How Swim Therapy Changed Our Lives

 Olivia has Sensory Processing Disorder, or SPD which has affected a lot of her development. (For more information on what SPD is, click here.)

 Last summer, we were in a very precarious situation. You see, the state offers a lot of occupational and physical therapy to children under the age of 3 but in order to qualify for that therapy, you have to be at a certain development delay. At 2 1/2, she had many delays, but not enough for her to be getting consistent therapy. While our Physical therapist continued with her, all other options began to close for us. Because of the nature of SPD, it isn't something that's readily recognized like autism or cerebral palsy and isn't given a lot of ground when it comes to helping children. Frustrated with the system and desperate for my little girl to still get the help she needed, I turned to the internet.

I started to read blogs and see articles about the tremendous strides that swim therapy, or water therapy, was having on children with sensory issues. Because of the weight of the water on the body, it affected how children would understand their body in space and allow them to build muscles and skills they wouldn't otherwise be able to do outside of water.

I was encouraged by the amount of people talking about the results of this therapy and began to search for water therapists in our area. After a few calls, odd looks and head scratches, I realized that this was unchartered territory and that if I was going to do swim therapy with her, that I would have to learn how to do it on my own.

So I went rogue. I researched different excercises to do with her, I consulted her therapists, and I tried it out once to see how affective it really was. I was AMAZED at how one session in the pool changed her attitude, stamina and skills. I knew we had hit an SPD goldmine. With a donation from an incredible friend, we were able to gain access to an indoor therapy pool all year round.

When we started: Olivia was very clingy to me, could barely walk, couldn't jump, climb stairs or use her tummy muscles very well. She was wobbly, uncoordinated and afraid to try new things.

But slowly, over time I began to see her develop skills inside of the water, where it felt safe and familiar. In the pool she started jumping , and diving underneath. Pretty soon you could see my two-year-old daughter holding her breath and submersing under the water and swimming. She was a fish. The people around the pool were as astonished as I was. She was in control, and in her element. The feeling of going underwater not only allowed Olivia to understand where her body was in space, but the pressure of that contact allowed her nerves to get relief, sending endorphins to her little brain.

I started to see muscle development and confidence in her. Pretty soon we started working on behavior modifications in the water. When she was having a particularly bad week with over stimulation or her nerve endings were tingling, I would take her to the pool and work on those behaviors that were a challenge. It's like she was a different person. She was alert, and willing to try new things; she was happy.

In the year since we began swim therapy, Olivia can now climb stairs, walk properly, twirl, and run- all things we take for granted but were unattainable to her before. We still have things that are problem areas, but seeing the transformation not only in skills but in attitude has been incredible.

When I started this whole search to help Olivia build the skills she needed, I had no idea the endeavor I would be taking on. But it just proves that sometimes...you have to go rogue to get things done. I'm so glad she found something that's all hers. To see Olivia swim is to truly see inspiration.

How to Take a Sensory Kid to Disneyland

Olivia turned 3 this month and we felt like it was time to reward all of her hard work with a trip to the castle that she daily talks about. We had the chance to take our other kids a couple of times, but we always left Liv at home due to her maturity but also her extreme sensory issues that made it seem impossible to take her.

But as she got older and became obsessed with the Disney princesses and that big beautiful Disneyland castle, we started to think about how unfair it was to withhold that experience from her just because it would be "hard" to do. Yes, it would be challenging, exhausting, sometimes frustrating and, at times, unnerving. But when you get down to the nitty gritty of it, she still deserves all the life experiences and magical moments that every other kid deserves. And so, we set out planning our daughter's introduction to the land we love so much.

Plan ahead
It's important when dealing with sensory issues, to plan ahead. The first thing we decided was that we wanted to take only her. All the other kids stayed home so we could put all our energy and focus on Olivia. She could set the pace for the day, and if she had a bad day, it wouldn't affect everyone else. We planned the 8 hour drive to L.A. around her schedule and needs. Providing many snacks, comfortable clothes, protective sun shields and plenty of entertainment for her as well as many stops so she could run around. It worked out really well and when we felt like she might start having "a moment", we would play her favorite music that was a cue to her to calm down. We all made it there and back in one piece.

Transportation

We also decided to take a stroller. While most people do this regardless, this was a big decision for us as we had never taken a stroller to Disneyland. But we felt like we needed to be able to create a safe place for her and a place where she could rest as she became fatigued. While we originally planned for those things, the stroller ended up being so much more. It ended up being the place where we would put her in a time out. When she would become overwhelmed or inconsolable, we would put her in the stroller and put her comfort blanket over the top of it to create a quiet, dark time out environment to allow her to calm down in her own space, while also giving her time to change her attitude.

