your driver so your child feels comfortable riding the bus on that first day. You can even ask if you and your child can do a ride-along to the school as some drivers are amenable to that request.
13. After the school year begins be on top of your child’s progress. Make contact with all of your child’s instructors in the first few weeks of school. This enables you to track how your son or daughter is progressing and lets school staff know you are interested and invested in your child’s success.
14. Write a thank-you note to your child’s teacher and principal. If the first few weeks go smoothly for your child, it never hurts to thank those responsible for a smooth transition.
15. If possible, volunteer. Your presence at school sends the message that you are actively involved in your child’s education. Also, (for the most part) children love to see their parents at school. You will score points for being there!
16. Ask for help. Requesting assistance shows that you are willing to learn and to try new things to help your child.
17. Last, but definitely not least, try to relax. All children can pick up on their parents’ anxiety. If you can keep yours in check, it will help your child stay more calm on that all-important first day and through the school year.
Have a great year!
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August 1, 2016
Yin and Yang
The other day, I got cocky with autism.
You have to understand, when it comes to Justin and any kind of outing, I usually visually map the event in my mind, try to anticipate any hurdles that might come my way (yes, I’m a planner if that has not yet become clear) and have a plan B, and sometimes a C. But Friday I let my guard down because it was a hair appt. for my boy, located in an establishment we’ve been going to for about ten years, where in the last few years his behavior has always been fabulous.
Once in a while he’ll try to rearrange all their DVDs for them, but sometimes they like the end result better anyway.
The truth is I didn’t plot out all possible outcomes in part because he’s usually so good, and in part because I was debating how much more technology my youngest son was entitled to that day (we had a discussion later about what “entitled” means) so I ended up rushing a bit, and didn’t see what my eldest had clutched in his hand as we approached my SUV. I didn’t even notice until I heard a funny noise come out of him and glanced back to check on him, then saw the offending object.
There, mocking me, was his favorite toy.
Many of you might think it’s sweet that my son wanted to bring an object that brings him comfort along in the car, however I knew right away we were in trouble. You see my son is the king of “trades,” meaning that I knew immediately he’d want to leave his favorite toy there after his hair cut and go home.
Where promptly seventeen minutes later he would ask for his favorite toy.
This may not seem like such a big deal (really Kim, just get in your damn car and drive back afterwards and get it!) but that night we actually had plans (a miracle!) and frankly I just didn’t feel like dealing with it.
Bad mommy was in town.
I tried to negotiate when we got there, but summoning every ounce of his McCafferty stubbornness (yes, this is my husband’s fault) he insisted on bringing the toy into the shop. The owners managed to distract him while I ran out to the car and hid the thing, but to no avail. Once we got outside he looked in the car and said “toy” and I shook my head no. Then he took a deep breath and did something he’s done in school but never for me.
Damn if the kid didn’t string two words together and say perfectly clearly “open door.”
Of course, I did. And as I followed him into the shop and watched him angle his fave just so on the leg of a table I decided not to sweat this one. After all, this could have happened three hours away from home in a place where the proprietors might not have been excited over the prospect of an addition to their store. He could have ended up intensely frustrated at not being able to arrange his toy to his specifications, and I could have had a hell of a time getting him back to the car whose parking lot borders a busy road.
In autismland, anything and everything could have happened.
So we left without any more fanfare, my boy “eeeing” ecstatically that he’d made his mother understand what he needed, me excited that he used multiple words that anyone could have understood to get his needs met.
Really, it was worth going back for the toy, plus there’s a Wendy’s on the way home and I knew I could treat myself to a frosty.
Rewards are important.
While Justin does have a communicative device that he uses, we still want him to have some basic communication skills that people other than his parents and teachers can understand, and equally importantly, we want him to try to actually use them.
And lately, just lately, after twelve year of trying to cajole some words out of this boy, I think we may accomplish just that.
