family (and other people) downplaying my DS's SN

[elliejjtiny]

I have 5 boys, aged 9, 7, 4, 2 and 1.

Brief background:
DS1 has aspergers syndrome and sensory issues
DS2 has Ehlers Danlos syndrome, binocular vision and sensory issues
DS3 has asthma, hearing problems and ehlers danlos syndrome
DS4 has hydrocephalus, cleft lip and palate (now repaired but with ongoing speech/hearing problems), development delay, immature brain and ehlers danlos syndrome. He has had 9 operations in the last 2 years with another 2-4 expected next year.
DS5 has ehlers danlos syndrome and speech delay. I half expect him to be diagnosed with aspergers syndrome when he's older as he is exactly like DS1 was at that age.

I'm just so fed up with the daft comments from people like "why do you need to label them" and "all kids have got special needs these days". I've just spent the afternoon with DH's family. One person shouted at DS3 for not listening, another encouraged DS1 and DS2 to wind each other up and then moaned about their behaviour.

Then I get people moaning about all the "free stuff" that the boys get, like the family fund things, DLA (DS1's barely covers the cost of his nappies and none of the other stuff), DS4's 2 year old nursery funding etc.

One of the worst things is people being "meh" about DS4's operations. He's been through so much and he deserves to have attention and people fussing over him. Instead he just has me in hospital with him while the other children in the bay have both parents and 3 other people each. It's frustrating for me as well. My mil just sighs and says I should be used to him having operations by now and sil says it's not that big a deal, like I shouldn't make a fuss about it. My sister posts on facebook about every cold, new tooth and sleepless night her dc have and gets a load of sympathy comments, far more than I get when DS4 has had some pretty major surgery. The mums on my antenatal thread for DS4 have been great and put up with a lot of my moaning, I just wish mine and Dh's family would be more supportive.

I envy DH his ability to switch off from it all. DS4 has got his next operation on 2nd Feb next year. I will think about it, plan things round it and search the internet for ideas to make things easier for him for the next nearly 2 months. DH will forget about it completely until I remind him the day before. He does care and worry about DS4 but he can switch off in a way that I never seem to be able to.

Goodness me! You have an awful lot on your plate!!!

The thing is, changing these people's behaviour and understanding will take a LOT of work, and you simply don't have the capacity for that. You probably need to focus on your reaction to them and your thoughts about them.

Unfortunately I think you probably need to accept that your world is so far away from theirs that they cannot comprehend it. Their throwaway comments probably stem from that and possibly guilt that they can't. It is easier for them to not hear about the difficulties and play them down. They aren't their children so they have the luxury of denial whilst you have to simply get on with things and bust a gut.

Try and ignore their remarks and ask directly for specific elements of support when you need it without necessarily going into details. If they can become a bit more involved and help it might smooth their path to better understanding!?

Tune out unhelpful comments as much as possible. I have a theory that when some people with "healthy NT dc" see families with children who have a lot going on they look and think that they'd not cope in the same situation. They then either do the "poor you, how do you manage, you must be really special/strong" comments which, while well meaning, don't really help OR they minimise everything to make it seem "not that big a deal". Families can do this too.

My first child, who sadly died in infancy, had an undiagnosed medical condition. He soon dropped off the milestones of other children born at the same time and I found it easier to hang out with mothers of other special needs children who understood and a small group of friends who were supportive.

Without wishing to cast aspersions on all fathers I've found that often it is the mums who take on all the planning, preparation, and the physical and emotional load of dealing with special needs. I've found it easier to do that as I was much happier to research medical information and contact support groups than my late husband, who was still very supportive but not involved in everything in the way that I was. He was also the main earner once I went part time so we needed him to be able to keep going.

My youngest son has EDS3 and I know that this is one of the conditions that, even though it's more recognised now, people just don't get. He's also being investigated for aspergers (oldest ds has many traits but no diagnosis -he's an adult now) and again this is misunderstood still as just being odd, awkward or a parenting issue by many observers.

Please offload here whenever you need to. What I like about these special needs boards is that people understand without long explanations and really know how other parents feel. Be kind to yourself and please don't let yourself feel undermined by unhelpful reactions from family or others.

Thankyou. Especially for the comments that recognise that the boys problems are a lot do deal with. I hear so much of "you're lucky they haven't got cancer/severe learning disabilities/meningitis" that I sometimes wonder if I'm being pathetic. I think I end up sharing too much in my efforts to make people understand.

I agree with star about you or many if us having the capacity to deal with the unhelpfulness of these people! When we are full up dealing with day to day stuff we just dont have room to take on board the ridiculous things thses people say and neither should we have to!

I recommend keeping contact down to a minimum with anyone who doesnt enhance your life in some way and when you do have to spend timewith these people smile and nod, knowing that they dont know jack shit about the reality of your life.

You are definitely not pathetic, you are awesome and your boys are lucky to have you on their side!