How do you Holiday?

It’s late summer as I write this and I know that many families like mine, like yours are reaching the end of their energy reserves. Our children with additional needs more than most require a “village” to raise them. And the support systems of school, clubs, respite seem to become very scarce indeed during the holidays and this is especially true of the long summer break.

Does your child sleep? Can they ever be left unsupervised? If the answer to these questions is “no”, chances are that you have now had weeks of unending alertness and your body and brain have had enough. Not to mention juggling work, finances, extended family who may just add to the chaos. So… what’s to be done?

The first thing I would suggest is to throw out the “should” book. The stories we tell ourselves of what family life “should” look like. In this book, the holidays are so often portrayed as a blissful time with siblings playing happily together, parents watching on with tender smiles. We need to pay attention to what our children and we need – whatever that may look like.

In my case, going away on “holiday” was never an option. The stress of transition, the difficulty in managing medical supplies and the uncertainty of what that holiday might look like meant that going away was absolutely not worth it.

Our three children had very different needs, so we tried to meet them as and when we could. Mostly we stayed home and tried to keep normal daily routine going – that was the easiest way to thrive. Our daughter even had school uniform dresses because she found the change too difficult (I did buy different colours of school dresses for my sake!!). She would often plan lessons and “school” activities as a way of coping with the fact that her routine had been disturbed.

For our youngest son, the holidays usually meant badly needed rest, so he was often in bed much of the time. Anything more ended in tears of exhaustion.

And our eldest thrived in holiday times. He found the routine of school dull, unchallenging and restrictive, so the freedom of the holidays was a relief – IF he was given complete control! And he often found the first couple of weeks very difficult as he managed the change from one environment to the next.

Seemingly small things allowed us to create really happy memories – one summer, we splurged on three boxes of Lego that gave us a wonderful family afternoon. Not much maybe, but it’s a memory all of us carry to this day.

Finding somewhere that feels safe and comfortable for days out, or even half days can be remarkably replenishing. Each year, I would try and save for a year’s pass to Chessington World of Adventures, or Wisley Gardens (those happened to be close and work for us). In fact, we mostly used those for after school picnics, never venturing on the rides, but enjoying a space that felt safe.

Maybe one of the biggest and most challenging “shoulds” that I gave up was the notion that we should stay together as a family unit during holidays. While we did this during the summer, Christmas was the one that felt hardest. But for a number of years, we split the family because it was better for everyone. One child went to their grandparents (sometimes with one parent) and the other two stayed home. This gave everyone a break, and allowed the children to have their very individual needs met. Otherwise, how do you manage one child who cannot leave home, with another who desperately needs to get out?

We need to build a new set of stories I think, to share with each other how holidays can be so that we and future families allow themselves to trust their instincts and holiday in the way that suits them. To that end, I’d love to know how you holiday! Please share some ideas in the comments 🙂


To EHCP or not to EHCP…. that is the question

And a controversial question it is. This post will most likely determine whether you run towards me and Tugboat with a smile on your face, or run screaming in horror. Both are completely appropriate depending on your experience, your circumstances, your beliefs and opinions. I would love comments, but I will not tolerate any aggression (kindness is paramount in everything I do and if I’m to inhabit a corner of the internet, I’m determined that it should be a safe space for all).

The short answer to the question is – it depends. An EHCP will not necessarily be able to provide the accessible education your child needs. For some, it’s essential. For others, a strong relationship with a mainstream school who are committed to true inclusion will render an EHCP irrelevant and sometimes even problematic. For others still, while an EHCP is absolutely necessary, the school your child needs doesn’t exist…

What is an EHCP?

We are hugely fortunate in the UK to stand on the shoulders of disabled people who have fought long and hard for rights, freedoms and legally binding support for our children. This should never be underestimated and it’s profoundly saddening to realise that there is still a need for people to fight for these rights.

In terms of education for children and young people with additional needs and disabilities, this comes in the form of “Education, Health and Care Plans” – legally binding documents that describe the special educational needs of a child and the provision needed to help them meet the outcomes that have been determined.

