Hi, can I join you? :)

[WearMyKissx]

Hey everyone

I'm Destiny, 22 and I have a son who is 2 years 3 months old, named Ryan.

We have very recently been referred to childs development team, speech and language therapy, audiology and an eye doctor (can't think of their technical name) as for some parts of his development (speech mainly) he is behind with & they think he might have either ADHD or autism, but obviously hes still young.

He was born at 35 weeks due to IUGR so part of me is thinking that might have something to do with his delayed development.

This has come to a shock for us really, but obviously glad referrals are going in now for him, rather than later in life.

I was just wondering how long it will probably be till the first appointment? The speech and language have a drop in until the appointment comes through at the hospital, and we have been advised to go, so our first appointment is Tuesday. What would they actually do?

Many thanks and hope to get to know you all

 

[Marleysgirl]

Hi there

(Love your name - if babba was a girl, she was going to be called Destiny!)

How long it takes for first appointments really depends on your own Health Trust, something we have learnt that differs even just over a few miles - I'm Central Manchester & Sherryberry (daughter Millie also prem) is in Stockport, it's only a short distance but the medical attention our babbas receive differs quite greatly! For example, I can't tell you what they do at Speech therapy as we haven't had a referral yet (but Millie has).

Do you think Ryan has hearing or sight problems? My boy Andrew definitely has a hearing loss but they are unable to measure how great, we think he's also got some attention disorder. He's had two sight tests (optometrists?) and they've come back clear.

Out of curiosity, how small was Ryan, and how does he compare to toddlers of the same age now? Andrew had severe IUGR and is now 20m, wearing 6-9m clothing, he's pint-sized

Try not to stress, and stay positive - Ryan is going to get a thorough MOT (if you'll pardon the phrase) and then you'll have guidance on where to go from here

 

[MrsRabbit]

DS had delayed speech and in 1 year went from non-verbal to surpassing what they'd hoped for a 3 year old. He also has SPD and at first they said Autism or ADHD. DS was full term but only 6lbs.

Good luck with the up coming evaluations.

 

[WearMyKissx]

Hi, thanks for the replys

Well, he was born 4lb 12oz but had low sugar levels for a long time, but he got huge quick and height wise, I think hes the same height as some toddlers his age, but he was always a hungry baby. He weighs 28lbs, but was only 27lbs last year so not that much of a weight gain. Aww Andrew sounds tiny! Bless him

Yeah, I spoke to my cousin over the weekend and she said Portsmouth weren't giving her much help, but Southampton was - thats not too far from me but I suppose like you say, different trusts do different things - she has two children with autism.

The hearing I don't think he does, nor with sight. The sight I think was mainly due to family history as on both sides theres severe astigmatisms, with the hearing he has been holding his ears a lot with loud sounds but thats all we've noticed really - sounds bad really doesn't it? LOL He hardly responds to name and has a short attention span. His speech, he says a few words, but make words up for a few things too.

He was slow with crawling (12 months), sitting up (9 months) and walking (17 months) so he might just be lazy. But as you say, hes having a full MOT and take it from there

 

[WearMyKissx]

Well, we went to the Speech Therapy drop in, shes also refferred him for speech therapy. Currently 31 people on the list, and can take upto 6 months to see someone so if he hasn't seen someone by October, she'll see him again at the drop in. Asked us to do more signing with him, which so far is working.

 

[Midnight_Fairy]

Hi I am in southampton and my son was diagnosed last year (although we started the process from 2yrs 9mths and I knew all along, it just got delayed) He is now 6 (almost 7) My son had various assessments and the ADOS test eventually. I still have all his paperwork even pre diagnosis, if you want to chat send me a PM and we can chat on FB?

Emz xx

 

[velvetina]

Hi hun,

These early days are critical and you can still be doing so much to help with your concerns until such time your lovely little man is seen. I would suggest having a look at the National Autistic Society and finding out from the early years intervention team what support groups/networks your area offers.

I learned a huge amount from specialised chat boards with autistic mums, some who were taking huge steps in intervention, others less so, but all thoroughly fascinating and guaranteed to learn something to help your toddler.

Keep talking to him, pointing out names of things, keep your language very simple and short, repeat what you say. I talked non stop sometimes to ds, very frustrating I know when you get nothing back, took him out to socialise , and above all don't be afraid to chase the referral.

One thing I learned was my borough (well the one we lived in when ds was small) had a reputation and complete inability to diagnose asd early when it was obvious and this I have learned is very common, probably all about money. It all came to light when he kept being referred to speech and language units within mainstream schools, and turned down. When the new borough did the same, I told them he was autistic and they asked where I had got this. Err he is my son, I should know. It appears he came to his current school with a diagnosis of global developmental delay with delayed expressive speech and language. Excuse my french but a load of Sh**!!! He had a pretty quick referral with the psych team at the hosp, along with my extensive notes I had kept on every aspect of his development (this is also a really good idea because you can forget things), instant diagnosis no quibble and hey hoe his special school got the funding with him.

