Archives for posts with tag: non-verbal

12262Grace turned 12 last weekend.

Twelve.

I can’t fathom how time has moved both that fast and that slow.

Grace’s birthday usually finds me a little down. It is hard to celebrate what is while also very aware of what could have been. One of her presents was a very large Sofia the First balloon. I walked out of the store feeling half excited because I knew she’d love it and half sad because her likes aren’t more age appropriate. Having said that I also feel like I should state for the record my sadness doesn’t take anything away from my love for Grace. My love for her is big, life-changing and powerful.

We took Grace to see Stomp for her birthday. She loved it. I did too. There was so much energy on the stage. So much non-verbal communication flowing between the performers and out to the audience. They did it all using objects that were not made to be musical. (Plastic Target sacks and newspapers became musical instruments at times.)

There was a point in the show when all the performers were standing in a line across the front of the stage using only lighters (clicks and flames) to deliver that section of the performance. All the lights were out- it was pitch black. Accompanying Grace in her wheelchair we were in the very front row so we could see the concentration on the performers’ faces as they clicked and burned their way through the piece. It was phenomenal to see. Being able to see it added something to the performance for me.   The look of their combined work was very precise. Small lights in a large dark room danced across the stage. The concentration on each of their faces showed their determination to make it happen.   With all that focus they made it look effortless. It seemed shorter in length than some of the other pieces but I think it was my favorite piece.

It was understated but effective.

It was potentially easy to overlook as a person relives the show because it wasn’t loud or high energy.

It was a little dangerous to learn I’m sure.

Mistakes could be easily seen by a large group of people. There was no way to hide them.

Each performer had to do the work to make it happen.

I think Grace is a bit understated but worthy. She’s easy to miss because she’s quiet and doesn’t show a lot of emotion. Loving her is dangerous in that all parenting takes courage, but special needs parenting perhaps takes a bit more daring. Parenting Grace takes place in front of a huge audience, there are many people who weigh in, many people to judge, many people to bless her, and many who help determine her future.   We are working to make sure all their input comes together and results in a growing and thriving Grace.   We are doing it all with the tools that we have. We are making our own music. Grace loves music. She can love Sofia the First and Stomp!

So here’s to her 12th year! It will be an adventure.

Joy

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IMG-5708Grace was discharged from speech therapy today for reasons that I don’t think are fair. It was disheartening, to say the least. We handled our disappointment I think pretty well and left on positive terms – but I cried. I wanted to just sit down and cry when we left and told Kevin – “I wish there were special needs crying days”. What I meant was a day where no one needed anything from me and I was just able to be sad, process what I was feeling, etc. But I know – and have known for a long time now – that there’s just no such luxury. Reality is I cried myself to work, dried my tears, and went to work. I led some meetings, sat on a conference call, and responded to emails. My coworkers were incredibly kind, or else I hid the crying really well, in the end, no one said anything.

Now I’m home and there are expectations to meet here. Laundry. Supper. Snuggling. Sight words. Cathing. Meds. Laundry. Baths. Bedtime stories. Dishes. Picking woodchips out of Graham’s coat (long story). But I’m taking a break from that to write this. I need to somehow express that I’m sad. That I feel inadequate to advocate for Grace in a world where the rules are veiled in shades of gray. That in my heart of hearts I don’t actually know what to expect from Grace in the area of communication and that I recognize that makes it harder to advocate for her. That having a nonverbal child is challenging on so many levels.   To describe those levels in words doesn’t seem possible.   I can only tell you that Grace’s silence often makes my heart ache – however a smile from Grace, and a long look straight in my eye can make me feel wonderful.

There is value in being able to communicate. There is value in taking the time to figure out how those around you communicate. There is value in listening with not only your ears, but with your mind, heart, and eyes.  Grace’s inability to communicate the “regular” way takes nothing away from the value of what she has to say.   We regularly communicate about Grace with those who speak for her and even have tried to describe in words what we think her communication style is. We do this because it’s important that her voice be consistent. Here’s what we say in Grace’s resume: “If you are serving as my voice my parents think my voice is largely optimistic, shows a sense of humor, is a little stubborn, is reassuring, and gets to the point. They don’t want my voice to be negative, put anyone down, or be disrespectful.”

