May 1, 2017

The Weight of It

Posted in AMT's Faves, My Take on Autism tagged , , , , at 2:13 pm by autismmommytherapist

Today we ran into each other at the grocery store. We don’t know each other well, but our kids have been in the same class together several years now, and once we were very compatible room mothers. We chat about our kids (of course), their school, how fast summer is approaching. It’s the obligatory two to three minutes of conversation, but truth be told we both like each other, and despite our long list of things to accomplish that day we’re happy to have seen one another.

I think in another lifetime we would have been friends. Hell, I like your daughter so much had she been born thirty years earlier we would have been friends too.

I have lots of acquaintanceships and friendships after living here more than a decade now. A number of my relationships have a great deal more depth to them (my cub scout wife comes to mind, thank God she volunteered to “be prepared” too), and a handful of them are moms to autistic kids as well. I made sure to make friends with moms of kids in both the severe and mild camps, as frankly while I know it’s a spectrum (who doesn’t now) my kids’ “autisms” present as totally different entities, with so little crossover to call them both just “autistic” is laughable.

Okay, I’m not laughing, but you know what I mean.

The truth is, I really only unburden myself to the other autism mommies, in part because to explain what’s really going on at home would take a lot more time than two to three minutes (understatement of the century), and in part because I need the people I vent to to just “get it.” My mommy friends of “high-functioning “ (a label I hate) kids get my angst when my youngest has a friend issue or has decided he’ll never take care of his older brother when he’s older because he’s too much work (which I really, really get, but one can have hope). My “low-functioning” (another label I hate) mommy friends talk me off the ledge when I talk about sleep deprivation/potty issues/ his overwhelming need to hide my keys twelve times a day and know just to listen and not suggest anything, because I’ve been on the autism rodeo for fourteen years, and damned if there isn’t anything left to try.

Believe me, I’m A type. I’m thorough.

I know, my grocery store friend, we see each other fairly often. I’m the one in the decent-looking blue t-shirt after school trying to interest seven boys in a scouting program that just got with the twenty-first century. I’m at PTA meetings (although I’ve backslided this year). I volunteer at school for various events I’m not sure my son cares if I attend anymore (he says he does, but perhaps he just knows how to work his mom). I usually have a smile on my face (I once won a scouting award which touted I was “Kim Happy Clown McCafferty,” which was accurate on so many levels it was uncanny.) I look happy. I am happy.

But there’s this too.

I won’t even attempt to speak for other parents of autistic children here. There’s not just a spectrum for our kids, there’s one for the parents as well. I have read essays and even met parents of severely autistic children who literally wouldn’t change a thing about their kids because they believe it might change the core of who they are. I have read pieces by and met parents of severely affected kids who would do anything for a cure, who would get them to take that magic pill no matter how many pill-swallowing programs their kid had to attend to get that damn magic down their gullet. For the record, I’m somewhere in between “autism is unicorns and rainbows” and “suck it out of him.”

Where I am on that spectrum depends on the day. Hell, sometimes it depends on the minute.

The truth is I vacillate on many things that affect my beautiful, severely affected teen-aged boy. There are some days I am deeply sad about my boy never attending college, getting married, or driving a car (okay, maybe not that one so much). Some days my rational mind tells me he doesn’t think about these things (yes, I presume competence, no, a child still entranced by Baby Einstein in puberty is not worrying about his ACT scores) and is mostly happy with his life, and I should just be grateful for that.

And I am. And despite the accompanying OCD that often threatens the fragile harmony of our family he is happy and thriving. It’s just that when things disappear constantly on his fifty-year-old mother who desperately needs visual cues, sometimes I am not.

Autism mostly happens to the individual who has it, but it happens to the rest of the family too.

If I’m being perfectly honest with you dear acquaintance, I function, I present that smiling countenance to the world because I compartmentalize. You see, my son’s age and impending adult have arrived, and that “future thing” I put on the shelf because I was trying to get him to pee in the potty for a year-and-a-half has come to call. This fall will be his first transition IEP, and while I know his amazing, “Disney World-esque school” (I know it’s not a word but it should be) will do their best by my boy, the reality of post twenty-one is scary as hell.

