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 I'm Vanessa. My daughter always seemed different or misbehaved. I found it frustrating to deal with the doctors and everyone else saying it was me just being a worry wart mother. They said she was just being a kid and that it ran in the family on her dad's side to misbehave. My older daughter was completely opposite of her. Stephanie my oldest thrived in school and obeyed me. Stacie hated school and disobeyed my every word with a smile. She was the baby and daddy's little girl so she got away with murder. I didn't understand the differences between them when i raised them both the same. After 11 years of life and its ups and downs i was divorced and in a new relationship and Stacie was no longer daddy's little girl because he decided to go downhill with an addiction causing him to forget Stacie she started puberty and became depressed which spiraled into bad times. After an accidental suicide attempt....she claims she doesn't know how it all happened....she was hospitalized and diagnosed with psychosis, bi-polar, anxiety and OCD. Initially it was schizophrenia due to intrusive thoughts and that she didn't remember the incident as well as her rapid mood changes. Later it came to me the methods used on her little brother who regressed at 2 years old seemed to work with Stacie as well. However it took a bit longer to realize she was possibly autistic. After making her IEP at school aware and testing that was confirmed and it was shocking. Yet not. I always knew something was different but everyone said she was fine. I didn't want to believe she was crazy and i searched for months to get the doctors to listen to me that something else was to blame. A positive ANA confirms she may have an autoimmune disorder. Stacie is the Stacie she always was but now it all makes more sense and regional center is our next step in this chapter of our lives. I wonder how much more bad will come. Will she always struggle now? Like she had always struggled....except now i know she needed help and i feel horrible about it all. Horrible i was not educated enough to realize she needed help. I just had no way to knowing when the doctors all said she was fine and didn't listen when i complained she was a handful....they didn't understand cuz all kids are and i couldn't explain it better without sounding crazy.