May 23, 2016

Spinning

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 11:51 am by autismmommytherapist

Justin BD 2016 Scouts 003

My head is spinning.

I’d like to tell you it’s for a fun reason, like when I used to be able to stay out late in my glory days (I remember them fondly). To tell you the truth my brain is literally pulsing with information, ideas, and choices.

If I’m honest, it’s mostly the choices throwing me for a loop.

I just finished reading Susan Senator’s “Autism Adulthood,” and while I’m contemplating the enormous amount of information within her tome (so much of it positive I’m happy to say), I’m also coming to terms with the fact that next week I’m the mother of a teenager.

Of course, that’s a sobering thought all by itself. Couple that with being the mom of a severely disabled teenager who will need lifetime care, and my chocolate stash is far from being safe.

Justin’s adulthood is creeping up on me, and believe it or not I feel blindsided as just yesterday we were conquering sleep issues and potty training, and it seems incomprehensible to me that he’s almost thirteen. Yes, he’s got eight more years of school before he’s in the real world, and officially “transition” and all it encompasses doesn’t start until he’s twenty-one, but his adult life is coming.

Like winter, it’s coming.

I would love to tell you I have a plan, although to be honest, my motherhood plans have more often than not deferred to “plan B” over the past decade. It’s not as if my husband and I haven’t been faced with big choices since our eldest’s diagnosis. One of our first dilemmas involved breaking into our savings to shell out four figures a month for our son’s ABA program which wasn’t covered at the time in Virginia, a decision we continue to be grateful we made. When we were faced with the fact that our school district’s autism program was good but would never provide him the one-on-one aide we felt he desperately needed for his academics, we made the decision to leave DC and relocate to Jersey which we’ve never regretted either (although we still miss our nation’s capitol to this day.)

We’ve known when to fire therapists, and when to try to keep people in our retinue at all costs. There’ve been med choices and school choices and “do we try this therapy even though it’s not covered” choices (oh my!), but I have to say most of the time Jeff and I knew what to do. Very rarely have we looked back and wished we’d taken the road less traveled.

And yet when it comes to Justin’s living/day-time arrangements post-21, I am literally in a quandary that even dark chocolate doesn’t seem to help.

I will preface what I’m about to say with the fact that eight years out I certainly don’t know what my options will be, and since the adult autism landscape seems to improve at least a bit every year I’m hopeful I will actually have choices in 2024, but we’ll see. Again, even my best-laid plans won’t come to fruition if there aren’t good programs and residential services, and equally importantly, openings.

But even if I one day have a smorgasbord of options (yes, I relate everything to food) at least at this point I’m just not sure what will be best for our son, and what’s best for us.

I’ve had the good fortune over the last few years to watch friends and acquaintances create post-twenty-one lives for their adult children, and I’ve seen all different scenarios come to life. One family I know has kept both their children home and have all-day care almost seven days a week, which enables my friend to work and have a modicum of freedom in her life. I’ve seen another friend place their child in a residential setting where he is finishing his schooling and absolutely thriving after having made a wonderful transition, seeing his parents frequently and seemingly loving his life.

One thing I’ve learned for sure with autism- it’s important to keep your mind open.

I know there will be immeasurable growth with Justin over the next eight years. He is a completely different child than he was at five, spends most of his days joyful, is very close to my husband and me. Honestly, except for his OCD moments and his frequent desire to not stay anywhere outside of our home for more than fifty-three minutes he is delightful. As the years have passed we’ve watched our lives grow easier, our ability to make our own choices grow, and his happiness with his life increase.

Amen to that.

And maybe I should table all this contemplation for a few years, but it’s not in my nature to do so, so here I am. If I’m really honest it’s the decades he’s here without me that are the most painful, and in truth I’ve shelved thinking about them in part because they’re not here yet, and in part because they haven’t invented that damn aging pill yet that lets me get to 110 with all (or most) of my faculties.

Here’s hoping.

So most of the time I choose to focus on the years I’ll still be here, guiding his life, hopefully providing a plan for him where he is as happy as he is now with school and living with us.

And here’s where I get stuck, because I’m not sure if what’s best for Justin is what’s best for us.

