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Here are some suggested organisations that offer expert advice on SN.

Feeling utterly lost and bewildered, and not a little bit sad and angry

(52 Posts)
AmIWhatAndWhy Thu 07-Aug-08 11:14:52

I'm new to this topic on mn, but hope I will be welcomed and someone can advise me.

DS is 2.8 years old, and has had a real regression in his verbal and social development over the last 6 months or so. It's now at the point where his 20 month sister is at about his level.

Our HV referred us to the community paediatrician and we had a two hour appt with him on this week, which I was quite impressed by (the length of time, not the actual content). It did however seem a lot like a Q and A session, rather than anything meaningful. The only thing he did with DS was to take his height and head circumference and listen to his chest.

He has referred us for a hearing test, which will be in around 6 months, something I don't feel he needs as his hearing is absolutely prefect. He's also booking us to have bloods done. We are now on the list to see a SALT but have been told it will be almost a year. He labelled him as autistic, which I thought rather unprofessional given the short amount of time he had with him. We asked for advice on activities/ books/ excercises, even changes in diet we could be doing to try and help DS whilst we slowly get ushered into the system but he offered no advice.

He also suggested we should cancel his preschool place for september in case he has to go to a 'second tier' nursery. I was left in tears and feeling bewildered and helpless.
I can't shake the instinct that being in a preschool will help him.

My MIL (to be) has been awful too. Within minutes of me talking to her she emailed me countless links to studies on Autism, and then decided it was all because we gave him the MMR (against her advice). She has been nagging me non stop about it which is far from helpful and even told me if I give our DD her second MMR it is akin to child abuse (!?)

Can anyone help or advise me at all, I don't even know what I need help with but just feel so down and helpless. I want to do all I can for my precious little boy, but no one is telling me what.

FioFio Thu 07-Aug-08 11:19:04

Message withdrawn

moondog Thu 07-Aug-08 11:19:13

Gosh AMI, you have been treated so horridly!
Let mew first tell you that this is a great place to get support and advice.

moondog Thu 07-Aug-08 11:21:33

I am a salt in this field. I would first suggest looking at Nat. Autistic Society website.

moondog Thu 07-Aug-08 11:22:56

I would go to GP and complain at your appalling treatment and ask him to get in contact with salt dept.

moondog Thu 07-Aug-08 11:22:58

I would go to GP and complain at your appalling treatment and ask him to get in contact with salt dept.

moondog Thu 07-Aug-08 11:23:33

You need to be seen ASAP. If not, could you pay for private assessment??

AmIWhatAndWhy Thu 07-Aug-08 11:27:24

Thanks, it's good to have someone impartial, and experienced to talk to.

I feel so guilty, maybe we should have had him seen earlier. I was constantly being reassured (well meaning of course) by my family and friends that it's 'just a phase' or 'it's a boy thing'.

Plus there's the enormous issue of facing the fact that there may be something wrong. It's odd, lots of friends have been sympathetic 'oh poor you' etc but if anything it's made me love him even more. He's my tiny man after all, and he's a very happy, loving boy. He can do lots of things, it's just his communication which is the issue.

I already feel bad for moaning here when I know some of you have much much bigger issues, but who knows where this could go for us, it's such early days?

AmIWhatAndWhy Thu 07-Aug-08 11:29:46

moondog, thanks I will look there.

I've looked into private, we are in London so there should be a lot of choice. We need to raise the funds first though. I am a sahm, and we are just about getting by at the moment with two preschoolers on one salary. Especially given our massive mortgage increases lately and the fact we are saving for our wedding (could be delayed though if needs must). I am sure my family will help, so long as it's not a massive cost, can you give me an estimate?

MmeLindt Thu 07-Aug-08 11:32:42

I have no experience of autism or special needs but wanted to say welcome to MN and I know that you will find lots of people here to give you help and advice.

Don't listen to your MIL and don't let her make you feel guilty, you are doing the best you can for your DS.

AmIWhatAndWhy Thu 07-Aug-08 11:38:28

Thanks, I have learnt to ignore her, she's always been very 'full on' to put it politely. This morning I took delivery of about £60 worth of Omega 3 oil and multivitamins she took the liberty of ordering from boots. As if that will work magic.

He has a brilliant healthy diet, food has never been a issue. It just seems overbearing of her, fair enough she wants to help, but why not ask how she can help instead of wading in. Grrr.

I am not new to mn btw, been here since 2004, and changed my name a while ago. Just new to this topic.

moondog Thu 07-Aug-08 11:40:57

Am, this is the most reputable register.

moondog Thu 07-Aug-08 11:41:17

Look for someone with an interest in ASD or semantic/pragmatic disorder.

moondog Thu 07-Aug-08 11:42:00

Assessment and reprt might come to 150-200.As I said, get onto GP.Early intervention essential.

