School holidays for parents can be a challenge at the best of times. Finding the places, time, money and energy to entertain the children is always a test of the patience and bank balance but when your child has additional needs, this is even harder.
Although Harry has no mobility issues, there are other things that I need to consider when I am thinking about where we can go. He has no sense of danger and can be a flight risk at times, if he gets bored or over stimulated in a place he can have a melt down which is getting harder to manage as he grows, I can’t let him go off on his own over things like obstacle courses as he doesn’t understand what to do without someone at his side and has no depth perception due to having one eye.
Even popping to the shops can be a nightmare for me as he tends to run off to the toys or remote controls section and demand that I buy something (not in the same way as a child who simply wants something. There is little reasoning and explaining with Harry when he is gripped by one of his obsessions). Removing anything from his hands is like trying to disarm a ticking bomb and is incredibly stressful for us all so I prefer not to be in those situations.
Leaving my boys in the car so I can nip into shops is also not possible as I hate leaving Oliver with the responsibility of his brother and due to his anxiety, he won’t let me leave anyway as he is convinced, even if I leave my car keys with him, that I will leave via another exit and not come back (I have never done this and have no idea why he fears it so much)
Having said that, my challenges are nothing compared to other parents. Those whose children need changing places toilets with hoists and can’t visit places that don’t have them in case their child should need to use the toilet (There are only 1128 such toilets in England and when you think there are over 2600 in Wembley stadium alone that’s insane!) Some children require specialised feeding and medication. There are also children crippled with anxiety who cannot leave the house but have siblings who dearly want to.
The school holidays are an exhausting time of meeting everyone’s needs and considering options, risk assessments and managing behaviours 24/7 without the respite of school hours which don’t forget, many children need and fall apart without the routine. As much as we love being with our children during the holidays the realty is that it can be an incredibly difficult time.
Here are seven ways, as suggested by some of my friends with SEND (Special Educational Needs and Disabilities) children, that you as a friend can help to make the 6 weeks (or longer in some places) more enjoyable for everyone!
Invite NT children out
Invite your friends’ neurotypical child around for the day or offer to take them with you on a day out. I have been thrilled in the past when Oliver has been invited to go out with his friend. I’ve provided the admission money, spending money and a packed lunch of course so that he isn’t taking anything other than a car seat and on the occasions that he has felt comfortable enough to go (usually only with my best friend or sister) I have loved knowing that he’s out enjoying himself on a day when I can’t get Harry through the door or when its not appropriate for Harry to go. It also means that we get some 1-1 time with our SEND child without the guilt of excluding the sibling(s).
I loved this idea from Miriam who said that in times of thinning down the toy collection, to consider the items that your friends SEND child may really love even if they are older than the advised age. We work at a developmental level with our children and so the toys that your child outgrew years ago might be the perfect entertainment for our child now. What I would add here though is to make sure that the child doesn’t see them when you drop them off as this can over stimulate them which presents its own challenges. A strategic stealth drop off is always much appreciated (this includes cheese and gin at my house by the way!)
A quick check in!
I’ve already mentioned how hard it is for me to ‘nip’ into a supermarket with Harry. It would mean such a lot if a friend was to text and check that I was ok for the essentials (you know… cheese, gin…) and this was a big one amongst the friends I asked. Even if they didn’t need anything they agreed that it would be lovely to be asked and if they did then it would save such a lot of stress on the part of us and our children for whom ‘nipping’ into a supermarket can often be quite an ordeal.
Come to us
Sometimes, it would be great for friends to visit us. I know that Harry is the most comfortable in his own environment and when I take him to anyone else’s house he always races around the house on the hunt for remote controls to take apart and generally wants to escape and explore. This means that I am constantly on high alert and feel embarrassed and awkward at times when his remote dissecting antics are clearly a little annoying for those who don’t live with it every day. A visit to us every now and then would mean I could relax and actually enjoy the company of my visitors without having to worry constantly.
Be mindful of your words
If you are coming to us and you might have children who would prefer an adventurous day out please be mindful of saying things like “Don’t worry, we can go to the park on the way home”. Thankfully I have never experienced this from my friends but one of the ladies I spoke with for this blog said that it just made her feel like she was stopping her friend and kids from having some fun. I must admit it made me wince to read it and though I’m sure it wasn’t intentional I guess the message here is to know that if we could be out and about having fun more often then we would be, but there are days when its just not possible and those are the days when we need our friends support, understanding and kind words the most.
Accept that we may be late
On the days when we are feeling brave or happy to explore out and about, please remember that we might have had a drama before we even arrive at our destination and to cut us some slack if we are late or even have to cancel entirely with short notice. I have to say that my friends are great with me in this respect and actually its usually my best friend that’s late anyway! I guess drama with kids is pretty universal though.
Ask if we can come along anyway
Don’t write us off for a day out and do ask if we fancy it anyway but don’t be deterred from asking if you here no thanks more often than yes please. I once had a friend ask me if I wanted to go along with her and her family for a day out. She said that she had already looked at the place and thought it looked “Harry proof” (the phrase we use) and to think that she had taken the time to try and see an activity through my eyes was just wonderful.
Being a SEND parent is difficult enough and can feel incredibly isolating day to day. It’s even worse at a time when you are often confined to the familiarity and safety of your own 4 walls while everyone else is out enjoying themselves but little things like these can make a huge difference in terms of supporting our children and our own mental health. Did I mention that gin and cheese help too? Just saying.
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