What has been one of the most helpful things you’ve ever been told since your child’s diagnosis?
Or what do you wish you knew then that you know now?
Or is there something you found out that really helped you at the time?
I thought I’d compile some of mine
Discounted Bills
It took me a long time to realise that not only can you apply for a council tax reduction if you have a disabled child.. you may also be eligible for extra bins for medical waste etc.
In those early days I was astounded at the amount of cardboard boxes and plastic containers we got through each week. We used to keep going to the tip which was hard with a screaming, angry child, and at the time a very small car.
Obviously these things will vary in different towns/cities/countries, bit it is always worth checking with citizens advice, or even just other parents to make sure your bills are as low as they can be.
After all, raising children like ours isn’t easy especially if you are now unable to work full time or are paying excessive childcare costs. The extra stuff you need to spend money on is surprising. Dribble bibs, tube pads, extra nappies, baby wipes long past “typical nappy age”, car parks at hospitals, and so on.
Same applies for days out… many attractions will offer a carers discount and should be able to tell you what provisions they have made for people with mobility impairments or additional needs.
There’s often a cheaper alternative
I’ve mentioned this example before – a lot of tactile spiky balls and toys to aid development can be bought in £ stores or pet shops much, MUCH cheaper.
It shocks me sometimes the extra cost they can put onto products labelled “special needs”. Same goes for equipment, have a look on social media for second hand special needs equipment.
We got a wheelchair once for £600 which would have been an unaffordable £2400 once. It’s amazing what you can get.
We also got hold of some rare toys we had been wanting for Amy for a long time by a good search on eBay.
Other Special Needs Parents
She doesn’t tolerate a sleep system and often gets tangled in her tubes which is obviously both dangerous and inconvenient in equal measure. I had looked into buying an IV pole because the pump stand we had didn’t solve the issue. SO expensive.
Then, a parent with the same issue told me to buy an “S hook” from a local hardware store. It was £1.99 and usually used for bikes and garage storage. I tell you what.. best £1.99 I ever spent!!
It is amazing what can be achieved when you put your challenges out there. There is always someone out there who has been there, done there, and got the t-shirt and it’s always worth seeking those people out because a small “hack” can transform our lives. I recently advised a friend to use an outdoor seating cushion and tie it to her child’s chair so he doesn’t hurt his knees on his tray table.
A seemingly unusual piece of advice, but a huge money and knee saver!
You don’t have to accept a doctors opinion.
I respect and admire every professional on Amy’s team, however; trained and professional as they are – sometimes parents know best.
Sometimes there’s something in your gut telling you no, that isn’t right for us. It takes a lot of courage and persistence but the best thing we ever did was seek advice elsewhere regarding Amy’s feeding issues.
It took 4 different hospital visits, several admissions and a couple of surgeries and different feeding tubes – but our girl is now digesting her food well and is gaining weight marvellously.
Never doubt yourself. I have a bit of an inferiority complex, and I also want people to work WITH us and like us, so it’s horrible sometimes having to say that you disagree, but we are our child’s leading expert and we need to be heard.
Priority Response
Make sure everyone who needs to know, knows that your child is vulnerable. I had never thought of us as included in this as Amy doesn’t have “life saving” medical intervention as such.
But she does have a nebuliser, feeding pump and suction machine, and in the event of the powercut yes, that could be bad news.
Someone told me to tell our water supplier and our energy (both gas & electric) that we have a vulnerable person in our home so that you are given priority in the event of an emergency.
Charities & Grants
I initially hated the thought of being labelled a “charity case” but the truth is, a lot of the stuff our kids need is expensive. When things are expensive you cut down on luxuries like renovations, holidays, self care treats and so on.
Life is damn expensive at the best of times but currently we are trying to fundraise for a powerpack for the wheelchair and a portable hoist.
This is after having raised money for a special needs bed. In the UK you can apply to Family fund for things like iPads, holiday vouchers, therapeutic hot tubs.
You can apply to New Life for medical equipment/sensory products. Because of these hard working charities, and kind donators, we have been enabled to go on 3 UK weekends away with wheelchair access.
We have funded an iPad which has been instrumental in keeping car journeys and days out as calm as possible. New Life helped fund a PPOD seat so that Amy can have somewhere comfortable to sit instead of being restricted in her wheelchair which is more for postural and practical purposes. Find out what is out there, there are so many charities to help you.
Charities again!
They organise special inclusive events that are accessible to people with a whole variety of different needs. It is a huge boost to your mental health to connect with other families in a similar situation and to have your normal be fully normal and accepted.
