Ten tips for surviving the summer holidays with special needs children

     

Three and a half weeks ago my children finished up at school and nursery for 7 weeks holiday. Although I love my children deeply I admit I was worried how we would cope with the pressure of looking after both children without any breaks day or night. Both my children have autism, one has neurofibromatosis and other complex needs, and they are both fully incontinent. One of them is non verbal and very delayed. They both have medical problems and need a high level of supervision and care.

So how do parents like me cope with being mum, entertainer, taxi driver, speech therapist, nurse, occupational therapist and support workers to our children for almost two months without a break?

I may not have completed the holidays yet but here are my top ten tips for survival when the kids are at home all the time:

1. Try and keep some sort of routine in place if at all possible.
I have been getting my children breakfast, dressing them and washing them in the same order as I would on a school day. Once they are fed, changed, dressed and clean I have a much better chance of them settling with toys, or a DVD or an electronic device for ten minutes while I get myself washed and dressed. An uninterrupted shower is a luxury but you would be amazed how you can multitask having a shower while also supervising a child brushing their teeth. Thankfully my two are still young enough to not worry about privacy too much. And I do have the advantage that one can’t tell anyone anyway 🙂

2. Don’t feel you have to go everywhere just because you have been invited or there is something special on.
My children have a habit of waking through the night or getting up at 4 o’clock to start the day. By midday they can be tired, grumpy and very unsociable so I try not to commit to many events and go with how the kids are. Busy noisy places are very difficult for both my children to cope with so I thank people for their invites and say we will come if we can. The stress of feeling we have to go is too much for me and then the children feed off that stress. They need time to transition from one place to another and ideally they need to know where we are going beforehand. My daughters anxiety means that just turning up somewhere we haven’t been before would have her very distressed and confused. I may not be at your event but we still love you and I am grateful you invited me.

3. Only do the essentials of the housework while the kids are at home.
Sometimes we have to move house or do repairs while the children are off but if it can wait, let it wait. Trying to make my house into a show room while my children are at home is fruitless and way too stressful. They need clean clothes, clean plates to eat off, a clean floor to play on and a bathroom that is tidy and useable. When they return to full time education I can clear out their toys, redecorate and give the garage a good clear out. Trying to do these with two children at home with high care needs is asking for a disaster. If you missed the five minutes in the morning when my living room was tidy then I apologise. I tidy up at night enough to find the sofa and floor and put my feet up before falling asleep. By 6 am the train track will be back on the floor again for another day of playing with Thomas. One day I will look back with fondness at these times even if at times the clutter of children seems t be screaming at me to get tidied away.

4. Kids appreciate the simple things.
Theme parks, soft play centres, farm parks and expensive garden toys are all wonderful. But someday the children just want to spend time with you. Only one of my children can kick a ball, but the other can lift it up and walk away with it. We have had so much fun in the garden and in local secure parks with a simple ball. Both my two would also happily play in local parks being pushed on the baby swings for hours and going for walks. My son would flap at the bushes all day if I let him. Few of us can afford to take the children to expensive places all summer so I have been balancing trips out with time at home. We have been blessed so far with wonderful weather so parks have become a firm favourite. We have also loved the fact that the sun has made soft play much more accessible as it means the centres indoors are so much quieter. Some centres have even put on special offers to attract customers during the warm weather. We also found out that children travel free by train locally so we have had some lovely train trips. It hasn’t been about the destination for the children but in fact the journey itself.

5. Make home fun.
My daughter had a nose bleed last week and we had loads of bedding to wash and change. Both my children found it hilarious to watch me put on a duvet cover. So I went with it and made it into a game. My son then found some towels drying on a bannister and dropped them down the stairs. For him it was such a fun game. There really is no point trying to explain how this makes more washing and could cause someone to have an accident. He has no understanding of all that. So I went with the moment and had great fun with some towels. Simple childhood fun. If the train tracks are out I am down on the floor playing and interacting with them. If you can’t beat them…join them!

6. Internet and evening shopping is the way forward.
I am blessed to have a husband and although during the day it often takes two of us just to meet the children’s needs, once asleep it only needs one person at home. So I rejoice in 24 hour supermarkets and online deliveries. Trying to drag two 5 year olds around a supermarket is worse than pulling teeth. And sadly food won’t just appear in my kitchen. So we have adapted to work around it. It may not be our ideal but it is just for the holidays. I never thought before I had children that I would say a supermarket at 10pm was a luxurious break. Believe me, during the holidays it is!

7. Choose your battles.
I do this all year round but more so in the summer. My son will only wear his school jumper so why fight. The days are long enough and the nights too short for me to battle needlessly. If my daughter wants a chocolate spread sandwich for breakfast I rejoice she is eating. If it means I can cook a dinner then they can have some time on electronic devices or some TV. Seven weeks of non stop battles would drive us all crazy.

8. Take help and let your children go to friends houses.
If you have other children in addition to your special needs child and they are old enough to do so, let them have some independence. Children, like adults need social interaction. There is nothing wrong in letting friends have your kids for a short while or letting a family member take one out for the day. The holidays are long so take respite when you can. I fought hard to get my son a few days in a play club for children with additional needs. He needed the break and so did we. I missed him dearly when he was gone but we all benefitted from a few hours apart. If someone can give you a night away from the kids don’t let them change their minds. If you have a partner try and take turns if possible. If you are offered care packages, kids clubs or such like use them as much as you can. You are not a bad parent for needing to be without your children. I still struggle with this but I am slowly getting there.

9. Never be ashamed or embarrassed about taking your children out.
My skin is getting thicker this holiday. I hear comments made about my children all the time, from adults and from other children. The more we are out in public and the more other people are out the more obvious it is how different my children are. It breaks my heart how isolated parents of special needs children feel, especially during the summer months. They feel they can not invite other children around to play, or feel trapped in the house because of their child’s needs or feel excluded. My children have as much right to play as other children. Whatever my children’s difficulties they are still children who want to run around a park, be pushed in swings or go on trains. This summer I have taken them more places than ever before even though their difficulties are more obvious. They need to experience more in life and the world needs to see more children like mine to break down ignorance. Yes, people will be cruel but smile, laugh and perhaps pass ancard explaining your child’s condition. They might not change their views but you would be amazed how much more love there is out there than hate.

10. Keep doing what works.
My son is addicted to you tube videos of life doors opening and closing. If it keeps him occupied and happy then I am happy for him to have some time watching them. He uses photographs from the iPad to communicate his needs in a similar way to how he uses photographs at school. If it works in school then I am keeping that up at home. It keeps things consistent and it allows me to know what he wants, at least some of the time. Likewise we are using the ‘first/then’ strategy to get him to do things he finds more challenging. First shoes on then out in the garden is a good example. For my daughter we found allowing her to eat away from her brother (whose table manners would put anyone off eating) has helped her eating. Likewise at times we use TV and dvd’s to allow us to put a washing on or cook a meal. If it works for you, do it!

Seven weeks is a long time to live off very little sleep, entertain two children and meet their needs at the same time. But half way through we are surviving and having fun doing the strangest of things, like changing beds and tipping out water. It’s about survival. It’s about keeping your sanity. But it is also about enjoying your children whatever their difficulties and challenges. I would love to hear your top tips for surviving the holidays with your special children too.