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Please help me out - having an incredibly hard time

(37 Posts)
Ravenousbeast Thu 27-Aug-09 09:21:45

To cut a long story short - am a long term mumsnetter but name changed.

Have a new baby 6 months who has been referred to specialist in developmental disorders. Doesn't smile much, no laughs, no giggles & has low tone. I am trying to deal with all that.

At the same time my ds1's behaviour has become more & more difficult in an odd way. Without needing to discuss this I have realised that he has autistic traits. I know this & don't need to talk about why I think it. I have always sort of known he was different and I now feel sure.

I feel run over & clinging on to my life as it seemed to be which has been smashed to pieces in a matter of weeks. My dp doesn't want to talk about ds1 with me. He says he is absolutely NOT autistic & is angry with me for suggesting it.

I feel that I need to get help. These are what I need:

1) how do I start with ds1 getting him help? I want to know as he'll be starting nursey in Jan. I want to know how to maximise his positives & not to react to the negs which I find bloody irritating at times.

2) Can I dream of him with a "normal" life

3) I want some help for me. I'm bowled over & sinking at times. I want peer support & to be able to talk freely & even laugh.

This is in the smallest nut shell I can manage as ds2 is screaming
x

claw3 Thu 27-Aug-09 09:29:13

Morning its bloody hard work being a mum, especially when you have 1 special needs child, let alone 2.

1. Have you spoken to your Health Visitor or GP?

2. I dont see why not, what is 'normal' anyways! i prefer 'coping'

3. GP, friends, family and us [smile}

claw3 Thu 27-Aug-09 09:32:31

Oh forgot to add my DP was exactly the same, he refused to talk or accept that our son had a problem at first. He did come round eventually. Not much help to you now, but you are not alone and there is light at the end of the tunnel x

trace2 Thu 27-Aug-09 09:32:59

(((hugs)))))) you sound like i did when i had dd2 two years ago she as and still have big health issues and we was just going through ds being asd .

i just want to say we are here for you!!!

Ravenousbeast Thu 27-Aug-09 09:35:52

I need to know what if any support parents get?
Do local groups exist? I need something - not ADs or the like....I feel removed from all my close friends becuase this is not their experience and I feel guilt & such heavy sadness.

Marne Thu 27-Aug-09 09:36:14

Sending you lots of hug's, i know how you are feeling, both my girls have been diagnosed with Autism in the past year (dd2 only a few weeks ago), i have days where i get upset thinking about what kind of future they will have (and dh and i), i have so many questions going through my head ,will they ever leave home, will they have a family and will they be able to work. Dd1 keeps asking me if she will have babbies one day, i wish i could answer this sad.

Since the dd's have been diagnosed i have lost most of my friends so i havn't got a great support network (apart from mn)

Dh found it hard to except the dd's autism and didn't really talk about it until they were diagnosed, now he is more understanding and does his best to understand them.

You need to talk to your GP about your concerns with DS1, its best to get him the help he needs early on, we knew dd2 had ASD when she was 2.5, we managed to get her a lot of help (SALT, special nursery etc..) and she has improved so much over the past 6 months.

Good luck and i hope you get the support you need.

claw3 Thu 27-Aug-09 09:42:15

You could contact your local Council and ask if their are any parent support groups.

phlebas Thu 27-Aug-09 09:42:42

You're having an awful time (hugs).

We got dumped in pretty much the same shit a couple of months ago (just weeks after my dd was born) ... if it helps at all I think you're reacting perfectly normally.

I am terrified for my ds' future (he doesn't talk yet), I still cry every single day, I wake up my a knot in my stomach & pure panic every night, I feel sick & can't eat. Have got horrendous PND ... our lives are completely changed. Our plans for all our children, not just ds.

We've been completely dumped by the statutory sector (after they launched the bombshell at us) ... we won't even see a paediatrician until October (process started in April). So I'm not at all sure how the process should work - we're using an ABA consultant & BIBIC to sort out an educational programme.

luckylady74 Thu 27-Aug-09 09:46:15

homestart sent me someone for 2 hrs a week when I was sinking with small baby and as yet undx sn eldest ds - every little bit helps? The hv contacted them for me.

My local asd parent support group welcomes all - they wouldn't ask if your ds had a dx or be bothered that he hasn't. I have found it invaluasble talking to people who live in my area who have been down the route before me so they know all the local services/people.

My hv contacted the paed who eventually dx mu ds, but you can also have your gp do it. If you go with a written list of what you have observed about your ds then this helps. imvho dx has helped my ds immensely and his positives haven't been lost- he got support at preschool and now school because of it and I get to talk to a psych about him too which helps me too.

I don 't tell many friends the ful,l extent of the traumatic times at home, but most people have some issues and my closest friends can laugh with me when I'm making the best of it with jokes, my dh is on the same page though- you need to keep talking to him about this.Does he know you aren't coping?