The truth is, contemplating his future, is, well, impossible. You see, even if his dad and I can figure out something worthwhile and safe for him most days after twenty-one; even if we can find a safe residence he’ll actually stay in when technically he’s old enough to drink; even if we can fashion a world that will never be as wonderful to him as his school placement but will hopefully keep him happy enough the problem is, his dad and I will die.

And planner that I am, even I can’t get out of this one.

I am confident that his little brother will play some role in his care-keeping, even if it doesn’t involve living with him. His cousins are close enough to his age I’m sure they will check in on him as hubbie and I approach our dotage, and will do so after our deaths. I’m hopeful I can figure out what the hell to do with him, as the “group home versus “buy a place with our last dime and staff it” options are a constant melody in my mind. Frankly, I mostly block out the statistics on his chances of being sexually assaulted or left in a van to die (and no, I’m not being dramatic) because these issues are too painful to contemplate, and even I can’t help him from beyond the grave.

But damn, I’d give it my best try.

The truth is, the weight of his future world is always there. It’s there when I slink into the back of a PTA meeting fifteen minutes late because I had to help my husband get my son upstairs for bed. It’s there when I’m hoping for forty-five minutes of solitude at my youngest’s karate class because that afternoon was soul-grindingly hard. It’s there when things are actually good and I’m just directing kids through an obstacle course at field day.

It’s there when I run into you in the produce section, the products of which are still considered an abomination by both my kids.

That weight, that tangible weight, is always there, no matter how deep my smile, or if I remembered your name. Please know that’s why I might have forgotten what you do for a living, or why I halved my volunteer services this year because I’m just too damn tired. Despite the beautiful, vindicating, soul-strengthening moments I have with my family, that weight, that uncertainty, that impossibility, is always there too.

So please, just know.

 

Follow me on Facebook at Autism Mommy-Therapist

March 14, 2016

Post Twenty-one

Posted in AMT's Faves, My Take on Autism tagged , , , at 1:13 pm by autismmommytherapist

Summer 15 009

Another big milestone is hurtling chez McCafferty. My oldest son, who is severely autistic, will soon be a teen-ager.

And I admit, I anticipate this milestone with a mixture of both joy and trepidation.

Frankly, if Justin were neurotypical I’d feel exactly the same way. I taught sixth grade for a number of years, was witness to the myriad of changes that took place within my students between September and June. It’s a lot for them to process, the roller coaster ride of puberty not being the easiest (or the most fun!) thing in the world to deal with.

And honestly, I’m not sure how it will play out with Justin.

The fact that my son is going from a “tween” to a teen has made me start looking at his future, first by attending a workshop on sexuality and autism (conducted by my good friend at POAC, attend it, Jersey people don’t wimp out), and second by talking to friends whose adult autistic children have aged out of the system. I’ve seen a multitude of post-21 scenarios take place. Friends of ours have put their son in a group home, and so far he is thriving. Other friends have chosen to keep their two autistic adults home with them and have six to seven day a week care (which they had to fight for by the way.) Yet another has their son living with just a few other autistic adults in a condo setting, and thriving there as well.

And even as I contemplate all of these different options I laugh, because when Justin ages out in eight years so will a gazillion other autistic individuals, and I may not have so many pretty options.

Particularly in Jersey, where in ten years of living back here I swear I have yet to tell someone about my kids who doesn’t have a connection to autism.
We’re really good at it here.

To be honest, Jeff and I just want to pack it all in and move the kids to Hawaii, as they are currently rated #1 for adult autism services in the country. Dude could spend his requisite seventeen minutes on the beach and ride horses all day. I’ve heard there are really pretty drinks there. A win-win for all.

The options for post-21 care swirl around in my brain, mostly when I’m in the car or running, the latter being where I process the best. I play around with the different options, but none of them seem so hot for the sixty or so years he’ll grace this earth after high school. If I’m being brutally honest with myself, he’d want to stay home with me, play his DVDs all day, organize a few things, eat, get out for fifty-seven minutes, and go to bed. Let’s just say our boy is very “paired” with us, and if he could stay here forever with us in this exact house, he would. Since my plan of living until he’s eighty and I’m a hundred and sixteen (with the two of us sliding into the great unknown holding hands together) doesn’t have a chance in hell of coming to fruition, I’m left with keeping him here for several decades, then placing him somewhere in his forties when his parents are too damn old to care for him anymore.

