Children break up from school, the summer yawns ahead of them, a freedom and also a gnawing sense of emptiness and a lack of structure, a structure which children - and especially children with special needs - so desperately need.
The parents can feel a sense of dread - how do we occupy them for 5 to 6 weeks? For some children who go to private special needs schools it is 8 weeks! How do we work at the same time? How do we get some holiday and rest ourselves? Parents are often already feeling exhausted by the end of the school year which has already been a marathon of negotiation amongst many such marathons.
The first few weeks of the summer holiday sees (mainly mums) rushing around to various activities. By week 4 they just hang on in there waiting for term time to start. If the family is lucky enough to have a 2 week holiday, the first few days are often a time of negotiating being together by family members not used to spending so much time together. Arguments are common.
Add into the mix, children with additional needs and the summer is even more complex. I was talking to my son's (Eric) teacher the other day. Eric has complex needs, hates change to routine, hates holidays and does not want to do anything other than play on his Xbox. Negotiating what we as a family want to do is a minefield, because even though he is now 15, he cannot be safely left on his own. Where we go, he goes. This he hates and makes it as challenging as possible.
When he was younger many of our holidays together were in a field, in a caravan, in the rain because this was all we could afford. I can no longer think about a caravan holiday without internally shuddering. Peaceful, it never was. It was a battle. A maelstrom of temper tantrums, shouting and drama played out in front of the other campers. It felt like an endurance test but the alternative of just staying at home did not feel like a better option.
Lack of routine over the summer is difficult if routine makes you feel safe. Also, Eric and many others find learning challenging. Take 5 weeks off altogether and they are starting back at square one in September - everything has been forgotten. The autumn term is spent relearning all that has been forgotten - and is usually a term of not learning as they are so stressed returning that complete chaos for both home and school ensues until at least November!
School have recognised that this dilemma is common with students from their school. They are supporting us by trying to get the students to plan what they would like to do, activities, outings anything other than being confined to home. This is a slow process met with opposition from Eric- ".... why can't I just be left on the games machine all summer, other children my age are just left alone...gaming...?"
I suppose that I make life harder, because I do not believe that children should just be on games machines all the time. I do believe that they should actually experience life first hand rather than from behind a console or an iPod. They should live, not just exist vicariously through others' pursuits. Socialisation is positive and enriching. The more sociable they are, the more skilled they become at interacting with others. This is especially important if a child has autism - they need to be able to exist and interact in life, as life will not bend to accommodate them. They are the ones that must adapt.
I am therefore trying to plan activities that Eric will enjoy/tolerate but that also suits the family as a whole. I will accept that holidays are a time of change and adjustment. I will take it a day at a time and not expect too much. This way I can hopefully enjoy the moment, and grasp the good when it happens ...and send him to my sister's for the week whilst I look after hers!! Divide and rule! Happy holidays!!
HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.
We'd love to hear your stories. To blog for the section, please email firstname.lastname@example.org with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email email@example.com, again with the subject line 'EveryBody'.
Join in the conversation with #HPEveryBody on Twitter and Instagram.