May 10, 2015 by Jolene

Awesome moms

Prepare yourself; this one’s going to get sappy.

It’s Mothers’ Day, and I’ve got to tell you: I know a lot of awesome moms. I see so many of you, loving your kids with everything you have, making sacrifices that often go unnoticed, juggling a millions things no one else thinks about, ending your days utterly exhausted, but knowing in your bones that they are worth it. I see the look in your eyes when you watch your kids enjoy life with abandon and when they make you proud. I see your pain when your kids are sick and hurting and you can’t fix it for them. I see you worry as your kids grow and make choices and take risks.

There is a lot of legitimate criticism out there about ways modern parents screw up. I see plenty of that, too. Moms (and dads, too, but their day’s in June) have a hard slog trying to figure out how to make the right decisions for our kids. How do you keep them safe while encouraging independence? How do you show them love as you demonstrate consequences? How do you teach them to love God and serve others in a world obsessed with self? How do you shelter them while preparing them to live out there? It’s really hard; sometimes it about breaks your heart. Sometimes the simultaneous mundanity and enormity of the job is enough to bury you alive. Sometimes you really screw up.

But I see so many of you, making mistakes, getting beaten down, but carrying on out of the immense, undeniable force of a mother’s love. You encourage me and make me feel less alone. You give me hope that there are good parents in this world, raising kids who will make us proud. You give me the confidence to be boldly unapologetic in doing my best for my kids.

Of all the awesome moms I know, three in particular deserve special mention.

One mom gave me life and raised me to be the person I am. It may be a cliche, but being a mother really has given me new eyes to see my own beautiful mom. How much better I understand all that she poured into my brother and me. I am forever grateful for all she gave and continues to give, and now I treasure our friendship more than ever. I know she’s missing her own mom this year, and it reminds me how precious our time together really is.
One mom loved a couple microscopic clusters of cells enough to give them a chance at life with someone else, and now she loves from a distance a little girl who calls me “mama.” Laurie sent me a bouquet of flowers this Mothers’ Day, and it meant more than I can say. It took two moms to make Lina, and don’t you think I’ll ever forget it. (I’m sorry, Laurie – I know Dan is probably rolling his eyes at us again!)
One mom came to me by marriage, a mother-in-law who makes it impossible to relate to all those mother-in-law jokes. I have an inkling it may not be easy to cede the role of “chief woman in your son’s life” to someone else, but she has shown me such love and grace, and she has become a second mother and friend. She is a remarkable woman, and this weekend, we had extra reason to be incredibly proud of her as she graduated with her BSN.

I’ll leave you with pictures from our graduation celebration.

May 6, 2015 by Jolene

2 and Under at GiGi’s Playhouse

I was asked a few months ago to be a new co-leader for the 2 and Under group at GiGi’s Playhouse. If you’re not familiar, GiGi’s Playhouse Down Syndrome Achievement Centers offer free educational and therapeutic programs for people with Down syndrome, their families and the community. These centers are amazing places, and we are so lucky to have one just a few minutes away.

The 2 and Under group is obviously for the really little ones. It’s a welcoming and supportive place for families who are perhaps still coming to terms with a diagnosis or who may have questions about early intervention, therapies, medical issues, and everyday kid stuff that comes up in those first years. It’s also a great opportunity just to connect and socialize with some really lovely people. A fantastic OT volunteers her time to help lead the group, and we sometimes bring in presenters to address various topics. Today, a physical therapist talked to the group about gross motor challenges for our kids and the importance of early therapy to help them develop healthy muscles and skills to build on as they grow. I love getting to be a part of this group, not the least because it means I get to play with some of the cutest itty bittys on the planet, even as Lina is rapidly leaving that stage behind.

