Support Chat Thread

[BlueHadeda]

Oh Sun, that's so sad. Only a mom of a child that doesn't eat can understand what it does to you when you send your child to school on an empty stomach, and he comes back hours and hours later and still hasn't eaten anything. It breaks one's heart!

My husband is strict, and has started to force (not physically) my son to eat a few bites before going to school. It's awful having to do that, but the days are long and the work he has to do is so difficult and complex at his age, that he needs the strength that comes from food. We would've been less strict if he would always eat his sandwich at breaktime (2 hours after school started). But some days he wouldn't eat breakfast, nothing at breaktime and then come home lunchtime (in our country school comes out before lunch) and refuse lunch as well!!

 

[sun]

How is everyone's LOs doing this week?

 

[BlueHadeda]

It's going well with us, thank you! Except for the most awful tantrums. I completely lost it last night with my daughter, when she disrespected me for the 3rd time in a row. I feel so awful for loosing control like that. It sometimes feel like I'm in this neverending cycle of trying to build my relationship with her, then loosing it, feeling awful, crying myself to sleep, then try again the next day to build my relationship, loosing it, etc. How on earth do you manage a 9-year old's tantrums?!?!

Apart from that, it's going well. It's almost school holidays for us (summer holidays of almost 2 months!! ). And we found a type of pantyliner that doesn't irritate my daughter!! I'm so happy about that, because it saves SO much money on underwear!!! We used to throw away about 5 or 6 panties a week. Now, it's more like 2 or 3. Long ago, I stopped trying to wash it with the hand. I just couldn't stomach it anymore after a few years, so my husband told me to just throw it away and replace. But darn it, it's expensive!!! So the pantyliners (Dry like me) helps loads. Though, they're also expensive, especially since she needs at least 2 a day.

How's it going with you, Sun?

 

[Peanut78]

Hi All,

Blue, that's great you found a panty-liner that works well Where will you spend the summer holidays?

You are certainly not the only one loosing your rag and feeling guilty about it . T is a remarkably stubborn child and I am already not a very patient person, sometimes I just loose it and feel terrible afterwards

We had the in-laws here a few weeks ago and it was really lovely. There was only one stupid comment from FiL: "he really does understand so much doesn't he" - I didn't say anything this time, but honestly yes, why wouldn't he, how many times do we have to go over this?! Otherwise it was great, the kids had such a wonderful time

We had our parent - teacher meeting at T's nursery which went really well. His current teacher has a qualification in special needs which has made such a big difference. She said he's making wonderful progress and really trying, his pencil work has improved, as have his concentration levels, he is very participatory and his sounds and attempts at imitating sounds are coming along better. I know he is very happy there and stands at the door every morning with his little bag waiting to go to nursery

Eccleston, I can completely empathise with that feeling of resentment. I remember sitting in my car crying outside T's nursery this time last year (after a bad meeting with his then teacher) watching all the other mum's picking up their children and resenting the fact that it was just so "easy" for them and they didn't have all that worry day in and day out. Blue puts it well thou

Faun, did you get the nursery sorted out?

Mummy3, how are you? How's your daughters leg? I thought I had answered your questions, but can't see it so maybe I didn't - sorry My son was not a preemie, and no he didn't regress, he has just been slow to acquire or perfect gross and fine motor skills all along. When do you expect to know more from your daughters tests?

Tiff, how's Claire?

Sovereign, how's your little lad?

Have a great weekend all

 

[Midnight_Fairy]

Hi all. We had peadiactric app the other day and she seems pleased with his progress. He is insisting on wearing ONE certain green top every single day, even under his school top and pyjamas, I am managing to get it off him in the promise it will be washed and dried in under 2 hours but now my washing machine has broke :S Oh man, he loves that top!!

People dont understand though, they say oh just take it off him but with ASD it is really not that simple.

 

[sun]

Blue - You are definitely not the only one who loses it sometimes! I am a very patient person when it comes to my son, but I still get so so frustrated sometimes and find myself snapping at him. Or even worse I know that I should just back off but I don't and end up in a battle of wills (where I will always be the loser - like trying to make him eat). Then afterwards I feel so guilty.

So glad you found some pantyliners that work though - and that holidays are coming up!! It's a long wait for ours over here haha. But the christmas break is right around the corner - that should be nice!

