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

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(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)

 

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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

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(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/

 

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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

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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.

 

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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

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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.

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March 22, 2016

Gratitude

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

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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.

 

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March 14, 2016

Post Twenty-one

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

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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.

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March 7, 2016

Transition

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

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

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

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

Ironically I think he handles big changes better than me.

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

I was not disappointed.

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

And to my delight, he will be.

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

Positive for Justin is key.

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

Hell, it would be difficult for me.

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

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

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

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

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

And I have to remember to be happy too.
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February 29, 2016

Ten Things You Can Do for Friends and Relatives Whose Child Has Been Diagnosed with Autism

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 1:14 pm by autismmommytherapist

Summer 15 054

Recently we celebrated the birthday of my youngest son, who has high-functioning autism. Families and friends from both sides of his genetic tree came to usher in his last year in single digits, while his almost teen-aged older brother with severe autism looked on. For the most part, things went well. There were however Justin’s attempts to pilfer his younger brother’s gifts (which ironically would have ended in him giving them back in disdain.) We had to negotiate with my eldest to get him out of our freezing garage and end his organizing stint (a long story for another day.) I almost forgot the mildly over-cooked chicken nuggets in the oven (my brother-in-law came to the rescue on that one.) All in all however, the event went well, with my littlest love thrilled with his gifts and sad all the hoopla and his four parties were over.

Yes, I said four parties.

I often get reflective after these birthday parties for my sons, am prone to remembering years when things haven’t gone so well. There was the year we tried to keep Justin on the computer when Zach was opening his presents (which bombed miserably, resulting in meltdowns for both.) At another party my husband and I ended up having to carry Justin up to his room for some action I’ve totally forgotten, whisking him past a dozen or more suddenly hushed adults.

Good times.

Things have not always remained constant at our parties, but one thing has remained consistent with both our families and friends since Justin’s diagnosis twelve years ago, something for which I will always be eternally grateful.

No judgment.

There are many other things looking back which I am eternally grateful for, and if you’re reading this and are a family member or a friend of a parent whose child has just received an autism diagnosis, take a minute and peruse. My husband and I were very fortunate with the way the people in our lives reacted- not all of my friends with autistic kids have been so lucky.

1) Don’t judge. You may not understand why your friend/family member is handling her child’s meltdown/insomnia/refusal to eat/obsession with lining everything up in the way she is. Trust me, she knows better than anyone else what to do, and knows her child best. Only offer suggestions if she asks for them.

2) Offer to help, and mean it. She may be so overwhelmed she might not even know where to start asking for help. Give her time. She may need you to go on a doctor’s visit with her, or watch her child while she takes siblings to another appointment. She may just need to get out of her house for a few hours and take a break. Whatever she needs, try to be there for her, and be there multiple times.

3) Initially, don’t send her research. Trust me, she will be logging in a few million hours on the internet. Hold onto whatever you find until things have calmed down a bit and you feel she can be receptive to your help.

4) Never compare her child to your second cousin’s neighbor’s high school sweetheart’s autistic kid. Autism comes in many shapes and sizes. Just because somebody’s kid talked at seven does not mean your friend’s kid will. Comparisons are odious…

5) If your friend’s child has mild autism, don’t tell her he/she will grow out of it. Autism is a life-long neurological disorder- it’s for keeps. There are struggles and differences even for those on the high-functioning end of the spectrum. Respect that.

6) Make them a meal. Even if she’s “gone GF/CF,” take the time to bring them dinner if you live nearby. Random acts of kindness cheered up my family immensely in the months following our sons’ diagnoses. They were often the only bright spots in our day when dealing with meltdowns, sleeplessness, and mounds of paperwork for Early Intervention and school placements. Make the effort.

7) If you know of anyone with an autistic child who might be a positive support for your friend, hook her up. The key word here is “positive.” She needs someone to vent to, who may even have suggestions and referrals to services and people who can make her life easier.

8) If the family needs money and you can help, offer it. Insurance reform has helped immeasurably in covering autism therapies, but there may be a lag time before they kick in. Offer to fill in the gap if you can.