MmeLindt Thu 07-Aug-08 11:42:32

shock at her ordering vitamin supplements for you. "Full on" was rather an understatement, I suspect.

moondog Thu 07-Aug-08 11:43:08

Don't feel bad, you haven't done anything wrong.

moondog Thu 07-Aug-08 11:43:20

We can't rush every child into intervention because of a few baby quirks. smile

moondog Thu 07-Aug-08 11:43:45

Excuse mad short posts. Laptop stuffed.

moondog Thu 07-Aug-08 11:44:11

Look in the SN archives too. Tonnes of useful stuff.

moondog Thu 07-Aug-08 11:44:44

Tell your dh to keep your mil clear from you too.

sphil Thu 07-Aug-08 11:56:13

Hi Iam. Haven't got time to post at length now (potty training my 5 yr old who has ASD)but just wanted to say that your story could be ours. We saw a paed when DS2 was about 2.5 and got very similar treatment, though not quite as bluntas yours.The hearin test, the wait and see approach. No advice about intervention whatsoever.

There is LOADS you can do but you need to give yourself time - it all seems totally overwhelming at the start. Will post more later when I'm no longer on wee-watch grin. Others will be along too I'm sure. This site is a godsend!

Aefondkiss Thu 07-Aug-08 12:09:26

hello AIWAW, that Paed sounds awful, tactless really, unsupportive and unhelpful! though it does sound like quite a long appointment, did he say he was going to send you a report?

I also feel for you re your MIL, she sounds like an interfering busy body! but maybe her heart is in the right place? At least she is showing an interest, maybe she will help fund private appointments? It would be much more useful to you than random vitamins!

my ds is 4 and we still don't have a diagnosis, but he has had help since he was about 2.5 yrs and is being treated as having an ASD as far as I can tell.

It might be worth getting in touch with the nursery to talk about your concerns about your ds and see if they can help? My ds had no support at nursery to start with, then at the beginning of this year he got a one to one assistant, three sessions a week.

Is your ds going to go 5 sessions a week?

BriocheDoree Thu 07-Aug-08 12:11:23

Hello, welcome to the SN topic! My DD has a speech and language disorder. Many of her behaviour patterns match those of ASD kids, although we currently don't think she's ASD. However, it can be very upsetting when you first realise that something is "wrong". I'm sorry to hear that your MIL is such an unhelpful person. (I could use some stronger adjectives here as it sounds like she's kicking you when you're already down!). I hope that you get some more help. We got everything kicked off when we got a private SALT assessment and the results of that helped put everything into place. I hope that you get some good help on here soon.
Sphil, hope the potty training is going well! DD was a nightmare and then one day just did it, so there is hope! (Although you've read my post about certain ongoing issues...but I've decided to live with those for the moment).

deeeja Thu 07-Aug-08 12:24:50

Hi, sorry for the way your appointment went, some paediatricians are like robots and have no bed-side manner at all with parents, what an absolutely shocking way to introduce you to the notion that your ds may have autism!
I also think your mil could be a useful ally, maybe you could steer her towards some literature that you might be reading your self and involve her with that. I understand what you are going through though, my in-laws have read one or two articles and think they are experts now. They also blame me, but it could be they are still recovering from the shock themselves, and looking for an explanation why, which could be your mil's reason for blaming you re mmr.
As for the nursery, find out your local authority's policy regarding early years action and early years action plus, also you could start a statement for your ds. There is no reason your ds can not go to a mainstream nursery, especially if you think he is less than a year behind.
You have got alot to get your head around, and need to take the time to relax a bit, and find yourself some support, this is a good place to start.
I remember being in the same stage as you, it was only a year ago. In that time I have managed to do some things, but not everything.
Do not feel guilty, you are doing so well to get your son referred and get the ball rolling, I know plenty of parents who sadly have no referral for their child. You are being an extremely good mother and your son and other children are lucky to have you! Your mil, by the way, is lucky that you are the mother of her grandchildren.
Take care!x

cyberseraphim Thu 07-Aug-08 12:28:40

Don't worry about what your MIL told you. Regardless of her own beliefs ( which I most definitively don't agree with), it was insensitive and rude to attribute your son's problems to a routine immunisation.. Tell her to look at the autism advocacy sites grin She might be genuinely surprised to see how strong the opposition is to the opinions she has picked up so easily. Why not try to get on the Hanen Progam if there is one running in your area ? Look at your son as an individual, not a bundle of autism issues to be resolved. What are his strengths and weaknesses? What can he do and not do? Don't rush into expensive therapies and be suspicious of people who don't want to let you 'try before you buy'.

It is very early days, My ASD son has made huge progress since being dxd. My brother has high functioning autism and he has a very happy and successful life. You are right to be worried/terrified but there is definitely much still to hope for even if it is not quite what you expected.

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