She has had the best teachers known to man in school, and her extracurricular teachers are pretty darn awesome as well.
And I’ll be honest, there’s not much better than having an extra person to love and care for your child when you worry about them so much.
Lately we have added a few extras.
At one point at the beginning of this school year as her sisters and friends’ schedules started filling up Lucy let me know she was ready for some more after-school activities. She’s meticulous how she keeps track of her days and she wanted to have her own schedule. Of course, she has her “jobs” she needs to do each day…her reading, practicing, zone, etc. But as she kept asking friends over to hang out after school and finding they were busy with one lesson or another I think she realized she was being left behind in the after-school activities.
In some ways I love that she “gets” things like that, and has the drive to keep up, but in some ways it makes me sad because she’s not able to “keep up” in the way my other children do. She has grown out of doing many of those things on the same level as her friends. Soccer now makes her too tired, she can’t keep up. Dance is the same (my heart ached for days after her last dance recital a few years ago). Even her beloved art class last year got too tricky for her to see the small examples her teacher was showing the kids so it started to leave her feeling frustrated (and the teacher too). She has piano lessons that she’s doing really well at but they’re early in the morning so she was feeling a little out-of-the-loop on the after school commitments.
So she asked if she could take some more lessons.
And when I got over being sad that she couldn’t do the same things all the other kids do (well, I don’t know that you ever really get over that), Dave and I got creative. I got to work figuring out some things for her to feel involved in. I did a little research and found the BEST gymnastics teacher (one of Elle’s friends who graduated last year) who comes once a week on Thursdays and works with her individually. She has helped her backbend down I tell you and she works so hard and comes out with a red face from so much trying every week.
And the sweetest dance teacher comes another day (another one of Elle’s friends).
And thanks to my neighbor’s great recommendation I found an art class that fit her to a “T” that she didn’t have to have amazing eyesight to keep up in. They were even working on Greek art which was right up her alley since she just studied Greece last year.
So grateful this girl’s got some good feisty grit to advocate for the things she needs. She’s gonna go places in life. Maybe different “places” from her friends, but they’ll be good ones because she’s Lucy after all.
Love you baby!
How close are you to Phoenix? There are some great activities that may interest Lucy…therapeutic horseback riding, martial arts,tandem biking, kayaking. Sometimes the school for the blind offers weekend overnights. At Perkins they have overnights that work on daily living skills, or Braille skills while having fun, too. Some are "bring a friend" sleepovers in the Braille/Talking Books Library.
http://www.daring-adventures.org/adaptive-recreation.html
http://www.acb.org/arizona/recreational-Options-12point.html
Horseback riding- http://camelotaz.org/about-us/
Martial Arts- (the instructor is blind) http://blindtigerma.com
I am so grateful for these ideas! I will look into them. I think we've been used to Lucy being able to keep up with mainstream kids relatively well up until this point, we've kind of clung on to that wishfully thinking that she will stay that way. It breaks my heart in a way to realize that it's time to look into these things, but I'm SO grateful that they are available. I am going to look into each thing you listed, thank you so much for sharing!
It will be fine. Mainstream isn't all or nothing. I know you seem shy with the idea your life is full of perfection, over the top and exceptional family members. That is what is presented. The difficult part in raising a child with a challenge is that we need to become comfortable in their world instead of forcing them to conform to our world which is our instinct. Thank God we don't isolate people anymore. The main goal of parenting is for them to be content in life. We do all this fluffy stuff to make kids have a dream childhood and pave the way to success but I don't think that is necessary. Lucy will get the good feeling spirit is thick feeling from being able to serve and get her hours in, the twinkle lights and centerpieces will not matter to her like they may for Grace. I could be wrong but you seem to be uncomfortable with the "special" activities and classes option. I think once you spend some time there you will find your worried for nothing. We don't only do special activities. It's a mix. But while he is there I won't worry if the well meaning person can adapt the activity in a meanful way for my son to participate. I see him able to accommodate others issues instead of being the one who stands out all the time. I see him relax for a couple hours not having to try so hard. It's a fabulous escape from the pity or the well meaning enthusiastic praise/encouragement we seem to get from others.
Its amazing how we all see things differently, i have never once thought this family presents perfectionism. I don't even know them but want to establish a home life like this. A dream childhood too. I never had it so want it for my own family now and love that I'm doing it right now. All the way in Australia with 4 babies … and pretty much no solid extended family to learn good values from. Such a family like this is spectacular in our world today.
So, I'm not 100% familiar with what Girl Scouts is like in the States, but have you and Dave considered that for Lucy? I understand there's a strong emphasis on Scouting for LDS boys, so you've done that with Max.