9) Just listen. Don’t share with your friend that your neurotypical child had sleeping/eating/behavioral issues too. Generally in the NT world those issues don’t last for eighty years. You have no idea how long your friend/family member will be dealing with these challenges, and they are different than the ones your NT child is/was facing. Just be there as a sounding board.

10) Get both parents out. Find a way for them to at least enjoy a peaceful dinner or a movie once a month. It will help both them as individuals and their marriage immensely. If they protest at first keep at it- they need it whether they know it or not.

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February 22, 2016

Never Give Up

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 2:20 pm by autismmommytherapist

Summer 15 051

Recently I posted a piece in my various venues talking about what I’d learned about autism in the almost twelve years since Justin’s diagnosis. There were the usual variety of comments, some positive, some definitely less receptive (to put it mildly,) and although I usually don’t respond to criticism with a “rebuttal post,” this one has been ruminating for a while.

So here it comes people.

In the piece I wrote mostly about acceptance, of coming to grips with what severe autism means for my eldest son’s life trajectory. One of the things I wrote was the following: “You will learn that you’ll always worry about what will happen to them after you die. You will learn to live with it.”

I stand by those words. I have learned that I will always hate the fact I can’t be with him, loving him, protecting him, and caring for him until his death. If I could change that and still give him a normal lifespan, I would in a second. The thought of someone potentially hurting my boy is horrifying, an ache in my heart that never goes away.

But I have learned not to let it paralyze me as it often did in his early years, when I tried so desperately to alleviate the severity of his autism so he would live an independent life. All of our therapeutic interventions did not change the fact that he will need constant care for his entire lifespan. I’ve learned to shelve that fear so that it is not always in sharp focus, so I can be present in my life and be the mother I need to be for both my autistic boys.

I’ve accepted his need for lifetime care. I will never embrace it.

There are always challenges in our daily life with Justin. His OCD can be daunting, and sometimes he still has aggressive outbursts. It’s not all lollipops and rainbows chez McCafferty.

But the last few years have been so much better than his earlier ones that I’m often inspired to write about his progress. I’ve been told by readers that I’m naïve, to wait until puberty hits, and wished good luck with the “post-21 abyss.”

And maybe they’re right. I say this without “snark”- perhaps when puberty hits it will all go to hell in a handbasket, and my primarily sweet, smart, happy tween will become unidentifiable from the boy we’ve raised in the last few years. Maybe he will turn twenty-one and there will be no good group home placement for him, no quality “day care,” no money for home respite care. Perhaps I will be yelling at my husband to stop working so he can watch our thirty-two-year-old son so I can get my mammogram. Maybe everything will suck.

Or, maybe not.

Maybe Justin will have options like my friends’ adult children have had in the past few years. One child is thriving in a group home, in better shape and the happiest he’s been his whole life. A grown son of my friend goes to a daycare center he calls “college” and loves it, and lives peacefully at home. Another friend of mine with two adult children with severe autism (yes, she is awesome) has brokered a deal where her two kids get respite care six and seven days a week respectively, are engaged in outings and activities they enjoy, and love their lives.

And just for the record, the last two examples are of autistic adults living large in Jersey.

Perhaps some of you are thinking, “sure Kim, that’s great for them, but your kid’s in the approaching autism bubble and you won’t have those pretty choices in eight years.”

And despite all the autism initiatives I read about daily, that might be my son’s fate. It’s too early to tell.

But even if I am harassing my husband in eight years I will never regret writing about or living these last few years, will never feel I was wrong about encouraging others to have hope. Five years ago we were dealing with daily insomnia, toilet training disasters, refusals to eat, daily aggression, and a host of other incredibly challenging issues that affected not just Justin, but our entire family. I wish I could have known then how much easier life would get.

I wish I would have believed in even the possibility that life would get easier. I would have been a much happier person.

I write for several reasons, and to be perfectly honest with you I write for myself as much as I write for my readers. My computer is a wonderful place for me to vent, said venting keeping me from consuming two pounds of chocolate daily.

Yup, I need my blog for my physical as well as my mental health.