Jeff and I are both fiercely independent people. Honestly, one of the hardest parts of parenting for us was not the sleep deprivation (although that sucked too) but the loss of freedom one eight pounds of glory bundle presented us with thirteen years ago. When I think of retirement I imagine travel, and having those stay-in-bed days I lived for back in my youth. I can’t imagine worrying if my babysitter will bail when I want to go see colleges with my younger son, or go to my niece’s wedding.

I can’t imagine one day just not being able to do whatever the hell I want again. I really liked those days.

But as I think of this scenario I look at my boy, and I know people will say I shouldn’t speak for him, but I can’t ask him this, so I just have to guess. I know in my heart he’d want to stay with us forever, would be perfectly happy to go to his school until he was an octogenarian, loves the routine he craves that we’ve provided for him. He will not be a fan of day programs, and since Great Adventure isn’t open every day of the year I see long stretches of “sameness,” of a lack of stimulation and a lack of just something to damn do that I can’t figure out how I’ll provide for him.

Just in case you think we don’t think out of the box we’ve contemplated Hawaii which supposedly has fabulous adult services. Justin could spend his forty-three minutes at the beach and ride his horses daily, and Jeff and I could live in paradise.

I figure we’d be very popular with friends and family.

The truth is I just don’t know what’s best for all of us. I struggle, because I know that by potentially putting him in different settings the people who care for him won’t always know what he needs the way his mom and dad do, but I also know he will have to deal with that eventuality someday.

So when is it best to start?

Will I know what to do?

Will my expectations and hopes match my options?

Will Justin approve?

Wherever he is, will he be loved at least a little?

And as I pop that last allotted chocolate into my mouth, my head is still spinning.

 

Follow me on Facebook at Autism Mommy-Therapist

May 16, 2016

Growing Up

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:28 am by autismmommytherapist

Justin BD 2016 Scouts 044

This weekend a momentous event occurred, not one with trumpets and flashing lights, but momentous all the same.

The truth is, if I hadn’t been paying attention, I would have missed it.

My beautiful boy turned thirteen last week, and as usual we had a zillion parties for him (okay, three), including his family party on Saturday. I will share with you that although we’ve tried, in the past the boys’ birthday parties have not always been the joyous events I conjured up in my mind years prior to giving birth (then again, most of our moments with them do not exactly match what I conjured up before their births).

There was the party where despite giving Justin a “big brother gift” he still wanted to open all of Zach’s presents (and trust me, not one of them was enticing to him).

There was the party where my boy had an epic meltdown for a reason we still can’t discern today, and we had to carry him protesting to his room (that quieted the house). Amidst our struggles there was always joy (I love birthdays so much there always has to be at least one moment), but often Jeff and I were left exhausted at the end of a celebration, faced with at least one unhappy child and a mountain of dirty plates that looked as if it would never go away (hell, who’s a fan of dirty dishes anyway?) More often than not we were mostly relieved our little birthday parties were over, knowing we’d have a breather until next year.

This past weekend was different. For the first time there was not one single crisis, no pouting, no tears. Both Jeff and I actually talked to our relatives, ate too many appetizers, and had an amazing time.

But the big moment, the one I actually noticed while simultaneously talking to people/eating too much/remembering to get my camera was when I told Justin it was time to open presents, and he came into a room laden with gifts. This year, he just walked over to a chair, sat down, and waited to be presented with his stash.

He was so grown up he literally took my breath away.

I’m trying so hard to recognize these moments, to tuck them away for if/when times get difficult again, to bring them out and revel in them even when things are good. If two years ago someone had told me my son would be patient (and happy!) while opening his birthday presents I would have laughed. If someone had told me eight years ago my son would be potty trained I would have laughed even harder (and ate some more chocolate.) Going back even farther, if someone had told me I’d once again sleep through the night (or what passes for sleeping through the night for an almost fifty-year-old woman) I would have yawned, then thrown my arms around said person in a primal hug.

There’s no snark where sleep is concerned.

