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

[sequeena]

I'm so sorry everyone I've been incredibly neglectful of this page. Welcome everyone, I hope you can get some valuable support here

Jen you're not alone I've had so many snide comments, looks, tutting, muttering under their breath etc about my son. It hurts but as time goes on I learn to just ignore these people.

Thomas' glue ear has gone for now he's still has hearing loss but they want to see him again in 3 months before they decide what to do. He wasn't very co-operative. He found the hearing test quite stressful.

His physio appointment went well. We had it confirmed that T does have hypermobility (quite severely actually) and hypotonia. There's really not much they can do it's just how his body is. The physio is going to send me exercises to hopefully help with the hypotonia then I can just take him back if things get worse. She explained that he's not aware of where is his body is so it explains why he can bend so much further (if you look up the beighton scale Thomas does everything on it). It also explains his constant diarrheoa despite a good diet (it causes an overgrowth of bacteria in his bowels), his flat feet and his hernia. We're taking him to podiatry tomorrow to see if he needs some insole type things to create an arch. I was also told he needs to stay in good shoes (obviously) and for them to be as tight as possibly. Essie I know your LO has hypotonia too my physio said lace up shoes are better than velcro ones as you can get them much tighter. I'd rush out and get lace ones now but I only just paid £34 for Thomas' shoes I really don't have the money to go out and get another pair.

Portage is going well and Thomas has been referred to a disability nursery where he will have his own 1:1 worker. Fingers crossed he will get a place

Overall I'm feeling better about his development. Yes he's in the lowest possible scale but he can only go up from here

 

[aliss]

Hi Jen,

My son is the same age (June 8 too!)

I don't live in the UK so I do not go through the same processes as you, but is there a possibility of seeking a private diagnosis? I live in Canada and we are also public health, but I paid $1800 for a private diagnosis with a team of child psychologist/psychiatrist/speech therapist/pediatricians etc. Our waiting list was 2 years and we deal with a language barrier so I had no choice but to beg a relative for the cash.

RE: social

My son goes up to random strangers all day and calls them mommy/daddy and takes their hand, babbling afterwards. He is diagnosed PDD-NOS (pervasive developmental disorder, not otherwise specified) which is the spectrum of autism. He is the most sociable boy in the world, despite not really being able to speak.

Your son really reminds me of mine. As for the attitude from others, been there done that too, I just remind myself how sad those people are and how they have no idea how blessed they are. I have another baby boy who is by all means 'NORMAL' and holy moly the difference. You have no idea how amazing special needs mothers are until you realize what they actually deal with. "normal' kids are... dare I say, a piece of cake. Whenever my little one throws a fit, I just laugh at him and tell him that he can't challenge me, I have a kid with autism and I can handle anything!!

Hi girlies i hope you dont mind me joining??

My 3.5 year old finley has special needs, it all started when he was around 18 months when he wasnt talking and had funny habits, and got referred at two,

he is now 3.5 and his speech is stil the same, he has a severe impairment and cannot say words or communicate properly. He also still has ocds and funny habits, dosent sleep well, and is behind in motor skills and self help. he also has severe webbed toes his left foot is most affected and its isnt the common webbing that people get, hes had genetic testing last year which came back ok.

he has a LOT of autisitc traits, however after his recent 3 day assessment at the child development unit, the report says he is a very complex little boy the main issue being his speech and motor delays. myself im still not convinced about ASD as he has soooo many signs of it, but they say because he is social he dosent have it which confuses me as ive read groups where several children with autism are social, its such a big spectrum!!!! he dosent eat well, likes sensory things (esp colours), dosent sleep well, hates change and often has meltdowns over walking a different way home from school etc. he dosent understand behviour charts or anything like that. Hes not potty trained yet we are trying but its not going very well atm

i struggle most days with him having meltdowns often over change and funny little things im constantly on edge. i just want some support really and to chat to others going through the same, its hard. i get so upset for him when hes trying to tell me something and i dont understand

everyone stares when hes having a meltdown too which makes it worse!!!! and the most horrendous thing happened last week, hes still in a pram, as he cant walk far still due to his behaviour and toes, he was kicking off because we were going a different way home and this absolute moron shouted from their car "shud be out of a pram at his age!!!!!!!!!" i honestly coouldnt believe it, how dare people judge when they dont know the full story!!!!! i nearly cried on the pavement it was awful

he starts school in september too and i just feel like hes so little and with his little problems, hes not even 4 til june and i just hope it goes ok.

sorry for going on, just need to vent a bit sending hugs xxxxxx

 

[RachA]

Yay for all of Thomas' improvements etc. you sound much more positive about it all Sequeena
There's nothing really new with Esther-she's just pootling along as she usually does.