What's normal- I look at my own extended family, none of whom have autism, and their lives don't follow the norm particularly.

It helped me to realsise that if ds ends up living with me for ever then that's not the end of ther world is it-a significant number of people without autism do that and there's other options if he doesn't want to.

The nas website has recently helped me with the not reacting to the negatives - look at the sensory integration page. It explains so much about why they react the way they do and it's very helpful.

You've got a lot on your plate. Talk to everyone you can is my advice and push for a dx.

luckylady74 Thu 27-Aug-09 09:54:14

Mumsnet has saved me above all else really. When I was struggling down the road in a downpour with newborn twins and a 3yr old who had an irrational fear of the rain I could get home and go on mumsnet where I found people who had the exact same issues with their rain fearing dc and could make me laugh about it too!You are not alone and though your ds is unique most of his traits won't be.
I hadn't met anyone in rl who reversed their prononuns like ds, neither had his teachers or his paed - mumsnet had many examples to give me and lots of people to tell me that it would sort it self out and how to help h
im.
Post about everything thsat drives you mad!

grumpyoldeeyore Thu 27-Aug-09 11:43:10

I feel the same worries about DS3 recently diagnosed with autism, behaviours getting worse because LEA not do anything until get a diagnosis and then after 5 months and do get diagnosis won't do anything until after summer holidays - and then probably oh well he's not 3 yet and not entitled to nursery place yet. Practical help you can get - apply for DLA you don't need a diagnosis to get this we got ours before DS3 was diagnosed we just had a letter from paed saying he would assess - this might help you buy in some help if can't get Homestart etc. You can ask Social Services (usually Disabled Childrens Team) to assess your needs as a carer as well as your childrens needs - push for help / respite and if awarded ask for direct payments again so you can choose the help you buy in eg a specialist sitter so you can have a night off. Look at Contact a Family website for what sort of services you might be entitled to. Do you have a Carers Resource they can tell you about local groups. The best chance for ASD lies with intensive intervention as early as possible but can help at whatever age your child is - best outcomes are ABA and specialist nurseries; many children do improve, some alot. I am sorry your partner is not on board but you can't wait for him you need to get help sorted out. Ask for Portage to start asap (teachers who come and do play skills etc each week at home you don't need a diagnosis for portage) once your child starts nursery this will probably switch to an outreach teacher who goes into the setting and trains them eg in ASD. However the Portage teachers will have had time to collect info and try some strategies at home so hopefully will make transition to nursery better. If you contact your local NAS branch you can find out from other parents which nurseries have experience of ASD, you don't really want one that will have to reinvent the wheel to accommodate your child. The shock does wear off after a while although you still worry about everything, there are alot of ASD kids functioning well, its hard to see that at the age ours our but many do make big strides around 5-6, I have to hold onto that. What I do know is that the longer behaviours are entrenched the harder it will be to change them. You can get lots of books on ASD for free by joining the Cerebra lending library they also do a good guide for completing DLA forms for child with ASD.

Ravenousbeast Thu 27-Aug-09 12:14:40

Wow - thanks to everyone...grumpy, I'll be taking notes from your post! I have spoken to a local support centre this morning & feel better that there are things that I can do. I'll be back reading this again later

Ravenousbeast Thu 27-Aug-09 12:16:33

Just to add - my partner is absolutely fantastic. It's just we're in different places (physically & emotionally) about all this at the moment. I'm at home with the 2 children all the time and I feel I just know what I know and I NEED to get on with stuff!

Marne Thu 27-Aug-09 12:25:16

Hearing some of your stories makes me see how lucky we have been with the help we have received for dd2, she was given a place at a sn nursery/opp group when she was 2.6, at the nursery she receives SALT once a week, music therapy once a week and is on the waiting list for OT, this was all before she had a dx, she now goes to SN and Main stream nursery and receives 1 hour 1:1 each morning at main stream which was arranged by her portage worker.

Since starting main stream she has started talking and will now play with her sister (also on the spectrum).

I havn't pushed for any help, this has just been given to us with out a fight, the only problem has been getting OT.

With DD1 (AS) we didn't get any help at all, we were refused portage and we had never herd of OT. (dd1 should have had OT).

Dd1 now shows little signs of AS other than her knowing every type of butterfly and dinosaur grin. I'm not sure if dd1 has improved or weather its the fact we have got used to her and we now know what upsets her.

lou031205 Thu 27-Aug-09 14:35:42

Hi, Ravenousbeast.

Firstly, I know you say "Without needing to discuss this I have realised that he has autistic traits. I know this & don't need to talk about why I think it." However, if you felt able to share some details, you might find that there are some very simple things you can start with while waiting for more formal help?

