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

[RachA]

Feathers-that's great re the dla. We've got to fill our form in. I used to deal with benefits before having my kids and I'm so not looking forward to it.



Had a total meltdown with my OH earlier. We've got building work going on that's been ongoing since Oct last year and it's really getting to me and along with E's stuff I think it all just built up. I usually try to make sure I don't shout at OH in front of the kids but I was just so upset that I lost it. E was there and was laughing at me shouting. When I gave her a cuddle after age was looking at me wondering why in earth I was crying!!!
Think I need to draw a line under today and start again tomorrow!!

 

[emmi26]

Hi
Can I join in ? My little boy Harry is 3 he has autism, global development delay, hypermobility, and hypotonia he's non verbal and we have just gone through the ehc plan process and Harry's plan will be finalised in august he will start at special school part time in September we are in the pilot area for ehc plans if anyone goes through this new process and needs a hand I'm happy to help if I can we have found it actually ok and had wonderful help from Harry's specialist early years lady
Onto Harry he's the cutest little man always happy and he constantly flaps at everything he loves water and water spray give him a sprinkler in summer and that's it you won't get him out again that's for sure !!
He's non verbal but babbles constantly wee wee and woo woo are his favourite noises lol he's in nappies he has no idea what any toilet stuff means and he doesn't understand hardly anything he has to be shown which is hard cause he doesn't make eye contact either. Harry also still eats baby food he can't cope with lumps his low muscle tone means his suck swallow isn't that good and his autism means textures make him sick if it's not something he likes too .

Anyway nice to meet you all Harry's newest thing is to throw things and he's just chucked an empty bottle at me which I'm taking means he wants a drink of milk lol

Emma

 

[annanouska]

Harry sounds great! You sound very upbeat too I'm quite new to the group my son is 2 soon and on assessments for autism, epilepsy and " learning difficulties" . He is non verbal too as lost all his speech months back. He does have great eye contact tho and very animated.

Pointless excitement but today he held any empty cup to my mouth fr me to play drink, most interaction ever from hm x

 

[emmi26]

That's brilliant !! It's the tiny things you really notice and that are big achievements Harry could say a few words before his second birthday but he stopped as well but he regressed and stopped speaking.
I've just been up to find Harry no longer wearing his pyjama bottoms or his nappy I have no idea why lol but Harry found it funny lol

Sometimes you have to laugh

My other half has nocturnal epilepsy he fits in his sleep so I know that's scary too hope your little one is doing ok with that at the minute

Emma

 

[sequeena]

Hi emmi your son is similar to mine he has GDD, hypermobility and hypotonia and a few other problems. My son isn't non verbal, he has some words and signs but he is nowhere near he should be at this age. He's around 15 months behind.

Can I ask what a EHC plan is? It rings a bell. My son is going through something similar he's being put onto a pathway which from September is how they'll do statements for school. He's not going this year but it's good to know we will have the appropriate steps in place for when he does go.

Ann that's great news about your LO I am so pleased.

AFM Thomas has been doing quite well recently but his walking is suffering. He can bounce on the trampoline for a while and potter round in the garden but trying to get him to walk anywhere is a struggle. Fingers crossed he'll have his wheelchair by the end of the month

His understanding seems to be getting better too which is a massive help. Today he has passed me the TV remote when asked, nodded when he wanted a drink or something to eat and shook his head when I told him it was bath time

He can also now sign 4 nursery rhymes. Not perfectly but my God it's amazing to watch him.

Sleep is still a massive issue. I feel like he will never sleep through.

