Light at the end of the tunnel

This is my 8 year old daughter.?She is funny, deadpan, empathetic, bilingual, a keen cyclist, loves baking and hedgehogs.?She is also autistic and has ADHD and dyslexia. She has a cognitive age of a 5.8 year old.?She really struggles with social interactions.?When things are bad, she self-harms, has over 20 meltdowns a day, becomes violent, and has night terrors.

She has what is called a “spikey” profile.?Many people don’t realise she is autistic.?She “masks” in public, which is very common in autistic girls, and falls apart in the safety of the home.

This week we won a Tribunal case against our Local Authority about her education. After three years in crisis and barely surviving in a mainstream school, we finally have a place at a specialist autism school that caters to kids of her profile. ?

While this is a massively positive development, I’m left feeling hollowed and emotionally and physically exhausted. ?Why did it have to go this far and why is there not more support for families with special needs (SEN) children??Why did we have to battle for her needs to be recognized and met every step of the way?

We knew from the start that she was different.?She started crying almost non-stop when she was 10 days old.?On bad days, and there were many, my husband and I divided the days into 90 min intervals to give each other a break.?I still remember the dread of walking up the stairs back to the flat.?

When reading the definition of PTSD, this accurately described the impact of this first year.?

She then missed every developmental milestone. She did not walk until the age of 2, was non-verbal until 4, rarely slept for more than 20 min during the day and woke several times at night until she was 7.?She barely ate.

After having had a very active social life pre-children, we pretty much stopped after our daughter was born.?Too knackering was the prep and aftermath of social gatherings for her and us.?And even though I attempted not to, it was hard to stop comparing our beautiful child with others.?The developmental differences were hard to ignore.?It was painful and isolating.

Despite all of this, it took until she was almost 4 to get an answer.?The autism diagnosis felt liberating.?Finally, things made sense, finally we had a shared vocabulary to tap into, a community to access and option for support.?

It also came with waves of intense grief.?Grief around letting go of the life we thought she would have, grief for what this meant for us as a family, her brother, our relationships with friends and family, and our relationship as a couple.?The grief was crippling and there was never enough time to process it.

What we spent our time on instead was battling the system.

Battling to get an Education and Health Care Plan (EHCP), battling to get 1:1 support in school, battling to have her school start delayed by a year as she was half the cognitive age of her peers, battling to get any kind of therapeutic support to help us get through the days.

We were hopeful when she started primary school. ?Things seemed ok initially, however started to unravel a few months in.?Then the C19 lockdown started and we made a startling discovery.?Not only was she much calmer in home education, but her learning speed quadrupled, she slept better, ate better, actually shot up physically.?She learnt to whistle and ride a bike in that first lockdown.?Important life skills!?

Post lockdown, we repeatedly tried to settle her back in school, each time being more traumatic.?

The mere mention of school would make her wail, knock her head against the wall, bite herself until she was bleeding.?We had to carry her down the stairs screaming to get her out the house.?On her way to school, she would shut down, eyes empty, not responding.?She’d silently walk in.?At pick up, school usually reported she was “fine”.?As soon as we were home, the meltdowns started.?She would scream for hours on end.?Until we were back at the school gate.?Eyes empty.?This is autistic masking.

We had three emergency reviews with the school and Local Authority in 12 months.?We agreed that something needed to change.?We applied to a school with more autism expertise.?Got rejected. ??We applied to another school with autism expertise.?Got rejected.?We tried all models of hybrid schooling to give her time to regulate.

Then the Head at our daughter’s school changed.?

She gave us an ultimatum: either send your daughter back fulltime or be expelled.?She also sent social services our way for concerns around safeguarding.

We were at breaking point and left with nowhere else to turn.?The only way forward was to go to Tribunal.

So here we are 8 months later: privately commissioned assessments from a psychiatrist, educational psychologist and occupational therapist, 483 pages of evidence, sleepless nights, and hour and hours of prep.?Thousands of pounds in addition to the six-figure sum for years of home schooling and other support.

We won the case.?But was all this pain really necessary?

The story of our family is not unique.?In the UK at least 1 out of 80 children is autistic and many families do not have the time, money or energy to fight their way through the system.?The SEN system is deeply unequal and many children and their families loose out.

My four take aways from the last years are as follows:

(1) Gov. UK UK : fund Local Authorities (LA’s) properly to deliver SEN responsibilities. While the legal framework to support SEN children is strong, LA’s are not funded properly to deliver it.?There is currently a ￡2.4bn funding black hole, which is likely to increase.

(2) @Local Authorities: improve the public provision for SEN children.?It’s more cost effective than paying private providers.

(3) @Employers: educate staff on neurodiversity.?The UK is pretty good here, however other countries have a long way to go, including my native Germany.?One of our low points came this summer at BER - Berlin Brandenburg Airport .?Our daughter finds airports very difficult and had a meltdown at the security check.?This resulted in first a security guard yelling at her to be quiet.?Shortly after a border guard ( DCVSA Bundespolizei ) walked up to her and told her to “shut up”.?A supervisor was standing close by.?My husband had informed her about our daughter’s needs.?She did not intervene.

(4) @NHS and @Local authorities: Fund interventions to support SEN kids. We had the honor of the brilliant Jo Westley, UKBA(cert), BCBA and her team deliver over 5,000 of ABA therapy. It has been life changing.?And it laid the foundation for our daughter hopefully living independently one day.?We had to fund it privately, which few families are in the position to do.?Imagine the longterm benefit, if all children had ready access to therapeutical support?

Most importantly, I’d like to express my heartfelt THANK YOU to our family and friends and colleagues, who kept checking in.?It’s been such an isolating journey and it is often hard to relay just how challenging a “normal” day in our family can be.?Thank you for asking, for caring and for sticking with us – it really meant something.

Looking forward, I’m quietly excited about this Tribunal decision allowing us to start a new chapter.?May our daughter’s settle in well at her new school.?

And may the next year bring time for grief, healing and lightness.??Thank you all!

Dr. Philine Erfurt Sandhu , Joel Sandhu , Dr. Anne L?hnert , Jenny Ricks , Susana Torrezao , Richa Jha , Steffi Metzler , Kate OBrien , Andrew O. Jones , Aurélia Nguyen , Hannah Burris , Ben Millinchip , Jacqueline von Gottberg , Diana Khromova , Violeta Isabel Pérez Nueno , David Humphries , Ozan Beran Akturan , Saira George-Carballo , Sachin Bhardwaj , Anita Janda , Andrew Finlayson , Ross Wooddisse , Peter-Christoph Schulz , Hannah F. , Jonathan Howard-Brand , Cathryn Costello , Kevin Bailey , Jean-Paul Héraud , ??Aimie Chapple , Kai Fierle-Hedrick , Karen Schiltroth , Julika Niehaus , Matthias Beer , Matthias Erfurt , Ash Idnani , Thomas Hendreich , Doina S. , Franziska Ferraz , Octávio Luiz Motta Ferraz , Cathy Garner , Susanne Wessendorf