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.

A thought......

I think far worse than the inability to handle the truth, is the inability to recognize the truth.

To New Orleans

My husband and oldest daughter are on their way to New Orleans, where she will be working for Habitat for Humanity. She has been home for just a little under one month, since graduating from her year with Americorps NCCC. Her new job will be for 10-12 months, and she will earn an additional education award, finishing with almost $10,000. for college. We are so proud of her! Mostly because she is taking the initiative, the "road less traveled" and doing something good for others. It is demanding work, the pay is minimal, but those things don't matter much when you are 19 and idealistic! She is getting a clearer idea of what she wants to pursue afterwards, and it is all good.

When we were discussing her trip to her new job, my husband and I agreed that one of us should accompany her down there. We bought her a used car, and she is still a relatively new driver, and it is 17 hours away. I loved the idea of driving with her, and having that time alone with just her (a rarity in a big family!). She has matured so much this year, and it is exciting to hear about her adventures, and to have some insight into how she views the world. It is still hard to believe that she is on her own. Wasn't she just a curly headed 2 year old who knew all the "Bob" jokes? When my husband was able to coordinate his schedule so that he would have the next two days off, he said that he would be the one driving with her. When I told Katie this, she said, "Why doesn't he stay home with the kids so you can come? Just tell him you want to come!" I explained to her that he is the better choice in case there was a problem with the car, and that she'd be safer with him, too. I also knew that he would be out of his mind worrying about our safety if he was staying at home. She told me that nothing would happen to us, and that I should just "Tell him not to worry." I was flattered that she wanted me to accompany her, especially since she has a better relationship with him than she does with me, but I told her that he knows what is best, and that in a marriage, sometimes you have to concede to your spouse, even if you don't necessarily agree. She said something to the effect of, " That won't happen in any marriage I'm in!" Which made me laugh.

One of the things that I love best about my husband is that he puts his family first. And he takes care of his girls (including me). I don't mean to imply that we can't take care of ourselves, or that we are weak helpless females. Just that he feels and acts on his responsibilty to be the head of the house, the protector and defender of his family. So much like my dad was that way. I have known him for 25 years now. He is the most honorable man I know. I have never questioned his devotion to me or our marriage or our family. And when you have that, it's no big sacrifice to let your spouse take the lead, or have the last word. Trying to explain that to a 19 year old is challenging. My hope is that one day, she and my other girls will find men who are even 1/2 as devoted as their dad is to me, and to us. If they are that lucky, they will be happy!

Just DON'T Do It!

I have teenagers. Two boys and two girls. I try to keep a regular, open dialog with them about delicate matters. Most of the time, they don't say much, and I talk on and on and on. I am pretty sure what they hear is "Sex.......blah blah blah blah blah." It is my hope that some of the words I say are being filed away in the back of their minds for future reference. We live in a society which promotes promiscuity, and it is hard to have the TV on without dozens of sexual references thrown at you during the course of a single "family" show. Commercials are no better. I sometimes laugh when I imagine what my father's reaction would be to all the viagra type commercials that are on, if he were still alive. No one is shocked by any of this anymore! I know why my friends don't have cable! I would cancel our cable this minute if I could get my husband to agree. And it isn't so much that I want to shelter my kids from the real world, I just don't want them to grow up accepting the world's view of sexuality. And when it's shoved in your face at every opportunity, it is hard to ignore.

The way I try to explain it to my kids is that sexuality is all a huge part of God's grand plan. Those who don't believe in God would surely disagree, but to me, it could not be more obvious. When sex is saved for a marital relationship, it is a wonderful, beautiful, grace-giving act. There is a reason that we are supposed to "save ourselves" for marriage. It is the greatest gift you can give to someone else, an intimacy that there is no substitute for. When you take God out of the picture, often times, sex is just recreation and exercise. It is so easy to feel used and abused by someone who is just looking to score. So much heartache and ugliness can come from sex outside of marriage. Sexually transmitted diseases and unplanned pregnancy are not the least of them. I tell my kids that every child deserves to have a mother and father who are committed to him, and committed to each other. Today, with probably more than 50% of children being born out of wedlock, that committment is not present. Then there are single parents, who may or may not be able to support a child. It is always the child who suffers.

