Winter Wednesday

[wineallthetime]

Woohoo, joelies! Great news.

cagoldi, that's great Pete and you are coming up with some plan. You've got a lot going on!

nam2013, oh no! I hope your house gets healthy soon.

[wineallthetime]

C loves the cheap little card valentine's with candy! He had so much fun picking them out last year and loves to look at all the ones he gets, so we'll just go that route again!

[wineallthetime]

Hello from the cold. I'm dreading leaving work since I won't be able to warm up my car first. School was cancelled for C today and tomorrow so my poor MIL has all 3 kids.

[lahdeedah]

Question. MH received two referrals for real estate agents. He reached out to one early this month and she told us she would send us listings every two weeks to look at and once it gets a little closer we would get the ball rolling.

He reached out to the other one last week and she sent us a very energetic email and gave us two mortgage loan officers to reach out to get pre-approved.

My question- was that ok? I didn’t know that he was going to contact the second one, but can you talk to two realtors at the same time? We never really heard anything from the first and the second lady seems more in tune with our process, so I kind of want to stick with her. I know nothing but what I hear here about buying a house.

[csho]

Jan 30, 2019 10:39:02 GMT -6 cagoldi said:

Jan 30, 2019 10:26:12 GMT -6 csho said:

That sounds really similar to V actually. He is sub-threshold for Autism, we have been assessed multiple times but he does not meet the criteria for diagnosis. Because diagnostic criteria changed in the DSM, there really isn't a diagnosis for children like V. He's sitting at "non-categorical delay" or "delay not otherwise specified".

We also were hitting a wall at 2.5 years with speech. We switched gears and focused on intensive feeding therapy and oral motor exercises. A lot of people, even doctors and therapists, don't realize that low muscle tone can be a problem in the mouth. We actually had to build muscle in his mouth before he could speak. So that was something that helped both speech and feeding at the same time, very beneficial.

We also do social coaching and hand strengthening with OT. We have graduated from PT and feed therapy now. V is a lot more like his typically developing peers now that he's 5 because of all of the therapy hours and carry-over at home we're done since be was 18 mos.

cagoldi I added stuff

Thanks so much.

That must be so frustrating not having anything concrete to go on. We’re definitely dealing with hypotonia, too, and that is certainly part of the problem with eating and speech.

I’m glad to hear that you are seeing so much improvement!

cagoldi

I don't know if you like this kind of stuff, feel free to ignore this:) I have gotten soooo many book/resource recommendations over the years from teachers/therapists/doctors (some good, some bad, some ugly).

For 2-3 years old I think the best ones I read were "Verbal Behavior Approach" by Dr. Mary Lynch Barbera. She is both a BCBA and a parent of an autistic child, I think that made her book realistic and relate-able. Also the "Make Play Rock" series - really awesome strategies for teaching through play at home, the booklets are small, easy to get through.

For when he's older (or maybe now, check it out every kid is different) - Social Thinking products by Michelle Garcia Winner. Really great stuff.

Do you have any Incredible Years parent groups in your area? I did an IY parenting class and it was great - it was geared toward parents of children with autism and/or significant language delays.

Again, every kid is different, you definitely don't have to look into any of these, unsolicited advice is the worst. But just in case you find this helpful, it's here. Filtering through the unhelpful crap out there can be exhausting.

[cagoldi]

Jan 30, 2019 10:55:23 GMT -6 guster said:

Would your company hold your job for you, cagoldi?
@nam, oh no!!!

Oh definitely not. I work for the biggest bloodsucking demons on the planet.

I’ll just keep doing my schoolwork and switch gears to that path once I’m ready to re-enter the workforce.

[cagoldi]

Jan 30, 2019 11:09:55 GMT -6 csho said:

Jan 30, 2019 10:39:02 GMT -6 cagoldi said:

Thanks so much.

That must be so frustrating not having anything concrete to go on. We’re definitely dealing with hypotonia, too, and that is certainly part of the problem with eating and speech.

I’m glad to hear that you are seeing so much improvement!

cagoldi

I don't know if you like this kind of stuff, feel free to ignore this:) I have gotten soooo many book/resource recommendations over the years from teachers/therapists/doctors (some good, some bad, some ugly).

For 2-3 years old I think the best ones I read were "Verbal Behavior Approach" by Dr. Mary Lynch Barbera. She is both a BCBA and a parent of an autistic child, I think that made her book realistic and relate-able. Also the "Make Play Rock" series - really awesome strategies for teaching through play at home, the booklets are small, easy to get through.

For when he's older (or maybe now, check it out every kid is different) - Social Thinking products by Michelle Garcia Winner. Really great stuff.