In theory, it’s a great system. The legislation is clear and the bar for an assessment is, at first glance, very low. There’s a but… there are actually many buts!

When the legislation was put in place, in 2014, resource did not accompany it. The implementation of that legislation is far more complicated than its writing, and local authorities have finite and seemingly decreasing amounts of money to work with. The awful result is that the system works for those who know how to work it. I’m convinced that every child who has an EHCP needs it. But far from every child who needs an EHCP has one.

Should your child need an EHCP, there are resources to help you through the process, and many consultants and private professionals who can guide you through from request to tribunal if needed. If you are in the midst of this process, search online for your local SIAS (SEND information and advice service), and use IPSEA and SOS!SEN for additional support.

At Tugboat, we can provide parent-led support through the EHCP process up to the issue of a final plan, but would signpost you to other services should you need to access the appeals and tribunal system.

Benefits of an EHCP?

There are many reasons why a child with additional needs may need an EHCP and the legislative criteria for an assessment are low. To request an assessment, you must simply prove that:

  1. HAS or MAY HAVE special educational needs or a disability and
  2. MAY REQUIRE additional support through an EHC Plan.

Sounds simple, doesn’t it? Yet in the implementation of the law, things become far messier.

If you are in the midst of this process, search online for your local SIAS (SEND information and advice service), and use IPSEA and SOS!SEN.

An EHCP may or may not be necessary for a mainstream school to put the necessary support in place for your child. However, if your child needs a specialist setting, they will need an EHCP – few if any such schools accept children without them.


As a parent who has had three children with ECHPs, I can say that an EHCP is something of a blessing and a curse. This is a system that allowed my children to access education where they simply could not otherwise. But it’s also one that they have found to be isolating and problematic in various ways.

And… an EHCP has a life of its own. The process of obtaining the initial one is almost always long and traumatic, and this tends to affect the whole family. Once you have an EHCP for your child, this is reviewed annually which can be a significant task.

One of the most heart-breaking stories I hear again and again is that of a family who have obtained an excellent EHCP which describes a child’s needs and the provision required extremely well and is absolutely individualised…. but so much so that no school feels able to meet the needs and families find themselves unable to find a suitable setting.

EHCPs are wonderful and essential to meeting the need of many children. But it’s really important to realise that our children live in a very imperfect world. Even if we are able to create a perfect educational provision, they will eventually leave that and enter the messy society we all know. And transition from EHCP to “nothing” can be brutal…


EHCPs can feel essential for many families, because they provide a legally binding document that in theory can ensure our children’s needs are met. Often, this is a result of breakdown in relationships with the school such that families are left feeling unheard and children become trapped in their additional need and disabilities.

The important thing to take away from this post is that EHCPs are a very necessary part of the SEND system. If your family needs one, you will benefit from support to navigate the process, especially to ensure you keep hold of “family life” in the midst of a stressful system.

However, there is a great deal of support available from schools and other systems for children with additional needs without an EHCP, which is far less spoken of and yet is the only option for the vast majority of our children.

I’d love to know what your experience of EHCPs has been… and maybe more importantly what support your child has had without one. Comment below 🙂


Life and Hope…

One of the most important messages I want to give those of you who find Tugboat, is that life can be good and hope is always worth looking for.

So I’m going to share some of my personal stories on this blog as I go – to give you some very real examples of life with disability and additional need, and how it is possible to find a way to “good”.

Big news for me! I recently became a grandmother! My amazing daughter has complex needs. She needed a special school, and even that didn’t work out. It’s fair to say that she has had some really dark times.

And yet…. at the tender age of 20, she has left home, found herself a rented flat, navigated employment, benefits, household bills AND found the love of her life and had a planned baby!

The new family is doing so well and I’m incredibly proud of them. She is already a remarkable mother, beautifully responsive to her baby’s needs and communicating to nurses, health visitors and social workers like a pro.

Neither of us would have believed this even three years ago – and yet here we are! Hers is really a story of hope fulfilled.