I’ve been reading Nathan and Sally Clarkson’s book Different, and it has sparked a lot of memories of the struggles we have faced with our “different” child, L6. Actually, it’s interesting to label him the different one because occasionally he’s the most functional among us — just not in predictable ways.
L6’s Medical Problems
L6 was a fairly typical baby who grew into an overly-observant toddler — but nothing too out of the ordinary. You could just tell the gears were really turning in that pre-verbal 6-month-old brain his. His struggle began between 6 – 12 months of age because he would not eat solid food. Then, at 12 months of age when he started drinking dairy milk, he started to change completely. He couldn’t sleep. He couldn’t be comforted. He still couldn’t eat. He began vomiting a lot. He started losing weight. He started getting fevers and rashes constantly. He stopped the little bit of talking he was doing. He started crying more often than not. He started banging his head on the floor. It was scary.
I had him screened for autism, which came back negative. He began occupational “play” therapy, which didn’t do much for him. I pressured our pediatrician to perform food allergy blood tests. She didn’t want to do it because he hadn’t encountered much food in his life and was worried it would be a waste — it took a whole vial of blood per food item and would give a false-negative if he hadn’t encountered the food yet. I finally got my way and had him tested for dairy, eggs, and soy (three of the most common food allergies). Getting the blood sample out of him was horrific.
Finally, we had an answer to work with. He had a very low level allergy to dairy, which was the only food he was consuming (he drank a lot of milk because he was so hungry). It was such a minor allergy that he never outwardly reacted to it with a rash or swelling. His allergic reaction had systematically killed all of his gut flora and intestinal cilia. It’s likely his poor gut health was causing constant headaches and stomach aches. The poor kid was suffering! And, on top of that, we (his parents) were exhausted (and I was pregnant!). L6 never slept more than a few hours at a time; instead, he cat-napped constantly.
Once we knew what to correct medically, we began a slow process of change around 15 months of age. Taking the dairy out of L6’s diet was just the first step. Like turning around a giant ship, he couldn’t turn on a dime.
Diet. We couldn’t be sure that dairy was L6’s only allergy, so we put him on the GAPS diet immediately to help relieve his chronically inflamed digestive tract. I felt like I had no idea what I was doing, but since he didn’t eat at all, L6 didn’t have a preference for Cheerios or Toddler Puffs. To his knowledge, everyone ate baked chicken and organic Lay’s potato chips. I had to watch his diet in an obsessive manner since we were attempting to level him out and then slowly reintroduce food categories one at a time. To many outside critics, this made me look crazy and over protective, especially when he started feeling (and acting) a little more normal.
Speech Therapy. Around the same time we altered his diet, L6 began speech therapy. It wasn’t that he had a physical impediment to talking. He just wasn’t talking, and our state had a program that sent a speech therapist to our home once a week. His therapist taught him (and me) basic baby sign language. I didn’t expect him to participate, but he picked up on it rapidly and began to communicate in ways other than crying. In fact, when she taught him the signs for basic colors, he ran around the house pointing to objects and signing their colors. The therapist and I were both amazed! I was amazed that he was communicating; she was amazed that he knew his colors.
Negative Coping Patterns. It wasn’t long before L6 stopped using his baby signs and began talking instead, but it wasn’t all a bed of roses at that point. L6 had some established methods of coping — some were positive and some were not. One of his methods was to cry and to be held for long periods of time. If that didn’t work or couldn’t be done, he would have a complete and total meltdown during which he would cry, scream, writhe on the floor, throw objects, and rip things apart. The end result of one of these epic tantrums was burst blood vessels around his eyes, which looked scary combined with his emaciated frame. When the fit was over, he would just completely snap out of it, humbly request a drink of apple juice, and then fall deeply asleep. Often, after a fit and its ensuing nap, he would apologize. He was two years old.
Positive Coping Methods. We slowly replaced some negative coping patterns with positive ones. One method was to talk about feelings a lot. We began to see that if we could stop an onslaught of negative feelings before they snowballed, we could avoid a tantrum.
