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.
This weekend we took Mya to the Enchanted Princess Ball. It is about a 3 hour event with three different parts. The first part you check in and you can color a picture or pay to have your nails painted or buy a survivor. Mya is sensory system is overwhelmed from the moment we walk in the door. She seemed to remember doing all of this from last year and so she kind of knew what to expect and I think that helped some. I made sure we were sitting away from the booming speakers for the very loud and long for her performance. She on extreme overload and tried to flip the massive round table we were sitting at repeatedly, she threw her shoe at one of Sleeping Beauties fairies and hit another little girl across the aisle. She threw my phone under foot of one of the performers actively trying to perform. Both my mother in law and I took her out several times. She tried to exit the fire exit, pull the fire alarm and shut me out of the ball room after she re-entered! Sigh
ReplyDeleteA lot of times when we bring her places she is just miserable like her birthday party this year that was combined with Landon's. All the kids participated in the spy theme missions, but Mya laid on the floor crying and miserable through her whole party. How do I help her when I am supposed to be running a very interactive party. Next year our kids will not be having parties! You are not alone wondering about what the grass looks like on the other side of the fence. I am losing my mind over her with 4 kids within 5 years of each other. ADHD, Down Syndrome, food allergies like crazy and 4 very strong willed children! lol This is not the parenthood I expected, but it is the one I prayed for and the one I was blessed with. Parenthood is so hard and you are not entirely alone; though few may actually know what your true life looks like. You are doing great and working hard and I know you are praying like crazy for your babies.