November 26, 2015
Several weeks ago I had the good fortune to travel to Disney (which, in keeping with today’s theme, I was very grateful to do.) On our way down I sat next to my severely autistic son who gently rocked his way to Florida (I swear he helped with the momentum,) who behaved beautifully throughout the entire flight and put all my fears to shame.
Since I was able to relax (!) on the plane I got to thinking about how grateful I am for my two autistic boys, both for the joy they bring me and my husband and for the way they’ve stretched our thinking about so many things in our lives.
Here are my top ten reasons for gratitude this Thanksgiving. My wish is that you and yours have a wonderful holiday as well!
I am grateful for Justin’s incandescent smile when all is right in his world.
I am grateful for Zach’s passion to help others.
I am grateful every day for how hard Justin works to communicate with the world.
I am grateful for the way Zach introduces Justin to friends as his “brother with autism” like it’s no big deal.
I am grateful that Justin shatters stereotypes about autism every day.
I am grateful for the friends I’ve made in the autism community whom I would not have known if my boys were not autistic.
I am grateful that even at twelve Justin still fits in my lap for his bedtime story each night.
I am grateful for Zach’s unique world view.
I am grateful for the way Justin makes me slow down and live in the moment
I am grateful for the boundless affection the boys show one another.
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November 24, 2015
I am a planner. There will never be a line in my obituary stating how often I “winged it.” It’s just who I am. And never did my Type A personality flourish more than when it came to planning for our latest Disney sojourn.
I will begin with sharing with all of you that I consider Disney a “working vacation,” and whether you’re considering a trip with disabled kids or not I strongly suggest having wine on hand at the end of the day.
Lots of wine.
In addition to the grape I’m also strongly recommending you have a plan, and I’d like to share my tips with all of you today (including times when Disney broke the rules for us, woohoo!) so you can have THE BEST DAMN TRIP TO DISNEY EVER.
Which thankfully, is what we had.
I went into this trip with (for me) fairly modest expectations for our eldest son with severe autism, as the last time we went he spent the entire trip grabbing me every five feet and uttering the syllables “aha,” which translated into “Damnit take me home woman.” Florida being a wee bit far from Jersey, we couldn’t accommodate his wish for three days, and his displeasure was made known. The poor kid was also under the weather a bit, and that coupled with being in an entirely new state (he only leaves Jersey to go to CHOP) and sleeping in an entirely new bed (which happens exactly never) he was a mess. So as we boarded the plane two weeks ago with a healthy child I kept every extremity crossed and hoped for the best.
This time, Momma got her reward.
He was delighted, and delightful, and I attribute much of this to his (thank God) innate desire to be happy, and to precision planning that rivals Martha Stewart.
And it all began with a phone call.
In the last few years Disney has changed their disability pass program at least two times that I know of, and added the additional perk of offering three free fast passes with every ticket, a wonderful option not available to us two years ago. The fast passes you can book sixty days in advance if you’re staying on a Disney property, thirty if you’re not ( you would need to have your tickets in advance and create an account on “mydisneyexperience.com” or speak to a live person at Disney to do so.) You can also walk up to kiosks in the park and add or change a fast pass selection, which I would only rely upon if the park was not crowded as the wait times may be long. There is also an app you can download onto your phone that tells you all the wait times of the rides (so fabulous!). I did find the fast pass lane to be longer than it was two years ago when not everybody had them, but even on the one day we were there that the park was at a 5 for capacity (it goes up to 10,) that option was doable for us.
The disability pass program is set up so that in order to gain access to the fast pass lanes on rides for which you are not using your fast pass, one person in your party must walk up to the desired ride, and get an attendant to put a ride return time on the pass which has been issued to the person with the disability (the person with the disability does not have to be present too.) At Magic Kingdom we acquired this pass at Guest Services in Town Hall, and all members of our party had to be initially present to be included. The time to return to the ride will automatically be assigned to every member of your party who is on the pass.
And then the fun begins.
Prior to actually heading to Florida I mapped out an idea in my head of what rides would need a fast pass or disability pass time, and I tried to match them up geographically so my husband (who was our designated runner, he was so cute) didn’t have to traipse all over the park all day. I had a plan, but decided to talk to a live person when we were thirty days out from our trip just to make sure I would be maximizing our passes to their fullest potential.
