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

[AmIWhatAndWhy]

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.

Bloody brill idea to have drop in salt centre. What everywhere needs.
Hopefully they will recognise his needds and get him 'on the books.'

Welcome to MN/SN board. Your introduction to the 'system' sounds very unsympathetic and probably the very last that you needed. I'm surprised your paed. mentioned ASD so quickly - although my ds is very severely affected, we must've had several appts with his paed. before we went through the ADI/ADOS process. In fact, the paed. initially said that my ds had a 'social and communication disorder', without specifying any further. My ds got his formal dx when he was 3.5yrs old.

I would hold onto the pre-school place until you know whether your ds will be able to attend or not. Are there any SN nurseries in your area? Your ds may be able to attend a combination of mainstream sessions and SN sessions, depending on how he progresses - in fact, you may want to insist on such a combination up front. You are in charge.

It's probably all a bit of a shock right now and it does take time (years?) to come to terms with the fact that something is amiss with your child BUT there are some good professionals out there who will be able to give you some good advice, some moral support and who will be able to work with/progress your ds.

What you need to do asap is to find and make contact with a SALT so that he/she can: 1) assess your ds so that you know where he is developmentally 2) set up a regular schedule of SALT sessions 3) set your ds some SALT goals and 4) get some advice on how you can be working with your ds at home

To achieve number 4, you should aim to read up as much as you can about speech & language disorders and ASDs. The Internet is a good place to start but there are plenty of books available too.

You are at the start of a new journey. If you have any further questions, then please ask.

Thanks, we got the impression he was reeling off 'stock phrases' iyswim.

The notes he put in our red book are the exact same as the HV wrote, which are almost word for word what DP said to her when he emailed asking for a referral.

I just hope we can get something going, health care provision is fairly poor around here, they are very oversubscribed.

I agree Moondog that it's a fantastic idea, they do all sorts of similar things at this centre, easy access to specialists that you'd usually spend months waiting to see. I just wonder why they seem o be keeping it quiet, why wouldn't our HV or the pead tell us about it?

I'll let you know how it goes this afternoon. Just hope the rain holds off, it's a fair walk and DS has serious issues with his rain cover on the double pram. Usually I'd let him get soaked, he likes it, but not today hehee.

Thanks again, this advice so far has been invaluable. It means a lot to have 'friends' in similar positions. When I get time I'll have a look trough earlier posts of yours.

Prob. not meaning to keep it quiet. Just don't think to publicise it. Best of luck.

Hi, I don't have any experience with autism but my DS2 has a severe speech delay, (amongst lots of other problems) and he attended a mainstream play school with one to one support.

I wouldn't cancel his place just speak to the leader and ask for a referral to the SENCo so they can apply for the extra funding.

Good luck with the SALT this afternoon. What a fabulous resource!

what part of London are you in (rough guide only if you prefer!), my Ds doesn't have autism but I know quite a lot about things available in our area and some of the surrounding ones. We are just outside SW London.

Meant to add also, sorry about the treatment by the paed, I have found the most useful info to come from other parents, both on here and in rl.

Hairy - I don't mind, we are in Lee Green, just between the Lewisham and Greenwich borders, frustrating as Greenwich seems to have much better NHS funding.

I'm off out now, I hope we get something from this drop in, I'll let you know.

Thanks again.

Hi AmIW, Hi. Sorry you have had such a difficult few days.
Getting a diagnosis (suggested or definative) is a shocking thing even if you expect it. Its perfectly normal to react and feel bewildered. I think parents have different priorities - the medics (trained to think dispationatly and logically) want to catagorise, - parents are practical and want to know what/how to DO to help and get the best for their dcs! Personally I have not found much support or useful information on treatment from the paediatricians, perhaps because there are no mainstream pharmocological treatments to 'fix' pervasive develpomental disorders! MN, other parents, paediatric nurses, health visitors,salts ots, local support groups, the NAS, CEREBRA, and books have been more helpful.
Have to rush to collect ds will chat later!

My ds has Aspergers and was diagnosed in one pretty short appointment. It is a shock, and the paed did seem quite brutal, but it doesn't meant the diagnosis is shoddy or wrong. His hand flapping, lack of eye contact and general oddness of conversation made it pretty obvious, with hindsight (even if not at the time).
Re your MIL - I know how upset you are by her reaction, but she is in shock too, and panicking and upset about her grandson. People often behave 'badly' when shocked and panicking. She clearly does want to help - hence the supplements and googling - so this is a good time to enlist her help, ie ask her to help fund some private SALT. You can apply for DLA - Disability Living Allowance. YOu can find information on claiming here:
www.nas.org.uk/nas/jsp/polopoly.jsp?d=1041&a=3330

You can look for services in your area here:
www.nas.org.uk/nas/jsp/polopoly.jsp?d=131

Your local NAS branch can give you help and support from people who understand what you are going through.