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July 25, 2016
Whatever We Can
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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July 11, 2016
Find Your Calm
A few weeks ago I wrote about my week in paradise (again, don’t hate me, had not been away for three years) and my desire to “keep my calm” upon my return, knowing that within days my eldest son who is severely autistic would be home for the better part of three weeks.
I’ve made a conscious decision since our return to try to take things more as they come, which is not easy for a girl who’s a planner extraordinaire, always thinking two steps ahead and not necessarily living in the moment. I’m not complaining, for this trait served me well as a teacher and has also served me well as the mom of two special needs kids, so I’m not hanging up my perseveration card just yet.
I’m just thinking I don’t need to wear it quite as often as I do.
The last three weeks with Justin home had their ups and downs, but several things happened that were huge milestones chez McCafferty. I screwed up my courage and took both boys to the beach by myself (on 4th of July no less, barely missing getting stuck watching the Ocean Grove parade which would not have gone over well with my eldest). Zach made it through acting camp beautifully, no curbs on impulsivity needed for my dragon king. My husband and I finally had enough perspective to see how really bad Justin’s OCD has gotten in the last few months, and have decided to take the plunge and begin a new medication we’ve been resisting trying because it seems, well, so damn serious.
But the truth is I’m the big picture girl in this relationship, and when I think of where Justin might be living down the road I realized nobody is going to put up with him reorganizing their closet (I use the term reorganizing loosely here) nor are they going to want every sticky note they’ve written “vital information” on to end up in the trash.
Okay, that last one might just be my issue.
I think what I realized on the sands of St. Lucia was that I’m often so stuck in the myriad details of raising two kids on the spectrum that I’m unable to look beyond where we are now, and subsequently to work backwards and take the steps necessary to where I want to be. Sometimes my stress level with Justin (and my husband’s too) is through the roof, and we lose sight of the big picture by simply immersing ourselves in the day-to-day. Stress literally decimates my ability to think “down the road,” and I’ve got to do whatever it takes to reduce that in my life. Even if that means that sometimes when someone asks me to do something I just say no.
Imagine, what a concept.
So I’ve come back determined to keep my calm at any cost, so I can make those big and small decisions with a clear head. Keeping my calm includes exercise, sleep, yoga (and of course my faves wine and chocolate) and times when I’m not actively anyone’s wife or mother. Periods where I’m just me, giving myself the chance to recharge.
Fortunately, I like hanging out with myself. Seems I’m still good company.
Whether you’re just starting your autism journey or are staring down the barrel of your autistic kid’s teen years, especially if you’re the primary caregiver, make that time for yourself. It’s crucial physically, emotionally, and will literally save your sanity. If people have offered to watch your kid for you take them up on it. Hubby offering you a night out- go.
Hell, you’re probably going to have to ask for it. As Nike says, just do it.
Carve that space and time for yourself. Make it happen no matter what.
Do whatever it takes to find your calm.
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July 5, 2016
Where He Is
We sway in slight staccato, my boy’s arms wrapped tightly around my waist, his left cheek flush with my right. We hold each other close as we do every morning, our sacred ritual, our own unique way of welcoming the day.
I recall the websites lamenting lack of eye contact, and smile as I think about the gourgeous gaze he bestows on his mom, dad, brother and anyone in his inner circle.
I remember how the internet implied he’d never be affectionate, and chuckle as his arms wrap even tighter around my torso.
I think back to dire warnings of constant meltdowns for life, and while we dwelled there for a while, now my boy greets each day with unmitigated joy.
I recall that nowhere on the website did anyone mention how rewarding it would be to watch him achieve even minor milestones, how meeting him where he is, not where any books or child specialists think he should be, is a reward in itself.
He pulls back to bestow a kiss upon me delivered with his signature grin, his way of letting me know all is right with his world. We start the slow shuffle to begin the day, and for the thousandth time I am grateful for this boy, his laughter, his life, his love.
Grateful for the ability to meet him where he is.
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