I spent an hour-and-a-half with a mom of an autistic son (bonus!) and discovered how many ways I’d been wrong.
My lovely contact was able to look at the projected capacity for each of our two days at Magic Kingdom (there’s an app for that too,) and as such was able to plan with me which rides really needed the fast passes (totally different from what I had thought),) which rides would be a good call for the disability passes, and which I’d probably be able to walk onto (which had not been an option the last time we were there due to the crowds.) She helped me coordinate so we weren’t running all over the park to get our disability ride times, and helped me build in lunch and bathroom breaks so that we weren’t stressed. I was also told that with the fast pass you have a one hour window to complete your ride, but with the disability pass you can go on that ride any time after your assigned time, there is no expiration. She also informed me that you can’t keep booking disability passes continually, that you have to complete one disability pass ride before you book the next.
With all of that information, on our first day in the park we were able to eat a leisurely lunch, take potty breaks, actually enjoy the park, and go on twelve rides in seven hours without stressing out.
Yes, I’m trotting this out now- it was magical.
We had a few nice perks happen to us while we were there as well. The first day we acquired the disability pass in Town Hall (and this only works on the first day) the lovely Disney rep actually booked our first disability pass ride for us although she technically wasn’t supposed to, which meant my husband didn’t have to hoof it to Fantasyland when we were planning on exploring Tomorrowland first. Our last day there we actually added three more people to the pass even though the capacity is supposed to be six (we had to physically add them to the disability pass when they arrived.) The people at Guest Services could not have been more accommodating, and our wait time each time we went there was minimal.
In other words, they broke the rules a bit for us, and it really, really helped.
Here are a few other tips that helped make our trip great, particularly for a child with severe autism. My youngest son has a gluten allergy, so we researched which restaurants had gluten-free options and hamburgers (which he can eat without the bun) in all five sections of the park so we would have options no matter where we ended up. We also ate at eleven each day (I know that’s early, but Justin had me up at 4:00 AM each day ready to go (woohoo!) so frankly I was starving by then.
I can miss a few hours of sleep, but not a meal too.
Since we were not staying on a Disney property we avoided going to Magic Kingdom on the “magic hours days” (when Disney opens the park either earlier or later or both for guests staying on property) and just made it to the gates about half an hour before each day’s scheduled opening. We also looked at the traditional crowd capacity for each week in November (a great month to go,) and picked days that were generally less crowded (Veteran’s day was the exception, but even that day wasn’t too bad.) We had been contemplating going to Hollywood Studios so Zach could try to make it into the Jedi program, but checked it out ahead of time to make sure it was still operating and found out it wasn’t, which changed our entire plan.
Thank God I checked. Nobody tells Zach he can’t be a Jedi.
And finally, if you’re traveling with a kid or kids with autism or any other disability, I can’t recommend enough speaking to a live Disney representative to have them help you plan your trip. It made our experience so much better, and saved me the stress of having to ask myself every five minutes where we were going next and where was the wine.
Just kidding on that last part. Sort of.
If you’re planning a trip to Magic Kingdom in the near future I hope these hints help, and I hope you have a wonderful time. We worked hard to plan for this vacation (including taking Justin on a flight simulation years ago before our first trip,) and it really worked out.
We laughed, we made indelible memories for our family, and we didn’t lose either of the kids. It was simply fabulous, and I’ll throw this out there one last time.
It was magic.
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November 19, 2015
If I could only say one thing about our Disney trip (God forbid!) it would be this: autism anxiety 0, massive amounts of fun, 1 (I should really say a gazillion, but I’m trying to remain traditional here.)
Last week the McCafferty tribe, along with our host, Grandma, and my lovely sister-in-law, descended upon Orlando for the second time in full force. Our previous trip two years ago had met with mixed success. Zach was so enthralled he cried when we came home and said he wanted to go back, but Justin, our severely autistic son, who was slightly under-the-weather, was mostly miserable. We spent most of the trip watching him clutch one of us every ten feet or so and say “aha,” his word approximation for “home,” and the sparkle that usually resides in his eyes was absent. I chose to chalk up most of his discontent with his illness, and some with the anxiety that a break in routine brings to him. I knew the true test would be our next trip, and I’d have to wait to find out if my guess was correct (waiting not being my forte, I was annoyed.) It turned out, for once, I was right.