 

[emmi26]

Hi
Aww he does sound like Harry Harry walks like a little drunk man his low tone and hypermobility make him wobbly
Your little man sounds like he's making some big steps bless him Harry's also getting his wheelchair by the end of this month he was measured up for it a few weeks ago .
Ehc plan is the new statement from September all statements will be an ehc plan it stands for education health and care plan they last for 25 years once awarded. The plan is a legal document written by your council all the people involved in your child's life are asked to fill in a section stating what help support and care the child needs so Harry's has had statements from his early years specialist his consultant his physio his speech and language therapist it all goes onto the plan and then the council state how much support your child must receive in school so if your child is going to mainstream school the council might award full support meaning your child would need their own carer in school. Harry's needs are high level so his plan states he needs specialist education meaning special school which is what I wanted for him anyway.
It's all to protect them and so that all their needs are met Harry's plan states he needs 4 hours physio a week this will be provided in school if they didn't they would be in serious trouble it's a legal requirement for them to follow the plan and give the support stated it protects your child by making sure they get the right support.
Definitely worth thinking about the plan can be altered so some children have one and get 6 hours a week support meaning for certain lessons like our little ones would need support in pe even if they were perfectly ok in every other area.
Hope that made sense lol

Your little man signing nursery rhymes sounds amazing ! Bless him what a clever little man Harry's early years lady tried to teach him a basic sign but he doesn't understand his autism means he finds most things hard to understand poor little man was terrified by this mornings thunder storm found him quivering in his cot screaming

Hope your little man keeps up the good work

Emma

 

[emmi26]

I've just been upstairs to find Harry has managed to rip down his curtain wrap it round himself and fall asleep I'm not even sure how he reached it !!
Sometimes I wish I knew what goes through his mind he's been full of it today pulling on anything and everything and laughing least he's happy

Emma

 

[annanouska]

Harry sounds really funny. I've just got curtains for Los room as even with a blackout blind its bright. I can see this happening to us too

Emmi we have to back back for another EEG this time a sleep one. No idea why they wouldn't tell me anything but I'm thinking its odd to be recalled? It needs doing so that's that maybe its to check like your OH that its not a sleep fit thing?

I just presumed it would be normal or not normal and wed go from there. All they said on phone was dr looked at it today and wants us back for a sleep one.

Language...we lost all speech but I've managed to get 4 words back of a sorts but only if I say them to him. Eg I will say daddy he will copy daddy. He will never volunteer these words or say like he understands what they mean? Not sure if this is a developmental thing or a sign of echolalia tho I think he's a bit too small to notice that? Ill mention it to the development team coming on Wednesday.

I got told today by somebody he's defiantly not autistic as he is so smiley and looks so normal ( evidently ALL autistic people are meant to look,like aliens!) this is true, he does seem very happy but I never mentioned the autism possibilities his neurology paediatrician did kind of thought it was a stupid point

How is everyone doing? I'm excited to see if either Harry or Thomas get those groovy wheelchairs with patterns on the wheels! X

 

[sequeena]

Breaking my heart here I'm struggling with T's violence he managed to cut my cheek open yesterday. It's not deep but it hurts. I almost broke down to the nursery manager today and she's promised to get onto OT. I know it's not my fault but I feel a complete failure I am losing control of him but I'm not sure I had any control in the first place.

I'm also excited for his wheelchair no news yet though. FX it'll be here by the end of June.

What dumbass told you that don't they know that autism has a SPECTRUM

Yay for the words! No idea if it is echolalia but at least he is saying them. Almost all of T's words are only said if I say them first xx

 

[sequeena]

Also the repeat EEG is a bit wtf why don't they ever tell us anything?

 

[annanouska]

oh sequeena if it helps I shut his stair gate on his room and walked off yesterday and made a cup of tea

I have the worst bite he's done on my arm its broke skin its horrid plus a bite on the cheek too and several pinch and grab marks on the arm I was so angry ( know its not his fault) and sore that I had to walk away.

It's not your fault nore his its just how it is I don't really know how to deal with it. I just say I won't let u bite me and try to redirect but doesn't always work.

Its annoying we don't get told stuff do they not think we then worry?! X

 

[nicki01]

Sorry not been around much lately. Hope your doing ok with school bits and bobs rach. Welcome to the new names around!

