Relatives can be the saviours of special needs families, the safety nets that stop us from falling through into a dark space.
They can provide the respite and practical help that social services may be stretched to offer.
They can become a team of advocates around your child and a barrier against the effects of the ‘system’.
In short they can be amazing and I have many friends with special needs children who are very lucky to have what I consider a big, happy, supportive family full of relatives that step up to the plate.
Then there are those of us who don’t have that. I’m not jealous, but things are a little tougher that’s all.
We’ve all heard the saying “you can choose your friends but not your relatives” which is true but so too is the opposite – You can lose your friends but not your relatives.
I’ve had occasion to walk away from a toxic friend or two who has perhaps said one too many comments that are upsetting or belittling.
Whilst I’m not saying it’s acceptable for a relative to behave like this, it is usually more complicated to deal with.
Un-following them on social media, ignoring texts and omitting them from the Christmas card list is much less easy and far too subtle for family.
Plus the fallout, the collateral damage can be huge.
If you write off a former friend, you may have shared friends in your network to ‘manage’ but ditching a relative is much more complex and can have a domino effect on the whole family.
Family social gatherings, anniversaries, birthdays etc all throw up difficult choices.
To go and face them or decline and in effect write off the rest of the family too.
A couple of years ago I had a humungous argument with my Dad after a stressful week of him and my Stepmother visiting.
They live in another country and make an annual trip to visit us.
It doesn’t reveal the complex realities of living day to day with a severely disabled child.
I understand now that this makes it harder for them to empathise as they are simply clueless to the strain of everyday life.
Throw in my acting as hostess for a week and fireworks were bound to ignite.
In the end, I had bitten my lip so many times to their unthinking comments and questions that my mouth looked like Mick Jagger’s.
Just how crass do you have to be to..
a) Talk about a child as if they are not in the room, and
b) Ask stupid offensive questions about them?
I won’t go into specifics but it brought out the mamma bear in me defending her cub.
I felt vulnerable, angry, disappointed, betrayed and ashamed.
All very hard feelings to deal with whilst also caring for a special needs child.
It was my Mum in the end, the one person who I thought would welcome my estrangement from my Dad, who initiated a ‘truce’.
Like a referee in the boxing ring, she bravely stood between the two people she knows best in the world and putting her own feelings aside healed old wounds and new.
She realised that to maintain a relationship with your family when possible is important.
Two years on and he is learning to be more sympathetic and empathetic to my life and I have been there to listen and support him through some serious health scares.
It’s not perfect our family. None of us are particularly close, there are no family members who offer to care for Lucy and give us a break.
No one other than my husband and I have ever gone to one of her medical appointments.
We are scattered geographically, so we are probably more emotionally distant than other families are with each other.
However they are our relatives, we are bound to each other in ways that are more complex than friendships.
If you can keep yours, even if you have to put up with them, I say it’s worth it in the long run.