Sorry I digress, it does frustrate me for new mums, it's hard when you are facing a possible special need and support of the right kind makes all the difference. Enjoy your lovely boy hun, I have said it before, but if I could have seen the difference in my son as each year passed, it would have eased a lot of the heartache that people don't always talk about. I am so proud of him, he has achieved more than I ever thought possible, and I am sure your little one will too. x

 

[WearMyKissx]

Hey, thanks for the replies. Well a few weeks later he has come along with sign language so hoping to carry that on. I have made friends with a lady in the area who is going through the same thing as us with her son, whos 3, so I'm hoping to take Ryan to more groups that she goes to with her son, there is hardly any support groups in the area, she even told me about a younger mum groups for under 25s that I didn't even know about.

The child development team appointment has come through for middle of June, not getting too worried about it now, just glad they want to keep an eye on him incase he has trouble with school etc.. But am wondering what kind of tests they'll do with him?

 

[WearMyKissx]

Hi all

Since I've last posted we've had some "fun" so to say.

We decided to try and put Ryan into a pre-school, within 2 days they chucked him out for being a "nightmare child". Apart from the fun with them, we have had our child development team assessments. The lady whos done it all etc... is 75% certain he is on the autistic spectrum, but she wants to get any hearing problem ruled out. Obviously more assessments etc.. to find out where on the spectrum he is. But one question I do have, she advised us against taking him to a pre-school in September, when he'd be 2 years, 8 months. Would it not benefit him? We took him to a different one last week as a visit, and he enjoyed playing along side other children, not with them, for about 45 minutes then he had a tantrum - this is normal for him. Could that be why she advises against it? We have also been referred to Portage, are they any good?

Many thanks if anyone can reply My heads still a bit of a mess!

 

[Midnight_Fairy]

Portage are brilliant. They managed to get my son 1-1 funding at preschool and also helped me a bit how to manage him at homE XX

I am sorry the preschool called him that I think a preschool would help actually to be honest, I dont know your son though. My son was awful when he started but the 1-1 helper stopped that.

Bets of luck xx

 

[Marleysgirl]

As midnight-fairy says, Portage are fantastic - so I've heard!

Not that we have Portage here, Andrew is under the Pre-Schools Special Needs Service run by the Council ...

But my pal Sherryberry takes her littl'un Millie along to Portage sessions, and it sounds as if they play a similar role to the PSSNS. Portage has a website so check it out for more information.

We have a meeting next week that will include a discussion as to when Andrew may be ready for pre-school: 2yr actual (21m corrected), 3yr actual (normal time), or 4yr actual (delaying by a year).

 

[WearMyKissx]

Thank you for your replies.

We have a meeting with the new pre-school tomorrow to let them know the latest and see how they'd be able to help him. Me and my OH (Ryans dad) are a bit worried he might need more 1to1 support rather than group but spose don't ask you don't simply know. The other pre-school which he got chucked out from also grabbed him by his shoulders to tell him off, he simply laughed at her and she said "Normal children don't laugh at me, Ryan does" so the LEA have got involved now in regards to them.

There is a waiting list for Portage here but they'll come out before the Speech Therapy and hopefully before the next CDT assessment, but there is a support group for children under the CDT, no matter what the reason is, and the woman from Portage goes there too so might go to the next session with Ryan and hopefully meet other mums who are in the same position as me.

 

[WearMyKissx]

Hi all just an update really. In August Ryan had a hearing test and was all fine, but since last update he has been a whirlwind! Behaviour and mood swings have changed a lot, he now can not handle loud sounds, he is hardly sleeping. We are also under Portage now and have seen her for past couple of weeks but they're only with us for another 4 weeks and to be fair its not going to help him. Saw the paediatrician on Friday and our son has been diagnosed with ASD which was no surprise, as we were there she got on the phone to the special needs school in the area and he will be attending there after our visit on Thursday.

Don't know how to be feeling about all this really, it just seems to be one thing on top of another really :/ I'm glad he has been diagnosed so quickly and at a young age and that he will be getting the correct support that he needs.

 

[Midnight_Fairy]

Hiya, hope your ok, Even though I knew in my heart that my son had ASD the weeks after were rocky.

Is it a preschool he is attending? x

 

[WearMyKissx]

Hello

Yeah, well, they take children from the age of 2 - 19 who have additional needs, he will be with other children his own age though. Doesn't need to be statemented as he is young but they are preparing it now anyways which I think is good (also the school will be dealing with it all)

 

[littlelinnies]

hi! my daughter has austism, and she goes to a speical school for austic children, since shes gone to this school, shes improved loads.i'm sure this school with help your child no end xx

 

[WearMyKissx]

Thank you, I hope so! He attended a mainstream pre-school (we were gonna let him go to another one but we wanted to wait to hear what the doctor said really) and they couldn't cope with him and were quite horrible to him in my personal opinion. The school he will be attending has such great reviews from other parents in the area x

 

[littlelinnies]

yes i had simliar problems, kids picking on her ect, and the teachers not being able to cope with her! shes so happy were she is now! it will make a big change/help to you and your child. xx

 

[Midnight_Fairy]

My son is in mainstream atm, we have just started a new nurture programme with him and some other SN students. Its going well x