This article is part of a series about parent’s views and young people’s views of their experiences of neurodiversity and different learning profiles.
Ada (not her real name to protect her and her family’s confidentiality) is the parent of a learner with speech, language and communication difficulties. We asked questions about her experiences and what has helped her the most.
How would you describe your experience as a parent of a child with communication difficulties?
It is a shock to realise how much communication skills affect the learning and the life and wellbeing of your child. I was also upset to realise how difficult it would be to gain the support my child has needed.
I have always felt that I am “winging it” and looking back wish I had grasped earlier on how much there is to know and how much support we would need as a family. I am always feeling like I am potentially missing a huge amount of information that I could benefit from knowing to help my child and it is scary to feel as a parent one is the main advocate for a child. What if I am not agitating for the right things? I still feel I just know too little and if I knew more I could do so much better for my child.
What do you feel about the special educational needs school system in the UK?
In the mainstream education system for neurotypical children it feels like it is all about choosing which school you think is the most suitable for a child out of what often is several options all of which could work well for your child. So it feels hard because there are so many options!
It was scary to discover that, actually, for SEN learners there are few options, if any, that are right for your child where you need quite a bit of specialist support but also have a bright capable child.
Personally, I have been so disappointed that many specialist schools we have seen are so selective in choosing children even where they seemed to us as a family to have the potential to work well for our child. The focus on the problems and challenges in some schools we visited seem to miss the potential and abilities of our child. It was shocking to discover how little provision there is for communication needs and that the only school I could find that could have space for our child was over 80 miles away. I wish I had been able to access reliable information about school options for us much earlier on.
How did you find accessing an education and health care plan?
This was a difficult and a really painful experience that left me feeling really low about our situation. We went all the way through the legal system and yet I felt lucky that we were able to find the money to do this. What happens to those families that cannot afford it or who take on a crazy amount of debt on top of everything else? It is heartbreaking to think how challenging and expensive this is and how much local authorities spend on legal fees trying to limit the support they provide to try and stick within their budgets. It feels so wrong that getting help for your child is so hard. The system relies upon parents going above and beyond what is reasonable for their children. However, we did get there and I would encourage parents to keep going as it is worth it in the end.
What have you found helpful for your child?
We have always made time as a family to speak and communicate and to listen carefully. Speech therapy has been helpful although for us it is less so unless it is fully integrated into school work. When speech therapy and occupational therapy are fully integrated with school work we have seen good progress. Patience is definitely important. Focussing on the child’s interests in school work has been amazing in terms of results and we have seen great progress in areas of high interest which is great.
What has been most helpful for you in this journey?
Meeting other parents on a neurodiversity journey with their kids has been so healing for me. It has really helped me so much and those “SEN” parent friends are like oil on troubled waters for me. Unless I was on this journey I would not believe the crazy things that parents can need to deal with. Even with an EHCP you can’t rely on getting the support you are due, support can be taken away at any time and then you can need to go to court even to ensure the local authority complies with their legal obligations. Even specialist schools don’t always get what your child needs and you need to watch how things are going all the time.
What has been the hardest thing?
The hardest thing is that feeling of loneliness when you feel like you are the only one struggling to do what is best for your kids and yet just don’t always know what that is! Likewise trying to get support or access to schools when that is not easy – it’s so depressing on top of everything else. I find schools do not appear to think about how parents feel when they turn a child down for a place!
However, spending time on facebook groups for SEN has made me see there are parents all over the world with the same struggles and that’s been so reassuring as much as I wish none of us were struggling.
I would definitely tell people not to do this alone even if your only help is online because you can’t get out to meet people. The other hard thing is the lack of understanding in other people and society in general. The level of bullying some kids and parents deal with is crazy even where some neurodiverse kids seem to me to pretty “regular” kids. That’s so sad I just don’t get why we can’t all just accept people as they are.
What are your hopes for the future?
I am really thinking about how to help my child into the workplace and further training when she is older. I want her to do well being independent and making a living for herself and to have the life she wants for herself. I recently met another Mum whose adult son with SEN is doing so well at work and that’s given me a lot of encouragement.
What would you say to other parents of children with speech, language and communication needs?
Get as much speech and language therapy as you can and as early as you can. For me, if there is a significant need for support really at least two sessions a week are needed and then make sure you make a fuss about about the targets for speech therapy and school work to be joined up. Personally, I think that other than for mild needs the therapy needs to be from a qualified therapist not a teaching assistant.
Also, school and therapy provision should provide clear ways the family can support the child. For example, word lists to be sent home and to enable pre-learning of words tied in with school work to make things easier. When kids play together learning how to answer “why are you talking like that?” style questions are key and we have needed school and therapy to help our child with answering that without feeling shame.
A lot of work needs to go into maintaining friendships with kids whose families are supportive of your child as well. The reality is many families are not able to reciprocate with social events perhaps because they feel awkward and don’t understand. It’s horrid to see your child being lonely and that’s why a specialist school for communication can be a good thing I think so your child knows they are not alone in having that difficulty. I try and point out that even really successful people often have had to overcome some kind of challenge whether it was health related or losing a parent at a young age. Everyone has something to deal with.
Parents of children with additional needs work hard. How do you take care of yourself in all of this?
Really the only things I do are to try to combat the feelings of isolation. I try and be in touch and see friends whenever I am able to get cover at home and I try and exercise. Feeling isolated is the worst thing for my mental health but I am really lucky to have lovely friends who are dealing with similar things and being able to celebrate their and their children’s success is so heartening. It always gives me hope for my children.
What would you like to see change?
I would love for neurodiverse learners to be accepted and understood in mainstream schools and colleges and the workplace. I think it would benefit everybody and understanding alone would go a huge way to making our children have better lives.
Huge thanks to Ada for sharing her experiences so honestly with us.
Please check out our resources section for information regarding speech, language and communication needs. If you are searching for the right school for your learner with SLCN we can help you. Do get in touch by calling 020 7193 8407 or by email to firstname.lastname@example.org. You can find out more about our SEN school search services here and read our guide to finding school places for SLCN.