Justin was absolutely amazing.
He weathered both plane rides like a champ, rocking back and forth to comfort himself (we always plan to have a family member sit behind him,) frequently smiling and looking out the window with glee. A few times on the way back to Philadelphia he said his sounds for “home,” and when I reassured him that’s where we were going his face was incandescent.
My boy gets it.
There were, of course, difficult parts of the trip. Our first night Justin woke up at 3:00 AM with stomach issues and he couldn’t get back to sleep, so we were a wee bit tired for Legoland (but frankly it was so damn hot that one day we didn’t much notice.) He continued to wake up by 4:00 each morning we were there, but since I was crashing from complete exhaustion by 9:30 each night (McCafferty mama really lives it up on vacation) his early awakenings weren’t much of an issue from then on. Our first morning he kept handing me his shoes and cried for a while, but once we reassured him he was going to have fun he got over it, and we had a fabulous day.
And this time he adored the Magic Kingdom. The smiles, the giggles, the look on his face in “It’s a Small World” are emblazoned in my memory forever.
Perhaps some of you are thinking that it must be nice to be able to take a severely autistic kid on a vacation when you are dealing with insomnia, eating issues, aggression, or all of the above and more. I’ll be happy to share that we’ve been there too, with some of the issues lasting many years. Believe me things are often still challenging chez McCafferty, but we’ve weathered many storms over the last twelve years, and through therapy, luck, and mostly Justin’s own maturation process and love, we’ve come to a much better place.
A place where I felt comfortable taking my boy on two plane rides and having him sleep somewhere not his own bed.
I can’t tell you what it means to me to have a family vacation where both of my kids actually loved their stay. I adored seeing Zach’s excitement over every ride, but in truth, I was even happier to give this experience to Justin. Planner that I am, I’m always thinking ahead to the day where Justin will have to take one giant step out of his comfort zone and live without us. Frankly, the fact that he could handle five days in another state with new experiences and at least somewhat sleep there is thrilling to me. Over the years to come I’m going to have to continually stretch my boy, and his reaction to this giant departure from his daily routine is greatly encouraging.
It gives me hope.
In my next and final post about Disney (I swear!) I’m going to write about the new disability pass system that Disney is now employing. I’ll tell you how to get the most out of piggybacking the pass with your three complimentary fast passes (this will include a description of how much I enjoyed watching my husband run to get the disability pass times for us.) I’ll share with you how my type A personality flourished, and perhaps you can break our record (twelve rides in seven hours WITH a lunch break) and not kill yourselves doing it.
I’ll be back. And I want to say a special thank you to those of you who follow me on Facebook. Your support and joy at Justin’s own joy were priceless.
And as I mentioned in my last post, this time, I kept some of that magic for myself.
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November 3, 2015
Two years ago this fall my tribe got up in the wee hours of the morning, headed to Philadelphia, and boarded a plane for Orlando and Disney mecca. I honestly thought we’d planned for everything (I think I had a Plan Z). Our preparation ranged from my creation of a Disney social story for Justin, to having him run through a flight simulation that did everything but take off from the runway. I planned, and I planned, and I planned some more.
But I couldn’t plan for the stomach virus that got Justin on the plane (!) or the fact that every five feet in the Disney parks my firstborn would stop, grab me, and say “aha,” his version of the word “home.”
Unlike Disney, I am not magic.
We’re gearing up soon to go again, and I will share with you that this time, I’m hoping for more for Justin. I know some of you are probably reading this thinking how nice it must be that my major concern with my severely autistic tween is that he enjoys his vacation, and I get that. I know that many of you are wondering how you’ll get through your child’s self-injurious behavior, aggression, insomnia, inability to communicate, lack of appetite, too much appetite, and I could go on and on, hell, and on. Worrying about a vacation seems like a luxury that few of us can afford.
But I want you to know I’ve dwelled in all of these places too, sometimes for months, sometimes for years. There were times I thought we’d never get through them, but we did. Through many years of therapy, consistency, love, and just plain luck we finally made it to a place where I can perseverate on my son finding joy in our family vacation.
And it’s a beautiful place to be.
