SPD: When senses attack

As you probably know by now, Olivia has sensory processing disorder, or SPD. Sometimes it's also called Sensory Integration Disorder. The thing about SPD is it's not as well known or understood as something like autism. It's a quiet thing that often happens internally. A child's reactions can be low to mild, or sometimes manic depending on the situation. When they hit a mania, it is often seen as a temper tantrum or acting out and can take a long time, if ever, to be diagnosed. We were lucky in that we had already had a child with a disability, so when things with Olivia started to get confusing and curious, I knew exactly who to call and she was diagnosed within a month of her first birthday- a huge thing in the SPD community. We have walked through a lot of milestones with her this year and have gotten over a lot of hangups. For instance, we can now go to the mall, or a store or the school to pick up Elijah without having a major meltdown. It's taken a LOT of work to get it that way, but we've figured out a system to it and learned how to get Olivia comfortable with these situations.

Our biggest hurdle this year has been getting her to be ok with being outside in the playground. Before, this was a cause for major meltdowns and fits of rage. But after conditioning her for several months, making her go once a day, she finally got used to it about 3 months in. Let me tell you what a long 3 months that was.

While most days are mild, lately, we've been going through some tough times with our little 2-year-old. To understand what I am talking about, why all of this is so very hard for Liv, I first have to explain what happens in her brain. Every SPD kid is different and different sensory things are more sensitive than others. For Liv, she has an equalibrium problem, an extreme sensitivity on her feet, and a major aversion to bright outdoor light (i.e. the sun).

When we are born, the neurons in our brain fire and help us do things like feel where we are in space when we close our eyes or help us to understand how to put weight and pressure on our feet when we walk so we know not to mis-step. For Olivia, the neurons in her brain don't fire the same way. They don't always send messages to her to know where she is in space. So if I do something like twirl her around and around, most kids would be a little wobbly if you put them down. Olivia would fall down, get up and then fall down about 7 times before she could get her bearings. She often has problems balancing herself and correcting herself if she becomes wobbly.

The joints in her ankles don't fire enough to her brain to tell her if she's pressing too hard or not enough and it often makes her feel uncomfortable walking, jumping, walking on steps or basically anything that requires her feet. As a result, she avoids anything that comes in contact with her feet. Teaching her to walk took 2 years, she still doesn't jump with both her feet and she will NOT walk on stairs.

The light sensitivity is something I'm still trying to understand. Some days, she can be okay with it, other days she absolutely refuses to go out in it at all. It varies from day to day, situation to situation.

So what does this all mean you ask? It means that when we leave our home, the world is a dangerous and scary place for Olivia; she doesn't feel safe and can often feel out of control. Because she is lacking the ability to coordinate herself and adapt to new environments, we have to go to the same places all the time because they make her feel comfortable. Going to a new or different place, especially if that place involves steps or bright lights or lots of people (she loses her balance) than she gets what we call a "sensory attack".

The thing is, you never know when these attacks will come on, or how she will be able to snap out of it.
One such attack happened on Monday when we took her to the fire station. This is what she looked like 2 minutes before-hand. See? Perfectly happy kid then.... Boom.

When Liv was younger, we avoided as much contact with the outside world as we could. Now that she's 2 years old, we are trying to give her new experiences and new places to learn to feel safe in. So when the opportunity to visit the firehouse came about with our playgroup, we jumped at the chance. Noah was thrilled to pieces to go and easily climbed up and down the truck. Liv handled it well, only fussing every now and then when she had to climb steps or felt unsteady. But we continued on. It wasn't until they brought the firetruck out in the bright california sunshine that I knew something was going to happen. And boy did it. A few minutes out in that light, and Olivia went into hysterics. She screamed louder than I thought humanly possible. She laid down on the ground and rolled all over the place, burried her face and kicked like crazy.

What the world sees: a bratty 2-year-old who is misbehaving and should be disciplined better so she knows how to behave in public.

What I see: a little girl who bravely went to a new place, tried new things, climbed things she was unsure of, was pushed and shoved by lots of little kids, endured a photo facing that bright sun she hates and smiled and then finally..... finally could not take it anymore and didn't know how to control herself.

I'm sure it looks horrible that I allow her to throw a fit like that. But the truth is, she has no idea how else to express herself. We are trying to teach her through methodology how to learn to calm herself down and control her behavior. She is learning how to remove herself from the situation or person and leave. But she is still only 2 years old and sometimes.... you just can't control a 2-year-old.

Lately, when having these kinds of attacks, she spends the next few days being unable to control herself, or sleep or communicate how she is feeling. And on those days, we just try our best to hold her and rock her and keep her away from the scary world. It can sometimes be allienating and is ALWAYS extremely difficult to explain to anyone.

How do we explain how wonderful this little girl is? How funny, and incredibly smart and sharp she is? I don't know. I don't often even know how to explain what is bothering her. Most of the time, I don't really know. But I know she needs a lot of love and therapy and that she is doing so much better than she was and that she is brave, and incredibly strong and a true beauty.

Recently we lost our funding for her Occupational therapy. She graduated from her physical therapy, which was wonderful but it also meant that she lost the only kind of therapy she was getting. Which was pretty discouraging. I do my best to do my own kind of mommy therapy, but there really are only some things that only professionals can do. I'm not done fighting yet, I'm still going to explore every avenue to help my little girl. But this is where we are right now. Having sensory attacks, still sensitive to things but learning and growing and pushing herself all the time. We are proud of our little girl and all the things she has accomplished. We are also so thankful to have spotted this early so we could help her to try and be more successful and able-bodied by the time school starts.

Galatians 6:9 
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.






It's still a journey, but one I will gladly take to help my baby girl. And that's where we are.