Friday, December 12, 2014

Firefly's new home therapy tool:

I saw this and became obsessed with it immediately. All special needs parents know that moment when we see or hear about something and think, "THIS!" This is a tool or strategy or help that can serve my child well.

For us, the Playpak by Firefly was that item.
(We also own the GoTo seat and Upsee, also made by Firefly. I'll include two shots of at the end of this post, but they really deserve features of their own, so those will come in due time.)

We can use it for tummy and back activities too, but the best help the Playpak offers Zoe is in sitting. All the pieces can be configured in different ways, depending on the child and the purpose. For example, I wanted to stretch her abductors in addition to working on sitting, so I used the orange piece to spread her legs into a prolonged static stretch (and also used on knee immoblizer we already had to keep her knee from bending up and out of the stretch).

Zoe doesn't sit independently yet, but her trunk control is pretty good and her core is growing stronger day by day. With so little stability on her own, sometimes sitting progress hits a plateau, and I'm confident the Playpak is going to be just the external stabilizer she needs as she learns to do more and more on her own.

Prior to her SDR surgery, the tightness in her hanstrings rotated her hips forward when sitting, causing her back to reflexively pull back. (Note: the blue therapy bench in several of these pictures is a different product, but I'll link to that below.)

Now that spasticity is gone, but her body has to un-learn that reflex as it gets strong enough to sit without support.

This is part ab workout system, part seating support system.

The best gift the Playpak gives Zoe? Independence. 

Thank you for that, Firefly.

(Even if we do use that independence for snacking during Barney.)

The Playpak isn't just for passive sitting, though. For this next series of play pictures, I used the strap instead of the larger curved piece so that Zoe could lean forward more.

All the pieces can be positioned as your child needs, using secure velcro.

How secure? Well, for the first time in Zoe's life with us, I left the room to do a couple things while she was sitting and playing.

I've never been able to do that before. She's never had the freedom to just sit and play with her sister, something most three year olds have been doing for quite some time.

THIS. This is a beautiful first, y'all.

Behind Zoe in the picture above, you can see a few pieces we weren't using this time. To give a little more flexible support, I used the orange piece behind her back, setting aside the small yellow support piece, and the yellow strap in front instead of the green curved piece. This time, we also didn't use the blue head pillow which is best for activities done when lying down.

She felt secure in playing without thinking too much about sitting, which is exactly how kids ought to feel.

The Playpak looks bright and fun and welcoming, so her sister wasn't intimidated by it at all. In other words, it's a help and not a barrier to playing with peers!

(Our sweet girls have no idea that every bedroom shared by three year old sisters isn't full of therapy equipment!)

Such precious smiles!

Such secure sitting!

Such fun play!

Now to the details: the Playpak includes a carrying case that doubles as a mat. Inside, the red horseshoe, green horseshoe, orange support piece, yellow support piece, yellow support strap, and blue head cushion are packed in the mat, which also includes loops for toys to be attached.

All of the pieces fit together

so they can be zipped and carried easily.

Seriously, the case is ultra light and easy to transport. I was skeptical about that. But, truly, this whole thing can be easily transported from place to place.

The outer part includes a few small pockets, and so far the manual is the only thing I regularly tuck in there. This booklet is helpful with lots of tips and illustrations, so I like to have it easily accessible.

And Firefly's slogan? It's not a gimmick; it's honest. What they make makes so much more possible for my girl.

To learn more about the Firefly products shown here...
About the Playpak ($449)
About the GoTo Seat ($265-299, depending on size, available in pink, green, and blue)
About the Upsee ($489, available in different sizes and colors)
To buy any of those products or others from Firefly

Other products...
LiteGait harness system (contact them for a quote)
LiteGait GaitKeeper Mini treadmill (contact them for a quote)
Kaye adjustable therapy bench (shop around for the best price; ours was $153 from Amazon)

Disclaimer: This Playpak was given to us from Firefly for review purposes, but my opinion is all my own and I gave no guarantees of a positive review. 

