NEWS FROM THE NEST

PAGE
1
My Greatest Sacrice
LEARNING A NEW NORMAL
By Erin OLoughlin
ur son, Marcus, was diagnosed with severe autism at
the age of 3. And yes, I was one of those parents in the
early days: I would read any book I could get my hands
on, trying to find the magic potion that would be the right
concoction for my baby. Back in those early days, I didnt care if
I had to dabble in witchcraft, Id try anything. Thankfully my
husband Colm, being a physician, was more realistic and kept me
grounded. In the beginning, he made a deal with me: Hed be
willing to go along with any crazy remedy that I read about, as
long as it was safe and we could afford it. So the race towards
recovery - or, at the very least, improvement - began. One-on-one Applied Behavior Analysis therapy at
a preschool that cost us $40,000 a year, Verbal Behavior Therapy at $500 a week, Occupational Therapy,
Speech Therapy (none of which was covered by insurance), Gluten-Casein free diets, yeast elimination
pills imported from Canada, psychiatric medication cocktails, the infinite list goes on, and I actually
cringe at some of the things we tried, just thinking back on those days.
But things have gotten harder and harder over the years, not easier. Marcus has not recovered- nope, not even close. You see, thats the
infuriating hallmark of autism... you can take two autistic children at the same level of functioning in their younger years, with similar traits,
similar skills, then give them the same exact therapies and treatments, the same amount of attention, time and love, and 10 years later, you
will have two completely different functioning individuals. In the end, it really all boils down to roadblocks in the brain, developmental
capability, and degree of disability that sometimes cannot be realized until the child is older. And as Cammie McGovern states in Autisms
Parent Trap, In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children
feeling like failures.
People say all kinds of things to me and my husband, as parents of an autistic son... and yes, of course, they mean well. I dont know how
you do it, I couldnt do what youre doing. But you know what? YES YOU COULD. AND YOU WOULD. You would be doing the same
thing if it were your child; the only difference is, we have to do it. The other fun one: Youre never given more than you can handle.
Well... YES WE ARE. On a daily basis, our family (Marcuss 7-year-old brother and 12-year-old sister included) has dealt with physical
abuse from Marcus, screaming hour-long meltdowns that turn aggressive, banging doors off of their hinges, opening car doors while were
driving on the freeway, smashing his head through windows, digging in and emptying the trash, chewing up and destroying jewelry and
small toys, pinching so hard that we have to wear long sleeves in the summer, due to black & blue bruises up and down our arms. Once I
counted up the hours I had spent in IEP and Behavioral Intervention Meetings at his school during a 6 week period alone - 9 hours. At the
age of almost 10, Marcus is already 130 pounds and almost 5 feet tall - 12 pounds more and a mere 5 inches shorter than me. As David
Royko states in his This American Life podcast, Almost daily, we have experienced things that other parents would recount for the rest of
their lives as their biggest parenting horror story. (By the way, for fear of sounding too negative towards those who mean well, one of the
best things someone ever said and did for me, as I was sitting on the curb outside of the grocery store waiting for Marcus to calm down one
day: A man walked by and casually put his hand on my shoulder and said, Hang in there, Mom and then kept walking - he knew he
couldnt do anything to help, but he was giving me his support without judgment. It was as if he had given me a warm hug).
About 3 months ago, I had an out-of-body experience, so to speak. I was home alone with the three kids, and Marcus had been in the throes
of one of his more severe meltdowns. The tantrum was getting progressively worse, so I had to remove him from all of us and get him up to
his room for isolation, for his own safety and for ours. Getting him up the stairs was a feat in itself, then once I got him in his room, he
started screaming and banging and kicking on his door, to the point where I thought the door would come off of its hinges. Instead, I came
off of my own hinges. I broke down. I just sat down on the floor outside of his room and started crying hard. My sweet 7 year old Brendan
came over to me, wrapped himself around me and said, Shhhh, its ok Mommy, well get through this together. It was then that I traveled
outside my body, took a good long look at what was going on, and thought to myself: THIS IS NOT RIGHT. We cannot do this anymore.
My own child should not be witnessing this, nor should he be comforting me about something like this. I should be comforting him over
skinned knees and melted popsicles. Instead, I had allowed the roles to reverse and my 7 and 12 year old children had grown up way too
soon and had witnessed and experienced way too much. But who could save us?
Continued on next page
Me & My Boy,
Photo by Carolyn Van Houten
O
NEWS FROM THE NEST
PAGE
2
My Greatest Sacrice, Continued
That night I sat down with Colm and broached the subject: We cant do this anymore. His response was a bit defensive. Well, what do you
mean? What do you propose that we do? Were his parents. For the first time, I uttered the words, What are your thoughts about residential
care? Immediately he struck me with the words, Hes too young, no way. I felt like an asshole. I then told him about the experience I had
that day with Brendan and tears sprung to his eyes. I was reaching him. We tabled the discussion for awhile until he mentioned the idea to our
oldest daughter about Marcus possibly going away to camp for awhile so that other people could give him what hes needing to help him
be happy. We were just testing the waters, you see. Jordans response was, You mean, wed be giving up on him? Now Colm and I both felt
like assholes. And so we tabled the discussion for awhile again, occasionally bringing it up to each other every time Marcus had a rough
moment.
