I've mentioned before that Raya sees an occupational therapist to work on her difficulties with sensory integration. (See here and here for more about sensory processing disorder & OT.) For a few weeks now, she has been making the transition from the dysregulation phase to the self-regulation phase. Her therapist warned me when we started working with her in March that this phase would eventually come and that we wouldn't like it. She was right. I love my sweet girl to pieces but this phase is a test of our patience.
According to the fabulous website Understanding SPD, "Self-regulation is the ability to adjust or regulate the level of alertness depending on the time of the day and the stimuli presented." Children with sensory processing disorder have difficulty with this. They are in a state of disorganization that doesn't allow them to respond properly to stimuli in their environment, much less to constantly adapt to the changes in their environment. Things like background noises, changes in lighting and movement can wreak havoc on children who are unable to quickly process these changes and adapt appropriately to them. If you've ever seen American Gladiators, living with sensory processing disorder is a little bit like running the gauntlet. Things in your environment are constantly acting upon you and just when you're about to get a grasp on what's happening to you, WHAM. There's another giant bean bag whacking you in the face. Or at least that's how I imagine it...
Raya's OT talks often about the fact that sleep and nutrition are the body's primary regulators. If there is a deficit in one or both of those areas, it has a significant detrimental effect on the body's ability to self-regulate in other areas. This is one thing that makes me feel so blessed that Raya has had a feeding tube for so long and that it has allowed us to keep her nutrition as complete and consistant as is humanly possible. It doesn't get much more consistent than being pumped in at a programmed rate by a machine, and according to Nestle', she's getting complete and well-balanced nutrition. (we won't get into the canned formula debate though) For the most part, Raya has been a great sleeper other than all the times she would wake up to vomit and then earlier this year when she would wake up at 11:00 at night and think it was morning and demand to watch Cake Boss on Netflix. She's gone through phases where we had a really difficult time getting her to go to sleep though, and I think we can all relate to how it feels to get a lousy night's sleep and then have to get up in the morning and do whatever is expected of you that day.
The lack of ability to self-regulate can be easy to mistake for bad behavior when in reality, the child is just reacting to something that is perceived as overwhelming. If you see a child screaming in a grocery store, don't assume that the kid is just being a brat. His head could be pounding because of the flickering of the fluorescent lights. The elevator music that you find mildly annoying could be like nails screeching down a chalkboard to him. He may have seen his favorite treat and now eating it is all he can think about. The lines on the floor might be making him feel dizzy. Someone may have accidentally brushed up against his arm and now he can't get that feeling to go away. He may have started crying because his sister accidentally stepped on his toe and now he can't make himself stop. Behavior is not always what it appears to be on the surface. This is something that concerns me looking ahead to when Raya starts school. If she can't self-regulate, how is she ever going to be able to pay attention in class? How in the world is she going to be able to sit still at circle time for 20 minutes while her teacher reads a story? If she can't walk from one end of our living room to the other without getting distracted and forgetting what she was doing, how will she ever finish a worksheet of math problems? Is her teacher going to be able to tell the difference between behavior and when she's having sensory integration issues and have the patience to work through things with her?
As it has been explained to me, when the child starts to move into the self-regulation phase, he or she starts to gain self-awareness and starts to be more able to exert his or her will. We have seen this side of Raya start to emerge in the past few weeks and it's exciting and frustrating all at the same time. Obviously we are excited to see her making progress, but her OT wasn't kidding when she said this phase would be difficult for us. Suddenly, Raya has an opinion about EVERYTHING, and everything she does takes For.EVER! Now that her mind is not as consumed with such basic things as perceiving her position in space or processing the fact that I'm putting clothes on her, some of her cognitive ability is freed up to think about things like whether or not she WANTS to wear what I'm trying to put on her. She's realizing that she is capable of focusing on tasks and thinking about what she's doing rather than just blazing through things.
The down side of this phase is that there are a lot of fits over small things that there never used to be fits over. Every little task takes exponentially longer than it should. She's getting frustrated because she can't verbalize and communicate her wants as well as she'd like to. It's taking a huge amount of patience and planning ahead even with the most minute tasks like putting flip flops on or walking from one side of the living room to the other. Add in the typical stubbornness of a 2 1/2 year old and Raya's natural spunk and it's kind of the perfect storm.
