10 Golden Rules of being a Difficult Parent of a child with SEND
- By The Difficult Parent
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- 09 Mar, 2019
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All the things that I would tell myself at the beginning of this journey if I had a time machine and travel back to give myself a pep talk. I will add the additional rules sent to me on Twitter in a new post. This is a personal post. It is all the things that I have learnt to do to get through this sanity intact
10 Golden Rules of being a difficult parent of a child with SEND
1. They NEVER read their own policies. They do not know the SEND Code of Practice 2015
RULE 1: READ
2. You NEED to read policies - because professionals NEVER read their own policies. If you cannot find them online use a Freedom of Information Request.
Rule 2: RESEARCH
3. Always refer to the policy - they won't have read it
Rule 3: REFER to policy and to law.
4. If it not in the policy go back to the SEND Code of Practice 2015 (they will have read neither policy nor CoP)
RULE 4: DON'T EVER GIVE UP Keep digging, you will find what you need
5. If its not in the SEND Code of Practice to back to the law: Children and Families Act 2014; The Chronically Sick and Disabled Persons Act 1970; Equality Act 2010 - please add whats useful to you
RULE 5: BECAUSE ITS THE LAW
6. If they are calling you difficult then you must be doing something right for your child. They are more scared of you than you are of them.
RULE 6: YOU ARE A WARRIOR
7. You are not mistaken, you have entered a surreal Kafka-esque parallel world. Sorry about that, they probably are lying to you.
RULE 7: YOU ARE NOT WRONG YOU THINK IT SOUNDS WRONG THEN IT IS WRONG
8. That's right! You are the only person who read your child's notes / EHCP / file / school report
RULE 8: PREPARE TO WIN, BECAUSE THEY WILL FAIL TO PREPARE
9. ALWAYS let them dig their own grave: ALWAYS use email; NEVER answer the phone. You need PROOF of what was agreed. Otherwise its your word against theirs - and they are the professionals - right?
RULE 9: DONT ANSWER THE PHONE
10. THROW NOTHING AWAY Keep extensive records of letters and emails. Follow up meetings with emails regarding what was said and agreed to. And only ever use THEIR evidence. They can't dispute their own evidence ... Can they?
RULE 10: THROW NOTHING AWAY
RULE 1: READ
2. You NEED to read policies - because professionals NEVER read their own policies. If you cannot find them online use a Freedom of Information Request.
Rule 2: RESEARCH
3. Always refer to the policy - they won't have read it
Rule 3: REFER to policy and to law.
4. If it not in the policy go back to the SEND Code of Practice 2015 (they will have read neither policy nor CoP)
RULE 4: DON'T EVER GIVE UP Keep digging, you will find what you need
5. If its not in the SEND Code of Practice to back to the law: Children and Families Act 2014; The Chronically Sick and Disabled Persons Act 1970; Equality Act 2010 - please add whats useful to you
RULE 5: BECAUSE ITS THE LAW
6. If they are calling you difficult then you must be doing something right for your child. They are more scared of you than you are of them.
RULE 6: YOU ARE A WARRIOR
7. You are not mistaken, you have entered a surreal Kafka-esque parallel world. Sorry about that, they probably are lying to you.
RULE 7: YOU ARE NOT WRONG YOU THINK IT SOUNDS WRONG THEN IT IS WRONG
8. That's right! You are the only person who read your child's notes / EHCP / file / school report
RULE 8: PREPARE TO WIN, BECAUSE THEY WILL FAIL TO PREPARE
9. ALWAYS let them dig their own grave: ALWAYS use email; NEVER answer the phone. You need PROOF of what was agreed. Otherwise its your word against theirs - and they are the professionals - right?
RULE 9: DONT ANSWER THE PHONE
10. THROW NOTHING AWAY Keep extensive records of letters and emails. Follow up meetings with emails regarding what was said and agreed to. And only ever use THEIR evidence. They can't dispute their own evidence ... Can they?
RULE 10: THROW NOTHING AWAY
The Difficult Parent started out as these 10 rules tweeted over 10 weeks on twitter that I started to put out weekly in November 2018. Popular and added to by other parents, the energy and positivity, the support and advice that I got from other SEND parent and SEND professionals on Twitter led to DifficultParent.com.
Again, this started as a blog of my life in mid-January 2019.
Again, this started as a blog of my life in mid-January 2019.
If you thought SEND was bad - the NHS is seemingly prepared to throw away money to private companies
About 3 or 4 times a year we get the euphemistic message 'Parents please note we have put a letter in your child's bag' - its a world away from how a child's death was handled in my child's first school
More of a trial by ordeal than a well organised clearly set out administrative process for moving the care of vulnerable young adults from Haringey's Children's Services to Adult Services. We have been failed at every stage of the process.
Never EVER get on the bus without a camera running if you need the priority wheelchair space
The reality of using a London Bus in the teeming rain on a Sunday afternoon is no joke when the parents of a paraplegic person in a wheelchair clash with the self-entitled buggy-pushing parents of toddlers.
At 3pm today I received some barefaced lies from Haringey Council Adult Social Care in response to a photograph I published online yesterday and the media interest it generated
Haringey SEND Transport are insisting that a 17 year old minibus with no air conditioning is a suitable vehicle to transport my paraplegic son in this heatwave. The appalling conditions inside the minibus inside the bus is something they knew about last summer, yet they have to date done nothing whatsoever provide a suitable minibus this year nor appropriately mitigate the temperatures inside the minibus.The conditions inside the minibus are so bad that they triggered multiple seizures during the heatwave as my son has epilepsy, which they SEND transport department know about and they also know that they are triggered by heat.It is not just son who is impacted: last year we know of one child who died on Haringey SEND Transport in the summer heatwave and another who had seizures.
I am simply asking a question - are we all absolutely certain that the road closure / travel restrictions (commonly know as LTNs) placed on some of the most severely disabled people who are wholly reliant on cars are absolutely necessary
Haringey's road closures exemptions policy for disabled people is not fit for purpose, unduly burdensome and intrusive - it's time to stand up against the pro-LTN lycra-clad cycling bullies
Is the argument for and against exemptions for disabled people in Low Traffic Neighbourhoods really a case of GOOD versus EVIL?
