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

[emyandpotato]

Massive congratulations Essie!

 

[RachA]

Bumpin - that isn't too bad at all really. There's more of a chance that he'll catch up sooner as he's not too far behind
Hearing the numbers is really hard-even if they don't come out as bad as you think they might be it always leaves you feeling a bit odd. You've got something to work with now which always helps.


I've had to go through and sign the request for Esther to have a statement for her for school. It was pretty bleak reading really. Even though I know it all it just seems worse seeing it written down.

 

[bumpin2012]

Thanks RachA I think the number bothered me, because I want expecting it. But when I think about where he was 8 months ago, he was understanding nothing. Not even his name, so to me, 13 months sounds reasonable. The important thing is he IS progressing.

Still waiting too hear from the SLP office. I called today, they told me he hasn't even been assigned to anyone yet. The last group session (in JANUARY) they told me 4-6 weeks. It's been 10. Hopefully they will get to him soon. I'm anxious to get things moving for him

 

[RachA]

That is the really important that-the fact he is progressing
We have Esther's next 6 monthly review next week and although I know she has progressed I'm still nervous that she hasn't progressed enough.

 

[bumpin2012]

slow progression is better than no progression or even regression right? Hopefully it will be good news!

 

[RachA]

Thanks
Slow progression would potentially mean that over time she will get further and further behind. So while it's better than no progression, it still wouldn't be great. Up until now she's progressed at the correct rate so is consistently 18months behind her actual age.

 

[bananabump]

Congratulations Essie! Xx

 

[essie0828]

Thanks bananna bump! Just a couple months behind you

Rach I hope Esthers report goes well.

 

[emyandpotato]

Sorry to be totally OT but I was just wondering, for those who's LOs have problems with gross motor skills, particularly walking and jumping etc, are there any shoes you could recommend as a sort of trainer type shoe? He has wellies but when we go out on walks he often trips in them but his other shoes are a smarter brogue style and probably not right for walking either. He's also in to climbing at the moment so a good grip would be ideal.

 

[sequeena]

That's the problem with slow progression T is a slow progressor too and it's meant his delays have jumped from 12 months to 15 months behind. FX he's got a little better.

emy Thomas is delayed with gross motor skills and he only wears clarks shoes. Currently he's wearing Clarks trainers. They have grip but not a massive amount I think. Wish I was more help but no-one has mentioned shoes to me before (except physio but that's different).

Butlins was wonderful. This picture sums up how much fun Thomas had.

Thomas' rash still hasn't shifted. I took him to the doctor yesterday who said it's perioral dematitis. He gave us an antibiotic but Thomas only had one dose as he had a reaction. Not a bad one as such but for around 15-20 minutes afterwards his saliva was working overtime. We were changing bibs every minute, eventually he was soaked and our floor was covered in puddles of saliva. It stopped very suddenly but it was a little worrying. He's been prescribed another antibiotic now. It's one he's had before so hopefully he won't react.

I hope everyone is ok we have a busy few weeks ahead. Soft play tomorrow, portage, Folly farm next week (my cousin's birthday), a family meal (mine and my cousin's birthday) and we're hoping to get away for 1 night sometime after my birthday (it's easter sunday), sometime around the 25th I think oh and he has a birthday party to go to on the 19th. He also has an audiology appointment on the 23rd.

 

[moggymay]

My eldest has weak ankle ligaments, perk of being prem for him but his hips were ok, he was a later walker but we were advised to stick with the shoes that were a cross between boots and shoes, effectively shoes with the higher sides like these https://www.charlesclinkard.co.uk/boys-c15/shoes-c16/geox-crush-boys-school-shoes-p1617?attribute[1]=1283 obviously these aren't ones you would go for as they are school shoes but they show the higher bit around the ankle compared to a standard shoe but less than an actual boot if that makes sense?

We are due to see the SLT again in a fortnight or so and are hoping to be able to confirm the plan for when J starts reception in September. Places are confirmed next week so getting nervous! Good news is that all his development is now within the correct range although that range is 30-50 months his physical skills reach the 40-60 month range easily and his "self help" skills are going from strength to strength.

I feel a little uneasy as to whether this is it and he is now catching up himself and the support should be withdrawn or not? I dreamt of the point where he was within the correct range for speech, now he is in it albeit potentially still 10 months or so behind worst case scenario I am worrying what happens now. I don't know what to expect when we meet her, can you guys help me with any questions you think are important to ask and have answered? At the moment we are just wanting to make sure the level of support he gets from his keyworker at pre-school can be maintained in school, he doesn't need statementing but he does need support which school have indicated they will be able to offer assuming he gets a place....