Do you have any Incredible Years parent groups in your area? I did an IY parenting class and it was great - it was geared toward parents of children with autism and/or significant language delays.

Again, every kid is different, you definitely don't have to look into any of these, unsolicited advice is the worst. But just in case you find this helpful, it's here. Filtering through the unhelpful crap out there can be exhausting.

I do appreciate it, truly. I read all the parenting books I can get my hands on as it is (that fit our gentle parenting philosophy, anyway).

This doesn’t read as unsolicited advice at all, and I’ll take all the help I can get with regards to navigating this stuff, especially from a BTDT mom.

When I said thank you, I meant it wholly and sincerely. ❤️

[lfig]

cagoldi I sent you a PM regarding infusions. Just wanting to pick your brain a little.

[inthekitty]

I cannot fathom the cold some of you are facing. Stay as warm as possible!

joelies yay for the good prognosis!

lfig it's got to be frustrating to not have a definitive dx, but I'm glad you have a plan going forward.

cagoldi it sounds like you guys have a good plan to make things more manageable in the future. I hope it can work out for you to take a break and focus on school/the kids.

csho hi girl! Glad your ute situation is mostly clearly up. That sounded so scary.

mwhip team cheap Valentines here because they all end up in the recycle bin anyway. We'll probably attach some candy or something like that. They make some that have art/activities on them. I saw ones that had scratch art and ones with mazes.


tallb have a great last day on your trip! I can always eat whatever I want at Disney because I walk so much it offsets whatever I eat. 

[inthekitty]

Work has continued to be busy. Last night Cass joined me for my class at TKD. M stayed home with MH. She was so good. She washed off her dinner plate and cleaned the whole play area. I was proud of her. M told me she knows what she wants to do for her birthday--she wants to go on a cruise and since it's her birthday she gets to decide. I informed her it doesn't work like that but nice try.

[csho]

Jan 30, 2019 11:15:44 GMT -6 cagoldi said:

Jan 30, 2019 11:09:55 GMT -6 csho said:

cagoldi

I don't know if you like this kind of stuff, feel free to ignore this:) I have gotten soooo many book/resource recommendations over the years from teachers/therapists/doctors (some good, some bad, some ugly).

For 2-3 years old I think the best ones I read were "Verbal Behavior Approach" by Dr. Mary Lynch Barbera. She is both a BCBA and a parent of an autistic child, I think that made her book realistic and relate-able. Also the "Make Play Rock" series - really awesome strategies for teaching through play at home, the booklets are small, easy to get through.

For when he's older (or maybe now, check it out every kid is different) - Social Thinking products by Michelle Garcia Winner. Really great stuff.

Do you have any Incredible Years parent groups in your area? I did an IY parenting class and it was great - it was geared toward parents of children with autism and/or significant language delays.

Again, every kid is different, you definitely don't have to look into any of these, unsolicited advice is the worst. But just in case you find this helpful, it's here. Filtering through the unhelpful crap out there can be exhausting.

I do appreciate it, truly. I read all the parenting books I can get my hands on as it is (that fit our gentle parenting philosophy, anyway).

This doesn’t read as unsolicited advice at all, and I’ll take all the help I can get with regards to navigating this stuff, especially from a BTDT mom.

When I said thank you, I meant it wholly and sincerely. ❤️

If you haven't done ABA before, I would watch the YouTube series "The A-Word, Autism" it's a vlog about a kid in CA receiving ABA therapy in his home. This is one of the first things I did after we were getting autism assessments, it helped me learn the lingo and mentally/emotionally think about what therapy would be like.

[cagoldi]

lfig replied, LMK if you need anything else.

[lfig]

Jan 30, 2019 11:47:57 GMT -6 cagoldi said:

lfig replied, LMK if you need anything else.

Thank you so much!  Much appreciated!!

[cagoldi]

Jan 30, 2019 11:47:57 GMT -6 cagoldi said:

lfig replied, LMK if you need anything else.

csho I do have another question; what types of things made them decide that there was a social challenge?

With X, we have a ton of sensory seeking behavior and hardly any interaction with his peers. He never plays with anyone and he uses toys/playground equipment atypically.

So like he will lie on a ball on his stomach and roll around on it. If his classmates try to engage him, he’s pretty oblivious to it. And all he wants to do is play with wood chips. He will pick them up and carry them to different surfaces so he can see/hear how they sound on a bench, the planter, the ground, the ball, etc. He does that to the exclusion of playing with anyone, sliding, bikes, etc.

He does imitate Atticus but that is pretty much the extent of what I would call playing with any other kids.

If we go to the park, he sort of just follows his brother around looking lost and unsure what to do.

