Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Spectrummy

with 29 comments

Spectrummy adj. 1. Having an autism spectrum disorder.  2. About, or related to the autism spectrum.

Usage:

1. Is your son developmentally delayed?  Nope, but I’m pretty sure he’s spectrummy.

2. Are you an Aspie?  No, I’m just a spectrummy mummy.

Prior to last year, I’d only met one person diagnosed with autism.  He was a teenager, non-verbal and struggling to process all the sensory input of the chaotic world around him.  As a friend of his sister, a couple of years younger than him, all I saw was the faraway look in his eyes, the panic when we entered the room.  He would cover his ears, close his eyes and rock and scream in the corner.  His sister never mentioned his disability, so neither did I.  I feel sad about that now.  That was my first introduction  to classic, or Kanner’s autism.

A few years ago I read “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, and I got my first insight into Asperger’s Syndrome.  Now, I don’t consider myself that much of a literal person, but bear with me as I tell you that this became my exact understanding of AS.  The main character hated to be touched, so that was my exact interpretation- people with AS always hate to be touched and avoid human contact.  And they hate loud noises and cover their ears all the time.  Right.  Or you know, wrong- as I turned out to be.

How we came to view Pudding as being on the autism spectrum is a whole other story for another time.  Suffice to say, just a year ago I didn’t know there was a spectrum.  My take on autism was made up of the above, with the usual dash of Rain Man thrown in.  Please.  So, if like I was back then you are unfamiliar with the notion of an autism spectrum, allow me to make it a little clearer.  Sorry if you already know all this.  Some of us are still catching up, okay?

Okay.  So we have Kanner’s or classic autism at one ‘end’ and Asperger’s Syndrome at the other, right?  Well, not really.  It isn’t so much a sliding scale (though I did think this for a while).  Both have impairments with social interaction, communication and pretend play, as do people with other diagnoses on the autism spectrum, such as Rett’s Syndrome, Childhood Disintegrative Disorder, and PDD-NOS (Pervasive Development Disorder Not Otherwise Specified).  There are other things in common, such as sensory processing difficulties, difficulty making eye contact, repetitive movements, difficulties with transitions, fixations or special interests.  There are terms used like high and low-functioning, but the more you discover about autism, the less useful they appear to be.  Even amongst each sub-type of autism, there is such diversity, such variances in strengths and weaknesses.  When it comes to young children, this gets even more messy.  We now know that the brain continues to develop and make new connections for far longer than was previously believed.  The non-verbal child at 3 may receive an entirely different diagnosis just a couple of years later.  Some interventions even claim to spur development in adults.  So all the diagnostic criteria starts getting less useful, and ‘spectrummy’ just seems to fit.

So while a year ago I had little experience or knowledge of the autism spectrum, these days it is clearer to me.  I am a spectrummy mummy.  One time we were at the playground and Pudding was on her favourite swing.  I saw the little girl in the next swing had a familiar faraway gaze in her eyes, and a tell-tale flap with her arms.  Her daddy was crouched in front of her using the sign for ‘more’.  I asked him how old she was.  He didn’t turn to look at me, but said she was 3.  I told him mine was almost the same age (at the time).  Then he glanced over at me for just a second before his eyes were back on his girl.  “She isn’t typically developing, she has autism.”  It was supposed to keep me quiet.  It didn’t.  I told him Pudding was also on the spectrum.  Then we chatted.  His daughter had PDD-NOS.  She wasn’t talking at that time, but they had started to learn sign language and now she was using gestures.  We talked about school.  All the time though, he was watching his daughter, checking she was okay, waiting for her to need him.  That was the first time I understood my second meaning of spectrummy.  All around us at that playground were other parents chatting away, sharing anecdotes about their kids, drinking coffee, being social.  The spectrummy parents weren’t.  There was a reason why that father wouldn’t look at me, was avoiding conversation and was world-weary of the inevitable comparison between his child and another of the same age.

When a child is diagnosed, a spectrummy parent is born.  There is no more sitting on the sidelines watching your kid play.  You are right there, encouraging it, sharing, joining in, facilitating.  What is the point of hearing another parent talk about their child’s development?  Yours is on a different schedule, running an alternative race.  How can you make small-talk?  What if the kid needs me?  What if I miss an opportunity to engage?  To help them interact with another child?  What if I miss the time when those beautiful eyes turn right on me and smile?

Funny how even the most social of us can manage to tune the rest of the world out, to avoid eye contact, to stop communicating with anyone less important.  Every spectrummy child has a spectrummy parent.  I wouldn’t want to be anything but a spectrummy mummy.

Advertisements

Written by Spectrummy Mummy

September 10, 2010 at 12:25 pm

29 Responses

Subscribe to comments with RSS.

