Jump to content

Recommended Posts

They agreed to revise the timeline for my son to match the heath dept definition of when my daughter needed to begin isolation, so he can now come back on December 6th. Also the district announced they will have a "test to stay" option for kids who are exposed starting 12/6. FML.

My daughter is no longer symptomatic and her 10 days is up after Thursday, so we will make Thanksgiving one day late so she can join us. Poor kid has been holed up in her room and has been a pretty good sport about it (ok, Dad also bought her a TV Friday night so that probably helped).

My son continues to test negative, so I think we've done a good job isolating her. We are going to test him again on Monday unless he becomes symptomatic, and I have an at-home test that we can use. I moved the kids vaccine appointments to 12/3. I wanted them fully vaccinated by Christmas but hopefully this is close enough.

Link to post
Share on other sites
  • Replies 294
  • Created
  • Last Reply

Top Posters In This Topic

Top Posters In This Topic

Popular Posts

Didn’t really want to make a new topic so I thought I would post this here. After nearly 4 years of hard work, literal blood, sweat and tears, failure and self doubt, finally came the culmination of a

Boom—got Jacob’s old SNES going.  I figured out you have to firmly push the cartridge in to get it to work.   It was Bennett’s 5th birthday.  I have realized how far toys have come.  You can

She made it, so I can breathe again. Apparently one girl from their team did get cut. I'm hoping it's the anti-masker dad's kid because she didn't even come to tryouts, but we haven't seen her since D

Posted Images

We checked out a new soccer team last night in our new town. She was really excited and then got super nervous. She did a good job listening and paying attention. She is a touch rusty, but I think confidence was the biggest issue. She is just still so broken. A girl showed up late and is apparently the team pain in the ass. She started trying to pick on my daughter and the rest of the team was like whatever, Jenna, that's dumb. It was clear that the coach was annoyed by Jenna, too. He had to ask her to stop picking dumb fights more than once during practice. He seems to be handling it well but I bet he hopes that kid doesn't come back next season. The coach seemed to have a sense of humor at least, which a lot of the guy coaches at her old club did not. He's not laying into his problem player but he's also not letting her get away with it. The atmosphere also seemed less intense and the girls seemed to get along. My daughter said there were like 4 nice girls and the rest she wasn't sure about (I think 4 confirmed nice girls out of 10 and only 1 that was an asshole that everyone else ignores is a pretty good ratio, as opposed to like 3 straight-up ***holes on her previous team). She got invited back, though, and coach said we could continue to check it out and not commit for a few weeks. I noticed the skill level was a little more even (no one big super star) and they had a few girls that actually have some strength with their passes and shots (previous team had this ridiculous style where everything was a short wimpy pass so teams would just collapse on them and eat their lunch). I also liked that this team had fun but also had a good work ethic, which the other team was overly serious and had some girls that did not want to work hard.

I'm trying not to push it too hard, but I don't have many options elsewhere for her. Her old rec club is down to one team and they are bottom of the lowest division, so that is not a good match. I could try the rec level of this new club, but everyone tells me she is too good for rec. I just need my girl to get her mojo back. Part of me wants to sign her up for lacrosse but I also don't want to pay for facial reconstruction, either.

Link to post
Share on other sites

Also my son went to his neuropsych evaluation today. We were looking at potential dysgraphia and a more specific ADHD profile. As soon as I got home, the psychologist sent a screener for autism.

I'm going to admit I don't know what the hell I am going to do if its autism, too. Most people who have worked closely with autistic children have told us he is not. My husband's half-brother has autism but he was like the polar opposite of my son. I know there is a lot of overlap with ADHD and autism, but I've always been able to attribute all of the ASD red flags to ADHD. And he's just so freaking personable. I mean yeah sometimes he's a pain in the ass but most adults who aren't our parents or his teachers tell me he's unbearably cute. The whole social communication aspect feels like its missing. The teachers at his first school went so far as to say he did not have any social communication difficulties and used that as justification to kick him out of the program. He sure wasn't autistic enough for them.