 

[bumpin2012]

wow, sequeena. that's a lot of stuff happening. hopefully having a placement will help. glad to see your staying positive. you are right, he can only improve from here

 

[nicki01]

Nice to see you are feeling positive regarding Ts development!
I finally recieved our report from Charlie's diagnosis today its only taken 2 months and 2 calls to chase it up! :-o
We have an appointment tomorrow morning with pediatrician not sure what its about, I'm guessing just a catch up or discussion on what happens now? I'm going to ask how to go about getting Charlie's eyes tested as an everyday optition is not going to be appropriate! Charlie would have a whirl in somewhere so formal and there would a glasses tornado!!
Also need to ask about a dentist, she has one and has been a few times but they are not understanding only ever give us a 10 min slot and everything with Charlie takes alot of time and reasoning and begging and bribery!!! 10 minutes with someone who says open your mouth and let me poke sticks in is not long enough! Charlie screams and cries and kicks and squeels!
Going to see if they know of any signing courses/classes I can attend!
I've been teaching Charlie the signs for more, stop, please, milk and thank you for 6 months now with no luck however in just one day last week she used them all in context! And today she told me had done a poo! I was made up, she said 'dar (mum), poo, yuk' and pointed at her nappy! I asked her if I should take it out and she said 'ess peas!' I'm a happy mummy!

 

[RachA]

Are you seeing someone at the child development centre in Poole?
Also-are you NHS or private dentist? We have a really good dentist that doesn't push our children at all to have their teeth looked at.

Not sure how much joy you'll have looking for signing classes-I looked a year it so ago and there didn't seem to be anything available.

I can recommend Singing Hands dvd's though. If you do look into signing classes you'll need sign-a-long as that's what they seem to be teaching children now. Esther gets signing at Playschool and they switched from Makaton based to sign-a-long in September.

 

[moggymay]

Our dentist just asks them if he can look in their mouths, my youngest is scared of the chair moving with him on it so the dentist gets him to help press the buttons to move the chair then he climbs on.....the dentist doesn't touch unless they are willing, last visit he got him to open his mouth to RAH in a mirror and he counted teeth that way. A good dentist should be understanding of a little fear - I still hate going but it is a necessary evil.

Excellent work Charlie telling you she had done a poo and such a polite response to whether you could move it

We are in limbo now until we hear about a confirmed school place, pre-school are thrilled with his progress and he is finally starting to progress with some of the sounds we are missing but he will need support in Reception for the learning aspects, socially and toileting etc are fab, physically and understanding are bang on if not ahead just the speech still lagging....frustrating to think that had he been born 3 weeks later he would be ok as far as school as he would have a whole extra year to prepare and catch up Plan at the moment is I believe to have a support person in place for phonics elements of the day so potentially just an hour a day....the school we want has this facility already with staff who work with the current Y2, the children will move to the junior school in Sept and the staff then are free for reallocation to new children if needs be....really really want to get our first choice school, why do we have to wait so long!

 

[JenNeil]

hi everyone thank you for the replies sorry i havent replied sooner

moggymay im getting the same with fin, he starts full time school in september, i do worry about him, with all his little issues and toileting and everything else, but he has the suport in place,

aliss - thank you hun. theres no way i could afford private here, its very expensive, im lucky that ive had the support in place from him being 18 months. im not happy at all with the speech and language therapists though, he got referred at 2 and is now 3.5 and has still had NO speech sessions, they have messed around and said they need to work on his attention skills first and that came to nothing, now he has to go to a group thing for 6 weeks, so by the time he has "proper" therapy hes going to be near 4! i think its disgusting!!!

sequeena - im glad things are going well for Thomas

thank you everyone else for the replies, im just getting used to it on here.

