Seeing the Negative Space
Our son Scott is a remarkable boy. He is an absolute joy, a miracle from God, who survived coming into the world 10 weeks early, weighing just 3 lbs. 5 oz. at birth, but thriving despite all the odds stacked against him. Now 5 years old, he remembers everything in shocking detail and draws correlations and analogies between things and concepts you couldn’t imagine a 5-year-old would possibly comprehend.
But, there is something outside of the realm of “normal” about him.
He has many obsessive compulsive tendencies. He must get dressed in the exact same order every day, and get undressed in the opposite order from which he dressed. He loves character toys and has sets from all different movies and shows from Tangled to Little Einsteins. While watching a movie or a show, he needs the characters of that movie or show lined up on the table in front of him, and he touches them the entire time the show is on, fiddling with them while he perfectly recites the dialogue he memorized the first time he saw it.
He is extremely loving and needs to touch constantly, sitting in your lap or affectionately touching your face when he’s talking to you. He can’t handle loud noises and even in his sleep will cover his ears when something is too loud. In a loud crowd, he wants to remove himself, separate from the cacophony around him. He wanders away constantly, without realizing he’s doing it. When he’s overwhelmed, he will lay down on the floor and rub his head back and forth.
I could go on. The point is, there things just keep manifesting. And Scott was getting worse.
This was one of the reasons Gregg pushed up his return home by several months. When Gregg was home on leave in July, Scott’s behavior was immensely better. Gregg is exceedingly patient and loving with Scott, and Scott is occasionally willing to try things – like putting his socks on after his pants – if Gregg is the one working with him, loving him, helping him cope.
Scott’s godmother is a special education teacher in another state. She visited this summer and within a few minutes with Scott pointed out to me half a dozen red flags that signal autism. She encouraged me to have him screened. Additionally, I have a few friends who have children with forms of autism who are encouraging us to have Scott screened. Then, last week, his teacher told me that she thought she observed some other-than-normal tendencies in his behavior and recommended we get him screened.
Gregg and I have been discussing it and praying about it. What we want is the best thing for Scott. Period. So, we’ve been doing a lot of research. In our research, we’ve watched some documentaries that were incredibly revealing – Generation RX being one that revealed in some detail just how very corrupt the FDA and PhRMA are and how over-medicated children are today and it was just appalling. A documentary entitled Loving Lampposts really — really — not only encouraged us but kind of made us feel like he did not need screening after all. As we talked about it and continued to pray about it and tossed around what we should and should not do, Gregg met a new work colleague.
This gentleman has a 10-year-old son who was born 11 weeks early. As Gregg spoke to him, and they started talking about their sons, it sounded like they were talking about the same child. This man has never had his son screened for anything. He excels at everything he does, and tackles monumental challenges for the sole purpose of tackling them. The two men discussed different outside “diagnoses” by well-meaning teachers, family, and friends and this gentleman said, “Maybe he does have autism or Asbergers. Or maybe he’s just exceptional. What he doesn’t have is a label.”
That really got Gregg thinking. Then he saw this in a presentation:
Everyone in the world recognizes this logo:
You’ve seen it countless times.
What you may not have ever seen, however, is that between the E and the X in the really lovely negative space is a subliminal message – an arrow that is intended to convey forward moving which I have highlighted here in yellow.
Now that you know the arrow is there, every time you see that logo from today until the end of time, you will see that arrow. It’s the same as when you buy a new car and suddenly everyone on the road seems to be driving the same car. It has to do with our perceptions. In the FedEx logo, the arrow has always — always — been there. It wasn’t hidden. It wasn’t even accidentally placed there. You just never looked for it before the way you will now.
A diagnosis in a child works the same way. Let’s say we get Scott screened and he’s diagnosed with “High Functioning Aspergers” or “Autism Spectrum” or something similar. Now, all through the rest of his school years, that will be his label to every single one of his teachers. No matter what he’s doing or how he’s performing, when they look at him the first thing they’re going to see is that arrow. They will, perhaps unintentionally, but inevitably, ignore the lovely symmetry of the rest of the message that is our son.
Understand that this is what we have come to after months of discussion, research, and prayer. It is what works for us. It may not be the universal solution for every situation. For example, I have a friend whose daughter needed that diagnosis. She needed psychiatric care, medication, counselors in schools armed with an IEP, and the facilities and learning aids offered by the special education department in her school. Through the years since she’s been diagnosed and they’ve known exactly how to better help her, everything about her has improved and she’s now excelling in school. It’s wonderful.