Places like this are a real lifeline especially for those who struggle to access the community through fear of judgement or feeling isolated. Where I live there is a SEND group on Facebook where you can talk to others about services in your area. It is a fantastic tool and it makes me wonder how people coped prior to the invention of the internet!
Most of these charities will have both real and online support groups so that you need never feel alone again. Can’t sleep?
One of us will be up and there for you! I love how connected special needs parents are and the community that exists. People are rooting for each other, celebrating every win, and joining in with grief when things aren’t so great.
You can give back whilst also needing help.
Once you’re in a place where you have some (if any!) time on your hands… I’ve loved nothing more than finding voluntary work.
Giving back is a great feeling. Being a carer is hard. Sometimes like me you are totally unable to work.
Committing to something can be difficult. But with the right charity or company, you can do what you can, when you can, and it can be a real boost to your self esteem knowing that you are doing something that is making a difference.
My self worth took a dip when I had to leave work… even though being a carer is actually harder work, it isn’t always perceived as such, which is very frustrating. I recently did a Birthday fundraiser for a charity close to my heart, and I honestly felt happier than I have felt in a long time knowing the difference that money can make. It also helps restore your faith in humanity that other people out there see the need and want to help others.
One thing I knew back then that I know now – is that this all does actually get easier.
Whilst in some ways it gets harder (child getting bigger and harder to carry for example), and new challenges will be thrown your way almost consistently; you become more resilient.
What might have floored you in the early days, won’t even make a dent in your armour this time. (Although some days it can only take a spilt brew to send you over the edge!!). The point is, you’ll get used to things, you’ll start to see patterns emerging, you’ll prepare and pre-empt things better, you’ll learn effectively a whole new language. You’ll acquire this skillset you didn’t even know you were training for the whole time.
You’ll pick yourself up, dust yourself off, and carry on fighting the good fight, because you know that this little person needs you. And you need them.
Discovering Firefly
Finding Firefly early on was a game changer for us. Once Amy got to the age where she would be sitting unaided I felt a lot of grief at not being able to do simple things like put her in a swing at the park, or in a child’s seat in a shopping trolley.
We always got looks when we used it but the comments we got were so positive. People were impressed and amazed that this thing looked non medical and served a useful purpose.
It meant a lot to get a slice of normality, for my kid to be doing stuff other kids got to do.
Obviously as they get bigger that gets harder and though we still use the GoTo and Splashy regularly, I need a bit of extra assistance now. Anyone I meet who is at the start of this journey I can’t wait to tell them about these useful “hacks” to make this all more normal and enjoyable.
Look After Yourself!!
Now I feel like a bit of a hypocrite here because I am still guilty sometimes of not looking after myself properly.
I binge eat convenience food and indulge in all sorts of rubbish habits. However I have now got good at going to the GP when I need to.
It’s a very difficult thing to do because we already have so many appointments and interventions for our children that it’s very easy to put off our own needs in favour of trying to have a quiet life. But it’s so important. Not just for ourselves but for our little ones who need us to bring our A game as much as possible.
I hate the implication that self care is a little coffee with a friend now and then, or a walk in the countryside. The reality is yes, we definitely do need all of those things, BUT it doesn’t detract from the fact that sometimes you’re going to feel completely overwhelmed and you’re going to want to scream into a pillow dramatically shouting WHY MEEE.
Just because you got your nails done, or you read a book a week for 3 months doesn’t mean you should feel amazing. I think an important way to look after yourself is to be forgiving to yourself and allow yourself to feel whatever emotions you feel.
You can’t be mindful all of the time. You can’t meditate every day. Sometimes self care is actually just doing whatever it is you need to do to get through the day and get to sleep at night. I think too much emphasis is placed on depression and how you can “fix” it with these simple acts.
I think our lives are too complex for that and whilst we do live in the moment as much as we can, worry, and stressful events are also inevitable and we need to be realistic and not expect too much of ourselves.
I probably could go on and on. There is a lot I wish I had known in the early days.
I wish I had worked harder to get to the GP to look after my own health needs. I wish I had realised that needing respite doesn’t mean I’m a bad parent.
I wish I hadn’t isolated myself so much at the start because I was drained and fed up. I don’t spend my days regretting things because we go through life surviving the best way we can, but I do sometimes reflect on those days and think how much easier they could have been if I had known certain things.
I almost wish I’d been assigned a mentor to help me through those days, someone who has been there already and can relate to my situation. For so long I felt like we were the only people in the world going through what we did, but we weren’t at all.