reaching out to parents of disabled children

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there was a thread a while back talking about how isolating it can be to be the parent of disabled child.

I vowed I would reach out to a woman at my rugby club whose older son is autistic. I don't know her all that well. I know her husband and even her son better because she always worked with her younger son's age group while he worked with my son's age group (the age group of his elder son). We would occasionally chat, but I thought I could do a little more.

That now won't happen. She's just been put into a hospice with an inoperable brain tumour.I feel absolutely devastated for her, for her family. Obviously it's not appropriate now to reach out to her on a personal level -as this is time for her to be with her family and existing friends - though at the club level we will do what we can. My club is awesome.

Her sons are 5 and 7. I just can't believe this.

Wow. That is really shockingly terrible news.

I'm really upset by this. Feel a teensy bit guilty I hadn't done more - not knowing now if she did feel isolated. I knew she was unwell and had been feeling I should do something, but I've been quite ill myself - off work, etc.

I don't know what her family is going to do. That poor guy. Two kids. One with what I would - in a totally amateur fashion - call medium functioning autism. And life can be so complicated in London. Those poor kids. And I can't imagine what it must be like knowing you're dying with young kids who still need you so much.

I sometimes miss things in ways that get others angry. But to me, you know her and want to see her, would it not be appropriate to reach out? If not to her directly, by offering something to her family and letting how she's doing come up naturally in the conversation and asking the family member whether they are staying with her at the hospice and that you'd be glad for a chance to sit with her or something like that. Nothing pushy or for you, more about offering to help ease her aloneness if that's an issue or relieve a family member that she's got companionship while they do something with the kids. Or if you'd want to offer to take the kids somewhere. That's what I'd do anyway, and again, people often find me annoying for missing social conventions. But in this situation, even if they decline, they'd know you're there later if they want to reach out. Just a thought.

A friend of ours just suffered a terrible loss and made an amusing song about all the stuff people are doing that he wishes they would stop, and all the stuff he would prefer them to do instead. Helped me IMMENSELY as I am clueless how to reach out.

So, part of this type of situation is that people don't know what to ask for, and if you can do that for them it helps. My friend said that instead of "What can I do" he'd prefer "I'm going to be in the neighborhood, can I stop by?" (Since his situation involved a sudden death, he doesn't really have specific needs - but I would guess that you could add "I'd love to bring you a meal if you'd like one - what kind of food do you like? (or what's your favorite restaurant) You don't have to do that, but if you want to, it can be appropriate (our school makes "meal chains" for families dealing with illness all the time - maybe your rugby club could set one up? Basically, it's a calendar where different people sign up to take a meal on different days.)

Other than that, just letting people know you care can really help. Just send them a text or an email saying they are in your thoughts.

Oh we'll be doing stuff. One of my best friends is in touch with the family. I'm going to text her husband this morning as I know him and to tell her I'm thinking of her. We'll make an approach through her in the first instance. People will offer to babysit (not me right now, I'm a sniffling mess - they don't need my cold). But it's not appropriate for me to go by and visit with her.

There will be food, flowers, I wouldn't be surprised if there's money raised if that helps. People will do their best to keep her husband and kids with the rugby club - the boy with autism is fine where he is now, but we're developing a programme for kids with learning disabilities. My club operates a lot like a church in many ways - a beer drinking, swearing, muddy church.

Oh dear God. Nightmare scenario.

:brokenhearticon:

Don't stop holding out that hand-- even though you're a woman in a marriage that's gone by the boards. People will say nasty things about your intentions-- f**k 'EM.

Honey that man is going to need all the understanding hands he can get. Those kids are going to need all the understanding hands they can get.

It is 100% not too late.

I'll be praying. Will that be OK????

One of our coaches is a photographer. He doesn't like to do portraits as he professionally photographs interiors! (But I actually think he's pretty good.) I was wondering about asking him - her kids are so small it would be nice to have some pictures. I hope she feels she looks good enough to do that.

I'll also do a card on Sunday and get all the kids to sign - in my age group should go down fine. In her age group I assume about just over half the kids can sign their names, but it will still be cute.

An appropriate card isn't immediately apparent. She's not going to 'get well'.

Maybe a more subtle wording for "thank you for being part of my life"? Not sure what that would be though.

One of our coaches is a photographer. He doesn't like to do portraits as he professionally photographs interiors! (But I actually think he's pretty good.) I was wondering about asking him - her kids are so small it would be nice to have some pictures. I hope she feels she looks good enough to do that.

I'll also do a card on Sunday and get all the kids to sign - in my age group should go down fine. In her age group I assume about just over half the kids can sign their names, but it will still be cute.

An appropriate card isn't immediately apparent. She's not going to 'get well'.