Autism, Friday fun and Sunday sorrow

Jerri S. Kaiser

Growing up in the rural South, Friday nights were the highlight of my week. I didn’t have much entertainment, just long country roads interspersed with verdant green cow pastures, rundown barns and chicken houses. Friday night meant no school for a few days and the “big city” awaited (the city being Elkin, North Carolina where we’d cruise the roads and meet up at the car wash or Speedy Chef). I hand-washed my chocolate brown 1977 Ford Mustang with the caramel covered roof after school in the last vestiges of daylight, being sure to douse it with Armor All. The excitement of hanging out with my friends and the possibility of meeting new cute boys kept my heart beating briskly in my chest. I thought nothing could ever replace the joy of those teenage Friday nights.
But then along came Jared.

He was the cutest little thing I’d ever seen. I could not believe he was mine. He walked at ten months, stacked 11 blocks before he was 1 year old, and he had the biggest blue eyes I’d ever seen. The joy that child showed when seeing objects fall was incredible, his laughter infectious. The first year of his life I felt like I was the luckiest woman in the world. But then things changed and he began exhibiting signs of classic autism. Earlier I’d worried about his lack of separation anxiety and no fear of strangers, but I just convinced myself he was friendly and had a firm attachment to me. I didn’t want to believe there was something wrong until I could no longer deny it.

Years of intensive interventions followed and we had a rollercoaster ride. At age nine things got worse and he was placed in the hospital for six months.

Then, at eleven years old, my firstborn son was moved into a group home for special needs kids. I was told he was one of the youngest ones they had accepted into the system. You see, Jared is a big kid for his age and his behavior at the time made his presence in our home, where we have three younger and smaller children, risky. It was the toughest decision we’ve ever made and, while it was a good one for both Jared and the rest of our family, it has also been terribly, terribly painful for us and for Jared. At first I thought I would not survive it, that the pain in my chest would surely take me down. When he cried over the phone in agony, it was as if a sabre was ripping my veins from my body and searing them on a fire. My face ached from crying and I didn’t want to get out of bed. I was disgusted with myself when I looked in the mirror. “Failure” was all I could think. This went on a long time…

To alleviate the excruciating pain of separation, Jared comes home for “home visits” nearly every Friday night. Shrieks of joy can be heard emanating from our front door as Jared arrives. “Jared!” I cry as I rush to him and give him a bear hug. Suddenly, those childhood Friday nights pale in comparison to the all-is-right-with-the-world feeling I get when my boy is home. A huge smile is always on his face as he hugs me and habitually introduces me to whomever has brought him to our house that week. (Jared is big on introductions, even to cats and inanimate objects. He will say “Mom, say ‘Nice to meet you, Christian.’”) Then the door shuts and our weekend catch-up begins.

Usually I’ve made him his favorite banana oatmeal walnut muffins and he will grab one of them and head to his room to play games on the Wii. Later on he is taken to Family Video and Jitter’s Coffee Shop, where he knows everyone and greets them heartily. The staff know him as well, to the point that Jared may be the best known kid in Churchville. He is certainly the most gregarious. (It is amazing what his medications can do because off of them he is in his own world.)

The other children are not as thrilled with Jared’s return as I am. He occasionally trashes their rooms or deletes their video game data. He eats all their favorite snacks and picks on them (although I remind them that all big brothers do many of these behaviors). But Jared is also our little “Catcher in the Rye.” If something is broken, Jared’s your boy. He will rush to the problem and try to fix it. Just this week I was getting dressed when the TV broke as Julian was watching a show. Before I could make it to him, Jared had swooped in and fixed it. I remind Julian of this help and encourage him to thank Jared. Every hour I have teachable moments when Jared is home, both for him and for my other kids. The hope is that ultimately being raised with a special needs brother will make my children more empathetic and patient. Right now it just makes them frustrated.

