I actually made some phone calls last week to try to get the ball rolling on anxiety meds, we’re definitely reaching uncharted waters in ds anxiety behaviors and it’s getting scary. So far, I’m reaching voicemail services. Apparently most of the specialists and clinics in our area aren’t in full operation now. I’m waiting on a call back from our primary doctor referral secretary as well. I called our local crisis line for autism families yesterday to see where we could get in for services quickly and they took my intake information and told me to expect a call back in 2 to 3 days for referrals. I’m sure there are a lot of families running into this same issue. Mental health issues are at an all time high at the same time we’ve shut down all of the resources, I hate to know the impact this is having.

Both...but the less regulated also coincides with the shutdown, so it’s hard to tell. He’s super anxious about the virus despite us not turning on news or discussing it frequently around him. I think the change in our weekly routine outings is increasing his anxiety as well. When I have talked to him about the behaviors he’s been having and what’s up, he’s said it’s because everything has changed and he’s terrified of having another soar throat (he had a severe flu in early March). I think the computer might be stimulating enough to quiet the anxiety, but when he’s off the computer behaviors resurface. He believes the screen time is helping.

We’ve been a low to no screen family for the first 9 years of my son’s life. This year we’ve introduced lego boost, the Wii and Minecraft. We were limiting it to one hour after 4pm and that limit was working pretty well. Now ds is getting really into scratch coding and beginning a bit of graphic design. He would literally do this from 6am til bed if I let him. On the one hand, to do this he is reading, problem solving and touching on some math concepts. These are all skill areas that he wouldn’t be working on outside of school with me normally. As he’s working, he gets up frequently to narrate what he’s doing to me, so it’s not like he’s zoned out to the world around him. He has a real sense of pride and accomplishment with this, especially when he shares a finished project. He seems calmer and well regulated when he’s working on the computer as well. When he’s off the computer, he’s thinking about the computer, less regulated, high anxiety. I’m not sure if this is just because it’s not the preferred activity or if the screen time itself is causing issues. I’ve had autistic adults tell me that screen time is actually helpful for them socially and for managing anxiety, yet a quick google predicts absolute doom for any child with autism using screens. I’m feeling really conflicted on how much time to allow for this. How are you guys handling screens, limits, etc? How much time do you allow for academic-ish pursuits on tech as opposed to straight up video games? Totally out of my element here and feeling mom guilt in both directions!

He wouldn’t verbally answer. He may nod his head. For instance at VBS or Sunday school he follows directions, does the crafts or games, but will not reply verbally when spoken to, and often will not respond with body language either. I’ve offered picture cards and tech to help him communicate with others but he’s rejected it. Language doesn’t seem to be the root problem, it’s more like he doesn’t have the desire to communicate.

Yes, he’s playing around with scratch coding and lego boost, though he gets a little frustrated with some it’s limitations. He wants to do python but doesn’t really have the stamina for it yet. We started Minecraft a couple of months ago so coding and mods with that is the latest obsession. I have read a few books on selective mutism, though it’s not a term professionals have used for him. The basic recommendation is to try to gently stretch the situations the person is comfortable speaking with through chaining, which is what we were attempting with church, scouts, lego league before all of the Covid stuff shut everything down.

I think the part that trips people up is that my ds is incredibly talkative and unscripted within our family, super impressive vocabulary. He’ll even talk to me or his brother in front of others in circumstances where he feels comfortable, but when someone else tries to engage him there is an immediate switch to guarded avoidance. So some interpret that as just being shy, or rude, a discipline issue, etc. In theory, we should have wonderful access to services in our area. We’re in a research, university area with several clinics. In reality, the area is swamped, waitlists are long, and every time we’ve finally gotten in with a therapist what they have on offer isn’t an appropriate approach for ds, or they are flummoxed by his unique mix of issues and refer us on to someone else and the waiting process begins again. We’ve seen a developmental pediatrician, multiple neurologists, psychologists, a psychiatrist, the TEACHH clinic, RDI and MNRI therapists, OT, and play therapists...all offering conflicting opinions, costing thousands and offering very little actual help. Without addressing the anxiety component, directly teaching social skills and emotional regulation just isn’t going to work, kwim? We’ve kind of thrown our hands up and muddled along the best we can, but we’re going to need more in the teen/young adult years. I think the next step is meds, which we’ve been avoiding for so long. Moving isn’t an option because we’re within 5 minutes of my parents who are my support system. Ds is comfortable with them so they’re my respite and another set of adults that ds has a relationship with. Yes, to everything you said about employability issues. We’re dealing with lots of rigid thinking, thoughts getting stuck in a loop, and really poor emotional regulation skills. Ds is very interested in coding, so we’re trying to encourage that and get him into something he could do remotely. It’s challenging though because he struggles with reading, writing and math (all of the traditional academic stuff) though he’s a total whiz with visual spatial, logic, engineering, stem type stuff.