Grace being nonverbal has been a constant struggle and will continue to be. I wish there were answers. But true to form Grace is Grace. She’s ours and we love her. We love her on crying days and good days. Her presence in our family is no less because of her inability to talk. We will continue in our own way to figure out how to make sure she’s heard.

Joy

img_4711One of the things I think Graham sacrifices as Grace’s brother is playing outside in winter. As noted several times before about Grace on the blog – she hates cold, and a cold windy day makes her incredibly unhappy. She complains and gives us looks like we are torturing her. Nonverbal communication at its finest!

I’m in charge of picking up Graham on my way home from work, and often I will hear other parents say things like “grab your boots so we can play outside tonight”. We hardly ever grab Graham’s boots because I know the likelihood of him going outside to play is slim. I hate that for him. The reality is that often times it’s dark before Kevin gets home and I can’t keep half of me inside with Grace and half of me outside with Graham.

This winter Graham has bemoaned several times the lack of snow. But this week it snowed! The first night Graham wanted to play in the snow so badly. I offered for him to go outside by himself, but he didn’t want to do that. So, we brought snow inside and he played with it at the kitchen table. We’ve done this a lot over the years. He gets cups and plastic food from the play kitchen so he can mold the snow into shapes. He also keeps plenty of sticks and rocks in a drawer in his room so he can add some natural elements to his snow sculptures. It’s not an ideal situation but it works.

But this week we had the good fortune of snow and the days being longer. So the second night we had snow Kevin was with Grace inside and Graham and I went outside to play in the snow. We did the normal things… snow angels, snowball fights, made tracks in the snow, found some icicles, went down the slide covered in snow. When a neighbor yelled out a greeting to us Graham happily yelled out “We are playing in the snow!!!” We went inside with wet boots and gloves and icicles in a bowl so Graham could do some experiments with them.

The third day it was over 50 degrees. We have no more snow. We played just in time!

It’s not always a sacrifice- it’s just different.

Joy

Diet_Pepsi
So, Kevin and I were standing in a parking lot outside of a gas station yesterday (each with a 32 oz Diet Pepsi) he said it seemed like everything was pretty balanced but lately we got….. slammed. (I said finishing his thought – Sorry Baby!)

We had just finished an appointment with a kidney doctor. Grace has been having a lot of UTI’s and we need to figure out why so we can prevent them. We went through it all with him. He is going to do his part but he’s also referring us to a pediatric urologist. We’ll got to Minnesota to add the urologist – it was that or Iowa City. Currently Grace doesn’t have any doctors in Iowa City, but she has doctors in three medical systems in the Twin Cities. So Minnesota here we come!

Yesterday there was an x-ray and an ultrasound – and they needed a urine sample. Never fun.

Next week we meet with the GI doctor.

The week after that we’ll head to Minnesota for the urology consult.

Three weeks after that we will be back in Minnesota and Grace will undergo surgery to implant a VNS. Even though it’s nothing as complicated as her brain surgery a few years ago – we will be back with the neurosurgeon who operated on her before. A device will be implanted over her collarbone and a small wire will be run up and connect to the vagus nerve in her neck to her brain. The device will provide regular electrical impulses to Grace’s brain. This should disrupt or decrease the activity in her brain that causes seizures. In addition to that we will have a magnet that we can pass over the device when she’s having a seizure to help decrease the severity and length of the seizure. It will take a year to a year and a half for it to be fully functioning. She may or may not be hospitalized overnight – there is a lot we don’t know. Her being g-tube fed and non-verbal increases the likelihood that she will have to be monitored more closely, but maybe not evidently.

We’ve dreaded having to do this – but the feeling now is that we need to take this next step – in the progression of doing everything we can to help Grace this is the next step.

In the meantime there will be an MRI and more x-rays. Our pediatrician will get to see us a lot because she has to have physicals in conjunction with all these things. We’ll get her braces adjusted, and hopefully we will get a new helmet soon. Pink of course.

In the middle of all of this we will trial a communication device for Grace.

We will not be bored.

Kevin and I had talked about giving up Diet Pepsi in June. All of this to tell you – giving up Diet Pepsi is no longer in the plans for June.