Friends, family, fans and followers: this one’s for you
If you are reading this blog because you want to know more about how to help a family you know who has a child with special needs, may I take this moment to thank you from the bottom of my heart. We need more people like you who realise that it is not the sole responsibility of the parents to raise this child. It is a shared responsibility.
One of the families who have ‘walked the walk’ with us since the very beginning (shared with permission)
You may have come here because you have a suspicion that a friend’s child may have an undiagnosed condition. You may have just found out that your grandson has a condition you had never heard of. You may have been walking alongside a family who has a child with special needs for a long time but feel like you just don’t know the best way to help them. Whatever your reason, please know that your support makes a huge difference. From where you’re standing, it might look like you don’t serve a purpose in that family’s life and that the issues are far bigger than anything you could ‘fix’ so... what’s the point? But just to know that there is someone else that cares, remembers them and makes an effort to stay in touch means everything.
Rufus’s sister pushing him in his wheelchair at the zoo after our friends gifted us a year’s membership when Rufus was diagnosed with epilepsy.
No one has it easy in this life - we all have peaks and troughs - but special needs families tend to have it harder than most. Whether your connection to them is close or distant, the phrase, ‘I’m so glad we don’t have to deal with all of that, day in day out’, has probably crossed your mind more than once. Don’t feel guilty. We’ve all done it and looked over at someone and thought, ‘Thank goodness that’s not me pushing that wheelchair’. I know I did before Rufus was born. But what if you took a second to think, ‘Imagine if it was me pushing that wheelchair’. Think about what you would need, feel and want and sit with that for a while. That’s your starting point for knowing how to help out. Now don’t assume you can project what you might hypothetically need and present them with those exact things. That could actually really annoy them. This is just a way of getting you to think practically about how you might be able to help them.
The hospital visit in 2018 when we were juggling life with a new baby and Rufus was diagnosed with epilepsy. I will never forget the friend who just sat with us by Rufus’s hospital bed.
Stuff and things
As you spend time with them, look at and listen to their needs. They have way more on their plates than most and probably cover over the cracks pretty well. Likelihood is they are frantically paddling underneath the water to just stay afloat. If they’re struggling to keep up with the washing, tell them you are going to fold their washing and put it away for them. Don’t ask if they would like it done as they will probably say no. Have flowers anonymously delivered, offer to babysit, give them a voucher to get their nails done or have a massage if they’re into that sort of thing. The list goes on. You know them better than I do so you know what will float their boats but I can’t stress this enough: they’re struggling. They might not look like it and they might say, ‘Yeah, things are fine,’ but it’s always harder than it looks. Always. Special needs parents are the worst at treating themselves so think about what would really make them smile and make it happen. Don’t overlook the practical mundane stuff either. That is just as important. If you’re free in the daytime to join them for a three hour hospital appointment, do it. Bring a flask of tea and snacks. You would be a literal angel if you did that.
Acceptance
Two sisters whose brothers share the same condition and understand exactly what it’s like (Credit: Sheri-lee Taylor)
I don’t know at what stage in the journey the family you know are but I do know that acceptance can take years for some people and weeks for others. Don’t assume that because they are several years into being special needs parents that they have accepted the diagnosis and are ready to head into a world of encouraging blogs and positive words from someone like me. They might be utterly turned off by this kind of thing so maybe park that idea for now. They might just want to dwell in the empathetic echo chambers of other special needs parents. That’s absolutely fine. Let them be there as long as they need because they may just need a place to rant, cry and be angry at the world with people who can truly understand what they’re going through.
Do your research
If they’ve only recently become special needs parents then they will soon be bombarded with letters and appointments, they will have to learn a whole new vocabulary and a load of acroynms and abbreviations such as DLA, SEND, EEG etc and it may be overwhelming for them. If you have the time and capacity, learn those things alongside them, offer your help in filling in the forms or point them in the direction of professionals who can do that with them such as Citizens Advice or Contact. Learn everything you can about their child’s diagnosis and begin to look into local support for them, what the Local Authority can offer them, where the best school and nurseries are for them and see if there is a local or national group that they can join up with for more support. Of course, don’t overwhelm them with all of this information but have it in your back pocket ready for when they might need it. Chances are, their brains will be all over the place with sleep deprivation, balancing a million plates and just trying to get through the day.
Long Distancers... I’m looking at you
A care package from a family who just get it.
Just because you live miles away doesn’t mean you can’t be a great source of support, it’s just that yours will probably come in an emotional way rather than a literal shoulder to shoulder way. You are the admirers from afar, the regular reassurers, the encouragers and the cheerleaders. We need to know you still see us and that we matter to you. If the family you know are active on social media then show your support there or if not, send a care package, a card or a letter in the post. I mean, who even does that these days? Suggest meeting up, having them to you house or coming to see them. Us special needs families generally don’t have that great a social life because, logistics. It would mean the world to know that you are considering spending your free time with them, warts, wheelchairs and all.