Wednesday, October 5, 2016
It hasn't been quite a month since I updated the blog, but it feels like a lot has happened. Let's start with Carter- these adorable pictures of him make me smile! His 1st grade teacher sent me the one on the left from recess at school, and the right is just on a Sunday. I realized I don't take many pictures with Carter, and he is so smiley and happy. Carter seems to be sick almost constantly since school started up. He got strep a few weeks back and got this rash on his back and spots all over his face. The spots came back it seemed after we completed the antibiotic, but the doctor said they look like acne. I'm still not sure what they are, but he's still cute. Right now he has a cold/cough that has been lingering. He has been doing well at school and still doing horse therapy every week. I love seeing him get excited for that. My parents came up to see him ride the horses, and my dad was able to walk with him. While I don't feel like I have a lot of time with Carter, he sure is a sweetheart. He loves going on walks and flaps like crazy when he sees the bus coming to pick him up for school. I feel like he's such a treasure and a blessing. We were signed up to do a run/walk for Shriner's as a family, but that's when Carter had strep so we weren't able to go. I ended up getting strep as well, blah. So when we go on Monday to get Carter's new wheelchair (yay) we'll get his race bag anyway.
This month we're going to start having some Young Women leaders and girls come to babysit once a month to help give Chris and I some time out. I hope it will work out well and they will feel comfortable doing service and also will love getting to know the kids, especially Carter. I think it will be a unique opportunity for these teenage girls to serve and also be around a kid with disabilities. There is one kid in Carter's Primary class at church that is just so warm and welcoming to Carter- he lets Carter embrace him and is looking out for him and genuinely happy to see him there. It's rare to see this and it just warms my heart and usually makes my eyes wet. We recently had the Primary program in church, and Carter didn't participate in anyway. I realized that people just don't know what to do and maybe communication is necessary in a lot of situations. While I felt like he was not acknowledged and it did hurt a little, I also realized I probably shouldn't place any blame because they probably weren't intending to wrong or hurt us. While at Sierra's dance class this week, a little girl probably 5 or 6 openly glared at Carter and gave him some pretty disgusted looks. I was shocked at first and even angry; the mom was clearly oblivious. I had to think for a moment, and realize that again, people just aren't used to seeing or being around people or kids like Carter. While it does hurt, I have to realize that they probably just weren't taught. This painting comes to mind as well as a quote I came across on lds.org: “How are the works of God made manifest in these, our handicapped brothers and sisters? Surely they are manifest greatly in the loving care and attention given by parents, other family members, friends, and associates. The handicapped are not on trial. Those of us who live free of such limitations are the ones who are on trial..."-Unknown
Now on to Sierra- she is doing great in preschool, she loves going! She is also doing great in dance, she looks beautiful and does well when I peek in. She has gone on a few daddy/daughter dates- once to Winger's for lunch and once to see "Secret Life of Pets." It's something I want to continue because it's important for our kids to get one on one attention, especially when our lives are so busy. Sierra has been struggling to do her online preschool program in addition to everything else, so we may have to back out on that. She is constantly singing her ABC's and different songs she is learning at school. Her teacher said she is adorable and so talkative. We have parent/teacher conferences next week, so I'm anxious to hear more. Sierra had pictures on Tuesday, and today she had a field trip to the Sunset City Fire Department. I was able to go with her, it was so fun to see her interact with her classmates and be so excited to have me there with her. I feel like she is such a treasure, so helpful and lively and fun. She loves to help push Carter in his wheelchair to the bus and is always looking out for Keaton and playing with him. She has recently taken up sweeping. Sometimes I pinch myself because she is my pride and joy. It's been hard getting times that work with speech, but this Friday she has an appointment and also finally her appointment at the Developmental Assessment Center with the speech pathologist. She has actually been doing great, so she may be just fine. She had a small line in the Primary program and did great!