The truth is, I keep hearing about the “post-21 cliff” and the “terrible teens,” but honestly, things just keep getting easier in our home. My eldest son has truly grown into his own skin, surmounted many of his sensory and communication issues, learned to soak in and enjoy the world around him. He is a predominantly joyous, peaceful child.

This is not to say we don’t have our moments. The OCD is still a struggle, and when we don’t understand him confusion and frustration reign for all.

But I will honestly tell you those moments are now few and far between, and we’ve created an ever-strengthening co-existence in which my boy is happy, and I feel sane, and whole.

It’s getting better, and it’s not just chez McCafferty. I’ve seen this peacefulness occur in many of my friends’ households, friends whose children presented staggering challenges mere years ago.

Things are getting better. And I’m so grateful I feel we’re really enjoying our lives, not going through the motions of just getting through the day.

And for me, that’s better than trumpets and flashing lights any day.

 

Follow me on Facebook at Autism Mommy-Therapist

May 9, 2016

Birthday Boy

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 10:31 am by autismmommytherapist

Justin's First Digital Pics 056

This week my boy turns thirteen.  He will be ushered into his teenaged years, that period which is supposed to be so difficult, so devoid of communication, so trying to one’s soul.  Here’s a secret though, shared between you and me.

I actually think we had his teenaged years when he was a toddler.  At least that’s what I’m hoping, because Mommy is a lot more tired now than she was a dozen years ago.

Justin became a “tween” two years ago, and I admit part of me was waiting for that other shoe to fall, for his aggression to return. I waited for his strong will to assert itself even more than before, for us to struggle to communicate with one another.  What I found however was except for when his OCD takes over, for the most part things have gotten so much easier.  The boy “who’d never sleep” runs to his bed each night.  We now last through entire movies at a theater, and even make it over an hour at the beach (I admit, it’s work, but we make it). When we travel to relatives’ houses he’ll do the “work” we bring along for him, and we’re usually good for three or so hours at a party.  He will amuse himself for long periods of time at home, either on his DVD player, the computer, or watching his favorite Baby Einstein videos on tv.

The truth is we’re not on 24/7 surveillance anymore.  And it is completely, utterly liberating.

So much has changed with him from the days where insomnia reigned, eating was for sissies, and my arms and legs bore those bluish/greenish/purplish patches on a frequent basis.  My boy has matured, has come into his own.

Echoes of his former self still exist.  He still can’t go for more than an hour without a hug or kiss.  He still loves some of the games of his “youth,” yet adores it when my husband sneaks up on him and tickles his tummy. He still revels in my singing his baby song to him each night.

Remnants of his past remain, as when he gets frustrated with his stupid parents who can’t figure out what he wants.  But with his burgeoning communication skills on his iPad these instances are much fewer and far between, and most of the time, that sweet boy I held curled like a comma in my arms still resides.

I love that sweet boy.

This week and next we will celebrate you (Mommy extends birthdays as long as humanly possible), and there is so much to be proud of, so much for us to rejoice in on your special day(s).

We celebrate how hard you work at school, how your perserverance has inspired so many around you.

We celebrate your ever-increasing vocabulary, because it eases your frustration and is always a thrill to hear.

We celebrate your tenacity when acquiring a new skill, how you won’t give up until you’ve mastered it.

We celebrate your abundant affection, which you bestow upon everyone in your posse.

We celebrate your intelligence, and the doors it’s opened to enrich your world.

Most of all we celebrate your unbridled joy in most of your moments, something I never thought I’d witness years ago.

Happiest of birthdays to my boy, we love you so much!

For more on my family visit my blog at autismmommytherapist.wordpress.com

Follow me on Facebook at Autism Mommy-Therapist


 

May 2, 2016

Mother’s Day

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 10:57 am by autismmommytherapist

Sep11163

I can’t believe I’m saying this, but this Mother’s Day I will be mere hours away from being a mom to a teenager. How this happened when I’m not a day over twenty-five is unfathomable.

Mother’s Day is always a high holy day chez McCafferty, landing as it does in the midst of the trinity of Mother’s Day, my eldest son’s birthday, and my wedding anniversary.

Yes, Hallmark loves us this month.