The other thing is I really don't know how I feel about ABA therapy. There's so much controversy around it lately and a lot of autistic adults claim its abusive and that they should just be left alone. I get that they are speaking from experience but also, people have to be able to function in society. My husband's brother had ABA and it was life-changing, but I don't know how he actually feels about it now as an adult. Occasionally I catch my husband saying things like "sit down and put your hands in your lap" and I know that's an ABA script that he must've learned for his brother and it really gets to me. Why do these kids have to start with hands in their lap when they're distressed? How is that actually a comforting behavior? I also don't think our experience with autism/ABA experts has been very positive. So if I don't think ABA is a good therapy, what good does an ASD diagnosis do us? I've felt for a long time that if I wanted to shop for an ASD diagnosis for him, we could get one, but honestly, it feels lazy and like a badly fitting pair of shoes. I would honestly be more accepting of Tourette syndrome than ASD at this point.

Link to post
Share on other sites

ASD is such a spectrum, you really can't compare one person to another. I actually know several very personable people with ASD. Luke is likely on the spectrum as well, and he's incredibly outgoing and friendly to strangers. 

We haven't pursued a formal diagnosis much because I'm not sure what, if anything, would be different. No matter what, the best thing we could do is recognize the difference between the autistic behaviors and intentional misbehavior, so that we can react accordingly. They both require guidance and teaching, but the way we go about it is slightly different - the boundaries and how we hold them is different. This is a natural extension of our parenting style, so I don't feel as if we need any formal interventions (yet). 

But also, my kids aren't in school and won't be for the foreseeable future, so I don't have to worry about convincing other people to treat him the way that we've learned is best. For that, a diagnosis may go a long way. 

Link to post
Share on other sites

You hit on something major here for me. I'm actually worried that people will treat him as less if he has autism, not be more accommodating. That's how little faith I have in our society. In talking with another mom whose son is on the spectrum, we talked about how ABA seems to be more about compliance and control, not providing coping skills. I think you and I are on somewhat similar pages in terms of parenting, so I'm with you on how I treat my kids versus a neurotypical child. The truth is that I think the majority of our population cares more about compliance than coping because it makes their lives easier and its less effort for them. I'm just a shitty parent to them, but the truth is that its a ton of work to meet my kids where they are. Our own families aren't even on the same page on this. They tell us that our kids will need to learn how to deal and quit coddling them.

I sent in AncestryDNA kits for my kids yesterday, and planning on using Genetic Genie to look at their variant results in more detail. One area of concern I have is that my husband and I both have a heterozygous mutation for MTHFR C677T, which in meta-analysis is showing a strong link for ASD. Honestly, if he's homozygous, I might be more convinced. (On a side note, I discovered that I'm a carrier for Neurofibromatosis, which is that horrible shitty disease my mom had and the reason I'm adopted. Thankfully, my husband is not a carrier so my kids are safe. But I really freaking hope my kids did not get that particular recessive gene.)

Link to post
Share on other sites
1 hour ago, Destiny Skywalker said:

You hit on something major here for me. I'm actually worried that people will treat him as less if he has autism, not be more accommodating. 

 

I completely understand that fear. It's very common and not unwarranted. You are definitely not a shitty parent. It's a LOT more work to meet kids where they are and treat them with the respect that they deserve. There are days I sincerely wish I could just set everything I've learned aside and use more conventional parenting methods to get compliance out of my kids. (There are also many days where I want to break down and send them both to school as well.) Parenting is hard. Parenting special needs kiddos adds new levels to that hard-ness. 

To echo some of the most frequent comments I see from pretty awesome moms in my parenting and homeschooling groups, let me say that a diagnosis is not a forehead tattoo. Just because you have a diagnosis does not mean you have to share it with anyone. He's going to be the same kid exhibiting the same challenges and behaviors with or without one. People are going to treat him how they treat him regardless of what labels he's been assigned in a medical file. 

B U T, a diagnosis will open doors for additional therapies (not just ABA, I do keep hearing about more out there as ABA is becoming more highly criticized by the autistic community) and give you legal recourse to demand changes to his education and educational environment. In a perfect world, nobody would need that, but that ain't the world we have now. Special needs parents have to be fighters to get their children accepted into this society that marginalizes them, and a proper diagnosis can be a powerful weapon in that fight. 

Sidebar - Have you read any of Brené Brown's books? I just finished Dare to Lead, and I'm now obsessed with her work. I'm listening to the podcast and about to start her other books as well. I'm seeing a lot of what you're saying through her lenses regarding bravery, vulnerability, and authenticity. If you haven't read any yet, I'm going to recommend Daring Greatly and Rising Strong. They're next-up on my to-read list, and I'd love to be able to talk about them with other people as I read through them. 

