Kyra…… your Fluffy’s mom is that correct? I understand Fluffy has Asperger’s! When did you find this out and how do you find it being a mother to a child on the autistic spectrum?
We got Fluffy’s diagnosis a little over four years ago after Fluffy got kicked out of a private preschool program. The local school district’s assessment results pointed to an autism spectrum diagnosis and they referred us to a specialist who confirmed he had Asperger’s a few months later. By that time, we had been researching and reading online and were not surprised.
When I found out I was pregnant, someone said to me, Strap yourself in and get ready for the ride of your life.Having a child on the autism spectrum, for me, has been like that: a wild ride. A wonderful, exhilarating, surprising ride that has been, at times, terrifying, isolating and confusing but incredibly illuminating in the most profound ways imaginable.
Fluffy… Hi great to meet you I have read lots about you on mommy’s blog and I see you have your own amazing blog. Is that fun to write?
Sometimes. Sort of, like maybe when I’m in the mood to write and by the way did you read the first one that says that my real name is Wyatt? I just want people to know my real name.
Kyra… So your a really busy mom! As well as being a wife to Dave and mother to fluffy, your a writer and you home school Fluffy is that correct? How is this for you? Do you every get some mommy time?
Fluffy is getting more and more responsible and aware, more involved in the household. The homeschooling is becoming a bit more intuitive and manageable. We now have two fantastic sitters that Fluffy adores, one of whom just started being able to put him to bed so Dave and I initiated regular date nights. So, yes! I actually am getting some mommy time these days! I’ve even gone away for a night or two on my own.
What I need now, what Fluffy and I both need, are some friends! Our life is still too solitary.
Fluffy… What are your best school subjects? Is their any subjects you really love and any you don’t like?
I really love the math school subjects but then cursive can be hard. I don’t really NOT like it but sometimes it can be hard.
Fluffy… I hear you have some favorite foods, french-fries being one of them. tell us what you love to eat?
Do you mean other than French-fries? Now, let’s see…corn dogs, tacos, popcorn, baguette, everything bagels, cotton candy but that’s not really a food. It’s a desert. Oh! I like many things. I like pizza, salad–but that’s not one of my favorites but salad can be really high up there and … that’s all I’m going to say.
Kyra …. Do you find dinner times hard with Fluffy?
Not really. Family dinners have been a sweet time for us, most of the time. Up until the last six months or so, Fluffy’s been a good eater. I’m not sure what’s up with the food lately–he seems to be restricting his diet more and more, having a lot of sight aversion/sensory issues.
A few things we do: Fluffy has a great chair with an adjustable foot rest, a bumpy cushion to sit on and a thera-band tied on the table legs by his chair so he can push against it with his feet. All those sensory ‘snack’ strategies are important. It also helps to make sure he doesn’t get too hungry (it’s always the first thing I think about when his behavior gets out of whack—what and when did he last eat!) As a general rule, we try to make sure he eats every two to three hours, preferably with protein at every meal/snack.
Kyra… Has Fluffy got any sensory problems? Do they affect his everyday life? And have you found ways around them to make both yours and Dave’s life more easy and most importantly Fluffys? I know as a parent to a son with Asperger’s this can be one of the hardest things associated with the condition.
My guess is that the sensory piece is an enormous part of the social struggle for Fluffy. I have this feeling his body and mind get ‘flooded’ in social situations, a kind of bombardment that makes regulation and frankly, thinking, very difficult.
He’s had OT for over three years, but it’s only been in the last six months that we’ve great strides. I think it’s a combination of a great new therapist and Fluffy’s own maturity.
We’re at the point where he’s able to recognize when his body ‘energy’ is off. We’ve worked really hard on this in lots of ways with self-talk and day-to-day strategies to create an ever-evolving sensory diet. We have ceiling hooks for all sorts of indoor swings, bean bags, hippity-hop balls, sensory stuff all over the house!
Where did the name Fluffy come about? I understand it’s his nick name ( very cute )We call our son little man! which I refer to him sometimes in my blog. Reason being is sometimes he really acts like a little man not a child.
We have million nicknames for our son. My husband Dave loves to sing made up words to various tunes, Joy to the World. Ever since Fluffy was a tiny baby, he’d march around the house rhyming nonsense words to that tune, singing something like, “Fluffy McBee, is four times three. He’s eleven times six plus eight times two plus three!” going on and on in the most inane fashion imaginable. It’s been both wonderfully entertaining and annoying for ages. It’s the nickname that others found the most appalling and so, for some reason, it cracked us up the most. And, there you have it!
Fluffy….I see you love star wars! Tell us some more of your favorite things! I have also seen some fantastic videos of you, mommy and daddy. You play the keyboard and piano! Is that fun? You very good.
I really like playing laser tag. And there’s a game called Monopoly Deal that I like, too. My favorite game is Spore where you start as a single cell organism and there’s no real goal in the game other than to have fun. I likeCivilization IV and Crazy Machines–that’s really fun. I like funny cartoons, reading them like Peanuts and Calvin and Hobbs and watching them on TV like Tom and Jerry. I like all kinds of things.
I like to play the piano.
Kyra… Your blog This mom is fantastic! When did you first start writing it and for what reasons?
I started in January, 2005, right around the time of Fluffy’s diagnosis as a matter of fact. I was feeling incredibly isolated and overwhelmed, profoundly worried about how to provide what he needed to really thrive, disillusioned by the lack of support and helpful information available to us, horrified by the double message of Hurry up and get busy with therapies! Don’t miss the magic window! AND the waiting list for assessments and services that were 6 months, one year, up to two years long.
