Welcome

Hello and welcome to Ramblings.

I guess the best place for me to start is to introduce myself. I am a wife and a mother to three children, two of which have ASC traits. At the time of writing, my children are 16, 14 and 8. I have purposely chosen not to use my real name, simply to protect my children, but you can call me Jessica.

For the last two years, my family have been in crisis due to our eldest child's mental health and I wanted to write this blog for two reasons: 

Firstly, to raise awareness of mental health and the impact it has on the person who suffers, as well as the rest of the family. 

Secondly, in the hope that another parent who is struggling with a child and their mental health will see they are not alone. There are other people who are struggling too, and although the behaviours may differ, the impact is similar, and I understand what you are going through.

I will write real events as they happen to highlight the challenges and successes my daughter faces in her daily life. 

First, I will give you a bit of historical context.

My 16 year old daughter has struggled with anxiety in varying forms her whole life. She would cry every morning when I dropped her off to nursery. Not unusual I hear you say... and you would be right. But this crying continued every morning all the way through nursery, reception, year1, year 2, year 3. 

Every day I collected her, she would tell me all the bad things that had happened. How this child looked at her and whispered to someone else, so she knew they were talking about her. How a girl had said shut up to her and it was rude, so she vowed never to be that girls friend because she wasn't a nice person. To her word - at the tender age of 5 -  she never did speak to that child again. 

She came home from school and would have a meltdown about how she had no friends, everyone hated her. When I spoke to the teachers about it the next day, they would always say that they didn't notice anything, how my daughter was fine in school,  and super intelligent. Despite my mummy niggle, I believed they knew what they were talking about and continued to have the same battles every day.

At home she hated to wear socks, the seem always caused her discomfort and she would scream when I put her shoes on. In the ends we just wore them inside out. When she was colouring, she would line all her pencils up and keep them in colour order (she would arrange this independently). She was a free reader by the age of 8 and the top of her class in every subject. She loved to please people but was always weary of doing something new. She was uncoordinated and hates P.E or sports and was not confident at riding her bike without stabilisers until she was 7.

When we started year 4 I had enough of the teachers telling me it was my fault because I mollycoddled her, that she was picking up on my own anxiety, snatching her off me and telling me she was fine and always stopped crying after 10 minutes, so I changed her school to a little village school where she had 15 other pupils on her class and it was actually year 3 and 4 in one (so 7 pupils in her year group).

This school started their day differently. The children had a morning playtime for 10 minutes and then they all lined up and went into school together. My daughter was ok with this on the first day. Sounds so silly, but she walked away from me into school as opposed to me dropping her off at the classroom door and walking away in her old school. This made such a huge difference and she continued to go into school every morning without crying.

The social struggled continued. When I collected her, she would talk at me for an hour and a half, telling me in such detail about her day, who said what and how they are not nice. Of course I sat with her and discussed other perspectives (as I always have) and then I tried to get her to tell me three positive things for every one negative... This was a chore.

I spoke to her teachers about it, as the inconsolable crying/meltdowns at home in the evening were taking longer and longer to get through. I was always met with "she's fine in school, she does her work, she is so clever, very bright...' So again I continued to grin and bare it, accepting that they know what they were talking about and she was my first child so they knew best...

Then came the transition to middle school at year 5... My daughter was 9 now and she has become quite obsessed with her hair. In the morning she would have meltdowns if her hair wasn't perfect. Her outburst after school became quite violent, hitting out and pushing her brothers, kicking me, screaming, slamming doors. She struggled to get to sleep and night, over thinking everything.

I spoke to her school and they again said how well behaved she is in school and they didn't believe me when I said about her outbursts at home. They suggested that as she is 9, perhaps hormones were at play... It was only when the school nurse took her weight some months laters and called as they were concerned about her, that someone actually listened to me.

We saw a dietitian who told us to fortify her foods. It made no difference as she has always been a grazer, never able to consume a 'meal' but will eat little and often. 

During this time, there was a horrific accident during the summer holidays, where a girl whom attended my daughters school, was tragically killed (along with her brothers and step brothers) in a car accident by a lorry driver talking on his mobile phone. My daughter took this news particularly bad, and you would expect that from children. The concern we had was that our daughter knew of the girl, but they were not close, nor in the same circle of friends. However, to our daughter, she was her best friend.

We relayed all of this to the school nurse and I explained what was happening at home and they referred us to CHUMS where she was assessed by a therapist who concluded that she had ASC traits, and suggested that I complete a parenting course called 1, 2, 3 Magic. They advised that because my daughter wasn't struggling in school academically, she did not warrant a diagnosis of Autism.

Dutifully, believing they knew best, I attended the course and continued to battle with meltdowns before and after school.

My daughter started to get headaches. Not uncommon for children who are coming into puberty, so we offered paracetamol to help when needed. My daughter would scream at me, saying I didn't care about her or that she had a migraine, so I took her to the doctor where he reassured her it was a headache possibly due to hormone changes and that she may start her periods soon. She accepted what they said.