But although I love celebrating my anniversary (happy that my spouse and I still like one another), and adore celebrating my severely autistic son’s birthday (birthdays last a month around here), I admit I have a definite soft spot toward Mother’s Day.

After all, there’s the day before I became a mom, and beyond the great divide, every day after.

I admit, having an autistic son (and later having another one, but that’s for another day) was not even on my radar when I was pregnant with Justin.  I was much more worried about the ridiculous number of pounds I’d gained (yup, almost forty on my five-foot-two frame, which at one point put me not that far from my husband’s weight) than any developmental disorders he or subsequent children might have.  After all, I’d avoided sushi and alcohol for nine months, and since he was a much-wanted IVF baby treated my body like a temple so that his pre-world habitat would treat him well.  I was much more curious about his gender, since we carefully averted our eyes at every ultrasound.

I had no idea what was coming.  And as I look back I’m grateful, because it took months for us to suspect he might be developing differently than other babies, and almost another year from that point before he was diagnosed.  I got to ease into realizing how different our lives would be from what I planned (and being A-type, I will share with you that it was quite a plan).

At seventeen months I traded worrying about what pre-school (or hell, college) he’d get into and immersed myself in the world of ABA, gluten-free diets, the insurance quagmire, and occupational, physical and speech therapies.  I threw out “What to Expect the Toddler Years” because it held no relevance to my beautiful boy, and seemed to imply we were both failing at this mother-son dance.

We were not.  He was not.  And what I’m also grateful for is my ability to embrace a new version of his impending life fairly quickly, where each milestone no matter how small was reveled in, and where I made sure I never missed a smile or an instance where we strengthened our unbreakable connection.

To be perfectly honest there are times where having two autistic kids has been exhausting, frightening, and depressing.  I have at times felt completely overwhelmed, inadequate to parent two special needs boys, and tired.

Perhaps I should elaborate.  I mean very, very tired.

But over time the exhaustion and the fear have been mostly replaced with immeasurable pride in my boys, and downright awe at how my severely autistic son navigates his world, inspiring his family, teachers and everyone lucky enough to know him with his tenacity of spirit and his deeply compassionate heart. Autism has forced me to look at boy’s progress differently, to revel in their accomplishments even when I feel it’s all a little too much.

And when I’m overwhelmed, I recall these gifts.

I ponder the way my eldest son embraced his teacher during their post-Hurricane Sandy reunion, refusing to disengage from her embrace for the better part of an hour.

I conjure up the image of his brilliant smile when his neighborhood “girlfriend” comes to call, his delight at her presence.

I think of the photos from the slideshow we saw at his school’s gala, the ones where he is so intensely focused on his teacher, so eager to learn.

I remember his pride at learning to “steer” his horse, how he sat straighter in the saddle each time he went past me, his proud gaze locking eyes with mine.

I feel gratitude for the boy who tolerates his brother’s exuberant nature, who accepts the hugs and tugs that comprise his relationship with his younger sibling.

I envelop myself in the glory that is his “nighttime self,” the satisfied grin and kiss he bestows on me every night prior to slumber, letting me know he did indeed have a good day.

I remind myself how hard he has struggled to speak or communicate via iPad, and how these skills continue to emerge.

I recall the first time I held him, this hard-won, longed-for babe, and the way his fingers grabbed mine so tightly I thought he’d never let go.

And I will continue to hold on while simultaneously pushing him to be his most independent self, pursuing my goal for my boy that he will always remain happy, productive, safe.

My love to my youngest son, and to my eldest who made me a mom, my most important role yet.

Happy Mother’s Day to all!

 

Follow me on Facebook at Autism Mommy-Therapist


 

April 25, 2016

Someone Special Needs You walk-a-thon

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 1:55 pm by autismmommytherapist

Easter Scouts Sci 16 004

(Editor’s note:  The following blog is reprinted in anticipation of this year’s Someone Special Needs You walk-thon taking place on Saturday, June 4th. Details below!)

Zach distracts me for a moment, clamoring for me to appreciate his Easter masterpiece. As I turn to give his creation its proper due I see a basket of eggs teeter precariously from its perch near Justin’s elbow, and I lunge to save them.

