Developmental disorders/learning disabilities/genetic syndromes & more support group

[emyandpotato]

Hi I was wondering if I could join?

My LO is very delayed developmentally in most areas, always has been. His speech is the worst. It's the level of a nine month old, though he understands well. It gets pretty lonely and I feel awful about it a lot of the time, like I've messed up. I hope I'm okay posting here? I'm sorry if I'm not!

Rory is two and a half

 

[sequeena]

Of course you're welcome to post here emy Are you getting any support? Is rory having any therapies?

We had a good appointment for once Thomas' eye sight has improved again he at least didn't inherit his eye problems from me, I gave him that small mercy we're back again on March 25th to see the actual optician. I'm hoping they'll say he doesn't need glasses anymore.

 

[essie0828]

Hi emy and welcome. My DD is severely behind in speach as well, along with being behind in pretty much everything. It's a tough road to walk somedays.

 

[essie0828]

Yay for T's good appointment He's doing so well, WTG momma

 

[emyandpotato]

Sequeena that's fantastic! Fingers crossed for him

Nope, no treatment as of yet! He was about to get SALT and be assessed in his development at 18 months but we moved areas and around here the resources are quite limited and we're still waiting. It worries me a little as I see children younger and far more advanced getting SALT in other areas so it makes me think something awful is wrong and he's being ignored, but that's hopefully just my paranoid mama side coming out!

 

[sequeena]

SALT can take a while to set up, they see school aged children too it's just a case of first come first served really. I'm sure they've not forgotten but give your HV a poke if you're worried that they've forgotten.

You may not get anywhere with SALT for a while. T has been in their books for... err, coming up to a year maybe I can't remember but they've not really done anything. He has to learn patience and attention first which he does NOT have.

 

[JASMAK]

We requested Makena have a speech language assessment. We got the results today. They are always so heartbreaking even though we know her struggles I guess reading about her struggles breaks my heart. She really does struggle. She is very behind in speech and understanding. She needs pictures to help explain her day and for her to understand and remember what is requested. Its hard to hear that she is in the 2% for speech and this is am improvement! Sigh! Anyways, at least she is improving. Her interaction with peers was mostly asking people their names, How old they were, Where they were born. .. that kind of thing. She is starting to ask questions when she realizes she doesn't understand things. That's good too. Overall though very behind. I wish I could make things easier for her.

 

[Peanut78]

Congrats Essie!

Welcome Emy, it's a tough journey without a doubt there will be ups and downs Keep pushing for the SALT, as Sequeena says it's a pretty slow moving process.

Sequeena, great news on the eye appointment and SLEEP I was thinking about what you mentioned about the dribbling - could it be teething? Also, as you probably know low tone also impacts the mouth muscles (which ultimately leads to drooling and makes speech harder). We were advised to encourage T to exercise his mouth muscles as much as possible for example through drinking through an assortment of straws with increasing resistance (we bought some online from Talk Tools), or eating things that really required him to use his muscles both in chewing or moving things around in his mouth (like sticky peanut butter). Did you also say that Thomas still puts a lot in his mouth (I think it was you)... You can try chewy tubes (your SALT can show how to use them) they can helo with the sensory stimulation he may be seeking by still putting things in his mouth while also exercising his mouth muscles. The drooling does get better

We've actually been doing better. I got an e-mail from T's teacher last week saying he was doing much, much better in many areas I've also managed to find someone with an OT background support him for certain sessions at school. At least I feel like now his teacher has actually seen that he CAN and is able even if he doesn't see it next week she can't come back to me with this lack of ability malarkey. He's been doing really well in his therapy sessions too. Although we are a long way off on the speech he is really trying to put the sounds together

 

[aliss]

Our move to Alberta has been approved thank god and we're on the market next week. I can't wait to leave this shithole. I couldn't even understand the cow at the medical centre this morning for a bloodtest. So tired of raising a disabled child in a place I can't even communicate with medical staff. Every day feels like hell here. That being said, my boy is doing well on his own (no services, of course, typical) and now using 3 word sentences (let's go car)!!

 

[Tiff]

I'm so crap at keeping up with this thread. I find I get overwhelmed and get so sad for everyone who's struggling and at times I need a break from it. I'm sorry

Squeena - Glad that T's appointment went well!

Jasmak - I get it, totally. It kicks you right in the "feels" even when you know they struggle. I'm not sure why reading it on paper hurts more. I find I'm the same when I see so many of my friend's kiddos doing so well where Claire is stagnant at where she is right now. Its so tough, sending you lots of love.

Peanut - Wonderful update! Glad that people are seeing that he can.

Emyandpotato - :wave: hi!