I'm a Guider (leader) for both Brownies (Grades 2-3) and and Guides (Grades 4-6) with Girl Guides of Canada. Both of my units have a very diverse group of girls with a HUGE spectrum of needs, from Autism, to social anxiety, to ADHD, to FASD, to processing disorders. I've always found Guides to be incredibly inclusive and good at adapting programming to meet our girls' needs.
Each unit and district is very different, and Girl Scouts is a separate (but sister) organization from Girl Guides, but I've seen first-hand how empowering Guiding/Scouting can be for girls, particularly those with special needs or struggles with self-esteem. I mentioned in the last post, that my girl has special needs, particularly strong social anxiety and ADHD, and Guiding is one of the things we are using to support her social development. It's been really great for her.
Just a suggestion, obvs!
Very good suggestion. I did Brownies at one point in my life and haven't ever even thought of that option for my kids since I don't know anyone who does it. I think Lucy may totally love that, I'll look into that as well. Thank you!
I'll second Girl Scouts. My daughter is 9 and just started Brownies this year. She came home with the paper from school and kept reminding me about the meeting date. She doesn't have special needs, but she isn't athletic or very coordinated. So she isn't into sports, dance, or gymnastics. All of which we signed her up for and she hated. So when she wanted to do Scouts, I went with it even though it's out of my comfort zone and something I'm not super interested in. She loves it and I love that she really took ownership of it, reading the paperwork and being on me about the meeting.
Glad to help if I can! Lucy seems pleased as punch with what you and Dave have sorted for her currently!
Hi. I was just catching up with your blog and noticed that Lucy has to get really close to the music to read it while playing piano. I was just wondering, have you considered using the Suzuki method? They really emphasize learning by ear, not just by reading, which might be easier for her. There might be other methods that emphasize learning by ear more, but that's the one I'm most familiar with. Just a suggestion!
I don't know why I've never really thought about this, man I'm thankful for blog readers! Lucy has a really great ear but I've been continually more worried about her as your're right, she does need to get closer and closer to the music to read it. The Suzuki method may be the answer.
I love this post! You are such an amazing advocate for your sweet Lucy. Thank you for your constant inspiration.
xoxo
You don't have to do everything privately. I live in Il and we do many activities through an org that provides camps and clubs and activities and sports for kids and adults with special needs. They also provide in theory an aid for a child who wants to do a regular park district activity depending on circumstances. All the kids don't need to have the exact same challenge in any particular group. One of the great things is it's a place where my son can be accommodating for another student instead of others making a way for him to play.
I love that. I love any opportunity for Lucy to be able to look out and love others as others have done so much for her. I'll have to research to see if I can find something similar here.
What great activities you've found for lovely Lucy! What you have written is good reminder for all of us to find what is right, fun, good for our kids in terms of activities; not just what we think they "should" do. I had an experience this week of my youngest son being too intimidated/anxious to participate in an activity that was totally age appropriate for him. He said "mama, I'm just not ready yet." I just have to accept that without pushing.
Love this, so true that we need to really "know" these kids of ours to figure out what's best for them individually. Sometimes it can be so tricky! I'm so glad your son was able to articulate his feelings so well…and that you were able to listen! xoxo
This is so sweet!! You are a great mom!
xoxo
You inspire me and Lucy is so lucky to have you!
xoxo
You are a wonderful mother. Thank you for your great example. You inspire me to be better. Truly.
Someone else here has suggested horseback riding and I could not agree more. Learning to ride and care for horses is a fabulous confidence builder and a wonderful form of exercise. I don't recall hearing about anyone else in your family being riders. Maybe this can be her special skill and talent?
My daughter also has a visual impairment but loves music and has a great ear. For piano, I often make an enlarged copy of her sheet music so she can see it more easily from the bench. I've also found that the fact that that the book sits at an angle makes it hard for her as well and we have resolved this by using a clipboard that is propped to be more straight helps as well. My daughter also plays the cello and her teacher uses the Suzuki method. Her visual impairment seems to be a complete non factor for her on her cello and the fact that she could feel the stickers her teacher put on the finger board to let her know where to place her hands helped as well.
Shawni,
I just want to say thank you for being a "mentor mom" for me going on several years now via your blog. I began reading your blog when we were just starting our family (8 or 9 years now?!) and I have woven so many traditions and insights from you into our family and into my parenting. From heart attacking our house for fhe every Valentine's Day to memorizing poems and scriptures as a family, you have left a mark on us. I am so full of gratitude for you sharing your life with us and helping other moms and families along the way. Give that sweet Lucy of yours a hug from Northern VA. ❤Murray, Melanni, Kasen, Natalie, Eli, Corbin, and Pierce.
So smart! That art is astounding. Love what is coming out of that wonderful artistic mind!! Thanks to you and Dave for having such creative minds for Lucy's sake. Putting the puzzle together on how our kids think and learn in their unique minds is a great reminder for all of us! Love!