On the June 27 in Scotland a school bell rang at 2pm and right then and there the rope was cut and my boat set sail.

Summer holidays to me are like being on a ship out at sea alone with my children who both have significant additional support needs. 

The rope tying us to shore was thick and secure and made sure my children were safe and grounded. We bobbed up and down at times with situations at school or at home but we were safely secured to shore with professional support and school staff working with us. 

But then the rope was cut as that bell rang and off we floated. 

No professionals waving goodbye. No school to give us respite and to keep routine. No school lunches to help financially. No teachers to provide stability to long and confusing days. Just us. Out at sea. All alone. 

The first few days seem fine as we suddenly find freedom in waking to our own schedule (4am is their natural schedule so it would seem!) and wearing our own clothes (which at times is nothing!). We are still close enough to shore to see other ships and watch as others have parties on board or sail close together in grand social vessels. Some ships had even set sail in advance to far flung places with sun and sea and entertainment.

But we are drifting away from everyone as the tide takes us in a different direction. What begins as a novelty at being just us soon turns into serious isolation. The children become self-absorbed and lose what little social skills they had gained being at school and I struggle to remain calm. 

We have some calm days where the water becomes a sensory experience and in the heat of the day we enjoy splashing each other and laughing. We learn simple and inexpensive entertainment like drawing and playing with cards. We dig out books and brush the dust off of them. We tidy our ship and even rearrange a few things here and there. But inside we are lonely. 

We hear of other ships passing our way. They come tentatively close by but see my children flapping, lining up and not waving back and so they sail on by to other ships quickly. The inclusion and understanding taught in the school long forgotten now they are no longer in the classroom and out at sea. Even faces my children remember well from school sail by as if they had never heard my children's names before. 

We hit some storms and dark days. Days when my son won't stop screaming or having seizures and we suddenly find ourselves with no support because the port called 'school' is closed. One of them refuses to eat and drink and we can't even find a calm ten minutes to call for help to CAMHS. When we finally do the person who was helping is apparently 'on holiday' presumably out at sea herself but in a much more pleasant place than we are. It's like no one even knows our location anymore. 

The darkness thickens and we try to re-establish calm with visual, social stories and lots of reassurance. After three weeks the children have reached that place where they can no longer remember playtime, maths, P.E or homework. They convince themselves they are lost out at sea forever. 

Eventually I see a lighthouse. There is uniform in the shops and stationary supplies once again. I can make a visual with days to count down and each day that lighthouse draws ever closer. We may actually make it back to shore safe? Who knows?


Are you feeling lost at sea? Are you struggling with your kids in a storm? 

There are ways to have some sort of rope attached to port and remain calm throughout summer. It is all too easy to become isolated and in danger when there is no structure in sight and no respite. 

Don't set sail alone. 

Meet up with other families at soft play or swimming.

Stay in touch with family. 

Look out for events in your area.

If you need access to changing places toilets search for where they are and plan ahead. 

Use assistance at airports and support at centers of attraction like theme parks and aquariums. 

Utilise local parks and country walks. 

Search on 'days out with the kids' and explore somewhere even if it is a struggle. 

Check out your local library!

Visit charity shops and pottery painting places.

Try the beach. 

Rediscover your garden.

Go swimming or ten-pin bowling.

My time at sea is almost over for another year and I am looking forward to being attached to harbor for a period of time. We have done a few things but mostly we have struggled. Can I throw you a rope though and pull you through too? 

I hope your journey is less lonely, less isolating and less fraught with storms as mine has been. 

Read more of Miriam's blogs here