But, for us, we’ve decided at this time not to seek screening for Scott and rally for a “diagnosis” that would ultimately inhibit his potential. Within his current parameters, he functions fine. Concrete things like letters, reading, math, puzzles, and fine motor skills come ridiculously easy to him because he is, as his doctor says, hyper-intelligent. And while his is behind other children is some social skills, he doesn’t have the rages that some of my friends’ children have. He doesn’t have attention problems that other friends’ children have. He functions within his environment very well, and outside of it moderately well. For now, that will work for us.
Like I said, we want what is best for Scott. In the future, we may change our minds. But for now, we’re just going to keep working with him and helping him cope with the outside world, without an arrow on this chest.
Hallee
I’m so grateful for your visit, today.
You would bless me if you added me to your 
feed reader or subscribed 
via email.
You can also become a fan on 
Facebook or follow me on 
Twitter. I would love to see more of you!
I love your perspective on this. He sounds like a lovely boy with exceptional qualities.
What a blessing he must be! I agree with not labeling him. Meanwhile, I would consider digestive enzymes, and/or a gluten free diet and see how he responds to it.
Hallee;
As a mom who went for the diagnosis to open up therapy doors that were closed to us, as well because Liam’s needs were more pronounced than Scott’s, and someone who has done extensive reading on the subject, I feel for you! My I suggest another avenue to consider – while some of Scott’s traits may suggest some form of Autism, others don’t… and his need for quiet and some of the other behaviors you mention might warrant looking into Sensory Integration or Sensory Processing issues – there is a great book by Carol Krankowitz called the Out of Sync Child. It has some great ideas and strategies for understanding the impact that specific needs have on your child.
beautifully written Hallee!
Beautiful. YAY for Scott!
I was thinking the same thing!
I am with you 110% Hallee! Austin shows some tendancys to being on the Autism spectrum at times, and yet, I’m reluctant to have him ‘tested’ or ‘screened’ for anything. I see a LOT of Mark in Austin. Tendancy’s and OCD things… but if he’s doing fine, why mess with it? IF I did have him tested, and something came up, he would be on the ‘high end’ and I’m 99% sure they wouldn’t do anything for him anyway. So why mess with it? Good for you for sticking to you guts and doing what YOU think is best for your child and not what everyone else thinks is best!
I applaud you for doing what you feel is best for your child. As an educator, I have all too often seen a label slapped on a child just because a quick fix was needed. We are too quick in our society to turn to medications to fix our problems and I really wish more parents took your approach. Scott sounds like a wonderful boy!
Good for you Hallee!!!! As a parent who has struggled with diagnoses and meds (along with the stigma) in our family, I applaud you and Gregg! We have kept “our little secret” from everyone except those that we decide need to know (and that does not include teachers, coaches or school officials). My DH and I agree that children get labeled for life and it’s a totally unfair burden on them. We are working on reducing and eventually getting rid of the meds that are only taken for school. It’s a shame what the world has become! Our child is super bright and intelligent, too.
Thanks for the link to GenerationRX. Can’t wait to see it!
I have no doubt in my mind that he has sensory issues. He is also uber sensitive to light – when he goes into a room, he tries to turn the lights off, saying that the light burns his eyes. I’ll look up that book -thank you!
Scott has had in-depth hearing tests, including having electrodes placed all over his head monitoring his brain’s reaction to sound stimuli. Because he was a preemie, his eyes and hearing are checked regularly by specialists.
Scott sounds like my Carson. A beautiful, intelligent, meticulous child. Carson must be in control of the situation and it has to happen the same way each time. Sometimes he wants nothing touching, not even underwear, and sometimes he has to put on 2 pairs of socks to help him feel secure. I agree with you 100% right now. Carson is my child and we don’t need an offical “diagnosis.” Maybe in the future we may need outside support but he is thriving and happy right now. And so are we :) Bless you, Hallee!
You would really benefit by watching Generation RX. You will never accept the ADHD label again after seeing it.
