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Struggling... (bit long - sorry)

(22 Posts)
hangsbyathread Wed 24-Jul-13 23:23:23

Please be gentle. I am a long time lurker, very occasional poster.

My ds is 2.6 years. He is around a year behind in his speech and language skills, has no concept of danger, cannot follow simple instructions (e.g - if asked to pass his shoes he doesn't understand), has problems with balance and motor skills, can't point or follow your finger to what you are pointing at and doesn't give eye contact.

We have always attended local sure starts. We have been receiving support from one of the workers. She comes out on home visits every 6 weeks and gives me activities to do with my son. We have seen very little progress.

The nursery nurse picked up that he was behind in his development at his 2 year assessment. 1st August she is coming back out to assess him again. I already know he isn't meeting the targets.

My sure stat worker wants to fill out paperwork to set up CAF meetings and is pushing for a diagnosis. She won't tell me what she suspects is wrong with him.

After a little bit of googling it's looking very much like my baby has autism. Fuck.

It feels like the end of the world right now. Please can someone reassure me that i am being a dafty and everything is going to be ok??

Sorry for the long post - didn't want to drip feed.

Any advice would be so welcomed right now.

I don't know what the future holds for you, but I do know that this is the absolute worst bit.

I'm so sorry.

What will be the point of the CAF?

IMO I would politely decline, go to the GP and get a referral to a developmental paediatrician.

If you've googled then you should have a list of symptoms. Write down all that apply to your ds (and look up ADHD, Dyspraxia and anything else you come across) and then write one or two real life examples next to them and give a copy to the GP. Video his worst or most concerning moments too. It feels disloyal but it is great to watch when you have figured it out and have learned how to help him make progress, to see how far he has come.

In the meantime, get the Hannen More Than Words book, and start going through it.

Research ABA and it's 'fit' for your family as it has the best evidence base for helping (though not always ethical providers so do research thoroughly).

Start a log of every contact or detail including things to follow up later with quotes and promises and phone numbers and names. It helps when chasing to be able to list the number of times you have called and not been responded to, or to give the date a promise was made if you are still waiting for something.

MovingForward0719 Wed 24-Jul-13 23:51:04

It's fab you are getting help this early. Hang in there.

claw2 Thu 25-Jul-13 00:07:04

Everything will be ok, regardless of what your ds does/does not have, he will still be your lovely little boy and he will still have you.

You will take it a day at a time and one step after another. There is always light at the end of tunnel.

I think your first step is getting a referral to a paed. Nursery nurse can make a referral to paed, so can your GP, the sure start worker probably can too. They can probably all make referrals to a SALT and OT too.

Health visitor started the referral process for us, following ds's 2 year developmental check. She referred to Paed, SALT, dietician and OT.

hangsbyathread Thu 25-Jul-13 00:21:12

Thank you so much for the replies. I have been off having a cry and feeling sorry for myself. This is a one of self pity party.

Starlight - thank you. I hadn't thought to question the caf meetings. I am completely reliant on these professionals who only see my son for an hour a week max.

Claw - How old is ds now?

Moving - really needed that. thank you. i will.

hangs... it does get better, honestly.

Getting a dx is scary, and upsetting and draining but having a dx is the start of your ds receiving the help and support he needs.

2.6 is still very little, doctors may be hesitant to formally dx him at that age but at least if he's in the system you'll have access to support and interventions like SALT, OT, etc.

I have 2 kids with dx and when they were 2/3 it all seemed very bleak but as they've gotten older we've all adjusted to their way of functioning and as each day goes by we learn new coping strategies.

hangsbyathread Thu 25-Jul-13 00:42:05

Summer... I volunteer at a group for people with disabilities. I think thats why this seems so bleak. I have met people who have had photos taken of them on the bus then posted on fb for people to poke fun at... I know someone who had his facebook page fraped and people posted peadophilic status' for the 'fun' of it...

