Saturday, June 30, 2012

A Little Illumination into SID

I realized something when I was thinking of what to post tonight. 

We started this blog for two reasons, one to chronicle this journey that we're on, and two to help other's who may find themselves on the same road with the wrong map like we did. This is all well and good, but so far we've forgotten one important detail. We haven't actually explained what Sensory Integration Disorder is. 

So I'm going to try to tackle that tonight. And I will put links to any pages I use for resources so that anyone looking can explore for themselves.

Sensory Integration Disorder is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the own body.

So that's the definition, but what does it actually mean for you?

We use our senses to perceive the world around us. Back in Elementary school we all learned about our five senses; taste, touch, sight, smell, and sound. Well we actually don't have five senses, we have eight. 

Visual - interpreting the surrounding environment by sight

Auditory - interpreting sounds, ability to focus on sounds and block others out

Tactile - sense of feeling, how your clothes feel, knowing there's something on your face, etc

Olfactory - identifying what things smell like in your environment

Gustatory - sense of taste, recognizing flavor, intensity, and texture

Vestibular - your sense of balance, where your body is positioned in space

Proprioception - the sense of the relative position of your body (how we can touch our nose with our eyes closed) and the strength we use in movement.

Interoceoption - an internal sense, telling you if you're hungry, feel sick, having to use the restroom

This is how we go about our daily lives, all these senses working together often without our even noticing. We don't realize that our body knows our link to gravity, unless we use an elevator and feel that small "flip". We don't notice our vestibular sense until it gets out of whack for some reason and we have that unpleasant feeling of vertigo. 

We normally experience some form of sensory interruption at points in our life. Not long lasting, not dangerous. 

For our kids, this isn't a quick interruption. This is their life. 

An apt description can be found in the book "The Challenging Child"  By Stanley Greenspan.

"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."

Can you begin to imagine living like that? Of course our kids are going to have trouble focusing. Of course they're going to seem like they are out of control behaviorally. 

Another of my favorite explanations can be found here. Please check out this site as it has a lot of good information, but I'll give you the gist.

  • You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.

  • You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair and you fell off 3 times during this training.

  • Your clothes felt like they were made of fiberglass.

  • You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.

  • Every time you tried to write with your pencil, it broke because you pushed too hard.

  • The different smells in this room made you utterly nauseous.

  • The humming of the lights sounded louder than my voice.

  • You couldn't focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.

  • The lights are so bright you have to squint, then you get a pounding headache half way through the presentation

  • Every time someone touches you, it feels like they are rubbing sandpaper on your skin.

  • You could only sit here for 15 minutes and then you had to take a run around the building or do 20 jumping jacks so you could sit for another 10 minutes before your muscles felt like they were going to jump out of your skin.

  • People's whispers sounded like they were yelling.

  • The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.

  • You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.

  • This is just everyday life for a child with Sensory Integration Disorder. And when I learned about it, it was like an epiphany. A huge "That explains SO much" moment. This was important, because until then I just didn't understand my son's behavior. I couldn't understand why he could not sit still. Why he was constantly knocking things over, or bumping into people. Why he yelled or whispered inappropriately all the time. 

    I was so frustrated, why wouldn't he just pay attention! How could he not know he had dirt all over his face or hands. How could he not know he had to go to the bathroom until it was almost too late. I'd never heard of such a thing. He was just being lazy, he was just being inattentive, he just needed to knock it off and be more responsible.

    Of course, while knowing the why's did help. The how do we fix it's are still a work in progress. There is no band aid or medication to make it go away. We have a long road ahead of us and we will keep sharing our story. To give you a glimpse into living with and parenting a child with this disorder. 

    What I've written here is in no way all there is to say about SID/SPD. Please explore these sites and trust your gut, you know if something isn't right with your baby and if it's Sensory Integration, the earlier the intervention the better. 

    Quote of the Day:
    "Did you seriously just lick that?" -overheard and decided I honestly didn't want to know.

    Friday, June 29, 2012

    Brickyard Road

    Our goal is to share our story. The ups and downs. The good and bad. Non sugarcoated truth. It's my personal hope that we can help even one person, who feels like they've done everything they can and nothing is getting any better.