Thursday, December 11, 2014

Who told you this is what Christmas is for?

I hope I never get over the ridiculous grace of God becoming a baby, being born in the humblest of settings, and entering the mess our sin created in this world he created. What a love! What a gift! What absurdity!

That's what was on my mind yesterday afternoon, as we took our annual trip to Boyce Farms here in Raleigh to cut our own tree. I'll admit I prefer the variety behind us in that picture, but those trees grow in the western part of the state, and I'm not up for that drive just to cut a tree. So we go for the less showy varieties that will grow around here, as I try to remind myself that Christmas isn't about the photoshoot-ready magazine-suitable professional-looking trimmings.

It's about a God who wrapped himself in flesh to be the sacrifice we could never offer out of our own chaos. If you're looking for a blog about where to find that perfect garland or how to make a dozen kinds of cookies for gifts or 27 must-have decorations for a Happy Birthday, Jesus party... well, then click that little x to close this window, because this is not that kind of place.

We're a messy family. Patu's shoes were on the wrong feet, Zoe looked like she was drooling blood as she joyfully ate her candy cane, Philip said he didn't feel well and we dragged him out anyway and then he was diagnosed with pneumonia today because we're great parents or something like that, and... well, you get the picture. We're a party of eight, and our real world includes pictures like the one below in which one of our five year olds decided it would be hilarious to pretend he was pooping a tree.

Somehow I don't think that picture is going to end up on Pinterest, y'all. (Also, did I really just share that? Yes, yes, I did.) But somehow in all the tinsel and tradition and tree-trimming and twinkle lights, I keep finding myself forgetful that Christmas is all about mess.

When my daughter doesn't offer the smile I was hoping for as she "helped" Daddy with the saw, I often fail to remember that another Father made a plan to rescue his disobedient children before time even began.

As we hunt for the perfect tree to grace our family room, I can easily lose sight of the grace available each moment for all my imperfections.

As my precious ones point out tree after tree with exclamations, "What about this one!," my mind jumps to the bare patches or odd shapes of each one without pausing to grieve my loss of the childhood faith they still hold.

In their eyes, Christmas is full of magic,

not the false kind written about in novels and playing out on the big screen

but a truly magical plan of redemption, drafted by the all-knowing one who could foresee our failing before they bit into the forbidden fruit.

Genesis 3:11 holds the most convicting question in all of scripture, in my opinion. Do you remember what God asks them?
"Who told you that you were naked?"

When I say I'm following the Christ child but spend more time seeking the sparkles than the sacred, I hear, "Who told you this is what Christmas is for?"

An infant who entered the world in a stable full of dirt and animals and more manure than our modern nativity scenes show grew into a man who died defeat sin with a blade but with his own death.

To a world that was lost, love came down and put on skin.

(Did you see the lost one in the picture above? It's like "Where's Waldo?" Patu edition.)

Christmas isn't about the perfect tree or the perfect Advent devotional or the perfect matching pajamas or the perfect wrapping job or any of the other worldly perfections we strive for.

Christmas is about our imperfect world being interrupted by the only child who could lead us out of our darkness and into his light.

As we enter these last days before the beauty of a newborn king breaks forth from this season of waiting, I know I'll be distracted at least a dozen times more by the shiny, the sparkly, and even the sin of this world, bogging myself down with all the wrong trappings.

"Who told you this is what Christmas is for?"

I'm the one, along with my husband, who will tell them what Christmas is for. And as every parent knows, they are listening more closely to what my actions say than to what I share during our dinnertime Bible stories.

As they're listening to me, I hope they'll hear what Christmas is truly for.

I pray their eyes will see a mother who loves the Lord more than she loves finding this year's perfect tree.