Stuff about different interventions:
www.nas.org.uk/nas/jsp/polopoly.jsp?d=297

Also some people swear by Portage - information here: www.portage.org.uk/
I've just got DLA for my son - so have others here and can help you with the forms. A word of warning, they are emotionally draining to fill in as they force you to focus on what your child can't do rather than what they can, but the money is useful if you are going down the private therapy route.
My biggest tip is that you start every single sentence with 'because of his autism...' - so 'Because of his autism X cannot communicate his needs effectively so will need support and someone constantly there to translate for him' etc etc

None of us can know for sure what the future holds for our children. I know how shocked I was when I found out our son had a fairly difficult form of dyslexia and would always need additional support with writing, spelling, punctuation, even using a dictionary or encyclopedia. And he's now 15. It's taken a lot of work to get him the support to be equal with the others.

Me, I'm on the autistic spectrum, a married mum who runs a business and does a reasonable amount of national work for autism issues. The NAS reckon there's about half a million people on the autistic spectrum in the UK, and most of them grow up to be people somewhat like me. Not all. But most. Like I say, we can't tell.

In other words, assume nothing. It's not a disaster. Things change, though I'd be pretty stupid to tell you it'll all be easy. Lots of brilliant people here - ask them anything

Hello AmIwhatandwhy!

I felt really angry for you after reading what the paed said about your wee boy. My youngest DS was dxd ASD at 2, but we had lots of help from a very progressive child development centre. My cousin, on the other hand, who's DS was eventually dxd aspergers, originally got sent to parenting classes. Nice eh?

I'd like to echo what others have said, the national autistic society are really helpful. I'd agree too with Aefondkiss: your paed sounds extremely slapdash. Don't cancel your DS's preschool place. You are right, it will do him good to be there. And the staff are trained to be able to identify problems. If you discuss your concerns with them (which I'm sure you would do anyway) they will be able to bring in special needs assessors, and access things like SALT that way.

Aren't MIL's really wearing? Don't let yours get to you!! Mine jumped up and down insisting that the doctors were idiots and we should take DS to another hospital for another DX. It wasn't helpful. DS has been on a gluten & dairy free diet for five years: you want to hear her voicing her opinions about that!! I just smile and say 'oh yes that's right' these days!!

Please don't beat yourself up either about what you should or shouldn't be doing for your son, you are doing your best. It is really, really hard having to come to terms with the reality that your child is different, and people who don't have to go through it don't understand. A friend of mine who's son has a language disorder says its like getting on the plane to Spain and ending up in Katmandu! It is a lot to come to terms with and it's early days.

I really hope you get the help and support you need.

Lol xx

Hi again, sorry to have not posted recently. I think I've been a bit in denial which can't help. My other half has done the flipside and gone into overdrive buying books, doing loads of 'learning' activities with him etc, which I'm not sure is helpful either.

We're in a bit of a muddle tbh.

Lots of things have come flooding back , or started to stand out as 'abnormal' iyswim. But it's hard to differentiate between normal baby/toddler behaviour, or a 'sign'. iyswim.

He did something this morning which he hasn't done for a few months but used to habitually. He stands and spits bubbles onto his headboard whist making a moaning sound. He'll do it until he has a whole row and then go back and pop them and start again. he gets really angry if I or his sister distract him or intervene.

I also recalled this thread I posted ages ago, why didn't I act then?

www.mumsnet.com/Talk?topicid=67&threadid=552004#11273871

Am, don't give yourself a hard time. It is all easy in hindsight! Your dh sounds great.
Remember also not to pathologise everything.

Hi, missed your original post. Just wanted to say welcome. Also read your link - that must have been really horrible for you but you shouldn't beat yourself up about any of this. My ds (asd) is 8 now but still does things I am at a loss to know how to handle, having said that IME it has got easier as he has got older as I have learn't to read him better and avoid triggers/frustrations. It's all quite overwhelming in the beginning (and still occasionally now) but things do settle down and it isn't all doom and gloom.

