A few questions re DLA renewal forms....

[Trigglesx]

They've changed them slightly and, as always, nothing seems straight forward.

On most of the sections, they ask "when did this begin"... we've generally put around 2-3 years, but indicated that essentially it's been since birth, as we began noticing when he was 2-3 years that he wasn't developing/behaving/progressing as other children the same age were. Does that make sense at all?

Also, regarding difficulty speaking, his most recent session from SALT indicated he was making good progress and is basically going to be discharged from SALT. He tests very well in quiet undistracted environment, but is often unable to USE these skills, so the report is a bit misleading. And when he gets anxious, upset, overloaded, his speech and language skills can go right out the window - he either speaks so quickly he quite literally cannot be understood (and he cannot seem to slow it down) or he mixes up words or he reaches a point where he just cannot vocalise what he means at all as he is too distressed.

I've spoken to his teacher and she agrees that while the report is accurate, he does struggle with this when anxious as well as his level of understanding. So, do I just include the SALT report and then put this type of explanation in "further information"??

And the whole "hobbies, interests, etc" part always makes my head go around. DS2 doesn't do ANYTHING outside of the home by the way of classes for hobbies/interests - because he is simply not able to cope with the extra sensory input of the other children in the class and cannot be safe - he'd run off in a shot. He also struggles with focus in a class as well. So what exactly are we supposed to put? It'd be brilliant if he could do stuff like that, but it's just not possible because he'd literally need a carer one on one with him for the entire time, and where is THAT available?? Just don't know what to put there. I struggled with this last time too, and the cerebra guide didn't help much in that regard. Perhaps because it's toward the end of the form and my brain was practically fried by that time.

As silly as it might sound, I would love for DS2 (and DS3 for that matter) to be able to go to Sunday School/church, but it's just not possible. I cannot leave him with the class, due to his SNs, and I can't take him into church for the same reasons. So much for religious activities. Is it just me that I am sad that he cannot have the same exposure to church/children's church activities that I had as a child because he is not able to access them safely and without causing huge disruption? He is essentially not able to participate in religion because of his SNs.

Or perhaps I'm just maudlin a bit today. DLA forms tend to do that to me.

Hi

No you are not on your own, I too struggle because DS 11 Aspergers cannot access church or Sunday school due to his sensory problems. We tried for about five years to fit in to church and church did next to nothing to try and make things easier/better for us. Before DS came along DH and I were fully involved. DH was the church treasurer, we both did Sunday School and ran the 11-16 youth programme. Now all of that is gone and our lives feel diminished. Apparently 75% of families who have a child with special needs ends up stopping attending church. DS could not cope with the music so we tried just taking him along to Sunday School, but that only worked for a few months as the Sunday school leaders chose to introduce music into the sessions and couldn't see what our/DS problem was. The subtext to this was that they thought we were inadequate parents as no one elses children had any issues.

I am still in touch with a lot of my church friends,but others have totally blanked me if I have seen them about. I suppose they see me as backslidden, so can't associate with me. It doesn't really help!

Triggles as far as the DLA form goes the CAB advisor I had the first time I filled it in for Ds told me to write about what I would like him to do in an ideal world even if there was no hope of that being actually possible. IIRC Sunday school was one of the things I put in.

We struggled with Sunday school in his pre-diagnosis days and I must say church was pretty accepting. They already had an older boy with much severer issues than Ds.
Ds has now decided that he is an 'agnostic atheist' but at 16 I can live with that. However the combination of his needs and my own disabilities mean I often miss church. Dd is at 13 and NT old enough to go on her own which she does.

I wrote down the things that ds would like to do and what he would need in order to be able to do that. I also added examples of what had happened when he'd attempted to take part in clubs/activities without the extra support.

So something like:

Ds would go to Sunday school. In order to do this he would need 1:1 help to [help him focus/help him understand/help him be understood by others].
(Detail the help he would need)

Without this help, XYZ would happen. (detail any distress, potential injury or disruption etc)

Other children of ds' age are able to attend Sunday school without any extra support.

Thanks. That makes sense. I will get back to work on it tomorrow. Tonight I'm giving my brain the night off.

Yeah, Beavers, would need 1:1 support.

Swimming lessons, essential life skill, would need individual lessons.

Gym club, for healthy exercise, 1:1 support needed, etc.

Thanks, EllenJane. Think they'll recognise the pattern?

Umm, possibly