The Cost of Being an SEN Parent

Recently, I had the honour of joining Cerebra’s new podcast, The Calm in the Complicated, where I shared a brief glimpse into my experience navigating the SEN system. Hosted by Dr Carrie Grant MBE and Dr Samantha Flynn, the podcast explores the realities faced by families of children with additional needs.

The cost of parenting an SEN child

In the first episode, I say that I have “suffered the consequences” of getting my child the education he needs. Carrie insightfully wonders how long that journey took and how much trauma accumulated along the way. Samantha gently adds, “and at what cost.”

I wish I had been there in person, because I would have answered. The cost was huge — and hearing the question asked out loud felt deeply validating.

Mock up of book SENT

I will soon be publishing my debut book, SENT – The Emails I Sent, the Silence That Followed, and the Trauma of the SEN System. In it, I tell the truth about my experience advocating for my autistic son to access the education he needed.

For now, I want to highlight just some of the many costs SEN parent carers quietly carry behind the scenes.

The Financial Cost

Advocating for a child in the SEN system can become incredibly expensive. Many families already face increased day‑to‑day costs: specific foods their autistic child will eat, sensory equipment, clothing that doesn’t irritate, or therapeutic supports that aren’t available through the NHS or education.

On top of this, parents may need to reduce their working hours to attend meetings, complete paperwork, manage school crises, or care for a child who can no longer access education safely. Some leave employment entirely because the demands of the system become incompatible with holding down a career.

These costs matter, but I had accepted them. What I wasn’t prepared for were the costs associated with applying for an EHCP (Education, Health and Care Plan) and the appeal that followed — a process that ultimately led to tribunal. Those costs reached over £6,000. £6,000 I did not have.

We paid for private assessments because the local authority’s assessments downplayed his needs. I paid for SEN training and workshops so I could be fully informed and catch them out when they lied to me. I paid SEN advocates to help write reports because they had better legal knowledge. I paid for an advocate to attend tribunal with me, and for a case manager to take on some of the paperwork when it became too overwhelming.

These were not optional extras. They were the only way to secure the education my child needed.

The Career Cost

Before becoming immersed in advocacy, many parent carers had careers, ambitions, and professional identities they had worked hard to build.

The reality is that the SEN system often demands the equivalent of a full‑time unpaid job. Parents become researchers, administrators, mediators, therapists, case managers, and legal representatives overnight.

Sat outside school, not at work

Phone calls happen during working hours. School exclusions interrupt meetings. Crises erupt without warning. Opportunities begin to disappear because reliability becomes difficult when your child is in distress. I work with many SEN parents who eventually crash and end up on long‑term sick leave — and the reality for them can be bleak.

As a professional myself, I have felt the tension of trying to hold both worlds together: caring deeply for my child while maintaining a business I am passionate about. I am fortunate that I could offer myself the flexibility we all needed. But I also have dreams I can’t see a way to fulfil, because quite frankly I am exhausted and my brain is at capacity. I fear that if new information goes in, the SEN information will fall out — and I’ll never know when I might need that.

The Emotional and Mental Health Cost

I explore this in depth in my new book SENT, where I write about the harm many of us experience and the trauma that follows.

Advocating for your child while repeatedly facing disbelief, delays, silence, or inadequate support changes you. Many SEN parents also find themselves dealing with professionals whose practice is poor, inconsistent, or dismissive — people who should not be responsible for vulnerable children but often are.

It places the nervous system under prolonged stress, and we begin to live in a constant state of hypervigilance — always anticipating the next email, phone call, or crisis.

Many SEN parents experience anxiety, burnout, panic attacks, depression, and trauma responses. It is exhausting.

The Cost to Relationships

The cost spills into marriages, friendships, family dynamics, and even how we see ourselves.

When your energy is constantly consumed by advocacy, there is often very little left over. Relationships can become strained under the pressure. Social lives shrink, and many of us become isolated. I remember feeling deeply unpleasant to be around because I could only talk about one thing — and most of it was rage. When it feels as though your child is on fire and the system is working against you, you cannot simply switch it off for a date night. And that’s assuming you even have people who can safely look after your SEN child in the first place.

The Identity Cost

I really like being nice. I like making cakes, helping out, being a good egg, and being of service to people. I began this journey as a school parent who was liked and appreciated by staff. But over the two years of advocacy, I became “the problem” — labelled as “difficult.” I know this because I have seen emails between professionals describing me as challenging and reporting that I was frustrated. I have sat in meetings and been told I was the cause of everyone’s stress. I have been stonewalled and snubbed. All by the people I had trusted with my children.

I will never fully make sense of that or the impact it has on us. What I do know is that I am deeply uncomfortable with how a system can fundamentally change a person’s identity — and how little choice we have in that transformation.

If this is how you feel, do not accept the labels placed on you. Know who you are, and remind yourself daily. Keep an eye on my book release, as I will be sharing free resources — including affirmations that every SEN parent needs. www.nicolahughes.co.uk/book

What would help?

Although I can’t solve the SEN crisis, I do know what would ease some of the cost burden that SEN parents carry:

• Flexible working arrangements for SEN families. At present, many of us can take a week of unpaid leave — which is neither realistic nor humane.

• Systems that do their job. Fully assessing children’s needs, reporting accurately, and providing timely support would remove the need for parents to fund private assessments.

• Simpler processes. Fewer hoops to jump through, simple forms, and fewer opportunities for families to get lost in the system. In my book, I talk about the “SEND You Mad Form,” which is exactly what one of the legal forms felt like.

• Access to legal knowledge. If the system insists on being adversarial, then at the very least fund parents’ legal training so we can participate on equal footing. (Only half joking — I genuinely requested this in a meeting with a senior official.)

• True partnership. Professionals and parents working together as equal partners rather than adversaries. Parents cannot change the narrative that labels us as “the problem.” Only professionals within the system can do that.

My hope is that by speaking openly, more professionals, schools, services, and policymakers begin to understand what prolonged battles within the system do to families — because no parent should have to carry these costs.

Nicola