So in a few days we’ll board a plane with every electronic device and light-up/spinny toy we’re allowed, and hopefully we’ll settle in to that reasonably short flight and it will go off without a hitch. I’m hoping that “aha” won’t even be a part of Justin’s vocabulary because this time he’ll understand that we’re not relocating to Disney (oh but that sounds fun), that home will soon be within reach. I’m hoping that my boy shows the same excitement at Disney that he does for the rides at Great Adventure, that some of the magic of the place will rub off on him, that he will be able to keep his anxiety at bay and enjoy his time there.
I’m hoping his mother can do the same too.
So please wish us luck, and I will update you on how we did, plus share with you how successful my “Type A” plan to get on the most rides possible at Disney worked out.
I am always a girl with a plan.
And maybe this time that girl will find some magic there too.
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October 27, 2015
Recently I had the chance to attend my 30th high school reunion (how that is possible when I am still sixteen I’ll never know,) and I have a confession to make.
I liked high school.
I know there are probably many of you rolling your eyes right now at the fact that I both enjoyed those four years and am happy to see my classmates every half decade, and I’m truly sorry if you didn’t have a great experience. I grew up in a small town with a graduation class of just over two hundred, and many of the people I saw that Saturday night I’ve known since I moved to Fair Haven when I was six. These are people who “knew me when,” who remember my parents and my brother. More importantly, they knew me when life was relatively simple, before autism came calling to my household.
They knew me when I was still fun.
I have to admit there were months (hell, years) after each of my kids was diagnosed that that fun girl went into hiding. I pretty much lived in fight or flight mode for a long time after my kids received their autism labels, completely caught up in therapies, dietary supplements, insomnia, and what seemed each time like an inordinate amount of crying (both theirs and mine.) Fun was not even on my radar during those periods. Survival was paramount.
And as I’ve slowly emerged from that dark place (twice!), I’ve found over the past few years I’m remembering who that girl was. Or I should say, who she is.
And I’ve decided she’s going to stick around.
I’ve learned over the last twelve years living with autism that almost everything with the boys is cyclical. I’ve been told this is true with typically developing kids, but I would argue that most of the unpleasant aspects of child rearing most parents experience don’t last until our kids are eighty, so I think I have a different perspective than 98% of the population. In truth, one of the hardest aspects of living with two kids with autism for me has been accepting that some issues will never go away. Even harder than that has been my learning to let in hope even when our situation seemed devoid of it, to entertain the possibility that whatever strife we’re experiencing might eventually dissipate, or disappear. When we’re going through a difficult period I’ve learned to conjure up those triumphs, to cling to them, to remember things usually do improve. More importantly, I’ve learned to take better care of myself.
And as insignificant and silly as that may seem, that includes getting out and having fun.
Whether you’re in that interminable wait period to see a developmental pediatrician, or you’ve just received a diagnosis, or your teenager is now combining puberty with autism (!), make sure you take care of yourself. Whether it’s yoga, a drink (or two) out with the girls, prodigious amounts of chocolate (one of my faves,) or simply staying in bed and doing nothing, carve out time for whatever pampers you and makes you happy. It may seem impossible if you are totally overwhelmed, but do whatever it takes to make that fun happen. Find that girl (or boy,) the one who stayed up past ten and didn’t have a plan B (and C) for every situation with their child. Find that person who embraced life and banished dread. Find that person who envisioned endless opportunities lay ahead of them.
Find your fun.
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October 19, 2015
This past summer was huge for chez McCafferty. My youngest and mildly autistic son learned how to ride a bike independently without training wheels, much to our collective thrill. My oldest severely autistic son lost ten pounds after I semi-restricted carbs from his diet (please, it’s always the carbs,) which resulted in him having a healthy weight again. My beloved and not much older than me brother-in-law had a heart attack, an event which made everyone in our family rethink some of our habits, and for me, inspired me to think about what I can do better in my life.
Believe me, the list is pretty long.
But one thing that stuck with me is I need to remember to notice the little increments of progress my sons make, not just the splashy accomplishments like bike riding and losing a clothing size, but the little things too. They’re the bread and butter of life, and too often I just notice them and forget, don’t take the time to really appreciate how far we’ve come.
And a few weeks ago I got the opportunity to put my new goal into practice.
