Dyspraxia

My child could be the poster child for Dyspraxia. I don't say this as a joke, but with great relief! I had a follow up appointment with the neuropsychologist to discuss Timmy's testing results, and dyspraxia is the diagnosis. I went home and googled it, and can't believe someone else didn't see this sooner. Why didn't I? Maybe because I had never heard of it before, but with the number of symptoms that he has, the neuropsych said it was an easy diagnosis, even before the testing - since he had so much previous testing and his standardized school scores were consistent over the years. So here I am, relieved that we have an answer, and beating myself up just a bit because I feel like he could have, should have, gotten help much sooner than now. I emailed all his teachers yesterday and sent them links to read about the condition (which isn't as rare as you might think). I heard back from a couple of them, and they are supportive. I am as optimistic as I was when he was diagnosed with ADHD - finally.........answers to why my child is so different, and seems to have to work so much harder than the others. This is what I found, the most applicable to Timmy are highlighted:

Dyspraxia
What it is called matters far less to the child than does the understanding and help from those around him/her. Whatever it is called, Developmental Dyspraxia causes disruptions of major proportions in the lives of those whom it afflicts and of the families and world around them.

Definition
Developmental Dyspraxia (also known as Developmental Co-ordination Disorder, and the Clumsy Child Syndrome) is a neurologically based disorder of the processes involved in praxis or the planning of movement to achieve a predetermined idea or purpose, which may affect the acquisition of new skills and the execution of those already learned. More specifically, it is a disorder of praxis, or the process of ideation (forming an idea of using a known movement to achieve a planned purpose), motor planning (planning the action needed to achieve the idea), and execution (carrying out the planned movement). Dyspraxia may affect any or all areas of development - physical, intellectual, emotional, social, language, and sensory - and may impair the normal process of learning, thus is a learning difficulty. It is not a unitary disorder (like measles or chicken pox, where all those affected share a common set of symptoms), and affects each person in different ways at different ages and stages of development, and to different degrees. It is inconsistent, in that it may affect the child one day but not the next - as if sometimes information is 'put away in the wrong drawer' - and it may affect children in different ways at different ages and developmental stages.

It is a hidden handicap as, under normal circumstances, children with Dyspraxia may appear no different from their peers, until new skills are tried or known ones taken out of context, when difficulties may become apparent. In many affected children, Dyspraxia occurs with or as part of other neurological conditions ( in his case, ADHD and Sensory Integration Disorder) so that defining common symptoms may be confusing.
Moves Awkwardly
• constantly bumping into objects and falling
• associated mirror movements, hands flap when running or jumping
Poor Fine Motor Skills
• pencil grip
• use of scissors
• immature drawings
Laterality Still not Established
• problems crossing mid line
• children often referred to speech therapist
Sensitive to Sensory Stimulation
• high levels of noise
Limited Concentration
• tasks often left unfinished"


• • Poor posture and fatigue. Difficulty in standing for a long time as a result of weak muscle tone. Floppy, unstable round the joints. Some people with dyspraxia may have flat feet
• • Poor integration of the two sides of the body. Difficulty with some sports involving jumping and cycling
• • Poor hand-eye co-ordination. Difficulty with team sports especially those which involve catching a ball and batting. Difficulties with driving a car (my chauffeur days are far from over)
• • Lack of rhythm when dancing, doing aerobics
• • Clumsy gait and movement. Difficulty changing direction, stopping and starting actions
• • Exaggerated 'accessory movements' such as flapping arms when running
• • Tendency to fall, trip, bump into things and people
• Fine motor co-ordination skills (small movements):
• • Lack of manual dexterity. Poor at two-handed tasks, causing problems with using cutlery, cleaning, cooking, ironing, craft work, playing musical instruments
• • Poor manipulative skills. Difficulty with typing, handwriting and drawing. May have a poor pen grip, press too hard when writing and have difficulty when writing along a line
• Inadequate grasp. Difficulty using tools and domestic implements, locks and keys
• Difficulty with dressing and grooming activities, such as putting on makeup, shaving, doing hair, fastening clothes and tying shoelaces
Poorly established hand dominance:
• May use either hand for different tasks at different times