    Only days after Melodie's intake appointment for SI Therapy she had convinced other children to twist her arm and break it.( THANK YOU legoMama for catching that one.) She wanted a cast so bad she was willing to suffer through a summer with a broken arm. That's says a lot considering Melodie's favorite place is in the water. 

    Couple things about Melodie I may have forgotten to mention. Her safe place is water. Bath, shower, pool, puddle, it really doesn't matter. She also associates her world in color. Remembers playgrounds by the color of the play equipment and refers to them by such. Remembers people by their favorite color, or the color of their house or car. That's just the way her brain likes things to be. 

    I get a call, that Melodie wants a purple ( her all time favorite color) cast so bad she is trying to break her arm....OI! are you kidding me? I will admit I had a hard time with it the more I thought about it. I can understand wanting a purple cast. It's a great color. But willing to purposely break your OWN arm to get one...I cried a little. What is going on in that brain of hers. 

    I remembered we had SI therapy and that maybe Katie could help, at this point I didn't care if she knew all the answers or not. She knew more than me, and for the first time it all made perfect sense. 

    So we started her "menu" my co-author and I took two days at my house and gave it a go. Things seemed to go so smooth. Now we've had a couple days on our own, and we're learning. Musical Chores is SUPER AWESOME. One of the activities listed was stop and go games. So we put it to music, you clean when the music plays , you FREEZE when it stops. It's fun and very productive. 

    Joint Compression, she just loves it. 

    We have crab walk races, find the skittle in the bag of rice, legos, she uses her squishy ball when she reads or has to listen to instructions. We play the same music every night (Zen Garden) for bed time. We start every day with a warm face wash. We have found that she likes to have a heavy stuffy on top of her when she sleeps, and likes to be rolled tightly in a blanket.

    I will say that last night was not a good night, she couldn't stay asleep, and even when I was laying right next to her she would wake up and yell for me. The lack of sleep is where I really have a hard time. It affects everyone in the house. Including Lilly. 

    Melodie was very good while shopping today. Daddy was home, and we all went to the mall. This was a pretty big deal considering the last time I took Melodie to the mall we had to leave because she was too nervous. She picked out some new clothes and talked daddy into a book and a bracelet. Daddy's kind of a big softy though. 

    Things are always a little different when he is home. He is a truck driver and currently gone 4-5 days, home for 2. So we adapt, because well, we don't really have another choice. Some days we wish Daddy was home more, but we are certainly thankful for the sacrifices he makes to provide for us. This allows us to home school ( ALE style), it allows Melodie the things she needs, and Lilly to spend her days with Me and Melodie. 

    There are days I'd like to sell them to the circus, even told Melodie that's why she took gymnastics. But in all honesty, I wouldn't trade it for the world. I have kanji symbols on my forearms, Strength and Courage, those two words have gotten me though the absolute darkest of times. But that's a whole other story. My point being, what doesn't kill you makes you stronger. I am a stronger mother now than I was a year ago, and I am determined to fight for my kid, and help others. 

    Thursday, June 28, 2012

    In His Own Time, Not Mine.

    Kaiden's therapist gave us a list of activities specific to his test scores that we should pick from to make a menu. The theory being, if we continually feed the need for sensory input we will avoid the seeking behaviors. Much like how eating a steady diet avoids hunger. 

    As thrilled as I am about finding the correct diagnosis, I'm overwhelmed by what needs to be done. I knew going in that it wasn't going to be a simple, here fix my kid, scenario. But I think that somewhere deep inside, in that place that parents don't want to admit exists, I was kind of hoping it would be. 

    So I sat with my list of activities and my menu and filled it out. That part, was easy.

    Now the difficulty lies in trying to incorporate these into our every day life. Five kids, four homeschoolers, two dogs, two cats, and various other insanity seems to block the best intentions. I am not ashamed to admit that today, we did not do all of our sensory diet. I am however proud to admit that we did do our evening routine. 

