The sad thing is that on this day of jokes…none of this is a laughing matter. April is #AutismAwareness Month. This is the story of how the health, education and social care systems are failing not just one little girl with autism but many. If you do nothing else, please share our story with everyone you know… As PanKwake says…autism, deal wif it. But we should not also have to deal with abuse of power by those who are supposed to be helping us…
Spring 2008 (age two and a half) – PanKwake’s parents consulted her health visitor because she spoke nothing beyond mama, dada and no. Their concerns were dismissed as being overprotective…without any investigation
June 2008 – PanKwake had her first seizure. She was rushed in an ambulance to the Whittington hospital. Despite both paternal and maternal family history of childhood epilepsy…not a single test was done.
April 2009 – After another seizure at her nursery PanKwake was again taken via ambulance to the Whittington. Again her mother was told…it was just febrile without any investigations. They were even told they could continue with their plans to visit family in America…where she had ANOTHER seizure…American doctors diagnosed epilepsy and they were forced to remain another week in the USA while her condition stabilized.
June 2009 – An EEG at the Whittington fails to capture a seizure but shows sufficient epileptiform bursts to diagnose ‘idiopathic epilepsy’…idiopathic means they don’t know why…and six years later they still don’t because….
For the next two and a half years PanKwake was left to languish under the care of a simple pediatrician who dismissed every single one of her mother’s request for further testing…who did not care as long as PanKwake was not showing up in her A&E that her mother believed she was having night time seizures. She was told…’everyone moves in their sleep’ and that she ‘did not know what it was to have a special needs child.’ This pediatrician who saw PanKwake regularly failed to note the developmental and behavioral challenges that might have allowed her to access early interventions. Six months after PanKwake was finally assigned a new doctor her mother was one a bus when she overheard this doctor talking with a colleague…she was heard to commit that she ‘was too busy to deal with continuing education’ on children’s issues such as autism.
Spring 2010 – The experienced and knowledgeable manager of the nursery which PanKwake attended contacted Islington council’s Early Years SENCo (Special Educational Needs Coordinator) because of the violent outbursts, lack of interaction with other children and odd behaviors (never would wear shoes or socks) that PanKwake was exhibiting. The SENCo spent one hour with PanKwake and yet again dismissed concerns of those closest to her. Another opportunity for early intervention lost thanks to Islington council.
August 2010 – Despite repeated requests to meet with the SENCo for the school where PanKwake was to begin Reception in the fall, it was not until her mother sent a ‘nasty’ letter to the head teacher that such a meeting happened. It was brief and the SENCo only wanted to know about her seizures…would not listen to any concerns about her development or behaviors.
September 2010 – PanKwake begins Pooles Park Primary…with no support…no investigation of her behaviors was ever offered despite numerous concerns raised by her parents.
Spring 2011 – Following the reassignment of the experienced teaching assistant to which PanKwake had bonded her behaviors and challenges deteriorate quickly…but not as quickly as the relationship between her parents and the school who blame their recent separation for everything.
Late Spring 2011 – PanKwake (and others) is being bullied so badly by a group of boys that her parents demanded a meeting with the Key Stage 1 coordinator. They are told that despite a stated ‘zero-tolerance’ policy for bullying…’that is just the way life is’ and that PanKwake ‘needs to grow thicker skin.’
At the same time MomKwake has to pick up a sleeping PanKwake who has wet herself (a possible sign of seizures) and carry her NAKED save her Mom’s coat to the local shops where she must purchase her clothes to get her home in…because her teacher could not be bothered to get off the phone and get the bag of extra clothes that her parents had provided for just such an emergency. And yes they complained then too…and nothing happened.
The only good thing to come out of her time at school was…that pediatrician finally listened when the school started complaining about PanKwake falling asleep in class. An EEG revealed that PanKwake was as MomKwake had been saying for two years…having seizures (nine minutes long) in her sleep. Who knows what might have happened?!?
In September of 2011, after months of being called to pick PanKwake up early because she had fallen asleep in class AGAIN…and her asking every day, several times a day…am I dumb/stupid/ugly from all the bullying, PanKwake’s parents felt they had NO choice but to take her out of school and teach her at home. You know what the SENCo said…that it was probably the best choice.
November 2011 – after submitting the de-registration letter MomKwake was contacted by the Home Education officer from Islington. He strong armed, bullied and demanded that he MUST visit and approve their provision. Not knowing any better yet MomKwake submitted. And the man kept going on and on about ‘best practices’ this, good practice that about the resources and plans for homeschooling PanKwake. Then two days later he calls and tells MomKwake that he is not going to ‘approve’ them because he believes that he wants her to get additional support with those same behaviors that Pooles Park had ignored for a year. MomKwake immediately contacts the psychologist that PanKwake had seen once or twice in school…as well as requests referrals from the GP and her new pediatrician.
February 2012 – That home education officer calls to follow –up. MomKwake informs him that she has just begun the CAMHS (Child and Adolescent Mental Health Service) process and that she had nothing new to report. He tells her that he does not care about any of that additional support stuff…he just wants PROOF that she is home educating PanKwake…proof that MomKwake has now learned he is not entitled to under UK law. MomKwake writes letters informing the council of her stance…and challenges them to take her to court.
The next year and a half fly and drag by with tests and evaluations for PanKwake…her intelligence is near normal, she has ADHD, she does not have ADHD, she has Sensory Processing Disorder and dyspraxia. Then in October 2013 the big one…PanKwake is high-functioning autistic. At last everything makes sense…and nothing does.
Her parents are bombarded with new options…do you know that Research Autism has 1,224 listings for interventions. One thing that even the CAMHS professionals agreed with her high-functioning autism they did not know of a school placement that could meet PanKwake’s complex needs.