Knowing my boy, I can tell you that option will not be met with a great deal of enthusiasm on his part.

Being honest (once again) I have to share that there is a big part of me that wants my freedom back too. I’ve always been very independent, entered that parent contract with the idea that at some point before I became relatively feeble I’d get a version of my pre-child life back. I’d like to go on one of those Viking cruises I see advertised on Downton Abbey, or sit in bed all day binge-watching my Sex and the City DVDs. I’d like to schedule my mammogram appointment at sixty without having to worry about child care.

Yes, I know, I have grand aspirations.

I’m a problem solver and a planner, and it irritates me to no end I can’t “fix this,” come up with some grand solution that works for all. The only thing I know for sure is that I don’t want Zach responsible for his brother, as I think he’ll face his own challenges in life. Although I hope he plays a great part in Justin’s as he does now I want him to have choices, hope for him he’ll have the freedom to live wherever he wants.

Hopefully he’ll come back and visit once in a while. Fingers crossed.

I know some of you are probably thinking I’m jumping the gun on all this as it’s eight years away, but I swear just yesterday I was cold-calling every district in New Jersey from DC to figure out where we’d be moving to so our son could start a pre-school program where he’d get a one-on-one aide, and I know how fast the time goes. Hell, it seems like it was just New Year’s eve and we’re practically in February.

It will go fast.

And here’s the thing. He’s awesome. Yes, I know I’m his mother and I’m supposed to feel that way, but he really is. His school loves him. His therapists love him. When he’s not in the throes of his OCD he is an absolute delight. He adores his school which to me is the educational equivalent of Disney, where magically he is happy 99% of the time, is safe, learns, and has fun. There are literally no conflicts there (I said it was magic!). Other than horseback riding, it is the best part of his life. I want him to have a continuation of that beautiful brand of love and fun for his remaining adult decades on earth.

I don’t want that to be over when it’s time to kick him out.

So I’ll wait, and perseverate, and perseverate some more, and hope some fantastic options spring up in the next decade that involve moving to a warmer locale that Justin will think is fabulous too.

 

Here’s to hoping.

Follow me on Facebook at Autism Mommy-Therapist

March 7, 2016

Transition

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:34 am by autismmommytherapist

Summer 15 043

This past week a momentous event occurred when the principal of Justin’s school called out of the blue to speak to me. Of course as soon as I saw the caller ID my stomach dropped as I waited to hear whether he had a fever or the stomach flu, because that always seems to be the case when his wonderful school calls. But this time, the universe gave me a pass. He only wanted to talk about Justin’s future.

It seems my boy is growing up and moving on to a middle elementary classroom. How that happened when just yesterday he was a toddler is beyond my comprehension.

I was invited in to see the classroom, and I made the appointment eagerly. Of course I also had to deal with my reluctance for him to leave his current classroom/teacher (I get attached) before the end of the school year, as I usually need time to mentally prepare for any changes for Justin.

Ironically I think he handles big changes better than me.

Justin is in a fantastic private autism school, one that has fit him like a glove since he was seven. I have absolute trust in the educational decisions they make for my son, so I was confident going in that I would like his new environment.

I was not disappointed.

Justin is non-verbal for the most part, but academic. While he is far from a seventh grade level he can read, do simple math, does phonics and spelling, and is a whiz on technology (seriously, he is better than me at some things, which isn’t doing him justice). It is very important to me that he stay on an academic track, not because he will go to college or live independently (he won’t), but because this is his opportunity to learn, and he enjoys it. So I went in hoping he would continue in this vein, and be surrounded by peers doing the same.

And to my delight, he will be.

