Reasonable expectations keep you focused on the bigger picture which helps you to be thankful for the smaller details.
I probably should‘t have read Carter’s preliminary neuropsych eval on Thanksgiving morning. His IQ has slipped from 62 to 58, which wasn’t unexpected. IQ is relative to your peers, so as typically developing youngsters age their learning curve gets steeper, meaning they’re able to learn deeper, more complex concepts. Carter’s learning curve stays flatter, so his IQ will drop relative to his peers.
His trajectory is now a mastery of elementary school concepts by the time high school ends, whereas he was earlier projected to max out at the middle school level.
Its not easy to be the parent of a child with special needs but knowing and accepting his probable trajectory makes it easier to go with the flow and let life take us where ever it does.
This understanding allows me to be thankful for his sweet spirit; the incredible empathy he displays for animals, friends, and strangers; and his enjoyment of listening to music while dancing around all silly and giddy. (He gets that last one from me.)
The 2011 Korean film “Silenced” is based on actual events that took place at Gwangju Inhwa School for the hearing-impaired, where deaf children were the victims of repeated physical and sexual assaults by faculty members over a period of five years in the early 2000s.
A newly appointed teacher at the school alerted human rights groups in 2005, and was subsequently fired from his job. This teacher was the first to come forward about the abuse he’d witnessed, as the school specifically sought out poorer teachers who would be completely dependent on the school for their financial security and therefore less likely to turn against the administration.
Nine children eventually came forward, but more victims were believed to have concealed additional crimes in fear of repercussions or because of trauma. Children who were orphans or who had disabled parents were targeted specifically, and children who tried to come forward were sent back to school and disciplined by the faculty.
During the trial, the perpetrators received support from the local community, especially from the police and churches in the community. Of the six perpetrators, four received prison sentences, while the other two were freed immediately because the statute of limitations for their crimes had expired. Among those jailed, two were released after less than a year in jail. Four of the six teachers were reinstated in the school.
The film sparked public outrage after its 2011 release, which eventually resulted in a reopening of investigations into the incidents. The school was shut down, and several of the teachers pleaded guilty to sexual molestation charges, including the former principal, who was sentenced to twelve years in prison. The demand for legislative reform eventually reached its way to the National Assembly of South Korea, where a bill (named after the film) was unanimously passed in October 2011 to abolish the statute of limitations for all sex crimes against minors and the disabled.
The film’s ending scene is a protest that occurred following the suicide of a thirteen-year-old victim after the trial in 2005. As the crowd of human rights advocates and deaf people face brutality from the riot police, the fired teacher who initially came forward (who, along with a human rights activist, helped the victims through the trial process) repeats the name of the victim who’d committed suicide, saying “he cannot hear or speak.”
Don’t ever tell your child what you’ve given up to take care of them. Please, don’t ever say to them, “I do everything for you.” Even if it’s in a moment of anger, hold your tongue. It’s not going to serve a purpose or teach them anything.
These words hurt more than you know and they are not easily forgotten.
Stop vilifying adults that live with their parents.
We’re still deep in one of the worst economic recessions of modern times. For many of us its not a choice but a requirement in order to survive. For many of us we have disabilities that make finding accommodation that suit our needs a lot harder and a lot more expensive.
Many of us pay into the household. Many of us are trapped in abusive households because we don’t have the means to leave. We aren’t moochers or afraid to leave the nest. The world simply isn’t built to support us anymore.
Can’t remember if I wrote about this already, but recently my 8yo NT daughter roped my 10yo ND son into playing restaurant with her.
Sister spent hours creating a menu, rearranging our porch furniture, picking flowers for tablescapes, creating fake food and drinks, making a hostess stand and cash register. She was so invested and proud.
Bubby either rode his bike or played inside while he waited for her grand unveiling ceremony because he quickly got bored with the game. After seeing the results of her hard work he immediately asked, “how would non-verbal people order?” (I guess he overheard me ranting about an Autism Mom not wanting her small daughter in a classroom with “scary, non-verbal boys” who would damage her daughter’s progress… :::RAGE::: …sorry for the tangent).
