Looking for parenting advice (Nov. 22)
It’s been a while since we’ve blogged. The short version of our life is that we are lucky to have two amazing kids who make us laugh 
every day. Ida has developed a gleeful giggle, and Lucas’s sense of humor just keeps getting better and better. He’s into telling jokes (“What did the dung beetle say to the toilet? You look a little flushed.”) But even more than learned jokes, he has an incredibly ability to notice each person’s idiosyncrasies and then tease us with them at exactly the right moment. The other day his cousins and Aunt Ashley were here visiting, and Ashley was trying to get the girls out the door. As they were putting on their shoes Lucas shouted “Bye, ladies!” He was parroting Ashley, and his delivery was so spot-on that we all cracked up. Lucas beams when he makes us laugh. His cousin Tya responded “Bye, man!” Hours later when Lucas and I were out, I looked in the rear view mirror of the van and saw Lucas smiling to himself. When I asked him what was so funny, he said he was just remembering Tya’s response to his joke.
But another component of the story of our life right now is that it is brimming full, sometimes with wonder, but also sometimes with overwhelm. First grade has been much harder than kindergarten or preschool for us. School is really the one time that Lucas is out in the world without Burke or me – a really important experience in and of itself for a six year old. And I know Lucas loves it – he’s disappointed when his insomnia means he can’t make it to the end of the day at school, or when he has to miss school for doctors appointments.
But for Lucas to be out in the world, he needs a lot of help. Lucas needs help to do everyday tasks that most of us take for granted – reaching out to shake hands, or grabbing an item someone is passing his way; readjusting his position in a chair when he starts to get uncomfortable; turning to look at a person next to him who is speaking; turning to look behind him if there’s an unfamiliar noise; looking down to see an item on a table; adding or taking off layers if he’s too hot or too cold; moving over toward someone he wants to see; moving away if someone is annoying him. Burke and I can’t quite read his mind, but we are so in sync with Lucas that in most any setting we can guess what Lucas is going to want to do, give him choices, and then go do it. Of course we have our less-than-perfect moments where our own needs, or our whole family’s needs, trump Lucas’s for a moment. But he knows we’ll eventually push him over to where he wants to go, or turn his head so he can see, so he keeps asking us until we do it.
With other people, though, I see him get quiet. So if you’re not actively engaging him, giving him options and then asking again in a way that makes sense to him, he sometimes gets passive. As I see some of the people around him not doing enough to keep him included, and then see him accept that treatment, my heart breaks. I know that he wants to play with other kids, or that he wants to go up to his teacher and tell her that he just figured out her name is a “wumber” (word+number, meaning a word you could write it with a number, like “a10tion” or “1derful”.) One morning before school he told me he wanted to ask his teacher about her trip. I said that was a great idea. He then asked if I was going to school with him so I could help him ask her. I felt so sad that he has so many adults around him at school who could help him, but for a myriad of reasons – like that he doesn’t have confidence they will understand him or even do what he asks – he might just skip trying to approach his teacher all together. I don’t know what to say about all this to Lucas, so I just remind him to tell the people around him what he wants and needs.
Some of these things are probably universal to parenting. You have to let your kid out of your sight and trust they’ll be OK even when the adults around them aren’t perfectly attentive to their needs all the time. But some of this is specific to disability, since Lucas is so heavily reliant on the people who help him. So we’re starting to work with Lucas on self-advocacy, and one of the therapists at school came up with a great framework for doing that: being a “superhero” who stands up for his rights. But standing up for myself is hard enough as an adult, so how should I expect my kid to do it? Nonetheless, we’re talking about it, and he is getting better at telling us what he needs – like, if can’t see the words on the book we’re holding up for him, he now tells us which way to move it. Still, I’m not convinced that all the adults in his life are giving him the positive reinforcement he needs to develop this skill.
And so I have a question for our blog readers, especially those of you who grew up with a disability: as you reflect back on the ways your parents did or didn’t support you, what did they do well for you to prepare you for the underwhelming adults in your life? What more do you wish your parents had done? I’m realizing I can’t force people to love Lucas and work as hard as we do for him, but even that realization is heart breaking for me. So I guess my second question is for parents who have been through this: what have you done to live with letting your child out of your care at times, even when it wasn’t ideal?
