Here, Teresa shares the difficulties her daughter experienced from an early age and how a question from an assistant psychologist, changed everything!
From an early age, T always had problems socially. When she started nursery at the age of 3 she would make herself physically sick so she wouldn’t have to go. Teachers always put it down to her being shy and clingy. This carried on through her school years. She always had problems going into school and a lot of the time she was taken in by the teachers in a state of distress.
The primary school years
Things really changed when she started year five at primary school, she complained of being in pain everyday and her toilet habits began to change. She became frequently constipated. Her GP put it down to anxiety. Her attendance started to drop due to being ill and she was missing school for weeks at a time.
The doctor referred her to a paediatrician, who diagnosed the condition as being abdominal migraine with possible IBS.
She was prescribed Propranolol but the side effects, such as shortness of breath and the feeling that her heart was fluttering, increased her anxiety and caused her to panic. We were then referred to the family support unit. A lady would come to school for an hour a week and do sessions to improve her confidence. I was told by the support worker that my daughter would sit in the room and just stare at her… no speaking, no emotion, just blank. The support worker suggested involving CAMHS and she contacted her paediatrician to get the ball rolling.
Asking CAMHS for help
We met with CAMHS for a introduction session. They concluded that she was fine and gave us some websites to refer to.
The periods of school refusal continued. When T did manage to attend, the teacher would just let her sit and cry in class.
Transitioning to high school
The transition to high school was looming and I remember asking T’s friends’ parents which school they were thinking about. After a lot of dropping hints about the benefit of the high school closest to us, they chose that school. I would say, “Wouldn’t it be good if they could all walk together” and how it would be safer to walk in a group. I thought that if that group walked together then T might feel less anxious. Over the school holidays I would invite her friends over for sleepovers, but they were a disaster because after a few hours T would want to be alone and would leave me to occupy and look after her friends.
High school started and the anxiety became worse. There was more absence and many doctors visits resulting in another referral to CAMHS.
Back to CAMHS
CAMHS decided that T might benefit from group sessions for low mood and anxiety. We were allocated ten sessions. T managed three and could not cope.
Luckily the assistant psychologist noticed that T did not engage in the group sessions and arranged 1:2:1 sessions instead.
During the set up of these sessions she asked me how long T had been diagnosed with ASD.
When I said “She hasn’t got ASD”, she asked me to look up the symptoms on line and to contact her if I noticed any similarities.
This was when everything changed.
On the Umbrella Pathway
The referral to the umbrella pathway began as did the 1:2:1 sessions, but T was not able to engage with the mental health worker.
The assistant wrote a letter to school asking for a plan to be put in place and some of this was followed.
We had all of T’s assessments for the umbrella pathway done virtually because of the COVID lockdown. With no face-to-face time I think a lot of information which is relevant was missed and her diagnosis has been affected. However, in August 2020, she received her autism diagnosis.
T returned to school for a short time in September 2020. In October 2020, she was ill with IBS problems and she has not returned to school.
Applying for an EHCP
I contacted SENDIASS at this stage and they advised me to apply for a EHCP. School wouldn’t apply for us so I did it myself using template letters I found online.
Another knock back
Its now March 2021 and I am in the process of appealing the local authority’s decision to refuse to assess.
I have never felt so stressed, it feels as if we’ve been given this diagnosis and just been left to get on with it. There’s no mental health support. T has not left the house since October. School has just started to provide extra provision but only because I started the EHCP process and tribunal process myself.
The past few months have been TOUGH and COVID has made them so much worse.
Christmas was the worst ever, T refused to come out of her room and didn’t want to open any presents. It was almost as if she had flipped a switch and turned herself off. Her bad days are exhausting, she has panic attacks over the simplest things. She can go for days without speaking or showing any kind of anything. She does not want to leave the house.
T is a bright girl , has a lovely sense of humour and is very intelligent. She is a very good artist but struggles with art as she is a perfectionist. She doubts herself all the time and says she is pathetic and worthless. She loves animals and at times can be very caring .
I worry for the future, especially her education. If she had the right kind of support, I think she would flourish.
Teresa
(Mum to 15-year-old ‘T’)
A note from Patsy:
Are you new to autism? Here are some definitions to help you learn the lingo!
CAMHS: Child and Adolescent Mental Health Services (CAMHS) has specialist workers trained to work with mental health difficulties that are impacting on activities of daily living for children and young people. You can access CAMHS via a GP. However, the wait can be long. In the meantime, you may want to find support from Young Minds or arrange a Discovery call with me, to see how I can help.
Umbrella Pathway: This is the name for the assessment process for neuro-divergent children. Referrals can be made via a GP, a paediatrician and CAMHS.
EHCP: What should be the holy grail for our children, an Education Health and Care Plan details any special educational needs a child has and the provision a local authority must put in place to help them. You can apply for an EHCP if your child’s school won’t do it for you.
https://www.ipsea.org.uk/model-letters
SENDIASS: The Special Educational Needs and Disabilities Information, Advice and Support Service helps parents of SEN children and offers advice to educational professionals.
Search SENDIASS by area.