I took the camera today and got permission from the parents to share some pictures of these precious kiddos. I’ll get to those shortly, but it would be an incomplete account if I didn’t disclose that for the duration of today’s session, Lina terrorized the room with an epic display of hair pulling. The minute we stepped in the door, I felt her little body tense, and it was downhill from there. I did joint compressions and tried to calm her, to no avail. She made the babies cry, she made the big kids cry, she yanked a mommy half-way to the ground. So, here’s my blanket apology to all the people Lina attempted to scalp today. That wasn’t exactly the warm and comforting environment GiGi’s aims to provide. We have a new OT lined up and are working on it, I promise.

A much more peaceful Lina at home

May 3, 2015 by Jolene

Spring Picnic at the Zoo

We joined something like 600 other people today for the Down Syndrome Association of Middle Tennessee Spring Picnic at the Zoo. We did this last year – only it was a summer picnic then, and a lot hotter! – and it was so fun to see how much more Lina got out of the experience this year. My in-laws were able to join us, the weather was absolutely perfect, and the kids had a blast. We talked with plenty of families we know and met a few new ones.

We feel so lucky to have a local organization that offers these kinds of opportunities. We have landed in an amazing community, and these events carry such a palpable sense of acceptance and celebration. (A sort-of actual conversation Jon had: “You’re worried your kid will pull my kid’s hair? Hey, me, too! Maybe they’ll really go at it and cure each other!”) Parents of older kids pass down advice about IEP meetings, we stop to coo over the tiny newest members, we celebrate the recovery of kids who spent time in the hospital, we dance to MC Hammer and Taylor Swift, the kids eat too many cookies, we notice kids who look like older or younger versions of ours, we juggle plates and messes and tired little ones. It’s real and it’s joyful.

Everyone should get to experience a community like this.

Note: I wish I could share more pictures of this amazing group, but I don’t have releases to publicly post photos of other families and wouldn’t feel comfortable doing so without permission.

Took a fall and just needed a little mama love

Compare this to last year’s carousel experience

April 23, 2015 by Jolene

Sneaking a peek

Today was Kindergarten Sneak-a-Peek at the local school where Corin will be attending come August. The parents and upcoming kindergartners met at a nearby park and boarded a bus for the ride to the school, where we heard from the principal and teachers and a handful of current kindergartners and then toured the classrooms, art room, library and gym.

Corin was SO excited. He asked about Sneak-a-Peek for weeks, and he was nearly beside himself by this morning. I wondered if he might get overwhelmed with so many people and so much to take in, but he did great. He was really pretty confident and self-assured, and he loved every minute of the event. Jon was able to go with us, and Lina enjoyed herself, too, so it was a win for everyone. I will say that one of us is looking forward to August more than the rest…

April 17, 2015 by Jolene

Thus begins transition

Jon and I attended Lina’s first school transition meeting yesterday. We drove down to the county administration building and met with Lina’s TEIS (Tennessee Early Intervention Services) coordinator and a school psychologist who took down initial information about Lina’s current progress, goals and needs. There wasn’t much new information at the meeting, since we’ve already talked quite a bit with the TEIS coordinator about the early childhood special education program. We got a few answers to questions, but the meeting mostly served as an official introduction to the school system and the kick-off for the transition process. From here, the wheels turn until her first day of preschool on September 14.

The next steps, as we understand them, are:

1. Soon – probably in the next few weeks – we will know for sure which school Lina will be assigned to. Early childhood preschools are not offered at every elementary school in the district. Our zoned elementary school is in a “swing zone,” meaning we could end up at either of two preschools, both of which are about 20 minutes away. There is also a chance the district will open a third program, which could potentially mean a closer option.

2. Sometime over the summer, Lina will be scheduled for a full evaluation, which will include motor, communication, social and cognitive assessments. These assessments will show where she is in her development and will be the basis for her qualification for special education services.

3. Once the assessments are complete, the school system will schedule our first IEP (Individualized Education Program) meeting. This will be the biggie, where we sit down with school administrators, teachers and therapists and outline very specific goals and strategies for Lina. We will be attending regular IEP meetings for the rest of Lina’s educational experience. The IEP is a critical tool for making sure she is receiving the support and resources she needs to reach her full educational potential.

