Archives for posts with tag: teacher

IMG_2292National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan.   We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck.   They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other.   We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

Joy

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IMG-9604This is Grace’s communication book from school. She’s had a lot of “not great” days this year. I’m glad the school tells us, but it’s hard to see. First, it makes me sad. I want her to do well. I want her to pay attention, learn, be part of the action. I want her to succeed. I want her to not cause her teachers more stress than she should.

Then I wonder what I can do about it.   She could get a “not great” related to seizures, tiredness, or unwillingness to participate.

Seizure control continues to evade us. (I don’t expect total seizure control – I expect minimal disruption from seizures). She went through a period where she was having some really hard seizures. That period seems to have passed.   But we still have some med changes to get through.   I’ve been putting off the med changes because I just don’t feel like she’s ready.  At times I feel guilty about that.  I don’t want to have her on more meds than she needs, but every time we change her meds it messes up her equilibrium. Sometimes it’s easier to stay with what you know than to take a risk that things will be worse. That’s especially true when things feel hectic.

If seizures aren’t bad enough seizures make you tired. But she’s also tired on days when she isn’t having a lot of seizures. This weekend I woke her up at 9 am. I’m 100% certain she would have kept sleeping but she had to play baseball. Is she just tired because she’s 11? Is she tired because her brain activity isn’t allowing her to rest well? Is she tired from meds? Is she tired from stress? Is she just bored? Is it something else? I don’t know.

And then there’s the whole thing about her being unwilling to participate. So then I wonder if what she’s doing is not interesting to her? Is she bored? How do we spark her energy? How much imagination does she have? There are times I delight in her attitude – it means she has spunk! “Not great” days don’t really bring out that delight.

I can’t incentivize her. I can’t punish her. I can pep talk her all I want but all she does then is look me in the eye or lean her cheek toward me to rest her head on mine.

So I’m stuck. The “not greats” tell me something but the rest of the picture is incredibly vague.

In the midst of not knowing I have to stick to what I do know. Something will become clear, but in Grace’s time, not mine. I can’t be scared to push – she needs that. I know her team is working hard. I continue to thank them and try to signal I hear what they are telling me. I update them on all things Grace I can think of.  And finally, I just have to believe that this will pass. The good and great can come again.

Joy

“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past inDSC00327 the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to.   We had him because our family didn’t feel complete – we’d always talked about having two kids.   Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him.  But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

We shall see!

Joy

 

IMG_8075As the school year winds down families are invited to come to the school and walk the halls packed with artwork. I love walking through to see all the creativity. It’s the first time we really see what Grace has been up to in art because they package all her artwork up in a portfolio that she brings home at the end of the year.

As Grace has gotten older Art has become one of those subjects that I find myself getting touchy about – but I’m not really sure what to do about it or whether or not I’m overreacting.

As I walked the halls this year Grace’s artwork really blended in with the work of her classmates. I don’t think that anyone would look at her artwork and know that she is profoundly impacted by epilepsy and functions at much lower level than her peers.

Grace really loves artsy things. She likes to paint, will color on an iPad or my phone, holds onto a marker pretty well and moves it around. She loves texture and paper. She’s even able to cut a little bit with the help of special scissors and someone holding the paper for her.  One of her favorite places to walk around is Hobby Lobby.

I’ve seen the evidence that she’s in Art. There’s been paint on her clothes and her helmet.   There has been clay in her hair on occasion. I love when there is evidence that she’s been creative, I do not mind in the slightest cleaning it up.

What I do mind is not seeing her in her art.

But here’s the thing. This year third graders made portraits of themselves and dogs out of clay. Grace is not capable of either. These are lessons that the art teacher is teaching and they are out of Grace’s grasp. The art teacher can’t personalize each lesson to Grace, it the responsibility of Grace’s aide to do that to the best of her ability.  Art is also considered an ‘inclusion’ time for Grace because she is with her general ed class when they go to art. I’m sure she’s being given the opportunity to make choices as projects unfold. But ultimately does that really make the work hers?

Would I be happy walking the halls seeing her smooshed clay in the midst of everyone else’s dogs? Or a bunch of colored paper glued on a larger paper in the middle of everyone else’s portraits? I’d like to think so, but honestly I think that too would make me sad.

I’m not sure that this is something that can be resolved. It may be that this is part of the grief of special needs parenting.

Joy

 

 

EEG at NightA few weekends ago Netflix recommended that Grace watch “High School Musical”.

I was introduced to the movie when Grace was one. She was hospitalized for something like fifteen days as she began the ketogenic diet. The keto diet is a high fat diet that changes how things work in your brain because your body is getting its energy from fat.

It didn’t go well. It threw Grace’s body off. I was with her by myself for a lot of it because Kevin had started a new job. I watched the movie a zillion times it felt like. It was oddly comforting. The words to some songs really got me.

“This is not what I want, this is not what I planned and I just got to say I do not understand. Something is really not right. Something is really wrong and we’ve got to get things back where they belong”

“This is the start of something new”

And the ending song “We are all in this together.” I cried a few times listening to that one.

It wasn’t just the songs. The whole concept that you don’t have to be defined by any one thing is in there.

That movie takes me back to that time in a powerful way. My love for a little Grace, the desperation to do whatever we could, all the cuts on her feet to check blood sugars, my panic that this would be an option that would fail, the absolute wonder I felt when it turned out that if we added 1/16th of a teaspoon of Morton Lite Salt to the formula that she would be able to do it. That’s not much salt – but it had a huge impact. I remember how tired I was from fighting my own emotions. I spent so much time holding her on a hard plastic couch watching that movie where a happy ending was shared by all. It helped me keep going in some way.

We were back on the epilepsy unit this week with Grace. They’ve built a new unit since we’ve been there last. It’s beautiful. There are pictures of dancing all around. In our mind it is the place to be if you’ve got a tough kind of epilepsy. Things for Grace didn’t go as well as we’d hoped. Almost nine years after that keto diet visit I found myself again thinking…this is not what I want, this is not what I planned, and I just got to say I do not understand.

There is so much about Grace’s brain that is complicated. It’s easy to get caught up in that especially when things aren’t going the way that you want. It’s easy to feel like we are helpless and only able to guess at what may work because there are no answers.   Unlike the movie this won’t be quickly resolved, but we have a plan.

We won’t let her be defined by one thing. Kevin, I, her doctor, her nurse, her team at school, we are in this together. And there is a whole team of people who make sure there is music and dancing in her life. It’s not exactly a Disney movie, but it’s our story.

Joy