  1. I really enjoyed reading this!
    It was so beautifully written, I’m definitely coming back to your blog 🙂
    Fiona

    fiona2107

    July 27, 2010 at 2:02 am

  2. I liked it too. It’s interesting because I wrote a whole post similar to this, but not nearly as good and trashed it. LOL

    Well done.!

    Laura

    September 11, 2010 at 7:15 pm

    • Thanks Laura- I think there is always going to be some overlap in blogworld as we’re sharing similar experiences. Thanks for stopping by!

      spectrummymummy

      September 11, 2010 at 9:13 pm

  3. Ditto on the blog! I have google reader updating me on all your new posts.

    Candie

    September 11, 2010 at 8:00 pm

  4. fantastic as always. I have lived that playground story a million times it seems. You illustrated it so perfectly. I’ll never be the mom on the bench drinking coffee and texting my friends, but you know what? that’s ok. I like having you as my spectrummy mummy blogging friend!
    alysia

    akbutler

    September 12, 2010 at 7:19 am

    • Thanks Alysia, great having you as a blogging friend too. We can have a virtual coffee in a virtual playground and then blog about how our kids are doing in their different ways (which is frequently the same)!

      spectrummymummy

      September 12, 2010 at 7:43 am

  5. […] Spectrummymummy said all of this much better…  find it here… […]

  6. This made me cry. Thank you.

    J.

    September 15, 2010 at 10:25 am

  7. thank you for this. I’m still feeling like i’m alone, (especially at the park) it’s nice to read someone who is dealing with the same things as me.

    Janice Delong

    September 30, 2010 at 4:47 pm

    • Thank you for commenting. I know it feels like it, but I promise you aren’t alone, we’re all here for each other.

      spectrummymummy

      September 30, 2010 at 5:10 pm

  8. I enjoyed the whole thing, but especially near the end where you talk about being isolated from other parents and not having time for small talk because of being so focused on catching or facilitating important moments for a special child. It’s the story of my life, and I’m a better person for it. You’ve put it all beautifully. Thank you.

    Diane

    October 1, 2010 at 9:42 am

  9. Awesome blog! My nt daughter calls me a “helicopter mom” because I “hover.” Unfortunately for her I developed the hovering habit with her older and younger Aspie brothers with her caught in between. For me, in part, it was a proactive attempt to redirect inappropriate behavior and stem criticism of which I received alot. I think that this evolution of understanding your own child’s special talents and needs is not unique to the autism spectrum. I have seen that in parents (mostly moms) of kids with ADHD, Down Syndrome, physical disabilities, etc. They are so conditioned to hearing negativity, that when they receive a positive compliment about their child, you can see the relief on their face.

    Karen

    October 1, 2010 at 12:12 pm

    • Hi Karen, thank you for visiting. I hate the expression “helicopter parent” because I do hover a lot, and I know that is what people are thinking. You’re right, it is not unique to the autism spectrum, any parent of a child who is different puts the armor on ready for an assault. Since Pudding’s diagnosis, I’ve met so many more special needs parents and grandparents, and the thing that strikes me is how willing people are to talk once they discover you share something in common. I think there is a lot of misunderstanding because we don’t share our experiences because we’re afraid of the negativity. The more we talk though, the less of a stigma there will be. One of my blogger friends DQ wrote this http://ishouldhavecalledhimcalvin.wordpress.com/the-first-rule-of-autism-club/ which I think is great.

      spectrummymummy

      October 1, 2010 at 12:35 pm

  10. An acquaintance of mine posted a link to your blog on FB. I think your entry was well written & I thank you for sharing your personal experiences. I hope that I don’t come across in a disprespectful way with what I write. If you knew me you’d know it is just NOT my way or intention but I accept that peoples perceptions can be quite different from mine.

    While I am not a spectrummymummy, I do feel the need to check out how parents of kids on the autism spectrum feel & how things are different. I probably won’t ever know ‘exactly’ how you feel but I can certainly try to have a better understanding right? I think our world would be a better place to live in if we put ourselves in others shoes once in awhile.