And then... four weeks ago, Marcus head-butted his teacher and gave her a mild concussion.
It was an awful awful awful moment in time when I heard that news. I called Colm at work, we made a quick mutual agreement, we hung up,
and I then immediately picked up the phone again and started making tearful calls. Its all a blur, and honestly Im not sure how the people I
spoke with that day even understood what I was saying, I was so incomprehensible. But I can say that every single person I talked with, every
one of them being state employees, was phenomenal, helpful, warm and caring. And I will forever be thankful to the people that have the
heart for this type of work. Through a collective effort, we got the ball rolling and sent in an application for Marcus to attend an acute
temporary residential respite program for developmentally disabled children in crisis, about 45 minutes away from us.
That night I went over to my closest friends house, drank too much, and wound up sitting on her stairs drunk, weeping and wailing while she
and her husband just held and rocked me. Right there in the stairwell. Thankfully they are close family friends and none of us even
needed to say a word. For what was there to say? That Colm and I had done the best we could; we had done everything
humanly possible, and still our son was not happy and we could not provide him what he needed anymore. The loving warmth
of a mothers touch and the tireless commitment of our time, our money, our familys life and often times the well-being of
our other two children were simply not enough to overcome what we were dealing with. Simply put: Marcus needed more
and what we were trying to give him wasnt good enough for him anymore. And even though it goes against all parental
instincts around the world and throughout all cultures, in this case, home was not the best place anymore for Marcus. And it
wasnt so much that we had come to this decision - this decision had been a long time coming and Colm and I had been
discussing it for months by that point. It needed to happen. It wasnt even really that we were finally going through the motions to make it a
reality. It was that my son had hurt someone and that people around him were afraid of him. That strangers, even friends, were shocked and
afraid when I took him out into public. It was all just so... sad. We had given him nothing but love and understanding for 10 years, taken care
of his every need with unconditional love, changed his diapers for 10 years, and still - it had come to this: Giving his teacher a concussion,
causing his teachers to be afraid to be around him and labeling him a danger to others. I knew he couldn't help it, that he didnt mean to hurt
people and that he did it out of frustration because he couldnt tell us what he needed. It must be awful to be trapped in a mind that can't let
you communicate. I cried that night in my friends stairwell like I had never cried before, grieving over a loss that cant even be put into
words. Thankfully I calmed down and they gave me a ride home. Because thats what good friends are for.
A few weeks ago, I entered the anger stage of my grief and became a raging lunatic. I was angry at my son, at the school, at life, at the cards I
had been dealt. Angry at the sanctimonious comments I found on the autism board about how parents give up on their children too soon and
put them away in warehouses, just so they could get them out of their hair. Yep - thats us I guess, we were putting our kid in a warehouse
because we were giving up on him. I was angry at those innocent parents of higher-functioning autistic preschoolers who would post
comments about how such-and-such therapy was doing wonders for their child, how they could really notice an improvement - how early
intervention must really be the ticket. I was angry at the autism self-advocates, constantly preaching at me that autism is merely
a different ability, not a disability and that they are perfectly happy living with their autism, in fact they wouldnt take it
away if they could. I wanted them to live with my child for a couple weeks and see if they felt the same way. I was angry that
this entire movement of autism awareness seems to only focus on the higher-functioning individuals, completely forgetting
about this shadow population in which my family and many others reside. I was angry at autism. I could have handled
autism, but why did my kid have to have THIS kind of autism? Why couldn't he just be happy with quirks and resolvable
problems and the occasional outburst? Why couldnt he just be HAPPY? I was angry that my other two children were
getting the short ends of the stick. Why couldnt they experience a relationship with their brother, at least some kind of
relationship? Why couldnt they see a happy and well-adjusted mother? It was all just so... out of my control. And I was angry
that it had to end up this way.
Marcus wound up getting accepted into the program a week after we applied. And can I just say... there is nothing more nauseating than
packing for your child to send him off to a mental institution the following day. David Roykos experience of admitting their 13 year old son
into residential care was almost exactly like ours: After our meeting with staff and unloading [Marcuss] stuff, it was time for us to go. It
was quick; a long goodbye would only make things harder... Very briskly, we walked down the hall and out the door, accompanied by the
sound of [Marcuss] wailing. It was a strange feeling to leave an unhappy [Marcus] with strangers. The familiar urge to swoop in and try to
calm [Marcus] down and to protect others from any behavioral shrapnel was hard to resist. We felt terrible, but at the same time, we felt
liberated. When we got home that evening, we were so calm that it felt foreign - it felt like we were on muscle relaxants. We hadnt realized
just how tense and jangled our nerves had been for the last [10] years.
