One of the most frequent questions that Rob and I are asked is simply, "how did you know that something was 'wrong' with Fiver?"
It's a loaded question, and one that I have answered a thousand times in my mind. On one level, a large part of me wants to answer in a way that shows how knowledgeable we are about our son; a way that shows how desperately we love him. I want to say that we knew right away and we were quick to act on what we thought was different about him.
But the truth is that his diagnosis has been an evolution; it has truly taken his whole life for us to get to a point where we feel like we know whe
re his trouble lies and how to help him. And to be completely honest, there are days when I feel like I've only scratched the surface of what needs to be done.
I have said before that SPD is the umbrella term for the disorder, but, more specifically, Fiver has Sensory Based Motor Disorder. Although he displays some of the other classic symptom clusters of SPD, his most severe difficulties lie with stabilizing, planning, and performing series of movements. He has dyspraxia and postural disorder.
Dyspraxia can manifest as:
- gross motor dysfunction (large movements)
- fine motor dysfunction (small movements of the fingers and hands)
- oral-motor dysfunction (movements of the mouth)
- a combination of any of these, with any one area dominating
Fiver displays a combination of all of the above, with a pronounced dysfunction of his fine motor skills. He has always been clumsy and awkward in his movements which is a hallmark of dyspraxic children. He struggles with self care activities that require coordinated movements, i.e.: dressing himself, feeding himself with utensils, buckling his seat belt.
Red Flags of Dyspraxia:
- slow to sit up, roll, crawl, walk, run
- difficulty with motor activities that require more than one step, such as opening a carton and then pouring a glass of milk
- difficulty learning new motor skills, such as riding a tricycle or bicycle
- is clumsy, awkward, and/or accident prone
- often trips or bumps into other people or things
- frequently breaks toys unintentionally
- takes a long time to do tasks that involve a series of directions
- trouble with self care activities that require multiple steps, such as getting dressed
- has trouble playing with manipulatives, such as blocks and beads
- has poor skills in ball activities and other sports
Fiver displays every single behavior listed above. To give you an idea of his delays, he did not sit until he was almost one and he did not take his first steps until he was two.
In addition to dyspraxia, Fiver also has postural disorder. He has congenital hypotonia, which means he has such poor muscle tone that he has difficulty maintaining enough control of his body to meet the demands of a given motor task.
Red Flags of Postural Disorder:
- poor muscle tone and/or seems weak when compared to other children
- often slumps over the desk when writing
- does not automatically move as necessary to complete physical tasks; for example, does not shift to catch a ball thrown to one side
- has difficulty using both hands at the same time; for example, can't use a rolling pin or roll clay between two hands
- has difficulty crossing the middle of his body to complete a task; for example, uses his left hand to write on the left side of paper and uses his right hand to write on right side of paper
- has poor balance and falls over easily, sometimes even when seated
- has poor endurance and tires easily
- does not consistently use his dominant hand
- has difficulty climbing a jungle gym or dangling from a bar with his arms
(Symptom lists from the book Sensational Kids: Help and Hope for Children with Sensory Processing Disorder, by Lucy Jane Miller, Ph.D., OTR)
Again, Fiver displays all of the above symptoms of postural disorder. At almost six years of age, he still has no pronounced hand discrimination. He's not ambidextrous. His brain does not tell him the "default" hand with the better developed skills. He simply uses the hand that is closest to the pencil.
In retrospect, there were always signs that something was awry. Taken singly, these little differences seemed to be manageable quirks, but when we looked at them as a pattern of behavior, we started to see that his development was not normal.
I sometimes wish that we had been able to find these lists of red flag behaviors earlier since it was so astounding to look back on the list and realize that we had checked off every item.
While these lists are by no means exhaustive and they certainly do not take the place of medical advice, they are helpful as a way to gauge whether or not your child may need to be evaluated by a professional.
(Aimee can be found at The Mother Load, where she is usually dressing little bodies, digging through the cabinets for the last pack of fruit snacks, or crying over spilled milk. Because milk is expensive, my friends!)
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