Welcome to my blog!

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

Saturday, October 7, 2017

Tonsillectomy

Lauren had her tonsils and adenoids removed on 10/5. I was so scared and almost cancelled multiple times! I had mine out almost 3 weeks ago and I'm still not feeling back to myself yet.

She's doing way better than I did. As long as I'm not late with giving her pain meds, she's really doing fantasic. Nobody's sleeping because I'm waking her up every 4 hours for meds, but it's 100% worth it to make sure she's not feeling badly.

The surgery went great, no complications. She is, however, apparently one of those people that wakes up from anesthesia really agitated. As soon as we got a glimpse of her I knew it would be a nightmare. She was agitated, out of it, and her OCD was in overdrive. She was refusing to drink anything so we were thiiiis close to being admitted. Her OCD was largely centered around the tape holding her IV in. She just kept saying 'I want it off. I want it off. I want it off.". She couldn't stop moving her arms and legs. It was bizarre. I felt so helpless because nothing I was doing or saying was helpful. She didn't want to be touched. She finally drank some water so they were willing to pull the IV. Then she wouldn't let them touch her. Luckily, she was willing to let me do it and the PACU nurses were comfortable with this. Thank GOD I'm a nurse!

So yeah, about that being a nurse? I mean, I knew this already, but it is so different when it's your own child. I had to step out of the room for a second and totally lost it. I was sobbing, it was so so sad. I know that in comparison to her medical/surgical history, tonsils and adenoids are nothing. But I'm a firm believer that there is no such thing as a minor procedure when it's your kid.

She's feeling lots better and I am so thankful everything went well.

In all honesty, it's making me re-think doing the surgery she needs for her foot. She get around pretty well and hasn't complained of a lot of pain lately. We'll have to play it by ear. I feel like a horrible mom for saying that, but I'm terrified of going through that recovery process again.

Tuesday, September 26, 2017

Service dog update!

I thought I blogged about this, but I just realized I didn't! Here's a good explanation of how Lauren, Monte, and I work as a triad team.


The thin leash on the left is attached to Monte's head collar. (It can look a little like a muzzle, but it's similar to a horse bridal in that it just allows us to "steer" him by the head rather than his neck. He can open his mouth fully with this on.) I always have full control of this leash, I wear it as a hands-free leash, it goes on like a cross body bag, so I have full use of my hands (necessary for all kids, especially kids like Lauren, lol).

The thicker leash you see on the right is connected around Lauren's waist and attaches to a silver loop on Monte's pack. This physically stops her from eloping. He will either stand and refuse to move or lay down if she tries. Generally, if we're just all walking, he just walks at a normal pace. If she starts to bolt, he resists and then I can then stop and talk to her, get more on eye level, and try to talk through the problem.

When they aren't tethered, he will stand in front of her and physically block her from eloping. He's only actually had to do this a couple times. The truth is, when he's with us, she's much less likely to run. She loves him and he gives her a sense of purpose and responsibility. There's a small handle on his pack that she will sometimes hold onto. Other times she'll hold onto his leash with me. Other times she will just rest a hand on him. Other times she will just walk next to him. This can be tricky, because usually then he tries to block her (even when not neccesary) and just gets in front of her and she gets irritated. It's a bit of a work in progress, I think he feels like he needs to be touching her or connected to her while we're out in public. Lauren generally goes with the program! The only time we really force the tethering on Lauren is if we're somewhere where we KNOW it's going to be hard for her. Church is rough because it's loud, crowded, and generally a huge trigger. Places like Target, etc that can be quieter she tends to listen a little better. But she also knows she gets no chances. If she tries to elope, they get hooked together. And sometimes we give her a choice and she will choose to be tethered to him.

My picture says autism anchor dog. That's technically what Monte is. Lauren doesn't have autism, but kids with Down syndrome can (and Lauren does) share a lot of characteristics with someone on the autism spectrum. Lauren tends to elope, she has sensory issues, she wanders (different from eloping), she has meltdowns. Monte helps her with all of this. The sensory input of Monte's fur helps give her sensory input. If she's freaking out because something is loud, or hurts, or is bothering her, she can pet or hug him and he calms down her overactive sensory system. He blocks others from getting too close to her during a meltdown or when we're out in public. (As you probably know, Lauren is not your "they're always so sweet" kid with Down syndrome. She likes her personal space from strangers.) He stops her from eloping (running away). He stops her from wandering (aimlessly wandering away from us because she can be so off focus and off task that she doesn't generally realize that she's walking away from us and into danger).

Basically, he's her lifeline. Where she goes, he goes (outside of school and brave moments on my part). He seems a little lost without her sometimes during the day and he'll wander around the house. He loves his downtime, don't get me wrong! And he can be a crazy dog when he's "off duty". But he luckily really has a drive to work and is amazing as soon as we give him the "dress" command and put his gear on.

Monday, September 25, 2017

Why?

I had my tonsils out one week ago today. If anyone ever tells you, as an adult, to have a tonsillectomy/adenoidectomy...JUST SAY NO.

Seriously. I'm a week out and it's still pure misery.

And on top of that, both kids now have strep! Thank God I'm already on antibiotics since my surgery. Both kids are now also on antibiotics.


This picture is from Friday. It was a sad, yet extremely snuggly day. Ryan's usually a champ when he's sick, but not so much this time. He's been pretty low key, but has perked up significantly. Lauren is back to her normal (wild) self. Both kids will be going to school tomorrow and I can convalesce in peace.

My mom took Lauren home with her today for like 4 hours, which was amazing. I was feeling so horrible and so was Ryan. Lauren wasn't, which is amazing, but she's hard to keep up with when I'm not post-op! Monte was lost, poor guy. He likes to be touching her, or at the very least, sitting underneath her at the table. He even lays down by the bathroom door while she's going potty, forcing her to touch him to step over him or make him move. If she's not around, I'm his person and I've been lazing around. I feel so bad, I know he's bored out of his mind. He (thankfully) is a dog that loves to work, so a full week with no public access has been terrible for him. Luckily he had a full weekend prior to my surgery, but I still feel bad. I need to drag myself to the grocery store and bring him while the kids are at school sometime this week. If we have spells like this, Greg or I (or both of us) will take him places like the grocery store, the mall, out to dinner, etc to work on/keep up with his training. Restaurants are a great place for training because it's great distraction/leave it training. And he's already so well behaved while "dressed" that he's no bother anyways. Last time we took him out to eat our server was absolutely shocked at the giant dog that left with us. It was a great compliment!

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.