Peanut - My son always got the surprised reaction when he showed a hint of intelligence too Now that he is talking I don't get those comments as much though! His low tone means there are sounds he can't say though, and certain people (MIL!) are always either making fun (not in a mean way) or correcting him. I hate it as I don't want to do a thing to discourage his speech - he can talk all day if he likes (music to my ears!). It is fab that your LO is imitating sounds! And I love that he is at the door waiting to go and that the nursery seems so good for him. It is so amazing when you are dropping them off somewhere you know is really making a difference.

MF - I had to laugh at the green top comment! Coincidence - my son has worn his green monster shirt for weeks! Luckily I have an alternate shirt he will wear while I do a wash - but he has to be in a good mood for the switch. I know what you mean about people understanding - I find generally people think I'm too lenient and I need to stop "letting him get away with it" xx

It's 3:30pm here and my son is napping without having eaten a thing apart from a bite of muffin I try not to make it a big deal, but lately he has been specifically asking for things to eat - which I make. Then he won't even take a bite. It doesn't sound like that big of a deal, but it gets me so frustrated! I know his levels are low and he needs to eat, but he is fine with nothing. And we got some bad news that his preschool teacher (whom we LOVE) will be leaving in December. I almost cried when she told me - she has been so fantastic for him and he is finally starting to open up a bit to her. And in a few weeks she'll be gone! sniff.

 

[BlueHadeda]

Oh no Sun, that's so sad about the teacher going away. It took my daughter a full 6 months at age 3-4, before she said her very first word at the school. It would've made life very difficult if the teacher then would've gone away. Will it make a difference to your son's eating if he helps prepare the food/muffins/etc. with you? And maybe make everything smaller? Like mini-muffins?

Peanut, we're only going camping North of Pretoria with my family for a few days, the rest of the time we'll stay at home for the Desember holidays. Family will be visiting us here. We prefer to go away (to the coast) during the March/April holiday. I'm really looking forward to just spend a few weeks not driving anywhere with my baby. She's had a hard few months where I always had to wake her up because it's time to fetch the other kids from school/playschool/afterschool activities/sports/etc.

Midnight, that's great about the pediatric appointment that went well. Good luck with washing the green shirt!! No chance of finding a similar one as a back up?

Peanut, that's also great that your parent-teacher meeting went so well. And that you had a great time with the in-laws (despite there lack of full understanding).

And LOL yes, Sun, I agree, what child wants to constantly hear their mother correct their speech? My MIL also keeps on telling me to correct my daughter's "mistakes". She replaced a lot of letters, like a "t" instead of a "k", etc. But I didn't want to all day go around and correct her as if she can't do anything right, iykwim?

 

[mummy3]

I meant to update, been hectic here!

Eilidhs leg abscess has cleared, but not before another trip to the urgent care Her and her brother are going for their MRI scans tomorrow, thankfully its a 9am start so the fasting shouldn't be too awful but I know she's going to fight to bf

MF, my son is exactly the same, although with him atm its a long angry birds blanket

Peanut, how cute him waiting with his little bag Glad your nursery report is so positive

Blue I hear you on preteen girl tantrums My 8 year old is also getting to be a master at these, stay strong Brilliant that you found a panty liner that works as well Enjoy your holiday

Sun I'm sorry his teacher is leaving and that you're having a tough time with eating Will his school help? We have food issues with my son, more sensory wise though, and the school have us send stuff in and try and work with him. Its scary when they dont eat

Hope everyone is well

 

[Peanut78]

Good luck tomorrow for your kids MRI's Mummy3, sending you love and hugs

MF, not quite the same, but I spent over 20 GBP buying a used taggie/ comforter on e-bay , to make sure I had a spare of the one my youngest insists on sleeping with (if it's ever in wash etc he goes into total meltdown). They don't make the exact same one new anymore. I was shocked to see how many parents are clearly doing the same in desperation one was selling for 35 GBP (it only retails new for 12.99 GBP!)