Link to post
Share on other sites

I found Rising Strong at my library as an e-book. Have Dare to Lead and Daring Greatly on hold. I'm interested in what it says. Here's my thing, I think I do authenticity well and it makes people uncomfortable as shit.

I'm going to admit that I am concerned that an ASD DX would also put him back in the program he got kicked out of. I'm still angry with those teachers, with that principal. If I had my way, I would never set foot in that school again. I think they absolutely failed him. They told me he wasn't qualified because he makes eye contact and communicates his needs. Like those were his only needs they thought they should help him meet. They showed their hand. They wanted ABA-style compliance. No thanks. He is actually doing great in the PBIS program because they are so much more compassionate, and that's what he needs.

Link to post
Share on other sites
18 hours ago, Cerina said:

 

I completely understand that fear. It's very common and not unwarranted. You are definitely not a shitty parent. It's a LOT more work to meet kids where they are and treat them with the respect that they deserve. There are days I sincerely wish I could just set everything I've learned aside and use more conventional parenting methods to get compliance out of my kids. (There are also many days where I want to break down and send them both to school as well.) Parenting is hard. Parenting special needs kiddos adds new levels to that hard-ness. 

To echo some of the most frequent comments I see from pretty awesome moms in my parenting and homeschooling groups, let me say that a diagnosis is not a forehead tattoo. Just because you have a diagnosis does not mean you have to share it with anyone. He's going to be the same kid exhibiting the same challenges and behaviors with or without one. People are going to treat him how they treat him regardless of what labels he's been assigned in a medical file. 

B U T, a diagnosis will open doors for additional therapies (not just ABA, I do keep hearing about more out there as ABA is becoming more highly criticized by the autistic community) and give you legal recourse to demand changes to his education and educational environment. In a perfect world, nobody would need that, but that ain't the world we have now. Special needs parents have to be fighters to get their children accepted into this society that marginalizes them, and a proper diagnosis can be a powerful weapon in that fight. 

Sidebar - Have you read any of Brené Brown's books? I just finished Dare to Lead, and I'm now obsessed with her work. I'm listening to the podcast and about to start her other books as well. I'm seeing a lot of what you're saying through her lenses regarding bravery, vulnerability, and authenticity. If you haven't read any yet, I'm going to recommend Daring Greatly and Rising Strong. They're next-up on my to-read list, and I'd love to be able to talk about them with other people as I read through them. 

All of this--except I hate Brene Brown.  Nothing personal...I even have Dare to Lead on my go to bookshelf in my office.  I have known just too many people that worship Brene Brown and are horrible supervisors...including an old boss of mine.  So I unfortunately shudder at her name.

But anywho with ABA...just like everything...it works for a lot of people but not all.  It is very intensive so not getting a payoff for putting in a ton is super frustrating, hence the backlash.  I am not current with the latest research, but it has a higher effectiveness rate for most people than any other therapy.  But from what I understand, the people that do not react well to it have additional diagnosis such as apraxia.

I know it is a small thing and I generally dislike correcting people (in person...online I am totally "well actually...") but I will correct people that do not use student first language because it does change how people perceive students.   This is my personal mission...but please correct people...

Person-First Language

Proof I have it

 

image.png.878c9ab505c10a6b2a68cefa4b0ea305.png

 

Link to post
Share on other sites

I go back and forth on the "autistic people" vs "people with autism" thing because I personally know several people who prefer to be referred to as autistic. They see it more as an identity than a diagnosis, kinda like many deaf people. Generally if I'm talking to strangers or in "public", I stick with person-first language, but to my friends who I know prefer otherwise or somewhere like Nightly, I'll switch back and forth.

I totally imagine that Brene has a whole host of followers who completely miss the mark on her research and what it means and how it should be applied. I love it because it fits right in with my worldview of how we should all act and treat each other. Authenticity is already something I actively strive for in parenting, and it's fascinating to me how much overlap there is with respectful parenting and leading with authenticity. 

Link to post
Share on other sites

I'm working on that first-person language list. It took awhile and I have some progress to make (my mom was "handicapped" in the 80s and I would not call our family super progressive). Our first school psychologist still used the term handicapped. Our neighbor was the school counselor, she outright told that lady to her face it was time to retire.

