In honor of April being Autism Acceptance month I thought I would post something everyday that Fox has told me since he started expressing himself last summer. Talking to him has changed my whole perspective on what autism actually is. To start I asked him if he had a message he wanted to share on autism acceptance and he had two messages:
TO TEACHERS: ALWAYS KNOW AUTISTICS HAVE LOTS OF INTELLIGENT THOUGHTS AND CAN UNDERSTAND YOU. PLEASE TEACH INTERESTING THINGS AND MAKE SURE TO ALWAYS AND VERY FOREVER TALK NICELY TO AUTISTICS. THEY CANT HELP THAT THEIR BODIES DONT LISTEN TO THEIR MINDS.
TO LOVING RUBY: I HOPE YOU KNOW THAT I LOVE HOW YOU ACCEPT ME JUST HOW I AM AND ALWAYS LOVE ME.
For day 2 of autism acceptance month we have Fox's views on eye contact. This is something that came up last week when we were learning about how illusions are used in art and were looking at the Mona Lisa. I asked Fox if he had trouble looking at faces: EACH FACE HAS TOO MANY THINGS THAT ROTATE ROUND AND ROUND AND ITS QUITE CHALLENGING TO LOOK BECAUSE FOX GETS TIRED EYES TOO EASILY. (What rotates round and round?) EACH EYE AND LEAPING NOSE AND MOUTHS ARE QUITE DIFFICULT TO LOOK AT. (So when people ask you to look them in the eye it must be pretty frustrating for you) TOTALLY. (Some autistics have said they can't look at a face and listen to the person at the same time) YES IT IS HARD TO LISTEN AND HAVE PEERING FACES IN MY EYES.
For day 3 of autism acceptance month here are Fox's views on friendship. Fox always seems disinterested in other people, he rarely responds when someone talks to him or says hi. He doesn't seem to seek people out and doesn't play in the traditional sense of the word. But that's just another case of his body not listening to his mind. He actually really wants friends and to connect with other people just like we all do. He has a really good friend who also talks with letters and they get together every week and talk and he loves it. He also has a pen pal who we met when we went to Texas to learn RPM. He wrote Fox that he was feeling lonely so Fox wrote this back to him: YOU DON'T REALLY NEED TO BE LONELY I AM YOUR ALWAYS GOOD FRIEND OR A SISTER IS ALSO A GOOD FRIEND TO HAVE. THE AMAZING THING ABOUT HAVING FRIENDS IS HAVING PEOPLE TO TALK TO AND KNOWING THAT THEY LIKE YOU AS YOU ARE AND DON'T MIND IF YOU LOSE CONTROL.
Yesterday Fox told me that he wants more good friends. When I asked what he would like to do with his friends he said: READ INTERESTING BOOKS? I AM SO NORMAL VERY MIND NORMAL. I FEEL BETTER AND WANT TO ALWAYS HAVE FRIENDS. HOW DO PEOPLE MAKE FRIENDS?
Because Fox doesn't like it when I talk about him in front of him he decided to write a letter a while back to show people that we meet so I didn't need to explain the situation in front of him. He wrote:
HI MY NAME IS FOX I TALK WITH LETTERS AND NOT MY MOUTH. PLEASE KNOW THAT I UNDERSTAND EVERYTHING YOU SAY BUT I AM NOT ALWAYS ABLE TO RESPOND. I AM SORRY IF MY BODY DOESN'T LISTEN TO MY MIND I AM TRYING TO ALWAYS BEHAVE BUT IT IS HARD. I HOPE YOU HAVE PATIENCE WITH ME I AM AN INTELLIGENT BOY ONCE YOU GET TO KNOW ME.
I just wanted to share because I have heard it said sometimes that these kids are happy in their own little world and we should let them be happy there. But Fox was so lonely he just had no way to connect and it's still a challenge but it's getting better and he is much happier because of it. And he was never "in his own world".
For day 4 of autism acceptance month the topic is control. We have discovered since talking to Fox that he really has no control of him impulses and probably has OCD. Things that we've always treated as "behaviours" are truly out of his control and it's such a frustrating thing for him. The many years of being asked to stop something that you can't stop has made it a very sensitive thing for him to talk about. It's worse when he's tired or stressed, he can hold himself together pretty well if those are not factors. Unfortunately he doesn't sleep well and has a lot of anxiety so it's a daily struggle for him. After a very difficult day I asked him what it felt like to not be in control: LIKE IM NOT IN MY BODY IM ONLY WATCHING SAYING STOP AND A BODY DOESN'T LISTEN. Other things he's said about it are: I TRY TO NOT ALWAYS BEHAVE WRONG BELIEVE ME IT IS A HARD THING TO ALWAYS EACH DAY BEHAVE WRONG. , MY INTELLIGENT MIND ISN'T LISTENED TO ALWAYS BY MY BODY, MY TERRIBLE BODY IS EACH DAY BEING DESTRUCTIVE, MY NATURAL TENDENCY TO ALWAYS BE DESTRUCTIVE IS NOT FUN, TO BE IN CONTROL WHAT DO I DO?
