New and considering HE, no idea what's best!

My daughter is still very young, 2yrs 7months, and was diagnosed with AS in March. She has a speech and language therapist, psychologist and Inclusion worker and we're still desperately awaiting her OT appointment. Recently we've been discussing pre-schools and primary schools and i sadly feel there is nothing here that would suit her needs. They said our main option is to send her to a mainstream school and "hopefully she'll get some extra support and be able to 'cope' there" which really shocked me
She's a bright child who loves to be engaged with learning/problem solving activities but strictly on her terms. She has a lot of trouble with language/communication, both speaking and understanding although i have started using PECS which is going well despite having no professional support. Socially, she has a really hard time. It takes a long time for her to build enough trust to give someone eye contact or to let them near her, once she does, you're in for life! She doesn't cope at toddler groups and doesn't want to interact with other children, if they are at an activity that she wants to do, she'll wait until they've gone before she goes over. She doesn't like busy places/lots of people. She has many sensory issues including being very sensitive to sounds and movement of others.
I've looked into specialist schools in the UK and have found a couple but nobody's even spoken about getting a statement done. I'm certain that mainstream will not be a suitable or safe place for her and if she can't go to a specialist school, i'm seriously considering home educating.
I do have concerns over doing this, especially that she won't have time away from me. We have a very close relationship (her dad couldn't cope and moved out in March, before which he did very little with her) and to be honest, we've never been apart. I love her dearly and just want to do what's right for her, the last thing i want to do is hold her back. How do you manage to get the right balance so that your child still works with other people and how on earth do you know what/how to teach them? I used to work in a special needs school where most of the children had severe learning difficulties and my little girl is so very different to them.
Sorry to ramble on and that you for taking the time to read this. Any information, advice or experiences would be gratefully received.
Emma

This is an exceptionally young age to be diagnosed with AS. No signs or symptoms of AS manifested in my son at this age apart from occasionally arranging small objects in lines that I didn't think was out of the ordinary at the time. The first signs and symptoms of AS only began to surface at around 3 1/2 years old whilst in nursery class. It was clear to me that he did not have conventional autism but I had no idea that he had AS or any other long term condition.



It should damn well come as a shock.



These are all signs that your daughter is unsuited to life in mainstream school even with SEN support services. My son didn't appear to have serious sensory issues when he started school but I have seen the way that children with notable sensory issues before starting school have been totally wrecked in a school environment.



I don't think this is much of a worry until the child reaches 6 or 7 years old. Children don't start school in many countries until they are 6 or 7 and that the UK has an unusually young starting age.



This should tell you that HE is the best. Remember that your daughter can always start school at a later age if she wants to or if you find a school that suits her needs and requirements.

You should be very happy. The fact that you have got a diagnosis and realise that the state provision for children like your daughter is non-existant, will no doubt help you daughter no end. She will not be damaged by stuggling to cope in a mainstream school while you endlessly fight with schools and LEA as so many others are. You can give her the best education and knowing her as you do you will know if something isn't working and change it straight away.

My daughter has benifited greatly from being home educated. The simple fact that she always has me with her has given her the courage to try new social situations. At 1st we went to groups and she just clung to me. I let her sit on my knee and carried her around while i chatted to other parents and kids. We kept on going and gradually she started to speak to people, then move further away from me. When she made a friend and they began to look out for one another I was over the moon, It was something I wasn't sure would ever happen. We are now 2 yrs in to her HE and she has a small group of good friends. (Including 2 other AS girls). She was really pleased with herself when she realise she had 8 friends she wanted to invite to her birthday.

Some activities (days out) are emotionally difficult for her but the fact we can take a few days out and do nothing afterwards makes them doable. She is coping better and better with new things and I have no doubts that we have made the right decision by HEdding.

Hi,

My son is 5 and he was only 18 months old when I first suspected AS (my brother has AS and I have always worked with adults with autism so I thought perhaps I was just looking for things that weren't there). He went to nursery at 3.5 and loved it. It was a specialist nursery that has 50% of it's children there under referral due to special needs (my son was not referred there). They really understood my DS even though I had deliberately said nothing about my concerns as I felt that if they came to me with concerns that I had not planted in their minds it would confirm for me that something was amiss. Well after about 6 months they asked if it would be OK to refer him to an EP we went through the process and were told that they would do nothing at present due to his age and we should go back when he was 7. Until then we were on our own!

We had another referral from our GP earlier this year and are back going through the process again. This time everyone he has seen so far has said they are sure he has AS but we may not get a diagnosis from the psychologist due to his age and may have to go back when he is 7. Having said that it's all taking so long and we have been told it could be another 18 months yet that by the time we do see the psychologist he probably will be 7.

Well my son started school Sept 09 and for the first week there were only 10 kids in his class as they stagger start dates and he was OK (not great but OK). Once the rest of his class started his was so very miserable it broke our hearts. He was hiding under a bench at play times because the playground was scary. Everything was too noisy for him. The dinner hall was hell. One day he had a supply teacher and that was a real nightmare for him etc etc etc.

We had already looked into Home Ed and over half term decided we would do it. It was terrifying yet liberating and we haven't looked back. For the first few months if anyone even mentioned school my DS would burst into tears. Like your DH my DS clings to us and sat on my lap for the first few home ed groups but eventually made it on to his own chair. Last week he got up, walked around the table and started a conversation with one of the other children, it was all I could do not to cry! I firmly believe it's having me around as a safety net that has given him this confidence. One of the many things I love about HE is that other parents at the group we attend have all made an effort to get to know our DS and what makes him tick. If we all go to someones house he can get a bit overwhelmed so they make sure there is a room where he can go and sit with just me for a while before going back to join in an activity and if it's all too much and we have to leave early everyone is fine with it. Also because our DS is high functioning he is able to sit with the older kids and talk on a level that's good for him but when we go to the park he can run around with kids his own age.

Our DS has very little time away from us, he will spend time with a grandparent during the day but bedtime is a nightmare. We simply cannot go out when it's his bedtime as he goes into total meltdown that a baby sitter will not get the routine right. We have discussed this with his grandmother and next week she is going to come and watch his bedtime routine. She will do this a few times before she puts him to bed with us there. Once she has done that a few times we will have a go at going out and leaving them to it and see how it goes. Fingers crossed that will work.

Sorry it's such a long response, you are just where we were a year ago. I'm not going to tell you to HE is at needs to be your decision, but that's our story and if we had our time again I wouldn't change a thing. Although he hated school he had an idea of what school would be like and was really looking forward to going so I think if he hadn't gone he would still have that and wouldn't necessarily be happy at home. As it is if anyone suggests going to school he says nooooooooooooooo.

Good luck with your decision x