I am a single mum who moved 100 miles away from an abusive partner a year ago. This feels like the biggest kick in the teeth.

I have moved us away from a total twat, started a new career to fit around my son (qualify as a hairdresser this saturday) and now this! When i had just started to think the future looked rosy for us.

Emotions are running so high tonight. Its been at least 6 months of denial for me. It's really hitting home. I am completely out of my depth and petrified.

Tonight is my pity party. I will be laughing at how dramatic i am being tomorrow hopeful

claw2 Thu 25-Jul-13 00:44:44

My ds is 9 now, he finally got his dx at 5 and half. Mainly because I didn't push it, didn't know my rights and didn't have MN at that time!

However all referrals were made after his 2 year developmental check. Wish I had MN at that time. So keep posting, MN is great for advice.

As Star says defo question the CAF and the purpose.

hangsbyathread Thu 25-Jul-13 00:55:05

Hmmm... why do you think they are putting caf in place?

hangsbyathread Thu 25-Jul-13 00:57:40

I have made no secret of the fact that autism was the last thing i wanted ds to be diagnosed with.

Do you think they think i am unable to cope and this is a way of checking on me?

hangsbyathread Thu 25-Jul-13 01:00:00

Claw - now your son has had support for 3 years would you say he is more 'normal'?
The support they give.... does that enable you to communicate better with your son or does he have better communication skills and now can communicate with people better?

So many thoughts rattling in my brain. Mind = blown

claw2 Thu 25-Jul-13 01:35:27

I really don't know the purpose of the CAF and wouldn't like to speculate. For example if they say its to establish needs, I would say a better way of doing this would be through a referral to an expert.

I wouldn't say he is more 'normal' as ive never viewed him as 'abnormal', however I know what you mean. I just see ds as having different strength and weaknesses. Having assessments and possibly a 'label' help to identify those strengths and weaknesses and understanding how best to improve on these.

Its easier when difficulties and the possible cause have been identified, whether that is how you can raise your own awareness and how to support/communicate with your ds or whether it opens doors to outside support, depending on what his difficulties actually are.

I really must get off to bed now. Im sure your mind is racing and I hope you feel better in the morning.

hangsbyathread Thu 25-Jul-13 01:50:04

Claw - thank you very much for your reply. I take from it that once a diagnosis has been made the easier i will find it. I really hope that is true. Sounds like it helped you so that has given me hope.

I mean no offence when i use the term 'normal' and sincerely hope i haven't offended. This is all new ground for me, although i have worked with individuals who have difficulties, but this is my son so all bets are off. If you can understand what i mean? I have always worn the support worker mask then gone home and communicated with people how i normally would.

PolterGoose Thu 25-Jul-13 08:00:36

Hi hangs flowers

Just want to add another voice supporting Starlight's advice.

The stage you're at now really is the hardest, we'd be lying to say it's a walk in the park once you have a diagnosis, but it does all get easier. As time passes you get a better understanding of your child's needs and you work through different therapies, techniques and tactics to find out what works for you and your child and life gets easier.

On a practical note, are you aware you can apply for DLA?

On a social note, do join in the Goose and Carrot threads on SN Chat, the G and C is our virtual pub and a new 'session' starts every Friday and is open all week 24/7

hangsbyathread Thu 25-Jul-13 09:43:51

Hi polter

Thank you very much, i will check the thread out.

Have left a message for my sure start worker to call me back. I want to establish why she wants CAF meetings and why she has let me assume they are standard practice.

Things are looking far better today.

I hadn't thought about DLA. We are on a tight budget but live a really good life. We want for nothing.

Thank heavens for mumsnet! I'm glad i posted now.

hangsbyathread Thu 25-Jul-13 10:26:18

Support worker has phoned me.

She says CAF is standard practice now which has put my mind at ease. I was worried she thought i wasn't coping.

I'm getting worried about the waiting lists.... Hmmmm.