But I also write for others, in an attempt to pay it forward to other parents, particularly those in the early years of diagnosis who may be feeling bereft of hope. You see, twelve years ago I walked into Barnes and Noble after having dropped off my two-year-old son in his pre-school program, purchased a hot chocolate, and settled into the special needs section. At that point I had read several memoirs about autistic kids, all having the outcome of moving to the mild end of the spectrum or losing their diagnoses altogether. I stumbled upon Susan Senator’s “Making Peace with Autism” and devoured it, let my hot chocolate grow cold. It was the first book I’d read where a moderate to severely autistic child had made progress but remained on that end of the spectrum, the first tome I’d perused where the family and child were happy despite the severity and the challenges autism presented to them.

It was the first book that gave me hope that someday my family might be happy too even if my child remained severely affected.

I’m certainly not comparing myself with the amazing Susan Senator, who remains my “autism parent/writer rock star.” However, I know my missives have helped others, and I’m going to keep at it. I never want to walk around hollowed out with the fear and rage I felt in the early years. My goal is to be as happy as I can, to have my boys be as happy as they can be too, and to share their successes with all of you.

I will never give up pursuing safe, productive, and happy lives for them both.

I will never give up.

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February 16, 2016

Cycles

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:29 am by autismmommytherapist

Disney Halloween 2015 114

He grabs my sleeve for what seems the thousandth time today (and it’s only 11:00 AM), says his word approximation for “buckets,” and looks imploringly into my eyes. The single syllable doesn’t sound much like its intended word, but I understand immediately what he wants (as I have the other 999 times,) and I gently say “later” which prompts him to walk away.

Don’t worry. He’ll be back in a minute-and-a-half.

My oldest son Justin has an OCD diagnosis along with his main diagnosis of severe autism, but frankly when he’s in the throes of organizing my husband and I don’t care which disorder is prompting this behavior. As with everything else with autism, the good and the bad, this penchant for moving things, putting them at angles, hiding them (my personal favorite as my almost fifty-year-old brain can’t function without its visual cues) and throwing them down stairs comes and goes in cycles. He’s been doing this on and off for years, but it’s been more severe during this cycle, and frankly our patience is wearing thin.

His latest desire is to reorganize the hundreds of toys we’ve saved since his infancy that are stored in our garage in bins, and he doesn’t seem to care that on most days it’s -42 degrees in there (a slight exaggeration, but that’s how it feels!) In case you’re wondering we do have a padlock on the door to keep him out, but that doesn’t keep him from asking (and asking, and asking) to be let back into organizing mecca. Frankly, if we keep him out he’ll just reorganize something else in the house (he hit my desk once, I thought my head would explode,) so there are no easy solutions.

We are trying a new medication which will take a few weeks to kick in (they always do,) and we’re having the tried and true BCBA from his school out to the house in a few weeks, so we’re on top of this latest challenge.

Two things I’ve learned for sure about autism over the last thirteen years. It’s here forever, and there’s always something.

When challenges rear their ugly heads in our home my husband and I try to find the humor in the situation if we can (Justin’s approximation for buckets sounds like “butt,” a source of endless amusement for my nine-year-old and my husband if I’m honest.) There are times when this is impossible, like when he’s been in an aggressive phase, or has simply been mostly miserable. Watching both of my kids suffer at times from their disabilities has been the hardest part of this journey, has made the logistical, financial, and physical difficulties of this disorder pale in comparison.

But sometimes (yes I just said “but”) a little levity can be found, and as he requests entrance to our frigid toy haven I try to keep this in mind, and remember this too. Some things with autism are permanent, but some, at least with our kids, seem to come and go. We’ve had entire years where our house has not been an experiment in feng shui, and although I don’t ever think this desire will completely disappear, it will most likely go into hibernation if we wait it out.

At least, as I salvage my precious sticky notes, that’s what I tell myself.

The other way I get through these difficult cycles is to lean on my “autism mommy friends,” who get that when I share how difficult this cycle is what I’m really saying is “Oh my God what if this is for the next forty years?” and talk me down from the ledge. They are often the ones who remind me of similar times that have resolved themselves, who give me the hope that this period will too.

In the meantime, while I’m waiting for this “something” to work itself out, there’s always their words of wisdom (and wine and chocolate too.) So I wait, and try to find levity where I can.

And quite honestly, sometimes I like his rearrangements better.


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