The fact that they’re not real seems to have escaped my primal instincts for the moment, and I have to laugh at myself.

I secure the errant basket in the middle of the table this time, and my eldest gives me a look as if to say “What’s your problem, Mom?,” a query to which I could give a variety of responses. Instead, I make a concerted effort to lower my heartrate while making sure to keep Justin’s curious hands away from the glue gun that’s apparently become very enticing to him.

It’s just another Friday night at Someone Special Needs You.

SSNY was founded by Vince Scanelli, a parent of an adult child with autism who wanted to provide his son with both a social outlet, and an activity-based evening that didn’t center solely on his family. One Friday night a month (except for January and the summer months) children and adults with a variety of disabilities gather behind the Colts Neck Reformed Church to partake in crafts and events, while simultaneously being assisted by neurotypical teenagers from the Colts Neck school district.

It’s a lovely program, an opportunity for individuals with special needs both to get out and to have a “friend” for an evening, and an equally important opportunity for a number of teen-agers to have a glimpse into the world of difference and disability.

A win-win for all.

I began bringing Justin, then later Zach, to SSNY years ago, when Justin was only three, and Zach had not yet graced us with his presence. I still remember seeing the flyer in the depths of his backpack and being elated to discover what I felt would be a fun opportunity for my boy, one for whom many traditional childhood activities are decidedly not fun.

I knew he liked crafts, and loved activities like trick-or-treating, bouncy houses, and Easter egg hunts, so I figured this would be a great event for him. With a few rare exceptions (most notably the time my aunt and I had to carry him out to the car after a tantrum of such magnificent proportions I knew he’d set an all-time record,) he’s enjoyed every minute there these last years, as has his mom.

One of the best parts is, it’s also free.

SSNY is always looking for new families to participate, and I’m writing today in part to encourage any of you with special needs children to give it a try, and in part because the organization is holding its annual walk on June 4th in Spring Lake.

We will be walking around the picturesque lake in Spring Lake. The walk starts at 9:00 AM and ends at noon. Parking is available in the train station at Warren and Railroad Avenues, and the walk start point is at 5th Avenue and Warren (look for the SSNY tent.)

In addition to offering a once a month alternative to a typical Friday night at home, Vince is also attempting to create a group home in central Jersey at Overbrook Farms in Colts Neck. The home is the inspiration for the walk.Vince will require a significant amount of funding to bring the establishment to life.

If he’s successful the group home will consist of ten beds for as many adults with disabilities, as well as the chance for said adults to participate in a working farm.

In many instances adults with disabilities have been marginalized in the workplace, and this farm would grant the opportunity for ten people to contribute to, and ultimately hopefully work with, members of the Colts Neck community. For many parents of children with special needs (this one included), a place to reside and a meaningful workplace would be dreams come true.

I know we are all besieged by requests to donate these days (I swear, I’m hit up at least a half dozen times a week between autism and the Girl Scouts), and I know money’s tight for us all. So, if you’d just prefer to come out and cheer on SSNY on June 4th, or give the evening activity a try, we’d love to see you.

I’ll leave you the website below, and if you care to join us in any fashion, we’d love your support. Thank you!

 http://www.ssny.org/  (forms for the walk are available here)

 

Follow me on Facebook at Autism Mommy-Therapist

April 18, 2016

POAC Lakewood BlueClaws walk-a-thon

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 1:45 pm by autismmommytherapist

April, Play, Walk 2012 067

(Editor’s Note:  POAC is a local organization which does so much for autistic people throughout New Jersey, from trainings of educators and police officers to fun activities for families which are always free.  Below is a piece I wrote about POAC last year.  I’m posting it today because one of their many annual walks is this Saturday, April 23rd, at First Energy Park/Blue Claws Stadium in Lakewood.  Registration is at 11:00, the walk begins at noon. For more information please go to www.poac.net.  We would love to see you there, it’s not too late to sign up!)

 

I love POAC (Parents of Autistic Children, Brick NJ.)

 

I’ll have you know that for me to say I love something is a big deal, as I usually reserve such a glowing pronouncement for my family, wine, chocolate or Game of Thrones (yes, I’m a fantasy geek.) So I don’t pen these words lightly, and I’d like to tell you why.