It was my lovely niece’s birthday celebration this Sunday, which resulted in a trek to Pennsylvania with the boys and the two tons of stuff they require for an approximately two hour visit. Over the years I’ve come to regard these PA pilgrimages with a mixture of both excitement and dread. I actually like all of my husband’s family (my sincere apologies to those of you out there who don’t enjoy your spouse’s relatives,) so there’s always the anticipation of seeing them tempered with the reality that I will probably be spending most of my two hours chasing Justin around the house and keeping him from reorganizing everything.
Since my sister-in-law doesn’t need any help in that department, it’s a daunting task.
So on Sunday I mentally prepared myself for a work-out with my eldest, and was pleasantly surprised, then shocked. It seems that over the summer Justin acquired the patience to sit on my husband’s lap while his cousin unwrapped all of her gifts (he only tried to help himself twice.) He sat compliantly at the dining room table and did his “work,” an ingenious shelving system filled with activities that his school BCBA created for me for just these situations. Hell, he even gave hugs this time (and trust me, except for his nearest and dearest, that’s a huge milestone.)
Granted, he only sat for two-and-a-half minutes for a dinner he didn’t want then handed me his shoes to go home, but I can’t expect perfection.
For once, I got to put my new goal into practice as for a twenty minute period (!) I actually sat with a glass of wine while my niece “oohed and ahhed” and my two kids were either ensconced on my husband’s lap or quietly reading a book. I noticed and registered that blip of time for what it truly was.
And I just want to say this. For those of you who are just finding out your kids are on the spectrum and are going through a hell of a time, this story may sound impossible to you for your own kids. Honestly, if someone had told me two years ago I’d be at a party checking out my niece’s stash while simultaneously sitting down for more than thirty consecutive seconds I would have said they were nuts.
And I would have been right.
But as the boys age some things are getting easier. Not everything- not by a long shot. After years of struggle they both eat. They both (mostly) sleep. They do their work and delight me daily.
They are both truly happy.
And as we ease our way into a simpler life I’m taking note of the progress, wrapping myself in it and reveling.
And I hope wherever you are with your family that you are able to do so too.
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October 14, 2015
This past Sunday I had the good fortune to hear our pastor deliver a sermon entitled “Be Calm,” which frankly should be my mantra as I navigate the autism world with my two sons. I sat up a little straighter in my pew to take in his words, receptive as always (although perhaps not in practice) to any suggestions that will help reduce my sometimes chaotic life.
He related to us a story of how he had traveled to north-western Kenya several decades ago to visit a mission, and shared with us one of the most terrifying moments of his life. He was visiting his brother-in-law who had befriended an African there, one who greatly desired to show both men his treasured family farm, sixty kilometers and an extremely bumpy ride away from where they were staying. This was a remote place in Kenya, and for point of reference the sixty kilometer drive was more than four hours in the opposite direction of the nearest phone.
After a ride through the jungle that only a native of the land could navigate the three men finally stopped, and their guide explained to them that it would now be another hike up a steep mountain to actually reach the family farm.
Our pastor, reeling from jet lag, time changes, and the relentless heat declined to make the final journey, encouraging his brother-in-law and his friend to go on without him. They did, at which point our pastor was left with a locked van and no idea when his companions would return. He felt completely isolated.
Isolated, but not alone.
Within minutes native Africans had appeared on the scene, and began gesturing and pointing at our reverend. After discovering that the van was locked (and contemplating why his brother-in-law locked a van when they were more than four hours from any type of civilization) he put his head in his hands, and the thought came unbidden into his mind that he might not make it out of there.
As he said, he was far from the familiar. Out of solutions. Out of ideas. Out of energy.
Out of hope.
Quite honestly in my autism journey with my boys I have felt all of those things, and I didn’t even have to leave the country.
Our pastor went on to describe how this experience lent itself to increasing his empathy toward other peoples’ obstacles, explaining that to him life appears a jungle at times. He described dense thickets of broken hearts, and empty wallets, both of which we have endured with our two sons. He invoked forests framed by hospital visits, and I couldn’t help but think of the dozens of doctor visits we’ve had in four different states over the last eleven years.
