Welcome to my blog!

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

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.

Wednesday, July 12, 2017

Truth

I'm afraid of jinxing it...but Lauren's behavior has been great! We still have the "I not love you" if things don't go her way. But she and I went grocery shopping alone (no Monte and no dad) and it went awesome. The next day we went to the ENT doctor (she needs her tonsils out and possibly tubes 😣). The next day I took both kids and Monte to Target and everybody was awesome.

The small successes all in a row feel like a huge win! I don't know if I've shared this here in the past, but I have anxiety and depression. Medication certainly helps but it doesn't make it go away. Some days it feels like I'm under water with life and I can't quite reach the top.  Some days it's like swimming upstream just to do normal, every day, adulting things. But the good days? Those are hard won victories I will cherish and take whenever I can get 'em.


Friday, June 30, 2017

Struggle Bus

In the name of transparency, I'll just say it. This special needs parenting gig is HARD some days. Recently, most days. Lauren's behavior is really ruling the house and we don't go in public unless the planets align (and we have at least 2 adults present). She is so impulsive. This week she randomly dumped out a full can of diet coke I was drinking. And smacked a hot dog off the table (sorry Timmy 😂). It honestly didn't even look like willful behavior, it was like she just couldn't control herself.

Tonight was willful. She threw a full cup of water on the kitchen floor because it wasn't Sprite. She then completely redeemed herself by insisting that we do the Hokey Pokey together before bedtime.

Ryan has been SO amazing with her lately. He really seems to be getting that she just can't help it sometimes. It doesn't make her behavior acceptable, but it's extremely sweet to see him give his sister some leeway when she needs it. Their personalities are perfectly matched as siblings. She has no concept of personal space and he's fairly aloof. He helps teach her boundaries and she helps to bring him into our world sometimes! He is the best brother in the world. And she's the perfect sister for him.

I recently saw somewhere recently that Down syndrome isn't really a "special need" because every person needs respect, dignity, etc. I understand this concept and it's principles are true. But there's no denying that life is harder for us because of Lauren's behavior. She's different. She has special needs. But you know what? That's okay. It it doesn't make her less valuable as a person. I'm finding that it's okay to admit that I'm struggling and to admit that I need help sometimes.

Navigating the journey of parenting a child with special needs is winding, bumpy, and really freaking hard. It's really not a journey I would've chosen for myself. But it's always worth it. Without Lauren I would have missed so many hugs, so many kisses, and so much character building (that's how I'm now referring to frustration 😂). She has completed our family in the best possible way and I can't even begin to imagine my life without her.

On the days it feels like she's forever in the "terrible two's" I have to remember that this too shall pass and take each day as the gift that it is.

Saturday, June 17, 2017

Kids are expensive

The title says it all about our summer! Lauren is doing her normal summer therapy program this year! She will get OT, Speech, Academics, and Theater (to work on pretend play).  We're super excited, she's made great gains in the past with this program and we thought it would be great idea before starting kindergarten in the fall.

Ryan is going to be doing some feeding therapy this summer and possibly some OT as well. He still has less than 15 foods total that he will eat. And even with those, he's eliminating them instead of adding new ones. His fine motor skills are not awesome, so he'll get some help with this too!

Ryan is always amazing, but lately he has just been so dang good! His precocious speech is and always will be my favorite. We bought him a sketch pad at Target this week and he put back the one I grabbed and got a different one, saying "I believe this is more cost effective". LOL. How is one person so adorable?!

We had an awesome day with Lauren yesterday, which are few and far between lately. She was a perfect baby angel, save for a couple episodes of rude language (I don't like you, go away, etc) and hitting her cousin in the face with a plastic rake. I let her stay up super late and she finally had to ask me to put her in her bed! I love days like that so, so much.

We're currently enjoying a few days in Northern Michigan with extended family (Grandma, aunts, uncles, cousins, siblings, nephews, etc). It's always a great time. Greg and I are taking bets on how long we'll be able to stay (AKA how long Lauren will be able to stay). Our family is amazing and totally "gets" her, so if we have to leave early we know it's with no judgement. That is worth more than gold to this mama's heart. Some days I feel like it doesn't matter how hard I try, it's never going to be enough. But if we just accept that Lauren's behavior puts some limitations on what we can do, it tends to go better and cause me less stress. Ryan will stay for a whole week with my parents.

Saturday, May 20, 2017

We're at Disney!

We're in Orlando on a much anticipated family vacation and having a blast! It's the 5 of us (including Monte), Grandma and Grandpa (Greg's parents) and Uncle Blake, Aunt Wendy, and Baby Xander!

The kids did mostly awesome on the plane, save for Lauren getting bored and wanting to get up and wander around. Monte did AMAZING and I was worried for nothing, Delta Airlines was SO accommodating and awesome with him. They even offered him water and cheese (we declined).

We went to Magic Kingdom and Hollywood Studios and had so much fun. Lauren loved the Magic Carpet Ride. She and I only stayed at Hollywood Studios for about 30 minutes before meltdown city, we spent the rest of the day watching movies back at the condo. We didn't bring Monte that day and left him with Grandma and Grandpa, so I'm wondering if he wouldn't have helped a little with tolerating the sounds/sun/heat for Lauren. Ryan was super brave and went on Splash Mountain, Space Mountain, Hollywood Tower of Terror, and Indiana Jones! Monte did great at Magic Kingtom, it was super duper hot so we gave him plenty of air-conditioned shop breaks and lots of water.

The kids have really loved the swimming pools here at the condo and there's even a great splash park. The kids have been eating their weight in ice cream and fruit snacks, like in any successful vacation. It's been a really great time!

It's stressful for me because our house is currently listed (went active on Thursday). But at least we're not home while we're showing the house! We're hoping we get a great offer while we're gone so we can put that stress behind us a little bit. So please pray for that!

Another fun thing is that Lauren's speech is always improving and it's so fun to see that while on vacation. Lauren now says "Gwamma" instead of "Gaba". She asked for her glasses when she was sitting on the balcony so she could "see birdies". She has also started calling me by my first name which is totally hilarious and she knows it! Ryan has been a great brother and has been playing with her so much while we're in the condo and at the pool.

My heart is full!


Tuesday, April 25, 2017

Kindergarten IEP

We had Lauren's kindergarten IEP yesterday. We reviewed her MET and planned for services next year. Lauren's preschool team loves her so much and really believes in her capability, so it was awesome walking into a room full of people who believe in her.

Kindergarten will be in the cross categorical classroom, meaning there will be kids with different IEP classifications in her class, and it is considered a self-contained classroom. However, she got the same teacher I met a couple weeks ago and toured her classroom, so this makes me so excited! I know this teacher will help us to facilitate meaningful inclusion during her school day. We'll work out the particulars of that once the school year gets started. It's also going to be at the school I wanted, so that makes me really excited as well!

I'm really excited for her to enjoy the rest of this school year and get started in her summer programming (we do a private summer program that consists of academics, PT, and OT; this will be her 3rd summer). Then onto elementary school.

Where did the time go?