 

For the past twelve years I’ve been wrestling with, learning from, and as much as possible embracing autism due to my boys’ diagnoses, and I’ve turned to many different individuals and organizations for help. I’ve been fortunate to receive excellent medical care through Autism Speaks, names of autism providers through Autism New Jersey, and other helpful hints and tips through a number of other organizations. I am grateful for all they’ve collectively done for my family.

 

But my heart remains with POAC.

 

In part it’s because I have a soft spot for the underdog, as this wonderful organization is funded solely by private donations. In part it’s because it’s local, and I’ve had the pleasure of getting to know its head honchos, who have been personally helpful to me in the past. If I’m honest though, there’s one main reason I remain faithful (and it’s not just the fabulous food they often have at events.)

It’s that they provide wonderful recreational outings for our families all year long, safe havens where anything goes and autistic children and their families can just be themselves.

 

Over the past nine years since we relocated to New Jersey I have attended numerous and excellent free workshops about autism that POAC has offered to the public. POAC has also provided my children with opportunities to surf, ride horses, go to Twisters, attend FunTime America, participate in elaborate carnivals at Georgian Court, and a myriad of other fun (and always free!) activities. There have been prolonged periods where it was almost impossible to get my severely autistic child, Justin, out of the house, and yet for the majority of the last few years we were able to attend these events, and at almost every one of them he had fun.

 

And truly, at the end of the day it should be about what he thinks is fun, not what I think should be fun for him.

 

POAC is having their annual Lakewood BlueClaws walk-a-thon on Saturday, April 23rd at 11:00 at First Energy Park in Lakewood, and I’m writing today to ask you to attend, or contribute, or both. The event is filled with autism-related vendors, a playground, food, and activities, and culminates in a powerful walk around the stadium, which moves me every single year.

 

We’re a community often divided. It is amazing to see such solidarity and support come together.

 

I’m including the link to POAC’s website below. I’ll be there on the 23rd with Zachary, who will be there not only walking for himself, but to support his older brother. I’ll be the short blond desperately trying to keep up with the super-fast nine-year-old (and failing miserably.)

 

Hope to see you there, and thank-you for reading!

 

http://www.poac.net/

 

Follow me on Facebook at Autism Mommy-Therapist

 

 

April 11, 2016

An Interview with Parents of Adult Autistic Children

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:38 am by autismmommytherapist

Easter Scouts Sci 16 077

 

 

Editor’s note:  In honor of Autism Awareness month I interviewed several parents of adult autistic children who are no longer in a traditional school setting.  Although there is still much work to be done to support adult autistics in residential settings and in the workforce, there are families who have figured out how to create a safe and stimulating environment for their children.  I am posting two of these interviews below.  If you are seeking more information about how to transition your autistic child to adulthood I strongly recommend “Autism Adulthood:   Strategies and Insights for a Fulfilling Life” by Susan Senator.

Interview #1:

1) How difficult was it for your child/children to transition from school to adult life? What was the process for you? Did your child’s/children’s school help you with the process?

Danny is currently still in school, but in a residential placement in KY. He was having issues and not meeting his potential and it was getting more difficult to keep him organized and productive without him getting agitated and/or aggressive.

 

2) How did you decide upon your child’s/children’s current placement, and please describe it. How did you find out about your different options?

We tried to look at what Danny’s lifelong needs were going to be and find a place that has will address his needs and allow him to be the best he can be. We wanted him to have as much independence as possible while still being in a structured environment and having a productive day.

 

3) What have been the most difficult parts of your child/children’s placement?

The most difficult part of his placement has been the distance. He is minimally verbal, so phone calls are not really an option for communication. We skype Monday through Friday while he is in his communication class, which has been wonderful, and I can see if he is not feeling well or is out of sorts.

The worrying about how he is doing when I am not in communication is the most difficult part. It can consume you. Letting him do things without us has been very difficult.

 

4) What have been the easiest parts, and what (if anything) surprised you?

In some ways, because of his disability, the easiest part has been that he is ok not being with us all the time. I was surprised (and somewhat hurt at first) by the fact that he was just as happy to let us go when the transition times come.