regarding dentists, mine are going to where im going from next month - and ive got an emergency appointment for tomorrow as im in severe pain and cant tolerate it anymore, im not registered anywhere and cant get in due to all been private so had to ring 111 this morning so im not a happy bunny today. from next month ive found a practice we are all going to where we can pay monthly but boys are free so we going there.. i think lewis will be ok its just fin, it will be getting him on the chair and his mouth looked at so wish me luck for tomorrow as im a nervous wreck

 

[RachA]

Jen - i know its so frustrating but the speech therapists can't doing anything until their attention is a certain level. Esther has been seeing a SALT on and off since she was 2y 4m and they spent well over a year working on attention levels. When she goes for her next block there will be more speech involved. Now her attention is better she is actually picking up words and just starting to put small sentences together. I really feel your frustration. I'm another one who's lo starts school in sept and i do worry. Esther still hasn't got formal help in place yet either as we are waiting on a statement and we are not guaranteed it.

 

[sequeena]

I agree, unless they have the attention skills it won't work. Thomas had a block of 6 weeks group therapy at the end of last year and whilst he did try very hard he just didn't have any patience/attention to really focus. He's going to go into 1:1 therapy because group therapy clearly doesn't work for him. When that will happen though I don't know!

 

[Feathers]

Hi ladies apologies for my long absence, life with 2 children is very hectic! Mostly because of Olivia rather than my little boy who tends to just go with the flow!
We've had a few developments on the support front which is great
In the next few weeks our samples will be sent off for the full DNA gene testing in which they map out Olivia/Mum/Dad's genes in full so they can see anything that isn't quite right. We've been invited as part of a medical study as it's not available on the NHS yet, but either way if they find anything it's a good thing! Her clinical genetics doctor saw her and said that she has a few specific features that are similar to certain conditions although hasn't offered a diagnosis yet, we need more tests. (She has very almond eyes and a smooth philtrum plus flat feet) but she took lots of photos to discuss with other doctors also.

We actually booked to see a private speech therapist (bored of waiting for the NHS) who came out to see her and offered some support, it was definitely worth it! But typically then the NHS team came through and are visiting nursery and home. I've been offered a 6 week course but it's on portage afternoons so no can do! HOpefully the next time it runs it will be on a different day. Portage have also gone into nursery to offer some support there.

And on a good financial note, her 2 year old funding is going through for 15 hours of nursery care free based on her special needs! Should free up some of our money to pay for other things for her.

Olivia is being very difficult at the minute, hitting, biting, throwing things...she keeps trying to stamp on her brother. I can't leave him for a moment. She really hurts as well when she does it! We've been trying time out, telling her it hurts and makes mummy sad etc but she just laughs. Anyone else have experience with this and have any ideas? As she gets older her behaviour is getting harder and harder to manage and more worrying to me. She's just very hard work and I feel bad when I get frustrated with her Sorry just moaning more than anything.

On a more worrying note, portage and I think she has some sensory issues as she doesn't seem to feel any pain! She burnt her hand last week on the iron (don't ask) but doesn't feel it, doesn't register when she has fallen over and hurt herself. Seems a little worrying to me. I'll definitely be bringing it up with the paed!

Hope all is well with you all and your little ones!

 

[sequeena]

Hey Feathers good to hear from you (though I do have you on fb haha). Glad to hear things are moving forward. That's great, through probably feels like a whirlwind right now

Good luck with the DNA testing. It's an odd situation to be in. We're not that far on the genetics journey yet but I find myself looking forward to the day we (possibly) get a diagnosis. I don't want anything to be wrong with his genes but at the same time at least it's a clear answer and this long journey wasn't for nothing?

Sorry to hear Olivia is difficult right now - I hear you. Thomas also doesn't feel pain. He's forever head butting, falling over, cutting himself etc and not feeling the pain. I'm always finding new bruises and most recently a cut on his knee and I just wonder when he did it?! We're waiting for an occupational therapist to help us out with that.