I've been struck down with tonsilitus all week, just started to eat again 2 days ago as the 10 day course of anti biotics have started to work and I've woken up today with my eye swollen half shut and a really bad head ache! Don't know whether to go back the doctors or not.
On a better note, Charlie sang the whole hello song today with the other children at nursery and was the train driver on the sound train, no idea what that is, but its social and she has never done it before

She has just tipped a bag of sausage rolls on the carpet as their is pastry everywhere, debating whether to put the Hoover on before it gets trodden in but tori has JUST gone asleep and it will wake her up! Hmmm.... Decisions! Lol.

 

[rebrrr]

Hi everyone. Sorry that I didn't post again after introducing myself before. Not even sure when that would have been now. March I think after I got the results of the Ruth griffiths test. I have been stalking this group!

Things are still up and down here. My beautiful girl started walking a few days after her 2nd birthday in April. She was just so pleased with herself! We actually had a follow up with the comm paed and a physio in the Monday afterwards. It turns out that my daughter is slightly hypermobile, and has particularly bendy ankles. So she has now got some supportive boots and has physio every 6 weeks to try and catch her up on the gross motor side of things.

The comm paed wanted a genetics blood test to rule anything out there. Waiting for end July for the results. My daughter is also on the waiting list for a three half-day assessment nursery for a more in depth assessment of where she is.

In the meantime nursery still don't seem to think there are any areas for concern particularly, and she has just moved into the 2-3 year olds room. I still keep checking her against the early years outcomes document, as age wise she has moved up a bracket in some things.

I think it is great that they are checking her out further, but I am getting frustrated that the waiting for this assessment alone is taking many months. I really think she would benefit from SALT. Her speech and understanding really isn't on par with her peers in my opinion and I don't see the point is waiting for the other assessment when the first one indicated she was 7 months behind.

I have a follow up with the hospital paed this Friday, who Refered us to the comm paed. I'm hoping she will agree with me and help to push for SALT.

This is all so exhausting. How do you lovely ladies find the energy for this? Especially those of you have more than one child - I'm in awe! Xx

 

[aliss]

REBRR
You get used to a new normal, but it's okay to cry in a pillow when you need to. Supportive friends mean the world to me. I have friends with "normal" kids but who are so understanding and kind - even if they don't really understand, they are good to have around.

My boy is improving so much, he has 1:1 behavioural therapist and has been in an inclusive preschool full-time for 2 months now. I have so much freedom with just one typical kid (his baby brother) to care for. Wow. It's amazing how easy life is with that break. He is making massive progress, turned 4 a few days ago and is now able to speak in mostly full sentences (still struggling with articles and pronouns). He is learning to respond to questions better and to let us know what he wants. We are moving across the country in a few weeks, and I hope that doesn't disrupt him too much. Still nowhere near potty training but I'm happy overall.

 

[annanouska]

pointless moan but I can't cope with the violence. I've so many bruises and now a huge cut down my cheek where he scratched me.

He has been so good with his one little friend he tolerates for a while now but today she was in the car ( little tykes) he gripped her arm dug his nails in pulled her hair and bit her . I left in tears I feel awfully that's when he went for me when I picked him up.

I don't know where to even get advice or help. I see the hv again in a couple of weeks I can ask her and this out reach person next week who is coming any tips? I know Thomas is violent any others or advice? I'm gonna have no friends at all now, they all don't bother with me as little guy has been so unpredictable and then he does this again today to the one he and I do have.

He's been fab with other children recently just keeps his distance, this was all over the car. I moved the car away and it got better but obv went for me again. I look like a battered wife.

The salt and early years people, who came yday seemed quite dismissive about the asd ( raised by the paed) and that he has lots of positives with his communication which he does. They are all very recent that he points and interacts with u, but I've been here before then he looses it all again.

