Been a busy last few days. More Xmas shopping, phone calls and meetings. It seems never ending. Spent nearly an hour ringing around places yesterday for information and support groups. My Health Visitor rang with a number for a local support group, but she got the number wrong so I've been trying to get hold of her to check the number. I rang the National Autistic Society number yesterday to be put on their mailing list and get a free Transporters DVD for Taylor but they aren't doing them at the moment, it was a limited offer. She said they will be doing it again soon and it will be posted on their website when it's back in force. Taylor's Speech Therapy lady rang with a number to ring to get in touch with the organisation to find out how far up the list he is and how soon he will get it but i haven't been able to get in touch with them either. My child benefit didn't get paid into my account on Tuesday so Tony had to ring them and see what was going on. They apologised and said it will be in within the next 5 days which doesn't help when bills need paying NOW!!! Luckily as always we found a way around it. We had a meeting at Nursery today with Taylor's Learning Support Liaison Worker about how he's progressing. She's happy with him and how he's coping with his IEP's and has set up an assessment meeting at Nursery on the 18th Jan 08 to go over a few things. She also mentioned setting up an appointment to go and look around a Special Needs School called Broadfield which we are familiar with through other family members and their kids. To be honest i personally didn't want Taylor to go to a S.N.School if we could help it (for selfish reasons i guess as part of me kind of felt things would still be 'normal' if he was at a mainstream school) but i must admit over the last few days i have started to question myself if it's the right decision sending him to a mainstream school. I know that school will have to make allowances for him in certain areas and yes he will have a support teacher with him but depending on how much support he needs depends on how the school will have to work around him. Whereas a S.N.School already have properly trained teachers (i know his support worker is properly trained but not necessarily in some of the areas he needs most help with) in place and have the right kind of facilities he needs, for example his potty training. He will always use his potty (not toilet yet) at home but WON'T under any circumstances use it at Nursery and they have suggested putting his potty training to one side at Nursery for the moment in time to focus on more urgent priorities like his social and interaction skills. They have already said that basically if it took the next 3/4yrs or longer to get him out of nappies/pull ups it doesn't matter, because of his Autism it's common and they have to work around it. She is going to ring us and let us know when we can go and have a peek and I've told Tony I'd like him to take the morning/afternoon/day off work to come with us and see what he thinks. I feel guilty sometimes when we have meetings and assessments as he can't always make them because of work, and although i understand he has to work it would be nice for him to be with us from time to time. He doesn't mind. It does upset him but as he's said my mum has more of a right to be with me at them than he does in a way as she is more involved than him. He is at work 5 days a week and mum is here with me coping with Taylor on a day to day basis and technically is more like an additional mum to him than a nan. Plus it's helping her seeing how different routines and strategies work with him so she can put them in place when he's at her house over the weekend. She is very involved is my mum and although i love my husband to bits I'd really be lost without her. I seriously don't think i would have been able to cope as well as i have over the years not just recently if mum hadn't have been as involved as she has been. She's not just my mum she's my best friend. We are very close.
I was talking to Tony earlier about S.N.School and Linda (TJ's Liaison worker) putting our names forward to the school for a view date and he said he'd rather he went to a mainstream school but it is worth going and looking and asking questions and keeping our options open. He also asked me if i wanted him to ring his sister as 2 of his nephew's have Autism and she was a support worker for one of them and followed him right through at a mainstream school in the early years. I said yes it would be a good idea to ring her and see if she'd come and give us some kind of idea how these things work and what kind of help is on offer. Unfortunately she isn't still doing it or else I'd have asked her if she'd have followed Taylor if possible. Plus on a selfish note like Tony said, if we tell her what's been going on she can spread the word for us as it's not always easy telling someone over the phone that your child has been diagnosed with ASD, as most of them feel sorry for you and as I've said before we DON'T want sympathy we WANT support!! She's said she'll call round tomorrow evening sometime which is handy for us as the kids are very rarely in on a Friday evening and it's 'OUR' night as both Taylor & Dana aren't here, so we try our best to spend as much time together as we can even if it's only curling up and watching a DVD together!! We ban the kids, well we try and all their m8s from the house on Friday's because of that reason, luckily for us they don't mind as their usually off doing their own things anyway!!
I am looking forward to tomorrow as apart from Tony's sister coming to see us, a lady from Holly House is also coming to help us fill out Taylor's DLA (Disability Living Allowance) forms, and as hard as it's going to be we have to make it sound really bad (to be honest it shouldn't be that hard) but the good thing is Mary (the lady who's coming) knows Taylor from H.House so that will make things easier for her helping us what to write. I will update tomorrow evening sometime or Saturday during the day. It depends how long it takes to fill the forms in and what time Tony's sister comes and how long she's here for. Take care and have a good weekend. xXx
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