- Finding the Positive Feelings: Sometimes it seemed like negative thoughts could spiral him downward. It’s not that we didn’t want him to experience a range of emotions, but we did want to teach him to be in control of them. A phrase we often used was, “Choose happiness.” When I could see that he was feeling frustrated, I would remind him to choose happiness, which meant both to mentally look for the positive and physically tell us what he needs and/or physically change his situation. It sounds trite, but it really worked, especially if we could get his full attention and speak (kindly) almost nose-to-nose with him; otherwise, we wouldn’t be heard. The world was too distracting. Around that time Daniel Tiger’s Neighborhood debuted on PBS Kids. L6 began singing songs from the show that were basically telling him the same message: “When something feels bad, turn it around and find something good” and “Close your eyes and think of something happy” were two particular favorites.
- Sometimes Controlling Situations: L6 was sensitive to people touching him without his consent (surprise touches). He was also sensitive to large crowds (visual over stimulation), and he was really bothered by anyone singing along to music because he wanted to hear it “the right way” without interference. And, of course, he didn’t want to wear any uncomfortable or restrictive clothes! He couldn’t live in a bubble, so managing his senses was a compromise — a tight rope to be walked daily. We avoided putting him in situations that would fire on multiple sensitivities (e.g. a loud, crowded room), but we also began talking to him about what to expect if he was going to be challenged, and then we let him be challenged a little bit every day.
- Reciting Poetic Words: One of the most rewarding (and socially acceptable) coping methods we found helpful was reading board books. L6 found great comfort in hearing the same combination of books read aloud to him in the comfort and quiet of this bedroom, no matter the time of day. Goodnight Moon, Bear Snores On, Going on a Bear Hunt, and Daddy’s Lullaby were a winning combination. He enjoyed hearing the rhymes and/or the predictability of the words and pictures. I think the grounding of his quiet bedroom and just the motion of walking down the hall towards his room was comforting. Ideally, we laid on his bed and read them all, but if we were out of the house and in a difficult situation, I could just recite them from memory and that got him through. I was the person in Wal-Mart pushing a cart and reciting Good Night Moon to a small child who had his face buried in my neck.
- Movement. One coping skill that popped up all on its own was movement — specifically jumping and flapping his hands. Anyone familiar with “stimming” (short for “self-stimulatory behavior”) will recognize this pattern of behavior, which is more common in people with autism. Although L6 does not have autism (that we are aware), he does share the trait of over-sensitivity with those who do. Stimming is a repetitive action, like rocking, flapping, pacing, or flicking fingers, that can help a person regulate their excitability. Lots of people preform stim activities in less noticeable ways, like biting their nails or tapping their pencil. There is nothing wrong with stimming. If movement helps a child cope, and their chosen type of repetitive movement doesn’t hurt themselves or others, movement as a coping strategy should not be discouraged. L6’s older brother wanted to discourage his jumping and hand flapping (because it was “un-cool”), but we had to lay down the law that L6 is allowed to move in his own space, and A9 was not to discourage or disparage it. Jumping is a common reaction to excitement for young children. We have actually not had anyone comment on L6’s stim behavior (besides his brother).
Taking on Another Label. For years, we really didn’t know how to describe L6. From the time he was 15 months (at his least functional) to now that he’s almost 7 years old, we could only tell people things like, “He thinks differently,” “He sometimes acts sensitive,” “He can’t handle ingesting neurotoxins like MSG, aspartame, or food coloring” (though he has outgrown much of that). It used to be very difficult to warn new people (who might be in authority over him, like a VBS teacher, for example) about his proclivities. I didn’t want him to be punished for utilizing the coping skills we had taught him. But, as L6 has matured, it has become less vital to warn people. He has found a balance of becoming less sensitive and dealing with his sensitivities in socially acceptable ways. One thing I feared, though, is that the world would dictate to him who he is, so I was so happy when we found another way to describe him — a new label that I hope will bring freedom instead of suppressing him.