This week's little illness has taken its toll on her. She's been extra emotional and her favorite phrases are, "I want ya'!" (to me) and "Don't talk me!" (to everybody else) She's always pretty easily distracted but this week it's been much worse, and she moves at the speed of molasses on a cold day in January whenever we ask her to do anything. This morning when it was time to go to OT, she came in the bedroom wearing pajamas with a dress inside out and backwards on top of her jammies. I had clean clothes picked out for her and she got mad when I started trying to take the dress off. Since I know that her resistance to me helping her lately is because of the progress towards self-regulation, I usually allow her to go at her own pace when we're changing her clothes and things like that, but today we didn't have time for that. I try to pick my battles but today we just had to do that meltdown wrestling match to get her into therapy-appropriate clothes that were worthy of public viewing. Then I told her to put her shoes on if she wanted to go to therapy, so she walked over to the shoe basket, got her shoes, and just stood there and stared at them. I told her again that she needed to put her shoes on so we could go. Again, she just stood there and ignored me and didn't put them on. I was out of patience and running out of time if we were going to get to therapy on time so I picked up the shoes, picked up the kid, and walked out the door.
She cried most of the way to therapy because she was upset with me for not letting her put her shoes on and not letting her buckle her own seatbelt buckles (even though she's not quite able to yet). When we got there, she was happy again and walked straight over to the book rack. After a few minutes in the waiting room, her therapist came out to get her so I told her to put the book back that she'd been looking at. It had a little squeaky thing on it and she completely ignored me asking her to put it away and squeezed the squeaker over and over and over again. Her therapist told her 3 or 4 times to put the book back so she could come and play and she didn't acknowledge her either. Finally, she walked over to Raya and helped her put the book away. Then she picked Raya up and started to carry her out of the waiting room and Raya started bawling and reaching for me. (she's been extra clingy lately) Her therapist handed her over to me just in time for Raya to start having one of those nasty little coughing fits she's been having this week that sometimes end in vomit. Based on the first 2 minutes of our appointment, her therapist decided to go in a different direction with her therapy session today. :)
She started out with massage and soothing music and instantly we could tell that it was exactly what she needed. She's just been on overload and needed some relaxation. After the massage, she climbed up on me and clung to me like a baby koala again. We walked over to the cuddle swing and I peeled her off and put her in. At first I didn't think she'd stay in but she did. It hardly moved and she hardly moved the whole time she was in it but she seemed happy.
After she got out of the swing, she decided that she wanted to climb up and down the stairs for a while so we let her. Stairs are something that she struggles with. She can go up and down the stairs pretty well but if you really watch her, you'll realize that she only steps up with her right foot and only steps down with her left. We don't expect her to be alternating feet yet because she's not big enough or old enough to do that safely, but she should be able to use EITHER foot to step up and down and she won't unless you prompt her. When she does step up with her left leg or down with her right, you can tell that her left leg is weaker and it's more difficult for her to maintain her balance on that side. She was enjoying herself and today, that was pretty much all we cared about.
Next week is Circus Week so her therapist decorated the stairs to get ready. :)
After she'd had enough of the stairs, her therapist pulled out the little excercise trampoline and she jumped her little heart out for a few minutes. (that's another activity where you can tell that she doesn't used both legs evenly) She LOVES to jump because of the strong sensory input it gives her. After that, we put her shoes on, said goodbye to the goats, and headed home. She was out before we even got there.
She had a little bit of a leftover pancake after therapy but that was all she wanted other than her beloved ice cubes. This evening the 2 big kids went with Donny to martial arts class he teaches so the little girls and I went swimming. They both have floaty vests and do pretty well with them or there's no way I'd take those two swimming by myself. Neither one of them has any fear. We swam for about an hour and the pool felt like a bathtub. Not super refreshing but still nice. :) When we got home Raya had 2 club crackers and Kaida ate a bowl of cereal. They showered and then went to bed and fell asleep right away, which is of course the best thing about taking kids swimming. :)
One of the challenges of living with sensory processing disorder is that you never know from one day to the next what things are going to be like. I guess being the parent of a child with SPD is a bit like running the gauntlet too. Just when you think you're starting to figure things out, they go and change it up on you. The beauty of it is that you see glimpses here and there of the person that you know is inside there trying to find their way out. Those are the moments that recharge your tired spirit and help you to find another ounce of patience when you think you've used up your very last drop because you know that your child's future is worth it.
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