Archives for posts with tag: communication

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

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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

img_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

img_0955I hesitate to even write this. I hesitate to even begin. I’m not one to post on politics. I choose more often to focus on the less controversial topics that we deal with as a special needs family. My hesitation is also based on me finding myself trying really hard not to judge based on political views. I don’t want to be judged for mine.

But the truth is I am struggling. In large part, we write this blog to serve as a record of our journey with Grace. I forget. I move from one thing to the next and details get foggy.   At this time, I can’t ignore the weight of the outcomes of state and national elections on Grace or our family. It’s worth including here as part of the story.

If I boil it down to what I think might be the root of the struggle it’s the possibility that the affordable care act could be repealed and more specifically that insurance companies could again elect not to cover someone with a pre-existing condition.

When Grace was born we made all the calls and filled out all the paperwork to get her covered by my health insurance company. When Grace was 15 days old we got life insurance for her. She was diagnosed at around 5 months of age.

The life insurance agent has told us in the past we were smart to get the insurance when we did if we had waited until after she was diagnosed her policy would have been denied.

When she was diagnosed there was no such thing as the Affordable Care Act. That’s when pre-existing conditions became part of our vocabulary. We looked at changing insurance at one point but because of her diagnosis, Grace wouldn’t have been covered. Do you remember those stories about families who went bankrupt and were homeless because they were caring for the medical needs of someone they loved? Those stories have haunted me. The very first medication we gave Grace cost thousands of dollars.  A month’s supply of the medication was more than I paid for a brand new car.

Grace is expensive.   There is no getting around it. She’s also evolving, growing up. Her needs will change. It’s not just epilepsy we are dealing with. Sure that might be the first thing we say but she has more than 10 doctors. She receives physical therapy, occupational therapy, and speech therapy privately. Yes, she can get those things at school, but in reality what we get are consults from those professionals, not the intense work we are able to get through private therapy services.

Insurance makes it possible for her to have those therapies. Those therapies have helped her walk, made her stronger, addressed sensory defensiveness, allowed her to find a means of communication.

Insurance also means we can take her out of state to doctors who can care for her. Often, even living in the Des Moines area, Grace’s needs require a level of specialty not available here.

Insurance pays for the supplies she needs. Boxes of supplies show up at our home on a regular basis.

There’s also a wheelchair, braces, her talker, etc.

Yes, there’s Medicaid, but it has its limits. It’s also under fire.

Neither pays for many things she needs.  Neither pays for some of her meds. Many of the special needs adaptations that she needs or that add to her quality of life are incredibly pricey. We pay for them. We also pay for the trips out of state, for gas, hotels, food. It quickly adds up.

So my fear is that we would somehow lose insurance for her and have no means to get it back.

I wake up from dreams about losing our home because we had to care for her.

I wake up wondering what opportunities we would have to withhold from Graham because we are taking care of Grace.

I wake up feeling trapped in my job with no way of leaving because I have to care for Grace.

I also wake up knowing that there is no choice in the matter – we have to care for Grace. She’s ours. She has needs that we have to meet. However, we can. I feel the weight of that deeper somehow. It is a legitimate weight.

I have campaigned for Grace’s rights rather privately thus far. Advocating for her primarily in our church and her school. Believe it or not, that’s a lot. Plus advocating is just part of the special needs parent role. It’s separate from the paperwork, the appointments, the meetings, the actual hands-on care. The first time I advocated for her formally I was at a meeting where a county group was discussing cutting funds to her special needs daycare. The two parents before me had these incredibly powerful presentations with visual aids. I hadn’t thought about that at all. All I had was my planner. It had a huge pocket in the front and in that pocket I had a picture of Grace. When it was my turn I sat at the table, showed them my picture, apologized that I didn’t have a more polished presentation, and then told them our story. I told them about how no other daycare would take Grace. I told them how helpless it made us feel.

I feel a little of that helplessness now. Time has made me more polished I like to think. I can better describe how Grace is a whole person, worthy of what it takes to make her the best she can be. She has potential. She has character.   She is not less. She is not a liability. She is a person more the same than different.

And in reality, any of us is seconds away from being in a situation where we could be very sick or very injured and need significant help.

So I’m afraid. But life continues. I’m working on my next blog post where Graham tap dances by a singing rock…

Joy

IMG_9359Last week Child Life sat with Graham and while using a special doll with a port they helped explain Grace’s port surgery. Graham was able to push medicine (water) in through the port and then drawn back blood (it turned red). He’s talked about it a few times since then but the best part was that someone was focused on him explaining something about his sister.

Child Life stopped by yesterday with a Chemo Duck (ports are used frequently with chemotherapy) which is a stuffed duck in scrubs with a port, it’s not as fancy as the one Child Life used with him but it has two places the port can be attached. I took it home last night and he loved it and named it Duck; he even took it to bed with the port attached. He asked if Grace got one too and I said that the duck was just for him. He thought that was pretty cool and said that he would share his duck with Grace. Sure enough, this morning he had his duck with him on the way to daycare and he left it with me to take to Grace for the day. Tonight when Joy picked him up he was ready to have his duck back so they had to make the trek back to the hospital to pick it up!

Grace continues to make progress she has been tolerating her normal feeding volumes spread out over two hours. On Wednesday we shorten the time frame to one hour. As long as the plan stays on schedule she should be discharged on Friday. We had an x-ray last night which confirmed no further occlusions or blockages.

Joy discovered today that Grace was 44oz of daily free water short after IV nutrition (TPN) was stopped yesterday. The TPN provided her with needed nutrition but also accounted for her hydration needs. Unfortunately, there was not good communication between the dietician and the general peds resident.  Thankfully the managing doctor and resident from the PICU are keeping an eye on Grace. Joy got the PICU resident working on a plan, and she was happy to do so. Hydration is essential to all of us but for Grace a lack of fluids can lead to constipation which we desperately need to avoid right now.

Grace got out a bit more from the room on some wheelchair rides, she continues to look more and more alert and active each day.

Kevin