Support Chat Thread

[Tiff]

Hello!

I was thinking it'd be nice to have a thread where all of us could chat/vent without constantly having to start a new thread each time. There's lots of days where I could use some but I don't always feel that its "new thread" worthy.

Today is a day that I could really use some . It was an incredibly rough night with Claire and I'm feeling quite down and sad at the moment.

How is everyone else doing? How are your kiddos? Anyone (regardless of situation) is welcome to post!

 

[Peanut78]

Hi Tiff, sorry you had a "down" day. I have those too Thanks for starting this thread, I know I will find it useful Don't have much time to post right now, but will be back in here tonight or tomorrow

 

[sun]

I hope tonight is much better.

Our biggest struggle lately has been with eating. We have another appointment with the dietician and she isn't going to be happy - boo! But on a positive note, B is starting to vary his activities at preschool some! He used to only touch the cars (sort, line them up, etc) but the teacher is starting to get him interested in some other things He has another speech session tomorrow with a therapist who specializes in motor issues (low muscle, etc) so I'm very excited! Other people are starting to understand him more, and he can now blow into his flute and harmonica!

 

[Peanut78]

Yay, go Bun!

Tiff, hope you had a better night

We have the in-laws arriving for 2 weeks tonight. While I love them and am happy to see them, I hate the comments about T. "Oh, so he does understand", "he is so aware of what is going on around him isn't he?" etc (no matter how many times we tell them he doesn't have a cognitive prolem, it's like they don't listen or believe us). Also, the constant talking about how proud they are of his cousin (who they see weekly) and how advanced she is MIL is always trying to "teach" T things, really basic things which he already knows, it upsets me because it reflects that she really thinks he doesn't understand basic concepts

Anyway, rant over - I am sure it will be lovely having them here and the kids love it, I just dread the comments

 

[BlueHadeda]

What a great thread! Thanx Tiff!! Hope you've had some better nights since posting!

I can so relate to your post Peanut! Even though my daughter doesn't have autism. My in-laws comments also drives me up the wall!! They keep on making light of my daughter's case. As if they think if they just BELIEVE it'll dissapear, then it will, iykwim? I think they're trying to be positive or something, but it comes off as "not realising the extend". If I have to hear one more time how she'll "outgrow" it, I'm gonna explode!! How do you "outgrow" nerve damage? Nerves that are DEAD don't just regenerate!!!

Rant over, sorry!

 

[Tiff]

Ugh, had a full reply and then accidently hit the back button. Its been one of those mornings!

Sun - Super glad that B is starting to branch out a bit more! That's awesome! Sorry to hear your dietitian won't be happy at your next appointment. Is it that B won't eat certain foods, etc?

Peanut - I can SO relate. My parents were like that with Claire before I got our diagnosis. It really upset me too that people were questioning her cognitive skills. My mother and I actually got into it once when I got fed up of her saying stuff like that. It was her cognitive skills that I CLUNG to when everyone else's kids were speaking full sentences and she was barely stringing anything together.

She thought that Claire needed "work" on her shapes/colours so got a bunch of activity books. Claire can't sit for that long yet, she gets too upset. She also knows all of them. But my Mom wouldn't listen when I would say that Claire knew what colours were etc, and thought that it was the books that did it.

I was also told to "read" to her more, and the reason why she was struggling was because I clearly do not read to her enough. REGARDLESS of the fact that my kid can "read" (speak from memory actually) most of her books. Guess how she can do that? Because we DO read to her. Uuuugh. I could rant for days.

BlueHadeda - Massive hugs! I totally hear what you are saying, unless stem cell research takes off like wildfire then I fail to see how nerve endings are just going to regnerate. Wish there was a way to explain it to them! Like how paralyzed people don't just magically "grow out" of things.

Still be rough here. So sad and angry.

 

[mummy3]

:wave: Can I join in?

My son is 4 (5 in January, going so fast!) He has autism and is currently in the school districts special ed ASD immersion programme 5 days a week My youngest is 19 1/2m and we have been given a provisional dx of rett syndrome, she has lost her speech from words and small 2/3 word sentances to nothing but a few sounds and is slowly losing alot of her motor abilities. We have someone coming 3x a week from early intervention to help her. Her neurologist though is having her have a repeat MRI scan along with her brother next month as she had an abnormal one at 6m (she was preemie and it showed delayed myelination, so he wants to check on that to rule out a progressive dymyelination problem).

Anyhoo,

Tiff and peanut, I get where you are coming from Just because they do not communicate the same way doesnt mean they dont understand! Its that the others with no knowledge of what the disorder entails dont understand! So hard to hear though all the same

Blue hadeda, I'm sorry they're just not getting/accepting the reality Got to be awful going through that with them all the time

Sun, I hope the dietician was helpful with the eating issues rather than upset? Thats brilliant his speech is getting clearer and he's being encouraged to widen his interests

 

[Peanut78]

:wave: Can I join in?

