“The Silent Casualty”

This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.

LWAAS 3d book cover

About these ads
This entry was posted in asd, aspergers, autism and tagged , , , , , . Bookmark the permalink.

36 Responses to “The Silent Casualty”

  1. I can definitely relate to your feelings on this and struggle with it on a daily basis. My two older neurotypical children have had to adjust to so many things their friends have never even had to consider. My oldest is almost 15 and she has been one of the major reasons I have not had a mental breakdown. I’m being pretty dramatic there but honestly she takes on so many of the tasks of taking care of him, most of the time without me even having to ask. I know it isn’t easy on her, but she has shown a level of maturity and responsibility that I didn’t develop until my early 20’s. As for my older son, I felt so bad today when he wanted to invite two of his friends over, but his brother was having stomach issues and was having meltdowns (yes, plural, ugh) and I didn’t want extra people in the house to not only witness the drama, but possibly add to it. As much as their dad and I try to make up for the difficulty of their situation, it isn’t always possible.

  2. stephstwogirls says:

    Made me cry and laugh again. I’ve posted about the ‘sibling issue’ myself before now too, and I probably still worry more about the life my eldest NT girl is getting. It’s so tough knowing when to make the right decisions, and not putting too much pressure on them to be mature and ‘understand’.
    Would love to get our two older ones together – match made in heaven ;) maybe not, but they’d love to know someone else understands how it is….!

  3. Lisa says:

    You really hit the nail on the head there..i am forever explaining to my nt daughter why she can’t have the playstation on as my son is watching special agent oso for the umpteenth time that day. I do feel bad sometimes when she asks if we can go to softplay places and i have to say no. But we do try to do special things like take her to the cinema if we can get someone to watch our son. she is a little star and tries to play with him and teach him to talk and i heard her singing to him the other day.

  4. M says:

    I like to think that because of my autistic son, his sibling will be one of those children who grow up with a deeper understanding and empathy that could only have come about because of his autistic brother.
    Certainly when i grew up , the numbers of children that i had in my class with additional needs was low. In fact i cant remember one. And as a result learning to come to terms with the fact my child has a disability was such a foreign concept that i barely functioned much at all when he was diagnosed. But in that situation you realise what’s important, and clarity does come. It takes time and i feel like for our family its an evolving process. I no longer think having my child achieve academic success is a barometer for happiness. I no longer have silly lists like the house needs to be clean on Sundays, and all the washing done by the end of the week. I no longer think its important my children have impeccable manners and are the type of children i could take anywhere. Instead we all as parents pretty much change our whole perception of what happiness really is. My point is we essentially follow the same journey that our NT children will also take in acceptance, only they will have the advantage of developing these wonderful traits early, and carry them through their life.

    Now i look at my NT child and i think his tolerance, patience and empathy for people with additional needs will positively impact his life.
    So, maybe that’s his life plan and he will as a result (I’m sure) do great things. With the rise of autism, we will no doubt create a wonderful generation of patient , empathetic , kind and considerate human beings, where disability will not be the defining quality of the person.

    • B's Dad says:

      Thank you for this thoughtful response. Everything you’ve said here rings true, from the way our priorities change to the ability of our children to accept and embrace difference. Thanks.

  5. V says:

    There are many days that I feel the same way with my youngest. She is learning at a very early age about how different her brother is from other kids. It stinks some days when we are out and he is losing it and all she can do is look on and worry. I do however see it as a good thing as well. Because she is growing up with him she at 3 years old is already shows so much compassion to other kids and adults who are different be it autism or other issues. Its going to be hard as she grows up but I sincerely hope that while sometimes its hard to understand that she gains a better sense of compassion to others.

    • B's Dad says:

      Thanks for this. We’re on holiday this week and several times, B has had some seriously cringe worthy moments in public. Top of the list is probably the screaming fit he had when he went in one of those inflatable balls that bob around on the water. Not while he was in (he’s done it before and loves it) but when he had to come out. He refused, until the assistant had to climb into the (now deflated) plastic ball and wrestle him out.
      As I stood watching helplessly, along with a small gathering audience, I began to wish a huge hole would open up and swallow me.
      His brother, though, didn’t bat an eyelid and, once he was out, carried on as if nothing had happened. Oh to be able to be that chilled about things!