The friendships that he has made (and this is a young man who did not show any interest in doing things with others) are amazing. He is showing interest in just hanging with others and being part of a group playing basketball or going on the treadmill in the gym.

 

5) Do you have any tips for parents just beginning the process? What (if anything) would you have done differently?

Start looking at options as early as you can and think about trying some interim steps. For instance, allow your child to attend camp where they are away from you for overnight or longer.

I put many limitations on Danny out of fear and wanting to protect him, but he was capable of so much more.

You will have to continue to advocate for your adult child, but try to view them as independently as you possibly can.

 

Interview #2:

1) How difficult was it for your child/children to transition from school to adult life? What was the process for you? Did your child’s/children’s school help you with the process?

Personally our transition was a little challenging but once he got into a routine and was successful he did well. On or about the age of 17 you need to start thinking about what your child’s strengths are. Don’t rely on the school alone –as a parent you need to help identify areas where your child might be able to work and do well. Sometimes their strengths are different than what you think they are. The school should help in job sampling and guiding them.

 

2) How did you decide upon your child’s/children’s current placement, and please describe it. How did you find out about your different options?

Placement was decided for us – our selected placement was the only group willing to take Angelo at the time. A group home was the only option for us.

 

3) What have been the most difficult parts of your child/children’s placement?

Not having total control over decision-making and having to rely on others.

 

4) What have been the easiest parts, and what (if anything) surprised you?

Nothing was easy, but we were surprised at how happy he is and how much he has matured into a young man who enjoys his life and all that he does in it. His self-esteem has grown a great deal.

 

5) Do you have any tips for parents just beginning the process? What (if anything) would you have done differently?

Ask the school and other groups for help like the DCF (Department of Children and Families) and the DDD (the Division of Developmental Disabilities) for assistance. Always remember that you are the parent and all of these programs are only to assist you.  Surround yourself with positive people who want to help you. As to doing things differently?  My wife and I have always done thing the best we can, so there’s no regrets on our parts.

 

Follow me on Facebook at Autism Mommy-Therapist


 

 

April 2, 2016

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 7:21 am by autismmommytherapist

Easter Scouts Sci 16 074

Today is the ninth official World Autism Awareness Day, and as I watch my eldest son with severe autism rearrange his bucket of toys for the zillionth time I can assure you, I am very aware of autism.

The great thing is though, the rest of the world is now too.

In past years I’ve written about my youngest son’s burgeoning awareness to his own form of autism, and about moving from awareness to acceptance, and yes even to celebration of certain aspects of my boys’ disorders.  I’ve also written about amazing advocates in our area, and talked about my own advocacy, and what it means to me to “light it up blue.”  I’ve talked about how far the boys have come in the twelve years since my eldest was diagnosed with severe autism, discussed their progress as well as the fact that despite two autism diagnoses in our household, we do indeed have a happy family.

But I’ve never spoken about one entity that helped us get to that peaceful place.  And that entity would be Autism Speaks.

Many years ago we were desperately searching for a practitioner who could help us with our eldest son’s aggression, and failing miserably in this endeavor.  One day my mom came across an article about Autism Speaks’ ATN, or Autism Treatment Network, a program affiliated with CHOP (Children’s Hospital of Philadelphia) not far from where we live.  Within minutes of meeting Dr. Amanda Bennett we knew we were home, and we’ve been using her services (and those of Lindsey Widmer) ever since.  It was the first place we’d been to since our visit to Kennedy Krieger years ago where we felt our concerns were listened to, were validated, and where we actually walked out with a plan of what to do next for our boy.

Needless to say, our gratitude toward Autism Speaks began that day.

We were again beholden to the ATN a few years later when our youngest son decided sleep was for sissies, and we were able to engage the services of an ATN nurse, Margaret Souder, who made house calls (!) and helped us to get our boy’s sleep schedule back on track.  We’ve followed her instructions for years, and now our boy gets ten hours of shut-eye about 85% of the time (yes, I’ve tracked it, I’m that A-type,) which has benefitted both him and the rest of his family greatly.