And just as they rest in the arms of their Daddy, I'm gladly burying myself in my Father so that they will see more of him and less of me.
And the angel said to her, “Do not be afraid, Mary, for you have found favor with God. And behold, you will conceive in your womb and bear a son, and you shall call his name Jesus. He will be great and will be called the Son of the Most High. And the Lord God will give to him the throne of his father David, and he will reign over the house of Jacob forever, and of his kingdom there will be no end.”

And Mary said to the angel, “How will this be, since I am a virgin?”

And the angel answered her, “The Holy Spirit will come upon you, and the power of the Most High will overshadow you; therefore the child to be born will be called holy—the Son of God. And behold, your relative Elizabeth in her old age has also conceived a son, and this is the sixth month with her who was called barren. For nothing will be impossible with God.”

(Luke 1:30-37 ESV)

Monday, November 24, 2014

our first second

This has been a year of firsts. On October 14, 2013, we were first together as a family of 8. A few weeks later, we were first recognized legally as a family by the high court in Uganda. And one year and two days ago, we landed on US soil, for the first time for our newest three. Since then here's a sampling of more firsts we've shared:

  • first time in a car seat
  • first Thanksgiving
  • first birthday party of a friend, at which Patience whispered to me with alarm, "Mommy, why they put fire on the cake!?!"
  • first Christmas with a tree and stocking and gifts and such
  • first birthday celebrations as a family followed by first birthday parties with friends
  • first tacos, pizza, hamburgers, hot dogs, Sprite, and more
  • first Easter
  • first 4th of July
  • first days of school for most of them
  • first trip to the state fair

And now as Thanksgiving rolls around, we're experiencing our first second as a family of eight. Instead of choruses of "what's this?" and "why we do that?" they're asking, "Are we having turkey again this year?" and "Who is going to join us?"

(Side note, local friends: If you don't have anyone to celebrate with, there's a spot at our table for you on Thursday. Seriously.)

Instead of firsts, they know traditions. They know family. They know what it is to be Dingles.

When we took our family pictures, we tried to move the tombstone from the background but it wasn't budging. Our photographer offered to edit it out, but I said no. In so many ways, our family is marked with great losses mix in with great gains, and it just felt right to have a symbol of brokenness in the background of our present beauty. We were their first second, as in their first second family. In a perfect world, their first would have been their only, and as we rejoice in our firsts and in this transition into our seconds as a family now, we don't forget the pain interwoven with our joys.

Unlike this second Thanksgiving, though, which will be followed by a third and a fourth and so on, they won't have a third family. They're secure now. We're stable. One year, one month, and a couple weeks after they first met us, we're familiar to them now.

And we're thankful.

Friday, November 21, 2014

when unexpected grief hits in special needs parenting {part 2: preschool edition}

The start of special education preschool is looming for Zoe, and I'm feeling an unexpected sadness. Yes, some of it is the same bittersweet brooding that came with sending our oldest four to school for the first time, but that's not all of it. This feeling, my friends, is that special needs parenting grief I wrote about yesterday.

Let me start with a little context...
  1. None of our other children have gone to preschool: for Jocelyn, home was the best place for her learning and for me since she was my first and I was soooooooooooo not ready for her to start school. for Patience, she wasn't in our family through the preschool years. for Robbie, his epilepsy wasn't controlled enough for preschool plus we were spending part of fall in Uganda. for Philip, he joined our family no long before he turned 5 and our focus was on family attachment. for Patu, she's 3 now, and Lee and I have always said that if we do preschool, we'd wait until age 4. Meanwhile, Zoe just turned 3. She won't enter kindergarten until the fall of 2017, which means she'll have almost 3 full years of preschool.
  2. By federal law, kids with disabilities are guaranteed educational services from birth through age 21 if they have need for that support. Until a child turns 3, those services are usually through an early intervention program in which supports (usually a physical therapist or speech therapist or occupational therapist or feeding therapist or developmental therapist or some combo of those) come to the child's natural environment, which was home for us but can be a daycare center or somewhere else for other kids. At age three, services transition from meeting IFSP (Individual Family Service Plan) goals through early intervention to addressing IEP (Individual Education Plan) goals through the local public school system. Zoe is 3, so that's the transition we're in right now, with a slight delay in her start due to recovery from her surgery. For preschoolers with IEPs as extensive as Zoe's is, placements in our school system are usually in a part-day class for 2.75 hours Monday through Thursday or in a full-day class for 6.5 hours Monday through Friday. Technically, Zoe's IEP is for a part-day class, but the school that's the best environment for her is a full-day program, so she'll start half days Monday through Friday for this year and then probably move to full days or close to it in the fall. 
In other words, preschool hasn't been a given in my book for my other children. Furthermore, when we did consider and tour some preschools for Jocelyn before deciding not to go that route, I felt a sense of agency I don't feel this time around. I could say yes or no. I could pick anything I wanted for her. The options were wide open for which days, which hours, and which environments for her early education.

