She Is My Inspiration – Miriam’s Story – Mental Health Awareness
Hi all, and welcome back to my blog. Today is day 18 of my mental health awareness month, if you missed yesterdays interview with Brona, get that here. Today I am joined by Miriam. Please show your support, like, comment, and share this post.
Hi Miriam, thank you so much for taking part in my series, Please tell me a bit about yourself and your child:
My name is Miriam and I am from Glasgow. I have nine year old twins, Isaac and Naomi. Both of them have a diagnosis of autism. They are my miracle children born as a result of IVF after ten years struggling with infertility. Naomi attends mainstream school and is doing well.
What Mental Health Condition does your daughter have?
As well as having an autism spectrum condition which was diagnosed the week before my daughter’s 5th birthday, she also has anxiety, selective mutism and an eating disorder, all of which are classed as mental health conditions.
When did I first notice she has a mental health condition?
When Naomi was a toddler she hated being away from me. I thought it was typical toddler behaviour but when she never seemed to outgrow it I thought she was socially shy or maybe had separation anxiety. It took over three months before she would let go of me and go into the room with a worker. Once inside she became silent and never spoke again until back home with me. The first I realised this could be anything more than extreme shyness was at four when she was diagnosed by a speech and language therapist as having selective mutism which is an extreme form of anxiety that prevents someone from being able to speak in certain situations.
When she started school she began having serious panic attacks. She has never been a good eater and when she was first referred to CAMHS at five and her height and weight were taken we were told she was severely underweight and looked ill. There had been so much going on with her and her twin brother (who has severe complex needs both medically and developmentally) that I had not stopped to think just how little my daughter was eating. She refused to eat and drink at all when away from me and now at school all day this was becoming a huge issue. Now in year four at school she has finally been diagnosed with anxiety and an eating disorder.
How did this make you feel?
I felt a failure. I felt I had let her down. It didn’t help that CAMHS were keen to blame my parenting too! As a parent it’s utterly heartbreaking when your children struggle and you have no idea how to help them. I also felt so out of my depth. If she had cut herself I could put a plaster on, if she had tooth ache I could take her to the dentist, if she had a headache I could give her calpol but what on earth do you do as a parent when your child has severe anxiety, is socially mute and refuses to eat? There’s nothing like that in the parenting books or emails is there? I was scared and I still am some days!
This sounds like it has been really difficult. It’s not fair for CAMHS to be blaming your parenting, there should be support offered, instead of pointing blame, that doesn’t help anyone in this situation.
Did your daughter express any concerns?
Naomi has autism. Part of that condition means she struggles with communication so it’s only been in the last year or so that she has opened up more about what she finds so difficult. I am a blogger and she told me last year about why she does not like to eat and agreed to me sharing it. Her blog has had over 250 thousands hits so far and still counting!
Wow, well done Naomi, and Mum for helping spread awareness. I hope she is very proud. Click over to read Naomi’s blog post here. Amazing girl!!
What help has she received?
School have been incredibly supportive of her issues. Child mental health seems much more important than it was when I was at school and staff seem much more aware to look out for things now. We also see CAMHS too but unfortunately there doesn’t seem to be anyone willing to help with the selective mutism. Speech and language say this needs a phycologist but phycologists just argue that’s its speech and language! Meanwhile my daughter gets no support! She is weight every two weeks and we also have to meet with an eating disorder dietician fortnightly to decide wether Naomi continues to be supported to eat orally or wether we need to proceed further with more drastic measures such as a feeding tube. I hope and pray we continue to avoid that!
How do You help your child? What makes her happy?
A huge part of my daughter’s struggles at down to her brothers complex needs. He is non verbal, has challenging behaviour, screams and attacks her. I have to make sure she is safe at all times. I never force her to eat but do give her a choice between two things I know she likes. We don’t eat at the kitchen table as she finds this far too much so instead I take food to her where she is. This works best for us. I sometimes pick her up at school lunchtimes and she can come home for lunch or I take her out, even if it’s to McDonald’s so she eats and drinks something during the day. I help in the school too so that she can speak to me there in the hope on day she will speak to others too. Mostly I stay emotionally close to her to allow her to tell me anything that is troubling her so we can work through it together.
What’s your biggest worry for her?
My biggest worry is the fact she could one day take her own life. She is a very lonely and vulnerable child who misunderstands the world and people daily. She has no confidence and no self esteem. Someday, despite only being 9, she has no interest in life at all. Her dad suffers from depression and I worry her struggles will hold her back from gaining qualifications, employment or social experience. Right now I worry that she will eat anything tomorrow when she goes to school.
Do You fell there is enough support?
No! There is still a huge assumption that only adults have mental health difficulties and that any struggles a child has are all down to poor parenting! Camhs refuse so many referral as they have more demand than they can possibly meet. For some conditions like selective mutism no-one seems to even know who can help at all! I also feel that parents get the blame too quickly instead of the child actually getting support.
What advice would You give others?
Keep fighting. You know your child better than anyone! While all children can go through phases of bing shy, anxious or feeling low if these feeling persist or you are worried about your child’s moods, eating, sleeping or outlook on life do go to your GP. Having a mental health diagnosis is nothing to be ashamed of and does not take away from how amazing your child is.Despite having all these struggles Naomi has achieved so much. Last year she made headline news when she wrote to the local ‘park builders’ asking why they never out in a disabled swing for her brother in the park. She has had a quarter of a million people read about her food struggles via my blog and just two weeks ago she was nominated for the National Diversity Awards in the category of Role Model. She is my inspiration!