I sat down last night to write a letter to an older Lucas to tell him how amazing he is. He blows me away regularly, and although I tell him now about how much I admire him, he’s too young to get it. (I tell him he’s totally amazing, and he just says “Aw, thanks Mommy,” in a voice that perfectly parrots the way I talk to him.) While I spend my time stewing about how to force people to love Lucas and do their jobs 110 percent all the time, Lucas kills them with kindness. On Thursday at school they were talking about Thanksgiving, and the teacher invited all the kids to say something they were thankful for. Lucas said “I’m thankful for the people that help me.”
Comments (8)
Jocelyn
December 23rd, 2015 at 7:21 am
Krista, what a powerful post, and what an amazingly beautiful relationship you have with Lucas.
If it were me, I would totally give in to the momma bear instinct and make clear to the adults in Lucas’ life exactly what you expect them to do for Lucas during their time together–kindly, but also clearly and forcefully. And I would reinforce that message regularly. And I would ask for a debrief at the end of the day, asking Lucas’ assistants in what ways they were able to support Lucas in his interaction (this could be in the spirit of, “we are a team, what did you learn about Lucas that could help me, and here is what I learned recently that could help you, etc.).
FWIW, my son struggles with learning/social interaction, and I initially tried to be very respectful of how the adults at school handled his difficulties, but eventually he was coming home in tears regularly, I was deeply angry, and I knew their approach was not helping and indeed might be hurting my son’s well-being. I decided then and there that I was going to be a powerful, omnipresent, respectful, but unrelenting force of advocacy for my son. And I don’t apologize for it. Ever. And things have gotten significantly better. And surprisingly, the teachers who I originally was the most frustrated with have now become my biggest allies. Ends up, they really appreciated my insights into how to make life work better for Jackson.
I don’t say this to give you more work–you are amazing!!! And you and Burke have been the most powerful advocates imaginable for your son in every way, in every arena, since before he was borne. I only say this in the spirit of school, and in the spirit of, if you ever feel like you want to say something, then my vote is to go for it. Say it. Demand it. Trust your gut. If something needs fixing, then you have every right to expect it is fixed. I don’t think this in any way limits Lucas’ incentive to advocate for himself. I know you are always encouraging him to speak his mind. But that doesn’t mean you can’t also work with the staff at school to give him every opportunity to do that speaking.
Hope this is helpful–it’s honestly kind of hard to write about in a way that doesn’t sound prickly, but at the end of the day, I’d say that I’ve never regretted acting on momma bear instincts when it comes to my kids.
Good luck, and enjoy the winter holidays!!!!
Harold Gomes
November 28th, 2015 at 8:04 pm
Well, as I was reading the blog post, I immediately thought of my own experience in school… I had a similar experience as Lucas. I had difficulty relating to other students because I needed so much help. Having muscular dystrophy is very different than say, being a paraplegic because it requires assistance for doing simple tasks. Not being able to physically reach out makes it difficult to reach out socially. I also withdrew because I thought that the other kids wouldn’t be able to understand and relate to me. It’s very important for teachers to try to integrate kids with disabilities and help them to participate in activities, discussions, etc. When this didn’t happen for me, I didn’t know how to advocate for my self, like “Hey don’t forget about me! I’m part of the class too!” I think that school counselors can help with this, provided they don’t put the child on the spot and cause occasions of feeling humiliated. I’m kind of rambling here but I hope it helps in some way. In my situation, I really needed my parents to encourage me to do everything I was able to do on my own, and to let me know that it’s okay to ask for help, or even to ask to be included. Later, I began to understand that it’s all about knowing the difference between what I physically can and can’t do… Parents need to know the difference between the two. It’s really awesome that Lucas is so kind and understanding in dealing with these things. I have to think about this more and get back to you. I know that I didn’t give too many answers… all I know is, I got better at advocating when I started to really believe in my self-worth and this was the fruit of believing that I was loved unconditionally by God—that’s the only way I can put it.
mairi
November 28th, 2015 at 5:27 pm
Dear Krista!
What an amazing writer you are! I think you should continue just what you’re doing with Lucas, reminding him again and again that he is brave and smart and good and resourceful, and that it is sometimes hard for other people to understand what he (or anyone really) wants! Also, I think you should show this blog post to the people who work with him at school. If I was one of his teachers, I think I would be interested, and it would inspire me to be more vigilant to his needs. You’re doing such a fantastic job!