[Sunny41]

Jan 30, 2019 11:06:35 GMT -6 lahdeedah said:

Question. MH received two referrals for real estate agents. He reached out to one early this month and she told us she would send us listings every two weeks to look at and once it gets a little closer we would get the ball rolling.

He reached out to the other one last week and she sent us a very energetic email and gave us two mortgage loan officers to reach out to get pre-approved.

My question- was that ok? I didn’t know that he was going to contact the second one, but can you talk to two realtors at the same time? We never really heard anything from the first and the second lady seems more in tune with our process, so I kind of want to stick with her. I know nothing but what I hear here about buying a house.

If you haven't signed a contract with one I don't think there is any issue, just the awkward see ya email

[Sunny41]

lfig that sounds like a smart plan. I was wondering how the timeline of all the options would impact the nerve.

[jewels]

Jan 30, 2019 9:08:42 GMT -6 mwhip said:

E brought home a note from preschool that for Vday, she needs to bring in Valentines signed by her, but not to anyone specific, to make it as easy as possible. Cool, can do. But what the hell does this entail? I'm not pintresty, so I don't want anything overly complicated. But I don't want to just do those cheap little cards in the envelopes that don't ever close. What do you all do?

I'm probably late to this, but we get the cards from Target that have something attached to it - not sure if your school allows food, but it's usually a goldfish, fruitsnacks, or something like a little bracelet or pencil attached.  It's all in one box and you can put it together.  It's what we've done the past 2 years and what 90% of the other families do.  

[csho]

Jan 30, 2019 11:54:24 GMT -6 cagoldi said:

Jan 30, 2019 11:47:57 GMT -6 cagoldi said:

lfig replied, LMK if you need anything else.

csho I do have another question; what types of things made them decide that there was a social challenge?

With X, we have a ton of sensory seeking behavior and hardly any interaction with his peers. He never plays with anyone and he uses toys/playground equipment atypically.

So like he will lie on a ball on his stomach and roll around on it. If his classmates try to engage him, he’s pretty oblivious to it. And all he wants to do is play with wood chips. He will pick them up and carry them to different surfaces so he can see/hear how they sound on a bench, the planter, the ground, the ball, etc. He does that to the exclusion of playing with anyone, sliding, bikes, etc.

So, you and I have the same child by this description. You are describing V at X's age. Picking up, scattering, holding wood chips and ignoring peers is what V would do as well. Everyday. V also has strong sensory needs, he is sensitive to touch for example, which explains why he would avoid peers because they are unpredictable. He couldn't trust that they wouldn't touch him. He is also sensitive to sound, children are loud, unpredictably loud. What X is probably doing is self-soothing in an unpredictable environment, he probably enjoys the tactical/auditory sensation of wood chips, that calms him when he is with other children and gives him pleasure. Wood chips never let you down. I would say he is not oblivious, X is making a choice, give him credit with these behaviors, he's coping and meeting his own needs he is definitely aware of the other children even if it doesn't seem like it.

He is also soothing himself with the ball, he is giving himself proprioceptive input. Kids are smart, he's coping with an environment that's not ideal for him. He may have low body awareness, which is something V has struggled with and he also has strong proprioceptive-seeking behaviors. Deep pressure can be very soothing, helping them to cope and persist with activities and with other children. Just being near a peer can be taxing for a child with sensory needs.

Everyone has sensory preferences, they are just more pronounced in children on the autism spectrum.

For social skills, they focus a lot on eye contact, they observe the number of times your child initiated interaction with you. They will look for smiles. At one of our assessments, the doctor would whistle randomly, pause, and look for a reaction from V. They are also looking for a number of times during the assessment that your child brought you a toy from the room, just to show you.

Social coaching is a technique that a lot of therapists will employ to help you guide your child through interactions. We love social coaching, V is very social now. It involves crouching behind your child and talking through what other people are doing, helping them practice simple social interactions with success, and giving them lots and lots of praise!

You would probably really like DIR floortime methods, they really focus on developing an understanding of your child's sensory needs and "entering their world". They have a parent toolbox online, which is a free video training series that dives deep into sensory processing disorders. We did DIR floortime when V was 2-3. It really helped me develop a strong bond with V. Highly recommend for what you are describing.

Is X more social with adults?

cagoldi Here is the free resource: profectum.org/resources/

[jewels]

LOL at me jumping in re: valentines after everyone else said the same thing. You girls are chatty today though!

lahdeedah I Agree, if you haven't signed anything, just go with the other one that you think gets you more.

[klong11]

lahdeedah if the 1st one never even sent you anything other than the initial email, I wouldn't even worry about it.

[lfig]

cagoldi we bought S a deep pressure compression shirt. The neurologist recommended a SPIO vest, but they can be quite expensive and insurance won’t cover, so then they suggested this. It definitely helps give S that proprioceptive input she desires. When she wears it she attends to task better and is more focused. It’s not a huge difference but it is noticeable. I need to get another because she currently only has 1. You might think about something similar for X.

