The life I thought I'd have

It's Halloween! Lauren is Anna right now at school, and for trick or treating tonight she'll be Elsa. I am really hoping she will walk this year for trick or treating! Evenings are hard for her because she gets pretty worn out during the day, so generally she isn't willing to do a whole lot of gross motor activity after 4pm. (Which is why she hits a wall in the middle of physical therapy every. single. time. Thank God for an extremely patient PT!)

She's been struggling a little with behavior lately and I just don't know what to do. For me in the morning, she's a holy terror. I'm only home one school morning a week, and I think she just acts out because she doesn't want to leave me. I get it, but it makes mornings so stressful. Today I had to practically threaten her with bodily harm (kidding!) to get her dressed. I put on her shoes and braces, she literally only had to sit down and give me her foot. Nope, not happening today. I'm pretty sure I burned a whole day's worth of calories wrestling her feet this morning. 

We switched her medicine schedule around because she wasn't sleeping at night. She takes Tenex, which is a non-stimulant ADHD medication. It calms her down and can have the side effect of sleepiness (that part usually stops after about a week, and it did for us). So when she stopped sleeping through the night, we moved her after school dose to bedtime. It worked! She sleeps through the night again! But behavior after school is not great. We tried increasing the morning dose to a full tablet instead of a half and it worked for a week or two. But now we're back to the way she was before meds after school. She's crabby, impulsive, irritable, and generally unkind. We are getting a whole lot more "I not love you" and a whole lot less cooperation. It's so stressful and it makes after school time difficult if we have anything we need to do. 

So if you are my friend or my family and I never am able to make/keep plans in the evenings, it's not because I don't want to.

Parenting Lauren as she grows up is presenting some different challenges than I expected. I know all kids can be stubborn, etc. But if you're also a parent to a special needs child (or if you know Lauren well) you understand. It's just different. It's a struggle for me to know in the hard moments if her behavior is willful, if it's personality, or if it's a communication barrier showing up. I don't want to undersell her, but sometimes it's like she just doesn't get it. Is that her cognitive impairment coming into play? I know I've said this before, but sometimes it's like her eyes go completely blank and she's in her own world. There's no getting through to her in those moments. It's incredibly frustrating and sad. Lauren is really intelligent and her speech is amazing. But it only gets us so far in the times that she refuses to (or can't?) use her words to communicate with us. These are the times where I don't know how to parent her. I feel like I fail her so hard in those moments but I just don't know what else to do. Sometimes after these episodes she will be remorseful and apologize. Other times it's like she snaps out of it and is back to being sweet. Other times it lasts until bedtime and she wakes up happy.

Sometimes this is really hard. Sometimes I'm jealous of my friends with typical children. I didn't get that opportunity because Ryan's journey has also not been typical. Sometimes I grieve the life I thought I'd have with my kids. When Ryan's in a good place it's so awesome and it just seems so easy, and I live for these moments. When his PANDAS symptoms are at a lull, he's just his normal super quirky self. I know how to parent that way. With Ryan we naturally do some social coaching (Example: Making sure he asks his friends what they're being for Halloween after they ask him. Talking to him before we go to a party or other social situation about what might happen, explaining what will happen, etc.). He likes to know what's happening ahead of time and to follow a set routine. So we can talk ahead of time about a school Halloween parade, let him know who is coming, what will happen afterwards. Once he thought he was getting picked up from school so he went to the office instead of getting on the bus. Then he had to wait until Lauren's bus got to our house before Greg could go get him. He was pretty ticked! I don't really go on Facebook anymore because it can be hard for me to see other families doing things last minute, or going to the apple orchard (it's not that we can't do this, but we have to try to plan out if Lauren will be able to handle it, if it's wheelchair accessible because she can't walk that far, etc) and sometimes Ryan struggles to leave the house if we haven't talked about doing it days in advance.

I don't mean to complain or have a "woe is me" attitude. Because we have a good life! It's just different than the life I thought I'd have and sometimes I still grieve that life.

This is Lauren during one of those times she was mad at mama for an unknown reason. She didn't want me, didn't want clothes, and just wanted to be alone.

Perspective

Today we had the pleasure of watching my 6 year old nephew play hockey. It's super fun to watch kids that age play any sport, and the best part is that my nephew is actually really good! My dad, brother in law, myself, my two kids, my nephew, and my niece all were there to cheer him on. Well, I'm pretty sure the kids were in it for the snacks. Lauren did really great! She didn't run away from me once, I only had to steer her by the shoulders a couple of times (she gets really overwhelmed in crowds and kind of shuts down/has no awareness of her surroundings. When that happens, she generally just weaves through crowds to get out of them while I yell her name and pray she doesn't get trampled. It's just as fun as it sounds.), and all the kids cheered for their cousin/brother!

Afterward there was a couple of bounce house type things. One was two slides with a "ladder" in the middle and one was kind of an obstacle course. All the kids did all of them, including Lauren. She climbed up the ladder part TWICE! I was shocked, I didn't think she'd have the stamina/ability to do it. She and I had to leave early because she got super tired and tried to sleep in the obstacle course, thus putting herself in danger of being stepped on. My brother in law tried to get her out which resulted in her completely melting down and getting hysterical. So I pulled up my van and then my brother in law wrested her off the ground and into her carseat. My dad helped see us off and kept Ryan so he could stay and play. Have you ever wrestled a 65lb Gumby? I don't recommend it unless you have to.

In the past, that kind of thing with Lauren would've made me so sad and overwhelmed and ruined my whole day. Instead, today I was able to see it for what it was. 10 minutes of disaster in an otherwise awesome day. She played appropriately with her cousins. She was polite and shared her snacks. She had so much fun in the bounce houses. She was really excited to go to hockey and wants to go again.

She's been doing really well in school, loves going to the gen ed class every day, and seems to be making friends. The school had a Walkathon and she walked with her gen ed class. She brought a book home to read last week and actually read it to us. She is learning great things. Times like that, I think that she really is more alike than different. Then we have moments like the end of hockey today, and I'm like...not so much. But I'm to the point now that it's really okay! I've felt no shame in admitting that grief is not linear and that some days this whole special-needs parenting thing is a tough gig and I do sometime still grieve the life I thought I was going to have. But I'm trying to be more positive and not let a small episode become a big one. I'm so thankful for family that steps in to help without me having to ask. Lauren has so many people on her team, and by default, so do I. I don't know that I'd ever have seen or realized the blessing that brings unless we had Lauren.

Ryan's been doing really well. He was a super good boy at the game. He was minimally anxious, the only struggle for him was deciding what snack to order (this sounds funny, but decision making for him causes major anxiety. I was able to diffuse it and he handled it really well today!).

The plan tomorrow is for my dad, my twin sister, her boys, and Ryan to go ice skating together and then go for a hike through the woods at a park near us.  Ryan's really excited about it!