Not better, not worse. Just different.

It wasn’t a decision we made, it just kind of happened. Poss asked and we couldn’t lie. She wanted to know why she was visiting all the doctors. Other kids didn’t have to visit doctors or miss school to go to therapists. Why was she? She wanted to know and we couldn’t lie to her.

After talking to her Paediatrician (the wise woman she is) we told Poss. We explained it was just a different way of thinking. Not better, not worse. Just different. We gave it a name, Aspergers.

We got a book called “All Cats have Aspergers” and another one called “Whoever you are” and we read them together. We kept it age appropriate. We made a book together similar to the cat book, but with pictures of Poss and how it affects her.

She asked some questions, mainly about why she had to go to all those doctors. And that was that. Over time she has asked more and we have answered what we can. We talk about it together and ask the therapists the questions we can’t answer.

Sometimes there are tears, not all of them are mine and not all of them sad.

We didn’t think it was a big deal. Telling the rest of the family and friends was harder. It honestly never occurred to us to NOT tell her, more just when and how.

When we spoke to her Paediatrician that day, she likened it to having asthma or an allergic condition. Of course you would tell your child. They need to know how to manage their environment to ensure they excel in whatever situation they are in and keep themselves safe from harm.

It’s risk management. It’s helping her to know herself. It helps us have honest real conversations with our girl.

That sounded right to me.

A teacher once called our approach irresponsible. Although this is the same teacher that refused to read her files or even be polite to her therapists or Paediatrician as she doesn’t believe Poss has Aspergers. So she doesn’t have a lot of creditability in our household.

We now know that other parents make a different choice. I guess that’s what is right for their kids, their families. But this is what works for us.

I’m curious. Have you told your kids? Would you?

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Comments

  1. Wow it wouldn’t even occur to me not to tell your child. I guess having never been in that situation I can’t say for sure but all the points you raise for telling them make 100% sense to me. I’ve actually already had a conversation with my 5 year old about how some people see and react to the world differently to the way he does but that doesn’t make them naughty or strange, just different (he has a classmate with aspergers). I think your paed is a very wise woman indeed.
    Nee Say recently posted..Parental SupervisionMy Profile

    • Thanks Renee – it’s something that came very naturally to us, but I do respect that others might work differently, for lots of different reasons. But yes, it’s not a bad thing to talk about differences early – all about building tolerance and understanding.

  2. Like Nee, I’m not sure it would occur to me to not tell my child. From the sounds of it you did a fabulous job telling her and explaining it all – especially because it sounds like she’s accepted it.
    I can’t believe that teacher though? Who is she to tell medical health professionals that she doesn’t believe them!?
    Daisy recently posted..The Hunger Games. Of the chocolate variety…My Profile

    • Don’t even go there with the teacher – that’s a post for another day… or maybe a series of posts!
      Thanks Daisy 🙂

  3. Great post Renee! I agree, we too along with Therapist advice decided to tell our Son he has Asperger’s. We felt it was important for him to understand why his mind and body works differently to his peers, and with understanding and awareness there becomes more self acceptance. It also helped him along with his 2 brothers understand why he had to go to Occupational Therapy, Speech therapy, Social skills groups and have regular check ups with our Pediatrician.
    It was also hard for his 2 brother to understand why sometimes we have to do things differently for him, and the greatest book we could have ever read to them was ‘All Cats have Asperger syndrome’, it was one of our staple bedtime books for a while, and I beleive because we’ve addressed it in a very child friendly manner using this book it has helped our family unit function together! P.S. It’s great for Grandparents too;)
    Melissa recently posted..Hello world!My Profile

    • Thanks so much for your comment Mel – sounds like your therapist and our paed are from the same school of thought!

      Yes, if we had other kids, I would imagine we would tell them too.

      And you are right – that book is so helpful. We bought a copy for each of the grandparents, which was a great way to start the conversation.

