Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Sunday, September 17, 2017

The magic of kindergarten

Lauren is officially a kindergartener. School started about 2 weeks ago. She is LOVING it! And Greg and I both feel like she's made huge gains since starting. She can count to 10 flawlessly, her ABC's are getting so much better, she can draw a person with a face, she can trace "Lauren" really well independently. And her speech is getting better by the day.

I really love her teacher, I get pictures and updates every day.

Look at this genius!

We'd always just worked on tracing "Lo", it didn't even occur to me that she'd be capable of this yet. And that person?!

Life is going well on the Tenex as well. She's still Lauren (and thus very mischievous), but her meltdowns are far and few between and she's less aggressive with me. We started with 1/4 tablet twice a day and it went well for the first week. Then she was lashing out (hitting, pinching, screaming at me). So we increased her to 1/2 tablet in the morning and 1/4 tablet after school. Her teacher hasn't noticed any tiredness at school and we haven't at home either. Ryan had a soccer game Saturday morning and Greg was sleeping after working all night. So I was on my own with both kids at soccer. Normally, my anxiety would be through the roof for this and I'd need to recruit help. (Partly because of my anxiety and largely due to Lauren's behavior). She was great! She never ran from me, she didn't have any meltdowns even when we had to do a last minute field change before the game started. She didn't argue about sitting in her adaptive stroller. She had to go potty, and she told me she had to go, then actually made it to the port-a-potty (ew). She talked nonstop through the game and wanted me to pay attention to her, but she's also developmentally overall more like a 3 year old so not unexpected. She was seriously angelic compared to how she would've been a month ago. I really do feel like this medication has allowed Lauren's personality to shine through instead of her behavior taking over her.

Ryan is doing great at his new school! We had his open house, got to meet his teacher, and saw his classroom. I had a chance to talk with his teacher about his sensory/feeding issues. I really debated even telling her because he's come so far, but I want to give him the best chance possible to succeed and I wanted his teacher to be on his side. She seems really nice! They have wobble seats in the classroom, which is great because he struggles a lot with staying still. He wears a bracelet he's obsessed with and he constantly opens/closes the clasp, I don't know if it's a fidget-spinner kind of thing for him or if it's anxiety, I could see it either way for him. I think maybe the wobble seat might help him a little if it's sensory. I also really am hoping we can work our way up to buying lunch on pizza day once this year, but so far Ryan is not on board with this. It sounds like he got picked on a little bit about his Titanic obsession because he told us he's trying not to talk about it so much because the other kids at school don't want to hear about it. I'm hoping it was a friend who kindly told him that he'd rather talk about something else. Either way, Ryan wasn't upset at all, so even if it was in a teasing way he didn't get his feelings hurt. I told him that he can always talk to me and his dad about the Titanic as much as he wants (I may regret this). He apparently found a girl on his bus who also loves the Titanic!

The school year is well underway and going well!

Sunday, September 3, 2017

Behavior win! And Ryan is amazing.

Yesterday was one of those great family days that feels like everything goes right. Don't you just love those day?!

We woke up, I took Lauren to McDonalds' drive-thru to get her a sausage burrito and Ryan pancakes. We brought Monte along because he loves car rides.

Then we all got ready (and Greg woke up since he worked the night before) and drove an hour away to a museum with a Titanic exhibit. It was AWESOME! Ryan is really obsessed with into the Titanic currently. Monte hadn't worked in a while, so it was great for him to get the physical AND mental exercise. (Our nanny said she can always tell when Monte hasn't worked in a while because he's crazier than usual) Then we went to a restaurant that magically had an arcade attached (we weren't familiar with the area and had no clue). Then we stopped at my parents house. It was awesome!

The best part? We had this whole long day full of driving, walking (minimal walking on Lauren's part, I'll get to that), sensory overload (namely the arcade), etc. And only one meltdown! Let me say that again. ONLY ONE MELTDOWN!!!! It was at the arcade and it wasn't super involved. And it only lasted maybe 2 minutes. I think she tripped and fell or something, because I found her huddled in the pedal part of a car-racing game crying. I had to drag her out of there, but she calmed down pretty quickly. We just returned to our table, hugged, she petted Monte. That's it, meltdown over. What?!

She was a little whiny at the Titanic exhibit but loved the rest of the museum. The Titanic part was all real artifacts in display cases. You couldn't even touch the cases without alarms sounding. Mix that with a very impulsive five year old. Yep, we made Lauren sit in her wheelchair the majority of the time. She convinced me she wanted to get out a couple of times (clearly I am insane because each time I expected it to go differently). She was really good though! Minimal complaining. There was a huge "iceberg" actually made of us that the kids got to touch. Monte was thrilled to be with Lauren. He's trained to walk ahead of me by a couple feet so he can be directly next to Lauren in her chair. At one point he just leaned over and rested his huge head in her lap. It was really sweet. Ryan absolutely loved the whole thing. And after the Titanic exhibit there was a kids play area with an ambulance the kids could "drive". Then there was an autoworker exhibit.