Hallee you and Greg know whats best . I have a special needs son who was tortured because of his labels as a child. He is going through the most horrific time of his life from the right now ! A senior prank pulled on him and if you only knew what it was you would die inside! I have been crying everyday for almost 2 years as he still is dealing with this prank from a sick person he went to school with ! Maybe someday I will explain it to you. However another part of your writting concerned me. The touching of your face and the sensative ears to noises. Please have Scott get a in depth hearing test. Not the one in the Drs office during a physical but one by an audiologist. My son did the same as Scott for years and I had him tested at almost 4 yrs and found out he had a 50 % sensanoral hearing loss in both ears. Made complete sence to me once they told me that he had been reading lips since birth! That explained him touching my face and lips all the time! he was studying me to understand me! Its pretty amazing to think that a baby learned that touching your lips would teach them what you were saying! It still blows my mind! Makes me wonder just how much an infant does understand! its up to you if have his hearing tested or not. I just had to make the point to share with you about my sons findings when he was doing the same thing. I hold Scott and your family in my prayers always! God bless all of you ! xo
Wow. That’s why God gave Scott to you and not another family. The world in general doesn’t understand how God works or what His reasons are. I am a neonatal nurse, and I’m so glad to hear that Scott didn’t just survive, but is growing and learning! :>)
I pursued a diagnosis when Sarah was 3, due to some horrid emotional outbursts. Literally kicking, screaming, biting, you name it. She had to be carried out of places. I had just given birth and was at my wits end. The horrid tantrums had been going on for a year. Her pedi immediately said ADHD. He then started writing out a script. I asked for a psychologist. With 12 months of therapy, she has not given Sarah the label. What we found was Sarah needed some therapy to learn how to listen better, I needed some skills to get through to her better.
Today Sarah is in Kindergarten and is excelling, without medications. We went through the long process with teachers and evaluations, she may be be ADHD, but her teachers believe she is not ADHD, so her label is being erased, for now.
I understand your position and applaud both you and Gregg for working with your son, not against your son. Too many people rush to judge and label what isn’t socially acceptable to them.
A label *can* be helpful – when it opens doors to therapies and services (and, honestly, public and private funding) that a label-less shild who is just struggling, isn’t qualified for.
It also can assist future teachers in understanding the specific needs of your child. And it protects him/her legally in a way that “just a mom” and “just a dad” cannot do without a label.
It can serve, as well, as a buffer – to protect your child from future misdiagnoses. As an example, Ellie’s Kindergarten teacher had a hard time getting her to pay attention. Since she had already be diagnosed with a hearing loss, I could use this classroom situation as a lever to get her a personal FM system for use in the classroom. As soon as the teacher started wearing the microphone and Ellie had the receivers attached to her hearing aids, wow, she didn’t act like an ADHD child any more. Because she could hear. In this case, a correct diagnosis (or label) kept her from getting additional, incorrect, labels.
I’m not saying that you’re making the wrong decision. Just that, there are plusses and minuses to everything. And I urge you to keep your heart open to the possibility of further testing, down the road.
Oh, and one more thing – if your testing is done privately (not through the school district) there is no reason why you need to tell anyone what the diagnosis is – but it could help you to understand the intricacies of Scott in a new and different way. And help you to explain them to his teachers (again, without divulging the results of any private testing).
I, too, applaud you both for your decision! A few years ago I had the pleasure of teaching adults with developmental disabilities in Winston-Salem (The Enrichment Center). During one of our creative writing classes, I asked my students to write about a challenging time of their lives. Nine out of the 12 wrote about how being labeled “Disabled” had been the hardest to deal with– not the disability. (Their developmental disabilities ranged from high-functioning autism to traumatic brain injuries). These amazing people taught me much about the true meaning of life– Faith. Never once did they complain or see themselves as anything other than students….which they were to me, too.
I also agree that you may want to investigate a gluten free diet regime. Studies have shown a correlation between certain behaviorial traits and gluten intolerance in young children. God Bless your family.
To me, I really think the purpose of a “diagnosis” is to help someone who needs help. I think you alluded to that as well. If your son doesn’t NEED help, then there is no reason to get him labeled, as you said. From your brief description, it certainly seems like he functions just fine and isn’t truly hindered by any “oddities” his personality contains. I would hope no one would want to medicate their child for mild noise sensitivity or OCD behaviors that aren’t debilitating.