  4. “she likened it to having asthma or an allergic condition” – what a great way to look at it.
    Like Nee and Daisy, it really is hard to know what you’d do in the same situation. We can sit here now and THINK we know what we’d do, but the reality may be very different.
    That teacher would give me the irriates, that’s for sure!
    x
    Kellie @ Three Li’l Princesses recently posted..Warning! Baby brain may result in foot in mouth diseaseMy Profile

    • Thanks Kellie. You are right – she was a piece of work – that’s only the tip of the iceberg!

      It is easy for us all to comment on it – and at the end of the day, we were able to tell Poss and have her understand as she is high functioning and old enough to have some understanding of it. Would we have still told her if she was younger or not as able to understand? Who knows…

  5. Well, you know how I feel about that teacher!!!
    We always planned to tell Olivia when the time was right, even ordered the cat book to help us when the time came! Liv was different to Poss, her understanding back in what we affectionately call “the aspie days” (as opposed to the now “cancer days!”) was limited and she just didn’t have the ability to process it or rationalize it. Obviously we won’t be talking about Aspergers with her now, since we think it is unlikely she has it, but after her surgery she was so much more able to process and understand things, and ask questions, so we definitely would have told her by now. It’s an important part of Poss’s life, just as cancer is a part of Liv’s, and I can’t imagine not telling her she has cancer. The key is working out when your child is going to be able to process it, but having said that, Olivia has coped better than we ever thought possible, and she does throw us the odd curly cancer question! I’m still just excited that she has the ability to ask questions…never thought I’d see the day!

    • You make a good point Shell. Poss is old enough and she is high functioning enough to understand. She is different and she is the one that feels that and points it out.
      And understanding her diagnosis, gives her a frame of reference. She isn’t a freak, she isn’t a weirdo. She isn’t any better than the other kids either. She is just different.

      And god Shell, Liv is a different kid these days – she is an inspiration to us all! xx

    • Joy O'Conner says:

      I’m really curious to hear your story- or your daughters story! I’ve known something was up with my daughter since she was about 18 mos so we have done a lot of early intervention and when we have good periods it’s like she’s off the spectrum, but they inevitably end and she’s back to her aspie self. She was diagnosed as high functioning autistic, but then diagnosed with aspergers, this year, by her psych. She’s 4 1/2. What did you do with your daughter? Why did Renee say she’s an inspiration?

  6. We do talk about autism with the boys, but they’re not overly interested…
    For me the issue is about how they will perceive their differences. I don’t want them to think that they cant do certain things, or start thinking that the things they can’t do now are not options for them because they have ASD, I don’t want them to think that ASD defines them, I don’t want them to think that they are special (besides in a from my parents eyes way) or that they should accept certain behaviours as a part of who they are…. But I suppose all of that comes down to how you talk about it and how they are handled in their daily lives.
    (Another good book that Poss might like is “different like me” it’s about people with Aspergers who’ve done amazing things)
    oxox
    Hannah recently posted..Easter and Gods great giftsMy Profile

    • We reference it in a very normal, calm manner. I wear glasses because I can’t see properly without them – you see a psychologist so she can help you stay calm.

      She actually notices her differences now and brings them up. She talks about how the other girls won’t play the way she plays (they break the ‘rules’) or how she finds noises unbearable, yet she knows they don’t bother us. It gives her a reasoning and stops her thinking she is a freak (which is what she was being called for a short period at school).

      • Sounds like she’s had an awful time of it…
        I feel like I’m walking around the house saying “Aspergers” over a sneeze….
        I think normal and calm is the way to go… pity thinking about this sort of global development stuff turns me into a nervous wreck… *sigh*
        oxox
        Hannah recently posted..Wordless Wednesday: Outing MyselfMy Profile

        • I love that – over a sneeze!! Yep, some days! Hang in there honey – it goes get easier, it just becomes part of the vocab, part of the norm. xx

  7. We haven’t told Phoebe yet. We are going to until we have something we CAN tell her. But when we do tell her we intend on using the mantra (they have had fab success rates with her in the past and she still chants “Bad Guys Never Win” when ever she gets worried during a movie) “Not a Label, It’s a tool” to give her a little bit of armour against people who would try and use it against her.