Thank you for sharing all of this. Especially the bolded, I’ve never met another mom whose autistic child presents this way. Most have been flummoxed when I describe it. It definitely makes therapy and all of the go to recommendations for ASD kids so difficult and we have major concerns about future employability. I’ll definitely keep a look out for opportunities that will work for him and look into our state and county services again as well.

Lego is one of his main interests so he would share information that he thought was important or useful to the project, sometimes repetitively, but he never engaged in small talk with the other kids, mostly due to anxiety, but also I think there is a component there of just not wanting to be social in that way. I’m not sure that he gets the point of engaging with people he knows casually. It seems like he perceives it as a threat. Just someone trying to exchange a greeting with ds makes him recoil, as in, he physically grits his teeth, looks down and balls his fist. He talks within our family and some extended family, but outside of that is really difficult. Edited to add that I was attempting to reply to PeterPan but my iPad isn’t playing nice with the quote function today.

There are so many awesome games here! This will keep me busy for awhile. PeterPan, the Ryuu game looks really interesting and right up my son’s alley. Is it overwhelming to get started? I actually do have the SGM game package but you have to print out the instructions so I haven’t gotten around to that...I do so much better when everything I need is in the box, lol. Thanks so much for sharing everyone!

I’ve followed your posts over the years about your son, and I do think they’re very similar. We’ve definitely thought about seeing a pdoc and running genetics. I think it’s going to be necessary, though I’ve tried to put it off as long as possible. In our area everything seems to be a 3 to 6 month waitlist and so I’ll call when behaviors are super challenging, and by the time we finally get in, things have calmed down. He seems to cycle quite a bit. I’m seriously terrified of long term consequences of the meds affecting brain development, but if we can’t get functional on the day to day now he won’t be learning the skills he needs to have as adult either. It’s such a hard decision. Going low key is how we’ve been operating with him for years, though we’ve found mainstream activities to work better for him than therapy activities so far. I haven’t really found a therapist that works at his pace/low enough on demands. He’s done Cub Scouts at our church for 2 years, literally never speaking a word to anyone, but completing the badge work, hiking, pitching tents, following the group, listening, smiling. He was doing a lego league club and he actually did talk to other kids about the lego project because that was motivating enough for him, though he didn’t speak in a reciprocal, conversational way. The activity has to be highly motivating to ds for him to participate at all, and it’s still not going to look like a neurotypical child doing the activity. All of the progress we had made with those 2 activities have come to a halt with this pandemic and I’m afraid it will be hard for him to start them back up.

Thank you! This is exactly the kind of info I was looking for, especially what age this is going to be beneficial. Just wanted to make sure I wasn’t waiting until it’s too late. I’m in NC and I did all of the workshops with our local Autism Society when we first got diagnosed at 4 years old so I’m a little fuzzy on what was on offer, I’ll have to double check. I do know they are not compelled to offer services after evaluating homeschoolers or private schoolers. I’ve had multiple friends pull their kids with autism because they couldn’t get the local school to provide appropriate supports and accommodations without lawsuits. I’m in a notoriously bad county for special needs.

No! I’d be interested to hear about anything you’ve found helpful. If we can get some ideas going I thought I’d make a master list organized by skills with links. Might be helpful to have on hand.

Sorry, this is a bit off topic from the conversation, but CuriousMomof3 you’re clearly very knowledgeable on the subject and I found your description of special needs kids and changes over the teenage years very helpful. My son is 10 with ASD2, high anxiety/avoidant profile, which has made working with outside therapists practically impossible. We’ve tried several different therapists (OT, RDI, play therapy) but he outright refuses to work with them and they’ve eventually dismissed him or referred us on to someone else and the pattern repeats. I’ve homeschooled him since kindergarten and we haven’t done an evaluation with the school system, no IEP, etc. He was evaluated by a psychiatrist and confirmed by the TEACHH clinic at Chapel Hill. I’ve always just tried to meet him where he’s at and keep making progress. I’m definitely shooting in the dark sometimes, but I read around these boards and use various resources from AAPC, Social Thinking, Story Grammar Marker and see what works. I give all of that background to ask, would there be any benefit in going through the school and doing an IEP? Especially if ds is so resistant to working with anyone outside of our family? Is it necessary for a paper trail or only if you want to access funds? Will we need it to get access to career transition help? I really like having the freedom to work outside of the system and do what works, but obviously I don’t want ds to miss out if an IEP could actually help. Thanks for any info you can give!