Now Sis could have gotten pissed about his seemingly unappreciative rejection of her hard work. Disabled people and other minority groups get treated like ungrateful shits all the time for simply asking that their needs be considered and met.
But instead they put their heads together to work on making their restaurant more accessible. They ended up redesigning the floor plan for wheelchairs users. They drew pictures on their tablet drawing programs for non-verbal people to order. They added menu items for people with allergies. And this time my son got really into the imaginary play too. They spent 2 days playing restaurant and serving all the stuffed animals in the house, which was just adorable AF.
I just found it to be so humbling and sweet, and a really good example of how people should treat constructive criticism. Build bridges. ❤
every time i talk about eugenics abortion being bad, people assume i want to legally ban or restrict abortion of disabled fetuses, instead of noticing that sex-selective abortion is a similar issue with similar solutions that have nothing to do with legal anything.
disability activists generally want the following things, in order to reduce eugenics abortion:
- no more pressuring pregnant people to abort disabled fetuses or shaming them for choosing to carry the pregnancy to term (in case you’re wondering, doctors absolutely do this)
- no more pressuring disabled and/or mentally ill pregnant people to have abortions or shaming them for choosing to stay pregnant (doctors do this too)
- no more devaluing disabled people’s lives in pro choice rhetoric, such as by bringing up disabled fetuses as an argument or “gotcha” when arguing with people who think all abortion should be illegal
- active valorization of disabled people and involving us in the leadership of pro-choice organizations
- pro-choice organizations addressing the prevalence of doctors and society pressuring people into eugenics abortions
- pro-choice organizations actively challenging and critiquing ableism in their movements, historically and currently
- establishment of better support systems for disabled parents and parents with disabled children
- better health care and better access to it
disabled people who criticize the eugenics abortion are not your enemies. we don’t want to force or pressure anyone to stay pregnant or to terminate. please acknowledge that it’s frankly terrifying for us when a fellow pro choice person directly defends the ethics of eugenics abortion to us.
The arm was designed and built just for Isabella by Team Unlimbited volunteer Stephen Davies. On average, prosthetics cost more than $10,000. However, an e-Nable limb ranges from $50 to $150 in price, which means more people can get prosthetic devices!
I’m sorry, you must have forgotten to check the little box on the baby-making form that said ‘cis, het, neurotypical, abled’-
are you fucking kidding me???
you sign up for everything when you decide to make a baby. you signed up for a trans kid, a gay kid, a depressed kid, an autistic kid, an aroace kid and a deafblind child. You signed up for everything from toddlers to teens and beyond. i’m not sorry if your kid isn’t the perfect, conforming child you wanted.
get off your fucking pedestal and stop blaming the children who are likely far nicer than you, even with their so-called ‘issues’.
My bio mom was chronically ill, neurodivergent, and an addict. She wasnt a good parent because of these things, and it made my childhood hard. I became her mom for a while. I cleaned up drunken benders, staved off severe panic attacks and psychosis, I collected my mom from the police when they brought her home. I stayed in the hospital through blood clots and transplants. She had a good heart, but it was clouded by how ill she was. When she passed away, it wasnt a surprise, it was inevitable.
My adopted mom is legally blind, If you ask her if this is a disability, she would say absolutely not. She’s always adapted to things very quickly and fought hard to get what she deserved. She uses all the technology she has available to her. Sure i might have had to do things differently sometimes, like point out stuff or read subtitles. But i always knew she was my mom. I asked her if anyone had ever questioned her ability to parent because of her vision, she said no.
However, its not uncommon for that to happen to disabled parents. They are 3x as likely to have their children taken away by CPS, they are more likely to be deemed unfit, and they are more likely to lose their children in a custody battle.
Most states do not have laws that prevent discrimination of this nature based on disability.
I personally know people who have had their children removed for months because they were disabled and therefore unfit parents.
Disabled people, like my moms, like my friends, and like me, are perfectly capable of raising children.
Happy mothers day to all disabled moms out there, keep fighting for your right to parent.