Learning, thought and memory:
• Difficulty in planning and organizing thought
• Poor memory, especially short-term memory. May forget and lose things
• Unfocused and erratic. Can be messy and cluttered
• Poor sequencing causes problems with math, reading and spelling and writing reports at work
• Accuracy problems. Difficulty with copying sounds, writing, movements, proofreading
• Difficulty in following instructions, especially more than one at a time
• Difficulty with concentration. May be easily distracted
• May do only one thing at a time properly, though may try to do many things at once
• Slow to finish a task. May daydream and wander about aimlessly
Emotion and behavior:
• Difficulty in listening to people, especially in large groups. Can be tactless, interrupt frequently. Problems with team work
• Slow to adapt to new or unpredictable situations. Sometimes avoids them altogether
• Impulsive. Tendency to be easily frustrated, wanting immediate gratification
• Tendency to be erratic have 'good and bad days'
• Tendency to opt out of things that are too difficult
Emotions as a result of difficulties experienced:
• Tend to get stressed, depressed and anxious easily
• May have difficulty sleeping
• Prone to low self-esteem, emotional outbursts, phobias, fears, obsessions, compulsions and addictive behavior

"The frustration of having the answers in your head but not being able to get them down on paper must be enormous, but for most children all that is needed is an understanding of the problem and extra time in exams, perhaps the assistance of a reader or the use of a computer. Without those, they are at a huge disadvantage."

Side note: Spell check doesn't recognize the word "dyspraxia". There is currently more information and support in the UK - It is my hope that this condition will become better known so that the other "Timmy's" out there can get the help they need, and not have to wait as long as he has for someone to understand.

A Tale of Two Brothers

Mick is taking dance classes once a week. I spent almost 30 minutes in the aisle of the local grocery store last Thursday night, listening to his dance teacher sing his praises. Sunday afternoon, as I was getting my hair cut, his school speech therapist
approached me, and told me about the most recent lesson they had, and about how much he is learning, and how well he is doing. We saw this same teacher one summer Sunday at mass, and she picked him up and gushed over him with tears in her eyes. She later confided to me that at that time, she wasn’t sure if she was going to be reassigned to a different school this year, and that she missed him already! It amazes me to see him at school. He walks down the hallways like he’s the mayor, waving to everyone, and EVERYONE knows who he is! In fact, he gets off the bus from school most days, completely full of himself. I admire his confidence, and he is so darn cute. I will say that the bus monitor was not so charmed this afternoon when he grinned, rubbed his hands together, and then smacked her on the butt. I am hoping that will be an isolated incident.

I just finished dropping Timmy off at school after a second visit to a neuro-psychologist in Springfield, who Timmy's psychiatrist recommended evaluate Timmy. This Dr has concluded that Timmy definitely meets the criteria for development and supplementation of an Individualized Education Plan. He said that not receiving accommodations could be the difference in 300 points when he takes his SATs in HS, and that he clearly is struggling, especially in math and written expression. After multitudes and years’ worth of testing by his schools and various professionals, I am hopeful that he will FINALLY get the help he needs. It just frustrates the heck out of me that it has taken this long for someone to realize that he needs help. He truly does not like school, and while his attitude is better this year than it was last year (before the Zoloft), school is still a huge struggle for him. If I don’t look up his homework and practically stand over him as he does it, it just does not get done. Or it gets lost. Or he forgets the assignment. When he has a project to do, I have to set aside a big chunk of time to help him with it. He’s content doing the very bare minimum to get by. And less. I worry that I am enabling him with all this oversight, but I also know that failing his classes will only make him hate school all the more. And the truth is, I still don't know what his "best" is.


So here I have a child with a visible disability – Down Syndrome. He is loved by all and given the help he needs at school without question. He is accepted exactly the way he is – and guided with love and patience. He is constantly being encouraged to fulfill his potential, and he is HAPPY! Then I have a son who looks like most other 13 year old boys. He has no visible disabilities, and very little self-confidence. School is not a happy place for him – he has trouble making friends, and his teachers have historically been unable to understand “what’s wrong” with him, attributing his poor work to laziness, disinterest, or lack of self discipline. He’s been tested for learning disabilities since he was 8. The results have been consistent, but nothing until now that could be labeled as severe or enough to qualify him for special ed. And so, he has spent so much time worrying about school, and trying to keep up, and wondering why he isn’t “as smart as everyone else”. So much time wasted. Tomorrow, I have an appt with the neuro-psych doc to discuss his findings.

Sometimes I think it’s easier if your disability shows on the outside. Maybe it has to do with expectations, or perceived aptitude. I don’t know. But I have often thought if I could give Timmy ½ of Mick’s extra 21st chromosome, things might be better for him.