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Feeling overwhelmed and emotional

NAS82765

My son is 5 years old and I have 'known' that he is autistic since he was ~2 years old (I have previously worked with autistic children and believe I am too, undiagnosed). I approached the health visitor about getting an assessment earlier this year and when looking at his development/skills etc she agreed to refer him. His school have now also raised their 'concerns' and are looking at putting him on the SEN register and organising an EHCP. I emailed the health visitor again last night to ask about our last appointment in more detail and she said 'developmental delay in all areas except communication' (he has problems with his speech so feel that is inaccurate but besides the point for here). 

None of this came as a surprise but since hearing the school's concerns and seeing the words there in black and white 'developmental delay' I have felt so emotional and overwhelmed. I think to a degree I have almost 'ignored' on my part everything that is more difficult, the extra care, the extra needs, compared to my older children as he is my 'baby' and I have mothered him, IYSWIM. I haven't accepted that actually my mothering isn't enough, he needs more help, support and assistance. I am worried now what school will be like for him, what life will be like. Now he is 'out in the world' I feel less in control and unable to protect him as I could before.

Sorry for the rant, hoping someone may feel, or have felt the same.

  • in reply to Kate Kestrel

    Thank you so much for your reply. It really helps to hear from someone who has been through it all and out the other side (with the school years). 

  • Hi - I think what you’re feeling is entirely normal. It’s a significant adjustment to make when we go from feeling that our child might have extra needs to actually facing the reality of engaging with school Sencos and doctors etc and getting support from others for our child’s needs. 
    I have two son’s in their early twenties who are autistic - my youngest was diagnosed at 10 years old and my eldest  has just had his assessment. I’m also part way through the assessment process. 
    When my youngest started school (he didn’t go to nursery) it rapidly became apparent that he struggled massively with every aspect of school. He developed Selective Mutism on starting school too. It was a massively stressful time. We had to really battle to get our son support - and that struggle went on for years. So I relate to what you say about feeling overwhelmed. 

    If I could go back and advise my younger self I would say: keep your relationship with the school as positive as you can. Be firm about what you want from the school - but always be polite because when that relationship breaks down it’s hugely stressful. My son’s school and the LA let my son down again and again and I felt I had to fight for my son - and because it became a fight the school were very defensive. It was awful. So be firm - but try to keep them on side. Try and get an EHCP for your child if you can - it’s the best protection you can get and helps so much to get the school to provide the help your child needs. 

    School can be enormously stressful for autistic children. Always listen to you child. If it’s really damaging their mental health consider other options. I kept tak8ng my son into school because they kept telling me he would be ok - but he wasn’t ok. It was damaging his mental health to be there. Follow your instincts. Get all the support you can - for your child and for you too. 

    My son’s are adults now - we all survived! I’m so proud of them. You will have challenges but you’ll get through them - and our children are worth it aren’t they? We went through so many struggles but we have a strong bond and a loving family - and I feel very lucky that my children are the wonderful people they are. I wouldn’t change anything about them - what I WOULD change is making schools more autism friendly. 

    good luck with it all x

  • Hi.   I am feeling similarly overwhelmed.   My daughter is 15 and has recently been diagnosed ASD and ADHD.  Like you, we have ‘known’ for years but it was never an issue before now but puberty has caused things to worsen so we had to get an official diagnosis. 
    I just feel like I’m in a maze, feeling my way and am a bit lost.   Not sure of the ‘right’ things to do.   Not even sure why I’m working here - just helps to know I’m not the only one.    And through her process and diagnosis I have discovered that I very likely have ADHD too .