His speech is unrecognisable these days to the little boy who barely uttered a word, we had the speech explosion as more of a trickle that started a few weeks after his 3rd birthday, now he is learning new words and phrases all the time and he loves to sing, I was reminded how delayed the speech was though today when we were looking after a friends little girl, she was 2 last month and was copycatting me and trying to say what I said, Pickle never did that He is now making up for it though and am so proud of his progress, the SLT's have given us some fab tools to help him and his key worker has been AMAZING!!!

Looks like Butlins was fun Sarah Thomas looks likes he had great fun!

Do you hear about school next week too Rach?

 

[sequeena]

Hey Moggy that's great news! I would be honest, tell them your worries about support being withdrawn now he's catching up happydance. I'm sure they won't all pull out at once it will be a gradual thing and it might not even be for a long while yet xx

 

[emyandpotato]

Thanks, I will look for ankle supporting shoes! I think I'll ask the paediatrician about shoes when we go. Sequeena, I don't like Clarks shoes as I feel I can't trust them to measure him correctly. Every time I go in his size apparently jumps up or down a size or two, even if it's a day later. My MIL basically thinks I lied about LO's shoe size cos he got measured as a 5 and then a month later the same place measured him as a 4...

A little update on us: Rory had a nursery assessment and got 0-9 months for speech, and 8-14 months on everything else. I practically had a break down because I thought that, apart from speech, he was much higher than this, and I was just really depressed for about a week and convincing myself I'd given him foetal alcohol syndrome and brain damage (I got drunk on NYE because I found out I was pregnant). Then he lost weight and that was the final straw and I took him to the doctors and basically broke down in the office and the doctor said that actually he looked fine, but he's given us a referral to the paediatrician, and a follow up GP appointment to check his progress. Which is such a huge relief I can't even put it in to words! So we're waiting on that, and still waiting on SALT, but at least things are moving! Also, we're getting attempts at new words, which is fantastic! Must say though, dealing with the terrible twos with a child that doesn't understand as much as others might, and can't express himself, is bloody killing me!

 

[bumpin2012]

I hear ya Emmy. G gets sooooo frustrated because he can't understand/express what is frustrating him! He's an extremely stubborn little guy too, and will continue to try and make something do what he wants, regardless of whether its possible. Nothing will make him happy, and I am having to take things away and move them to another room. (not easy to move furniture at this stage of pregnancy either!)

 

[emyandpotato]

I hear ya Emmy. G gets sooooo frustrated because he can't understand/express what is frustrating him! He's an extremely stubborn little guy too, and will continue to try and make something do what he wants, regardless of whether its possible. Nothing will make him happy, and I am having to take things away and move them to another room. (not easy to move furniture at this stage of pregnancy either!)

Oh gosh I couldn't imagine being pregnant too! I am just at breaking point at the moment. He hasn't been well in about two weeks, and neither have I, and this just makes him in a worse mood. Literally all I hear is whine, cry, scream, full on tantrum, and repeat. He's driving me insane! And half the time it's because of something really basic like he wants something else to eat but he can't explain it to me and it's just so grating day after day after day!

 

[sequeena]

It is very hard when they can't tell you what they want.

 

[bumpin2012]

I think that's the worst. They KNOW what they want, but just cant tell you It makes me sad. G has started biting with frustration. Usually its his own hand, but this week, he's started biting my hand.

 

[sequeena]

Thomas is a biter too I have no tips other than putting him down and telling him he can't do that.

 

[bumpin2012]

that's what we're trying to do, as well as trying to give him the word. Right now we're working on help. hopefully it wont last too long.

 

[essie0828]

Love the pic of Thomas! He looks like he's having a blast. Makes me smile.

We have a swallow study next Wed for Hayley. Her eating has improved greatly but she will still hold food in her mouth and forget about it then choke. Kind of worried about the test as they use xray to watch her food go down and I cant be in there. Afraid she wont eat what they offer her and that her dad wont be able to get her to eat either. Her drooling is pretty bad as well and she's starting to spit in frustration. That's pretty embarassing. Her mouth will get full and insted of swallowing she will just kind of blow it all out. Telling her "No!" makes her laugh her lil tail off. So I basically just have to cover her mouth and say "Don't spit!" Hasn't helped much yet. She's a biter to. We curbed it with her chews for a while but she bit her dad twice this last week. One was severe enough to bruise and break the skin. Ouch!

Her walking has kind of stalled out and she's refusing to walk without holding my hand when she was taking some independant steps. Wondering if her braces are in need of adjustment. Ordered a bigger size shoe (8!) hoping the extra room will help. She's getting kinesiotape done every Friday on her tummy. It's helping to give her some feedback about her tummy muscles and she's picking her legs up higher. She was able to get her toe in her mouth She seemed so happy to get to nibble on them, like she had been wanting to forever.