  6. Loved reading your post, and it made me smile for all the loving, unsung heroic kids that our NT kids are…. They’ve got far, far more to teach us in terms of their outstanding qualities than we could ever hope to learn alone. Thank you for celebrating the little children in (all) our lives who surpass many an adult in maturity and selflessness. Thank you, for, once again, showin me how special and blessed we all are.
    Take Care!

  7. Neil N says:

    I relate to this one as well. Very well put. I try to make special one-on-one time for my NT daughter where I can, but we also talk openly with her about our family dynamic. I am resolute in my belief that our experience with autism makes us a tighter knit family and better, more understanding individuals.

    • B's Dad says:

      When we’re not trying to kill each other I also have moments when I let myself think, ‘We’re alright, really’. And life’s never boring! Thanks for sharing.

  8. angelina258 says:

    I am a sibling of an autistic brother. I blog about my experiences as a big sister and as a behavioral therapist for autistic kids. I wrote a post about siblings a few weeks ago. You can read it here http://theautismonion.com/2012/08/06/siblings/

  9. Hannah says:

    I hope this doesn’t sound dismissive of the impact of B’s autism, and I certainly don’t mean it be, but you wrote a few weeks ago about the woman who said something like ‘my boys were just the same’ – of her (neurotypical) boys – and I think there’s a similar point here. Don’t beat yourself up – all that you say you expect of your older boy I could say apply to my (older) daughter. She is always expected to be good and do the right thing, while her apparently naturally more disobedient (but NT all the same) brother gets away with that which she would not, as I try to pick the battles which really matter (like staying on the pavement) or just try for a slightly easier life than would happen if I was strictly fair about sharing all toys etc. I suspect many older siblings (and perhaps especially big sisters of little brothers?) would recognise the expectations that you worry are as a result of you having to focus on B due to his autism. Yes, as the older sibling it may not seem very fair, but I suspect that B’s brother would still think you expected more of him even if B wasn’t autistic, as B would still be the younger one who is less responsible/understands less/is more tired out and grumpy than his older example setting brother.

  10. Al says:

    I understand what Hannah is saying. I have all the same guilts about my 8 year old, but I know other 8 year old children who have 3 or 4 younger siblings and their life is probably limited as much as my son’s with his one, interesting sibling!! We mostly manage the situation by separating for half days, so that older boy gets to do more age appropriate stuff (or just gets to do stuff without lots of mayhem going on around him). We did this on holiday with the understanding that he would have to fit in with his brother’s difficulties on activities which we did as a family, but we sneaked him our for activities that we knew my younger son wouldn’t cope with. Not an ideal situation really, but they were both happy with it and on the times when it was me stuck in the caravan with my younger son, I realised that he was actually feeling happy and secure playing with his toys in peace and quiet! Once or twice, I may even have thought I had the better deal !!!

    • B's Dad says:

      Thanks Hannah, thanks Al.
      I think there’s some truth in what you say, and I appreciate your supportive comments. I was an only child, so the whole sibling thing is unfamiliar to me and perhaps has an influence on how I see things.
      I do, however, feel that my son’s experiences are compromised beyond what is the norm. I feel sometimes tht he is ‘short-changed’ in his relationship with his brother. A horrible expression I know, but what I mean is that, for all his compromises, he doesn’t get the sort of relationship a typical 7 year old would have with a typical 5 year old. It’s like his baby brother never stopped being his baby brother.
      Our experience is less pronounced than that of some families we know. They would definitely say that the impact on the siblings is beyond what is typical in a family with more than one child.
      But as I said above, they would also agree that their children develop strengths and qualities as a result of these situations.

      • Mum2twoboys says:

        Thanks, I do agree with you. We are finding solutions but it’s hard to think how things should be. Your boys’ age gap is the same as my two and that gap should have closed considerably by now. Only it hasn’t. Looking forward to hearing how your don gets on back at school. I know we have a challenging week ahead!

  11. Zoë says:

    I came here from Special Needs Jungle. This one hits home! My eldest, now 12, has autism and used to be a lot like your son. My youngest, 7, although very clever and at mainstream school, has many Asperger’s features. The middle child, 9, has always felt herself put-upon. When they were younger I genuinely did have to ask her to watch her younger sister, because I was running after the eldest making sure he didn’t electrocute himself or whatever :-/ But she is growing to be a lovely girl, with a wicked sense of humour and tremendous empathy. I wouldn’t change a hair on any of their heads.