We chose a hotel that was a little bit further away and went with taking the bus to and from the resort. $24 for the 3 of us for 3 days wasn't half bad and the payoff of not having to walk the 3 miles back was priceless. Particularily because as night hit, the moodiness can sometimes worsen, and it's nice to be able to make a quick getaway. Olivia also enjoyed the stimulation that the bus ride provided and we used it as a signal to her to prepare herself for the park.

Clothing 

Because our Olivia was into princesses, we wanted her to be able to dress special for the occasion but she also has major sensory issues to clothes, so we worked around that by offering a wide variety of outfits and layers. She loved Ariel, so instead of choosing an itchy Ariel costume, my mom made her a special Ariel tutu that she could take on and off as she became uncomfortable . I gave her many sock and shoe options as well as comfortable layers like leggings and cardigans that we could easily add or take off as the day went on. She really loves the tiara, but I made sure to make it comfortable and light. We also included sunglasses which helped BIGTIME with her light sensitivity. Mostly, it was me that had to learn to be flexible. I brought a big fluffy princess dress that I wanted her to wear so badly, but when she tried it on, it didn't feel right so I immediately let it go and allowed her to choose what clothes made her comfortable. WAY LESS of a battle, and she was a much happier girl because of it.

 

ACTIVITIES

We tried to plan out a few things that we knew she would want to do and see at the park each day in order to gain momentum in her experience. And we did our best to do those things first, while she still had patience and energy. Because she loved the princesses, we knew meeting them would be a priority. While she wasn't keen on the line, we managed to distract her by keeping her stocked with snacks and fun things like chapstick and jewelry to play with while waiting. I'm not going to say that all line experiences were amazing, some were downright difficult, but we did our best to choose the things with the shortest lines and to always make sure that she was the one who wanted to do each activity. If she chose, it was much easier for her to wait in line. And when we would try to do a ride and the line was too long, or she wasn't feeling it, we let go of the idea and tried something different. The key is flexibility and not putting too many unrealistic expectations on the trip.

We also tried to do a lot of shows and fireworks as those things didn't require standing in line and you could sit down and take breaks while doing them. This allowed for her to calm down and for all of us to slow down and enjoy things a bit better.

MELTDOWNS

As much as we all like to pretend like the 300 pound Gorilla isn't in the room, let's face it... there will be meltdowns. The key is, to not let them take you by surprise. Plan ahead. For us, this meant taking frequent breaks. But where do you take breaks for sensory kids? We find that the pavillion at the back of California Adventure by Goofy's Sky School is an EXCELLENT place for lunch. Because that park is so very hot it's difficult to find shade and quiet. But this place has covered and totally shaded places to eat and it's not overly populated because, not a lot of people know about it. It's next to a wide variety of restaurants and bathrooms. Heck, there's even a plug in for your phone by the bathroom. It's a great place for a break. It does have lots of live music shows though, so if your child has sensitivity to noise, I would plan on bringing ear plugs. But if your kid has that sensitivity, that is probably something you do all the time anyways. We chose to pack our breakfasts and lunches and snacks. Obviously, it's cheaper. It allows for you not to have to stand in yet another line and pay a ridiculous price for food your child may or may not eat. But it's also a chance for you to provide foods your child is familiar with. Olivia has a sensitivity to textures in food and will hardly touch anything she's not familiar with. So we made her a sandwhich and snacks as if she was sitting at home. When that meltdown hit, the familiarity of the food allowed her to calm down and focus on eating. She also enjoyed the familiar snacks we packed throughout the day as needed.

We brought her security blanket which helped considerably as well. Obviously it kept her warm, but it also was present during rides that she was a little unsure of and worked like a charm (and got pretty dirty). In hindsight, a backup blanket might have been a good idea.

BOTTOM LINE: There are only so many things we can do to keep our sensory kids from outbursts. They will happen. People will stare, and possibly whisper and pass judgement on your kid, on your parenting and on how annoying the whole situation is. You gotta have tough skin. But you also can remember that these are all people you will never see again. Besides, you're not here for them, you're here for your child, and to provide them with as much happiness, love and imagination as you can. Those are the people of the world that will never understand.

Experience= Priceless

For all the planning, overpacking, and worrying, for your child, the experience really is invaluable. In our family, we have a saying...