Sometimes it's the nervousness about knowing he might get in trouble that makes him anxious enough to lose control.
When I asked him if he had any hopes or goals for the new year he said I AM GOING TO LEARN HOW TO ALWAYS CONTROL MYSELF.
When I couldn't provide the answers he was looking for he wrote to his friend who also has autism and said: ONLY EACH DAY I AIM TO BE A BETTER BEHAVED FOX. HOW DO YOU STAY IN CONTROL? I CAN'T EACH DAY. BAD BODIES ARE THE WORST DON'T YOU THINK? ABILITY TO CONTROL IS A WONDERFUL THING. I AM NOT A MAGICAL BEING I HAVE ONLY AN INTELLIGENT MIND NOT BODY.
So if you're wondering why he keeps doing something he knows he's not suppose to do, or does something dangerous, or keeps putting toys in his mouth, etc etc, he's wondering the same thing and just wants the people around him to keep him safe without getting mad about it.
Happy Easter! For day 5 of autism acceptance month here is Fox's view on happiness: ALWAYS HEAR HAPPY THOUGHTS AND HAPPINESS LOOKS FOR YOU. NEVER SEE SAD THOUGHTS AND YOU WILL BE HAPPY ALWAYS.
Fox just has such a positive attitude about life when it would be very easy to be down on himself given all his challenges. He has talked a few times about happiness being a decision and he chooses to be happy, I just love that.
We've gotten very use to strange looks and rude comments when we're out in public and I usually just ignore it, but once I saw how aware Fox is of it it has become much harder to ignore. Anyways I was talking to Fox about it because last week I called someone out on it and I wanted to know if it bothered him that I said something: YES I AM ONLY HOPING A LOVING MOM IS NOT SAD LIKE SHE WAS WHEN THE HORRIBLE LADY WAS MEAN. TO A MOM JUST IGNORE MEAN LADIES THEY ARE IRRELEVANT TO ME HAPPY I AM LEAVING THEM BE.
So the lesson I learned is ignore mean people and choose to be happy, a good life lesson for us all
For day 6 of autism acceptance month here is a list written by Fox and his friend about the misconceptions of autism. Sitting in on the conversations between these two boys is the highlight of each week for me. They are both so sweet and smart and patient with each other, and it feels so good knowing Fox has a friend that really gets him. So without further ado here is what the real experts think the misconceptions about autism are:
B: HAVING A STUPID MIND
F: THAT AUTISTICS ARE ALWAYS DOING WHAT THEY WANT TO DO
B: THAT WE CAN'T LEARN
F: THAT AUTISTICS ARE NOT ABLE TO ALWAYS UNDERSTAND OTHER PEOPLE TALKING
B: THAT AUTISTICS HAVE CONTROL OF THEIR BODIES ALL THE TIME
F: THAT AUTISM MEANS WE LEARN A LOT SLOWER THEN EVERYONE ELSE
B: THAT AUTISTICS ARE BADLY BEHAVED
F: THAT AUTISTICS YELL ON PURPOSE
B: THAT AUTISTICS DON'T NEED FRIENDS
F: I AM LIKING THAT ONE
B: ITS BULL
F: B IS A GOOD FRIEND
B: YOU'RE A GOOD FRIEND TOO FOX
For day 7 of autism acceptance month a little bit about RPM, the method that we use to teach Fox. We've tried different alternative communication methods and they all start by teaching requesting, so he can request using sign language, he can request using the proloquo2go app on his iPad so if he needs a snack he is golden, but it never went beyond these one word requests. RPM is different, you teach communication by teaching him to answer academic questions. And not the preschool level skills he's been stuck at his whole life, with age appropriate interesting topics. What we found is that learning to answer a question about a fact you just learned about space for example is a lot easier then talking about your thoughts and feelings. Once he got good at talking about what we were learning about that's when the open communication came and we really found out what he was thinking this whole time. So to him learning and communicating go hand in hand. Early on in his open communication we were doing a lesson on horton hatches an egg and talked about how horton had to be patient but he was rewarded in the end just like learning takes a long time but is rewarding in the end, when I asked what that reward was he said TO KNOW ABOUT LOTS OF THINGS AND TO UNDERSTAND EACH OTHER.
One day he was looking at a picture of himself when he was very young and I asked him if he remembered it: ALL I REMEMBER IS MOM AND DAD NOT TEACHING ME TO TALK (Do you mean with your mouth or with letters?) LETTERS AND LEARNING ABOUT EVERYTHING.
A couple weeks ago we were learning about Alexander the Great and talked about his legacy and when I asked Fox what he hopes his own legacy will be: I HOPE ONLY THAT MY LEGACY WILL BE THAT AUTISTICS ARE TREATED NICE AND TAUGHT INTERESTING THINGS.
We thought before all of this that he hated learning he wouldn't sit for it and would get very upset when someone tried to teach him, but he was just so completely bored with being taught the same things over and over with no way to show what he knew. Even now when he's able to communicate so well, if I spend too much time talking to him about non-academic things he will always say he's done talking and is ready to learn.