Sun, sorry to hear Bun's teacher is leaving. I hope he gets and equally good replacement The feeding issues must be very stressful to deal with. Last year we went through a long cycle of illness - ear infection, then chest infection, then ear infection again etc and for a couple of months my son was completely off his food. I found it tremendously stressful , I can't imagine how hard it must be to deal with that on a daily basis You are so innovative in your approaches to addressing it, I love your idea about the food chain/ box - looked sooo scrummy

Blue, quite jealous of the upcoming holidays, wish I was heading out to SA for Christmas

 

[BlueHadeda]

Hahahaha...mummy3, I LOVE that door-smiley! That's about how I feel when my daughter starts with one of her tantrums.

Good luck with the MRI's tomorrow! And especially for the results afterwards. Keep us posted? Your babies will be in our thoughts and prayers. Hope they (especially your daughter) will be okay with the fasting.

 

[Tiff]

:wave: Hi ladies!

Sorry for not updating. Just not in a place right now where I want to talk about the stuff with Claire that much. Do you guys feel like that at times? We got her reassessments done a few weeks ago, she hasn't progressed at all. So at the age of almost 4 she's capable (with a lot of help) to do things a 2 year old should be able to do.

It'll come I suppose but I'm really tired of these stupid assessments.

I hope you all are doing well, I've been thinking of you and your LOs even if I haven't been commenting.

 

[mummy3]

Tiff Will she be offered more help now? Its hard to hear for sure

Blue, it is a perfect smilie for those tantrums for sure How are you holding up?

Peanut, good plan at the replacement comforter but at the price used vs new!

MRIs went well this morning, they weren't too grumpy! We got a call back from the neurologist already this afternoon, little guys was normal Eilidhs showed abnormalities in the left frontal region, he's going to go into more detail at our follow up on the 12th dec.

 

[sun]

Tiff Totally understand that you aren't up to discussing everything at the moment. We'll be here to listen when you are though. xx

mummy3 - So glad everything went smoothly with the MRIs! Did they have to be sedated for them? My son is scheduled to get a sleep-deprivation EEG in December and I'm not looking forward to it - he doesn't do well with medical procedures at all.

Blue - I feel the same way about my daughter. She's just turned 1 and has always been woken and dragged around to my son's appointments, preschool, etc. I'm so lucky she's such a relaxed and happy baby.

Normally I don't like winter, but today we had our first real snowfall (as in the snow stayed on the ground). We woke up to a blanket of snow and it wasn't too cold out (-4C). My guy was so so excited! Getting him into snow pants was a bit of work, but he had a great time outside
Making me excited for the christmas holidays!

 

[GypsyDancer]

Can anyone post in here no matter what medical condition our los have?
I dont really come into this bit normally but injust need to get out aload of feelings im keeping in and i dont know where else to put them without coming across harsh and judgemental (im not)..im not expecting any replies i just need to put it all down as a release iykwim?
My toddler has cystic fibrosis and has recently grown a nasty bug in his lungs called pseudomonas..so his level of treatment has been upped and im just feeling like itsball abit too much right now..i know this feeling will pass but i just have this horrible knot in my stomache right now and just feel like crying..
Ive just been reading a thread in toddler section about nursery and people have been discussing their los constantly catching illnesses and chest infections and saying how its just how it is and they have to catch them at some point..so they would send los in even if ill
I just feel so sad and angry that its no big deal to them..but its serious for us and its taken over my life..im too scared to put my lo in a nursery for that reason..he has no friends because i always worry that kids will have coughs and the parents wont understand and im so fed up of hearing people on my fb putting statuses about their poor children having colds and how sad they are for them.
.id love for my toddler to be able to have a cold without having to increase his constant antibiotics and worrying if itll go to his chest worrying that one day he'll catch that one bug thats just too much for his little body and send him into hospital..
I guess im just terrified of him being anything other than safe and healthy in my arms..i love him so much and i just wish some people would be greatful that their los only have a cold..
Agh im feeling slightly better now! Thankyou..
Also id like to add..i know its not nice when our los have colds/illnesses..i have a baby without cf and i still wouldnt want him to have a cold ect but being honest..i wouldnt be worried about him like i would my toddler if thay makes sense? X

 

[sun]