It disgusts me how many adults in my life have tried to raise me as a hearing person. It’s their secret way of saying, “No. We don’t accept this.” And to think how I’m not the only one. It happens to all of us, everyone, in different ways. And not just deaf and hard of hearing people.
A piece of advice for parents of kids whose disabilities are starting to become apparent.
You’re probably going to have to deal with a lot of people who don’t respect your relationship to your child very much. You know a lot about your kid, and you’re probably going to have to deal with a lot of people who treat you like nothing you have to say matters.
You’re also probably going to have to deal with well-meaning people who say things like “you’re the expert on your kid!!!”. This sentiment can be affirming in some ways when people aren’t taking you seriously, but it can also be toxic.
Taken literally, “you’re the expert on your kid” isn’t true — and it doesn’t need to be. Even aside from disability, kids are complicated. No parent understands everything about their kid. Every parent faces confusing situations, and every parent makes mistakes. Parenting kids with disabilities tends to mean being confused more of the time. That’s ok. You don’t need to be a perfect expert on your kid. It’s both impossible and unnecessary.
There will be times when you have absolutely no idea. When your kid is struggling and you don’t know why, and strategies you’re trying aren’t working. When that happens, you’re still your kid’s parent, and the relationship still matters. You’re not going to be an expert on every aspect of your kid at all times, and that’s ok.
Sometimes when you don’t know what to do, others have useful ideas. It’s worth being aware that good strategies tend to get developed in silos. If you’re only looking in one context, it’s worth trying more. For instance, there are things medical/therapy professionals often know, things adult activists living with the same disability often know, things teaches often know, and so on. It can also be worth looking outside of your child’s disability group — resources intended for one disability are often helpful for another, and groups don’t always talk to each other.
(This goes double if your child is autistic. Nothing disabling about autism is completely unique to autism; all of it’s shared with some other disabilities. Resources associated with other conditions are often better (and less behaviorist.).
All that said — you will probably face situations in which none of that helps. Sometimes you’ll seek out all kinds of perspectives and still find that nothing you’re aware of helps enough. When that happens, you may attract people who give you a lot of bad advice loudly. When you’re worried, it can be hard not to believe people who yell at you and tell you that they are experts.
Don’t get psyched out by professionals who try to convince you to stop thinking for yourself. They’re good at sounding right in intimidating ways. They often do not actually know what they are talking about. And ultimately, you are your kid’s parent, and all parents are clueless sometimes, all parents make mistakes, and you and your child are allowed to be human.
Similarly, as your child grows up, they will grow apart from you in some ways. That’s how kids are, and that’s part of how maturity works. Teenagers do things that their parents don’t understand. All the more so, adults do things that their parents don’t understand. Even in childhood, no one can really be a complete expert on another human being. Disability doesn’t change that. It’s not going to be possible to be an expert on your kid, and that’s ok. They’re a person, and so are you.
Tl;dr “You are the expert on your kid” is too much pressure. There’s a grain of truth, but it doesn’t reflect reality — and it doesn’t need to. There are a lot of unsolved problems in disability support — and in any case, no human being can really be an expert on someone else.
Making ear defenders available to your autistic child
I think most people would be surprised to know that my son has some auditory sensory processing issues. I’m purposefully not specifying hypersensitivity (being more sensitive) or hyposensitivity (being less sensitive), because the same person can experience both hypersensitivity and hyposensitivity in the same sense (auditory, tactile, etc.), from day to day or even from hour to hour (or different types of input - e.g. for auditory if could he different frequencies). Back in November 2015 my son told me that “sometimes I can’t hear quiet sounds, only loud sounds and very loud sounds and sometimes it is a problem for me.” That would obviously be describing hyposensitivity - but not all the time, and yet he is also obviously hypersensitive at other times, when he has put his hands over his ears.
He doesn’t tend to show any obvious distress for people to notice, but the signs are there if you are paying attention. (Again, this is a problem with the high-functioning / low-functioning labels and illustrates the argument against using them - people would look at my son and describe him as high-functioning (friends have!) but all that really means is that his struggles are less visible, not - as people seem to think - that he has hardly any or that they are “mild” and “nearly normal”, and that therefore he doesn’t need any consideration).