Although our minister pointed out that we don’t generally encounter the sounds of wild animals in our daily lives, I thought about how autism families often endure the complaints of other people when they brave the public with their autistic children, how our outings are sometimes devoid of compassion from others. He discussed how our creditors are our predators, and I thought back to the thousands we spent monthly many moons ago on our eldest’s home program when we resided in a state that offered us at most two hours a week of therapy to address the core deficits of Justin’s disorder.
I thought of other predators who steal our calm too. Our sons’ collective struggles with sleep. Their digestive issues and food aversions. The inexorable toll of my eldest’s need for ritual. The aggression that can rear its ugly head for no fathomable reason.
And worst of all, the predators who stole their happiness at times and left only suffering in their wake.
The sermon continued with the congregation being asked to imagine what it would be like to be rescued, to be safe, to have hope restored once again. Our minister encouraged us to search for that person with both vision and the direction to lead the way out.
And I will share with you now that back in the early days of our family’s struggles with autism I felt that loss of hope.
Instead of one person however, it took a village to lift me out.
Both boys’ diagnoses hit us hard, in completely different ways. Our eldest son Justin’s came about at seventeen months, after almost a year of noticing major differences in his development. At the time we lived in Virginia and had no family nearby, and the extent of my experiences with autism had been two former students who were only with me for homeroom. My husband Jeff and I didn’t know any other parents with autistic children, and in 2004 there weren’t a plethora of books written by parents on the subject (although there were a myriad of depressing websites.) Things were a little easier when our second son regressed from typical development at eighteen months as we were already relocated nearer to family and adequate Early Intervention services, but even then Jeff and I felt isolated, overwhelmed and alone.
But slowly, each time, we pulled ourselves out of that dark place. We asked for more help from family. We asked for more help from friends. I joined a support group. I made invaluable friendships with other autism moms who were going through similar trials, and made friends with those with older children who could advise me and lead the way. I read Susan Senator’s book “Making Peace with Autism,” which was the first account I’d found of a family whose child never shed their autism diagnosis but had managed to reach a place of peace.
I began once again to take care of myself, to address my needs.
Our minister mentioned that most of us never leave the jungle. He said that the dense brush of issues never changes- instead, we must change.
And I’ve found this last statement to be true. Our pastor said that when we are rescued (and I believe profoundly that we must also rescue ourselves,) that our loneliness diminishes, our despair decreases, and our confusion lifts. I have created a posse of people who lift me out when times are tough, but in the end it’s up to me how I look at my life, at both the limitations and gifts autism has bestowed upon my boys, and our family.
I found my calm.
And for any of you reading this who are just starting to navigate autism’s pathways, or have been in this for years and are in a place seemingly devoid of hope, please, find your person. Find your posse. Find your peace.
Do whatever it takes to find your calm.
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October 5, 2015
I admit, what I’m going to share with you now I’m doing so with fingers (and toes) crossed, summoning every “anti-jinx” spell my eight-year-old has ever conjured up. It seems the medication change Justin’s neurologist made ten days ago is starting to kick in, and the OCD that has relentlessly taken over his life the past several months is beginning to abate. It’s a reprieve for him, a reprieve from his near-constant misery as he tried unsuccessfully to angle objects throughout our home just so, to put things in places that made more sense to him but ultimately weren’t right either. His organizational obsession seems to have abated a bit, and we still have a week to go to see how fully this reprieve has taken effect.
I admit, it’s a reprieve for all of us too.
I get a lot of questions from people regarding my attitude towards my kids’ autism, most of them regarding how I manage to often find the silver lining in even the most distressing situations we’ve faced as a family. I could lie and just tell you I’m awesome, but the truth is I’m simply hard-wired that way, a gift from my parents. I am the girl who at nine was told her parents were separating and immediately envisioned how I’d be decorating my new bedroom, and how I’d probably get two family birthday parties now. Looking for the bright side has served me well, as the alternative really isn’t that appealing.
But I will share with you there have been times I’ve been so overwhelmed I can’t summon the energy to look for it.
I’ve gotten better at weathering these sometimes soul-sucking times. Over the years with our boys we’ve made it through extended periods of insomnia, intense gastrointestinal distress, severe food allergies. We’ve powered through my eldest son’s aggression which was undoubtedly the worst period both for him, and for us. We’ve dealt with impulsivity issues, and conflicts with friends. My husband and I watched as our youngest son stopped speaking over a period of three weeks and witnessed the light fade from his eyes. We’ve weathered it all, just as we have Justin’s extreme OCD the past few months.