Not labeling my child was one of the hardest things I have done in my life. I knew she was difficult but had to face down family censure and disapproval as well as the school system she was attending at the time. I had friends who pressed me to have her labeled ADHD. It is hard to go against what friends, family and teachers advise you to do…but I knew she didn’t need a label. I recommend the book “Raising Your Spirited Child Rev Ed: A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive, Persistent, and Energetic ” to anyone struggling with a special child. I did go through bouts of counselors and pediatric psychologists and finally got a super doc who worked with her and our family to develop behavioral therapy that worked when she was five and six yrs old. She is now an older teen and is a dynamic young lady and the “world is her oyster.”
…HOWEVER
Labeling my other child was one of the hardest things I have had to do in my life. I faced a table of educators and therapists that I knew cared about, and one who I knew loved, my three year old, and wanted to provide her help and yet it still hurt. It hurt to know once I signed that paper that her life would never be without the official “label” even though I don’t have the luxury (?) of her physical appearance not showing her disability. It opened doors that otherwise would have been closed to her. She has had therapy and specialists that our family could not have afforded without drastically changing all our lives. She is thriving in school, thriving socially, and is meeting mental and physical goals we were told at her birth she would never achieve.
Diagnosing my other child for a different issue was kept private yet provided immense help that otherwise may have caused us to lose her (spiritually, mentally, and physically).
bottom line: 1) Every child is special…2) No parenting decision will ever be easy…3) this is a very personal choice and you have to balance the needs of your child with the needs of your whole family while always seeking God’s guidance in your choices…4) you have to listen for God’s voice in guiding your choices
Was this your child who was premature?
(for us it was noise sensitivity, ‘marches to the beat of a different drum’ and ultimately OCD label. I wish I had wisdom about this but I have none.)
yes. (an adult now)
(8 wks premature. But from seeing all my posts in the other topics you might conclude that some obsessiveness runs in the family…)
I have a twelve year with severe autism and he had never ever been on any kind of drug. Actually all I have heard from his doc’s is how ineffective the drugs generally are. They left it to me to choose to try then or not. He has however received ot and other therapies that have made life more pleasant *for him*. As for the label, I don’t mind it because its who he is. Being labeled autistic is only a negative thing if you let it be. I also label him as a loving, smart and uniquely different and special person.
I have several family members who would fit this description. My brother was always a bit weird and did things in a different way. In fact my mother used to say “he walked to the beat of a different drummer”. My son has different ways to do things. Having said that he does have some delays in motor skills and speech. However we have not had him tested for anything beyond speech. He is highly intelligent and gets along well with his peers. So we saw no need to add labels to him. As for my brother interestingly enough he is now married to a special ed teacher.
As a former church weekday preschool developer I applaud you for not tucking your head in the sand. In a small handful of years prior to autism being so publicized, I observed several children who came through our doors with similar tendencies as your son among other behaviors (lights, recitation of movie lines, wandering, to extreme behavior during transition times,…). At home the parents may have not been aware of the idiosynrocies as we were observing the child with others. When we would suggest they look into the possibility of autism, many would run away from it.
I have such fond memories of one little boy, an adopted 4th child of a church staff member. He was keeping us all on our toes during regular church services. At two he was “wandering” off. He could open doors 5-year-olds had trouble with. Scary in a mega church to have a “lost” child. We first attributed it to being a “staff” kid who thinks he owns the place. Then at 3 he could recite every word, line by line, of every Disney movie. Then he entered our weekday program and the observation became clear just how very different he was. Mom delved into allergy testing among hundreds of other grasps at answers to their child’s “problem”. They finally landed on a form of autism that was so mild (sounds like your son) that the special school they found for him had never even dealt with it. Fortunately, this school was perfect for him and through his parents attention to his needs he is thriving as young adult. It makes me concerned for the children who followed him whose parents ran the other way.
Your encouragement to not run the other way, but to jump into your child’s life with all that you have, to embrace where they are and who they are, will bring more life changing results than you can imagine, both in your home and in the lives of others walking the same path. Blessings!
Thank you so much for this beautiful reply.
.
Scott is a wanderer. In another post, I had a snarky commentor criticize me for wearing my 3-year-old in a baby carrier so that I could push Scott in the stroller. I don’t care that they’re 3 & 5. I’ve lost Scott in malls in Chicago, in hotels in NYC, in church, in parks. He just kind of meanders away. Our church family is so wonderful and accepting of it — it’s very often that they have to help me find him.