    A typical evening/bedtime routine would comprise itself of calming activity. My youngers get the, let's lay quietly in bed and look at a book, listen to music, and relax, treatment. 

    Kaiden's typical (now) bedtime routine is as follows:

    Football Drills - Throwing Postures, Up Downs, Suicides
    Wrestling - 15 minutes of throw down with his older cousin
    Joint Decompression - Gently pushing/pulling the joints from shoulder to toes

    Then we are ready for bed. 

    I know we can do this, we have to do this. I will do everything possible to help my son be at peace with himself. 

    I tried to work on his page earlier, The Evolution of a Kaiden. I found it a lot more difficult than expected. Sifting through all of his past, everything he and we have gone through. I feel as though a part of his life was robbed by this disorder. Like we were robbed of that time with him. The constant fight just to keep him level. Like all we ever did was correct him. 

    I can't get that time back for him, or for us. I can't make his bad times go away. So I'm going to try and focus on what I can do. I can make it better from here on out. I can help him now. And I can watch as he becomes he person I know he can be. I can let my pride shine through him. Because if there is one thing I am, it is proud of that boy. He has overcome so much, even before we were able to get him help. 

    So for now, I will take a deep breath. I will realize that nothing is instant. It will take time and practice to get this schedule correct. We will be flexible. I will be flexible. I will leave my worries in God's hands and know that eventually we will get there. I don't want to reach the end and realize I didn't even enjoy the scenery on the ride. 

    Quote of the Day:
    "Mommy! I got a rhyme! Nookie Cookie, that rhymes right?"

    Wednesday, June 27, 2012

    How we got here, and Who led the way.

    Eight years ago my co-author made the off hand comment; "He is so adorable, if I have kids I hope they're just like yours."

    This phrase has somehow become a reality. 

    Both of our first borns, who are three years apart, are one person in two bodies. Male and Female, Yin to well Yin, actually.

    Kaiden is eight, he has Sensory Integration Disorder. His test shows that while he does not have Autism, he has pretty severe integration issues.

    Melodie is five, she has Sensory Integration Disorder. Her test shows that while she is not Autistic either, she also has pretty severe integration issues.

    I'd like to point out that when comparing their tests, there was only a one to two point difference in scores. These tests were given on different days, in different situations. 

    One person, Two bodies. Down to even their facial expressions when having one of their SID moments.

    Continuing this "curse" of ours, we both had second borns. What can I say, we're brave people I suppose. 

    These are our control group for lack of a better term. They are the "normal" children. Again they were three years apart. Again they are the same people in two bodies. Both hitting the same milestones, both having the same quirks and personalities. 

    Jaelyn is five. She is a "normal" child. She believes she is a princess and is fantastic at getting people to do what she wants.

    Lilly is two. She is a "normal" child. She also believes she is a princess and follows Jaelyn's footsteps on how to get what she wants as well.

    Personally, I hate the word normal. But I use it here to illustrate what is considered the norm behavior. As much as the word may bother me, there has to be some baseline to find out how far a child deviates and how to help them. We don't think of our kids as broken. They both have different strengths, where something is lacking, they've made up for it in other area's. 

    It has been a struggle to get here, we've been told ADHD, Oppositional Defiant Disorder, Bipolar, Unspecified Mood Disorder, Dyslexia, Aspergers. 

    We've been told:

    They will learn how to cope, this is a life long ordeal, they'll have to learn to live with it, they'll have to figure out how to work within their means.

    And then we met a woman who told us:  

    "What I'm going to say will change your life." It did.

    It brought us the diagnosis of Sensory Integration Disorder. It brought us to another woman, named Katie, who finally said those four little words:

    "I can help them."  

    This is just an introduction to the members of our circus. Kaiden and Melodie both have their own unique story to tell so we've created a page for each of them. Welcome to the madness, we'll be blogging about our day to day struggles, successes, and our adventures in therapy and A.L.E. schooling. Feel free to tell us your stories.

    Quote of the day:
    " If you're close enough to LICK someone, you're close enough to stop SHOUTING. We're not deaf. Yet. We may be soon if you don't stop."