His momma needs her shut-eye too.

Autism Speaks has helped us financially too.  Their initiative to mandate that insurance companies must cover autism therapies like ABA helped us when we relocated to New Jersey from Virginia.  During Justin’s early years we had spent thousands of dollars on his in-home program because Virginia only offered us six hours of occupational therapy and two hours of speech a month, all with more than a year to go before Justin would be eligible for a school program. We were on the hook for all of his ABA services, most of which I delivered myself so we wouldn’t go bankrupt.  Since we moved up north all of his therapies have been either fully or partially covered, a fact for which we are grateful too.

Autism is expensive.  Having coverage for necessary therapies is invaluable.

And last, but definitely not least, Autism Speaks is a large part of a movement that has made autism a household word, which has opened worlds of awareness and acceptance, has made navigating the often difficult waters of autism easier for this family.  I saw the tide start to change ten years ago when I began talking about our son’s diagnosis, saw without fail the compassion and understanding in people’s eyes when I sometimes had to explain our boy’s behavior in public.  I am certain some of that comprehension came from Autism Speak’s global approach.

So today, as I make sure my blue porchlight is still working, I just want to take a moment to say thanks to Autism Speaks for all they’ve done for my boys.  We have our struggles here still, and I anticipate we always will.  But in general my two sons are safe, happy, and productive, three things I made a priority for them before they were even born.  I am grateful to Autism Speaks for helping this family get to a place of peace.

And my wish for you is that you get there too.

Follow me on Facebook at Autism Mommy-Therapist

 

 

March 22, 2016

Gratitude

Posted in Life's Little Moments, My Take on Autism tagged , , , at 12:29 pm by autismmommytherapist

041

Oh, how I love Justin’s school.

Recently I schlepped up north for my boy’s parent-teacher conference, excited as I always am, but this time with a lump in my throat too.

You see, my son, who I swear just yesterday was a toddler, is now less-than-a-warranty away from being a teen-ager, and he’s moving on to an upper elementary classroom.

This means that he will be leaving his beloved teacher and aides, and the actual classroom he’s been in for six consecutive years.

As excited as I am for the switch, just thinking about it makes me verklempt.

I settled in with his teacher at her conference table, thrilled to hear he’s doing well.  I was regaled with his progress in math (he did not get that from me,) reading and spelling.

I listened to how much he’s matured on their outings to Toys ‘R’ Us and Target, how he revels in each adventure.  I listened to his teacher tell me my son has a crush on a para in another class (so age appropriate!) whom he tries to hug at any opportunity.

I smiled, and chuckled, and didn’t cry once.

I thought I’d make it through, but then she hit me with this.  She and the staff are so happy for him to move on, but they all hope his replacement is as smart and loving as he is.

And while I’m thrilled to hear they will miss him, I’m even more thrilled to know once more that they “get him.”

I’m proud that Justin can learn, is mostly well-behaved, showers staff with frequent hugs. I’m also thrilled because this means he’s predominantly happy, an emotion I did not think we’d achieve back in the dark days when insomnia, aggression, and a refusal to eat dominated our world.  I love that he loves school, that he’s productive, safe, happy.

It is a priceless gift when you’ve found the right school placement for your child.  I know it doesn’t often come easy, that mediation and court cases sometimes ensue when parents are desperately searching for what their child needs.

But whenever you can, if you’re able, fight for what fits your child’s specific needs.  Do what you can to make certain your child’s sensory, academic, and communications needs are being met.  As much as you can, fight.

Things aren’t perfect with Justin.  His OCD can be daunting, and there are still, albeit infrequent, aggressions on his part.

But he is mostly a happy child, and while I’d like to attribute some of that to his innate nature I must give so much credit to his wonderful schools, the teacher and paras who have been so dedicated in making certain Justin achieves his best self.

We couldn’t have made it here without them.

And as I walk back to my car not bothering to keep the tears in check I am awash in gratitude.  Gratitude for such devoted staff. Gratitude for what that means for our family.

Gratitude for my boy, just the way he is.

 

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

Next page

Follow

Get every new post delivered to your Inbox.

Join 263 other followers