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Thursday, September 19, 2013

Light in the Darkness

I'm sitting at gymnastics, watching from the waiting room as Ella hops down a long trampoline with her arms up above her head and a stuffed animal between her knees. Her bright blond hair bounces and she smiles with pride. She amazes me. I am so amazed at the progress she has made in the past year. 

Thank you to all the people who have given Ella the skills to be successful in all areas of her life! Thank you to Carol for seeing the athlete in my daughter, and teaching her how to do so many things with her body. Last year, Ella couldn't twist her torso because her body and brain hadn't discovered that is something a human is made to do. This impacted many of her gross motor skills. Now Ella is taking dance class, cheer class, and gymnastics. She twists and turns and does ballet and tap dance and walks on a balance beam several feet off the floor. Incredible.

Thank you to Ashley for showing Ella how her mouth can make so many sounds when she talks, so that people can understand her better and better. Thank you for giving me the tools to help her practice at home. Thank you for seeing the brightness and sharpness in Ella, and for knowing she just needed a little nudge to get her speech going on the right track. Thank you for your gentle spirit that matches Ella's, so she is always happy to see you and never reluctant to "play." Incredible.

Thank you to Laurie for the continuing help with all things sensory. All the things you give me to try are like miracles for Ella. This morning she told me she "loves astronaut training!" I can see changes happening before my eyes because of this technique. Ella is not so scared when other kids invade her personal space. She does not recoil when touched by other kids. In her therapy group last week, Laurie told me that another girl touched Ella's fingernails and asked what was on them. Ella shrugged and said "nail polish." Last year, this interaction would have derailed Ella. She would have been blown over with the impact of someone else she doesn't really know touching her. She would have recoiled into herself and not been able to speak. What progress!

Ella is sleeping a little better, especially since I started using our weighted blanket a couple nights ago. I tried it a while ago but Ella was very upset that this strange thing was on her in the middle of the night. So we put it away and just got it out to try again. 

Ella is so brave at the playground, at gymnastics-- things that used to frighten her to the point of tears she is now conquering every day. She keeps up with her peers much better, and isn't so afraid to try new things like doing a backward flip in gymnastics. Things like being upside down used to be just impossible because her vestibular system was all out of whack. Now she does flips and summersaults without a second thought. Is this really the same child as a year ago!? Even little things have changed, like Ella doesn't scream like I'm torturing her when I put a teeny ponytail in her hair. She doesn't cry when she is dropped off at school, classes, therapy...She's swinging from a bar right now without help for crying out loud!! What?? Is this really my child? She is just so much more comfortable in the world, which as a mother, is one of the most important things you want for your child. You want them to just find comfort in their skin, in their universe. And I know from my other children, this is not something that comes easily or often. This is something we fight for every day, yearn for, hope for, search for. It's good to take a step back and realize we are making little improvements here and there, and all our hard work is paying off in some places. Like for Ella. Incredible.

When you have a bunch of kids who get a bunch of interventions, it's sometimes hard to keep track of what's helping whom, who's making improvements, who needs their meds tweaked, who needs more sleep, who needs a bath to calm down, whose tooth is loose, who needs to see the cardiologist or the GI doctor or the hip specialist or the podiatrist or the allergist or the when I remember to stop and look at what is going on in each of my children, and I come back with the kind of strides Ella is making, that is huge. And worth taking a minute to say thank you. It's so crazy to me that we see our therapists once a week, they do their thing with each of my kids for an hour, then we go home and live our daily lives. And the changes the therapists are making for us are completely life-altering! Completely, amazingly, incredible. And yet, I don't know if they know what a gift they give the families they work with every day. They give us hope, tools to help our kids where there were none before, they give us ideas of how to work with our kids to help them be more comfortable and successful in their own skin. This is probably the most important job on the planet, being a therapist. And the waiting room is full of all of us nonchalant families every day, just there for yet another therapy, not realizing that today may be the day that something sticks for our kid!

Ella had her 4 year checkup with our pediatrician yesterday. It struck me how different it is going to our wonderful pediatrician than it is to go to The Therapy Tree every afternoon five days a week. I love our pediatrician. She's great at what she does. (She did say Ella needs to go back to the cardiologist because her heart is acting more funky than last year. Thanks. Really needed to hear that.) But there is such a difference because when I say that Ella gets up between 4:30 and 6am every day, the pediatrician says things like "it's really important for you both to get more sleep. (Duh) Try using a sticker chart for every time Ella stays in her room longer. (Been there done that) Try having her play quietly in her room without coming to get you. (She shares a room with Aidan. Even if he wasn't also an early riser, she would wake him up doing that.) She really needs to sleep more. (Ya think?)" These are ideas I have been trying for ELEVEN years with all my kids. Sometimes we need more help than just these answers.

When I say to our OT that Ella is having sleep issues, I get practical, creative things to try. A weighted blanket might help. Maybe brushing. Maybe astronaut training. Maybe an alarm clock that has a sun and moon, so when the sun is lit, Ella knows when to come out of her room. Maybe a protein snack before bed. Maybe therapeutic listening. Yes. These things actually help.

I'm not saying our pediatrician is totally useless. I'm just saying that this was the problem 11 years ago, and still is today: I can't find real help for my really intense kiddo problems at our doctor's office. Which I think is a shame. When you're a family in crisis, a pediatrician should know what will help, or at least where else to look for help. I have discovered through my dealings with people in the medical profession that they are awesome at helping when a body is broken or sick, or if a heart needs monitoring. But when it comes to things like how to make your child more comfortable in their world (sensory issues, mood issues, tic issues, eating issues, sleeping issues, anger issues, anxiety issues) I have learned much much more from our therapists. I know I'm a "think outside the box" type of person, and I look for things that help the whole child, not just meds to fix a problem. I think when you're a parent, you just have to find the place that fits you the best to look for help. I love our team of medical professionals. But when our family is in crisis, which we often seem to be, I look to our team of therapists. And they should win Olympic Gold for that, or a Nobel Prize, or Therapists Of The Year, or something. We see eight therapists for eleven therapies each week, give or take a couple extras here and there. Little by little, these incredible, "think outside the box" professionals are changing the worlds my kids live in. It's slow, slow work. But it does work. I know because I have a little girl who went into her gymnastics class without crying this morning, and who is now walking across a balance beam, while kicking each leg up in the air one at a time, with no coach to hold on to. This girl did not exist a year ago. So thank you, again, to all of Ella's therapists, and Ben's, and Aidan's, and Jonah's. Thank you for the hope you give me five days a week. Thank you for helping my kids learn how to find the light in their darkness. 

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