I was similar in that DH was all 'lets get started then' but I just needed to get back to being as we were before dx before I could think what to do next.

Hi, AmIWhatAndWhy, just wanted to welcome you, I've got a DS3 who has just turned 4 and is autistic. He also regressed although earlier than your little boy - it started around the age of 18-19 months and by the time he turned 2 he was very withdrawn.

As others have said, please don't give yourself a hard time - he is still very young!

You will find this place an invaluable source of support . And help .

Thanks again.

Rereading that link has made me a bit angry, so much insistence 'it's because he's a baby still' , just as I had from my family. Why didn't I go with my gut and seek help earlier.

Although help has been quite slow coming so far. I forgot to mention we were initially refused to be seen at the salt drop in as a referral had already been put in, I challenged it and we were seen but it was very brief. I was asked the same questionnaire questions I'd already done with my health visitor, GP and the paed, and then she asked DS a few questions. He was engrossed in the duplo and blanked her.

That thread was less than two months ago, so please please please don't feel you have delayed things. Don't beat yourself up.

And don't be angry with other mumsnetters who were just trying to help as best they could.

I got sick of answering the same questions over and over too and eventually flipped out at a health visitor and asked why they couldn't all pass on the info. Very frustrating!

A lot of people just don't know what to say - or simply just don't understand. It doesn't sound like anyones making things easy for you though - hang in there.

There is no point in blaming yourself or anyone else about what has gone before - you will only drive yourself crazy and i bet you will not find a single parent with a child with ASD who had an easy path to thgat particular diagnosis. It is always hideous.
And i promise you that most people posting that any behaviour is 'normal range' ALWAYS do so from a kind intent.
I have actually been lambasted occasionally for suggesting that toddler behaviour may be ASD because we hate to feel that a poster is being burdened or worried.

It is so hard and i hope you find some support here - the posters here are fab.

FWIW my son has seen seriously huge improvements through EFA's and diet changes. And my MIL promptly dissappeared (with FIL) leaving my eldest DS heartbroken while we all tried to cope with his brothers diagnosis.

We did a huge amount of reserarch before we even got DS2's diagnosis so don't feel you have to wait for the slow official response.
If it were me i would get MIL off my back by getting her doing some research for me.

I hope you feel a bit calmer about things soon. Be kind to yourself for a while. The shock is so hard.

Back to the guilty parent feelings today.

I've spent all morning sorting their room and getting rid of toys they have grown out of and realised most of what they have is more appropriate to DD's age (20 months)

Most of their books have been utterly destroyed too, he has a habit of picking at them until they are ripped to shreds (the 'special' ones are kept out of reach.

We simply can't afford to go out and buy lots of new things, but I really feel we need to. Do you think it would be rude to put a 'wanted' post on freecycle? We've given heaps away (in fact the old toys are gong on there today). Or am I likely to find good (cheap) things at car boot sales/ nct etc?

Also can anyone recommend anything specific? I'm thinking role play things like fancy dress, duplo, a play kitchen (we had one but he destroyed it) etc might help.

Thanks again.

DS3 (who has just turned 4) still plays with a lot of "baby" toys, especially if they are "cause and effect" type toys, or if they make music. So don't feel bad about it.

IME the best toys to go for are ones which can be used for turn-taking games with an adult - these can be very simple, like just rolling a ball between you. DS3 also loves Click Clack Track and Roll Around Mountain from ELC, shape sorters, puzzles particularly three-dimensional ones, hammer and balls/pegs games etc.

Swinging is also very good for children with ASD. If you have another adult around, you can get your DS to lie on a blanket and you and the other adult can pick up the four corners and swing him gently from side to side. Squishing is good too - get him to lie on a soft surface like a sofa or bed, get a cushion and gently "squish" him - not too hard obviously! Deep pressure like this is often very comforting to children with ASD.

I don't know what your little boy is like, but role play type stuff is just beyond my DS3, although he does like snuggling up in a spaceman suit when he is watching TV (!). Similarly imaginative play, although he does copy stuff from In The Night Garden (and as a result has a lot of In The Night Garden toys).

DS3 also loves Thomas, fortunately so did his older brothers so we have a huge collection of Brio track and engines. You can get a starter set pretty inexpensively and if it is a hit then yuo are sorted for years of birthdays and Christmases to come.

Do you have a local toy library? If so use it, just try different things, some will be hits and some won't be.

Don't worry about the trashing books phase - DS3 used to tear/eat his but he has become much much better about it.