I am the mother of three children, the oldest being Lil' D, who is 10 years old and has moderate to severe autism. Lil' D is nonverbal and sometimes aggressive. He can't read or tell me why he can get suddenly sad or angry, but his receptive skills (how he understands and follows directions) are remarkable. He also has a real connection to close loved ones. Raising a child with autism is a constant challenge, and being his mother is an exhausting, exhilarating, and lonely roller coaster ride.
Amal, our second child and our only daughter, is 7 years old and Hamza, our youngest, is 3 years old. With the varying personalities of three children (plus both sets of grandparents, who support us and often visit from either India or Maryland), my husband and I feel both overwhelmed and blessed with love and support. How do we keep everyone happy and moving forward while assessing all the moods, behaviors, and responsibilities of Lil' D's needs? It is difficult to paint a portrait of what it's like to manage the day-to-day life of a child with autism, but here I offer a realistic view of parenting a child with special needs.
Like many children with autism, Lil' D thrives on predictability and routine. His bedtime ritual is simple: Around 8:45 P.M., I announce bedtime. Most days he'll go to the bathroom peacefully, put on his pajamas (with instructions or assistance from me), wash his hands and face, get tucked into bed, and fall asleep on his own. Then there are times that he'll scream, cry, and hit himself on the head. I lie with him under the covers, rubbing or patting his back (if he lets me). This can go on for five minutes to hours, until he falls asleep from exhaustion. Sometimes I order him to stop or I whisper prayers; sometimes just my presence will calm him.
Mornings are a delicate dance, and every minute counts in getting out the door on time. I handle the mornings mostly solo -- I get up first, arrange breakfast, put out meds for Lil' D, and then wake the kids. I wake Lil' D first because he needs assistance with dressing, washing his face, cleaning his teeth, and putting on shoes. The morning is often dictated by his moods, so I find it easier to help him through the routine and then work on independent skills after school. Lil' D and Amal have 15 to 18 minutes to eat breakfast before school buses arrive. Lil' D always has the same thing (pancakes), but I prompt him to take a bite or I feed it to him myself. Usually, I can expect one or more morning outbursts, but I can't blame him. He's sleepy and I'm marching him through an early routine. Yet almost every time we walk to the bus, his mood lightens because he loves going to school.
The hours a child with autism spends at school are crucial, so getting the right program in place is important. It's all about the relationship among the child, parents, and teachers, plus a "team" that includes the principal, county autism specialist, occupational/physical/speech therapists, and other aides. An individualized education program (IEP) that can be constantly shaped and restructured is also vital as a child grows, regresses, and succeeds or fails at mastering goals.
Last year, the fall semester was a daily heartache. Everything was new for Lil' D and that was a disaster for a boy who thrives on familiarity. Through persistence, nagging, and politeness mixed with firm threats, I was able to advocate for Lil' D -- arranging a car service for him, changing his IEP, instituting a functional behavior analysis (FBA) that would result in a behavior plan, and securing him a spot in a private autism summer school program (paid for by the school district). This year has been much better. His team supports him and is on top of things. Lil' D enjoys school so much that he prefers its structured routine and individualized attention more than home.
When the bus arrives, I (or his grandparents, when they are visiting) meet Lil' D at the bus door and escort him into the house. His demeanor when he comes off the bus usually sets the tone and schedule for the next few hours. Will he be happy or sad? Will he seek hugs and tickles or want to be left alone? I read the signs to know what the next two hours will be like. At the start of this school year, he left the bus upset, crying, and hungry. Now, whether he's upset or not, Lil' D comes straight inside and immediately requests beads. Our house is littered with strands of metal beads, which are his favorite thing. He will spend the next hour twirling beads repeatedly on a variety of objects and pairing this perseverative behavior called "stimming" with loud vocal noises. (This can get annoying, I'll admit.)
Many kids with autism have something they "stim" on -- it alternately grounds or excites them, and they withdraw into that particular activity and avoid dealing with the world. The bulk of our work with Lil' D is to pull him out of the silent world he retreats into, but after he's had seven hours interacting with teachers and aides, I allow him an hour of "stimming" time followed by a snack. Many kids want to be left alone after school, and I think Lil' D is no different, so I honor that.