We Do Hard  Things

We don't do things because they're easy, but because they're worth it. And this trip, was so so so worth it.

 

How to be genuine or, what I did this summer

I've struggled for a while with what to write about on my blogs. How many times can my readers really listen to an emotional spill about my children with special needs? How many craft projects are really that interesting? I worry about what strangers will think of my blogs, or what magazines and publishers will think as they stop by based on proposals I send out. Do I talk less about my kids and life as a mom? Isn't that unprofessional?

These questions are dizzying and quite frankly, keep me from writing anything at all. Here is one fact you need to know about me that's more important than any other fact you will ever know and that is: I'm GENUINE. I can't stand fake. Fake smiles, pretending, trying to be something I'm not. I really despise it and am quite bad at it. So, I've decided to make a decision to go with the one thing that I really know about myself and to be genuine. That being said, here is my summer so far:

*Went to Disneyland which was awesome. My boys loved Carsland (ok so did I) and ended I up buying a season's pass (that was so cheap after our stay there I couldn't say no). Now I'm just a girl, saving up for her next adventure. I love being able to have adventures to look forward to. So on really bad days, I can close my eyes and think about what ride I'm going to ride next, or what Disneyland looks like at Christmastime. It gets me through those really hard days. And is somewhat of an escape for me when the challenges of motherhood can get the best of me.

 

*Discovered the library again. After a pretty scary threat that I received from a homeless man last 

 summer, I've been nervous to take my kids near the library. But they just love to read and play so I developed a systematic approach. I circle the place first and make sure there's no violence or scary people and then I take my ducklings in. They love it!

*Did our best to stay cool in the scorching 116 degree temps Redding gets. This was a challenge since my kids don't understand how to NOT play outside.

Enjoyed a wonderful fourth of July with our cousins in Sacramento. We decided to do a cool art project for flag shirts this year which was really awesome. Only problem is, it led to Elijah's first meltdown about his hands. He asked me for the first time "Why did God make me look different than everyone else?" It broke my heart as it was the question I had been dreading him asking me since the moment he was born. Fortunately I was ready, and I am proud to say I got through my little schpeel without shedding one single tear. That takes effort folks. Fortunately, I got to tell him that the very next day we were off to handcamp where he could meet other kids just like him.

*Which brings me to handcamp. No way am I gonna give a tiny blurb on the lifechanging affects it had on Elijah. It will have to be a seperate blog post. But for now, let me just say it was amazing and we are blessed to have this community of parents and kids and people who take time out of their lives to play with, nurture and love on kids with hand differences. Just looking at this picture makes me tear up.

We also got a lot of swimming in so far. And even tried our hand at kayaking. Which, with three small
children isn't easy. Noah has been especially brave
this year, trying new things. He's getting to be so big standing next to his big brother.

I also got some not great news about Olivia's therapy. Her Sensory Processing Disorder continues to be a challenge. We're working everyday and she's getting better and better but, there is still a lot to go. Last year, we discovered that she had a connection with water. She would go under for a while and never be scared or cry. She would try to swim with little effort and not mind a bit floating on her back. Her therapy is coming to an end, though she still needs a lot of help. I've been trying to brainstorm ways I could help this little water baby and heard of a really cool thing called swim therapy.

 For sensory kids, swimming feels good on their skin. The pressure makes them feel great, and because she often has trouble controlling her muscles, the weightlessness of water allows her to be a graceful little fish. When there's not sun beating down on her face, she is quite content to be in the water for... well forever.

Because we live in Redding, there aren't a lot of options out there for sensory kids. In fact, there aren't any past age 3. So I applied for some funding at our local YMCA and researched how to do swim therapy on my own. Between Elijah and Olivia I've been doing kid therapy for 6 years. I was pretty sure I could hack it in the water and was determined not to let my baby girl slip through the cracks. Problem is.... we didn't qualify for funding. I have been pretty discouraged about it. Still not giving up, but feeling like I'm tired of fighting and nothing happening. It feels like punching underwater.

But still we press on. I'm considering several next steps. Possible fundraiser? Oh I hate asking for money. Maybe haggling with the manager? I'm not sure. The point is, it's been a summer full of happy times and also obstacles.

And here we are, back where we started. This is me, vowing to be more transperant about my life. My boring, mundane life. This is what life looks like with 3 kids, 2 of them struggling through disabilities. But we manage to make memories, and laugh and have good times together. This is my life.

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.