Mother As the Giving Tree: Reflections on Conditional Acceptance

Posted on by Astrid

Hi everyone. Last Monday, I attended an online meeting for adults who spent time in the NICU as infants. It touched me on many levels. One thing that was mentioned was the fact that most NICU parents go through their own emotional process, which then is passed on somehow to their child in the NICU and beyond. For example, many parents back in my day and before didn’t know whether their baby would survive, so they didn’t attach to their babies as they normally would have.

I was also reminded of something I read in the book The Emotionally Absent Mother. In it, motherhood is compared to the giving tree in Shel Sinverstein’s writing. I don’t think I’ve ever read this piece, but its point is that the tree keeps on giving and giving and expects nothing in return.

I have been thinking about my parents’ attitude to me as a multiply-disabled person. When I suffered a brain bleed in the NICU, my father questioned my neonatologist about my quality of life and what they were doing to me. “We’re keeping her alive,” the doctor bluntly replied. My father has always been adamant to me that he wouldn’t have wanted me if I’d had an intellectual disability, because “you can’t talk with those”.

I have always felt the pressure of conditional acceptance. I’ve shared this before, but when I was in Kindergarten or first grade, it was already made clear to me that, at age eighteen, i’d leave the house and go to university. I tell myself every parent has expectations and dreams for their child. This may be so, but most parents don’t abandon their children when these children don’t meet their expectations and certainly not when it’s inability, not unwillingness, that drives these children not to fulfill their parents’ dreams. Then again, my parents say it’s indeed unwillingness on my part.

I still question myself on this. Am I really unable to live on my own and go to university? My wife says yes, I am unable. Sometimes though, I wish it were within my power to make my parents be on my side. Then again, the boy in Shel Silverstein’s writing didn’t have to do anything to make the tree support him either.

I’m linking up with #WWWhimsy. I was also inspired to write this post when I saw Esther’s writing prompt for this week, which is “giving”.

Kymber’s Get to Know You (January 9, 2025)

Posted on by Astrid

Hi everyone. I have been quite tired over the past few days, so didn’t do much writing. I’m still proud to say that this is my sixth blog post in January. Considering that some months in 2024, I only published five posts total, this is good.

Anyway, regular readers may remember me participating in the Wednesday Hodgepodge for a while. I stopped doing that, because I didn’t like it that the overwhelming majority of participants’ posts were heavily Christian-based. Now though, I seem to have found something to replace it with: Kymber’s Get to Know You. Here are the questions for this week and my answers.

1. What is the most memorable activity you did with your family as a child?
Not an activity we did as a whole family, but play-based learning with my parents comes to mind. For example, my father taught me to calculate squares using computer chips he’d been removing out of the devices himself. I also remember us looking at maps together. My mother also made little books in large print for me to learn to read when I was about four. Here in the Netherlands, children don’t usually learn to read until they’re six, but I was a precocious learner. My parents will probably be proud to see me list these “intellectual” activities.

2. What quality do you appreciate most in a friend?
Acceptance. I want to be myself with a friend and if they aren’t willing to accept that, fine but they aren’t my friend. I will also accept my friends for who they are. I don’t mean that mutual annoyances can’t happen. They happen between me and my spouse, who I consider to be my best friend, all the time. However, when it comes down to it, we accept each other for who we are.

3. What is one characteristic you received from your parents you want to keep and one you wish you could change?
My mother jokes that I inherited all my positive qualities from my father and all my negative ones from her. I was almost going along with it, because indeed the first positive characteristic I thought of comes from my Dad and the first negative one from my Mom. However, I’d like to boost my Mom’s self-esteem a bit (should she ever read this) and lessen my Dad’s. Therefore, I’d like to keep my Mom’s creativity and get rid of my Dad’s snobbishness.

Exploring “Safe Ground” in a Less Than Optimal Care System

Posted on by Astrid

I’ve been exploring the concept of “safe ground”. This is a buzzword in the long-term care sector, particularly in the care of people with severe challenging behavior. It is used to describe the idea that people are unconditionally accepted in their care homes and will not be kicked out for their behavior.

I’ve been feeling drawn to this idea, because I’ve been kicked out of services, or out of the particular service I used, for my behavior several times.

One video I watched on the topic of “safe ground” explored a care home for the most severely challenging individuals. As in, there are only 24 places in the entire country. I don’t know why I was drawn to this video, because I’m not nearly the most challenging resident on grounds here, let alone among the top 24 of the country. In fact, I would say that at least one of my fellow residents here at my home is more challenging than me.

There are two concepts to unpack here, which may or may not be related. The first is, why do I identify so strongly with the most difficult of clients in the care system when I’m probably somewhere in the middle? The second is, is “safe ground” only the idea that people won’t be kicked out for their behavior, or is it more generally speaking unconditional acceptance of clients with their unique needs?