    I work with kids at our church & have a big heart for all of them, especially those that are considered “different” or need extra attention. (In elementary school I ended up being assigned to a seat on the bus with a boy that was my age but was deaf & drooled because I think when he was an infant he got meningitis & other kids would tease him. I wouldn’t tease him but instead learned the sign language alphabet & some other signs in order to communicate with him.) Whether that “different” is because of autism, or behavior issues, or lack of compassion & love in a child’s life to help him grow & develop on track because of a bad family situation. I feel that each child is special & deserves to be treated with respect, love, compassion, kindness, etc. I think that everyone is made special. I try my hardest to have compassion for the parents & kids with special needs even though I’m not exactly in what some may consider the “same world”. I do hope that someday soon, there will be a bridge to fill the gap that has created the feeling of 2 different worlds. I think that on a whole, we try to do our best with what we have been blessed with. Some of us have been given more responsibilities because we have children with special medical needs, or dispositions, or behavior issues, or a type of autism, but we are all parents without a manual & we are trying to do our best to provide the best for our children no matter what it is that they need. I’m just a parent trying to make my way through life in the best way possible & even though my ‘normal’ is not the same as your ‘normal’ I do hope that you understand that there are some of us, not on the spectrummy that would still like to be friends with sprectrummy parents even if we don’t have a child that is on the spectrummy…don’t count all of us out of an undesrtanding friendship because we don’t know what you are going through. I have such respect & admiration for all of you & I hope that you each find a balance between “catching & facilitating important moments” (well stated Diane) in your child’s life & having some adult relationships that are encouraging to each of you, outside of caring for your child. I personally find that surrounding myself with positive, understanding friends has helped me be a better all-around person & mom. I know that you didn’t say you ‘don’t associate’ with non-sprectrummy parents but I thought it important to encourage you that there are some of us that aren’t spectrummy parents that would still like to be friends with you. Again, I really do appreciate you sharing, how else can I better understand how to step into a parent’s shoes that I’m trying to minister to, if I have absolutely no idea what life is like for them. I’m happy to see how others have taken the oppotunity to connect with you so you can support each other & discuss things that are pertinent to you as spectrummy parents. You are making a big difference in lives.

    JeannetteP

    October 1, 2010 at 12:14 pm

  11. Hi Jeanette,

    Thank you for your comment, and thank you for trying to understand my perspective. For the record, I don’t find your comment disrespectful at all. They only way we will ever learn more about each other is by communicating. Most of my friends are non-spectrummy parents. Since Pudding’s diagnosis, I have become closer to some of those friends and more distant from others. We share our experiences (both on the blog and in person) so that the important people in our lives can better understand. Our priorities have shifted, our financial situation has changed, and it is therefore not possible to continue life as we did before. The balance is hard to find when you have children who need you so much more. The parenting is so much more involved, but I don’t necessarily view that as a bad thing. I hope that as our children continue to grow and develop, there will be more time for us as a couple, and as individuals. Please don’t think I deliberately distance myself from my friends though, check out: https://spectrummymummy.wordpress.com/2010/09/02/i-wasnt-expecting-a-friend/. Friendships are invaluable whether they are in real life or virtual, I welcome all the friends I have in my life- they are what get me through the tough times.

    Thanks again for your comment, and good luck connecting with the other parents (spectrummy or otherwise). We’ll all make a difference together.

    spectrummymummy

    October 1, 2010 at 1:02 pm

  12. Very well written – my son was recently diagnosed as being on the spectrum – at 22 months – at this point we don’t know where he falls, just that he is high functioning, but not talking. It was really great reading this and I felt like I was able to connect with you, a fellow “Spectrummy Mummy” as you put it 🙂 Thank you.

    Kathy Murray

    October 2, 2010 at 1:38 am

    • Hi Kathy, sorry to hear about your son, those first few months are definitely the hardest. I’ve written about them here and here . I know it can sometimes feel like it, especially on the playground, but you aren’t alone in this.

      spectrummymummy

      October 2, 2010 at 7:08 am

  13. Thank you. I needed this.

    My 3 year old was diagnosed with Asperger’s in June, and it’s already been a tough journey for me, mostly because of the difficulty in relating to many parent-friends and family members. I’m a spectrummy mommy now, and just knowing I’m not alone or weird for feeling this way is reassuring. So thank you so much.

    Virginia

    October 13, 2010 at 10:09 am

  14. […] talked before about how being a spectrummy parent can make me feel a disconnect with others, like a stranger amongst friends.  It is equally […]

  15. Loved it. Beautiful. And yes, we can relate. Thank you for this. ((((((hugs)))))))

    jnettlee

    April 5, 2011 at 5:57 pm

  16. This is a good place to start, I think. I’ll add your blog to my blogroll. I wish I could give credit to the quoter, but as I was reading your opening few paragraphs I was thinking of it to myself, “If you’ve met one kid with autism. . . you’ve met one kid with autism.”

    Jim

    September 14, 2011 at 10:11 am

  17. Wow. Thank you. That was an amazingly true post. Thank you for reminding me today that were not alone in this.

    Nicole

    November 1, 2011 at 4:02 am

  18. I have a 17 year old son with Aspergers…I am blessed! He is amazing, he has adapted, overcome bullying, and is a wonderfully kind young man. Now that he is older, is able to feel comfortable and participate in social settings he finds people coming to him. His willingness to accept anyone for who they are makes him an awesome friend. Yes, I admit, I am a very very proud Mother!! Thank you for you blog.

    Anonymous

    December 2, 2013 at 4:27 pm


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

%d bloggers like this: