Other people's opinions on parenting sn children

[2boysnamedR]

I don't know why but everything that everyone says to me gets my back up and insults me.

My friends latest topic is pushing ds out if his comfort zone. I'm all for this in small steps that he can cope with within his limits. I'm being told I am being negative and setting him to fail as that's what I expect of him. But he is dyspraxic. The whole point of being dyspraxic is that it limits some of your abilities in some ways or you would be adverage nt person. Before I have been told I will make him have asd if I treat him like he has asd ( that was what I though was wrong before his dx). But I don't believe that as your born that way - again I find that irritating

What's wrong with saying "it's ok to be dyspraxic? It's ok your not the best at balance or writing or any motor control stuff" but your good at xyz. Improve motor skills of course but its never going to be fantastic.

Like all he needs is more encouragement and I could normalise him. I don't want to normalise him because its not curable and that attitude to me makes me think its not ok for him to be who he is. Like if I shout at him enough to try harder his muscle proteins will correct and his brain will re wire

But everything most people say gets me on the defense these days. I find that I can't tolerate talking to anyone about my ds as everyone says something that gets my back up. I avoid talking about his condition now not because I'm ashamed but because people just don't agree with me.

I guess I am seeing a lot of asd in myself - or everyone is wrong but I am right. Or everyone as I suspect is totally ignorant to sn. I am going to fall out with all my friends at this rate.

I admit I do force my ds to do things he's never tried before, against his preference as I have found provided I have VERY carefully set up the experience, chosen it after huge consideration and prepped in advance, he'll often surprise himself and get a huge confident boost from doing it and then come home and obsessively start drawing and writing about the experience.

BUT The amount of planning this takes means I can't just push him into a new experience at whim and to meet someone elses convenience.

I hate that the most. When someone seems to think I should MAKE ds do something because actually, THEY want him to do it to meet their own need i.e. deviate from a plan, change a time/restaurant/activity etc.

zzz My mum's all time classic to me, during that period when he was being assessed for ASD, was 'oh well, if you don't get on with your dil when he grows up, you'll enjoy the peace and quiet' (she has serious issues about mums of boys). It is my all time, favourite WTF moment.

Best wtf moment for us was mil while dd2 was being assessed for autism quote she's highly intelligent youlsee next month dd was diagnosed with autism and cognitive impairment

oh yes, trying new things is good. but as you say in a planned way.

Not just forcing things that you know don't work.

Absolutely. I am his parent and his welfare is my responsibility. Just like any other parents I have to decide when he is ready to try new things, what they are, and just like any other parent it is MY JOB to do a risk assessment before each new experience. That assessment is of the physical dangers but also the mental ones and the likeliness of the new situation being a conduit to furthering development or hindering it.

I'm sorry that my risk assessment for my child is not the same as other people's risk assessments for theirs. My child has Special Needs, which is pretty much exactly what that means.

I think there's a big difference between forcing an issue , that you know in your heart not going to work , than encouraging them to try new things and experiences , some they like and enjoy and others they may well hate , there Human like the rest of us with our own likes and dislikes .
As an adult very few people are going to make you do something you really don't feel comfortable doing , why should it be any different for our children . We try new thing some we continue with cause we enjoy them , others we never do again . , some we even dislike at one stage but given time have tried again and enjoyed.
Life in itself is an experience , it's what we decide to make of it. The good and the bad , cause life doesn't always go to plan .

Those who said that we need to develop a rhino hide are so right - that's probably one of the first things that parents of DCs with SN could usefully use!

It's not something anyone trains you for, but I could have done with a little rehearsal/practice at foreseeing dire situations /deflecting inane comments /list of useful phrases at the ready - etc . What I could do with at the moment is some acting tuition: the best expression to put on my face when DS does something awful in full view of the parent who is most insensitive and critical of him.......any suggestions? All gratefully received.

After visiting a ss this morning and working myself up for a visit to my ds's pediatrician - this thread basically sums up how i feel about people at the moment.

my mother and sister do exactly the same thing when they visit - proceed to shout words at him in an attempt to repeat them - and when he makes a vague sounding nanny word , my mums gloating of "see see, he just needs time", wants to make me scream.

My sisters little girl just turned 1 and she thinks nothing of calling me up and saying"listen to this"- cue "hello aunty".

it takes all my strength not to well up. I have a 5 year old that doesn't even say mum properly yet. Again, makes me feel like taking my boys and moving somewhere remote.

You can put on a 'thanks for understanding' face. It's a hard one to pull when they clearly aren't being, but sometimes, just sometimes, thanking people for the behaviour and attitudes they 'ought' to be displaying can really help.

Families are by far the worst for this, in my experience anyway.

DD came out of school with a 'I bumped my head' sticker on, I was asking her about it in front of 'D'sis.

I asked DD where it happened, DD of course pointed to her head.

Sis jumped up and said 'see, that's how mature she is, my DD would have told you where she was'

I don't get what she meant at all, but the opportunity to prove a point is always grabbed with both hands.

Lesley

My mother makes a point of telling me how nice it is when DNs call her

My own DD is verbal, but has very little interest in the phone. She doesn't even react when it rings.

Other people can take their opinions and fuck off with them.