I needed to carve out a tiny place for me to have my voice, my mother-voice and all it’s glory and mess. I wrote for my own sanity during a time of groundlessness and then slowly, through the writing, found my footing and then other mothers out there in the blogosphere, writing about their lives. A real community developed, one I still feel connected to four years later!
Fluffy… There is some fantastic Art work on your blog. Do you do Art a lot?
Sometimes I can like drawing when I’m in the mood.
Kyra….How is Fluffys behavior? I see you have some family rules that you displayed on your blog! Would you mind telling us a little about them and how there working out?
I cannot say enough great things about the Nurtured Heart Approach! We’ve been using it at home for the last few months and it’s been transformative. It’s been called a social curriculum and I can see why. It’s helped Dave and I be a real team in our parenting. It’s helped Fluffy with self-image, episodic memory, impulse control, and self-regulation. It reminds me of RDI in that it’s a way of being with your child rather than a discrete period of therapy.
Fluffy…Do you like the new rules? Are mommy and daddy sticking to them?
I LOVE the new rules! Mom and Dad are completely sticking to them! Boy! Are the new rules great!
Kyra…. Has Fluffy got an interest that he is obsessed with? If so how do you deal with that. And what are your hopes and dreams for your son as he grows up?
Fluffy is most passionate these days about Spore, a new computer game he got about a month ago. All roads lead to Spore! He’s been passionate about other things in the past and I’m quite sure his passion will shift to something new in the future.
I try to approach it as I would with anyone who’s wildly into something: respect his interests, do my best to learn about them, to have real conversations with him about them, give him opportunities to play with whatever the latest fascination is, and create some boundaries around it.
For example, he only gets a certain amount of computer time a week. And if we’ve been talking about Spore for a while, I’ll just say, “You know, I’m getting a little bored talking about Spore now. Can we talk about something else?” Or I’ll simply tell him that I love that he loves it but that my mind can’t keep all the details in! “It’s like a bowl full of water and I don’t have room for any more drops,” I’ll say. He gets this now and sometimes he’ll say, I know, Mom! For me, it’s great. For you it’s like an attack of word bullets!
Kyra….To finish up would you be willing to give one tip or small piece of advice for other parents that may be reading this and have just found out they have a child on the autistic spectrum?
Well, my advice is general and also specific!
The general: I’d say, find someone who you can talk to about the WHOLE process. It’s emotional at first. All parents want their kids to have big juicy lives. When we find out our kids need more than the basic stuff, especially when the news is reported in dire language, it can be terrifying. Find someone who will let you go through a PROCESS, to take you from here to there. Find someone who will listen and also give you hope. Trust that you will move through your feelings and the details of finding out what your child needs and how to provide that for them.
The specific: I think RDI (Relationship Development Intervention: http://www.rdiconnect.com) is a powerful program for the whole family and absolutely mind-blowingly helpful for kids on the spectrum. I think finding a greatsensory integration specialist is key. Once you build a foundation with those two things, or at least make some headway, you might find Nurtured Heart can offer guidance in how to navigate the parenting/discipline piece, especially if you have what you might call an ‘intense child’.
I will say, there has been a significant shift in our lifestyle in the last year that comes Fluffy being in a whole new place. And from me being in a whole new place. It hasn’t come overnight. It’s been bit by bit but it seems to have its own momentum now. I don’t look at him as needing this or that thing to fix this or that issue. I look at him more holistically, like the whole child he is with things he’s good at and things that come more slowly, and try to support his development the best way I can, his whole development.
I don’t worry so much now. Well, okay, I’m alive and I’m a mom so I think it’s safe to say, we all worry. But not in the way I used to. Mostly, I trust that Fluffy’s on developmental pathway that will take him where he needs to go.
Now, my job is far from done. He’s only eight! But I can take what I’ve learned from RDI, from the sensory integration work we’ve been doing and will keep doing, from the Nurtured Heart Approach and my good old gut and hope that over the next ten or fifteen years, he’ll go out in the world with enough confidence and competence to begin the journey of creating a meaningful life that feels good to him. I can’t know for sure.
But who can know anything for sure? The universe is mostly made up of something called dark energy and dark matter, stuff that no one has ever seen. And yet, it’s out there.
We all have to believe in something we can’t yet see. Even if it’s a tiny bit, a pin prick in the black fabric of the night sky. Sometimes that’s all the light you need.
Fluffy… And my very last question for you as I guess you may be getting bored now is what would you like to be when you grow up. And what is the one thing you would like most in the world?
I would like to be an astronaut/space scientist when I grow up the whole idea of black holes and worm holes andwhite holes are very fascinating to me and I want to study them.
I want to be the one to invent a Worm Hole Generator because it is going to help NASA explore space. Worm holes are like time and space teleporters. I’m not sure if the one I invent will be a time AND space one but I would want it to be but maybe just a tele-porter would do. A tele-porter moves someone from one place to another place anywhere in the universe, immediately.
What I want is to figure out what my destiny is in this life and then do it!
Thank you Kyra and fluffy. It’s been great speaking to you both and thanks again for taking part in the Big Interview.
LIKED THE INTERVIEW THEN WHY DON’T READ MORE ABOUT KYRA AND FLUFFY OVER AT THE FANTASTIC BLOG THIS MOM! YOU WILL FIND SOME GREAT POST, WONDERFUL PICTURES AND BEST OF ALL THE LINK TO FLUFFY’S BLOG:)
WANT TO BE PARK OF THE BIG INTERVIEW? EMAIL ME AT parkinson.claire@yahoo.com.
A boy with Asperger's 
Recent Comments