I say this like I have all the answers. I surely do not! It is not enough to tell your kids, "Don't have sex!" They need to be watched like hawks! And not given the opportunity to be in a position where they might lose control. Group dating is always a good idea! And so is open dialog. So is knowing your kids friends and making them feel comfortable in your home, so they will want to be there instead of off in a car somewhere. And, I personally hate the mindset that "They are going to do it anyhow, so you need to provide them with birth control." As Catholics, we believe that birth control is another way of keeping God out of sex - preventing the life that might result from an act designed by Him to create life. If you are married, presumably you are committed to one another, and should be committed to any gifts that come from the love you share with your spouse. Again, I know there are those who will disagree. I also know I am fortunate to have a husband who shares my views. We are certainly swimming against the tide on this one! I have many moments when I think it would be easier to swim with the tide. But, then I wouldn't be so richly blessed. I am not so naive to think that my own children will not struggle with these issues. I hope that when they do, they will remember some of the things I've tried to share with them. A phrase I have said to each of them more than once is "I will help you up when you fall, but I will not hold your hand when you jump." I won't tell them to do or not to do one thing, but then support them if they choose to do it anyhow. And, I will pray for them to always have the wisdom to choose wisely, and for me to guide them with love.

Just Do It!

Three little words. Just Do It. I have so many ideas running around inside my head for things I would like to acomplish personally, and projects around the house. None of these things are unattainable, but I realized that one of my problems is that I feel if I can't do something perfectly, I am much less likely to attempt it at all. Oh, I'll buy the supplies and read the instructions, or I'll read the magazines, watch the videos and buy the cute workout clothes, but when it comes down to actually taking steps towards a goal, I hesitate, or I stall out halfway through. Which is frustrating, (more so for those who live with me, I'm sure) but I have no one to blame but myself! I decorated the little boys' room last year, and am pleased with the results. At the same time, I bought supplies and hatched a plan for Megan and Colleen's room : a garden/treehouse theme. The other day, my neighbor dropped off a dresser which she got from someone who was moving. It had already been stripped of paint, but the owner abandoned the project, and just wanted the dresser gone. It was the perfect size to replace Colleen's dresser, so I decided to make it a project for Colleen and me to do together. It was fun! We covered the picnic table on the deck with old sheets, and set to work. I bought a sheet of plywood to fit the back of the dresser, and new knobs. Colleen helped to nail the back on, and we painted it together. Part of me really didn't want her to paint, since she's a novice, and she has a tendency to overload her brush and slap it on. But when I saw how much fun she was having, I realized that it is her dresser, and it didn't matter if it wasn't perfect. And, I am not a perfect painter either! We'll pressure wash the extra paint of the deck later..........the important thing was, we were making progress towards the girls' room, finally! And we were having fun doing something together. It was kind of a lightbulb moment for me. FLYLADY says, "Housework done imperfectly still blesses your family". This can apply to so many areas of my life. I am using this revelation to tackle some things I've been putting off or haven't finished yet. Yes, the trim around the door would look best if the paint was stripped and sanded first, but it will still look better with another coat of paint. Will anyone besides me notice that it isn't perfectly smooth? Will anyone care? On a personal note, I cannot run a mile, but I can walk 2 miles in 20 minutes. So I am headed to the track with the kids, bearing in mind that exercise can be fun, family time, and everything I do from this point on is progress! Perfection is over-rated and maybe impossible, but progress is satisfying!

Reunion!

I just got an invite to my 25 year high school reunion. In October. 4 months to get into shape. Can I do it? I think I can!