Archives for posts with tag: aide

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.



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.




IMG_2676Today was Grace’s last day of second grade. When I got home from work I put her braces on her legs and took her outside to get a last day of school pic. She likes to walk more than stand still, and it was just me her and Graham so I did the best I could. I was so excited for her – so happy she was officially a third grader – she smiled at me as we talked about it.

About 45 minutes later I was unpacking what she’d brought home from school. The school supplies we had so carefully picked out at the beginning of the year were all in a sack. They came home untouched. The crayons that had looked beautiful at the beginning of the year and somehow held promise of all there was to come were not used. The markers were unopened. The pencils my dad had helped me sharpen for her – still sharp and tucked in boxes that had never been opened. The three notebooks I’d sent were there. One had been used, but just a few sheets. There were markers in pristine condition, pencil boxes without a scratch, erasers that had never erased and it just made me so sad. It’s one of those things that they don’t tell you when you are a special needs parent…what should you really bring. In past years things have been used, but second grade is more academic and evidently that means we no longer need to supply her with tools for learning. I feel a little like we have been relegated to just supplying Kleenex – because that’s the stuff that Grace uses up in a classroom.

Second grade has been really hard, for a lot of reasons I can’t speak of now. I can talk about a few things. We tried out two communication devices each for 4-6 weeks, not when we had a lot of time to invest in the trials but instead when the device was available.  Both showed us that Grace can communicate and it feels cruel to set her up to use something, see and hear her, but neither was quite what she needs- so more trials to come. More systems to learn.  More waiting to communicate. One of the devices was so heavy and large we sent it back and forth to school in an IKEA big blue bag.  This was not a small undertaking or one we could take lightly.

This year Grace was more medically complex than she has been in awhile. We had to start using a catheter to empty her bladder because she was having frequent urinary tract infections. They showed both Kevin and I how to do it in less than 10 minutes and then sent us on our way with a bag of supplies. At first it was just once a day. At first though it was very hard and very frustrating. Grace didn’t know what we were doing, we didn’t know what we were doing, and it is just not a pleasant procedure. When we were first beginning there was a Sunday morning when Grace and I had struggled to get it done. I was so frustrated with myself, with her, with the situation. We got to Sunday School that morning and we were warmly greeted by the couple who were teaching Grace’s class. I only had one foot in the classroom and I just lost it. I couldn’t bear to take my girl into that classroom with all of those beautiful children who hadn’t had to be catheterized by their mother that morning. So I told the teacher we’d be back and I took Grace back out into the hallway. Another woman saw me crying, brought me two chairs and Kleenex, but didn’t say a word. After a few minutes I calmed down, I took Grace into the room and we did Sunday School. It was a horrible point for me though. We now cath her every 4 hours while she’s awake – we are better at it, she is more patient, but it’s still not pleasant.

This year we had a hard time keeping Grace healthy – we would joke that somehow second grade was more germy.  We kept her home a whole week when she was diagnosed with the flu. We kept upping her seizure meds bit by bit because the sickness caused an increase in seizures no one liked. The epileptologist recommended we find an immunologist for Grace. We tried to find one in Iowa, but there wasn’t one who could/would take her on. So, we drove to Minnesota. They did some testing and it turns out that Grace doesn’t have a great immune system. The immunologist was amazed that she isn’t sick more. All the vaccines we have given her over the years – trying our best to protect her and care for her – part of what we learned is that many of them didn’t take. They offer her no protection because her body has no way to “grab onto” the vaccine to develop the necessary antibodies to provide her with immunity. We’ve started monthly infusions, in Minnesota, to help boost her immune system. I find myself afraid for her- for the smallest bug to get to her – all the while knowing there is no bubble for me to put her in. She has to live her life.

This year there was a new home health nurse taking care of Grace. He’s done a fantastic job running up Grace’s steep learning curve. Most weeks he is with her 5 days a week, 9 hours a day.

Grace had an aide for the first time this year at school. Two different ones actually.   They had to learn about her, and serve as her voice, and I don’t know them well, so I tried as much as I could for them to have the information they needed to be Grace’s voice.

We didn’t hear as much about peer interaction. A few names are mentioned in her communication book, but the mentions seem far apart.

In first grade she’d walked clear across the building by herself to get to her first grade classroom. For a good chunk of the first part of this year she for some reason would not walk the 10 feet into her 2nd grade classroom. This was resolved when some of the things outside the door were moved – but amazingly it took a long time to figure that out!

I struggled to understand what kids are supposed to be learning in 2nd grade, so I didn’t even feel like I could talk to Grace about it.

I have officially cried in the principal’s office now. They weren’t polite tears; they were the big ones where she had to get me Kleenex.

I’m so glad for Grace to be done with this year. For her to have a chance for something more.

There was also an envelope among her things. It was a note from the woman who buckled Grace into the bus every morning. She wrote how much she enjoyed knowing Grace and that Grace was a large part in inspiring her to go into special education. Which is wonderful. Grace’s special ed teacher is pivotal in our minds.  We go to her for counsel about a variety of things. I live in fear that she will leave the elementary school before Grace is ready to leave it. As a special ed teacher she walks this line of school politics, parent wishes, general ed teachers, and physical complex needs of her students that I wouldn’t wish on anyone. But when I hear her use her teacher voice on Grace and see Grace respond I’m so grateful that she does it. Not just for Grace but for the others in her room, and for us too.

So some good did come out of unpacking that bag. But the crayons, markers, notebooks, pencils and such are still on my dining room table, because frankly I don’t know what to do with them. They seem dirty somehow. But maybe we can make them beautiful again this summer. Find a purpose for them to help Grace grow in only the amazing way she can.