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Chat for ASD families

I totally agree with @13lizanne, well done you for stepping in for both of them. It takes a very special person to look after a little one with special needs, and an amazing person to look after a baby as well! They will be truly grateful when they are older, and all of your lives will be so much richer as a result. I look back to when my gran moved in with us after grandad died and I cherish those years. A huge pat on the back to you!
 
To me ir is really important that M grows up differently from her mum as her mum wasnt diagnosed with Aspergers until she was 13 and right from the ti.e she was 8 it was a roller coaster nightmare and unfortunately its still continueing into her adult life which is really sad, you.think she is starting to get it and then she goes off the rails again. Its very sad and very worrying and while I am there to support her from a distance I cant give her as much support as I would like as it is just too draining trying to deal with some of her issues but in saying that I will never give up on her and I will always be there for her if she needs me and the most important thing is she knows that.
 
@4ratbags I know exactly what you mean, my younger brother wasn't diagnosed with Aspergers until he was 26 and at uni. By contrast my son was 6 and although there are some similarities they are chalk and cheese! Both my brothers and I were bullied at secondary school and he had some truly horrific things done to him, but it gave us a determination to overcome adversity and an inherently positive outlook. Once you can live through that you can live through anything! By contrast my son suffers from depression and anxiety as part of his Aspergers and that has given him a very negative outlook. Once he finds something he can sink his teeth into he's like a runaway train! For example his drama group, he finds creativity very inspiring and a couple of years ago he was rewarded by being chosen to play the King of Milan in Shakespeare's The Tempest!
 
Did anyone else watch the bbc 1 drama The A Word. The birthday party and football scene was like deja vu, that was a scene from my son's life.
I was a bit surprised how quickly the boy was diagnosed, as I'm sure everyone here had to jump through hoops even to get reffered on.
It is on bbc 1 on Tuesday 9pm
 
Shar67 said:
Did anyone else watch the bbc 1 drama The A Word. The birthday party and football scene was like deja vu, that was a scene from my son's life.
I was a bit surprised how quickly the boy was diagnosed, as I'm sure everyone here had to jump through hoops even to get reffered on.
It is on bbc 1 on Tuesday 9pm
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I saw it, some parts were spot on but not others. My son was lucky, his reception teacher was the school SENCO and she referred him immediately. Even then we had to go through months of tests before getting his diagnosis. All in all it was quite enjoyable, some things were very familiar. I particularly enjoyed Christopher Eccleston as the grandad, he reminded me of my dad who displayed some ASD traits. He could be quite insensitive at times too! Even though my son had very few birthday parties his reaction was very similar to the little lad's, most of the time he would slink away and hide in his room!
 
@13lizanne its now 6ratbags, 4 children and 2 grand daughters :D
Everything is going fine and we now have M and little A sharing a room, whoopie I ahve my bed back, well kind of anyway. Sometimes M will sleep through the night (rarely but sometimes) other nights I have to go and lie with her in her bed and others I have just spent the whole night in her bed but I know it will take time. We have just applied for a Unsupported Childs Benefit for A to help with buying her clothes ect and we just found out we should have been getting the same benefit for M for the last 3 years but oh well its more important thats shes been safely with us for those 3 years. I have been trying to get back on the forum a bit more. How have you and your family.been, I hope you are all keeping well.
 
4ratbags said:
@13lizanne its now 6ratbags, 4 children and 2 grand daughters :D
Everything is going fine and we now have M and little A sharing a room, whoopie I ahve my bed back, well kind of anyway. Sometimes M will sleep through the night (rarely but sometimes) other nights I have to go and lie with her in her bed and others I have just spent the whole night in her bed but I know it will take time. We have just applied for a Unsupported Childs Benefit for A to help with buying her clothes ect and we just found out we should have been getting the same benefit for M for the last 3 years but oh well its more important thats shes been safely with us for those 3 years. I have been trying to get back on the forum a bit more. How have you and your family.been, I hope you are all keeping well.
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Bed sharing can be draining.. hope the money comes through... one less thing to worry about... we found/find the process of applying for things can be as stressful as not having the thing you're applying for(!). Sounds like you're going to be extra loaded with all your RatBags. Good to see you on the forum and understand if you have less time for postings. Wish you all well. Hj
 
The time difference means I just saw your post @4ratbags. I second what @hankjam said about the money, we were the same D was almost 4 before we found out about the help we should have been receiving. Hubby and I made sure other local ASD families got the benefits they were entitled to right from the start. Glad things seem to be working out well for you, sending a huge hug and kiss to the two littlest ratbags and deep respect to you and hubby @Galja had a good day yesterday, hope today is good too Galja
 
4ratbags said:
I know what you mean @hankjam Im really bad at procrastinating when it comes to applying for anything for the kids. It was unfortunately my hubbys first experience of it and he was so ****ed off by the time he left.
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Lol I can identify with that, it was a couple of years after diagnosis that I found out I could get Disability Living Allowance for A. I'm now an expert at filling in forms, I had to reapply for A when he turned 18, I helped my older brother apply for Employment and Support Allowance and then represented him when it went to appeal, and just recently I helped my younger brother apply for Employment and Support Allowance too! I'm sick of the sight of DSS forms now :)
 
To follow on from @Diamum5972 s post - I too am fed up with forms, and hospitals, and ruddy " ASD professionals" When you have to explain, yet again, something so basic that most empathetic/intelligent non-ASD professionals would instinctively understand. When we started in 1990-92 to try to understand our special son and how best to help him we had to go to the Internet and to the information coming from America but SURELY in 2016 people who claim to be trained in working with ASD should realise that - no, you can't just "make" a child "do what they are told to" aaaaaargh!!!!!!! Right, that's better, rant now over.
 
We do have some very good people here @Galja I was venting because of two ignorant health care people who thought that they knew it all when dealing with one of our support group families and upset the parents of a child with a severe ASD disorder because of their attitude. My own son has a team of wonderful people involved in his care. Autism Scotland ROCKS! .p.s I think you meant Great Britain, England and Scotland are seperate countries
 
Good grief @Galja I did not know that they were brothers. Two huge talents put to good and questionable uses. Apologies over the UK remark I should have realised that you would know the difference :) That must be very difficult for you and your son to be unsupported - does your son have verbal communication? My boy is non-verbal and couldn't exist without 24 hr support
 
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