When Amal was younger, she was worked into Lil' D's schedule, engaging him in special sibling therapy and organized playtime to teach him to pay attention to her. Now, in addition to schoolwork, Amal has after-school activities (such as soccer in the spring), playdates, and language lessons with her grandmother. Meanwhile, Lil' D sees therapists who visit him on four weekdays for two hours each day. Hamza, the youngest, is living the easy life for now. We are still bound by Lil' D's schedule and his limited tolerance for multiple activities. Almost everything we want to do for our kids or anywhere we want to go has to pass this test first: How will Lil' D manage? Is it worth it? As the kids grow older, though, it is becoming more complicated to handle natural sibling rivalry and attend to individual needs. How will I manage Amal's schedule with Lil' D's? Hamza's needs haven't even been factored into the mix yet.
I am blessed with the incredible amount of love my kids share for one another. In my household, we tend to think that our daughter, Amal, is the heart. Her bond with Lil' D is the strongest, and she is his biggest helper, cheerleader, protector, best friend, and de facto older sister. She has taken her fair share of knocks from him, but she never holds it against him; she has an incredible amount of patience and tolerance when engaging with Lil' D, teaching him to pay attention and play with her.
Yet as my children grow older, the inevitable double standards are harder to navigate. There are different rules for the kids. Intense, short tantrums happen frequently throughout the week where Lil' D may cry, scream, or pinch. Sometimes, without warning, he has longer and more aggressive tantrums, and this is upsetting to the younger kids. I worry about them seeing Lil' D angry, but I trust that they will follow our example of unconditional love for him. Still, I feel for Amal, who has responsibilities and rules to follow. She gets stuck between her older and younger brothers. I worry about a day when she may accuse me of not being fair to her.
Lil' D's home therapy is a luxury many parents can't afford, so I give thanks that we can manage it. Home therapy serves three purposes: It keeps Lil' D occupied and his schedule on track (filling up the hours of a day can be difficult for him), teaches him useful life skills, and allows me to focus on the other kids. We've had home therapists for nearly seven years now, and they are like intimate family members. At its worst, when Lil' D is unresponsive or the therapist is sub-par, therapy is glorified babysitting. At its best, home therapy is a very useful productive time when Lil' D learns important life skills, for example, how to connect with his siblings, button his shirt, put dirty clothes in the laundry, and bathe himself.
This year we have two wonderful therapists who have instituted community-based instruction (CBI). They take him out to grocery stores, restaurants, the park, and other fun places to teach him how to interact socially, order food, give money to a cashier, drive a grocery cart, pick items off a store shelf, load groceries into the car, and put things away at home. I don't know what I'd do without home therapy. The sessions are gold to me and I won't give them up -- I have peace of mind that he is in safe hands.
By 6:30 every night, Lil' D is circling the stove, trying to see what's cooking. This kid's stomach is a clock, and he wants his meals on time. If dinner isn't ready, he throws a tantrum. He's also a picky eater and has followed special diets in the past, so we cook at home nearly every night. The evening meal is an important time when we come together as a family and share our day. It's also a hectic time when the kids are complaining about the food, and I'm constantly enforcing manners. Lil' D usually picks the meat out of his food, eats about half (while spilling rice messily everywhere), and runs off while also coming back to take more bites.
My rules are: Sit in the chair, eat the entire meal, and say "All done" at the end. I'm also teaching him how to set the table. Rules and consistency are important with Lil' D. If I don't demand proper behavior over and over again, while frequently enduring outbursts and pinches in the process, Lil' D will not learn any dinnertime etiquette. Still, I pick my battles. If he really doesn't like the meal, I will feed him. I try to stick to the rules all the time, but often it's impossible.
After dinner is one of my favorite times of the day. I've usually checked everything off my list: sent the kids to school on time, worked at the office, handled the after-school routine, made it through dinner, and prepared for the next day. If we're lucky, there are 30 minutes to an hour for us to relax and play before bedtime. This time can get taken up by bathing, if Lil' D hasn't already showered during therapy time, but I don't dread that because he loves showers. Usually, though, all of us vegetate on the couch while Lil' D twirls beads or spins in a chair. If we coax him, he'll join us on the couch for cuddles and tickles. When Lil' D's paternal grandmother is visiting from India, this is one of the best times for bonding. She'll watch Indian shows on TV, and he'll wiggle his way into a small space behind her. She will tickle him and tell him she loves him. This is a time with little or no demands on Lil' D. We want to bring the energy level down before bedtime, and this is a time when we all try and connect with him before the next day begins.
Copyright © 2011 Meredith Corporation.
Dilshad D. Ali is a journalist and editor who has written about autism for Azizah Magazine and Beliefnet.com. She has advocated for autism insurance legislation in Virginia, where she is based.