1. For us, starting preschool was the start of realising DD1's issues, so you are ahead of the game, well done. In any event, the area you live determines the way you get help. In my area, there is an officer who comes to observe in preschool. For DD1, that led to full 1:1 support, which will continue until she leaves. If your DS doesn't start nursery till Jan, then a trip to your GP is your first step.

You really want to go a step further than being able to ignore the negatives, to minimising the negatives. How to do that will depend on what they are. Perhaps a thorough reading of the SN section may help. It did me.

3. I second whoever has suggested homestart - it is an absolute Godsend. Rosie comes to us tomorrow afternoon & boy am I ready.

masonicpixiesreadthedailymail Thu 27-Aug-09 15:27:48

Hi Ravenousbeast

yeah ditto advice for Homestart and contacting social services. Also do you have portage service where you live or maybe a LEA specialist support home teaching service for pre schoolers? I think you can self refer. I'd advise getting yr gp to refer you to child development centre also. They often have groups / sessions which they use in making diagnosis. Also rate kids

My dh and I react quite differently also, even though we do pull in the same direction - if that makes any sense. Rather like yr dp he is a more 'we're ok' sort of fella. I'm v practical and looking out for all the help and support we can get

Best of luck with everything - I hope the referrals yield something. Oh and sure you will have a great family life - maybe a tad different to what you envisioned but still peaks and troughs and all that

TotalChaos Thu 27-Aug-09 19:07:21

sorry you are going through a stressful time.

in addition to the other great advice about benefits, homestart, portage etc, I would also suggest at some point you might want to consider contacting an organisation called bibic who at the moment seem to have funds to offer assessment and advice for kids with SN at minimal cost (50 pounds admin fee). www.bibic.org.uk. Don't be put off by the title - it's for all sorts of SN and Sen. quite a few mumsnetters on this board have used bibic and been very pleased.

agree with claw about looking for parent support groups. you might also find useful info on www.nas.org.uk about autism specific support groups.

phlebas Thu 27-Aug-09 19:20:32

also you don't need a diagnosis to go to BIBIC (they said that last year 36% of their children were undiagnosed).

Ravenousbeast Thu 03-Sep-09 09:31:11

Hi and thanks again for all responses.

I'm wondering how I can deal with the horrible,horrible guilt I am feeling. I feel that I must have done something to cause this to happen to my two boys. I don't want sympathy-I want to know how I can manage to handle these feeling along with the loss, fear and worry that I'm feeling. I know that this is a silly post but I'm sitting at home and I can't even think who to phone in real life because I actually feel ashamed to admit that both children have problems. Ashamed of myself as a parent.

5inthebed Thu 03-Sep-09 09:39:13

Don't be ashamed! You've done nothing wrong to "make" your DC they way they are.

I often have pangs of guilt about DS2. I often sit and read things that I shouldn't. I once went through a whole week blaming myself for him having autism, as I'd read that ASD can be caused by the umbilical cord being cut straight after virth, and because I'd had a C-Section, it would have been the case. However, they aren't as often as when he was first dx.

If you sit there and blame yourself, or look for reasons why, you'll drive yourself mad.

Where in the UK do you live?

Ravenousbeast Thu 03-Sep-09 09:45:44

Hi 5inabed

I'm so upset I don't know what to do with myself at times.

Thanks for answering - I live in Brighton

5inthebed Thu 03-Sep-09 09:55:14

You poor thing. What you're feeling though is incredibly normal. We have all been there, some of us are currently there. It can be very tiring, especially if nobody will listen to you sad

I live in the NE, so I don't know of any groups or anything down in Brighton I'm afraid.

I'm poping out, but will be back later. Hopefully someone else might be able to help with the groups.

donkeyderby Thu 03-Sep-09 23:08:21

Hi Ravenous, I'm in Brighton too but with a much older SLD child. You are not the only one out there, be reassured. I felt like I was in a black hole for several years but I'm pretty much alright now! Time has been a healer.

Have you been in touch with Amaze (information organisation for parents of sn children? They have a helpline open most mornings (you usually have to leave a message and they will get back), and a good website - google amaze brighton.

Are you in contact with Seaside View child development centre up at the General? Multi-agency centre - health, social services (for what it's worth), etc.

Sweetpeas - Under 5's drop-in SN group at Morley St on Fridays. Amaze can give you contact details I'm sure. Parents there with ASD kids and other disabilities. Parents can be your biggest resource.

Portage operates in Brighton too.

There's more. I'm not sure about giving away contact details on this forum, but I'd be happy to meet up if you would like to.

iheartdusty Thu 03-Sep-09 23:18:25

ravenous - here is the Amaze website

Amaze

please do have a look and get in touch, they can help with so many things.

Davros Fri 04-Sep-09 13:01:48

Check the NAS website for local branch. I wonder if Amaze is the equivalent of our Family Information Worker service? It not, that could be worth looking for too although they may be called something else.

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