June 21, 2015 by Jolene

On the man in our lives

It was another full weekend, with a celebration of our 13th anniversary (which is actually this coming Tuesday), and of course, Father’s Day today.

I’d love to be able to take credit for picking the man who has made such a remarkable husband for 13 years and a truly show-stopping dad for a little over five. But really, I’m not sure how much credit I deserve. I was a very young – and as a result, fairly ignorant – 18-year-old when we first started dating. I was a still very young – and still fairly ignorant – 23-year-old when we got married. A lot of those kinds of relationships don’t last, for good reason. Who really knows at 18 what they want from life or what kind of person they will become? When you start married life at 23, there is still a lot of growing and changing to do. How do you know you will continue to share the same values and want the same things from life?

The truth is, we didn’t. After five years of dating, we knew each other well, and we understood each other’s characters. But in the end, we took a gamble. To varying extents, marriage is always a gamble. We gamble that the person we’re marrying is who we think they are. We gamble that we are ourselves who we think we are. We gamble that the character and values we share with our spouse will remain constant enough to allow us to continue on the same life path together.

I was confident in my decision at 23, but Jon has surprised me. We have our daily frustrations, same as any couple. Sometimes, I mutter about murdering him in his sleep as I clip in the car seat he left sitting out. But as a husband and father, he has blown me away. In his steadiness and patience, in the depth of his love for me and our kids, in his wisdom and spiritual depth, in his incredibly hard work, he has far surpassed anything I imagined when we said our vows. Life has thrown us some surprises and will probably throw us a few more. But I believe deep down to the soles of my feet that God knew every twist and turn, and He brought us to each other, to lighten the load when it’s heavy and to multiply the many joys as they come. The gamble isn’t so scary that way.

Jon still makes me laugh. We still enjoy each other’s company above any other. And my kids are blessed beyond measure with a dad who is not only perfectly capable of caring for them, but who truly loves to do it. When I left them with daddy for five days last weekend, he looked forward to the time. I came home to kids who clearly thrived while I was away and a daddy who lit up when he told me about the fun they’d had together. He came away with a little better appreciation for what I juggle every day, but he loved that uninterrupted time with his kids, and they loved it, too.

That’s the man who has so surpassed my 23-year-old expectations. That’s the only guy who could live up to the very high bar my daddy set. That’s my husband, and the father of my children.

After all that, I’ll leave you with a few pics from our night on the town.

Goofy mirror selfie on our way out the door to dinner

June 19, 2015 by Jolene

If you’re going to San Francisco…

This week, I am coming off a fantastic long weekend in San Francisco with my best friend. Re-entry into real life has been rather rude (especially after that flight delay that got me home at 2:30 a.m.), but I have memories of our resort stay, city excursions and Napa Valley tour to sustain me. I won’t bore you with all our travel details but will share a few pictures and just say that I’m pretty lucky to have spent several fabulous days with a lovely friend who goes all the way back to high school, knows all my secrets and loves me anyway. I miss you already, Lila!

(All pictures taken with an iPhone – no digital SLR on this trip!)

Our historic cottage at Cavallo Point, at the foot of the Golden Gate Bridge, directly across the bay from San Francisco

A few of the famed “painted ladies” seen on our Victorian homes walking tour

Stained glass skylight inside a restored Victorian home, now a hotel

From the Golden Gate Park rose garden

Japanese gardens

From our walk back across the Golden Gate Bridge

Seen from across the bay, in Sausalito

Fabulous weekly farmer’s market at the ferry building in San Fran

Inside the ferry building

Chinatown, obviously

Ferry that took us from the city across the bay to Sausalito, where our resort was located

Alcatraz as seen from the ferry

Sausalito

Napa Valley train ride

Castello di Amorosa winery tour

Views from the castle

Roses and grape vines at another winery along the way

Our resort (partial view on far left, red roofs), the marina and bay as seen from our hike Monday morning

May 27, 2015 by Jolene

This speeding train

Lina seems to be going through another developmental jump, adding new signs and a few spoken words to her vocabulary, following through on more pretend play, stacking eight-plus blocks (and carefully turning them to make sure they line up properly), answering questions with “yes” or “no,” initiating friendly interactions with family, friends and strangers… You can tell she is taking in so much and understanding more of her world all the time.

We’re also seeing an improvement in her hair pulling, although it’s still very much a work in progress. The new occupational therapist did a full sensory evaluation and had me keep a detailed behavior log for several days. We learned that Lina has some challenges with transitions (meaning any time we change activities or locations) but is within the normal range on all sensory processing. The take-away is that at this point, the hair pulling is mostly behavioral. Lina’s receptive language skills are well ahead of her expressive communication, which creates frustration. She doesn’t always know how to interact and communicate with other kids and adults, and she may not know how to say that she’s overwhelmed or tired. The OT and speech therapist are helping us work through these issues. As the hair pulling eases a bit, we’re finding that a lot of the behavioral challenges we face would probably look pretty familiar to any parent of a strong-willed two-year-old.

