Parents of kids with special needs and disabilities (SEND) often feel like they are Problem Parents. We frequently have to fight for access to education, health care, or basic services. It is often difficult to be heard and this can mean we have to be pushy or shout loudly to be heard, turning us into Problem Parents! But the majority of us don’t want this. Here Emma Bara, founder of WeCanAccess tells us what turned her into a Problem Parent, and how to avoid parents of special needs kids from being a problem.
Meet Emma – A Problem Parent
I am Emma and my husband, David, and I are co-founders of WeCanAccess. We are SEND parents. We have also become PROBLEM PARENTS – parents who are perceived to be demanding, difficult and annoying. It is a label a lot of SEND parents have but it isn’t something we chose and is not something we want to be
SEND parents don’t want to be Problem Parents
SEND parents are often under a lot of stress. Yes, we know that day to day ANY parent feels a lot of stress. Most parents feel under pressure to ensure their kids stay healthy and happy, that they do well in school and make the right choices socially and educationally, that they develop the right character and attitudes that will serve them well in life.
Now imagine you are having to do that for a child who does not learn like other children or who does not communicate in the same way as other children.
Imagine your child does not enjoy being in a crowd, or cheering loudly for the football team, or they need to eat at very specific times to keep themselves healthy.
The parents of those kids worry that they have coped through sports day at school, that they have had their medicines on time, that they have avoided the bullies at school. Those parents may have to find specialist foods, or prepare food in a certain way; they may have extra laundry to do if their child is not continent or will only wear certain items of clothing; they may have to make careful travel plans whenever they leave the house to accommodate their child’s needs; they may be worried about budgeting for specialist food/ clothing/ equipment/ extra travel costs; they may have numerous clinic appointments to attend which they have to plan around school or their employment; they may be anxious about whether other children will accept their child; they may be anxious about how their child will cope when they die; they may be tired from simply explaining their child’s condition(s) every time they meet someone new.
It is a lot on top of the normal worries of parenting. On top of all of that is navigating education and healthcare systems that may not be designed for you or your child.
Let me give you our own, recent example:
Our latest story
Our daughter, Adi, has multiple disabilities as a result of a malignant brain tumour she was treated for when she was just 2 ½ years old. She is now 13 and a bright and determined young girl. Well, she was until last year. She moved from primary school to secondary school (high school) in September 2021. It was far from us, but it was a specialist school, with small classes and we thought it would be the best school for her needs. She was very excited and looking forward to making friends with other kids like her.
Unfortunately, after just one term things became very difficult.
Breakdown of school placement
She struggled to cope with the journey and found it difficult to join established social groups. She was bullied as a result and began to lose trust in the school staff as they failed to tackle the bullying and keep promises made around learning and social support.
Her anxiety just got too great. Our previously good girl became too distressed to participate in lessons and began to disrupt classes. The calls to collect her from school quickly became more frequent. The school didn’t understand what the issues were or that their actions were making the situation worse. Most importantly, they didn’t listen to us, her parents.
We tried hard to keep in regular touch and let them know how Adi was and made suggestions on things they could do to support her but by May, our daughter was spending more time at home than in school. Now, nearly a year later, she hasn’t returned to school and is missing being with other children and learning new things. We have spent the last year struggling to find a new school, one that might suit her needs better, and to get the local authority to meet their legal duties to support us and help Adi.
Our transition to Problem Parents
As people, we are always respectful and try to be understanding of other people’s situations. My husband is a teacher and knows the pressures facing teachers. I have worked in local authorities and know the bureaucratic and financial restraints many people work under. So, we accepted timelines given to us and went along with plans of action, while in the meantime our daughter’s education was lost and her anxiety increased. She stopped singing and dancing, playing with her favourite toys and talking to her friends. We were unable to give her any answers or certainty that might help.
In January this year, A decision had been made that our daughter should attend a unit attached to a mainstream school, a school that was completely unsuitable for our girl’s needs. It seemed to us that no one had read her information, and certainly no one had consulted with us. Again, no one was listening to us!
So we did the only thing left – we started to make a big fuss. We wrote to our Member of Parliament, and to the director of the Education department. We stopped being polite and started bluntly pointing out the organisation’s incompetence and lack of care as we saw it.
