Archives for posts with tag: therapy

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_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_0007Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear.   We like him – he’s been amazing to work with. It sounds like we’ve actually been lucky. Only the culture from the ER showed MRSA, the one from Tuesday showed plain old Staph, and from Wednesday on nothing showed up. We caught it early. The seizure on Monday morning that made her fingers start turning blue was a blessing in disguise.

The good news/bad news, depending on how you want to look at – is that the infectious disease doctor is the guy we call if this happens again. The chance is real it could happen again. Sigh.

I’ve been thinking a lot about the book The Velveteen Rabbit this week as we’ve gone through all of this. There’s this scene towards the end of the book where the stuffed rabbit is old and worn and another old and worn toy explains to the rabbit that this is what it means to be real. To be made real by love. He explains that to become real happens over a long time.

I have felt really old and worn out this week.   Incapable of keeping all my stuffing inside. I also recognize it’s because of love that I feel this way. I recounted almost every day of the last week to the nurses taking care of Grace in the hospital that she had a normal birth, that we didn’t know anything was different about her until she started having seizures at about 4 ½ months. That since then we’ve been taking care of her in whatever direction she’d gone. My love for her has had to grow and change as she’s evolved to incorporate advocacy, medical skills, disappointments, risk-taking, research, wonder, and this crazy optimism that comes with special needs parenting. It’s real. Our last few months have shown me over and over how real it is.

It’s not just the love for Grace that’s made me feel that way this week. Graham has struggled. I was the one to give him the news that Grace was back in the hospital. His little face was just so sad. He told me one night this week that he hoped to wake up with germs in the morning so that I could stay with him all day. Killer.

In the midst of all of this, we have had crazy real loving moments.  Grace was complaining one night I was at the hospital with her, I unzipped all the zippers on her bed and climbed in with her. She calmed down immediately – we stayed like that for a good 45 minutes – no one came in to poke her or take her blood pressure – and when I got out to get meds going she was better. I took Graham to VanDees for his last ice cream with eyes for the year. It was chilly that night, so we were the only people there. Three people waited to take our order.   Graham was super nervous to order on his own with all of them looking at him, and so he whispered his order in my ear. Graham whispering is an experience. He puts his mouth so close to your ear you can feel his lips moving on your ear. It’s hushed, fast, so hard to understand, and it tickles. I couldn’t help but grin as he gave me his order. Luckily I know his order. Chocolate and white ice cream (twist) with m&m’s and eyes. Every time.

In the story, once you are real the rabbit learns you can never go back. The same is true with parenting once you become a parent it’s just not the same.

Grace is free to go back to all activities. We are watching her for cues that she’s ready to re-engage. Ready for therapies, school, baseball, dance, church, etc. It’s not just her cues we are watching – we are also dealing with our own readiness to put her back in the world with such a dramatic demonstration of her vulnerability fresh in our minds. Today she’s played some and rested some so far.     She is moving in the right direction. When she’s ready we will let her go back – because we love her. We really do.

Joy

IMG_8101At 7:39 am last Wednesday I received a text message from Rachel, Grace’s speech therapist that said, “The device has arrived!!!:)”

I replied like this….”Waaaaa!!!! That’s so exciting”

Grace now has a communication device that she can use with her eyes. Just with her eyes! This means that on a good day or bad day she will be able to use it. We aren’t depending on the movement of her shoulder, arm, or hand for her to touch a screen to activate it because all of that can take a while for her brain to process and coordinate.

From the main screen she can choose buttons like I want, I need, I feel, I like, I want to go, or I don’t. When she picks one of those options it takes her to an additional screen that gives her more choices. There’s so much power in those choices. Think about it. Grace will be able to control what’s going on around her and what’s happening to her. She’ll be in charge.

There’s also a screen with comments like “hello” and “have a nice day”. Another page is all about her. She can activate the device to say; “My name is Grace. I like to dance.” Not only can she take charge, she can relate to people in small ways.

So much of her life is decided for her and she goes along with it really well for the most part. The first couple months we will do out best to honor pretty much anything she says and we’ll be very excited to do so. This will help her understand the power of communicating. Her eyes will need practice – it’s actually incredibly straining to stare at one point without wavering for less than a second to make a choice.