 

[nicki01]

Thanks for the reply rach, yes it is CDC in Poole, seen the paediatrician and she has referred us to a dietician as Charlie's diet is beyond appalling, also bournemouth eye hospital for eye test and a dentist that works along side poole hospital and deals in special needs children! So got a few bits sorted there which was nice.
Went to our first salt today, it was a group of just 3 of them. We left the room and watched them through a one way window. It was just getting details etc today but will be really interested to see how it goes next week, met 2 nice mums there also who's children are also asd. I have been put on the waiting list to do a signing class but she said its super long so I'm not holding out hope, think she said it was called sign a long. Could be wrong tho, will have to find out. Will have a look into the DVD, really want to help her with this as she seems to be picking it up quickly now she has started, she learnt to sign biscuit today after being offered one at salt, came home and asked for one!

 

[aliss]

Is it just me or are we getting ripped off at everyone chance?


We live in Quebec which most of you know, is a francophone region. My psychologist's diagnosis is in French. We're moving away to an anglophone region and they require the report in English. The psychologist/team is refusing to write the report in English b/c they say their English isn't good enough, and the translators here are demanding $1000 for the TRANSLATION. It cost $1800 to get from a team of six medical doctors, and they want more than half that cost to re-write it in English??

FFS I HATE CANADA AND OUR LANGUAGE CRAP

"troubles du spectre de l'autisme" now I know that isn't in English but it is bloody well obvious what it means, why can't I just translate it myself and have them sign it???

My head hurts.
Sorry........... I'm pissed.

 

[sequeena]

What a bunch of b*stards. That's daylight robbery.

 

[nicki01]

That's is really out of order, hope you can get something sorted because that is a rip off. As if its not hard enough dealing with it all as it is without crap like that.

 

[RachA]

Thanks for the reply rach, yes it is CDC in Poole, seen the paediatrician and she has referred us to a dietician as Charlie's diet is beyond appalling, also bournemouth eye hospital for eye test and a dentist that works along side poole hospital and deals in special needs children! So got a few bits sorted there which was nice.
Went to our first salt today, it was a group of just 3 of them. We left the room and watched them through a one way window. It was just getting details etc today but will be really interested to see how it goes next week, met 2 nice mums there also who's children are also asd. I have been put on the waiting list to do a signing class but she said its super long so I'm not holding out hope, think she said it was called sign a long. Could be wrong tho, will have to find out. Will have a look into the DVD, really want to help her with this as she seems to be picking it up quickly now she has started, she learnt to sign biscuit today after being offered one at salt, came home and asked for one!

Not sure if you realised but i'm in Bournemouth too. Would be willing to meet up if you want to.

 

[essie0828]

Hi girls

I've tried to post in here a million times and keep deleating it accidently or having to run off after the kiddo. Ugh.

Omg Aliss don't pay that. I know there are translators somewhere that are qualified, and surely translating a written won't cost 1000$. Check a university. College kids are smart and work cheap.

 

[essie0828]

That's just plain wrong to do to people. Aliss I really hope that you don't have to pay that hun.

Sequeena how's little T? Hope he is liking his PT exercises.

Feathers sorry to hear Charlie is acting up on you. We are having a bit of an issue with that as well. DD is getting to be rough, I'd be a nervous wreck if there was a little baby in the house.

We've been to see the CP team at CCH and got some new info on DD. It's kind of good news really, the CP docs think she is primarily hypotonic. Meaning we may not have serious issues with tone related tightness, so we get to avoid baclofen and botox for now. When I asked the doc if she would get high tone later he said it's not likely. We would have seen it by now We've been given an order for a swallow study and reccomendations for hippotherapy and warm water therapy pool, Hopefully we will have her riding horses come warm weather I also spoke with a social worker who has given us tons of info on lots of services avaliable to us. Her medical expenses will always be covered, no matter our income, after we apply for a government waiver And we qualify for respite care and daycare at a medically supervised facility Girls I'm thinking about going back to work soon. DH and I can manage our schedules where she would be in daycare 3 to 4 hrs a day at a facility qualified to give her therapies. It's so tempting and so scary. DD can't communicate properly and we have our own little language other people don't understand, even DH. I feel terrible just thinking about leaving her somewhere but I can make enough money to put us in a house in the country with a big garden. As opposed to a small townhouse in the city with a mostly concrete, tiny garden. Its a huge decision with tons of scheduling nightmares. Not to mention DH is struggling and I am a little worried about him being responsible for getting DD up and ready for a whole day. Grrr. Making life changing decisions sucks!

 

[essie0828]

Feathers I'm so sorry. I mixed you and nikki up. I ment to say Olivia dear.