It wasn’t until a few years ago I figured out exactly why all these issues hit me so hard, why sometimes I felt almost incapacitated by my sons’ suffering. Part of it was that they were in pain, sometimes physical, and that is a terrible thing to witness in your own child.
But part of it was in my mind autism is forever, and so this suffering must be too. Illogical I know, but at the time when my husband and I were just trying to make it through each day the weight of it all was suffocating, and there seemed to be no end.
And what I’ve learned after many, many years of enduring almost paralyzing cycles of difficulty, that so far (at least) just like with most neurotypical children, the difficulty will pass. It will most likely be replaced by something else (so
I’ve learned to fully enjoy the reprieves,) but whatever it is we’re enduring will come to an end.
I’ve learned to keep that mindset forefront when dealing with whatever my sons are going through, and I’ve learned equally importantly to take care of myself too. The latter is key. There is definitely a bit more down time, more frappacinos and just more fun built into my daily life.
A happy mommy is a happy family.
It’s not always easy to build in that time when we’re, as Susan Senator so beautifully put it, “under siege,” but I try. I also attempt on a daily basis when we’re not in the thick of it or not to remember the progress they’ve made, whether it’s reading a book out loud or learning to ride a bike without training wheels, or simply that the boys are mostly happy, enjoying their lives.
Recalling the good times, and remembering the cessation of the former bad ones, has gotten me through.
And I hope if you’re an autism family and you’re struggling, that this helped.
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September 29, 2015
Warning to my readers- this won’t be one of my typical “find the silver lining” type of posts. Today I’m telling it like it is chez McCafferty, and what it is includes a very tired Mom.
I have a feeling a lot of you can relate to that.
My oldest son Justin, who is severely autistic and also diagnosed with OCD, has been really struggling the past few months, and the last week in particular has been grueling. His struggles have gone hand-in-hand with triumph (I got him to lose fifteen pounds this summer and he’s on Risperdal, his neuropediatrician was a little in awe of me,) but our success has been tempered by his compulsive behaviors. Justin’s had OCD (and obviously autism) his entire life, but in general the OCD-like behaviors have been very manageable. They often included a bit of reorganizing, making sure a toy was strategically placed in a certain room, etc. We’ve been able to roll with it, and it hasn’t really disrupted our lives or his.
That is until reorganization became his full-time obsession, much akin to mine with chocolate.
This probably doesn’t sound so bad to you, but here’s the thing. He’s throwing things behind furniture (that often his short mom can’t reach.) My boy is putting objects under other objects so I literally have no idea where they are (like my phone, OMG.) But the worst is his almost fifty-year-old mom now relies on visual cues to do anything, and now things and important papers are entering the OCD Bermuda triangle and I don’t even know they’re gone and that I need them.
Trust me, I am a woman who relies on her visual cues.
We’re doing all the right things to counteract this behavior- redirecting to the computer, his DVD player, movies on tv, etc. We’ve been back to see his neuropediatrician, who has made a med change we hope will kick in within two to four weeks (or five minutes ago if I had my way.) But in the meantime it’s usually just me with him at home, and the problem is I can’t always stay with him for his redirected activities because of laundry/phone calls/making lunches/trying to find my phone that I hid from him.
Once again I wish wholeheartedly for the attractive Swedish “manny” to make his appearance.
But even though his reorganization tactics have wreaked hell on our household (he once threw out all my sticky notes, it was like the world ended,) the worst part is that when he’s doing it he’s miserable. There’s no satisfaction derived from him for angling a book a certain way on a countertop, or reallocating certain toys to different bins in our garage that hosts every toy he’s ever had from 2003 to date. He often gets upset when things just aren’t right, and believe me, nobody has any idea how to make them right. Sometimes he just cries in frustration, and there’s not a Baby Einstein video in the world that can snap him out of it.
Trust me, in this house if Baby Einstein can’t fix something, things are in dire shape.
I’m hoping his neuropediatrician is right and the med changes will help alleviate this behavior, and I hope so both for him and for all of us. I hate seeing him so unhappy, and I frankly I also hate the 24/7 surveillance I’ve had to put on him so my car keys don’t end up in the garbage (they’d have company with those sticky notes I rescued.) I shared with you that today there’d be no silver lining, and there isn’t. My boy is the best, but sometimes his behaviors are really tough, and this week I’m just tired of how damn hard things are some times.
