In December 2018, my son Oliver was invited to help turn the Christmas lights on in our town. It was fantastic that he was asked and so, for the first time, we all ventured into the hustle and bustle, frenzy of lights, music, stalls and streams of people on the town high street. With so much stimulation, Oliver’s twin brother Harry tried to run into a shop to avoid the crowds and ransack the toy aisles for something to buy. For the first time ever, I was unable to hold him back with me and had to call to Andrew to help. There are a few moments in the life of a special needs parent in which the balance shifts and the future changes forever. That was one such moment for me. The realisation that Harry was now becoming too strong and impulsive for me to guide and keep safe (for example, he will also dash across a road if he sees something on the other side that he wants)
I decided on that evening that I would have to look after my own physical health more and asked other parents in a similar position to me if and how they were preparing for the future with a child that would always need them. Their answers fell into a few categories that I thought would resonate with other parents like me and interest the parents who will never have to consider them.
Oliver is massively into fitness and so reluctantly, I agreed to attend the ‘basefit training’ circuit sessions that he has been raving about. It feels like PE at school and I can’t say that I have been excited to attend the grueling sessions but I can see how the classes will benefit my strength and stability so I am persevering and hoping that this time next year, I will feel the difference (and hopefully look a bit more toned as a beneficial by-product)
Miriam is also looking after her physical health. “I swim a mile most days to be able to physically cope with changing nappies and dealing with the strength of my non-verbal ten-year-old”
Jo “I’m the same as Miriam. This year I learned I need to be in a better position fitness way to cope when Z gets bigger, I joined the gym. Also, all his birthday money Christmas etc I’ve saved as I think but it’s money he may need when he’s older and at the time DLA (disability living allowance) covers what he needs now, maybe they’ll come a time there’ll be no DLA.”
Hayley “This year I really focussed on my physical health because I feel a huge responsibility to be alive as long as possible! In Feb I went from no exercise at all, to 5 hiit sessions a week and I’m running my first ever half marathon in March. I’ve never ran!! For me, it’s not so much the physical strain of looking after River as he’s still pretty small, although carrying him has meant I’m pretty strong. It’s more the fear of not doing everything I can to be around longer because he needs me to be. We can obviously all get hit by illness, but it it’s something I could have avoided by looking after myself I’d never forgive myself. I’m also basically sugar-free which made a huge difference to me and rarely eat junk food. It’s strange how quickly it just becomes a way of life”
Jenni – “Physically I’m struggling to carry my son or prevent him doing things as he is so strong so I’ve just started attending the gym in the hope that it will make me stronger, lose weight and more able to physically handle my son”
Nicki “ I signed up to a weight loss programme in February ‘18 and I’ve lost 2 stone so far, I’m aiming to lose a further 2 stone after Christmas, I want to feel better within myself but a huge reason is being fitter to run after my eldest (6) as she often runs off and she’s so much faster than me! I want to keep her safe.”
Earlier this year I began to realise that I was over thinking and dramatizing a lot in my life. This was manifesting itself in crippling laboured breathing, me taking valuables to bed with me as I was convinced we were going to be burgled in the night and a panic attack at work after I sent too many copies to the printer and managed to convince myself that I would be released from my casual contract. Extreme overreactions are absolutely not like me at all. The next day I saw the doctor and was prescribed anti-anxiety medication to take daily. Years ago, I had to be dragged by my Mum to seek professional help for my depression but this time I didn’t hesitate. My mental health is too important and crucial to the lives of so many others for me to neglect. My boys need me as Harry struggles with the transition into adulthood and I am liaising more with his teachers and outside agencies. Oliver has started at a new school and the change threw him initially resulting in the return of his old anxiety. This time, medication felt like the right and essential thing to do and not a last resort. I am also reading more which I am absolutely loving. A few moments each day of utter escapism into a gripping fictional story line has done wonders for my own mental health.
James agrees that mental health is crucial. “I’m definitely trying to look after myself more. Running, yoga, yes to be healthy but also to reduce stress, be in a better mindset for my boys “
Marc “I’m battling with my mental health. I have counselling and see a psych regularly, I’m off most of my meds now, all the meds for anxiety and depression I’ve stopped taking. The other meds are for pain – physical and through neurological pathways so I have a cocktail to manage my pain. I’m doing a lot to make my life mentally healthy. I’ve stopped doing 72 things and trying to help everyone and anyone. Now I’ll happily offer advice but other than that they need to find support elsewhere. Our home is being made as ‘healthy’ as possible – organised, clutter free, easy to clean. I’ve destroyed 3 black bags full of old paperwork that I just didn’t need but I kept on thinking I needed to file neatly ‘just in case…’”
Nikki – “I have a real fear of the future, I’m currently seeing a counsellor where this is one of my areas I talk about. I think it’s because I can’t plan or control the future and I have a fear of the unknown with being on the spectrum myself. I think more thinking ahead will come as my girls get older, they are currently 3 and 6 and I’ve got no idea about what their future will hold, if they’ll remain in mainstream education or if we’ll need to look at specialist schools, I always do what is in their best interests”
One source of my anxiety was the re-mortgage I have taken out to match the ‘Disabled Facilities Grant’ (DFG) which was allocated to us to provide Harry with his own bedroom and wet room. Harry doesn’t sleep particularly well and now needs his own space for his own personal health. He also needs assistance with washing and sharing a shower cubicle with me or this brother is neither appropriate or dignified for any of us. A wet room will give him the space he needs and make life easier for us all should he need carers in the future.