This isn’t what we like to do. This isn’t the people we want to be but we still ended up being “problem parents”. When the local authority staff visited for assessments following our direct and forthright emails, they mentioned that they had heard about us….word gets around! We chuckled politely about it at the time, but in truth we worry what they are saying. We don’t want to be “problem parents”.
We’re not unique
Unfortunately, this is not a unique experience, for us or for other families of SEND children. It is often a battle to access education, healthcare, social services or even leisure activities. Sometimes it is even hard to get family members to accept our children and everyone has opinions on how SEND children should be raised. Trying to get people to hear US and make reasonable adjustments so our kids can access lessons/ services or simply make friends, can be hard. This can make SEND parents defensive. Some are so used to fighting for their child that they will walk into ANY situation ready for a battle. Because of this, many SEND parents can seem angry, difficult to deal with and demanding.
However, we are just parents who are used to searching for hours to find support and help for their child, parents who are used to fighting to get support and help for their child, parents who are tired and stressed and worried about their child’s future, parents who need to know their child can look after themselves when they can’t, parents who need to know their child will be heard when they aren’t around to speak for them.
We know you are busy too
We know that teachers are overworked already, we know that health services never have enough staff or resources, we know that local authority officers operate within strict budget and statutory limits. We appreciate what you have to deal with. That is why we are suggesting you listen to us. By genuinely listening to parents and working with them, you can reduce your workload, improve behaviour and progress in the classroom, reduce the hours spent avoiding, responding to complaint emails or arguing your position on the phone, and ease everyone’s stress.
Make the time to listen
If you listen to us as parents, life is a lot easier for all of us. You will learn things you need to know to better support our children and parents will know they are being heard and their child will be properly supported!
My favourite way of keeping in touch with school is a home-to-school book (or app) – where parents and teachers can write daily updates for one another, is a very effective way of communicating. It is much more effective than trying to explain a situation at the start or end of school, with a row of other parents trying to speak or collect their kids all around you. No one is going to remember what was said in those circumstances. Home-to-school books allow a parent to alert the teacher if the student has a sleepless night, or is very excitable if a big event is coming up. They also allow the teacher to record successes and challenges the pupil has had during the day. Knowing what has happened and how the child is likely to behave when they get home or to school can really help the parents or the teachers, they can modify their activities or approach to suit the child’s mood. This isn’t a replacement for regular meetings though. It is important to get meetings in the diary – for schools these can be prebooked for every term.
For local authorities, giving parents a date on which you will speak to them about their case, and keeping to it, will also help. Even if you have no updates for the parent, keeping your word and speaking to them on the agreed date ensures they do not feel forgotten, and gives confidence that you are acting in their best interests.
Communicate in the best way for the parent
Some parents cannot read, others do not have time to come in for a face to face meeting, some may not have computers and others live their whole life on their phones. By being flexible and contacting a parent in way they can best access, you will not only stand a better chance of keeping in touch, but you immediately build trust by showing that you are willing to work with them from the outset.
Finding compromise
Listening is great but it means nothing if nothing happens. We don’t expect you to implement everything a parent suggests – sometimes suggestions/ requests will not be practical or reasonable – however, you are not going to know best every time either, no matter how experienced or qualified you are. Each child is different, each family’s situation is different, so listening, looking for guidance from parents/ carers on how to best support a child, or finding compromises and solutions together will have much better results than nodding politely and just walking away.
We are not problem parents really
I am not suggesting anything new here, I know this, and there will always be parents who do not want to compromise or talk to you. But most of us do want an easier life, and I am asking you to stop and listen and think a little. You never know what the parent standing in front of you is dealing with on a daily basis. I can promise you, that showing a little bit of understanding and listening goes a long way, and you will find that most Problem Parents aren’t Problem Parents at all!
If you enjoyed this blog
You can find our free course on “how to work with parents” here: WeCanAccess Academy – how to work with parents of children with specific needs
You might like this: https://wecanaccess.com/send-teachers-talk-to-your-parents/ written by childhood special education teacher, Kaydene Wood.
About Emma
Emma Bara is proud parent of two. She and husband, David, set up wecanaccess.com. Their aim is to ensure the world is a more accessible and inclusive place for their kids and others like them.
