It’s hard to know where to begin. Our story feels so convoluted at times- where do I even start.
Our teenage daughters were born in the UK but we moved to South Africa for 9 years – which meant that for our eldest, she completed primary school and started secondary school in SA and for our youngest, she completed all but 2 years of primary. After we moved, we noticed that our eldest became terrified of germs and was particularly fussy and concerned about washing her hands. We went through a phase of at least a month where she would cry at night when going to bed through worry about germs and I would have to sit with her to calm her. She grew out of it and the psychologist that we took her to said that we were worrying for nothing and she was just adjusting to a big life change (moving continents) She was always an active child and quite an over-achiever and except for always having teachers complain about her chattiness, she won loads of awards and became a prefect and won a prestigious scholarship for secondary school. We had no other concerns.
Our youngest was this little cherub that everyone fawned over. She was shy and often played alone but no teacher ever flagged any concerns. She had few friends although she was popular but she preferred just being at home and wasn’t interested in play dates or sleepovers or any of the things her peers were into.
Jump forward 9 years and we’re back in the UK. Our eldest goes to secondary and the youngest year 6. They struggle academically initially as it is a vastly different curriculum but slowly seem to settle in.
Then the first blow. I walk in accidentally on my eldest having a shower and see cutting marks up both her thighs. I handled it so badly. I cried and asked her why and she cried and tried to make up excuses. Then that evening I did research and realised to my shame that my reaction was exactly the opposite of what she needed. I booked a doctor’s appointment and told her that we’d support her and she can tell us anything, etc. The doctor said she’d make a referral to CAMHS and we’d hear from them. We waited…and waited. About 6 months later, our daughter told us that she was gay and we were so relieved because I naively through that this was why she was so anxious and now all would be okay. I then noticed scabs on her arms and realised that she was cutting again. Made another appointment, at a new GP and they told us that there was no referral on her record and they’d start the process. We received a call from a CAMHS nurse a few days later who said that I needed to keep sharp objects away from her and if I found her bleeding, to call 999. This is truly what she said. I was so stunned and felt so alone. I sent off brutal emails to CAMHS telling them how they’d failed us and received a reply, 2 months later, inviting us in for an appointment. Over a period of 3-5 months – they diagnosed our child as having ADHD, being on the ASD spectrum and having acute anxiety. In the meantime, she’d turned 18, so now we’re waiting for Adult services to contact us for her further assessments re the ASD. She has however started ADHD medication and it has been life-changing for her. (and us) She laughs again and feels more in control of her mind. We still have a road to travel but at least we feel as if we’re on the right one at the moment.
Our youngest in the meantime started having severe anxiety attacks. This coincided with the world going into lockdown and I had a major health scare. She became extremely anxious about going to school. (when it opened up again) She was ill all the time. She had stomach complaints, diarrhea, vomiting, headaches. Our doctor wasn’t seeing patients and so during a telephone call about my concerns, he suggested that he make a CAMHS referral for anxiety. After about 3 months, we’d heard nothing and our child had gotten worse. Her panic attacks were so severe that she’d hyperventilate and feel faint and she’d be wet from perspiration. It broke my heart. She also finally told us that she was obsessing about the fact that if she went to school, I may die and she’d never see me again. The school in the meantime was giving me a hard time due to her being absent at least one day every week. I told the school about her anxiety and that we were waiting for CAMHS. Then I received the holy grail email from CAMHS to say we were having an online video call assessment. This call broke my heart. My child was crying, she was apologising to everyone for being such a let down and she felt out of control and couldn’t explain why she was so anxious. CAMHS sent a load of test forms for the school to complete, for our child to complete and for us to complete. We did this separately. We then received a call back, about 3 months later to say that she had scored exceptionally high on the ASD scale and they think she also has OCD tendencies and of course, anxiety. The school agreed to decrease some of her classes in the meantime – roughly around 1 period less a day but although this was a start, it still wasn’t enough. Being in a class of 30+ children, particularly during a pandemic, was causing her extreme anxiety.
We are still waiting for the official ASD appointment, the waiting list is a year long. In the meantime, as she has no ‘official’ diagnosis and she has no EHCP (education and health plan), she gets no official allowances. Due to my constant emails to the school and keeping them very much in the loop, they are allowing her to have a slightly reduced timetable for the rest of this school year and as grateful as we are, it is still causing her immense stress and anxiety going to school every day. She is seeing a school counsellor once a week but reports back that the counsellor keeps trying to ask her what is causing her stress and she can’t pinpoint it – so it is causing her even more stress.
I feel as if we are hamsters on a wheel. Every day is a new start, trying to stay positive and be understanding and caring but it is exhausting. Exhausting for us as parents, but also for our children who are constantly fighting adrenaline surges caused by stress.
If I could afford to, I would pull my youngest out of school and allow her to homeschool online. She flourished during lockdown, when this was judged as an acceptable way to learn. She doesn’t fit into a traditional school system and every year it gets more and more difficult for her but we just have to wait…as the healthcare system is so overloaded.
Initially I was angry. I wanted to shout at CAMHS and at the school that they didn’t understand just how severe my child’s anxiety is. But I’ve since realised that we’re not alone. There is not enough funding, so there is not enough staff. There’s the added burden of a pandemic and therefore even more of a demand on a system already at breaking point.
My story probably sounds really depressing but the main reason for me telling it is that I know that we are not alone in this. And you need to know that too. Our eldest child (adult) has made it through and although she obviously has ups and downs, it is the regular teenage stuff and we see the light. Although my husband and I have very different approaches, he’s more of a ‘tough love’ kind of guy, ultimately, we have stuck together through this and showed our children a united front. I think that this helps.
Now I spend much of my free time researching how girls mask their emotions and why it is often so much later that a girl is therefore diagnosed as ASD. I find it so comforting to be part of online communities, Facebook groups et al as it makes me feel less alone. I stay anonymous for the sake of my children as it is their story to tell. But I hope that this story makes you feel less alone too.
Written by Whatever Together member, SAMum