Justin will be on the younger side in this classroom, and as I looked around at the teenaged boys comprising this new classroom I was so relieved to see them working with an aide or independently as well, and that they all most importantly seemed happy. His new teacher seemed adept at the organization required to run eight independent programs (my hat off to her,) described outings they would take, and told me about the general demeanor of the classroom, which from what I could see was positive.

Positive for Justin is key.

I spent about twenty minutes in there, then had a brief conference with the principal afterwards. He promised me Justin would get to visit the classroom over the next few weeks and that his new teacher would be able to observe him in his current environment. The former will be crucial to Justin because he will have to be made to understand that this is his new room, and it may be difficult for him to transition to a new locale after working in the other one for six years.

Hell, it would be difficult for me.

I’m confident that he can handle it. He’s come so far from the five-year-old who had a sit-down strike on the sidewalk of his new school after having been in an out-of-district placement he loved for two years (my husband followed his bus that morning, he said his stamina was quite remarkable.) He’s shown a flexibility I would have died for years ago, has achieved huge milestones in self-care and in sleeping in a bed not his own (thank God for Disney), and has accepted change in myriad other forms with little resistance.

In a nutshell, he has made much more progress in the last few years than I ever would have thought possible.

And it struck me as I pulled out of the parking lot of his school, still awash in the glow of what’s next for my boy, that I’ve often forgotten over the years that autistic kids mature too, even if it may not be on a “typical” timeline, or one of our choosing. When things have been stressful over the years I’ve often felt stuck in whatever difficulty we’ve been experiencing, whether it be his insomnia, refusal to eat, an aggressive phase, or a religious adherence to OCD. I’ve have forgotten that most of these struggles are cyclical, and eventually stop. I’ve forgotten in the past that Justin matures too in his own way and on his own schedule, and that many of the things I’ve worried obsessively about have eventually just disappeared.

I’ve often not seen the forest for the trees. I wish I had.

And as I do my careful merge onto the parkway I remind myself that I truly have so little control over anything (this will continue to irk me to my grave,) and that so far things have had a way of working out, even if they haven’t been my plan A, B or even my plan C. I have to remember to revel in the times where things are good, to enjoy the “sweet spot” that we’ve generally been in the last few years. I have to remember that despite his severe autism, my son loves his life, is productive, safe, and happy.

And I have to remember to be happy too.
Follow me on Facebook at Autism Mommy-Therapist

January 27, 2016

When Will I Know?

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

IMG_5049

Ah, the silence.

Today marks the first day since Friday that both kids have been in school, and I admit, I really needed them to go back. Even Justin was desperate to return, handing me his shoes yesterday morning and getting out his backpack (his school ended up with a delayed opening, and although my home district was closed and not busing that day I actually spent two and a half hours driving him for four hours of school, and it was worth it.) Despite trying to engage him in the house for three days straight ultimately he was bored, and the smile when his aide came to the car to get him was everything.

Dude loves school. And yes, I know how lucky I am.

Of course there are only so many movies we can see or games we can play (or food Momma can eat,) so by day four we were all a little stir crazy. In the winter there isn’t much to do with Justin other than take him out to a restaurant (which is a win-win for both of us, as my snow day mantra is simply “cook-clean-eat”). Unfortunately so much time off gives me time to perseverate, at which I am gifted (despite my attempts to remain in the present my abilities are relentless). I start to go down the post-21 road, unravelling the adult autism world puzzle that is still eight years away but which I know will seem to be here in about five minutes.

Okay, a slight exaggeration but I hear the teenage years go fast.

The truth is I’m not really sure what I want for him. I have friends who have worked very hard to make sure their adult son is engaged in activities most of the day at his group home, and another one who has created a very positive “life of leisure” for her two adult autistic children in their home. All three individuals are thriving in their respective placements. And honestly, I just don’t know what’s right for Justin.

My big question is, when do you know?

Justin is predominantly non-verbal, but that doesn’t mean we don’t know what he likes and wants. He makes it very clear when he’s both pleased and displeased with something, and it’s apparent that he’s mostly pleased when he’s in our home, either organizing, playing on the computer, or rewinding the same segment of a video on his DVD player a million times. When he’s home it’s mostly leisure time for him except when he plays academic games with me on the computer, but since he’s in school a good portion of the year (his school has eight weeks of summer school which is a complete sanity saver) I feel he has a full and productive life, with work and play beautifully comingled. There’s a nice balance for my boy, one he really responds to, one which has made him a mostly happy kid.