4. In August, we will schedule a tour to see the preschool in action so we have a better idea exactly what to expect on Lina’s first day.

It was a pretty uneventful meeting. The most involved discussion we had was about cognitive testing, which some parents refuse out of distrust for the accuracy of the testing and a concern that an IQ score will result in limiting expectations. But really, it was pretty simple, and we were out of there in about 30 minutes. It’s funny, though; I still felt a bit like a wrung-out dish rag. Even when the logistics are straight-forward, a meeting like that requires a higher level of emotional energy. I think any parent who has been in a school meeting to discuss a challenge can probably relate. I have been to similar meetings with her current school or therapists, but this was the first one Jon was able to attend. He commented last night on how it was emotionally a little bit hard; I felt relieved to share that experience with him. He won’t be able to go to every school meeting, but we agreed it’s important for him to be involved whenever he can. I am hopeful the educational realm we are entering may make it a little easier for Jon to be involved in setting goals and knowing what we’re all working towards.

On a less serious note, I’ll share a few pictures from the last day of my cousin’s visit. We had such a good time with family we see too rarely, and we miss them now that they’re back home in Michigan.

Girl was fearless heading down the big slides.

Dirty and content

A boy and his dog

April 5, 2015 by Jolene

Easter

Easter has become one of my favorite holidays. We keep it pretty low-key, but the kids have such a great time, and we have had some fantastic conversations with Corin this week as we’ve read Bible verses about Jesus’ death and resurrection and talked about what it all really means. He understands so much more every year, and it’s such an amazing thing to watch him take it in.

As a big added bonus, my cousin and her kids are here visiting on spring break. The weather was really pleasant for this first Easter in the new house, so we got to do a real egg hunt in the back yard for the first time. And the final icing on the celebration: Lina’s donor family sent us a box of cascarones (confetti eggs) all the way from Texas. We’re still dropping bits of confetti around the house, like a little party that just keeps going.

It was a fun day.

Hard to believe that not long ago, this kid could hardly be bothered to look at a coloring book.

“Hey, Corin,” we said, “come take a picture hugging Lina.” She was pretty sure he was trying to strangle her, instead.

She’s coming for you, Chief.

March 31, 2015 by Jolene

Spring

This one’s mostly going to be photos – just bits and pieces of life at home with the arrival of spring. The kids are wearing Easter-season finery to church, the trees are in bloom and nature is feeling downright frisky. I know this because today, that big tom turkey made it in the back yard with one of the ladies he’s been courting for days. The kids were thankfully in school. (I can just hear the questions…)

Also, a male bluebird is obsessed with his reflection, meaning he is pecking at our reflective-coated windows beginning at 6 a.m. Ah, nature.

We’d just read Robin Hood, so he would only let me take his picture with his “bow.”

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First bonfire of the season

Being woken at 6 a.m. by a delusional bird (oh yeah, and the hundreds of dollars of vehicle damage caused by gnawing squirrels) aside, having this front row seat to spring has been a dream come true. Corin is now comfortable enough out there to take full advantage of the play opportunities. We have spent hours and hours outdoors, no badgering required. The hammock is hung, we’ve had a few bonfires, and Lina is improving at navigating the uneven terrain. I am so grateful.

March 26, 2015 by Jolene

School decisions in Reality Land

Things are getting all kinds of real around here.

Today, I pre-registered Corin for kindergarten at our local public school. (He now has a nap mat and official Scales Elementary canvas bag!) I also met with Lina’s TEIS (TN Early Intervention Services) coordinator for her six month review, in which we updated her therapy goals and discussed her transition to the public school system in September. (Kids under three who qualify for special ed receive therapies through the state early intervention system and then transition to the local school district on their third birthdays.)

I’m thankful to still have five months to prepare for the fall; it’s going to be something. In August, I will be putting my firstborn on the bus for his first taste of full-time school (and the first taste of public school for all of us – but that’s a different subject). A few weeks later, I will begin driving Lina nearly 20 minutes one-way for a four day/week, three hour/day preschool. In addition to her highly-qualified teacher, she will have speech, physical and occupational therapists in the classroom all day. Her class will be 50 percent special education preschoolers and 50 percent “peer models” (typically developing kids her age).