Feel generally fed up I think. Is like we are seeing all these people who say different things and u go in circles and nobody really " helps" tbh unjust get fragments of input x

 

[nicki01]

Sorry your having a tough time Anna. I don't have any answers really, Charlie gets violent, she punches me in the face and just generally attacks me, I have 2 false teeth that I had fitted as a teenager and in the last year she has knocked them out twice!
I've asked for advice and help with her behaviour as she is so powerful at just 3.5 yrs and I can barely hold her/restrain her but all I get is suggestions like trying time out, reward charts etc. its all useless, she doesn't understand any of it and doesn't care that she hurts me and doesn't care about rewards etc!
Its hard so hard! Wish I could help but your not on your own. Xx

 

[sequeena]

Massive hugs for everyone. How are we? How are our kids doing?

Thomas is up and down. Still suffering with major separation anxiety and his sensory issues seems to have gone into overdrive. He is also choking every day now. It's got to the point where I don't even panic it's happening that much

We have picked a nursery for Thomas it's more of a flying start play group that takes private children. It's 2.5 hours every morning but Thomas will be going on a Wednesday and Friday. He will also have his support worker I'm so pleased. It's lovely there but they can have up to 30 children at 1 time and their ratio for staff to children is 1:4. He should start in a few weeks.

Still waiting on his wheelchair, getting very excited now though. Still waiting on OT and the longer we wait the worse his meltdowns are becoming. He is chewing more and more on the inside of his cheek and now has 4 ulcers.

 

[bumpin2012]

ladies. Im still here reading the thread. Don't have a lot of time to comment these days though!

G is good, progress is continuing every day. We found out that we are not moving, (we were told we were being posted across country 8 months ago) so having to contact all our supports to get him back on their lists is getting annoying.

Our condo is back on the market, hoping to be in a house by the end of summer/early fall. Not easy with a tornado of a toddler and a newborn. (who is already 6 weeks old!)

 

[Plex]

heya everyone - can i join too?

My little boy is nearly 3yrs old - 2yrs 11 months and 7 days to be exact

He had a review just after he turned 2 and the HV said that she was extremely concerned about his understanding, speech and language. I disagreed, and did for some time until this friday just gone. I feel awful about that.

In the mean time he has attended reviews with the speech and language nurse and attended a block of chatter matters courses - both of which he enjoyed.

I got him in a nursery asap after the assessment and he's been very happy there, the staff said how good he was and his understanding, speech and language were advanced for his age (they were saying this in april this year) The nursery decided to move him into preschool in May (he should have moved in sept). Obviously with these comments I felt confident in my feelings that I shouldnt worry about him.

Anyway just over a week ago he had his 3yr assessment and the HV assessed him to be delayed in 5 areas, his cognitive skills being the worst - that of a 2yr old He co-operated fully and completed all the tasks, I was happy for him to be referred just in case. Hes going for vision check this thur, STILL waiting for speech and language specialists referral (since feb!) a couple of other im not sure with the names but i know ones for autism and the other is from the disability team. Im going to call HV and insist on a hearing check too - dont know why that one was left off?

I speak with his nursery after EVERY session and all has been well until friday when they told me that they wanted to refer him to the disability team!! That was a shocker but the manager did discuss why and i agreed, apparently when asking other to play games he askes himself ie-wanna play ball Samuel? so the other kids dont understand him, he plays by himself alot because of this - it breaks my heart

At home hes fine, his understanding is good and he carries out complex tasks.

Sorry im really rambling here - theres so much more to write but dont know how to put it

Im so so glad ive found this page, ive been reading through your journeys and your all an inspiration! xx

 

[RachA]

Esther went to bed without her dummy tonight-I'm soooo pleased. I just hope that if doesn't get harder as this evening was so easy. She's slept a couple of times at my parents without it during the afternoon and then last Sunday night she slept there over night and my mum forgot about it and said she slept fine. So this evening I thought I'd give it a go. She did chatter in bed for about an hour and randomly called out for me. But she does chatter most nights-just not usually for as long as she did tonight.

I'm going to be so pleased if this works tonight and for the next few nights