    I wrote about our recent holiday – which still always revolves around the needs of the one with autism, despite his having grown-up an awful lot – on my blog last week: http://justzoejustlife.wordpress.com/2012/08/19/autism-and-camping-welcome-to-my-world/

  12. Lee Morgan says:

    Hi this has really made me think about my eldest son although there is 8 yrs difference the same thing is still happening to him especially the part about him having to be expected to have endless patience and understanding, when I all too often find myself running out of it. How true this is and I realise so unfair so thank-you for letting me know that I shouldnt do this to my son who is most of the time better than I am at understanding my son. All of this is so true but your eldest son like mine will become a better person for it anyway because he will relate to others with a disability in a kind way unlike people who have never experienced or befriended someone with a disability. Your eldest son will be like mine a much better person in life than he would without his little brother.

  13. Pingback: I Was A Casualty | Thriving With Autism.com

  14. Hopester77 says:

    God, I’ve just sat here and shed a tear reading your article, as it bought back so many memories of my childhood. (Don’t worry – I’m pregnant – I also cry at anything with fluffy-wuffy puppies or kittens in at the minute.)

    Anyway, my younger brother had severe behavioural issues as a child, which I suspect these days would probably be diagnosed as some form as autism.

    Growing up, it helped that I was the older child, and a girl, so I implicitly knew that more was expected of me. It wasn’t really until I was a teenager that I realised that my parents’ had to invest so much more in my brother than me.

    I did come to resent it, particularly when I was aged 14-17. If you’d asked me at the time, I’d have complained about specific incidents. Like, when I wasn’t allowed to go on a canoeing trip with my youth club, because the instructors wouldn’t take my brother due to his unpredictable behaviour. But of course, it was really the whole situation that upset me.

    Mum and Dad went through a phase of trying to do things separately with me occasionally. Not special treats or anything, just going for a bike ride or a cup of tea at a cafe. But I remember each one of those times as a special occasion and feeling special. Nothing was said aloud to acknowledge that I’d had to sacrifice some things, but it was said implicitly. Children can be very black and white (I was) and I needed justice! These trips made me feel loved and acknowledged. It was difficult for my parents to say or do more because they rightly didn’t want to demonise my brother.

    You’re obviously thinking about these issues and I think that’s half the battle for B’s brother. I didn’t need equal treatment or attention from my parents, I just needed a little something, just for me, every so often.

    The longer term implications for me have mostly been positive. The negative is that in my early twenties I sometimes found it difficult to judge when other people were behaving unreasonably because I was so used to unreasonable behaviour! I did get better at this fairly quickly though. I sometimes also put others’ needs ahead of mine, when it wasn’t appropriate. However, I was also very independent. I left home at eighteen and had none of the qualms or struggles about managing on my own that many of my peers did. I had a couple of crisis in my twenties, which I think I weathered because I was used to adversity!

    More importantly, my relationship with my brother is good. I don’t look back on my childhood with resentment. No one has a perfect upbringing and it’s the non-perfect stuff that helps you cope with real life. My father passed away a few years ago and when I was recently married, I didn’t have to think twice about who would give me away. My brother did a fantastic job on the day and made a lovely speech. He said that when he was little, I could always explain and teach him things in a way that he understood, when no one else could. I had no idea that I he had felt like this about our relationship as children. So, anyway, it can be tough at the time, but it worked out for the best in the end for us.

    • B's Dad says:

      Now it’s me with a tear in my eye (don’t tell anyone!) and I don’t have the excuse of being pregnant! This moved me and gave me hope. Thank you so much for taking the time to post it. All the best to you and your baby.

  15. Pingback: We’re All Casualties. « Parenting Is Overrated

  16. Pingback: About the siblings… « Herding Cats

  17. A says:

    I have just come across this post after finding your link on TES… I have laughed and cried my way through it and, though I have never blogged before in my life, wanted to share…

    I grew up with a younger brother (3 years younger) who was diagnosed with Asperger’s Syndrome aged 12. We had our fair share of autism-related behaviour issues, like you have yours. Like your eldest son, I didn’t care about the diagnosis and to me, he was still my brother. That meant that I still wouldn’t let him get away with things just because he “had AS”! It was difficult for me to develop my understanding of autism, but I got more interested in the reasons for his behaviour as I got older, and now am a special needs teacher. I definitely don’t think I would be where I am without my brother.