My son is 4 (5 in January, going so fast!) He has autism and is currently in the school districts special ed ASD immersion programme 5 days a week My youngest is 19 1/2m and we have been given a provisional dx of rett syndrome, she has lost her speech from words and small 2/3 word sentances to nothing but a few sounds and is slowly losing alot of her motor abilities. We have someone coming 3x a week from early intervention to help her. Her neurologist though is having her have a repeat MRI scan along with her brother next month as she had an abnormal one at 6m (she was preemie and it showed delayed myelination, so he wants to check on that to rule out a progressive dymyelination problem).

Anyhoo,

Tiff and peanut, I get where you are coming from Just because they do not communicate the same way doesnt mean they dont understand! Its that the others with no knowledge of what the disorder entails dont understand! So hard to hear though all the same

Blue hadeda, I'm sorry they're just not getting/accepting the reality Got to be awful going through that with them all the time

Sun, I hope the dietician was helpful with the eating issues rather than upset? Thats brilliant his speech is getting clearer and he's being encouraged to widen his interests

Hi Mummy3

Just quickly wanted to add that my son also has delayed myelination, showed up on an MRI when he was ca. 18 months due to motor delays, he was subsequently tested for demyelinating conditions, a massive host of tests, which eventually came back all clear. More later, in a rush now
Thinking of you , it is such a worrying time

Big hugs Tiff, thinking of you too

 

[BlueHadeda]

Mummy3, good luck with the MRI's next month. Keep us posted?

I have another vent. Sorry if this is long-winded, but to explain...my daughter's condition damaged the nerves in her sacral vertebrae, that leads to bowel, bladder and feet. She has a very slight dropfoot. Meaning, her toes drop down when she walks. So when she steps through, her foot doesn't step down on the heel first, toes second. The toes drag along pointing downwards and lands toes first, heel second. When she concentrates or walks slowly, she's usually fine, since it's a very, very slight dropfoot in her case. Unfortunately when she gets tired, or when she's running, this happens allot and it makes her stumble, fall down or scrape the top part of her toes or foot on the cement, tar, ground or grass.

Usually in winter, it doesn't matter too much, since she'll have shoes on, and her knees and shins will be protected by long pants. But it's spring now in our country, and we live in a very hot part of it. The children wear short (uniform) dresses to school, and go barefoot. This week alone she's fallen down at least 3 times already, and scraped the skin off her foot, knees, hand, elbow, etc. Usually when she stumbles she can stop herself from falling down, but about once a day she can't. And if it happens on cement or tar, she gets hurt. It's usually deep scrapes, that bleeds quite a bit, and then she has a scab for a week or longer. Usually this scab gets scraped off a few times before it finally gets a chance to heal.

My heart aches for her, and I don't know how to help her! The doctors can't do anything. The nerves are permanently damaged, and wearing braces (afo's) is not worth it, since her dropfoot isn't bad enough. Wearing afo's would make it difficult to run. I told her she could just as well stop running herself, then she won't fall so much!! But she's such a lively, active little thing, she darts and jumps and flutters from place to place like a little busy bird. My husband said he thinks we should get permission from the school to let her wear shoes in summer as well. But it's sad, because she'll be really hot in our weather in socks and shoes. But I don't see much of a choice.

 

[mummy3]

peanut, thanks hun Will keep you updated, I'm so worried because she had normal skills, albeit she was delayed motorwise for awhile in her early life as she was preemie and had trouble growing but caught up and then some now is regressing. Did your son have any regression? Also was he preemie? Wr're told it can be normal to have delsyed myelination as a preemie.

Bluehadeda I dont know anything about tethered cord hun, but it sounds like the shoes in winter will be a good plan, as long as the rest of her uniform is not going to over heat here then it sounds like the lesser of 2 evils to stop her falling and hurting herself She sounds like such a happy busy little girl

Hope everyones having a better time of it

 

[Tiff]

Massive hugs Blue. Reading that made my heart sink too, its hard when you have to sit back and watch how things that other kids would have no issues with be very tough for your little one.

Its been a rough few weeks with Claire, when she gets overloaded she screams at the top of her lungs... its ear splitting and physically hurts my ears. Since she doesn't understand how to use language properly its so hard to try and figure out what the heck is going on. She does talk, and can do the basics for sure. But once you get into a bit more complicated stuff then she starts to lose the plot.

She was diagnosed with moderate-severe Autism... hoping that when we FINALLY get picked up for some speech therapy and occupational therapy it'll help. When she gets frustrated she'll pick her lip to the point of bleeding and pull her hair out. Hate watching that and not knowing how to get through to her when she's that agitated.

 

[BlueHadeda]

Poor Claire! That must be so frustrating for her. How long will it be before you can start speech and occupational therapy? My daughter had it last year. They said she was about 2 years behind on most of her communication levels. I hope it'll help Claire to be able to express herself. Won't it maybe help if you develop a "sign" system in the meantime where she just show you what's upsetting her in those situations? Like "I'm hurt", "I'm sad", "I'm hungry", etc.? Or is she a bit young for that?