We also learned after an initial evaluation at Vanderbilt last week that Lina qualifies for the KidTalk study. The Vanderbilt KidTalk program conducts research studies on communication intervention for preschoolers with Down syndrome (and also separate studies for preschoolers and school-aged children with autism). We’d been on a waiting list for a few months, and they called us a couple weeks ago with an opening in the current study. Lina was randomized to the intervention (rather than the control) group. This is very exciting, because it means she has immediate access to free communication interventions four times/week for approximately five months. We’ve heard great things about KidTalk and are hopeful this will push her progress over the summer and heading into her first weeks of preschool.

Of course, you can imagine what it looks like trying to fit four new therapy sessions per week into an already busy schedule. These sessions added to her existing early intervention, speech, OT and PT appointments mean Lina will be receiving six to eight sessions per week. The KidTalk study will also involve driving to Vanderbilt every six weeks for evaluations (some of which require three separate appointments) to measure progress. Those evaluations will continue for several months after the interventions are finished. Juggling the family schedule has started to feel like an Olympic sport.

Lately, I feel like someone hit the high-speed button on my life; this train is whipping around the tracks at 100 mph, and I can’t figure out how to slow it down. I had dreams of enrolling the kids is swimming lessons this summer. I want to have friends over on the weekends to cook out. I want to have play dates and spontaneously decide on a zoo outing or a day at the park. These are the last few months before Corin starts school for real, and I crave time to enjoy my kids. I don’t know where to find it.

This isn’t my usual kind of post. I try to keep a positive perspective, because I know how blessed I am. I truly am so grateful for my family and the life we have. I always feel the urge to disclaimer: I know there are so many people out there with problems WAY bigger than mine. But right now, I’m having a hard time finding balance. I don’t want off the train; I’d just like to be able to slow it down a bit, to take in the scenery and enjoy the ride. My guess is that’s pretty much what we all want.

I’ve decided I’m going to have to start carving time out where I can. I’ve got a very fun trip to San Francisco with a dear friend in a couple weeks, and that’s keeping me going for now. I’m probably going to have to start saying no to more event invitations. (Friends, listen up: If I decline an invite, please don’t be hurt. And please don’t stop inviting us! We want to see you; just know we’re juggling a lot and trying to find some sanity to the pace of life around here.) We’re going to have to be mindful in setting priorities.

In the meantime, I am so very grateful for the times we do get to relax, like our recent camping trip and moments when I can sit and type a blog post (while ignoring the never-ending piles of unfolded laundry). I am so grateful for understanding friends who offer a listening ear, and for family who pitch in wherever they can while managing their own busy lives. (Corin is staying with my parents this entire week – his longest stay away from home!) I am so grateful for a remarkable husband who is crazy about his family. Above all, I’m so thankful for a God who gives me the strength I need, even as I struggle to find time to make Him the priority He has to be. I pray that somehow, amidst all my busyness, He can use me to to really, truly touch the lives of people around me. I don’t know how to do it, but it has to be the overarching purpose of this crazy life. That’s something I’ve been thinking a lot about, and maybe there’s another blog post there. For now, I need the reminder that in this train analogy, I’m not the conductor. Thank God, He is.

May 13, 2015 by Jolene

On to the next thing

Yesterday was Corin’s last day of preschool. He was a little sad, but he mostly seems excited about moving on to kindergarten. His teachers made him an awesome yearbook binder of photos and art projects from the year. It was so fun to see his progress since last August. Tomorrow is technically the last day of school and graduation, but we’re skipping in favor of a four-day camping trip in Virginia. I figure he’ll have plenty more graduations in his life. For now, I’ll just feel a little nostalgic over the passing of this milestone, and then it’s on to the next thing.

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Best preschool teachers ever

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Awesome classroom assistant

Yesterday was also Lina’s last day at Mother’s Day Out. We’re taking the summer off, and then it’s on to the early childhood preschool in September.

Of course, by taking the summer off, I mean we’ll be running around to various therapy appointments every week, in addition to potentially being enrolled in a Vanderbilt research study that would involve four appointments a week plus periodic visits to Vandy for progress evaluations. We won’t exactly be kicking back and taking it easy.

We’ll also be working very, very hard on the sensory issues at the root of Lina’s hair pulling. We had our first visit with a new OT on Monday, and I am very hopeful she will really be able to help. It will take some time, but I think we could be in a much better place in a few weeks. I can’t tell you how much I need that to be true. We stopped at one of our favorite farmer’s markets yesterday afternoon, and the kids had a great time on the playground. Lina loves the playground, but it is exhausting trying to police her every move. No matter how fast I am, I can’t entirely prevent her from pulling hair. Parents have been so understanding, but what can you really say when your child comes away with a handful of another kid’s hair? Her aggression has spread to pinching and hitting. She is clearly so frustrated and anxious; I think soon we’ll have a much better handle on why and how to help.

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

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.

A Dash of the Unexpected

a story unfolding

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