A lot of new shows have come back on that I love: Law & Order SVU, Shark Tank, Last Man Standing, Once Upon A Time, Poldark (a new obsession), and the Mindy Project. This month I was able to go to a movie with my mom, breakfast with a neighbor, and dinner with my best friend. It's always nice to get those free times to myself. I went to the Instacare twice in just a few weeks- once because I got really dizzy and it wouldn't stop, so I had to take medicine, and another time for the strep Carter gave me. The hazards of being a mom:( Some things I have to look forward to is a surprise concert for Chris in December, The Forgotten Carols, and then a girls trip to Vegas in March 2017 to see the Backstreet Boys! With the holidays coming things fill up fast. We decorated for fall and Halloween and Sierra has been so excited about trick-or-treating. With school back in full swing and our other activities and appointments, we are getting used to the new schedule again. It takes some time, thinking and maneuvering on my part but so far we haven't forgotten anything...knock on wood. We can't always do everything like play dates, family dinners, parties etc but we try to. I feel tired most the time and I'm hoping one day it will get better. So I found out recently too that one of my best friends from high school moved to the city right next to me (they're small up north) and we were able to go to dinner and catch up which was lovely. I feel like it was a tender mercy, something I needed.
Now on to Keaton- a lot to update here. Still waiting to see if he qualifies for SSI, they are requiring more information. Keaton is doing ABA therapy 3 mornings a week- twice at the center with other kids and it's called pals. It's more of a play group with structure and expectations, and we just got to the point where Keaton doesn't cry anymore when I leave (knock on wood). It's 3 hours so it's been giving me some much needed self care time 3 days a week. They go to the park, have snack time and art time and work on goals. He plays a lot with balls and bubbles of course, and they've been taking it easy on him while he gets adjusted. The girl he had on Thursday mornings stays with him on Thursday at pals so he feels more comfortable. The girl he has on Wednesday mornings at the house he's had a lot, so he knows her well. His eye contact has improved so much, along with vocalizations and pointing to things. He still needs some prompting and reinforcement, but he is doing excellent. If you aren't around him everyday, you might not notice the difference. He's also still doing speech every other month, OT/feeding twice a month and the developmental specialist once a month. I feel like the one area he isn't improving on is feeding. He used to do well with fries and goldfish crackers, but recently he's chocked or spit them out. If you have a kid with eating difficulties, you let them eat whatever they will, seriously. He's actually been napping better, I think all of his activities are wearing him out.
A few weeks ago we started a class called Play2Learn at the Children's Center in Salt Lake. An old friend that I grew up with told me about it. It's basically a boot camp for Keaton and I on autism and how to engage better. It's based on the DIR Floortime by Stanley Greenspan (deceased) and Serena Wieder. There are lots of videos about it on YouTube and also a book. So, a speech pathologist by trade teaches the class over 10 weeks, instead of the original 10 month program. So it is much more condensed. We meet every Monday from 9-11:30, and Keaton plays with 3 other kids while I learn with the other 3 parents. What does DIR stand for? D is for developmental, I is for individual differences and R is for relationship-based. What is Floortime? It is a specific technique where you follow your child's natural interests, take his lead so to speak, and at the same time lead your child towards a mastery of social, emotional and intellectual capacities. It definitely emphasizes the role of the parents and how they interact with the child. It perfectly complements ABA therapy, because ABA is so technical and necessary, but Floortime is the fun and joy of learning. It seems so simple but yet is so complex. I could write for hours about what I've already learned. Kids with autism are programmed differently than typical kids, and it's trying to look at it from Keaton's eyes and go from there. How to engage with him and get him to interact. Each week they videotape us playing with our child and then they give us that tape to watch, so we know what to work on.
As parents, we're learning each week a new concept or tool, as well as watching videos and discussing our experiences from the week and how to help each other. Week 1 we focused on "Being With". The goal was to establish a relationship and build feelings of trust and attachment. Our homework sheet we were to write down how many sessions we did, what we learned, what were Keaton's favorite activities and what was his attention on, and what were his intentions? A lot of kids with autism have comfort zones, and when they are doing these activities they don't really need anyone else. So I learned that week what he liked to do, and did them with him. At first he resisted which was normal, or bounced from one thing to the next, but then he got really excited I was participating with him. ABA is a lot about coaxing him to do specific things, but this is about doing what he wants to do. We did a lot of cuddling, playing with the strings on the blinds, playing with balls, swinging, etc. Then we were to look at his activities; is it a cause/effect activity, is it sensory, it it sequence, or pretend? Keaton has since sought me out more to play, and that was my aha moment for the week. How important it is to just slow down, talk less, don't ask questions, especially don't ask why he's doing what he is doing. Just quietly watch and participate with him. What a joy those moments have been.
