Our Story.

Our Story. 

Will try and keep this short!🤔. I don’t share our full story very often. When you’ve had to deal with accusations from SS four times in 10 years it really puts a back up. I have 2 with additional needs. B (14) has diagnosed severe auditory processing disorder, misophonia, hyperacausis and tinnitus. sensory processing disorder across all 8 senses (mostly avoiding). She is very demand avoidant (PDA). Anxiety and hyper-vigilance rule her day to day life, her constant need to be in control and control. We asked for an ASD referral originally when she was 2.5 years old. It took 9 years of being fobbed off, doing parenting courses, scrutinised by SS and having a judgemental GP who refused to refer to half the places we needed. CAMHS decided there were no issues after watching her play alone for 20 minutes. 🙄We moved in January 2015, with this came an amazing GP surgery. He took the time to listen, could see we were at our wits end with the behaviours, aggression, masking at school, no sense of danger. Finally in 2015 we had referrals to OT, ENT and ASD team. We felt let down by the OT report (previous school hindered) so in Jan 2016 we sought a private SPD assessment with BIBIC. The day of results I cried hard, hearing confirmation of what we’d known for years was hard and emotional. In March she received her APD diagnosis, the severity of which is too bad for desensitisation. We’re 18m down the ASD waiting list.

This is the hardest.

No support unless we fund it, no funding unless we have a formal ASD diagnosis, so much for person centred approach! Thankfully our decision to change schools 12m ago was a huge positive. B gets more support, limited to barriers she’s put in. For the first time since our battle began I heard an educator state “we wouldn’t be surprised by an ASD diagnosis for B”! ” Since writing this B has her autism diagnosis; 17/11/2017- not a date I’ll ever forget, or the release of tension knowing I was right. It’s now 2020, and we’re waiting a referral discuss ARFID (Avoidant Restrictive Food Intake Disorder).

My son D (10) is the polar opposite of B. His sensory seeking is off the charts bouncing, climbing, jumping with auditory stimming. His battle hasn’t been anywhere as stressful as B’s. He has Sendory, auditory and visual processing difficulties, suspected sutidtic, suspected dyspraxia, asthma and functional bladder/bowel needs. He is one of B’s biggest triggers. He has exercises for his joints and leg pains. Amongst all this I’ve met amazing families going through similar journeys. I frequently hear “excuses” given by professionals who want to put a round peg in a square hole such as “it’s your parenting”, “I’m the professional, I know what’s best”, “here, go on a parenting course!” and it goes on. 

It appears many professionals forget that we are the professionals on our children, many of us having our own careers before giving it up due to caring needs. How many know I’m a qualified photographer who managed a team of 40 as an Area Trainer.

Since this I have retrained in SEND and Disability law, Sensory Processing Awareness and Autism. I run my own business PHOENIX ASENDS (Parent[carer] Help On Every Need Imaginable X. Autism Sensory Educational Needs Disability Services). I work as an independent Autism Advocate and Trainer delivering presentations and training on Autism Masking, Sensory Needs, EHCP’s and APD/ Executive Functions.

The biggest personal WOW of my journey was realising I’m autistic too (have a working diagnosis, waiting formal one).

We are not just parent Carers. We deserve to be heard and listened to.”

Adding to update that after 10 years of battling. B was diagnosed HFA with complex needs in November 2017.

If you’re in Devon and want to have your voice heard, or you want more information on what I do; email phoenixasends@icloud.com

And Never Doubt Yourself share your story, share your views and help us get a change!