Welcome to my blog!

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

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.