As she gets more comfortable with the device there will be times she won’t always get her way. During one of the device trials Grace had said in art class that she was done. And that was honored. One night she and I were practicing here at home and she kept going to the “gotta go” button. She did not want to work on her communication. After the fourth time she got there on her own (which was pretty impressive) I did let her off the hook for the night.

It will be strange for Kevin and I too. We will have the opportunity to let Grace decide more for herself – we make a lot of decisions for her. We also have to find time for her to communicate with the device. She has to be sitting just so in order for the device to read her eyes. It has to boot up. If we can’t find the word we are looking for we will have to add it. It’s not often she’s in her wheelchair at home. She’s mostly on the floor playing which is where she prefers to be. The device is also another thing. Another bag to load on her wheelchair, plus there’s a table mount, and a wheelchair mount. Kevin is an excellent packer, which is incredibly lucky for us because Grace doesn’t travel lightly, anywhere.

All of that to say we are going to have to be purposeful about engaging her with the device. We are going to have to find a way to work it into our lives.

We will.

We will because I want to see what she comes up with. I want to see how she and Graham will use the device together. I want to hear her call me mom. I want her to be able to say “I love you.” I want to program a few jokes in there she can tell. I want to know her better. I want her to have the opportunity to know other people better. I want her to take charge where she can – she deserves that.

I know the old ways of communication won’t go away. A communication device can never take away the meaning of the eyebrow lifted, the hand reaching out for mine, the rub of the face in frustration, or the eye contact that can say so much.

But adding what she can say on a device, to what she can say without it – is such an opportunity for our girl and for us. It really is pretty exciting.

Joy

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Grace has a schedule:

  • 6:15 – Morning meds
  • 6:45 – Out of bed (allow time to wake up before next step)
  • 7:15 – Cath, get dressed, G-tube feeding
  • 10:00 – Water
  • 11:30 – Cath
  • Noon – Meds and G-tube feeding
  • 2:30 – Water
  • 3:30 – Cath
  • 4:00 – G-tube feeding
  • 5:00 – Meds and water
  • 6:30 – G-tube feeding
  • 8:15 – Cath, pajamas, meds, water, snuggle

The rhythm plays every day. Some days we fight it and bemoan it. It feels constraining, limiting. We can’t do what we want because we have to keep it going. We stretch it in places to allow the flexibility we need to get something done, but sometimes there are consequences to that. One time, one horrible time, we’d flexed it so much that we actually forgot to feed Grace. Our girl, normally so easy-going was mad. M-A-D. When we realized we hadn’t fed her we felt absolutely horrible.

On hard days the rhythm is what keeps you going, you know you have to do it and so you just move from one thing to the next, keeping her going and yourself.

The rhythm happens if we are sick, if she is sick, if Graham is sick. If we are grieving, if we are exhausted, if things are changing, if we’re totally over-loaded, or having an easy day it continues.

That’s the daily rhythm. There are others.

Each week she has therapy on Monday mornings and Wednesday afternoons. Each Sunday night I write an email to school about how her weekend was and letting them know what we expect for the week ahead. (When Grace will be out of school, who the nurse will be, if we expect her to be tired, etc.)

She gets an infusion and a shot every 28 days.

Fall and spring mean multiple trips to Minnesota for specialists that we are scheduled to see six months apart. Right now we are able to only have to see those docs twice a year and don’t have to schedule in the middle of winter. It usually means at least two trips to Minnesota and back each season. The docs only practice certain days. All in all to only be heading that way in two seasons is an awesome thing.

I have fed Grace in our bathroom while Graham is in the tub (I took a picture one night because it just seemed so strange yet normal to me in the moment) trying to keep the beat for both of them. I did this knowing ultimately someone would be off by the time it was all over, but trying my hardest to keep things on track.

I was away from the rhythm for a few days recently. Coming back to it feels demanding, un-relenting even. I thought more about how we are just keeping her going in completing these activities. There’s no fun with her in there – except for the snuggle at bedtime. Now that I’ve been home a few days it feels less that way. It is what it is. It keeps her going so we can snuggle, and read, and swing, etc.

We’ve been told that we make it all look easy. I’m never sure how to take that. Is it a compliment? Or is it a criticism that we aren’t as transparent about what it takes as we could be?

I guess it doesn’t matter. It is what it is. It’s how we work. Part of the rhythm of our family.

Joy