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

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.