Am feeling isolated and worried - struggling to talk to anyone about poss ASD DD (4 yrs) - anyone else been in same situation?

[josben]

DH is in denial and is stressed out enough with work/money/life, my mum says nothing wrong, DD is lovely, I tried to share my worries with MIL today (ex teacher) but she did not seem to want to go into it,...

And I am scared to tell friends of the situation as i am worried that it will make DD stand out even more or be labelled, she doesn't really play with friends at school, her teacher says she is in world of her own.

I do know other mums who have children in DD's year but i think if i say anything i will regret it as this may stigmatise DD... She really struggles to socialise and can be aggressive but can also be very cuddly and tries to pick other children of her age, which they don't like, i feel so low about it all, ts so hard to know what to do,,,,

DD's teacher/SEN Co-Ord is in the process of puttign together an IEP for DD and she has asked SALT to refer her to paed (waiting for appt) as we are still waiting for Dr's paed referral appt.
I can talk to DD's teacher who has been brilliant....

Just wondered how much others talk about this sort of situation to other mums/family...?

TIA

Hi hang in there this is quite a lonely journey, my ds started this process at age 5/6 and I know how you feel. He has adhd and suspected asd.

To be honest, other parents who you don't know well might stare at you blankly and try and sympathize but not really understand. I feel you are better off discussing it with close friends who know you and dd and you feel you can be open with, without being judged. I highly recommend you try and go to a local coffee morning or support group with parents of kids with or suspected asd, you will really get great support. We have a local group ADHD Support Harrow who run courses for parents with or without diagnosis that helps you to manage the journey!

Oh and two years after the Senco/Ed psych/statement etc my husband finally turned to me and said 'thanks for all your hard work, I didn't want to see it or believe it'

Good luck

Thank you for your post - i'm just feeling bit low tonight, i will have a look to see if there are any support groups in my area, thanks.

That's a hard one, josben.

I found it better to tell my family and friends that I had concerns, but it took me a long time to realise I should be concerned. A bit of denial from me. My friends could see things weren't right before I could, but the family took longer, more personally affected, they were also in denial.

By the time my DS started school he had a DX and had been in a special early years school, so I was a bit hardened to it and decided I'd prefer to be upfront and assertive about his ASD. I was proud of him after all, and wasn't going to apologise for him all the time. I thought if people knew about him, they may cut him, and me, a bit of slack. It actually worked really well. I just smiled widely and looked positive and people were generally really nice.

Unfortunately you can't make children be friends with your DD, but a sympathetic mum of a another child can make things easier. The school should be promoting friendships and tolerance also. Perhaps they could have a general class chat about helping children to enjoy playtime, without specifying your DD. Once you have some IEPs social skills needs to be a priority.

I can't really advise you to tell people. I said on a thread the other day, you need to feel comfortable about who you can talk to, and find out where you draw the line. For me, I told friends first, then family, then some parents at school. You may find other parents already suspect there may be issues causing your DD's behaviour, and it is a relief telling them that it's not your parenting skills. I don't know the parents at your DD's school, though. They may be lovely or they may not. Is there anyone you think may be sympathetic?

Hi I work with children with ASCs..... we use the c rather than a d as we feel condition is a more positive term than disorder!!! My feeling is that you will be ready to be open and positive with friends and family when you have got your head round it! Contact the NAS..... they are amazing and offer all sorts of support and advice and will help you get the best for your dd. please dont feel alone or ashamed! People may just not know how or what to say but just need a little time and knowledge! We are out and about with our students all the time and we carry a card. If a situation arises in a public place we hand anyone who shows concern one.....it has the basics of what we are about on and what are students need etc. May be an idea to get some info to give the people closest to you to read. Sure your dd is amazing and you are an amazing and patient mum x

Thank you for your posts, i have thought about printing some info from the autism website out and giving it to my DH and Mum but i think that my DH will get stressed out about it and my mum will look at the symptons and say that DD doesn't have this one or that one...

But i will print out some general info out and poss give it to them, sometimes i think it's easier not to discuss it ... but then i go to the park with DD and some friends and she is not included with the other girls playing, they get annoyed with her, and she is on her own and then i feel like i do tonight...

(((hugs))) josben.

Is your DD upset that she plays alone sometimes? My DS positively prefers being on his own some of the time, he finds everyone else a bit stressful.

Hi,

My DS has possible ASD and we are waiting for a referral.

I knew, deep down, he had problems and I found that once I told a fellow mum at a party for one of his school friends she became very sympathetic and has been ever since. She knows I work full time and often 'looks out' for my DS if she is in the school playground at the start of the day. Other parents have also been really sympathetic and have tried to be understanding.