This may not sound like a big deal to a lot of parents, but to this “let little kids run free and learn by reading cereal boxes and digging in the dirt” mom, it really is. My instinct for as long as we’ve been thinking about the subject has been that the ideal early education for very young kids happens mostly in an unstructured home environment, with educated and engaged parents. I’ve read some pretty solid research along those lines, particularly related to the key role of play in early learning. I have concerns about increasing academic pressure on kindergartners, who are still at an age when a highly-structured environment can backfire.

But life is life, and we don’t dwell in the ideal. We live in our own complicated reality, as does every other family on the planet. We don’t make decisions based only on research and ideology; we make them based on our unique kids and our specific life circumstances.

That’s why my kids have been in a Mother’s Day Out program. It’s how two church school-educated parents moved to the other end of town, to a painfully expensive housing market, to access the best public schools in the region. It’s how a “less structure is better” mom is enrolling her five-year-old in a public kindergarten and her three-year-old in a four-day-a-week preschool. Jon and I have spent a lot of time wrestling with competing needs and priorities. We’re working to find the right balance of what’s best for the entire family. We’ve prayed a lot, researched a lot, talked a lot to other parents and therapists, and this is where we’ve landed. I am (mostly) at peace.

Just don’t ask me about it as I’m putting Corin on the bus in August or dropping Lina off at her classroom in September.

And, just for kicks, I will leave you with this gem of Corin dressed for Dr. Seuss day at pre-K. (That would be my belt as a tail and a hat I stapled and glued together this morning, between packing his lunch and combing his hair for school pictures.)

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March 24, 2015 by Jolene

Hair pulling, continued

Today, I dropped Lina off at Mother’s Day Out with more nervousness than I’ve felt since her first day there.

She was wearing a mini backpack, purchased at Toys R Us for $9 and loaded with two books weighing almost exactly two pounds. (I know, because I weighed them on the kitchen scale.) A textured ribbon was tied to the straps. She had calming essential oils massaged into the soles of her feet. I had quickly run through our sets of 10 joint compressions in the car before coming in. I’d forgotten the nubby chew tube I ordered to help with molar teething and oral sensory input, but we’ll remember next week. Just before I left, the program director took a drop-off picture to finish out the visual schedule they’ve been preparing for her.

ALL of this is an effort to address the chronic hair-pulling that has become such a pervasive problem every Tuesday. We’ve seen a resurgence everywhere, but it is by far the biggest problem at school. I observed for a half-hour or so from the window recently, and the other kids in the room were clearly terrified of her. They cried and held their hair every time she got close. It was awful.

Thankfully, this Mother’s Day Out program has a mission to include kids like Lina. They have a special education teacher on staff – not Lina’s classroom teacher, but available for support – and one of the program directors herself has two kids with special needs. They get where we’re coming from, and they are willing to work hard to address the problem. My sit-down with the director, special ed teacher and classroom teacher a couple weeks ago was really hard, but so constructive. I am hopeful that the plan we created together will help Lina work through this.

I don’t know what the report will be today. I don’t expect an immediate cure. I’m just hoping that we can find constructive ways for her to channel the frustration and sensory needs that she currently expresses by yanking the hair from innocent children’s heads. If anyone out there has experience with this, I am open to any and all suggestions.

March 21, 2015 by Jolene

Happy World Down Syndrome Day

It’s 3.21, which means we celebrate all the awesome people in the world who rock that third copy of the twenty-first chromosome!

If you’d like to join us in celebrating, we encourage you to visit Kelle Hampton’s blog and take the 3.21 pledge. Your donation goes toward funding grants for college students with Down syndrome. That’s right, I said college students. Read the blog – this is awesome stuff!

A Dash of the Unexpected

a story unfolding