August 18, 2016

How Far

Posted in Life's Little Moments, My Take on Autism tagged , , , at 12:56 pm by autismmommytherapist

Justin Turns Ten 020

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.

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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

Posted in AMT's Faves, Fun Stuff, My Take on Autism tagged , , , at 9:54 am by autismmommytherapist

Summer 15 097

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

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:21 pm by autismmommytherapist

Justin's First Digital Pics 059

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

Posted in My Take on Autism tagged , , , at 10:13 am by autismmommytherapist

Zach Arrives and Justin 4 089

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

Posted in Life's Little Moments, My Take on Autism tagged , , at 9:53 am by autismmommytherapist

Autumn 08 066

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 tried. Sometimes I even succeeded.

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

Posted in Life's Little Moments, My Take on Autism tagged , , at 10:24 am by autismmommytherapist

Zach in a Bath 014

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.

Soon we must move apart as we walk through our morning routine, but for these few minutes the world is just us, no demands, no noise, no time table. I breathe him in, and think about how much I thought I knew about autism thirteen years ago was (at least in regards to my boy,) wrong.

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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June 28, 2016

Make New Friends

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 11:08 am by autismmommytherapist

Easter Scouts Sci 16 077

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.

 And I realized as a mother of a severely autistic son and a high-functioning son (although I dislike both those terms), it’s important I have friends in both camps.

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

Rewind

Posted in Life's Little Moments, My Take on Autism tagged , , , at 4:39 pm by autismmommytherapist

Justin BD 2016 Scouts 044

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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June 13, 2016

Just Be

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

Summer 06 008

I just returned from a week in paradise. Please don’t hate me.

Last week my husband and I spent a week in St. Lucia to celebrate our 20th wedding anniversary. There were the usual ups and downs of any trip- a delayed entry to the island, being flooded out of our room the second night, a day lost to torrential downpour.

And none of it mattered, because we were together, childless, and given the priceless gift of relaxation.

I’m very fortunate that my mom is able to watch the boys for that length of time, and grateful we were able to sneak away. It’s been years since we’ve had the opportunity, and I could tell we really needed it. Of course being me I had to spend part of my week thinking about things (even being on a lush tropical island doesn’t preclude me from thought.) I subsequently realized a few things of importance while chilling out on my lounge chair. First, I acknowledged that in the past it would take me two days to truly relax, and this trip I got into the groove before the door even closed on our way to the airport. This is entirely due to the fact that as they’ve aged the boys have in general gotten easier.

Yet another thing to be grateful for, along with nice men bringing me pretty drinks on the beach.

Second, and most important, no matter what Justin’s living arrangements are after high school, I have to figure out a way for Jeff and I to have the opportunity to simply be. Whether he continues to live with us, or resides in a group home or shared living experience, Jeff and I will need a break.

We all need a break.

As I’ve mentioned before Justin is only thirteen, so we’re a presidential term away from serious decision-making- where will we live after both boys graduate, where will Justin reside, should he work or have a life of leisure. I don’t know what we’ll do yet, but for once I stopped perseverating about everything and let go, allowing the prevailing island attitude of “just be happy” wash over me without the tidal wave of worry that often accompanies most of the big decisions I encounter.

And I am determined to retain this attitude no matter what comes next.

I won’t blame autism for making me a worrier- I’m a fourth generation perseverator, and as my mom says, I come by it honestly. When not engaged completely in having fun I’ve been known to get a good worry on, a condition which was exacerbated when Justin turned six months old and started spinning everything in sight.

Spinning is not included in any copy of the “What to Expect Your First Year” book.

But over the last few years as things have started to ease a bit, and in some cases a lot with both boys, I’ve been able to lay down that mantle of anxiety and be more present, enjoy what’s in front of me, and not think about the future so much.

Trust me, for me this is a major milestone.

And that’s the key to everything. The truth is worrying hasn’t made anything along the way any better- in fact it’s made some things worse. The fact is I have very little control over anything, and while that used to terrify me, I’m coming to see this as a benefit. I can only do my best, things will play out as they will.

As long as chocolate and wine continue to be in my future, things will be okay.

So as life hits me, and it will, I have to remember to go to my new happy place. It’s a particular lounge chair with a stunning view, a prevailing wind just strong enough to cool me down, and the ability to relax and take things as they come.

Here’s hoping it sticks.

 

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May 30, 2016

Get Out

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , at 4:19 pm by autismmommytherapist

Justin BD 2016 Scouts 028

Recently I spent twenty-four glorious hours in DC, my former stomping grounds of fifteen years. I ate Indian food, and spent hours chatting with my bestie. I got a blister walking into Georgetown, and waved to President Obama through the White House fence at night. My friend and I abandoned our kids and husbands for one fabulous weekend, and we plan to make it an annual event.

And Jeff managed an entire day-and-a-half on a weekend with both kids without help.

I’ll say it again- he managed for a day-and-a-half on a weekend without help.

Many of you who don’t know my husband may be doubting the competency of an individual who can’t watch a teen-ager and a nine-year-old for thirty hours without assistance, but my boys both have autism (my eldest is severe), and that can make things difficult sometimes. Both Jeff and I have found it challenging (sometimes that’s an understatement) to make it through an hour much less an entire day with the boys, and I’m a former educator who managed classrooms of thirty children with relative ease. There were entire years if one of us had something to do in the evening (usually it was a PTA meeting, nothing too exciting unfortunately) we’d literally have to have a sitter help with the bedtime routine, as we didn’t feel it was safe for one kid to be unattended while we put his sibling down.

As you can imagine, we didn’t get out much.

But I would say in the last two to three years there’s been a subtle shift toward independence in our household, with both boys maturing, and dare I say it, becoming much easier to manage. Three years ago I would have been able to pull off two week days in the nation’s capitol, but never a weekend, much less both weekend days. Three years ago I wouldn’t even have asked, knowing most likely complete havoc would have reigned chez McCafferty, and my little excursion to DC would have died an untimely death.

To see this one particular friend who’s flying in for our “event” we now need to see each other on a weekend, and I feel confident we can make this happen annually.

And I cannot tell you how utterly liberating this realization is to me.

I wrote this today for any parents of autistic children (or hell, any children) who may feel “stuck,” who are watching the parameters of their lives lessen, who feel the walls closing in on them. I can’t promise you it will get better, because everyone’s definition of “better” is different, and of course I don’t know your child or your family.

I will never make promises on this blog that I can’t keep.

But I will say this. You feel like you still want a life? Don’t give up. You need a night out with your hubby but you’re afraid to leave your kid with a sitter? Find someone you trust, work up to an evening out, and do it. I know most of us autistic families aren’t exactly rolling in extra funds, but one of the best ways you can be the best parent to your child is to take care of yourself.

I’ll say it again. If you want to be the best possible parent to your child you have to take care of yourself.

And that includes having fun.

So do whatever it takes, take up that nice neighbor on her offer to babysit, and go. Enjoy yourself. Have a drink (or two.) Eat too much. Put your child on the back burner for an hour or two and remember who you were before children came into your life. Recapture how much fun you used to be.

No matter what, just get out.

 

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