Continued on next page
NEWS FROM THE NEST
PAGE
3
My Greatest Sacrice, Continued
But the first week was absolutely agonizing. The guilt we were feeling was unbearable and I spent much of my days
walking around in a bewildered fog, overwrought with worry that my baby was feeling abandoned and confused. I would
wake up in the middle of the night, in the midst of a panic attack, needing and longing for the need to hold my child and let him know that
what we were doing was out of love, not because we were giving up on him. And then, that would lead to me second-guessing our decision -
was this truly the best thing for him? Were we doing this for him or for us? Im not sure I slept more than two hours at a time that first week.
Marcus has now been there for a month and the change in him is dramatic - its absolutely mind-blowing. He has had only a couple
documented meltdowns the entire time he has been there, whereas we were experiencing 12-14 a day. We have visited him a few times, and
each time he is smiling, giggling, and CALM. We have never seen him this calm and relaxed (and no, he is not drugged). We walk in and he
says, Its Daddy! Its Mommy! Its Jordan! Its Brendan! And we all cry and we hug on him, and we give him tickles. He doesnt try to
pinch us or attack us. He is thinner, healthier and happier. You see, its the structure and the facility. He receives round-the-clock one-on-one
care, with scheduled transitions every 15 minutes, he is kept busy all day long, and every minute of his day is extremely structured. Hes
exhausted by the end of the day (in fact, he fell asleep in our arms during two of our visits). His caretakers work in shifts, so that everyone
gets breaks and is well-rested, they are not (too) emotionally attached, and when theyre on duty, they dont have to juggle other
responsibilities like family, careers, after-school activities for their other children, cooking dinner, making school lunches, and other various
unscheduled mishaps that life throws our way. Marcus needs constant activity, with absolutely no moment in time left for boredom. In other
words, we cannot possibly - no matter how hard we try or how much money we throw at the situation - duplicate that environment at home.
So we are now waiting for an opening at a long-term care facility, which would provide him with the same type of care he has been receiving
for the past 4 weeks. Without a doubt, its what is best for him. We know that now for certain.
The changes for the rest of our family have been dramatic too. It has been a learning process as we're having to get the hang of a new normal
around here. We are in a weird kind of fog much of the time. This is such an emotional roller coaster ride and it's so eery and weird around
the house. I truly didn't realize how MUCH stress we were under until the stress was gone, and more importantly how much of our time was
spent in survival mode. I laid down and read for awhile the other day at 4:30pm, which is unheard of. Colm got home and we went out for
Mexican food together at a crowded restaurant on a Friday night last week. Unheard of. Then afterwards, we walked around together leisurely
shopping at the little shops around downtown Apex. Unheard of. I went to the grocery store at 5pm the other day, an unheard of time to go
grocery shopping for me, bought last minute dinner items, came home and was able to leisurely cook a last-minute dinner and we all had
dinner together at 6:30 - late for us, but no one minded because no one was screaming for food and attacking me at 5pm. I was able to come
home, take my time unloading the groceries, and kept the pantry and fridge open because there wasn't someone digging around in the bags
trying to take all of the food before I put it away. I was able to pick up the kids from school the other day and they asked to go to DUNKIN
DONUTS (they were able to SAY it out loud, not spell it out). Not only did we go, we pulled into a parking spot, went INSIDE, and SAT
DOWN and talked together while eating our donuts. No screaming into a drive-thru speaker while Marcus is screaming bloody murder in the
backseat, kicking and pinching me, banging his head against the window because he wants the donut NOW. The mornings are weird... I get
up, have a cup of coffee, and sit. No cleaning up poop off the bed and carpet in Marcus's room, no fending him off while I'm trying to make
lunches, no trying to calm down meltdowns while getting everyone up, ready and out of the house, no figuring out which shirts to wear to
cover the bruises up and down my arms. Instead, yesterday morning, I got up, made bacon, eggs and toast for Jordan & Brendan, and sat
down at the table and TALKED with them. However... it's eery and quiet. And I don't know or understand this life. Chaos and stress is what I
understand. Brendan and Jordan are ok, but emotional. It's a confusing time for us all. Brendan is especially upset, because Marcus is his
special buddy and he misses him. Jordan understands, but says she doesn't know how to feel, she feels sad but relieved. The feelings are
confusing and double-dipped - we are sad, we miss our boy, and yet we are relieved to get a break from the stresses of autism. And so we are
getting family counseling.
But the knot of anxiety in my chest is starting to unravel. We are spending more quality time together. We are
able to be spontaneous for the first time ever. We are able to go out to eat and enjoy ourselves. We are doing
family movie nights and family game nights. We are going out for ice cream together. We are laughing. Our
marriage is stronger than ever. Theres still a heavy weight that is present - the knowledge that 1/5 of our
family is missing. But I suppose that the old saying Quality, not quantity applies more than ever here. The
time we now spend with Marcus is absolutely amazing and full of love and joy and pure quality. More
importantly, Marcus is finally happy. And that right there is definitely worth the greatest sacrifice we have ever
had to make.
*****
3 Irish Jewels Farm | (919) 602-9883 | www.3IrishJewelsFarm.org