And my challenge is how to create that balance, how to figure out what is the right balance down the adult road.

I know some of you who are reading this with adult autistic children are probably thinking I’m crazy to think I’ll actually have options, as the landscape for autistic adults isn’t particularly attractive at the moment. But I have to say I’m seeing some change, albeit slow change, and it gives me hope. I’m hopeful that my biggest problem will be to have to make choices for him- should he work, how often should he work, or should he just “be?”

I’m happy to say that in the twelve years since he’s been diagnosed there haven’t been too many times I haven’t known the right path for him, and with autism that’s pretty remarkable. Somehow with each fork in the road there was a little (often nagging) voice that told me what to do, and as I look back at our choices I have to say I have few regrets.

So as we start this transition process in a handful of years I’m just hoping that I’ll know what to do, that my little voice will guide me, that the options will be there and waiting for him.

Here’s to both knowing, and to hope.

For more on my family visit my blog at autismmommytherapist.wordpress.com
Follow me on Facebook at Autism Mommy-Therapist

March 24, 2015

Transition

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

Justin's First Digital Pics 056

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

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

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

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

to do so.

What does my boy want to do with his life?

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

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

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

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

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

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

Follow me on Facebook at Autism Mommy-Therapist

June 7, 2013

Our Wedding Day

Posted in Life's Little Moments, My Take on Autism tagged , , , at 12:09 pm by autismmommytherapist

Easter 2013 004

My youngest son and I got “married” today.

Don’t worry, this blog hasn’t been the prelude to some twisted reality show. Zach is fully aware he can only be my “husband” while his daddy is away on a business trip, comprehends that relatives can’t tie the knot or have children together (I’ll leave ancient Egypt for a future discussion).

I will be his temporary “bride”, and he will insist on a full-fledged ceremony including the fake flowers at the bottom of our stairs, and rings to boot.

My boy knows I like the bling.

We exchange vows in utter seriousness. He promises to listen to me (really, shouldn’t that be a staple of any groom’s vows?), clean his room, and be good to the daughter we had out of wedlock plus the other four children to come (so glad this is imaginary).

I in turn promise to cuddle with him when we read our books, make him do things for his own good (not his favorite vow), and cook him his favorite chicken on demand (this one is not happening). We conclude the ceremony with a kiss, and he immediately asks me to get him some juice, forgetting to say please.

Clearly I have some work to do when it comes to this marriage.

We retire to the family room for our “honeymoon”, snuggle into the couch with “our baby”, and I proceed to spin a story for us all that will hopefully be deemed “wife-worthy”. He sinks into my embrace, still somehow fitting perfectly into the crook of my arm and yet not pushing me to the carpet.

I inhale the clean scent of baby shampoo as I lean down to kiss his head, am reminded that our mid-day interludes will cease in a few months as he attends his first full-day program, how this is bittersweet for both of us.

I am halfway into our tale and he takes over as he often does, and as always I am impressed by his creativity, his ability to see things from a perspective that never would have occurred to me. I think back to all the articles I read ten years ago when my family was first beginning this journey, the ones that said autistic people are completely literal, lack imagination, have a dearth of creative capacity.

I think of how I might have embraced that opinion but instead chose to ignore it, as I have done with so many articles whose authors seem to set limits on what people with autism can do. I am aware my sons have limitations- we all do. But such broad generalizations can be so damaging, and I’m so glad I was able to transcend them, to always help stretch my sons to their greatest capacities.

Soon my small son finishes his tale, and tells me he wants to turn it into a puppet show, just like the one we recently watched. I remind him we don’t have marionettes and he responds “no problem, we’ll make them”, and I know we will, and they will be wonderful.

I know he too is wonderful, with his fertile mind and his quest for knowledge, his boundless curiosity which translates into unlimited creativity. He shatters stereotypes just by being who he is.

And I remember, as I often do, just how grateful I am that he is mine.