As to discussing my worries...... I don't tend to discuss it with many people but I do lurk on here a lot and post in other forums too.

I have 2 girls with Autism, and the start is always the hardest.
I found wonderful support here but also a RL support group for girls especially with ASD. Girls are very different from boys and I found support groups hard.
What area are you in? How old is DD?
Try not let it take over your life and remember shes still the same little girl. My husband took forever to comes to terms with dd1, although second time round its been easier.

Hi, am in exact same boat as you awaiting DX for my DD (4 year old) My parents and FIL were cracking me up saying "there's nothing wrong with her" to be honest I just think they were trying to make me and them feel better. I just told them that this denial of theirs was not helping anyone. Still feel super depressed by it all but that isn't going to help DD so I have thrown myself in to the statementing process even before DX (there is a 3 month waiting list) and have chased up all appointments with community paed etc which is a real pain as no-one ever gets back to you. Also got on the case with DLA and looked into direct payments. Being on here has taught me so much so am looking into ABA tutoring and a lovely mumsnetter recommended I read a book called "let me hear your voice" by Catherine Maurice I am and it is really fantastic and has geared me into action and things I can do to help DD. Hang in there I know it is hard (massive understatement) myself and the DH are at constant loggerheads about DD but my advice keep busy and get all the help you can now early intervention is the key!!!

Thanks again for your posts -it really does help to hear other peoples experience.

Ellenjane DD doesn't mind playing alone, she never complains about it, i just feel sad that she doesn't get invites to parties/playdates .... I have watched her in the playground and she does push other children away and finds it hard to understand taking turns, its all very frustating.

Gigglebizzmizz, just wondered when was your DD referred and how long did it take for the paed appt to come through? Also what are direct payments to DLA for ? I feel so anxious for DD to get the help and support she needs, i would consider going private if we have to... I will look for that book thanks...

It's taken me ages to stop being so sad that my DS doesn't really 'do' friends. I just wanted him to be happy, and thought that meant doing all those things NT children do, like playdates, parties etc. But actually he is happy without them for a lot of the time.

Once I told a few sympathetic parents he did get some invites to parties, but some of them weren't fun for him. Discos with little structure were a nightmare. He enjoyed more parties with an activity, but I always went along to supervise him.

My DD was referred to paed by the SALT and she was seen back in November last year I have to admit at this time all I wanted to hear that there was nothing wrong with her and at the appt itself I played down lots of her symptoms for eg she is not toilet trained and has no perception of when she wants to go but I told Paed that this was improving greatly and wasn't a problem. Because of my downplay the paed said she would flag us up with the ed pyschologist but as we were not priority we would not be seen. I quickly realised that it was pointless ignoring all the symptoms they weren't going to go away so we telephoned the ed pysch office ourselves and told them everything (making things sound horrendous and that DD was spawn of the devil.... I Know I know this sounds harsh but it worked and we were given appt for assessment this was done end of March so as you can see waiting lists are an issue. Get on the phone to comm paed secretary ask have you definitely been referred when will appt be tell them you will take a cancellation if there are any and stress how urgent it is that you are seen. When you do get your appt take everything we have SALT, and OT on the go but to be honest all they seem to do is carry out assessment. DLA is disability living allowance and you will get some great advice on filling out the forms on here. Direct payments are when you get money for respite care or in our case we are going to hire an ABA tutor hopefully. There is so much to do haven't had a chance to think all this has even made me think that I might be a bit ASD myself ( I was always the noisy disruptive kid in class) I honestly think that every single child have some ASD symptoms but ours perhaps just have a few more but we are doing the very best for them. Chin up xxxx

Hi josben! We are also waiting for diagnosis of ASD for DD.
DD's father is the same. He is in total denial, I can't talk to him about the possibility of DD being on the spectrum. The only time he wants to talk about any of it is to debate on whether Autism/ADHD exist, which is not very supportive.
I was also worried about labelling. At the end of the day, a diagnosis is right for your DD and it shouldn't matter how it is percieved by others. It won't change her.
I can't suggest anything more than previous posters - local support groups and the NAS are a great place to start.

I find it difficult to talk to family - DH's family tends to lean towards "eternal optimist" and be saying "oh but he'll grow out of it right?" I can talk to DH to some extent. But I am hesitant to talk about it to most people in RL. Except a few friends that also have children with SNs. Although I probably scare them off as I keep it so bottled in generally that I tend to get very talkative when with someone that actually "gets" it. But any local support group should be quite helpful.