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

Friday, November 17, 2017

I'm a good mom

"I not love you!"

Sigh. I got home from work around 6:30, and this is what Lauren greeted me with. So, it was going to be that kind of night? I was so tired. I worked over 40 hours this week and had a good 45 minute commute home due to traffic and road closures. I just wanted somebody to be nice to me! I was not prepared for that kind of night.

It really wasn't though. I told her that we have to be nice to our family because our family loves us. I was then on the phone with my sister about 20 minutes later, and Lauren asked who it was. I told her and she said, "I like her! I be nice!"

She wanted new pants because there was a tiny hole in the knee of her leggings. As we were changing, I asked her if she fell down at school (she did, she fell during PT and bumped her head, nothing serious). She told me, "Nope! Henry fall down at school. He not hurt his back neck, he hurt his front neck! (pointing to her own throat). He cry! No blood." It took me a good 5 minutes to understand she was saying Henry, so she was mad about that. I also have no idea if that's even true, also how he would fall and hurt his "front neck" I have no clue. But she was very animated telling me about it!

Then she told me, "I eat snack after school. I get ketchup everywhere! Dad be mad for me." And lo and behold, she really did have a full plate of ketchup at the kitchen table. She is getting so good at re-telling events!

We sat down for dinner and she told me she was cold, which actually means she wants me to get a blanket and wrap it around her like a poncho. Then she told me "I can't use my hands! You hafta feed me!" What's a gal to do? I fed her a couple bites of tortilla chips dipped in ketchup...to my little girl wrapped like burrito in my fancy decorative blanket that I didn't want the kids using, smiling up at me like I just hung the moon.

She then told me, "Mommy, I tired." So we put on her Christmas jammies and talked about what she wants to ask for from Santa. She wants a baby doll and a batman! She gave me endless hugs and kisses. She gave her dad enough kisses to be obnoxious. She hugged her brother before heading into her room.

We had a little tea party before bed with me, her, her stuffed lamb, her stuffed Max (from Secret Life of Pets), and her garage-sale-find life size Barbie. Today ended up being a really good day. We have days where she seems so distant, almost like her true personality is locked way. And then we have days like today, when she's just so with us! She was so animated, she was signing dancing, she was teasing her uncle, and engaging us in conversation. She told us stories about her friends at school. I live for these days.

As I rocked with her before bed I realized something. I am a good mom. Even on the days it's hard. The days that I just can't wait for bedtime. Even though I mess up every single day and end up inadvertently reinforcing her bad behavior by just giving in. Even the days she goes to be mad at me for not giving in.

It's no secret that Lauren is not an easy kid. She is very busy. She wakes up full speed and stays there until she tells us she's ready for bed, luckily she likes to go to sleep early. Some days are emotionally challenging, physically challenging, and make me feel like I'm failing everyone I'm responsible for. But on those days, I need to remember that I am a good mom. I love her more than life itself. Lauren is loved, and she knows it. Even when she doesn't feel like she loves me, whether that's because something frustrated her before I got home or because she had to poop or because the planets didn't align, I really do believe that she knows I love her enough for both of us.

If there is one thing in this life I know how to do, it's how to be her mom. That doesn't feel good every day and in all honesty, I don't like it every day. Sometimes my heart and my soul feel crushed by the weight of my failure and I wonder why God thought I was capable of being Lauren's mom. Those are the days I need to remind myself that she never feels that weight. She doesn't feel like a failure at all, she doesn't wonder why I'm her mom. She just knows I'm here, she knows that I love her, and she knows I'll be there that day, and the next, and the next. "I not love you" to Lauren means, "I'm frustrated and I don't know how to tell you" or maybe it means "my belly hurts and I don't know why" or maybe it means "I woke up crabby and I'm taking it out on you". It might even mean, "I'd rather have dad right now". But the hugs I get at bedtime, the smiles I get for giving her a new cup of water, the way she rubs my cheek and tells me I'm adorable (she really does this, it's ridiculously cute), those are the ways she tells me she loves me, even on the days she can't say it with words.