After everyone is asleep on Friday nights, I sometimes get up and listen to the gloriously quiet and still house. In a family of six, these are rare moments. I tiptoe to where Jared is and watch him breathing, caress his still downy cheeks (he is just as soft and silky-skinned as the day he was born), and I contain a bout of crying as I feel so grateful to have my whole family together under one roof. Usually the tears win out but I’ve gotten used to being able to cry easily since he was diagnosed over ten years ago. Surely my body must be depleted of salt by now. At least as time has gone on the tears are mainly those of joy.

I sometimes tell friends of mine who cannot take another moment of their newborn’s nighttime wakings that they should consider the alternative. Yes, I know it’s not fair, I too remember the body-draining, mind-numbing newborn days when you put the milk in the cabinet and the glass in the fridge because you were just bone tired. Jared didn’t sleep more than 4 hours in a row for 4 ½ years. I’ve been there. But now that I know what it’s like not to have your “baby” home, I want people to feel grateful for that chance to be with their child. We never know when that time together will be gone.

I’m not saying everything is all roses and sunshine when Jared comes home. Some weekends he is just off and we can’t figure out why. About a month ago he was angry at me for disciplining him and he pounded me on my forearms and left a few small bruises on me. He is a big boy and I felt that up close and personal. But he regained his composure quickly and we were able to finish the weekend visit. That was the first time he’s behaved that way in over a year so I count it as progress.

And there are times when things don’t go as planned and Jared becomes quite upset. However, now that he’s older and has had years of training and therapy, he has learned that sometimes things change and that’s okay. He goes with the flow more now.

Still, Saturday passes into Sunday morning and I know in the back of my mind in a few hours my boy will be leaving. I make a nice brunch of bacon, toast and eggs which usually wakes Jared first and we have some nice time alone while the others sleep in. Sometimes I make him a batch of those banana muffins to take back to the group home with him, a little bit of home for him and a way for me to feel like I’m still feeding him even when I’m not with him. (Just typing that makes me well up.) There is something so sad about me not making his meals every day, about not tucking him in each night, about not greeting him home from school or sending him on the bus to school, about not hearing how his day was in person, about not unpacking his bag, even about not doing his daily laundry (or at least helping him do it). Modern as I may seem to be, at heart I am an old-fashioned girl. I want to baby my kids as long as I can by making yummy food for them and insisting that they let me kiss their cheeks and hug them until the day they move away for college. I like to sop up every single morsel of their childhoods because it is my most cherished role, my most precious experience.

While the other three kids are starting to get a little embarrassed of their silly old mother, Jared never is. He lets me love him the way I want to, with hugs and kisses and banana muffins. I imagine he will always let me love him this way.

Then something happens.

Around 2:00 p.m. each Sunday afternoon, Jared begins to make “X” patterns in the living room, running wildly from couch to couch with arms flapping, making indecipherable noises, his eyes looking vacantly away and his mind clearly not present. It is hard to reach him in this state no matter how much I call his name. I have to physically touch his arm to break him out of this trance. This has been going on for 10-12 years, ever since he could walk and make vocalizations.

Once this happens, I know it is time for him to go back to the group home. If he doesn’t, then the chaos begins. He will accidentally break things and he begins to purposely bug the other children and destroy their game data. He laughs and says “Haha, gotcha!” as he does these things and I am mesmerized by the sudden change in his demeanor. I have yet to figure out why it happens but it does.

So I pack up his suitcase (no little boy should have a suitcase for leaving his family each week), layering in the few items of his clothing that I washed for the weekend (the group home says I don’t have to launder his clothes but it makes me feel closer to him, like I am still mothering him), and then I call the other children downstairs to say their goodbyes. His sister is only one year younger than him and they have a closer relationship than Jared has with his two younger brothers. Sometimes I think of Madison and Jared as fraternal twins. I even dressed them alike when they were babies. It warms my heart to see how loving they can be with each other.

Then my husband comes downstairs and I hug and kiss Jared goodbye. I begin to cry (happens every week, can’t help it and it’s been over 2 years now) and Jared asks me to stop crying. He, being the little “Catcher in the Rye,” cannot handle me being upset. So I suck it up and put on a happy face for my boy. But the moment the door shuts I sit down and cry for just a minute. Then I get up and go be a mother to my other three kids and wait ‘til next Friday when my family is all together again.

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