Week 2 is this week, and we are focusing on the rabbit hole techniques. How to get our child to interact with us. We are supposed to ask ourselves this week- why not? If Keaton wants to play with water, why not? If he wants to repeatedly hit the string on the fan or blinds, why not? For whatever reason, that is something he likes to do. He also loves to play with the water in the sink and turn light switches on and off. While some of these things drive me up the wall, he enjoys them. As I find little moments to spend with him, I am filling his bucket. Have you heard of the love languages? Each adult and child has one, and once we find out what their need is, we can fill their love bucket. As I do that, hopefully the tantrums and mis communications will be less. Even though we aren't actually communicating with words, we are with actions and our connection. It's amazing what I've already learned. I am profoundly grateful I have been able to participate in this class, even if it has added to my stress and anxiety and schedule. I always want the best for my kids, and if you can start younger, all the better. I am also grateful to my neighbor for helping me get the other kids to school on Monday so I can make it to this class by 9. I hope one day I can help someone else out who is struggling to understand their child. I feel like this will also help me understand Carter and even Sierra more. Week 2 also has 3 parts: "being with" from week 1 which is the foundation to this program and so crucial, narrating the activity but not asking questions (up, ooo, crash) and imitating/parallel play, copying what your child is doing.
A lot of times as parents we feel the pressure to ask a lot of questions, to need to have a purpose in every activity or second of the day. But that can often lead to frustration for the child and the parent. We have things we have to work on from ABA, from the OT, from the speech therapist, etc and we fill our days with so many things. This is really teaching me how to stop and enjoy and simplify. LESS IS MORE. I found even after school that asking Sierra less questions and instead asking open-ended questions, she doesn't get mad at me and the transition from school to home is much more smooth. So it is with Keaton- asking less questions and either being quiet or just narrating makes our playtime much more enjoyable. The pressure is less on me, and it leaves room for imagination. It's like I'm being taught how to play with my child, and it's amazing.
Things haven't been all rosy and peachy though, most my days are constantly busy and overwhelming and I sometimes find myself in tears at the end of the day. A lot of Keaton's behaviors can be immensely frustrating and cause clean up. It feels like I'm not doing enough, or that I'm forgetting something or not measuring up. It's easy to be hard on myself and not to be reasonable. I do have control issues and OCD and anxiety- they are things I'm working on. I'm open about it so people can relate. I have high functioning depression and anxiety, but it doesn't mean I don't hit bottom sometimes. It is easy to feel alone and down, to get upset. I try not to let those feelings get to me. I try to be positive and upbeat, especially for the kids. I have to realize my life is different than I thought it would be, it's not what I expected, and that's okay. I can mourn and grieve and get mad and even cry. I can realize I'm not going to measure up to the physical therapist's expectations, or this person's, or that I'm not going to be able to volunteer at Sierra's school or this and that. That I am just going to barely make it each day, by the skin of my nose. That I might forget to brush one of the kids' teeth at night, that I might not get enough time to read to them, etc. It is hard to get it all in in one day. And it is really hard for people to understand my life, because it's not theirs. That's okay. I have moments that bring me to my knees, that make me weep because it is so hard, or because people are so ignorant or cruel, and it knocks me down a little. I have moments with my kids where I realize I am not enough, and so I pray that God will pick up the pieces and let my kids know how much I love them and that I really am trying so very very hard.
I am not perfect, so far from it. I have lists on my phone, my fridge, my computer, my nightstand...things to work on, things to do, things that are missing, important things, things that can wait, etc. I have books waiting to be read, shows waiting to be watched, things in the house that need to get done...but slowly, I am doing what I can. I know most moms experience this, I am no different. I don't try to show off that I am so much busier or important, I'm just trying to get through life with some grace and love to others and especially to my littles. I am trying to work better and not appearing to need pity all the time, to take ownership of my life, my decisions and my circumstances. I have been focusing more on service and others struggles. Thanks for reading, sorry it's so chaotic! If I missed anything, I will update this post if I remember. As always, feel free to comment or ask a question!
What's Coming Up: Speech assessment for Sierra on Friday, Carter's new wheelchair on Monday, Carter's school pictures, Halloween!