It was such an awesome day. I'm not sure if it is maybe our behavior medicine kicking in, or the fact that we had Monte with us, or a combination of both. But the stars aligned yesterday and it was amazing. Our whole lives generally revolve around Lauren's behavior, so it was really awesome to have such a great day. The day before my twin sister and I attempted Costco with Lauren...sans Monte because I couldn't find his pack. If you happened to be at our Costco and saw two adult women attempting to wrangle an angry and very flexible five year old into a ridiculously tall shopping cart, it wasn't us. Nope, no sirree. Not us.


As a side note, anyone that knows our Ryan in real life knows he is seriously such a great kid. He's also a little quirky and speaks like an adult. It's been my favorite thing about him since he was two years old and started talking. It used to be scripting from Thomas the Train, and hearing a little kid use correct train terminology was hilarious. Here's a few snippets from our museum visit yesterday:

-Oh, so they excluded the other half (of the 3D model of the ship, so you could see the inside)
-I'm concerned it's not safe. Have you checked the data? (He initially thought we were getting on an actual ship made to be a replica of the Titanic)
-I am not getting in a submarine. I don't have enough bravery.
-I think it took a million blueprints to build the Titanic


Wednesday, August 30, 2017

Summer is coming to an end

School starts back up in 6 days. Hallelujah! My kids thrive on structure and are both getting sick of being home all day. It's a new school for both of them, so Ryan has some first day jitters for sure. I don't think Lauren really gets that it's a new school for her. One of her friends (at least one) from preschool is in her kindergarten class so I'm super happy about that!

We spent last weekend with Greg's parents up north at Torch Lake. We had such a great time! I was so worried about Lauren - how she'd behave, if she'd escape, how she'd sleep, etc. She did mostly great. She slept just fine, though every time I sleep with her now makes me hopeful that her upcoming tonsillectomy will help her. She's not had a sleep study but clearly has sleep apnea. She moves around a ton, snores, and gasps for breath in her sleep. October 5th can't come soon enough, though I am really not looking forward to surgery and recovery for her.

Anyways, we spent the weekend on the boat, having campfires, playing games, and walking around town. It was just what we needed! Lauren did great, she couldn't escape from the camper. She was a little tricky behavior wise just because she has no awareness of danger (ie getting on/off the boat, crossing the street, wandering away, walking to the bathroom). We went out to breakfast one day and she had to go potty. I had to hold her by the shoulders and literally steer her toward the bathroom because she just walks in whatever direction she's pointed regardless of what/who is in her way. Not so safe in a crowded restaurant! I'm pretty sure her foot was hurting too, we did some walking and it was clearly difficult for her. I'm rethinking waiting until spring for her surgery. There really isn't a good time for me to take more time off of work (she'll be 6 weeks non weight bearing). Life is stressful!

Anyways, I took a few pictures of our amazing weekend! It was my first time at Torch Lake and it really is as beautiful as they say.







The kids had a great time up north, walking around the campground, going on the boat, swimming in the lake, and just being kids! Ryan wasn't thrilled with the walking, but did super great and loved going for rides in the quad runner! It was a great trip and we can't wait for next summer so we can go again!

Sunday, August 13, 2017

Church and the special needs community

We began attending a new church about a month ago. I was really looking for a church that I felt embraced us not only as members of the church, but specifically as a special needs family. I can't speak for every special needs family, obviously, but at least in my opinion and experience, special needs families need to be supported in a unique way by the church family.

Our new church does more than support this unique subset of families. They embrace us. They have an active special needs ministry. They have both a buddy program (where a child with special needs attends kids' church with their same aged peers with an adult buddy to partner with them and help them be successful). This is an awesome option! It did not work for our family at our previous church, however. Our new church has a special needs suite. It's essentially a self contained classroom. There is a quiet room, with dim lighting and soft couches. There is an activity room with a sensory swing, a canoe pillow, all kinds of toys. There's another room where there's a TV where kids can watch the bible story video and sing songs. They have a good amount of your typical kid toys- books, trucks, etc. We have chosen to have Lauren in the self contained classroom. She has thrived! She LOVES the sensory swing. She participates with the songs they sing and the activities they do. They have the staffing to work with each child individually. If a child is struggling that day and spends the whole day in the quiet room, or in the canoe pillow, or whatever- that child will see a bible. They offer a (free!) monthly respite night for 3 hours on a Friday that's available for both the child with special needs and siblings. Any special needs family will tell you that respite is vital to the survival of the family unit.

