Thursday, June 2, 2011

Bringing Up Baylor

I've always heard boys are tougher to raise than girls in the early years. Boys are typically more rambunctious, into more and mischievous. I've witnessed this first hand when Baylor and I get together with other friends that have girls. Most girls are content to sit in one spot for more than 5 minutes at a time, playing with their toys or dolls while my son runs rampant around the house jumping, stomping and crashing into things. I knew raising Baylor would be a little bit more challenging anyways knowing how his father (Scott) was growing up. My M.I.L. has told me so many stories of Scott's mischievous, destructive behavior that I knew I was in for a treat with my own son, thanks to genetics.

Baylor has been receiving various therapies through Louisiana state for almost a year now. Still concerned with his slow progress, I took Baylor to see a pediatric neurologist in April. Though the neurologist feels Baylor does not have Autism, she will be able to tell more about him when he starts talking better. Right now, his speech is on the level of a one year old and hopefully when she sees him again in October, she will be able to give us more answers. She does see Baylor's sensory and proprioceptive issues which coincide with what his therapists believe he has. Baylor's OT believes he has Dyspraxia (with proprioceptive issues) and after Scott and I have done much research on the internet and in books, we strongly believe this is what he has though the neurologist won't give us the official diagnosis quite yet.
So what is Dyspraxia? It's the way in which the brain sends info through the nervous system to the rest of the body; the messages carried by the nerves are mixed up and unclear. There is no known cause but it seems the nerves are slower to develop in children with Dyspraxia and parts of the brain fail to mature properly in a timely manner. It comes with numerous issues, one being oromotor dysfunction which is the coordination of muscle movement to pronounce words or to even eat properly (hence the speech and eating problems he is having). At one time is was called the "Clumsy Child Syndrome" because children with Dyspraxia have poor coordination, have a poor proprioceptive system (clumsy) and need a clear definition of space. They also find it hard to plan what to do, and how to do it. Other symptoms of Dyspraxia are:

Strong dislike for the feel and texture of certain foods in their mouth/Baylor hoads alot of his foods and chokes easily.

Tactile defensive/ Baylor does not like any food on or around his mouth or on his hands.

Repetitive behaviors/ Baylor will hit himself in the head when he's frustrated. He likes to open and shut doors consistently. He is also consistently rubbing his diaper in between his fingers, mainly when he's tired.

High levels of motor activity: constantly moving arms and legs/ Baylor can't even stop moving when he sleeps, he seems to kick his legs alot and needs the touch of something or someone.

Lack of concentration (less than 2 mins. at a time on one thing)/ In Baylor's case his attention span is maybe all of 30 seconds on one thing.

Bumps into objects, walls, trips easily, clumsy/ Baylor is constantly running into the wall or falling.

No sense of danger/ Constantly jumping on the beds, into the pool, jumping off high objects.

Sensitive to sensory stimulation/ Baylor cannot stand for his pant legs or arms of his shirt to roll up. He will pull them down every time.

Sometimes undersensitive to pain/Baylor got into ants one day but it took him forever to react to the bites and probably only because I freaked out!

When we started reading and gathering all this information on dyspraxia, we started adding up all of Baylor's little "ticks" and realized they weren't just ticks. Everything he did fell under the symptoms of dyspraxia. What caught my attention the most was the "clumsy child syndrome" part. It always seemed Baylor was falling or running into stuff more so than most kids. He will fall hard or trip over something and get back up and keep on going. He's not a crash and burn kid, he's a crash, brush it off and keep going kid. We also did more research on "proprioceptive dysfunction" and found alot of similarities of the dyspraxia:

Be the loud ones, rough ones, crashers, movers, shakers hard, push too hard,, runners, jumpers, and bouncers (i.e. an insatiable bundle of energy!)

Walk too hard, push too hard, bang too hard, write too hard, play with objects too hard, etc.

Play too rough (often hurting himself or others), jump off of or crash into ANYTHING .

