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My Greatest SacrificeLEARNING A NEW NORMAL

By Erin OLoughlin

ur son, Marcus, was diagnosed with severe autism atthe age of 3. And yes, I was one of thoseparents in theearly days: I would read any book I could get my hands

on, trying to find the magic potion that would be the rightconcoction for my baby. Back in those early days, I didnt care ifI had to dabble in witchcraft, Id try anything. Thankfully myhusband Colm, being a physician, was more realistic and kept megrounded. In the beginning, he made a deal with me: Hed bewilling 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 towardsrecovery - or, at the very least, improvement - began. One-on-one Applied Behavior Analysis therapy ata 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 actuallycringe 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 theinfuriating 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, youwill have two completely different functioning individuals. In the end, it really all boils down to roadblocks in the brain, developmentalcapability, and degree of disability that sometimes cannot be realized until the child is older. And as Cammie McGovern states inAutisms

Parent Trap, In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic childrenfeeling 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 howyou do it, I couldnt do what youre doing. But you know what? YES YOU COULD. AND YOU WOULD. You would be doing the samething 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 physicalabuse from Marcus, screaming hour-long meltdowns that turn aggressive, banging doors off of their hinges, opening car doors while weredriving on the freeway, smashing his head through windows, digging in and emptying the trash, chewing up and destroying jewelry andsmall 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 Icounted up the hours I had spent in IEP and Behavioral Intervention Meetings at his school during a 6 week period alone - 9 hours. At theage 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 DavidRoyko states in his This American Lifepodcast, Almost daily, we have experienced things that other parents would recount for the rest oftheir 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 oneday: A man walked by and casually put his hand on my shoulder and said, Hang in there, Mom and then kept walking - he knew hecouldnt 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 throesof 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 tohis 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, hestarted screaming and banging and kicking on his door, to the point where I thought the door would come off of its hinges. Instead, I cameoff 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 Brendancame over to me, wrapped himself around me and said, Shhhh, its ok Mommy, well get through this together. It was then that I traveledoutside 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. Ishould be comforting himoverskinned knees and melted popsicles. Instead, I had allowed the roles to reverse and my 7 and 12 year old children had grown up way toosoon and had witnessed and experienced way too much. But who could save us?

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Me & My Boy,Photo by Carolyn Van Houten

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My Greatest Sacrifice, ContinuedThat 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 residentialcare? 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 hadthat 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 ouroldest 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 feltlike assholes. And so we tabled the discussion for awhile again, occasionally bringing it up to each other every time Marcus had a roughmoment.

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 Ispoke with that day even understood what I was saying, I was so incomprehensible. But I can say that every single person I talked with, everyone of them being state employees, was phenomenal, helpful, warm and caring. And I will forever be thankful to the people that have theheart 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 sheand 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 everythinghumanly possible, and still our son was not happy and we could not provide him what he needed anymore. The loving warmthof a mothers touch and the tireless commitment of our time, our money, our familys life and often times the well-being ofour other two children were simply not enough to overcome what we were dealing with. Simply put: Marcus needed moreand what we were trying to give him wasnt good enough for him anymore. And even though it goes against all parentalinstincts 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 beendiscussing 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 areality. It was that my son had hurt someone and that people around him were afraid of him. That strangers, even friends, were shocked andafraid 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 careof 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 letyou communicate. I cried that night in my friends stairwell like I had never cried before, grieving over a loss that cant even be put intowords. 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 Ihad 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 warehousebecause we were giving up on him. I was angry at those innocent parents of higher-functioning autistic preschoolers who would postcomments about how such-and-such therapy was doing wonders for their child, how they could really notice an improvement - how earlyintervention must really be the ticket. I was angry at the autism self-advocates, constantly preaching at me that autism is merelya different ability, not a disability and that they are perfectly happy living with their autism, in fact they wouldnt take itaway 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 thatthis entire movement of autism awareness seems to only focus on the higher-functioning individuals, completely forgettingabout this shadow population in which my family and many others reside. I was angry at autism. I could have handledautism, 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 weregetting the short ends of the stick. Why couldnt they experience a relationship with their brother, at least some kind ofrelationship? Why couldnt they see a happy and well-adjusted mother? It was all just so... out of my control. And I was angrythat 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 thanpacking for your child to send him off to a mental institution the following day. David Roykos experience of admitting their 13 year old soninto residential care was almost exactly like ours: After our meeting with staff and unloading [Marcuss] stuff, it was time for us to go. Itwas quick; a long goodbye would only make things harder... Very briskly, we walked down the hall and out the door, accompanied by thesound of [Marcuss] wailing. It was a strange feeling to leave an unhappy [Marcus] with strangers. The familiar urge to swoop in and try tocalm [Marcus] down and to protect others from any behavioral shrapnel was hard to resist. We felt terrible, but at the same time, we feltliberated. 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.

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My Greatest Sacrifice,Continued

But the first week was absolutely agonizing. The guilt we were feeling was unbearable and I spent much of my dayswalking around in a bewildered fog, overwrought with worry that my baby was feeling abandoned and confused. I wouldwake up in the middle of the night, in the midst of a panic attack, needing and longing forthe need to hold my child and let him know thatwhat 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 coupledocumented meltdowns the entire time he has been there, whereas we were experiencing 12- 14 a day. We have visited hima few times, andeach 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 hesays, 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-onecare, with scheduled transitions every 15 minutes, he is kept busy all day long, and every minute of his day is extremely structured. Hesexhausted 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 everyonegets 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 variousunscheduled mishaps that life throws our way. Marcus needs constant activity, with absolutely no moment in time left for boredom. In otherwords, 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 receivingfor 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 normalaround 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 aroundthe 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 wasspent 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 forMexican food together at a crowded restaurant on a Friday night last week. Unheard of. Then afterwards, we walked around together leisurelyshopping 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 gogrocery shopping for me, bought last minute dinner items, came home and was able to leisurely cook a last-minute dinner and we all haddinner 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 comehome, 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 DUNKINDONUTS (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 SATDOWN 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 getup, 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 makelunches, no trying to calm down meltdowns while getting everyone up, ready and out of the house, no figuring out which shirts to wear tocover the bruises up and down my arms. Instead, yesterday morning, I got up, made bacon, eggs and toast for Jordan & Brendan, and satdown 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 Iunderstand. Brendan and Jordan are ok, but emotional. It's a confusing time for us all. Brendan is especially upset, because Marcus is hisspecial buddy and he misses him. Jordan understands, but says she doesn't know how to feel, she feels sad but relieved. The feelings areconfusing 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 aregetting family counseling.

But the knot of anxiety in my chest is starting to unravel. We are spending more quality time together. We areable 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. Ourmarriage is stronger than ever. Theres still a heavy weight that is present - the knowledge that 1/5 of ourfamily is missing. But I suppose that the old saying Quality, not quantity applies more than ever here. Thetime we now spend with Marcus is absolutely amazing and full of love and joy and pure quality. Moreimportantly, Marcus is finally happy. And that right there is definitely worth the greatest sacrifice we have everhad to make.

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