    I have become better over the years at dealing with his behaviour (even though I still forget his needs in the moment sometimes – he is still just my brother to me – it’s not like at work!), and I understand that my parents only ever wanted the best for both of us. I never felt neglected because of my brother. I think the essential thing to remember here is that to treat two people fairly (ie: give them the same opportunity) is not to treat them the same.

    I do not think of my brother as an annoyance, or an embarrassment (Okay, except maybe when I bought my new boyfriend home to meet the family and L hastily dragged him off into the depths of his computer room to be quizzed on his knowledge of the engine sizes of every Formula 1 car known to man… he did say he liked him though, and I know L wouldn’t lie!), or a barrier to my relationship with my parents (in fact I think we are close because we had to unite to support him through tough times, and to talk about our coping mechanisms after a difficult day!)

    I think that having my brother has defined me as a person in the ways I am most proud of. I am compassionate and understanding, I try not to judge a book by it’s cover, I know disability does not mean lack of ability, I make a point of standing up for those more vulnerable than me and I appreciate diversity. I hope your oldest feels the same as he grows up.

    A

    • B's Dad says:

      Thank you so much for this comment (and sorry for the delay in replying). I had a lump in my throat reading it and feel grateful that you shared these inspiring words. You should blog.

  18. So well put…I sometimes wonder the same. When my autistic son has a good day he gets lots of praise and rewarded with prizes and yet when his non autistic brother is good most of the time – gets very little in terms of praise / rewards because that is what we expect of him. And it is so hard for us as parents to even try to make it more balanced because we find that we are simply exhausted just by managing and trying to stay one step ahead of our autistic son to minimise problems/dangers/meltdowns etc. thank you for a great post – very thought provoking. x

    • B's Dad says:

      Thanks. In my experience as a teacher I’ve noticed that kids readily accept that behaviour they regularly display can be more challenging for others to manage. They understand that the child’s achievement is being rewarded rather than the actual behaviour. If that makes sense.

      • thebeesleybuzz says:

        that’s good to know. Our middle son is actually so patient as he does seem to realise that his autistic brother struggles with turn taking, waiting etc. and I’m so grateful to him for that. I just hope we are doing the right things for them both. thank you x

  19. This has made me cry because I have been there. My 4 year old fraternal twins are so different. They are both on the spectrum, but Trent has classic autism and Scott has a very mild form PDD-NOS. The boys were recently invited to their first real birthday party. “real” meaning someone else’s kid besides cousins. I left Trent with my mother and took Scott to the party. I felt horrible about even thinking about doing this; however, the party was at an outdoor park with a steep ditch and creek. Scott had taken dance/tumbling class with the little boy who had the party. Trent really didn’t even know any different, but the little boy kept asking Scott “where’s your twin brother?”. Scott kept telling him Trent was naughty. I assume he heard me talking about how he would run off if he came to the party. During the party, I was so happy for Scotty to be able to have SO much fun with his new friend, but saddened at the realization that this was not to be the only time I’ll have to exclude Trent.

    • B's Dad says:

      I feel your pain. But it seems obvious to me that you are doing the best by both children. Thanks for sharing your comments on my blog- I’ve really enjoyed reading them.

  20. Mark says:

    I have just started reading your blogs and have found them really helpful and insightful. I have 3 sons. A my 12 Year old stepson and C my 4 1/2 Year old son both have Autisim. C’s twin does not have Autisim and can understand what you said about your 7 year old. My 4 1/2 year old B is an amazing boy who does so much for his Twin without realizing I think and is the most caring wonderful boy who takes A’s and C’s meltdowns so well and like you I feel so guilty that most of the time B does not get enough of my time that he deserves as there is always something going on with A and C. I know at only 4 1/2 B does not understand Austisim but I am sure he knows there is something different with his brothers but at the moment gets on with I hope that continues as they are so close and it has helped C in his developlment. My wife and myself are so lucky to have 3 lovely boys and I hope that B knows that his Dad thinks he is a superstar like his brothers even though he does not get the attention he derserves from me.

  21. Andrew Blitman says:

    Hey, there’s light at the end of the tunnel!

    Here’s some advice based on my experiences with autism: http://thewrittenblit.com/2012/09/28/my-life-decoded-one-year-later/

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s