Sunday, October 22, 2017

October Update and pondering about foot surgery

Lauren is about 3 weeks out from surgery and doing awesome. She's off all pain meds, constipation is resolved, and she's super happy to be back to school. Before bed tonight she told me that she really likes kindergarten, then told me all of her friends names (some of which I couldn't understand) and named her teacher twice! She really loves her teacher (so do we). She also told me she really likes the safeties and they're her friends. There are a couple of "safety" kids (4th graders) that go out for recess with the kindergarten kids. I'm honestly unsure if they always have, or if that's new since the elementary school only just started housing the special education program. Either way, Lauren absolutely loves them and I think they really love her too. Her teacher communicates multiple times a day via an awesome app and sends pictures. Once I got a picture of Lauren and a classmate or two smiling with a safety. It was really awesome to hear her talk about them. I LOVE when she tells me stuff about school, she usually just says, "Nothing, I'm tired". So to get so much info straight from Lauren is pretty great.

Lauren's behavior has been pretty good lately. We still have our snafus here and there, but overall, I truly can't even believe the difference since we started her on medication in early September. She was with grandma today and only got 1/4 tablet in the morning instead of her usual 1/2 tablet. She was like a (very adorable and sweet) wild animal this afternoon. She was literally carrying our large, metal kitchen garbage can around the house. And impulsively pinching my face. It got better after her normal afternoon dose (she takes it twice a day). I'm afraid to jinx it, but she has barely even tried to elope since we started medication. She's still wandering sometimes, but she's rarely bolting away from us anymore. She's still definitely a two-parent kid when out in public, but it feels less overwhelming. I found out recently that her medication is on back-order from the manufacturer and had a mini-meltdown. But I managed to stockpile and I think (and hope) we're good for a while!

Ryan's getting more acclimated to his new school, but it's not going as smoothly as we'd hoped and he's struggling a bit to make friends. I haven't posted a lot about it because I'm respecting his privacy and he'd hate for me to write about it. But if you have prayers or good thoughts to spare, we'd appreciate them. He does have a couple of new friends now and things are looking up!

Now about the foot surgery. I've posted before, we discovered recently that Lauren has a congenital bone fusion in her left foot. After Lauren's tonsillectomy, I was so upset about how she was in the recovery room and so upset about how constipated she got, that I had kind of told myself that we weren't going to do the foot surgery she needs. I'd almost had myself convinced that we could wait a couple years because it's not so bad. Buuut of course reality has kicked in. The orthopedic surgeon said we should schedule surgery when it's causing pain and impacting function. I'm kind of unsure about pain because I truly do think she says, "My leg hurts, I can't walk" when she doesn't want to walk. But she's not faking the limp and she's not faking falling down a lot. Her limp tends to be more pronounced at the end of the day (not surprising) but it's pretty obvious all the time if you're looking for it. Watching her run is terrifying because we can see her left foot turning in and there's a 90% chance she's going to trip and fall. It's not like it's really limiting her activity at school, by all accounts she plays on recess and walks fine at school. But after school and on weekends we feel like her limp is pretty pronounced and she is voicing pain. How the heck do we know if we should believe her?! My original plan was to do the surgery in the spring so we could avoid wrangling her wheelchair in the snow. But now I'm questioning that because her whole summer (6 weeks in a non-weight bearing cast) will be less than fun. We want to go camping, and she loves swimming. And if we do it in the summer, I'm probably stuck home for longer because we're using a daycare facility over the summer and I doubt they're going to be gung-ho on taking on a kid with special needs and physical restrictions/toileting transfers,etc. The hardest part is going to be figuring out how much time I really need to take off work (I don't really want to take several consecutive weeks off of work, but it's likely that grandparents aren't going to be able to lift her). I may just adjust my hours at work during her recovery period, like take a couple weeks off right away and then just making sure I can get her on the bus because there is no way in heck I'm keeping her home from school for as long as she's in the cast.

I wish a magical decision-making fairy would just tell me what the right decision is for when/if to schedule her surgery. If she was in serious pain and refusing to walk all together, I wouldn't even hesitate. I honestly don't even know if I believe when she says it hurts. And her limp is impacting function for sure, but enough to schedule the surgery? I just don't know. The thought of if/when to do this consumes me. This part of parenting is not in the manual! (Seriously though, if kids came with an instruction manual parenting would be so. much. easier.)


Oh, and here's a picture of me and the husband. He says I never post about him, so now I am. We have amazing parents and managed to sneak away for a kid-free weekend to Grand Rapids. We were total tourists and did a beer trolley tour of breweries. We slept in, drank too much, and remembered why we like each other so much.

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