I remember one late afternoon she said she had a headache, was seeing black spots and thinks she has a brain tumour. She screamed at me that I didn't even care because I wouldn't take her to the doctor. So I called 111, explained what was going on and they sent us up to a hospital to be seen my a paediatric doctor. They confirmed no brain tumour, did lost of physical tests including a heart trace. Confirmed she was a healthy young girl and no brain tumour, heart problems and that her bloods were good, if only a little anaemic.

I must confess, at this point my patience is running out. Something is not quite right with my daughter, everything is such hard work and I am begging to think it's all in my head, because all the teachers, doctors say is 'she's such a lovely girl' Well, yes she is but it's not like this at home! I feel like I am the problem, I am the one who can't cope being a mother, I must be handling everything all wrong...

I question why I have to tap the back of her collar every morning before she can go out the door to go to school. Why when she is anxious, she can't deal with her brothers even talking/breathing near her. Why she is always saying rude things and in an abrupt tone, why she can never see things from other people perspectives, why she has a meltdown because we are going in the car shopping, but she will get in fine if I am taking her to a playdate. Why do I have to sit every day after school and work to listen to her vent off, or talk through situations to help her see that things aren't so black and white...

Fast forward to year 10. We're still struggling and we have moved to a new county. Sadly we lost my mother in-law and made the decision to move closer to family, as we were all alone.

Things get progressively worse. She tries to 'fit it' with the popular kids at high school. Everyone is sexting and sending nudes. Despite us warning her of all of this and explaining it all, she does it and feels discussed with herself. Pictures go around school and she starts self-harming. 

I take her to the hospital and we are referred to CAMHS. I explain about her whole life anxiety, the struggles we have faced, the ASC traits diagnosis, eating habits declining with anxiety moods etc. She is diagnosed with depression and prescribed some medication and she is offered CBT therapy. 

Cue COVID-19... I am deemed  critically extremely vulnerable, so am advised to shield. School close and they are all homeschooling. I cannot begin to tell you the difference this made in her in terms of her anxiety. That and I presume the serotonin supplements (as she calls them). She is calmer, loves doing her work online and is thriving. She tells CAMHS she wants to come off her medication, which they support her with. She completes her CBT therapy and they diagnose her with emotional disregulation (however, you spell it).

As restrictions ease over the summer, I am still shielding, so me children are restricted in what they can do. Intellectually she gets this, but emotionally she cross, life is so unfair and we have lots of battles. We trust her to go out with friends but stress the need for social distancing. She doesn't do this. School starts and she hates wearing a mask. She starts self-harming again.

Back to the hospital, back to CAMHS to discuss next steps and she has completed CBT and had lots of strategies, but cannot use them in times of crisis because she doesn't recognise her changes in behaviour. She also goes 0-60 in the flick of a switch. She is put back on serotonin supplements, which do not reduce our crisis episodes, so a month later the dose is increased. 

G.C.S.E's are cancelled and assessments put in place. Like all year 11's, this is tough for them. The change in structure for my daughter is too much. Self-harming has now bled into thoughts of suicide. She has made plans to end her life, she has a dissociative episode and took herself to a bridge. I take her back to hospital and she is deemed a high risk of accidental suicide. Her medication is increased again - now at the highest dose for the medication she has been prescribed. She is also put on group therapy course.

She was released into our 24 hour care, so I had to give up work. We have no financial support and are surviving on my husbands wage. 

G.C.S.E assessments finished, school finished and with the increased in medication we notice a marked difference in her behaviour/moods. We have a medication review and I confirm we appear more stable, but cannot say if this is due to the medication or the fact she no longer has school. We agree we will continue as we are with the medication, the group therapy and review in September once she has started college.

Recently we have found ourselves in crisis again. I contacts CAMHS again, as we do not have a designated person I have to go through the whole history every time. I get a call from the lady who facilitates the group sessions my daughter is currently doing. She expresses her own concerns for my daughters safety. I discuss the triggers (social again) and she feels it would now be beneficial to start the initial assessments for ASC to see if the traits are strong enough for a formal diagnosis.

So this is where we are currently. 

I would like to blog about our journey through diagnosis, how this impacts our daughter and our family. I hope that our story helps other families who have children with ASC traits, anxiety and or depression, even if it's just to know that someone else understands your daily struggle. I hope that you as a parent learn from my mistakes of not following my mummy gut all those years ago, and fight to get what your child needs.

I also hope that teachers, and other professionals who work with young children read through some of the behaviours of our early experiences and are more mindful of how they take crying children from their parents at school, and that when it happens on a daily basis, it needs to be investigated - without judgment on the parents. We're not all child abusers or parents who pretend their children are sick to get attention/benefits etc, we are genuinely struggling with a child who has challenges and complexities that need understanding, diagnosis and support!

Jessica 

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