After months of thinking it over MomKwake decides to apply for a personal budget to help with respite care and provide PanKwake with opportunities that they could not. She asks the wonderful Epilepsy Nurse in Islington to re-start the Team Around the Child process and refer them to Islington’s Disabled Children’s Team.
June 2014 – MomKwake meets with a wonderful and caring social worker and explains that while she knows their decision to LEGALLY home educate PanKwake makes their family unique they are also aware that tribunals have determined that care and education are separate issues and that they have the same rights as if she were in school. They are assured that this is how Islington sees it too.
For months, MomKwake works with this social worker to finalize PanKwake’s support plan. She spends hours upon hours openly and honestly discussing everything including PanKwake’s development, socialization and education with him. He puts it all into a thorough document which he submits to some mysterious ‘panel’ of decision makers. Then he is gone…
January 2015 – MomKwake meets the new social worker and again explains everything regarding home education. And again is reassured that it will not be an issue.
February 2015 – As MomKwake begins to finalize the support plan with this new social worker trouble arises. The draft document contains as a goal for PanKwake…I need to be in education. MomKwake politely but firmly informs this social worker that PanKwake is in education. More drafts with more ignorance and more bullying towards putting PanKwake back into the very educational system that failed her to begin with…failed to diagnose her autism, failed to meet her needs and most especially failed to protect her from bullying. The social worker accedes but says that she wants ‘her friend’ from education to attend the next TAC meeting. MomKwake asks verbally who this person is and what her expertize that applies to PanKwake, autism or home education is. She is again told…actually the woman patted her arm and condescendingly said…don’t worry, she is just my friend from education. MomKwake informs her politely that she is not happy for anyone not directly involved in PanKwake’s care to be involved in this important meeting.
February 17, 2015 – MomKwake submits to Islington the Request for a Statutory Assessment for an Education, Health and Care Plan…something that had been HER plan all along. But something which she had repeatedly told the TAC committee she would do only AFTER the social care support plan was finalized. BUT that social worker had promised it would be final by the next TAC meeting which was scheduled for March 17.
March 2015 – The planned TAC meeting must be rescheduled because of a conflicting appointment. The social worker sends an email to the whole TAC committee asking that the time be changed so that ‘her friend from education’ can attend. MomKwake replies to the whole committee that no one from education save the assigned SEN Keyworker was welcome. She then sends private emails to the social worker and ultimately her supervisor asserting once more their objections to having anyone not directly involved in PanKwake’s care at the meeting. She demands in writing to know who this person is…and why she was contacted at all…in violation of PanKwake’s right to confidentiality. How can home education be a ‘serious harm or preservation of life’ issue that is the only reason for breaking confidentiality…if it is totally and completely legal in the UK? PanKwake’s parents are assured AGAIN that the Disabled Children’s Team of Islington realize that education and care are separate matters and are promised that they will be given a new social worker…
But their care plan is once more denied by this SECRET panel…now at this later hour they are informed that the panel want more information about education…something they are not entitled to. MomKwake also learns that the Head of Pupil Services for Islington sits on this panel. Anyone else smell a fish? Ironically, MomKwake had met this woman just days before. She had said that Islington wanted to re-establish relations with home education families…innocent, naïve, stupid MomKwake had even offered her support. The Head of the Disabled Children’s Team promises to submit the plan one more time to panel. MomKwake supplies even more information…bordering very very closely upon that same information to which they are not entitled by law.
Here comes April’s Fool…
March 31, 2015 – the TAC committee meets without anyone from the Disabled Children’s Team or Education present. That afternoon their panel was to go to panel once more…and kicker they get an email from their SEN keyworker informing them that Islington wishes to proceed to next to step with the Statutory Assessment for an EHCP. Oh…and despite a promise from the Head of the Disabled Children’s Team that he would call to inform them of the outcome of the panel…not a word.
April’s Fools – Words comes…after three phone calls and as many emails…the panel will authorize £30 per week for support and maybe one or two trips…BENDING the finalization of the EHCP. What part of EDUCATION and CARE are separate does this SECRET panel that contains the Head of Pupil Services for Islington not understand? Yet more of those same lies and bullying that we and PanKwake have had from the very beginning with these people. They have failed to educate, failed to evaluate her autism (three times) and even failed to protect her from bullying. I guess as that Key Stage 1 Coordinator said these government officials believe that…bullying is just a way of life.
While MomKwake and DadKwake are not FOOLS…we told them that this was about our LEGAL right to home educate our child. And that they cannot bully us…or lie…or deceive…and certainly not BREAK CONFIDENTIALITY. We told them to stick their money where the sun don’t shine. We told them that we were withdrawing our requests for both a support package and the Education, Health and Care Plan.
But we are still under attack…our RIGHTS are under attack…PanKwake’s very future hangs in the balance. As part of the assessment process the Disabled Children’s Team put her on the children in need register. We have demanded that since there has never been any allegations of abuse (other than our legal right to home educate) her name be removed. But we have not been given any assurance of that…and we continue to be harassed by education.
PLEASE this is no April’s Fool. All of it is true and we have documents and emails to prove it. Please band with us this #autismawareness Month to put a stop to abuse of power by those bureaucrats who would keep an autistic child from the support she needs or put an end to the home education under which she thrives. This is about rights. Rights of autistic children to the BEST education. And rights of parents to choose for their child what they feel is best and in keeping with their family’s beliefs. It is PanKwake today…but there have been thousands of others…and will be more until we all stand up and say ENOUGH to secret panels controlling monies that are due to disabled children.
PLEASE PanKwake begs you share this post with everyone you know. Spread the word about discrimination and ignorance. As PanKwake says…autism, deal wif it. But she should not have to deal with the rest of this.