 

[Tiff]

We've tried but she gets frustrated with it. She goes in for another assessment with the SLP and OT on the 8th of November so that's good I suppose. Getting tired of waiting, we've been waiting to get her into speech therapy for almost 2 years now.

 

[mummy3]

Tiff, Claire sounds very similar to my little guy Do they have special ed preschool where you are that does the therapy in there? My son gets speech and OT help at the preschool, they take him out the class for the sessions and then bring him back. He's a year older than Claire and in that time with the extra help he's coming on awesome so hang in there hun

2 years is a crazy long time to wait though!

 

[sun]

Wow Tiff - You've had to wait 2 years! I waited 9 months and thought that was bad enough! He's been in speech therapy for well over a year, but is only going every second week now. We're emphasizing on getting his muscles stronger so he can pronounce more sounds.

To answer your question about B's eating, he is really really picky about food. It stressed me out because so many people will tell me that he is picky because I give him a choice of food rather than laying down the law. I hear "he'll eat when he's hungry" ALL the time. But actually he won't! I have seen him not eat for 2 days without problems - he gets crankier than usual but will not touch something he doesn't want.

Some of his eating issues are:

Will only eat a handful of foods and generally only asks for plain rice cakes
Will not touch meat or veg (other than carrots or occasionally red pepper)
Will not eat mixed foods - each ingredient has to be separate
If there is an ingredient he doesn't like, it can't be on his plate
His iron is low and we are working on upping it, but it is hard. He will eat crap though (granola bars and cookies for example) and my mother and MIL often give him that stuff. This totally makes things worse as when we are there he won't eat anything but granola bars.
Sometimes (very occasionally) I can get him to eat some totally uncharacteristic things though - like samosas (the wrapper, not the interior) and spring rolls. No idea why, but he used to like them quite a bit pre-pickiness (before around 14mo). When he was a baby he would eat anything as long as he could chew it.

I have also had a longstanding problem getting him to drink enough since I started giving him water at around 7-8mo. At the moment he gets quite a bit of his water consumption from crushed ice which he will eat. I have heard that eating ice is also a sign of low iron, so I'm really hoping we can get something to help.

 

[Tiff]

Yeah it really sucks having to wait. Its so confusing because cognitively there is not a thing wrong with her mind at times, she knows and understands everything. But for her to turn around and try and verbalize it is where the disconnect is.

She'll tell us that she "doesn't want" something, but always gets confused with the contexts. She was being saucy the other day and I said "Claire, that's enough". To which she replies "I don't want that's enough!" lol.

Ahh Sun, that's gotta be rough and scary. Its frustrating when people put their 2.5 cents in without really thinking it through. I'm CONSTANTLY having to remind people that "typical" parenting strategies do NOT work with Claire. My Mom is forever telling me to just DO something. But I can't! For a typical kiddo, yes you can absolutely lay down the law. They WILL eat when they're hungry. But B isn't a typical kiddo.

What irritates me the most is when I actually take the time/effort to explain all that and I still get argued with.

 

[Aunty E]

Hi all

Mummy3 - hope you get a good answer soon on your little girl - there are plenty of conditions aside from Rett Syndrome which have regression as a symptom xx

Tiff, sorry you're having to wait so long for speech therapy. I know I complain about our speech therapist (because she is a cow) but I am grateful for how quickly we've been seen.

Blue - I read your daughter's story and am so impressed at your persistence in getting a diagnosis for her.

Sun - Imogen is generally very good with food, but she will not drink anything but squash from her cups. She was completely obsessive about milk in bottles, but we made a decision that the teats were not helping her speech or emotional development (they were a bit of a crutch when she was upset/tantrumming) so bottles are gone forever. she will drink no added sugar squash until the cows come home from a very specific sippy cup though (hard spout no spill, from tommee tippee).

Imogen has her next three sessions with SALT next month, and the educational psychologist on 14th. Her nursery teacher was very nice at her parents evening, but really got up my nose with phrases like 'children like this' and going on and on about her not being potty trained. No. She's not. But plenty of neuro-typical children aren't potty trained either.

 

[mummy3]

Eating issues are a minefield I've read that about craving ice when pregnant, could be the same with kids!

Loving the "I dont want thats enough"

I hope Eilidhs provisional dx is wrong, its not just her language thats gone though its her motor skills as well, she cant even stack 2 blocks now for example and is getting very clumsy but we've been very lucky helpwise, within 2 weeks of her early intervention assessment we had speech therapy and an infant teacher set up to help her at home

Thats unfair comparison potty training wise, my little guy was completely potty trained before 2 and he's autistic, just happened to have a fascination with the toilet They're all individual

 

[Midnight_Fairy]

Hello, can I join?? xx

 

[Tiff]

Of course you can hun!