Archives for posts with tag: special needs

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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86BA8EED-38DB-42A3-905C-85390F56C695When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves.   Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight.   Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways.   Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.

Joy

 

 

 

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

S4300599Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time.  In that time there was a comment made about the club of special needs motherhood.  Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed.  I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way.  When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community.  I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me.  This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard.  Even though I knew some disabilities were invisible I didn’t think about it much.  I do now.  I’ve learned to never compare – the same thing in two kids can look very different.  I’ve learned to reserve my judgment – you just never know what someone else is dealing with.  I’ve learned the power of empathy.  I’m reminded of the importance of laughter.  I’ve learned how to live in a continuous cycle of grief.  I’ve learned that to encourage sometimes all you have to do is smile.  Sometimes you send a text.  Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be.  I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate.  I’ve learned what it means to wait.  I’ve learned that what you say and how you say it really does count.  I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible.  In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with.  If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me.  I can’t imagine doing it alone.  Sharing life is such an important part of living it.

Joy

 

 

 

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