We've been okay here. Claire's not sleeping which is typical of ASD kids but its really affecting her. Finally threw in the towel not long ago and spoke to our doctor about Melatonin. Its really been helping her sleep, which is helping her mood. We're seeing quite a reduction in meltdowns which is awesome. However, when she does meltdown now its far more EPIC than the other ones.

She's speaking better and I do feel kindergarten is helping her in that. We're finally picked up for ABA therapy so I'm charting how quickly she cries etc so hopefully we can get on trying to help her regulate her emotions.

 

[RachA]

Congrats Essie

Really pleased to hear T is sleeping much better Sequeena. When they are sleeping properly it makes everything so much easier.

Welcome Emy. Really push the SALT. It's worth contacting the HV to see what's happening. If nothing else you should be able to find out where in the list you are.


Esther's having a tough week this week. I'm helping out at a club run by our church which means I am out of the house from around 8.30am until 2pm (it was 10am til 8pm in Monday). She's used to me being around as I don't work so she's finding it really tough. It seems to be affecting her sleep which is making her grumpy and more likely to kick off. I'm feeling kind of bad as she's usually the one out if my two who goes with the flow more I'm guessing that it's because she's developmentally got to the 2 1/2 age point and is aware when I'm around (or not!) more than she used to. Wer're going away in about 3 weeks and Eather wasn't the one I was worried about but now I am

 

[essie0828]

Thanks ladies. We had pregnancy confirmed yesterday but no scan yet probably getting referred on to a high risk ob which is fine by me. I like the extra monitoring after our history. Still doesn't feel real though

Aliss glad ur getting out of there hun. I hope Alberta opens all sorts of doors for you and your family

Rach I still haven't been able to leave DD for long either. I was wanting to get back to work but just leaving her with DH for a few hours is throwing her off. I am her translator and she has started to rely on me for her communication.

Hi Tiff Glad to see ya around and good to hear your DD had some relief from the melatonin. Mabey her meltdowns are more epic because she's holding in the little ones? Sounds like tiny steps in the right direction to me. mama.

DD met her new PT today and did really well. She spent a fair amount of time stroking the woman's hair and smiling at her so I think they hit it off. She got a little grumpy in the end but that's normal if she's tired of working. And she said, out loud, no signs "more bubbles". This kid is a freak for bubbles

 

[Tiff]

Claire loves bubbles too! My work has these virtually indestructible bubbles and she LOVES when I blow them for her.

 

[essie0828]

I NEED me some indestructible bubbles. We have the scented ones and some days I think I'm testing fate, DD seems to want a drink of them sooo badly

 

[emyandpotato]

Essie you can get touchable bubble mix and a bubble machine quite cheaply- might be an idea!

Jasmak sorry to hear that about Makena. How is she doing with it all? Is she in mainstream school?

Rory has his 2 year assessment next week after so hopefully we might begin to get some answers! By the way, does anyone have any experience of LOs beginning nursery when quite far behind? Rory's due to start in September but I'm worried that he doesn't meet any of the requirements.

 

[essie0828]

Touchable bubble mix, is that a UK thing or is it sold in American stores? Thanks for the info emy I'm gonna google it to see if we can order it online. I found colored bubbles at Meijer that are really neat. When they pop they leave a little red circle that fades away like magic ink. Totally cool.

Got DDs braces refitted today and I hope that she feels more stable in them. She has been rocking her feet and loosing her balance and her PTs recommended a strap to hold her toes down a bit. She has super strong, hypermobile, monkey feet that are an orthotist worst nightmare

 

[essie0828]

Claire loves bubbles too! My work has these virtually indestructible bubbles and she LOVES when I blow them for her.

Lucky girl! Any job that involves bubbles has to rock, I'm jealous

 

[emyandpotato]

I'm not sure but I got Rory some for about £3 this Christmas, it's surely an international thing as it's so simple?!

 

[bumpin2012]

UMMM.... ESSIE!!!! Congratulations! Thats amazing news. I hope you get in to see the specialist you want. (thats some grape juice for both of us!) Cheers to an easy, uneventful pregnancy!


Sequeena: Soooo glad to hear you guys are getting some sleep! Hopefully this continues for you guys. Its certainly about time!

Aliss: Im sooooooo happy to hear that you guys are getting your transfer to Alberta. I can only imagine how frustrating it is to be in a system where you cant even understand what they are telling you and vice versa


I leave on vacation and this thread moves FAST!

 

[sequeena]

Hi ladies I'm just quickly popping in with hugs. Thomas fell asleep too early and is now awake - nightmare! Unless he goes to sleep after 9:30pm he will have a wake up. It's better than it was I suppose.

He has been really grumpy today. I think I've had a constant headache because of his whining. It's just one of those days where you wish everyone would shut up and give you some peace.

I think I'll get us out tomorrow I can't cope anymore. Screw this shitty weather.