I had sometimes wondered about trying getting my son a pair of ear defenders, but not being very knowledgeable about sensory processing at that time, or how it affected my son (and I wouldn’t profess to be an expert now, just better than I was!) it wasn’t something I attached much importance to, he seemed to be managing fine.
Then (this was years ago) our family went to a fireworks display at a friend’s house. One of the guest families had brought loads of ear defenders for the kids to wear (most of them very young), so that they could fully experience and enjoy the fireworks without being scared by the loud noise. My son had coped with fireworks in the past by having hands over his ears, or being inside. Now he enjoyed using ear defenders in amongst lots of other children doing the same, and it was brilliant! As the family left with all the ear defenders, I thanked the mum for bringing them, and she insisted on gifting me a pair for my son, which was such a lovely thing to do and I am so grateful for. They’re not used a lot, but when they are used they are so helpful!
Examples of when the ear defenders have benefited my son:
Vacuuming. Before I get the vacuum cleaner out I always warn my son and ask if he’d like his ear defenders - he always does, and is perfectly happy being in the same room as me vacuuming with his ear defenders on - he’s even enthusiastically joined in and helped me before :)
Extra quiet time. His ear defenders live hooked onto the side of his bed. He has occasionally worn them in bed whilst reading before going to sleep.
Supporting a friend of my son’s playing a musical instrument he was learning, by watching him perform in a mini concert. My son was perfectly happy watching with his ear defenders on.
When my daughter wanted me to take her and her friends on a shopping trip to a busy indoor shopping centre/mall on a Saturday afternoon. My husband was out for the day so I knew my son would have to come with us and it worried me. My daughter had newly started high school and made new friends so I didn’t want to have to say no to her for her first ever shopping trip - she’d organised it and it was really important to her, but my son and I would have to accompany them to each shop, mostly waiting outside. I took my son’s iPad with us, and also packed his ear defenders. I think the ear defenders were invaluable! He chose to wear them the whole time we were there, with his zip-up hoodie’s hood up over them, which concealed them a bit. Near the end, he didn’t have the hood up, and I noticed that I seemed to get a few sympathetic glances from people which I found disappointing, but I was proud of my son for feeling confident about wearing them visibly. I had expected us to have to leave before my daughter and her friends had finished shopping, but we didn’t, and I think having the ear defenders with us was a big reason for that. (My son and I also took a break in a cafe before the end, something he’d been keen to do as part of the trip, and he’d used his iPad whilst waiting for the girls to come out of shops.)
So even if you think your child is coping without ear defenders, they’re easy to obtain and not expensive, so you could give them a go. Let your child try them out, explain that people from various occupations use them in their work, for example builders on a noisy building site. It doesn’t cut out all sound, just makes it less. Make them available to your child and let them express when they want to use them, you’ll be giving them the power to make their environment more comfortable when they need to.
Any advice on how to approach tough conversations with my parents without getting overwhelmed and crying?
-Keep in mind that not every discussion is a fight. It doesn’t have to turn into a fight.
-Think about what you want to say on beforehand. You can write your ideas if possible so you don’t miss any point or get lost within the conversation.
-Tell your parents that you want to talk about something important. Schedule a brief time with them in which they can give you their attention.
-Let them know why talking about that subject is important for you.
-Your emotional well being goes first. If the thing is getting ugly you can ask to pause the conversation and re take it when everybody is more calm (this particular tip has made wonders in the relationship with my mom).
-Keep your voicetone calm but steady. Don’t shout, and try to not get heated. Remember that it’s a conversation. Don’t get defensive even if they do. The outcome might not be what you wanted and that might be frustrating but try to stay calm.
-Some phrases that might help are:
“I would like to know what you think of (the subject)”
“Why do you think that way? What are your concerns?”
“I understand why you say it but I do not agree”
“From my point of view…”
“I would appreciate if you could give thought to (subject)” and negotiate a partial agreement
“I don’t agree with that but I respect your decision/ will support you”
-If things don’t go your way you can always try again when armed with resources.
And even if the outcome isn’t what you wanted I am already proud of you for speaking out. I believe you and support you.