Published on 12, July, 2020
Hi all
My name is Sarah. I have a beautiful daughter who has gone through some extremely hard times during the past 5 years. Three months ago she was diagnosed with ASD at 15 years old. She was misdiagnosed 5 years ago by CAMHS after years of trying to get assessed. I feel very angry that the past 5 years could have been avoided or have at least not been as awful if she had had the right diagnosis and help and support back then. She is depressed, highly anxious, has self-harmed and recently spent 3 months in a high dependancy mental health unit (300 miles away from home) where she was finally diagnosed! As those of you in a similar situation know, we have good days and bad days and absolutely terrible days. The time that my daughter was in hospital was the worse time of my life and I almost had a breakdown with the stress and worry of it all. She is back home now and has tried to go back to school, however, she just found it too difficult and I will not, under any circumstances, let her get that ill again so one of us is going to give up work so she can be schooled online for her final year. Very big decision but it's too late to get her a Statement of Needs now which would have greatly helped 5 years ago and opened up so many doors for her. Her school have been OK but unless you have personal experience, you have no idea how the tiniest thing can make all the difference to her feeling safe and less anxious whilst there.
I joined this site as I haven't yet spoken to other parents who are going through similar situations and I think it would help to make friends and support each other so we don't feel like the only person in the world going through these hard times.
I look forward to making new friends!
Hi MB,
I wouldn't worry too much about the 'experts' - until she feels happier and more confident in herself she will probably struggle with friends - but as long as you help her in these early stages she will find her way. My daughter attended some sessions at Camhs for teenagers with autism - until the money dried up and they ended! I have found there are groups for teens in our area ,which we are hoping to access over the summer. My daughter has two friends from primary who are really nice girls and accept my daughter for who she is - they meet every month for a short time (couple of hours like going to the cinema, McD's). I must admit the rest of the time I 'fill the gaps' with swimming, cinema, walks, going clothes shopping, cooking). At school my daughter loves certain subjects and is good at them - other less able kids recognise that and ask for her help - it raises my daughter's self esteem greatly. She has a 1 to 1 TA who is brilliant and 'fills in the gaps' at school - my daughter feels more comfortable with older people and I just accept that as she gets older she will learn to integrate better. She did have training (in primary) how to take turns, listen and how to ask relevent questions of other children - this helped greatly. Party invites were few and far between though- it hurt me too!
Have you been given some ideas as to how to help your daughter with regards to understanding her feelings? We have a 'ten minute worry session' when things are getting tense and talk about strategies to help. Sometimes my daughter will interupt me and just want to talk and talk, others she can't .....so I have to wait 'til she is ready - patience is the key I think. Has your daughter any pets or could you consider a pet .......getting a dog is a big responsibility, but we got a small dog and she has been a great comfort/ice-breaker at times and given my daughter independence walking it.
Does your daughter have special interests in animals, cooking or being with younger children - could she get involved somehow and start to develop social skills with your help? Maybe you will need to do this as a family to begin with. We have tried loads of things over the years - pony riding was good but interaction with the other girls was difficult.
Do you know how you are going to educate your daughter ? We opted against special school that was offered for us because it was too big a step, so we have a tutor led on-line study course set up. Has an Education and Health Plan been mentioned to you? I'm worried that you are not getting the right support and help which is your daughter's right - contact IPSEA as they know their stuff.
I'm also really upset that your daughter was sent 300 miles away from you - NAS - this shouldn't be happening should it?!!!
Don't be afraid to try a few things - you won't get everything right first time but as long as you keep moving forward inch by inch it will motivate you to keep on. Find out what your daughter's strengths are, as she will have them, and don't worry too much about the future. Also , I have found talking to others absolutely essential as being a parent at home can be really isolating - you need to get out and have some fun too! X