Here some suggested organisations that offer expert advice on SN.
The thread on AIBU(38 Posts)
has made me cry
How do any of us balance the needs of our child with SN with that of siblings? How do any of us know if we're getting it right?
We won't know until it's too late
Is that the one with the child with DS who has been left behind?
Because of the issues it raises or because of the OP's attitude?
Because I'm convinced that I, and you and other parents with children with disabilities know a lot more how to meet and balance the needs of our children than they do.
Lougle, sorry if my post made you cry. (I was a poster with a sibling with DS, and I said I would have loved a holiday without my sibling). If its any consolation, as an adult I look back and I can see why my parents did what they did and why they always put my sibling's needs first. It was hard to accept as a selfish child/teen. I know my parents did their best, and I'm sure you do too.
I have two DC, neither with any SN, and I feel guilty about not getting the balance right with them.
A couple of years ago, DD1 seemed to be about the same, developmentally, as DD2. Now she seems about the same as DD3. One day, she won't be the same as either of them.
Now, they want to do everything together. One day, DD1 will still want to do everything with them, but she won't be able to cognitively do all that they do.
tbh Lougie - I just muddle along with this parenting thing and try to do the best in each situation.
I don't think anyone knows if they are doing the right thing - just sometimes doing the right thing in that situation.
As for whether we get the balance right - I don't think you ever do. My DPs treated me and DB as equally as they could. We have both turned out well balanced (imo ) - DB with large chips on each of his shoulders.
My parents screwed up my childhood and I never had a sibling with a disability.
I agree with aunt you weigh up the situation at the time and make the best choice from those available to you. Those choice probably would be the best choices for every child, but they are the best 'on balance'.
The future is frightening when you have an especially vulnerable child. I think you just have to try to find ways of coping with that and the desperate worry that comes with it.
I also think that you have to give each child what is valuable to them. Each child is different, regardless of needs. Some children need to be given confidence, some discreet support, some more freedom.
I think that in most things in life we over analyse how fair we are being and try to 'give' equally, whereas realistically, one child might not worry that they can't go on holiday because of a sibling, but be crushed if you didn't turn up at a school event.
God this is heavy for a Sunday night. Got to be up early to take DS2 to hospital for 8. Point in question, DS1 and 3 get to spend the day with dad - both have asked to come to the hospital with me "'cos it's cool" and they love the slide. Can't win
I haven't read the thread in question, though if you link I will go and fume.
Ds1 has been overtaken by dd3. They are still friends and we are a family unit. I would never dream of going on holiday without ds1 . If my other children hate that then I can live with it. They can do what the fuck they like when they have their own homes. Till then it's my house and here we don't leave anyone behind.
Being "fair" is a strange concept. To my mind fairness is not about getting the same it's about getting what you need to get the same chance. This is in my mind a lot a the moment as ds2 could really do with being HE for a few terms, but that wouldn't work as I am already HEing ds1 and he needs 1to1. So ds2 will not get what I consider to be the optimum solution for him so his brother can. Not fair in some ways but it isn't fair that there is no suitable school for ds1 or that he still struggles to make himself understood.
I felt like you at first, lougle; the thread just made me think about how ds' childhood is overshadowed by dd's needs and how there never seems to be enough emotional energy over for him.
But then I thought: sod it all, I am a bloody good parent, I have learnt things from parenting dd that I would never otherwise have learnt, ds benefits from that too, and he benefits from having a sister like dd, I am doing the best I can.
Otoh I would not (unlike the OP on the other thread) judge somebody who goes on a trip abroad with siblings whilst leading child with Downs syndrome and challenging behaviour with doting grandparents- that strikes me as most likely a win-win situation.
When my db was newly adopted, my mother took me and other siblings abroad to give him and my dad settling in time together. It wasn't about leaving someone behind, or not being a family: it was about giving everybody what they needed.
lougle I am a middle child and it was obvious from an early age that my parents had their favourites. SN or not, you just can't get the balance right. we do the best we can and hope it all works out in the end.
We went on a holiday last year and we took ds1 with ASD with us and left ds2 behind. Reading that thread made me realise how weird we are.
Lougle - I have an older brother with cerebral palsy and severe learning disabilities. My parents died before I was 30. They made no provision for him.
I moved him 250 miles to live near me and found supported accommodation for him and a work/training placement.
My parents spoilt him, prioritised him and mollycoddled him. My sister and I were left to fend for ourselves.