GypsyDancer - Ofcourse anyone can post! I know which post you're referring to in toddlers and I totally agree with you. My son is in a preschool with 6 other kids and we all know each other and are good about not coming in when sick. But I know lots of other places (especially public daycares) where people just load their children up with meds and send them in even though they know they shouldn't. I know that often the parents run out of sick days etc, but it's still wrong. My son has asthma so gets problems with bronchitis and chest colds and having to go to hospital - with him the coughs last weeks and weeks so I also get annoyed when people just say it's good for their immunity. Sure, if a cold lasts for a short time and they're fine. I am sure if I had a LO with CF I would be the same as you and not want them to go to nursery - his asthma is scary enough.
Lots of hugs -

 

[Peanut78]

Hi GD, sending you big hugs Although my son's issues are different (he has a neurological condition which affects his motor planning) I know how it feels to walk around with a knot in your stomach.

I was randomly chatting with our nursery manager a while back and she also said how common it was for parents to dose their kids up with calpol and send them to nursery. How totally irresponsible I don't know much about CF, but would something like Sun mentions in terms of small group of children (whose parents you know and are familiar with your son's condition) to meet with once a week or so - both for you and your son?

 

[Tiff]

GD, of course you can share in here! Its a safe place to be able to vent without hurting anyone's feelings.

I would probably feel the same if in your shoes as well.


So in talking with my RT about Claire's stuff, I found out the other day that those yearly assessments IS in fact them "picking up" Claire. So upsetting, that means that we don't get any sort of therapy for her until our funding applications have gone through.

I keep getting told by her RT when we pick her up from preschool that she NEEDS self regulation therapy asap as she can't handle change and gets so wired that she can't function. They also think she might have ADHD but I'm going to fight that, I don't see it.

Sad and feeling like unless we have thousands of dollars we're not going to be able to get therapy for her.

 

[Peanut78]

Tiff, I'm so sorry to hear that I can only imagine how frustrated you must be feeling How long do the funding applications usually take?

We are extremely lucky in that our private health insurance through OH's employer covers everything (ST+OT) because we have a diagnosis from neurologist. Without that we would never be able to afford it in the long run either. My OH considered applying for another job in a different organization a while back and we concluded he simply couldn't as we would loose coverage for therapy

An ST we saw once also suggested T may have ADHD a while back, when I discussed it with his regular therapy team they said it was ridiculous and he was just being a normal 3 year old who isn't always able to sit still for an hour to complete an activity he clearly wasn't interested in. They also said sometimes people over-analyse children who have a known issue and disregard what is also "normal" child appropriate behaviour. If you don't see signs of ADHD in Claire, I seriously doubt it's there (unlike other people who don't deal with special needs, I think we have some idea to also identify "warning signs" and symptoms).

I don't know anything about self-regulation therapy (so hope this doesn't come across too ignorant and annoying!), but would it be possible to pay privately to see a therapist once or twice to get some ideas on techniques or work you could be doing with Claire at home in the interim until your applications are sorted and you are able to access more regular therapy?

I so hope you get the funding you need asap, it's awful to feel so powerless - sending you massive

 

[Tiff]

Not sure how long, or if we will even be approved for them. Its all a waiting game right now I suppose.

We can go privately but the cost is astronomical here. It'll be about $700 just for an initial assessment, then looking about $150-$300 a session that isn't covered by any benefits. She needs to be going at least once a week (more would be helpful) in order to get herself back on track.

I guess Self Regulation Therapy is a bad term to use, more that she can't regulate herself at all when she gets upset/worked up. She's back to picking her lip until bleeding almost non stop these days as well as pulling out her hair. Heartbreaking.

Sorry to just dump this all in here.

 

[sun]

Not sure where you are in Ontario, but where I am there are also long wait times to get into the system after diagnosis. My friends son was diagnosed with moderate/severe autism 6 months ago at age 3 and they are still waiting. In the meantime they are paying out of pocket for speech therapy (he is non-verbal). In some ways we were fortunate that Bun was able to get into the system so young (14mo) because of his other developmental delays - so we were able to get speech right away. Otherwise we could never have afforded therapies on our own. I wish I had any suggestions to offer. I do agree with Peanut about working at home. I actually found that once I had an idea of how to help, the work I did at home had a huge effect. Would it be worth it to get a only a few sessions a month, then work at home in the meantime based on the therapy that they are doing in the session?

Lots of hugs