I was a full-time primary school teacher when I bought our house and it was always my intention to build a two storey extension which I could, in time, convert into separate living for Harry as an adult so that he didn’t have to be placed in assisted accommodation. I now earn less than a quarter of my teaching wage but my determination to keep Harry with me is as strong as ever so I am excited to see the extension come to life for him in 2019. However, the anxiety of increasing my mortgage by such a significant amount has taken its toll on me. Hence, the medication. I am not the only parent to consider the long-term suitability of their home.
Helen “We’re having downstairs facilities built via a DFG for David as he struggles with stairs, will always have profound intellectual disability and he’ll be with us forever. If I had the money I’d move to a cottage in the middle of nowhere, I just want to keep him protected “
Angela “We had an extension built to provide more space and privacy as M grows. I think it’s purely logical to plan for the future”
Gemma “We have been contemplating moving away for some time to Islas favourite place.
It would just be a massive move across country and an upheaval for her brother Billy but it’s way cheaper to buy up there and gives us scope to buy the right place for us knowing Isla will be with us forever. I have also got guardians sorted for if anything happens to me and John, so I know Isla will always be loved and cared for.”
Jenni “We moved to a bigger house with a 6 ft fence round the back so it meant more room and more secure for Roo.”
Marc “We relocated 200 miles away to the middle of rural mid wales so we could afford to buy a home that we will never leave, and the children will own (soon, just legal stuff to do first…).
We are hopefully having the home extended through a DFG for Ben so he has more privacy and dignity (it’s complicated) and the way our house is laid out is very odd and compromises the freedom that Ben enjoys.”
The vast majority of parents with children who have SEND (special educational needs and disabilities) will tell you that full time jobs are pretty much impossible to maintain around the appointments and other considerations that we have. I have blogged in more detail about that in ‘5 challenges of working when your child has additional needs’.
Personally, I have swapped a stable and well-paid career for total flexibility and less stress. It’s a compromise that I never regret but financially I have struggled.
My ex husband and I are also in the process of setting up a specific trust fund for Harry to come into force after we both die. This is a huge consideration and worry for parents like us and I will add some links at the bottom of the blog to the steps we have taken so far.
I’m not the only parent to be making changes to my own life specifically to benefit my children now and when I die.
Marc “ I’m starting a new project that will help my charity LittleBlueCup with its funding meaning I don’t have the constant stress of making sure that keeps going, and hopefully, will pay me an income which will be invested in my children.
I’m planning on building a large log cabin that will outlast my children, but can be run as a fully accessible holiday retreat. We have a huge garden in two sections, this will take over the other section and mean people with physical and/or sensory needs can fully enjoy a country break – accessible wetroom, accessible kitchen, hot tub with hoist, sensory room. Going to take several years of saving hard but it will happen, the income it can generate will pay all of the children’s household bills when we are not here to look after them.”
Steph “For me the way I’m preparing for life ahead is by researching all sorts of ‘careers’ which my girl could do alongside me, as she’s unlikely to be able to work for others or to manage a business herself. The current options are a cattery, a bakery or a cake/chocolate making business”
Marc “ I’m talking to the LA about making plans for unexpected life events. Not only us both dropping dead, but what if we were hospitalised for a few days or even weeks? Ben doesn’t eat or drink for anyone else, or out of the house – he’s never eaten or drunk at school. He would end up in hospital too. The LA need a plan for how they will cope, and amazingly they actually agree. Which makes me happy.”
If you are a parent who has never thought about the implications of life with a special needs child then I hope this has enlightened you into some of the aspects of life that we have to consider. If you are a parent like me, wondering how to plan for a future of life-long parenting then I hope this blog has given you some ideas. Either way, I hope you know that we all adore the children we have been blessed with and that we don’t look on the changes we make as a sacrifice, more adaptions to improve all of our lives.
If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now!
If you enjoyed this blog you may also find these blogs interesting –
What will happen to my son when I die?
A financial plan for my disabled son part 1
Planning for the future; Wills and trusts for disabled children