BUT, I developed a very strong sense of what is right and wrong, of fairness, of justice and equality from my brother. I was fierce in defending his needs and never scared of 'disability' or difference. He had friends who were wheel chair bound and some who couldn't talk. I took it in my stride. It was all normal. I couldn't understand why people at school would think it was cool or funny to say 'spaz' or 'joey' or any of those other vile words.
It sounds OTT but it made me a much more grounded person growing up knowing not everything and everyone is 'perfect' and the worst thing in the world was not not getting top marks in a spelling test!
Also YOU are not the same as my parents and neither am I. We are aware of the impact a disability may have and we try and accommodate our other children and not brush it under the carpet. Your children will grown up grounded and fair minded.
Fighting for my brothers's provision was bloody good training for statementing too!!
I never know if I'm getting the balance right - trying to balance the needs of 3DC's with SN's AND that of another DC with possible AS...well, I can only surmise that I fail miserably with the balance daily. I try to balance the needs over a month rather than a day!!
I took my eldest to Paris last year, on his own. It was fab. I am going to take all my children away, one by one (although now we are in NZ and skint it is much more likely to be camping ) Last year we took him to Rotorua camping for a couple of nights, whilst the other two were at respite.
I think it is really important to give each child some special me-time AND family time. This applies to holidays too. I want to mix and match our holidays so that some are with all of them and some are with some of them, so that they can do developmentally appropriate things but also spend time together as a family.
I think if you are worried about one child feeling left out then one parent takes away one child is a much better model than whole-family-except-disabled child.
If I went on holiday, it would be with all of them. Purely because if I can even afford a holiday (and it would be a caravan in the UK if I could, and hasn't happened in over 9 years, since my OWN dx and loss of career!), I wouldn't have childcare for any of them!
Thanks, I am reading. Got to be at hospital for 7.30 for DD2's blood treat, but can't seem to sleep.
Lougle....slept? Am awake reading biomed reports of dd
The child on t'other thread was with his grandparents- so he was having family time.
Well it's going to depend entirely on the children concerned and their needs. We left ds1 with his grandparents twice when he was younger because he couldn't cope with going away (he wouldn't eat at all away from home for starters- refused to have anything pass his lips). The younger boys got to do some neurotypical stuff - like go to zoos, or eat in pizza hut, which they can't do when ds1 is around. DS1 incidentally adored staying with his grandparents (still does) so I presume he had a great week.
DS1 now has weekly respite so the younger boys can for example go to the cinema with both of us once in while now, or go ice skating or bowling or something. For ds2's birthday we were able to grab a cake and head to Frankie and Benny's which we couldn't have done if ds1 was with us.
The next proper family holiday will be a Calvert Trust holiday (dunno when as we can't afford it atm) - so completely around ds1's needs. If we had the chance to leave ds1 again (we don't now unfortunately, as we used to leave him with grandparents during term time - his brothers are both well and truly at school now and I wouldn't take them out for a week - grandparents can't manage ds1 for a week in school holidays) then I would happily take his brothers somewhere we can't usually access (ie almost anywhere). Camping or something.
Anyhow I think I'm doing something right as DS2 was recently staggered to find out that people terminate for DS. He wasn't judging, he just couldn't understand why it was necessary. So I figured he must be pretty happy with his lot in life.
I am having to leave my asd teenager with his dad so I cant attend a wedding, the reception is in a pub my ds is 6 foot and can get agressive, he has told me he wants to go so he can get drunk. I also have his asd toddler brother who is going as he can be in his buggy for a bit and if it gets bad we can leave. there is no guilt trip I'm doing the right thing for me ds and the bride.
but that thread was just upsetting and I knew whoever was like us that was reading it woudl be gettign upset and that pissed me off, the O.P was an ass
I have a brother with autism and now a son. I echo everything innapropriatelyemployed says.
Lougle we can only do our best. Ds is 18 now with severe autism (although it was initially described as moderate autism and learning difficulties) we have three children older than him and dd 10 who has ASD too.
I won't pretend that the older three and even little dd haven't missed out because they have because ds's needs dominate but we have done our best with what we could.
My older three are 25, 24 and 19 and they are the most tolerant,compassionate, independent and resourceful young people you could wish to meet. They are generous and empathetic and not in the least bit angry or resentful of ds's or dd's needs or their demands on our time and they have a level of maturity far beyond what you'd expect.