Ineedmorepatience Thu 25-Jul-13 10:38:51

I was going to tell you that in some areas they have to do a CAF before you can access any services. The LA next to mine has this system. My LA was using this system last year but has stopped again now.

It is a long form and some of the questions will not be relevant to you but it should help you to get into the system.

You have definitely come to the right place for advise and support, keep coming on here even if it is just for a rant! We all have bad days.

You sound like a great mum by the way, you have already done loads for your little boy and he is lucky to have such a brave and strong mum.

Good luck smile

whenwilligetsomesleep Thu 25-Jul-13 11:09:13

I would go to the GP for advice and a referral to a developmental paediatrician. That's what I did with my little boy. Hang in there it will be ok.

Okay, if you go through with the CAF, focus on the key points. Don't give details any more than you need to i.e. you don't need your pregnancy, your break-up, your job or the reasons for your break up, unless of course you are clear that there is some support hanging on those facts and it is support you want. It's a fair question to as.

Personally, I don't like CAFs too much and wouldn't agree to one. The policy and system in my LA might want them but there is no law that states they must happen before statutory services.

My philosophy after quite a bit of experience in the system is that you don't want loads of people and services in your life, you want the least number and the most effective.

You also might want to suggest that you'd rather not sign the documentation that allows them to share information between themselves. You can tell them (written down) that you will be copied into everything and if anyone wants anything they can come to you and you'll supply it. This keeps you in control and helps you keep up with what is going on. It isn't so much that secrets and scary things will happen behind your back, but more that things won't get forgotten, or covered up because something was forgotten etc etc. You need to see yourself as the lead in your ds' life, because you are the one that will be the consistent person and will still be dealing with any issues long after they have left/got a promotion/resigned/moved away iyswim.

And still go down the GP route for a referral to a developmental paed.

claw2 Thu 25-Jul-13 12:20:20

Hangs I can see you mean no offence and none was taken, I can see you just want what is best for your ds and some peace of mind, the terminology isn't important.

Yes it did help me a lot, not so much the dx itself, but the assessments really helped me to understand ds better. At 2 years old, I thought ds was just a bit 'quirky', didn't eat and had a speech delay. The OT, SALT assessments really helped to identify his sensory issues for example. Once I knew what was responsible, I could read about it and put some strategies in place to help me to support ds.

hangsbyathread Fri 26-Jul-13 21:47:29

Starlight - Oh i wish i was as good with words as you. I am going to 'borrow' a lot of what you said in that post. One of my biggest fears is that we will have multiple services in and out of our lives, will have to plan our lives around appointments... I need to identify who will be most useful to my son and stick with those key people.

Already my sure start worker has asked me about my personal life - for example i went out for a charity ladies night on a thursday night, my mum babysat, the next day i was very hungover when she popped in and started asking about my plans for over the weekend and questioned what time i had got up. I was very defensive at the time but i don't want to seem like i have something to hide. Its making me rather miffed that i have to 'account' for myself. but hay ho.

claw Thank you so much for coming back on and reassuring me. I have never been good with words.

I have some experience working with 2 service users who were quite severely autistic. No experience working with children so i am reading up as much as i can.

On an extremely positive note my friend and her 2 little boys came with us to a very busy park with a paddling pool and donkey rides - both of which my son really seemed to enjoy. No melt downs, lots of slashing. Days like today make it feel like everything will be alright smile

cansu Sat 27-Jul-13 07:46:56

One way of avoiding the support worker getting too involved in your life would be to take your ds to gp and ask for referral to a paediatrician. You can then smile sweetly at support worker and tell her you prefer to wait for pead to assess your ds before making any decisions. I eventually agreed to a CAF when I wanted respite for my ds as it was the only way to access social cares support. I didn't however need it for a diagnosis and that was done via paediatrician. I would be making sure the support worker sticks to her job that is supporting you and your ds, not making judgements about what you do at the weekend. I think you need to be polite but clear with her. If she asks you questions about what time you got up, I would change the subject or ask her what time she got p or what her plans are for the weekend.

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