Link to post
Share on other sites
1 hour ago, Cerina said:

I go back and forth on the "autistic people" vs "people with autism" thing because I personally know several people who prefer to be referred to as autistic. They see it more as an identity than a diagnosis, kinda like many deaf people. Generally if I'm talking to strangers or in "public", I stick with person-first language, but to my friends who I know prefer otherwise or somewhere like Nightly, I'll switch back and forth.

I totally imagine that Brene has a whole host of followers who completely miss the mark on her research and what it means and how it should be applied. I love it because it fits right in with my worldview of how we should all act and treat each other. Authenticity is already something I actively strive for in parenting, and it's fascinating to me how much overlap there is with respectful parenting and leading with authenticity. 

Truth about the identity.  I agree many people see a disability as part of their identity.  Good point regarding many in the deaf community.  I had a parent who was deaf that was emotionally struggling to get cochlear implants for her child whom was also deaf...she felt she was betraying her community.

3 minutes ago, Destiny Skywalker said:

I'm working on that first-person language list. It took awhile and I have some progress to make (my mom was "handicapped" in the 80s and I would not call our family super progressive). Our first school psychologist still used the term handicapped. Our neighbor was the school counselor, she outright told that lady to her face it was time to retire.

So am I.  We are both 80's kids and those habits run deep.  I really struggle with the word retarded.  I catch myself all the time saying an idea or whatever is retarded...like the parent that thinks vaccinations are fuming out of people so he is not letting his kid be at school the week we are doing vaccinations...I said "that is the most retarded shit I have heard since the parent that thought 5G was spreading COVID".

re: brene brown...From the people I have worked with, it isn't necessarily that they miss the mark.  Rather, it is a lack of self-awareness that they are not being kind.  In my experience, her biggest vocal fans seem to be quite mean.  I believe in her work, but I cringe when I hear her name.  I know this is TOTALLY unfair as there are obviously millions of people that lover her work that clearly aren't like this. 

Link to post
Share on other sites

I used to struggle hard with the word "retard" because I used it all the time with its original meaning - to prevent development or progress. In that sense, your example is still pretty spot on. People who believe falsehoods about and refuse to receive the vaccine are retarding our fight against covid. But I finally had to just drop it because the negative connotations overtook actual vocabulary. 

Link to post
Share on other sites
5 hours ago, Hobbes said:

I said "that is the most retarded shit I have heard since the parent that thought 5G was spreading COVID".

This cracked me up. I am not a good person.

Heard on the mean people. Sometimes people confuse authentic with brutal honesty. And I know I get feisty when it comes to advocacy. But there is usually a kind way to tell the truth, or some things just don't need to be said.

Link to post
Share on other sites

I took one of those workplace personality tests a few years back for some leadership training, and I got some result that I was a direct communicator (DC in DiSC assessment). So then they sorted us by what type annoyed us the most. I picked my own type. The facilitator said I wasn't the only one he'd met who said that, but asked me to share why, and I said a lot of Direct communicators were jerks, and that there is usually a nice way to communicate the truth. The guy laughed, and all the Ds glared at me. Meh. Based on their answers, I think I was right, because they said they disliked the people who were big on inclusion and people who would think of multiple solutions instead of answering the question asked. But I was either a hypocrite or proved my point. Maybe both.

Link to post
Share on other sites

Also saw my son's psychiatrist today for a normal check in. I mentioned the autism screener and he said that it would not be possible for a formal diagnosis with just that screener and the neuropsych would not have had enough time to diagnose him with the time he spent with him. An autism evaluation takes several hours. So he may just be ruling it out or he will ask us to come back for more evaluation. But if the final report comes back and diagnoses him, he absolutely recommended a second opinion with a more thorough evaluation. Did I mention how much I love his psychiatrist? He's just the warmest, kindest guy ever and apparently one of the top pediatric psychiatrists in the Seattle and is a Distinguished Fellow American Academy of Child & Adolescent Psychiatry. He's just one of the more responsive and capable doctors I've ever encountered. We are so lucky to have gotten in with him. He told me today that his department has 800 outstanding referrals and they had to close down any more referrals. And he snuck my daughter in. We lucked out for sure.

Link to post
Share on other sites

×
×
  • Create New...