This time, we know Zoe will benefit from special education preschool, so that's not the struggle for me. Instead, my conflict stems from feeling like my social and opinionated yet immobile and largely nonverbal kid might not be understood by her teachers or classmates. We see a beautiful, spunky, bright girl when we look at Zoe, but most of the world sees a wheelchair for movement and an iPad for communication and assume that she is less than. She is not. 

For early intervention in our home, I could be there to protect her and help everyone see her just like we do. For schooling outside of our home, I can't. That lack of control definitely contributes to my sadness.

(Friends, please stop yourself if you're tempted to comment, "Oh, I felt just like that when my typically developing kid went to school, so this is normal." No. I know what you felt because I felt that too with my other four who are in school. Comments like the example I just gave can be hurtful because (a) those words minimize the extra challenges special needs present and (b) remarks that minimize our realities dismiss us and our emotions. Yes, what I'm feeling is similar to what parents of typical kids feel when their darlings start school, but there's an extra layer... and that layer feels particularly heavy to me right now. No, while there are some similarities, it's not the same.)

I know some of my grief flows from our experience at our first pick school. We went there, we met the director of the center, we met the coordinator of the program, we took a tour, and all was well. They called to schedule a new parent orientation and a new student home visit, and while we postponed putting those on the calender until after her IEP was finalized, everything was perfect and positive and progressing. Until the people at that center who I had talked to in detail about Zoe, who had met her, who knew exactly what her strengths and weaknesses and needs were, changed their minds and, instead of having the decency to communicate their decision to me after all our prior communication, made the director of preschool special ed services do so. Basically, they didn't want to accommodate a child in a wheelchair, and they weren't adult enough to tell me that themselves, instead choosing to hide behind someone else who broke their bad news to me. Because they are a private center that contracts with the district to provide a few spots for kids with IEPs, what they did is completely legal. 

And I was left feeling like they saw my girl as less than. She is not.

Obviously if that's their attitude, then they aren't the right place for us anyway. (And not that I'll ever do it, but I'm cheering myself up a bit with an image of pulling a Pretty Woman "big mistake!" moment of bringing Zoe by someday to show them what they missed out on.) 

This round of grief is a little about the lack of choices we get for preschool for Zoe as compared to what I had for Jocelyn but it's even more about my sadness for a world who views my girl and others with special needs as less than. They are not. 

Sometimes the grief of special needs parents is about what our kids can't do or won't ever do, like I shared yesterday. Other times, like now, we grieve for all the people who miss out on how absolutely amazing our kids are. They are so much more than diagnoses and labels, so much more than medications and equipment, so much more than differences and IEPs. Zoe is clever, and she has a wicked sense of humor, and she loves Barney, and she can belt out parts of Let It Go, and she adores her older siblings... and she also has cerebral palsy. I'm saddened because some people will fixate on the last characteristic in that list and then choose to miss out on all the rest. 

She prays with her sisters after school, and she loves all primates, and she demands to be in the middle of all the activity in our home. Zoe is so much more than cerebral palsy. She is.