Feeling so low

Hi Angryswan

Yes I know what you are talking about. My parents waver between accepting there are 'behaviour traits' and hinting at tougher discipline. I mentioned to them today that I thought they sometimes were grieving for the grandson they 'thought' they had and it struck a cord.

O has fantastic qualities as a person and I do believe being dx'd would help him understand his differences better. Because he is back in school now his behaviour is becoming more and more problematic. I also found out CAMHS had not even started to process him onto their waiting list, so the school nurse stepped in and has made a direct referral to the ASD team..she can see where we are coming from and is working hard to help us get more answers.

My partner is great in many many ways but because of his own traits he can be totally unaware of how his behaviour winds is son up... it's amusing as much as it is annoying..because the things he does would wind him up if he was on the recieving end..yet he happily bimbles in and sets my son off by making him jump or getting in to daft arguments over seemingly very trivial issues. They are like two peas in a pod..my partner took our sons to school the other day (a rare thing) and he commented on how awkward he felt..then he looked down and saw our son standing in exactly the same way, looking as awkward as himself with the same expression of bewilderment on his face. No matter how many times I explain to my partner how hard school is for O until that moment I don't think he could appreciate it.

It did help me feel less alone and I really feel for you that you have these battles with your ex and have to deal with the fallout of it afterwards. I hope you have some resolution to your sons dx soon.

Take care

Oatie.

I have the same trouble with the ex, and his parents. They seem to be having trouble accepting that our DS has social communication/interaction difficulties. The ex is reluctant to listen to my pleas for a regular visitation routine, and his parenting style does not include any methods one would use for a child with ASD. This often causes DS to get very distressed and comes home from a visit in a terrible state.

My Mother at first said there was nothing wrong, until she accompanied us to the park and saw DS in action! Then, a friend of mine had her eyes opened, also at the park... I'm starting to think it would be better to take DS there when it's deserted! 

The way people stare always gets to me. My friend got really cross about it and felt like saying something to them. I think it's simply a lack of understanding, and a little bit of fear, that makes them stare. Oh, and terribly insensitive and rude!

I am fed up with having to explain, over and over again, why DS is different. Anyone who knows him well, knows his struggles. It's also so frustrating to still be waiting for a clear diagnosis, they just can't tick box number 6, and without it they want to do more tests, perhaps even a blood test. So, in the meantime, I feel like I'm in limbo, not really sure what is wrong, even though it seems pretty clear it's Aspergers Syndrome... I doubt DS would get that diagnosis anyway, since they are pulling away from it and choosing to use the term ASD. 

I think it is wonderful that your partner is on your side. It is probably a massive relief for you. Your parents probably need time to accept things, it is very hard for some people to accept. Try not to let their opinions get to you because you know your child better than anybody.

God that made me laugh! Thanks WB. I really have a very enduring mental image of you waving your bits at the ceiling.

The work sounds interesting and I think the ladies will be very interested in your life and perspective. I tell you what you don't half give me value for money!

You really cheered me up thanks.

Just to let you know CAMHS came yesterday and are arranging an initial assessment for O. If ASD is suspected after that he will be referred to the ASD team. If it is thought to be a separation anxiety problem alone then they will help us help him cope with his stressies.

We are apprehensive but relieved. O spends a lot of time in hospital due to his other health issues so we have always held back, worried he could become over 'medicalised' but I was reassured after yesterdays meeting. They did actually say that they didn't think we were doing anything wrong with our parenting approach..I can't tell you what a relief it was to hear that.

Oatie

Aw thanks..I got accused of being over anxious when people wouldn't listen..then I pointed out I had twins and was only raising issues with one of them...you could see them stop and think at that one..but then swiftly move on.

I miss judged something again with my son today..I knew he was getting close to losing it but I decided not to make him come in from playing outside with his brother and their friend...it all went pear shaped and O got sent home, head down and miserable from our neighbours because he had lashed out.

Without diagnosis and wit O being bright it's hard to know when to say to other parents..look he needs to come in now because...he may implode??? I mean how do I explain it? Now I feel I let him down and he's been seen in a bad light by his peer and neighbour.

I have some strategies.. like when I need everyone in the village to know something I tell the busy body..so they will tell everyone else and save me the bother. But as O isn't dx yet ...and we could be wrong about what's going on...I am hesitant to commit to saying anything yet.

So we continue to bimble along and wait...my partner saw a CPN today who sounded great. She has said there is no need to see her again as she too feels that my partner is showing ASD traits. She is going to push for assessment and get back to him in a couple of weeks with some guidance as to what's happening after she's spoken to a consultant.

So not all bad today but I feel I didn't protect O from a hurtful situation. He now thinks he can never play with this friend again..hopefully he will see him knocking at our door again soon.

..feels like a knife through your heart when these things happen..I am reliably informed by a mum with a 15yr old boy with ASD that it is water off a duck's back after a while.

Oatie

Oh, huge hugs to you.  I know that feeling so well ... it's heartbreaking when folk say or even hint that it's all our imagination ... I was even accused of attention seeking once (or twice!)

I found my confidence was knocked as a mother ... but I kept telling myself that I was a good mother and I knew my boys better than anyone ... I didn't often believe it at first but I'm beginning to now!

Thinking of you,

GG x

I know that feeling oh so well. Its so frustating I get that feeling everyday. Mothers guilty I would not wish it on anybody.

x