I stopped caring about being polite years ago.

Tbh I think sometimes family members feel like their noises are out of joint. The bottom line for me is DS's needs and welfare come first. He is so important to me, more important to me than them. Family dramas and game playing come way down the list now. It must hurt. I do try to show tolerance though whilst inwardly not giving a shit

Coming from a long line of "quirky", I'm relieved that my family are completely on board and very supportive. There was one visit, though, that ended in us sending my parents a gift of a supermarket voucher (DS1 turned the freezer off) and a new address book (DS2 shredded theirs)! It would have been ignorant not to!

MIL takes the boys as they are, too, though she doesn't always completely understand and doesn't get that, if a situation develops (which can happen very quickly) and I need to switch my attention from her to one of them, that she's not going to help me to avert a meltdown or explosion or something else, equally messy and unpleasant, by continuing to talk at me.

As both my parents died when my child was very young , not really had this problem, partners parents don't live near and have never been really interested.
Remember when my child was young my sister and I taken my child and my niece to park , my son was climbing on some piece of equipment , she spent whole time hoovering over him , he did fall cried picked himself up and after quick cuddle went back to what he was doing , he was use to falling , so had learnt how to deal with this in his own head .
She was why didn't you stop him from going on it , you knew he was going to fall . My answer to her was yes , we all fall something , but need to learn how to deal with things and move on . She never question my judgement again.

Oh Gawd yes the talking at you. Simultaneously nodding whilst dealing with a nuclear fallout! I don't think I will ever develop the thick skin though. When people look at him the wrong way, it hurts. I don't think that will ever go away for me. I look like a stroppy mare though so people prob can't tell lol

Do hate way iPad changes words , should reread what I've written sometimes .

Thank you all. As always the voice of reason. I think it's my friends inability to accept that my child's abilities are limited along with the rest of the world and his dog.

I like the quote the whole point of being special needs is the your needs are special

Thick skin isn't a talent of mine but it will no doubt toughen up. My eldest is gifted academically and very popular boy ( he is the whole package of smugness).

When confronted on my little ones dyspraxia I might try to deflect the conversation back to my eldest and ask if the parents think their kids will be such high achievers if they pushed them to study harder.

Then we are all back on the universal playing field of " look my kids better than yours".

I'll try that face soon, StarlightMckenzie - a helpful suggestion, thanks (that one hadn't occurred to me before, as I am usually too busy dying of embarrassment and feeling judged or pitied by all these supermums with their brilliant NT offspring).

Does anyone else feel that their DC's SN have made them - (personally, not DCs) - much more socially isolated? I find that this is a major consequence, and that we just look like too much hard work for their DCs, so (at best) DS becomes kind of invisible to them; or (at worst) a spectacle of how not to behave.

First of all, please forgive me if I haven't read all the responses yet - I will as soon as this is posted (but with current "goings on", if I don't say what is in my mind, I'll forget it).

What your friend is saying is absolute rubbish.

Let me expand... when DS was a tyke, I saw MANY markers of ASD in him, but downplayed/dismissed them and blamed myself, as I was the primary carer for a boy 4 years his senior who had ASD and I figured I must be treating the boys the same, and DS was learning from C...

It took me the better part of 3 years of DS no longer being around C, but with NT peers, to finally grasp that this was not learned behaviour, but it was who he is.

With that in mind, at 15, DS is now a self taught lightning fast typist (but does not type in the standard fashion - he has a very dominant hand, and types with all the fingers of that hand and one finger on the other) but can barely print. He uses a computer for note-taking and assignments at school, but has actually found a hobby that baffles me. He has learned to paint miniature figures. He NEVER would have submitted to "therapy", but happily sits for hours working on his models... and his fine motor skills have improved.

At 6' tall, he still looks like a sock full of soup - his muscle tone and hypermobile joints won't magically go away, but he has learned to ride a bicycle, and frequently rides to school by choice (instead of taking public transit).

All I can really say is that you are in my thoughts - there will always be those who believe they know all the answers, but have NEVER walked a step in your shoes. How you approach (or avoid) that is your own choice, but never let anyone have you believe that you are doing less than the very best for your boys.

Those who matter know differently.

Found this thread a little late but I have come to observe in my very nearly four years of SEN parenting, that wider family, Grandparents, cousins etc can often be most annoying whilst they think they are trying to be helpful. My son has DS and a spikey profile, so socially he is a dreamboat but he is largely pre verbal and still in nappies. His cognitive ability is about half his chronological age.
Various irritating comments have been, he'll soon catch up ( er, really, can't he just be different), I'd potty train him if I were you ( really, you know more than consultant urologist?!) is he trying to say more ( dear God, he tries all the time bless him), that blue badge is handy ( I have a love/hate relationship with that badge and what it represents, but yes it's useful)

I have come to realise that no one knows him better than me and following a near second his father and sisters. Now I feel more confident and say, yes, I've considered that but the Paediatrician and I know that won't happen yet/work/be appropriate yet.
I give no more emotional energy to them and their daft comments than that, I've too much to do and think about without pulling them along with me!
You really need to keep yourself emotionally strong and if that means giving them short shrift, so be it. I have become much more assertive since I've become my son's advocate.