What we have done here is used clubs and activities to give them a break from ds, dh took them on holiday yearly whilst I stayed at home with ds, they had locks on their doors and ds wasn't allowed in their rooms to trash their stuff. One day a month they got one to one time with me whilst dh had all the others and we did something that they enjoyed and I made sure that I noticed their tolerance and understanding and thanked them for it and didn't make them carers to ds so they kept their sibling status.
They have turned out well in spite of ds I think rather than because of him and other than the scars where he attacked them when younger seem to be pretty much unscathed and they adore ds and dd regardless.
I'd say what did take the hit was our marriage as it feels pretty much like we are co parents rather than partners tbh because we don't have the energy to be so attentive to our relationship as we do our children tbh.
We aren't parenting our children so they have the perfect childhood. We're parenting them so they grow up to be the best adults we/they can manage. And the timescale isn't a day, as couthy so wisely says.
Fairness, is determined by what they 'need' not what they (or we) want. Which includes their 'need' to have a sibling whose additional needs have been taken into account: because when we're gone, it's likely they will still love each other.
People say the same things to families with lots of children as they do to families with SN children. So I really like the following article:
Why big families are easier by Matthew Archbold
A woman said to me recently that my five children were very well behaved. Its one of the best things I can hear so I thanked her. Then she asked me how do you do it with so many?
I told her that I dont think Id be a very good parent of one child or two. She didnt believe my answer but honest to goodness, I sometimes think that having many children is easier than just one.
Why big families are easier:
Patience. I never have to teach patience. My children know that I cant drop everything for them if I have a baby in my arms.
Work Ethic. My children have learned to work because there are always chores to do in a small house packed with little messy lunatics. And they all learn quickly that sometimes they have to clean up a mess even though they didnt make it.
Humility. My children have learned its not always their turn. Theyve accepted they cant always get their way because other people have to get their way sometimes. Theyve learned that some children are better at certain things than they are.
Foreign language skills. You can learn a lot of Spanish by watching ten years of Dora the Explorer that you just cant pick up in two. And now with the Diego spin off Im practically fluent.
Laughter. The children have learned to laugh at the insane non sequiturs of younger siblings. Theyve learned that laughing just feels better when seven people are doing it along with you.
Competition. Do I really need to go into this? Everything is a competition in big families. The children compete over who reads faster, who drinks their milk faster, who gets to the bathroom first etc. Everything is a competition and theyre all keeping score.
Balance. The floor of the front room of my home is a minefield of toys and childhood paraphernalia. Just walking through the room requires great skill and balance. Im absolutely convinced my two year old will be a favorite for Gold on the balance beam in the 2016 Olympics. (She might have to lay off the cookies a little but Ill deal with that later.)
Life isnt fair. Sometimes you just give it to the baby because you want a little quiet. Not all the time. But sometimes.
Just say No. Being able to say no may be the most undervalued skill in this world. The need to be liked is pervasive. The need to be cool even more so. Having brothers and sisters teaches children to say no about 143 times a day. Its a good skill.
Praying. They learn that nothing beats praying together as a family.
Nature/Nurture. Having many children has taught me that nature has a lot more to do with who my kids are than nurture. This is helpful, especially when your children misbehave you dont have to feel bad about it. Just say Stupid nature!!! and blame your spouses genes.
Namecalling. You can occasionally call your child by the wrong name and still not be considered a terrible parent. They know who you mean just from your tone. Sometimes if you need something done you can call the wrong name and someone will still show up. That helps.
Spying. My children have learned that they cant get away with anything. I have spies who look a lot like them who are willing to drop the dime on them for anything. Even at school Ive got a child in just about every grade. If they do something Ill hear. That keeps them nervous. And I like keeping my kids a little nervous.
Friendship. The children have many friends. Theyve got girly friends, crying friends, fun loving friends, consoling friends, and crazy friends. And they all have the same last name. And theyll be there forever for each other. No matter what.
Love. I think my children have learned to love because there are others around them to love and who love them. I honestly can think of no better way to teach children to love than siblings.
I realise my post makes no sense I won't be taking my ds to the wedding as he would not be manageable. MareeyaDoleres has a good point we are not aiming for perfection and life isn't fair. I aim to survive each month of uncertainty and the last thing I would worry about is if someof my pics didn't have a 3 children in them if only everything could be photobook perfect but thats not reality. Lougle me and my dh were having a bad evening too and it was like a slap reading that thread but ignorant people are everywhere we have to ignore them.
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