General Chat

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Hi :-)

First I want to thank everyone who gave me (((hugs))) the other night even though I couldn’t say why at the time. Thank you also to those who sent me pm’s on the night and in the following days.

Sorry this is so long.

First I have to explain that when my son was three he was diagnosed with severe speech problems and moderate learning difficulties (MLD), he‘s now 15. There was no more specific ‘label’ given but as he was being given the help he needed I didn’t push it, I wasn’t even sure if there was a specific name or if it just came under that title. Since then he was helped first at a place called the Star Centre which helps pre-school children, then he had a place at nursery with a one to one helper followed by a place in the infant language unit at a special school. In 2005 his school merged with another special school in the area and the LEA opened up a new, state of the art, school, which I have to say is fantastic. They thought of everything when they built that school, it was built and designed with the kids in mind. Most important of all though is the way the staff are with the children…they really are brilliant with them. My son has improved in all sorts of ways while he’s been there.

Which brings me to why I needed those hugs the other night. I was at his parents evening on the Wednesday night talking to his teachers/assistants and they mentioned his ASD. When I asked what it meant I was told it stood for Autistic Spectrum Disorder. Now no one has ever mentioned this to me before so it came as a bit of a shock. I told them what Alex had been diagnosed with at 3 only to be told, no, he doesn’t have MLD he has ASD. They advised me to go to my doctor and ask for a referral to have my son assessed for ASD because it will affect the type of help he will get when older. I want to see a certain doctor at my surgery because I have confidence that he will listen to me and not just try to fob me off which is the impression I’ve got from another doctor at the practice when I’ve seen him for myself but this doctor is very popular and I don’t want to disrupt my son’s schooling so I’m waiting for Easter hols when I can book an appointment for anytime of the day, when this doctor is available.

Needless to say this has come as a bit of a shock to me. If it is true and I tend to believe his teachers, they’ve spent the last couple of years with him and know what they’re talking about, it answers a lot of things, it makes sense of some things. All these years when I’ve thought he couldn’t understand me when really it’s the other way around, I know nothing about autism apart from the fact it varies widely from child to child. It’s been on my mind since last Wednesday, it was all I could think about Wednesday night and has kind of built up over the weekend. It wasn’t helped by my receiving a letter from the DSS, the carers division (sorry can’t think of official name) saying my carers allowance has been suspended while they investigate whether or not I’m entitled to it. This is because I’ve started a degree in Cultural Studies which is run at my local college but validated by LJMU, which I attend while Alex is at school.

If you managed to read this far (I won’t blame you if you couldn’t lol) thank you for listening.

Juliexx

More ((hugs)) for you and Alex. Hope it all works out well for you xx

Oh Julie - you have been through so much, well both of you. Let's hope your GP does all the right things and don't let the DSS get you down, fight back girl.

Keep posting about it and let us know what is going on won't you

Love and hugs, Ann XX

Julie ...so much to cope with in such a short space of time (Hugs).
But I am sure you will get the help and support you need and more importantly once established if this is the case your son can too - which has to be good right?

((((((((((((((hugs))))))))))))))) again hun
hope your son gets the suport he needs and answers from your doctors

and hugssssssssssss for u hun

luv
stray
xxx

Julie,

I can't remember the full circumstances, but there was a case on our local news in the last week or so, where a woman had lost her carers allowance for her disabled child because she started on a college course. In the end she did get it back. Please fight to retain your carers allowance.

Elisabeth
x

Awww sweetheart what a bombshell for you :O(

I know nothing of autism so i can't offer any advice - only words of encouragement.

I can't imagine how hard it is and has been for you to manage as you have - but credit to you for doing so and for being able to take steps to educate yourself further in the process.

You should be proud of yourself and your children and just be confident in knowing that you WILL learn how to cope with this new challenge and you will do so admirably.

{{{{HUGS}}}} for you and your bairns xxx

Thank you everyone :-)

I do intend to fight for the carer's allowance if I have to, at the moment it's just suspended so I may not lose it.

It just came as a shock to discover that Alex has ASD and not MLD. I can't help thinking things could have been different, maybe I would have understood some things more. Although I did decide when he was first diagnosed that I wouldn't make excuses for his behaviour, I've always insisted that he behaves himself and has good manners (which he has for a 15 year old lol) but maybe I would've tackled some things in a different way, maybe a better way more suited to his needs.

It doesn't matter to me whether he has ASD or not (apart from any future help he may get)...he's still my son and I'll always love him, no matter what.

well said julie

right from your heart (((hugs))

Thanks Anne

I will cope, I always have. I've got some books out although I'm holding off reading too much until I can get a proper assessment of his needs.

Yes, I'm proud of both my kids.

don't go beating yourself up with what if's Julie - that'll do no good, you did what you thought was best at the time with knowledge you had at the time - no one could have done better

Thanks Joy :-)

Oops and Ann lol

Julie I am sorry that Alex and you have got this far without hearing the diagnosis ASD, if this is the case. Particularly if you were so happy with his earlier schools. I work at a nursery for under 5s and we can spot the ASD children at 2 yrs. We don't come across very many, as you will appreciate, but when we do we get the right agencies involved asap.

We have a 2 yr old right now who we are trying to help. His parents are in denial but we can see he is so different to his peer group that we are getting as much advice and help for his parents as we can. His Mum still thinks he will be a "normal" child in the next few months and I feel so sorry for her. He moves into my "leavers" group this summer and I know he will need one to one care to manage anything in our class. I also know he will upset the other children because I have had ASD children in my group before. This is a sad situation and there are no winners. We will try so hard to make him happy and fulfilled while he is with us.

Good luck to you both Julie. please let me know how you both get on.

Hi Helen

I think a lot of the problem may have been that when he was first diagnosed he very rarely spoke..only the odd word. He did see a speech therapist all through school and one of her reports, which I came across the other day, did say he had delayed development. Also Alex isn't as far along the spectrum as some of the other children I've read about, at least I don't think he is, he's certainly not locked in his own world. I won't know exactly where he's up to until I see the doctor, get a referral and get a diagnosis.

I will keep everyone updated and once again thanks for listening.

Hi Jupee


More (((hugs))) Your son sounds like he has a great school and a loving Mum so he is lucky lad but am sorry it was a shock for you. Recognition and diagnosis of ASD has come on leaps and bounds in the past 12 years (tho not in all areas) Look to the future now Julie - What if's - are no good for us!

xxxxxxxxxx

Kaz

Julie, my son had severe speech problems and went to a special speech and language unit in a main stream school. Even after his MDA I never was given a name for his problem. I think it is/was dyspraxia. Clumsy child syndrome as it is sometimes known. He is 23 now. Just got himself a promotion to trainee assistant bakery manager in a well known store. I never thought I'd see the day he worked full time. Drives 30 miles a day to his new shop. His speech is still not always clear but I am over the moon with him. I hope your son gets the help he needs, and soon. It's so slow to happen isn't it! Don't worry too much things have a way of working out xxx

Hi Kaz

You're right, it's now time to look forward and get things sorted.


Carole you must be very proud of your son. He's done really well. Alex's speech isn't always clear and sometimes I have to ask him to repeat things but try not to because he gets frustrated and upset so I try and listen really carefully to avoid it.

Dee thanks for the hugs :-) They're not inadequate at all, just knowing that you care helps.

Have no wise words to offer you Julie. Everything has been said. But well done for being such a loving and caring Mum. Alex is a very lucky boy. BC XXX