I’m realizing that when I try to remediate various skills with ds (10 years old, ASD2) head on I get a lot of resistance and shut downs, but when I come at it in game format we get a lot further. There are some great game, project and activity threads on the main boards, but I thought we could get a list going here highlighting how particular games address different special needs. Games that address building narrative skills, emotional regulation, interoception, social skills, speech, dyscalculia, dyslexia, working memory, etc. We can share our fun finds here and get a list going. What games are you enjoying now and what skills are they hitting? I’ve ordered these games in attempt to work on narrative skills. I’ll come back and update with how it goes. Once Upon a Time card game https://www.amazon.com/Atlas-Games-ATG1030-Once-Upon/dp/1589781317/ref=sr_1_1?dchild=1&keywords=Once+upon+a+time+game&qid=1587556523&sr=8-1 Dixit https://www.amazon.com/gp/product/2914849656/ref=ox_sc_saved_title_1?smid=ATVPDKIKX0DER&psc=1 Story Sequence Cards (I’m hoping to use these along with the SGM Critical Thinking Triangle activities) https://www.amazon.com/gp/product/B07W82PST9/ref=ox_sc_saved_title_5?smid=A2PNNQC3I376C4&psc=1 The Memory Palace should hit narration skills and memory https://www.amazon.com/gp/product/B01CCIS5JK/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1 We’re using a lot of math games as well. The usual ones like Prime Climb, Proof, Kanoodle, Tangoes, Let’s Play Math I’d love to find games that hit the emotional regulation, flexible thinking skills but in a less head on way. I have a ton of the Social Thinking and AAPC books and resources but they totally shut my ds down.

I think I will go ahead and email if no one here has tried it. We have the stamps, the SGM manipulative, games and bracelets. We normally limit screens so I thought the iPad might be motivating and easy instead of pulling a million things out each day.

I’m looking at the SGM marker app for the iPad and thinking about getting it, but all of the reviews are 6 years old and say the app crashes and won’t save stories. Is anyone using the current app? Any issues? Thanks!

I’m looking at the SGM marker app for the iPad and thinking about getting it, but all of the reviews are 6 years old and say the app crashes and won’t save stories. Is anyone using the current app? Any issues? Thanks!

I’m looking at the SGM marker app for the iPad and thinking about getting it, but all of the reviews are 6 years old and say the app crashes and won’t save stories. Is anyone using the current app? Any issues? Thanks!

I’ve started a new crochet blanket using sock yarn scraps and I’m reading the Home in Mitford series by Jan Karon. We’ve been hanging out in the yard for the past 3 days now that the sun is shining here.

I miss receiving the Eucharist at church each Sunday and I look forward to our Good Friday Tennebraum service all year. I miss browsing at the local used book store. I miss watching my son’s sword fighting class. I miss my monthly knitting group. I miss having something to look forward to: a beach weekend, a date night, family camping, etc.

I’m not hippiemama, and really no one should have to justify their family’s reasons, but I will give you a reason anyway. Autism...OCD...mental health issues that are already greatly aggravated due to the stress of this pandemic. I am doing all that I can to keep things running smoothly in my home and without fear of scarcity for as long as possible. There are people with certain conditions that simply can not “suck it up.” Sure, if we must, we will do an alternative but it absolutely will cause meltdowns, distress, self-harm, etc. If you think I’m exaggerating, be thankful that you aren’t coping with this level of impairment and mental health crisis in your family. Each family has to look at their circumstances and weigh the risks. Mental health matters too.

I don’t have a plan for this year, but our favorite was telling the grandparents we had made some brownies. The kids had cut out brown paper “E’s” and put them in a baking dish covered with tin foil.

It was this one. https://www.scholesisters.com/ss60/ And really, she’s not arguing that literature should be the center of the curriculum, but that we shouldn’t feel bound to the history cycle in choosing our literature, art, music, etc. So it sounds like, what you’re doing isn’t far from what she’s describing.

Interesting, it sure looks like they did. It was on the site last weekend, and it’s still featured in some of their promotional photography.

It’s right here. The general blog link is in birchbark’s signature. http://unembellishedliving.com/?p=1456