Asynchronous Learner. The new label of “asynchronous learner” (formally, and sometimes more prominently, known as “gifted”) has helped to explain some of his early symptoms (over-sensitivity, for example) and also to open up a range of possibilities. We are lucky to live in a school district (even though we are a full-time homeschooling family) that acknowledges the need for “gifted” programs and welcomes public, private, and homeschool children into it’s one-day-a-week program. In fact, I was happy to hear the director of our gifted program explain that thinking at two standard deviations above the average IQ is just as challenging and requires just as much assistance as thinking at two standard deviations below average.
We had, in fact, already been dealing with L6’s older brother A9 who thinks at one standard deviation above average, which had presented its own challenges (though not to the same extent and without the food allergy). A9’s problems are a lot more common, like having intense emotions and seeking friendships with adults or with high IQ children or children who are 3 or 4 years older than him.
Telling someone your child is “gifted” or an “asynchronous learner” does not always illicit the same level of sympathy as telling them your child has a learning disability, so “gifted” is not a label that I readily share with people unless I know they understand what it means — similar to how I don’t tell strangers that we homeschool unless I know they will understand what that means. But, having the label and getting to know a community of asynchronous-learner parents has helped tremendously.
Accepting the Label of “Different.”
By this point, you can probably see why L6 has earned the label “different,” and if you have read the Clarksons’ book, you probably see that L6 and Nathan Clarkson had very different experiences. Nathan’s OCD, ADHD, and learning challenges did not apply to our L6 (he had his own problems), but the way Sally Clarkson describes feeling confused, lonely, defeated, and frustrated and how she finally decided to raise her son the best way she knew how definitely resonates with me.
I also feel particularly protective of L6 — while others might be judging his behavior (or my reaction to his behavior), I slowly stopped feeling the need for him to “act normal” or fit into someone’s idea of how a child should be. I stopped apologizing for or explaining his atypical behavior (unless it was actually rude). Yes, our family had to carve out a huge space for L6 to just be himself. To the outside observer, this probably appeared co-dependent. I don’t know any other way we could have done it. We didn’t want to depend on L6 needing a somewhat controlled environment or needing to not eat typical kid-friendly junkfood or needing to recite Goodnight Moon in order to calm himself. It was not fun having to explain to anyone and everyone that L6 was “different” (we didn’t have any tidy acronyms to describe his challenges), but those closest to us just embraced our struggle and him as we were.
Words of Encouragement
In the Clarkson book, I found the following passage particularly encouraging:
As I prayed for Nathan and pondered him over the early years of his life, I gradually began to understand more fully that he was not a problem to be addressed, not the sum of his behavioral performance. His worth to God was not about his ability to fulfill other people’s expectations or act according to accepted norms. Instead he was a beloved child of the Father with a specific role to play in God’s ongoing story of redemption.
If you have a “different” child — whether you’re still in the crying and tantrum stage or have a label or diagnosis to cling to — I hope and pray that you will find the courage and the strength to see that “different” isn’t bad. Different can be strengths and weaknesses all tied up together, but different is how God has created your child, and He knew that you are the perfect person to to receive this gift. So, yes, seek the diagnosis. Work through difficulties and celebrate victories, but never lose sight of the gift.
Until next week (or so).
- Black Beauty by Anna Sewell (family read aloud)
- Different: The Story of an Outside-the-Box Kid and the Mom Who Loved Him by Sally Clarckson and Nathan Clarkson
- The Terrible Speed of Mercy: A Spiritual Biography of Flannery O’Connor by Jonathan Rogers
Moderately challenging books:
- The Plantagenets: The Warrior Kings and Queens Who Made England by Dan Jones
A Raisin in the Sun by Lorraine Hansberry (for my co-op class)
A Connecticut Yankee In King Arthur’s Court by Mark Twain (for my co-op class)
- Gilead by Marilynne Robinson (reading with CiRCE Institute’s Close Reads podcast)
- Mind to Mind: An Essay Towards a Philosophy of Education by Karen Glass
- For the Children’s Sake: Foundations of Education for Home and School by Susan Schaeffer Macaulay in conjunction with Brandy Vencel’s Start Here study (for my CM study group)