    • That’s a great approach Vix – and the mantra is spot on. It’s not a label, certainly not a negative one – it is a tool, to make sure she gets all the support she needs to be the best she can be!

      xx

  8. Love love love this post. We told Annie when she was diagnosed in Prep because she too was asking lots of questions. We used the book all cats have aspergers, she did get upset but mostly because her only experience with autism had been her sister who was far more severe.

    Now we just say some people are like iPads and some people are like desktop computers, both are awesome, they are just different.
    Marita recently posted..1000 mile stareMy Profile

    • Thanks Marita – and I love your analogy, it’s perfect.

      It would have been a difficult experience for Annie – to have seen her sister and not understand where she fits into the spectrum. Lucky she has such awesome parents to help her through it!

  9. Just found your blog. We have a 14 yr old boy with Aspergers who we told when he was diagnosed at 11. He was so relieved that his “weirdness” (his word) had a name and he wasn’t mad or bad or crazy. We have always told gim he runs like a Mac when most of the world seem to prefer Windows – he likes that. We have a 5 yr old girl who is still going through assessments, and so far she hasn’t asked us much, but when she does I will be honest with her too. She understands some of her sensory problems but we are a way from a final diagnosis. How could she cope as well in the world without the knowledge is our reasoning.

  10. Joy O'Conner says:

    We recently told delaney, too ,because she asked who her psych was when she noticed all the appts with her and the OT and our pediatrician and how different they all were. I showed her a video of a teen girl with aspergers talking about it and delaney was quick to point out the things she does too, like worrying about getting sick, and hating loud noises, throwing fits, etc. she was so interested! I’m glad we told her. She has one friend who understands a bit bc she has a brother with autism, too, and that is helpful to some extent. She kind of mothers delaney though and delaney hates that. 😉

    • The mothering is hard! Poss has some gorgeous friends who are all very nurturing and they can sometimes be a bit much for her… but mostly she appreciates their help… it’s an odd balance. So glad she was ok with it all though 🙂

  11. I just found this post 🙂
    I am at the point where I am preparing to sit down with my son and talk about it. He is 7 so the same age as Poss was then, I guess. Like you I think it’s only fair to explain it to them, at their level.
    School has started and the special needs unit seems to be actually now taking him under his wing..
    The paediatrician, who I am seeking to change, spoke to my son about ‘his temperament’ which I thought was a bit odd, indeed.. I have had an email exchange with Kate via Autism OurWords. I am working on something and I would LOVE you to look at it. Our kids are close in age, and I like your approach of things. Making your own book with her own photos is a very good idea!
    Personally, the Cats book does not work for me, we have no cats so Nemo would probably reject it and I think it’s more illustrative for parents or those older kids who already understand their condition a bit better..
    nikki recently posted..understanding asd and adhd : HYPERFOCUS vs perseverationMy Profile

  12. We told Miss 6 when she was diagnosed. We wanted her to understand why she had to leave school early some days, and why she sometimes had trouble making friends and sitting still in class. My now-7 year old has Aspergers and ADHD. I have Aspergers too, so it made the choice easy – I wasn’t diagnosed until adulthood, and always felt out-of-place and alone. I never wanted my girl to go through that – I wanted her to know herself, and how to help herself.
    Jen recently posted..The Disability NetworkMy Profile

  13. My son just got diagnosed with aspergers syndrome like a month ago. He’s 9 years old. For me it was the obvious thing to tell him right away. After all it’s all about him. He was so relieved when he heard it. His exact words where: wow great to know… I had always kind of assumed that I am just not fully functional. Good to know this is a thing and not just me being a broken human being.

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