[cagoldi]

Thanks, lfig. It’s worth a try!

csho I’ll look into that right away. I’m grateful for all your input. He is more social with adults, but still very reserved and standoffish for the most part.

[csho]

Jan 30, 2019 12:41:31 GMT -6 lfig said:

cagoldi we bought S a deep pressure compression shirt. The neurologist recommended a SPIO vest, but they can be quite expensive and insurance won’t cover, so then they suggested this. It definitely helps give S that proprioceptive input she desires. When she wears it she attends to task better and is more focused. It’s not a huge difference but it is noticeable. I need to get another because she currently only has 1. You might think about something similar for X.

cagoldi At X's age, V had a full body SPIO suit. It was really great, but expensive. Many OTs have SPIOs that you can test out/try on before you commit to buying one. We also had our OT do the measuring for us, to ensure we had the right size, it's really important for this pressure garments.

Weighted blankets are also great.

[csho]

Jan 30, 2019 12:46:46 GMT -6 csho said:

Jan 30, 2019 12:41:31 GMT -6 lfig said:

cagoldi we bought S a deep pressure compression shirt. The neurologist recommended a SPIO vest, but they can be quite expensive and insurance won’t cover, so then they suggested this. It definitely helps give S that proprioceptive input she desires. When she wears it she attends to task better and is more focused. It’s not a huge difference but it is noticeable. I need to get another because she currently only has 1. You might think about something similar for X.

cagoldi At X's age, V had a full body SPIO suit. It was really great, but expensive. Many OTs have SPIOs that you can test out/try on before you commit to buying one. We also had our OT do the measuring for us, to ensure we had the right size, it's really important for this pressure garments.

Weighted blankets are also great.

Also - crash pads are good for deep pressure. We thrived on a SPIO + weighted blanket + crash pad combo lifestyle at our house.

For vestibular input (if X has vestibular input seeking needs) highly recommend the Dizzy Disc.

Also - the Z-Vibe for oral motor stimulation cagoldi

[flamingo]

lahdeedah I like a go-getter when it comes to Realtors so I think you're smart to work with the 2nd; sounds like you might not even need to write a 'thanks but no thanks' email to the first. If Realtor 1 ever follows up I would just thank her but say that you've decided to go in another direction.

Cheers for no surgery joelies!

lfig I'm glad you can start on a 'plan B', hopefully surgery won't be necessary but at least you'll be partway down the path if you discover plan A doesn't do what you need it to. Fingers crossed for y'all!

nam2013 Sorry DS is sick, glad your mom arrived in the nick of time! B fell today running around after school with his buds and ended up completely covered in mud. He apologized about 7000 times. Maybe b/c I was with other moms so I didn't want to seem like a lunatic, I was like, "It's ok, accidents happen, let's go home and wash up." But all his apologies made me wonder if I normally knee-jerk react to things like that. I need to work on being more patient, probably.

[lfig]

Jan 30, 2019 13:04:07 GMT -6 csho said:

Jan 30, 2019 12:46:46 GMT -6 csho said:

cagoldi At X's age, V had a full body SPIO suit. It was really great, but expensive. Many OTs have SPIOs that you can test out/try on before you commit to buying one. We also had our OT do the measuring for us, to ensure we had the right size, it's really important for this pressure garments.

Weighted blankets are also great.

Also - crash pads are good for deep pressure. We thrived on a SPIO + weighted blanket + crash pad combo lifestyle at our house.

For vestibular input (if X has vestibular input seeking needs) highly recommend the Dizzy Disc.

Also - the Z-Vibe for oral motor stimulation cagoldi

Ohhh! S loves the crash pad at We Rock the Spectrum!  I don'y know why I never thought to get one for our house!  I will be adding that to my list.

[peachsmama]

Well we're up to 1 degrees and a real feel of -15. I went out to water animals and made the mistake of breathing in through my nose. Instant headache..

[guster]

Jan 30, 2019 12:30:01 GMT -6 jewels said:

LOL at me jumping in re: valentines after everyone else said the same thing. You girls are chatty today though!

I’m super late to the Valentine’s Day discussion because I don’t know if Josie school does anything for it. In years past , her classes were so small (under 10, I think) we were able to do something a little more creative.

[joelies]

Aaaand we're finally getting flurries. At least I sure hope they're only flurries.

[guster]

Jan 30, 2019 14:57:13 GMT -6 joelies said:

Aaaand we're finally getting flurries. At least I sure hope they're only flurries.

It went from super blue outside to what looks like a blizzard. It got very gray and scary all of a sudden.