Rebecca Update

Rebecca is a girly 6 year old girl. She loves to shop and to wear dresses and play with her dolls and stuffed animals. She insists on taking something with her wherever and whenever we go anywhere. She cannot leave the house without a baby or a toy or a purse or something. Lately it has been the doll stroller...which must be filled with stuff and then loaded into the car in the back seat with her.

She has a great imagination, and can often be found in a corner, acting out elaborate make believe tales with her dolls or stuffed animals. Although she is able to read now, she still likes to read books "her own way" and I love to listen to her crack open a new book from the library, and just make up the most creative and interesting tale to go along with the pictures. Believe it or not, she sometimes will take blank books, (like a pad of drawing paper) and turn the pages, while telling a story aloud of what is happening in "the book." Fascinating and lovely.

She loves being in Kindergarten and has learned SO MUCH in one year I can hardly believe it. She has a wonderful wonderful wonderful Kindergarten teacher. Miss Brochu is young and excited about teaching. If you met her, you would guess that she was a Kindergarten teacher. Becca is learning to read, and can now read most Easy Reader level 1 books by herself, with a little help. She is also able to write sentences, and simple stories all on her own. It's so exciting to watch her learn these hugely important skills. She gets so excited and is so proud of herself when she sounds a word out by herself, and can figure it out on her own. Becca loves going to school, is excited about learning, and is doing really well. Her Kindergarten class is the only one in the school doing weekly spelling tests, and Becca has gotten 100% on all but one test. She is so excited whenever her class starts a new unit, that on the first day of the new unit, as soon as she jumps in the car, she asks me to take her to the library so that she can check out as many books as she can about the new topic.

Becca also joined the TBall team, and has gotten really GOOD! She is one of the few kids on our team who can hit ball off the pitch, and she's got a pretty good swing too!

Becca is a very social being, and is always happiest when surrounded by other children. Any children. Any age. If they are younger than her, she loves to direct the play, and from my observation, other kids enjoy having her do so. Ryan especially won't move until Rebecca tells him who he is supposed to be and what his role is. "OK, you're the puppy, and you lost your mommy." She attracts kids like bees to honey at the playground. I've never seen anything like it. She has a "boyfriend" in every port too. One in playgroup, one on TBall, one in her Kindergarten class, one in another Kindergarten class, one in the neighborhood...although she'll tell you that all these boys have professed their love to her, she just likes them as friends. Fine by me.

Health update PART A: As most of you know, she is sick ALL THE TIME. Primary symptom is a wet phlegmy cough. Most of the time it develops into a bacterial infection and she has to use antibiotics to get better. For the past 3 years, she has been on antibiotics about 10-12 times a year. Usually her cough goes away for about 2-4 weeks at a time before coming back, but often she can have the cough for 6-10 weeks before it goes away. This doesn't really get to her though, and she rarely misses school or other activities because of it. She's gotten used to it, and never complains about having the yucky cough. After being bounced from one specialist to another, she was recently diagnosed as having a primary immune defiency. Our immunologist started her on a monthly IVIG treatment of an infusion of high levels of IgG plasma to boost her immune system. So, this means getting an IV once a month for a treatment that lasts 3-4 hours. She's had two infusions so far, and unfortunately had some bad side effects both times. We're told that the side effects will lessen with each treatment, so let's keep our fingers crossed! We haven't seen any health improvement yet, but we're keeping our fingers crossed this works! She's been a real trooper about the whole thing. She is obviously scared about the process, and worries about it a LOT in between treatments, but she did much better the second time around. Hoping that trend will continue.

Health update PART B: Rebecca's behavior can often be challenging. She can be tempermental, have mood swings, and can often be snappish and irritable or just plain mean. At times she loses impulse control, and at her worst she has meltdowns and temper tamtrums resembling a toddler's. The worst behavior is when she's in a situation that is chaotic or noisy, or stressful, and transitions have always been challenging. When I spoke to my pediatrician about her behavior, he recommended that she be evaluated for sensory processing disorder or sensory integration disfunction. She was on a waiting list for 6 months, but we recently were able to get her in for an evaluation, and the occupational therapist we met with agreed with our pediatrician's assessment.

In short, this disorder is when a person's body receives input from one or more senses, but the brain doens't process it correctly, and in turn this causes the person's arousal system to set off alarms because the brain is interpreting the input as a threat. It triggers the "flight or fight" mentality. Twice, Becca has become so scared that she's actually run away, although usually she goes to "fight" mode.

Becca has always been a clutz. When she was younger, she couldn't cross a room without falling down. She's a little better about that now, but the child trips and falls down almost every day. She falls off chairs and drops stuff and bangs into things on a regular basis. She is also afraid of trying new physical activities, particularly if they involve leaving the ground- like climbing a new slide or sledding down a hill. The therapist shared with me that all of these are signs that her vestibular system is not working properly. The vestibular system controls your sense of balance, and let's you know where your body is in relation to your environment. It also tells you whether you are moving or not.

The vestibular system is closely linked to the arousal center in the brain. So what this means is that because Becca's vestibular system is out of whack, her arousal center is often set to high. Meaning that at times she has a low tolerance for all kinds of sensory input, and that's why she acts out inappropriately. I say "at times" because it feels very much like she has an ON/OFF switch. When her swtich is ON, she can be a pill to be around- everything sets her off. When the switch is OFF, then she is lovely to be around, and she experiences none of the issues I've mentioned. This is apparently a hallmark of this particular disorder. Unfortunately, there is no way to access this switch or to unplug it. The best we can do is work with her to give her coping mechanisms for when the switch is ON.

The therapy sessions involve physical activities intended to increase her tolerance for activities that normally make her feel scared. Most activities have to do with increasing her sense of balance- like swinging side to side without holding on to something. In addition, the therapist have given me some things to do with her at home to be proactive with her in depressing the arousal center so that she doesn't get worked up in the first place. One of these activities is using a surgical brush to rub on her arms, legs and back, followed by joint compressions. This is similar to a massage, in that it relaxes her and makes her not feel as scared.

I share this with you knowing full well that several members of my family feel this is all hogwash and nonsense. No one had ever heard of this disorder when we were growing up, and kids who acted the way she does were just thought of as poorly behaved and in need of more discipline.

While this may be true- I want to share with all the doubters out there, that I think the occupational therapy and brushing is really working. Before the therapy, getting her out the door in the morning was a huge battle, often involving screaming on my part and yelling and door slamming on her part. Now, after she eats breakfast, we do the brushing, and every step that she has to take to get to school after that (brush teeth, get dressed, do respiratory therapy, etc.) is done pleasantly, with little to no resistance. She is like a "zen" child in the morning now. Happy and peaceful. She used to break into tears or fits of anger every day when I picked her up from school, and now she is happy and smiling and easy to be around.

I really don't care what the label is, or that it has a label at all. I was really just looking for help in any form for ideas, discipline strategies, therapy- whatever! to help improve her behavior and attitude, and I do feel that we're on the right track. For me, this has been a life changer. I'm hoping it continues.