Our old church tried really hard to make inclusion work, and for most kids this worked really well. For Lauren, it often did not. She liked it well enough, don't get me wrong. But she was often very overwhelmed by the large group activity. It was too loud, too big, too crowded, too everything. And those things make Lauren shut down. I feel so at peace now knowing she's in an environment that's made for kids like her.

There's a great slogan in the special needs community, Down syndrome in particular. "More alike than different". In many ways, this is true for Lauren. She has thoughts, feelings, ideas. She feels every emotion possible. She wants to have fun, she loves baby dolls, she loves to go for bike rides. But in a lot of ways, she is not more alike than different. Sometimes she's just different. And that's okay. I'm so thankful we have a church that is able to make this kind of program a possibility for kids like Lauren that just can't be successful in a typical Sunday school classroom.

We'd been going for about 3 weeks when I emailed and asked if we could bring Monte to church. I explained that sometimes I'm the only adult bringing the kids due to Greg's work schedule. And Lauren's elopement is a concern for us. I emailed to ask about Lauren's service dog because I wasn't quite sure who to ask in person. I received an email back almost instantly saying he was welcome to attend with us. So today we tried it for the first time! It made our walk from the parking lot to the door a million times easier. Then again at the check-in kiosk where I type in our name and get the kids' security stickers. Then after service once I collected Lauren from her room, the walk down to the indoor playscape where the kids play after service. And then from there, back to the car. This was infinitely easier knowing I wasn't going to have to chase Lauren down. He sat in service with me, and did fairly well. When the congregation stood, he stood too which totally cracked me up!

Here's Monte with me during worship

Church is a trigger for Lauren's elopement. I'm not totally sure why. Part of it is likely that we like larger churches. Open spaces tend to make her realize that she actually has somewhere to run. And loud/bright/sensory things can overwhelm her and make her run. And when she's successful and I catch her, she's almost always really sorry. She tells me, "I'm sorry mommy. I won't do that again. I promise. I won't run away. I stay with mom." She just can't help it. Sometimes I think she can help it and just doesn't make a good choice. But sometimes she truly just can't control that impulse. And unfortunately, it takes one second for an impulse to become a tragedy. The times she has successfully eloped in public make me lie awake at night and think of all the horrible things that could happen to her. She could get lost and find water and drown. She has no fear of water and lacks the ability to realize basic safety awareness. She could run into a parking lot and get hit by a car. She could run out of sight and get kidnapped, and truthfully, she'd probably go with just about anybody.

A good friend recently bought me a book called Bless My Special Child. It's a religious book, and it has prayers for parents to pray when this life makes us grow weary. There's another section for how the Church can lift up and support these parents on their unique journey. Parenting a child with special needs can be incredibly lonely. It's very easy to feel judged, which leads to parents and families isolating themselves (I know this well and it's something I struggle with daily). Sometimes going to the grocery store can just feel like borrowing trouble and thus, not worth it. Church can feel a million times worse.

The speaker at church today was a woman who works with the organization Young Life and is also a member of the church. She volunteers in the class for adults with developmental disabilities. She started a teen group for teenagers with developmental disabilities. (She also really loves dogs, so obviously we need to be best friends). This is a church that gets it. This is truly invaluable. The Lord made each of us in his image and it's really wonderful to know that our church includes Lauren in that passage. She is beautifully and wonderfully made.

Saturday, July 29, 2017

Rebirth

September 26th, 2011.

This day will always be reflected upon as a day of rebirth for me. A day of growth, of expanded horizons. A day of changed expectations and the beginning of a future unknown. Embarking on a journey is always a gamble, but usually you can see where your feet might land. This day is my line in the sand, forever marking before and after.

I couldn't see the ground in front of me. I couldn't see even one minute in the future. This was a day that began a blind journey into an unknown land. Holland, if you will.

This is the day we found out our unborn baby had Down syndrome. It was so terrifying and a day of total unknowns. It marked the start of a journey that would lead us down a road full of both valleys and indescribable joy.

We could never have know where we'd land six years later. Or rather, that we'd never quite land. This journey is always evolving, always growing, and always teaching.

We could never have known she'd bring us such joy. Or that she'd be so full of love. We could've never guess she'd mend our family where we didn't even know we were broken. On this walk of life our valleys are deep. But our mountains are so, so high. We're often taken onto an unbeaten path where we might not quite know where we're headed, but it's probably going to be breathtaking.

She's changed me as a person. She's molded my outlook on life. Through her I've learned patience. Unconditional love. I have learned perseverance. I've learned that judging another person either for their behavior or their choices leaves no room for compassion or love. I've learned to accept help when it's offered and ask for it when it's needed. I've learned that the world won't end if I admit that I'm drowning (still a work in progress). I've met people both in person and through technology that I'd never have known otherwise. Because of her, I'm fortunate to work in a place that values diversity and celebrates the strength of each person individually.