And I have a feeling many of you can relate to that too.
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September 22, 2015
There are a few milestones most people remember throughout their lives. First kiss. Prom (if you went.) Wedding date. Birth dates of your children. The time you fit perfectly in your skinny jeans. Who taught you how to ride a bike.
The last one is an accomplishment I wasn’t sure my youngest autistic son would ever achieve.
I have never been happier to be so wrong.
This summer I enrolled Zach, my mildly autistic son, in the iCan Shine bike program through http://www.icanshine.org. iCan Shine is a national non-profit which runs bike camps all across the U.S. and Canada by partnering with local organizations and individual hosts. I was somewhat optimistic that he could learn, but our one attempt at riding a bike without training wheels had been a wash. Although the organization has an 80% success rate I still wasn’t certain Zach could focus enough to accomplish this goal, but I wanted to give it a try anyway.
And I’m so glad I did, because by the third session of camp he was riding his own bike independently and told me “this was the best day of his life.”
And yes, I captured that moment on my iPhone.
In a nutshell, the camp runs five seventy-five minute sessions daily for a full week, and is staffed by volunteers. The first day the riders ride the camp’s bikes, which have wide rollers on the back of the vehicles that make it almost impossible for the campers to fall. By day two riders get a ride on the specially designed tandem bike with a staffer.
The third day many children “launch” by riding camp bikes with a handle at the back so staffers who are running beside them can limit falls. By day four many riders are independent, with day five culminating with riders on the bikes they will be taking home and family members learning how to properly spot their rider so they can continue to practice!
Not all of the campers are independent by day five, but all of them made progress. And I have to tell you, the moment Zach took off on his own for the first time, and stayed up, will remain with me forever.
During the camp I had the opportunity to interview Jane Kleiman, a mom of an autistic son who was the organizer for our session this summer. Jane, along with her fantastic volunteers, worked tirelessly to pull off this camp, and has done so for several years. I’d like to share her thoughts with you, as I think her words will give you greater insight as to the importance of this camp.
Kim: What are some of the most important things about this program that people need to know?
Jane: iCan Shine bike camp promotes social skills and allows the campers to feel just like “one of the kids” who can ride a bike! Riding a bike promotes independence and self-esteem. It encourages physical activity and can also be a mode of transportation for campers when they become adults.
Kim: When did you get involved with iCan Shine?
Jane: I ran my first camp four years ago. I decided to run the program because I realized there was a need for one in central Jersey, as I kept hearing parent after parent saying there were no programs in the area to teach their disabled children how to ride bikes. I also chose to run it because I have a son who falls on the spectrum among other things, and hoped he could master the skill as well. I took a big leap of faith that I could raise the money, get the volunteers, and fill the camp, and fortunately it all worked out.
Kim: How do you view success at the camp?
Jane: All campers are successful as long as they get something out of it. And believe me, they ALL get so much out of iCan Bike! I had a little girl in one camp who was absolutely terrified of bikes, wouldn’t even get on one of them. By the last day she was able to conquer her fears enough to ride a bike with rollers on the back, and she was having a great time. Whether the kids get to two wheels or not, if they can overcome their fears and have fun they are an equal success story to the kids who achieve independent riding by the end of the week.
Kim: How would someone sign up, volunteer, or donate to the iCan Bike program?
Jane: iCan Bike Lincroft is solely funded by donations and iCan Shine is a national non-profit. If you are interested in donating to our camp here in Lincroft please go to http://www.firstgiving.com/fundraiser/LTTWLindroft/iCanBikeLincroft2015. To donate to iCan Shine, Inc. go to http://www.icanshine.org. Volunteers must be sixteen or older and able to come for all sessions the entire week. Riders must be eight years old, and registration is in the spring and fills up quickly. Please go to http://www.icanshine.org if you are interested in participating in the camp, there are many different sessions run throughout the country during the summer.
My heartfelt thanks to Jane, all the volunteers, and to Team Zach: Chris, Natalie, Jaida, Paxton, and Carmen. You were all wonderful and Zach and I appreciate all you did!
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