He can frequently bump into objects and people accidentally.
Trip and fall often.
Like small/confined spaces (tents and tunnels).

Proprioceptive children crave sensory stimulation, deep pressure and touch. That's why Baylor has a hard time knowing how to apply pressure correctly when he does something. For instance, when he runs to me when I pick him up, he never slows down, he hits me with full force because his brain can't tell his body when or how to stop in time. Also, instead of easy, gentle hugs, I get neck gripping, wrap around hugs. Believe me, I don't mind this at all though! Stanley Greenspan of the book "The Challenging Child" described proprioceptive dysfunction as this:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

Hearing this hurts my heart for Baylor. Though I know he's not in any pain and that he probably is to young to understand what is going on with his body, I hate knowing he pretty much has limited control of his own body and movements.

And another thing... Where do we go from here? What does this all mean?

We are all adjusting to Baylor's lifestyle. We have to keep Baylor active daily with trips to the swimming pool, afternoons on the slip n slide, giving him access to things he can safely climb, letting him jump on the bed and letting him test his boundries, more so than I would like him too. I'm having to ease up and let loose some. We can't clothes shop or sit through puppet shows: been there, done that, didn't go well. Fortunately the movies fascinate him and he can get through 95% of one without him reeking havoc upon everyone. Other than that, it has to be an activity with constant motion and sensory stimulation. Baylor sometimes wears a weight belt while he plays. This helps provide him with pressure and helps to keep him a little calmer. After he gets out all of his energy and we take the weight belt off, I can sit him down and either read with him or complete a puzzle. The use of the weight belt has seemed to help get out alot of his built up energy and helps him to focus better. We've also been using massages as a deep pressure stimulation for Baylor. The child literally melts when he gets one and I've found he is calmer and more focused after receiving, similar to how he is after the weight belt comes off.
Though Baylor has a speech delay, he is very smart. He has learned to communicate his wants by pointing, grunting, doing sign language or going and getting what he needs. He can speak some words: Mama, MawMaw, baby, eye, truck are the consistent ones and a few more here and there. He is also putting 2 and 3 words together now, like: Hey mom, I did it and there it is. He can follow directions very well, help dress himself and point to body parts. In this past year I have seen a difference in him, a slow one but that's better than none. When Baylor turns 3, he will transition out of Early Steps and into the Livingston Parish School system. Hopefully in August, they will come to assess him for his needs and place him in the school system early. They will pretty much pick up where Early Steps will leave off and this time it will be in a structured environment with other children his age. They may only take him 1 day a week or 5 but we are also hopefully enrolling him in pre-school this August, 2 days a week to help him along. His therapists feel he will benefit alot from a structured environment and having the social interaction with other children.
As of right now, there is really no cure for Dsypraxia. With the help of OT, Speech Therapy and his Special Instructor, Baylor will grow out of his "quirkiness" or worst case scenario, he learns to adjust to live with it. There is alot of frustration on his end because we can't understand him, stubbornness and temper tantrums. This also causes me to get over whelmed and frustrated myself at times. I'm sure every Mom has those moments too. Baylor is just SO active: he is non stop, all day long. If you were to spend a day with him, you would know that I am not exaggerating. When we have days like that, I try to take a deep breath and remember what's going on with my kiddo and also remember that there are families and children out there with bigger issues. I have to remember that not only am I raising a BOY, but a boy multiplied by 10 to the 10th power! Though there are the rough, frustrating times and the overly active days, there are plenty of wonderful days and times too. We try to venture out every chance we get and I am always trying to find new things for him to do. We have such a great time and he brings a smile to my face so often during the day, that I would never be able to keep count of them. I wouldn't trade Baylor for the world and if I had the choice to do it all over again knowing what it would be like, I would still choose to have him in my life. He is the beat of my heart and the air I breath into my lungs. He is the reason I get up every morning and is the purpose of my life on this earth. The love that I share with my boy is so much more than can ever be explained in words.

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