Make no mistake, it is not easy. It can be hard to admit sometimes that this is hard. In all honesty, this is not a journey I would've chosen for myself. I don't believe that "God doesn't give you anything you can't handle". This life can be very hard sometimes and I don't think there is anything shameful in admitting it. It can be lonely. Exhausting. Frustrating. But the rewards are immeasurable. It is always worth it.

Her times of elopement, her tantrums that are far past chronologically age appropriate, her extremely stubborn nature, her impulsiveness. These would try the patience of a saint! But her unending I love you's, her enthusiastic thumbs up or thumbs down responses, her thirst for knowledge, her no quit attitude. Her squinty-eyed smile. Her hypotonia-induced, body-melting hugs. Her willingness to try. Knowing how hard she works for every small gain and seeing her take such pride in her accomplishments. These make everything so gratifying, so incredibly joyful.

This journey is hard. But so, so worth it.

This is Lauren Hope.


Wednesday, July 19, 2017

Therapy day

Wednesday is therapy day for both kids. Lauren's summer therapy program is Mondays and Wednesdays. Ryan gets feeding therapy on Wednesdays.

Ryan did awesome today! He tried vanilla greek yogurt (with orange food coloring). All of those things are crazy for him to try. He doesn't like vanilla. He doesn't like yogurt. And the only thing orange he eats are Cheez-Its! I'm super proud of him. He gets done an hour and a half before Lauren, so I took him through McDonald's for pancakes and then we went to the park! It was really a great day.

Lauren had a lot of fun at therapy. She colored a little booklet about dinosaurs. Each page was a different dinosaur that she scribbled with a different color crayon. She was so proud of this! She ran out of class, sat on the floor in front of Ryan and me and said, "Let me tell you!". Then we got home and she showed Greg. I asked if he liked it and she said, "He tell me good job!" It's so fun to see her so excited and engaged. She did elope briefly on our way out of therapy, she darted forward, was ducking under adult arms and dodging kids left and right. She stopped right before the parking lot. I didn't bring Monte because we had a long day (left the house at 11am and didn't get home until after 4). I'm thinking that was a mistake and I gave her a little too much freedom. Regardless, I call it a win.

I've been a little overwhelmed with life lately, so if you're the praying type I'd appreciate some prayers or kind thoughts. Greg is working a ton and I feel like I'm shouldering the entire burden of childcare, home stuff, medical stuff (for both Lauren and myself). Plus working full time. I. Am. Tired. I'm so thankful that Greg has a good job, and thankful he's able to work so much. But I need more hours in my day. More days in my week. Maybe I just need a wife?

Friday, July 14, 2017

Choosing grace

Lauren's biggest behavior struggle is her impulse control. She is super impulsive and it can cause her to be unkind when she really doesn't mean to be. It's worse when she's constipated, so that's an added layer.

We went to the grocery store tonight, just her and I (plus Monte of course). She was SO sweet and affectionate. She hugged me, kissed me, told me she loves me, held my hand, rubbed my head. I cherish those moments so much.

She also took a bite out of several plums, almost bit into a radish until I caught her face with my palm, hugged a basket of bagels, and knocked on my face (imagine knocking on a door...except for it was my face). She also grabbed my grocery list and threw it on the ground multiple times. She tossed my credit card onto the conveyer belt three times. She got to pick a candy for not eloping (she chose to hold onto Monte's back instead of using her tether and I'm trying to give her a little independence). She then changed her mind and threw the original choice on the floor and stomped on it. We bought smashed peanut butter M&M's 😂 This was all while I was trying to unload our groceries and pay the poor cashier. He was so incredibly nice and I tried to explain by saying ,"We're just having one of those days". He said thats okay, he sometimes has days too. Another woman I thought was judging me in the produce aisle actually approached me and said her adult daughter has Down syndrome and just wanted to say hi.

It's so incredibly nice when people see a family struggling and instead of judging choose offer grace and compassion. I can't put into words how much I appreciate it. It made the difference between laughing and crying for me, and the truth is I was on the cusp of both by the time we headed up to pay.

Tonight as I rocked her to sleep she told me, "I love you mommy. You kiss me mommy? I hug you mommy". And then she said, "I pull your hair please mommy". Uh, negative on the last one. But seriously, so sweet!

Today was not easy but it was a day I really saw her sweet personality behind her impulsive behavior. And she really is such a great kid. We took her for ice cream when I got home from work (Ryan got to go to a Tiger's game tonight with my dad, sister, and nephew). She thanked us multiple times and was so, so adorable. She was so chatty all day. She told us "Red means go, green means stop", and then cracked up because she knows that's not right. She then said, "That's silly! Green means go, red means stop!"

I am so thankful for this beautiful and complex child. As others choose grace with us, I have to remind myself to choose grace with her and today was a great reminder for me.