Love,
Mairi
Julia Sanders
November 28th, 2015 at 11:17 am
I can possibly offer more thoughts in a future comment, but here’s what comes to my mind immediately: i think one of the things that many parents of disabled kids are not prepared for is that to have a disabled kid and then watch that kid interact in the world is to see them suffer. To encourage your kid out into the world is to see them come up against tremendous, daily disempowerment and ableism left and right. I don’t think that there’s nothing to be done about this, but I also think that these forces are sadly so much deeper and more powerful than most able bodied people realize. My parents saw my suffering and they turned away from it and pretended it wasn’t happening. This amplified my suffering so much. My parents spent so much time telling themselves that they could prevent my suffering, but they couldn’t. I would much rather a parent says instead of “my child will not suffer” – “my child will not suffer alone.” I appreciate so much that you’re thinking about this and I think you reaching out to community to help guide you right now is a great model for Lucas. I know it’s not simple but I think one of the things that would have helped me tremendously as a kid is to acknowledge that suffering – to name it and to frame it as what it is – unfair, disempowering, mean, scary. I wonder if there are ways you can call on the wider disability community to find some of ‘his people’ for Lucas as is age appropriate. I’m thinking about the “Dear Julianna” project and how many disabled folks wrote incredible letters of allyship and support – perhaps some of those words are worth reading to Lucas. Well I see I’ve written a small novel so will wrap up for now but am glad to keep holding this question with you. Sending much love to your family.
Jeannie Brown
November 28th, 2015 at 5:14 am
First, Krista, I want to tell you and Burke how amazing you are as parents. Lucas and Ida are truly blessed to have both of you as parents. Three years ago I watched a video of a woman who learned to use a computer to communicate, who happened to have Autism. She put words to her behavior and explained what was going on and what she was thinking. It was extremely profound. What I took away, was she said, people needed to learn her language. Perhaps, explain to Lucas, it takes time for people to learn his language and that he needs to continue being his superhero.
I think about how I am able to meet Lena’s needs, but that is because we are constant companions. It is exhausting for others to learn this communication and they get bored. I suspect that the other adults in Lucas’ life get exhausted trying to learn his language.
Lucas is engaging and will find the people who are willing to take the time to learn his “language”. He is a beautiful and smart child!
scott winn
November 25th, 2015 at 4:23 pm
thanks for sharing this krista….and thanks for your example. would love to chat about this and everything sometime with you…..love from, scott
Allen Hines
November 25th, 2015 at 7:27 am
Incredible post, Krista. First of all, I’m learning about psychological development right now, and it’s really helpful that you and Burke ” can guess what Lucas is going to want to do, give him choices, and then go do it.” That can be a huge support for anyone with mobility impairments but particularly for grade schoolers. Ideally, teachers and school counselors would also take that approach and recognize extra supports Lucas needs. You’re seeing that that often doesn’t happen for various (often systemic) reasons. Building self-advocacy skills was huge for me in learning/knowing that I’m a rad, fully worthy disabled person. My learning self-advocacy, though, has caveats – one being that I felt that it was my responsibility to change whatever oppressive system I was up against. A superhero might be able to change oppressive systems in a single bound, but a single disabled person can’t, I know now. As a kid, though, taking that level of responsibility was really hard and lonely. I like the idea that I’m part of a team alongside close friends and helping professionals that is committed to challenging disability oppression. For me, that feels healthier than thinking of myself as a superhero. The other caveat that I’ll mention is that it took me a while to learn effective self-advocacy. I think modeling effective confrontation is important for young people. I grew up with parents who would flip their lids often when dealing with oppressive situations, and lid-flipping was the skill I had when I was starting to live independently. Not so effective, let me tell you. I need to wrap up. Have you and Lucas looked into adaptive communication?
Kristin Lasher
November 23rd, 2015 at 10:04 pm
Lucas, I loved reading the last blog your mom wrote. I am thankful for people that help me too! What a wonderful world this would be if we observed and helped each other. I’d like someone to clean out our garage because I am allergic to some fungus in there. Have a nice Thanksgiving and send me a “turkey joke” and I will send you a joke too. Kristin, an old friend of your grandparents.
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