I’ll explore the second concept now. I think “safe ground” means more than just not kicking out clients, and in this respect, it’s relevant to me. I think it means (or should mean) seeing the unmet needs behind challenging behavior. Seeing the person rather than the client. I still think that, even if I don’t end up being kicked out of here for my behavior, there’s still a world to win here. I am hopeful that, when the things we discussed a few weeks ago at the meeting between my support coordinator, behavior specialist and me, will be implemented, we’ll get close.

That being said, it’s still 2024 and this means no optimal care for anyone. I think one of the things I wish people would admit is that they’re having to deal with a strained system rather than blaming the client for their challenging behavior.

I ran into this yesterday, because there’s yet another change in staff hours, and yet the other support coordinator claimed everyone gets the attention they need. No, that’s not true, or it depends on how you define “need”. After all, most of us do mostly get our needs for physical care met, by which I mean we get dressed, showered and have something to eat. Most of us however are still routinely left to fend for ourselves when we’re struggling emotionally. I and the more challenging fellow client are the lucky exceptions to this rule. Even so, I would not call my care optimal. That isn’t going to happen and that’s sort of okay, but it makes a massive difference whether staff blame me or they blame the system. In other words, are we talking about things we as clients shouldn’t expect or things they cannot offer? The end result is the same, in that we have unmet care needs, but the latter is a lot more empathetic towards us.

#WeekendCoffeeShare (September 4, 2021)

Posted on by Astrid

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Five Favorite Feelings #5Things

Posted on by Astrid

Okay, this is going to be a quick post. I want to write, but honestly have little idea what about. For this reason, I am taking up DrTanya on her #5Things Challenge. This week, the topic is favorite feelings. Here goes.

1. Delight. When I find myself in a happy flow, I can truly be delighted at things I do. I love this feeling of high energy combined with joy.

2. Inspiration. I truly love it when new ideas keep flowing. Currently, this is not the case, as you might guess from my needing to go with a meme for a blog post. That is, in the writing department, I’m not too inspired. In the crafting area, I definitely am.

3. Gratitude. It’s so great to be able to feel thankful at every possible opportunity. It is also a feeling I find is relatively possible to cultivate. In addition, I truly appreciate it when others show gratitude towards me.

4. Satisfaction. When I’m satisfied with something I’ve accomplished, it truly makes me feel great. Unfortunately, I’m a bit of a perfectionist, so I am not easily satisfied with myself.

5. Active acceptance. This means accepting a situation as it currently is, but being open to the possibility of being able to change it. It is walking a fine line between resignation and resistance. This is probably the hardest attitude to achieve for me, but I’m working on it.

What are your favorite feelings?

Dear Autism Parents: On Unconditional Acceptance

Posted on by Astrid

I just read an essay in What Every Autistic Girl Wishes Her Parents Knew and it touches home with me. In it, the author, Haley Moss, mainly describes how she feels parents need to ucnonditionally accept their autistic daughters. She particularly emphhasizes the need to support the girls’ special interests even if they’re not age-appropriate or girly. Boy, do I want to tell my parents this. It’s too late now, as I’m 32 and have half a lifetime of conditional love behind me already.

Moss herself too was encouraged to develop age- and gender-appropriate interests as a child. She recounts a fourth grade memory of being advised to trade her rare cards for Bratz dolls. I have no idea what they are, but I remember in fifth or sixth grade also being encouraged by my mother (in not so subtle ways) to trade my Barbie dolls for pop music CDs. After all, Barbie dolls may be girly but they’re not deemed appropirate for an eleven-year-old.

The negative effects of one such incident, like Moss experienced, can be undone by a greater occurrence of open acceptance of the autistic’s special interests. For example, Moss’ paretns eventually affirmed her interest in video games. In this respect, I felt generally okay about my interests in fifth and sixth grade, because, though my mother did not support my playing with Barbie dolls, my father did support my drawing maps.

As a general rule though, I have commonly felt only conditionally accepted by my parents. This is reflected in constant victim-blaming when I was bullied. They were at least somewhat consistent in that, in that at least my father spoke negatively about the intellectually disabled girl whom I bullied too. Of course, he set an example of ableism by doing this as much as my parents did by victim-blaming me.

When I went into college to major in applied psychology, I still got my parents’ reluctant approval. After all, though my major wasn’t that well-liked by them and my college wasn’t as prestigious as they had wanted for me, it still was college. Since having experienced my breakdown in 2007, it’s pretty clear my parents are not there for me anymore. That’s sad, but it’s true.

The saddest part about What Every Autistic Girl Wishes Her Parents Knew is, unfortunately, that those parents who most need to hear the messages in it, will not read it. My parents don’t even think I’m autistic despite my having been officially diagnosed half a dozen times. Other parents may’ve gotten the diagnosis but choose to join the likes of Autism Speaks and shout “You are not like my child!” at every autistic adult trying to educate them about acceptance. That’s so sad. However, if some parents are helped by this blog post or by the book in showing unconditional acceptance to their children, that’s already good.