For day 8 of autism acceptance month here are some of Fox's goals for the future. What Fox calls his destructive tendencies was also an early indication that he needed to know how things work and now this same drive has made him very interested in science. When I asked him what interest him most about science he said HOW THINGS WORK IN ALL AREAS OF SCIENCE. We've read a few biographies of different scientists and there's always something that Fox can relate to, but he draws his biggest inspiration from Stephan Hawking. After learning about him I asked him what was more important a working body or a working mind and why? MIND BECAUSE MINDS CAN IMAGINE AND MAKE IDEAS AND TALK. Hawking's goal in life is to solve the mysteries of the universe, so I asked Fox what his goal in life is and he said TO SOLVE THE MYSTERIES OF AUTISM I WILL SEARCH FOR ANSWERS IN SCIENCE.
A few months after we had this conversation I asked him again what his goal in life is and what steps he will take to reach it: I WANT TO BE A SCIENTIST. I WILL START BY LEARNING LOTS ABOUT SCIENCE AND LEARNING TO CONTROL MYSELF. EACH DAY I WILL PRACTICE MY LETTERS NOT GIVING UP ON MY DREAMS.
For day 9 of autism acceptance month Fox's love of letter writing. The first time Fox decided to write a letter was to Duan because Fox decided he wanted a cat and Duan is a little allergic and did not want a cat.
DEAR DADDY, I THINK A CAT AS A PET IS A MAGNIFICENT IDEA BECAUSE I LIKE A CAT TO PLAY WITH BECAUSE I DONT HAVE ANY PETS AND I WANT TO. I AM SURE YOU ARE GOING TO LIKE MY CAT TOO. I AM HOPING YOU SAY YES SO I AM A PET OWNER. I LOVE YOU AND I AM TRYING TO BEHAVE SO YOU LOVE ME TOO. SO A CAT COULD MAKE US HAPPY.
The kids now have two cats. The next time he wrote a letter was after the kids got a look in Duan's toolbox and weren't allowed to use his tools. Ruby asked where he got his toolbox and they found out it was from their grandma and then this letter was written:
DEAR GRANDMA, I ALSO WANT A TOOLBOX AND I HOPE THAT YOU WILL THINK ABOUT BUYING ONE AND A RUBY WANTS A TOOLBOX TOO. I NEED IT SO I CAN BREAK APART CENTER AND DADDY DOESN'T LIKE IT WHEN I USE HIS TOOLS. THANKS AND I LOVE YOU. FROM FOX
The kids now have their own toolbox. Now he writes letters to his friends and sometimes to set people straight and i love every single one of them
For day 10 of autism acceptance month here is Fox's guest post on the Faith, Hope and Love With Autism blog:http://faithhopeloveautism.blogspot.ca/…/how-rpm-changed-my…
This is a blog written by 12 year old Phillip who also learned to communicate with RPM. Every day this month he is featuring something written by an RPMer and they are all great. It's a wonderful way to see the variety in the RPM community and learn so much about autism. We've actually used parts of Phillip's blog in our lessons as a spring board to discuss how Fox's body feels and works so he was quite excited to be a part of it.
For day 11 of autism acceptance month a little bit about sibling love smile emoticon. From the day Ruby was born she was being carted around to every appointment Fox had, most therapy sessions, she really was such a big part of everything he did. Most of that time if he wasn't actively trying to avoid her he was seemingly indifferent to her. But she persisted and at some point realized that if she copied what he was doing he would pay attention to her. She started asking me to leave them alone to let them play together, I got a lot of "he's my brother mommy let me talk to him!". Whenever she's invited anywhere she asks if Fox can come too. When I pulled Fox out of school she asked if he could be in her class instead because she knew her teacher would be nice to him. She's never shown any sign of being embarrassed of him and loves having him around. Then Fox started talking and we found out the feeling was very mutual. Now they write stories together and play games together and he tells her how funny she is. When we're learning he always seems to find a way to make it about Ruby, here's a haiku he wrote right after he learned what a haiku was:
ONLY A RUBY
IS A LOVING FRIEND TO ME
RUBY IS THE BEST
Fox still pinches her sometimes when he gets out of control and he just can't stop his body from doing it. One day he said TO RUBY UNDERSTAND EACH TIME I HURT YOU I WISH I WOULD STOP I LOVE YOU (Ru: I love you too) I'M ALWAYS HAPPY HER HEART IS LOVING
There are just countless examples of how much he just adores her, here is one: RUBY IS THE BEST I LOVE HER SO MUCH. RUBY IS WISHING TO BE A SCIENTIST WITH ME? I HOPE THAT HAPPENS I REALLY LOVE RUBY. MORE RUBY IS ALWAYS A GOOD THING.
For day 12 of autism acceptance month, intention. We found out pretty quick that Fox is not always in control of his body but it took us longer to realize that he's not always in control of his body communicating with signs. Sometimes what he indicates with sign or body language is not what he intends at all. Whenever I read to him he is usually bouncing around the room seemingly not paying attention (although I know now he is taking it all in) or is actively signing stop or trying to close the book. One time I asked him afterwards why he didn't like me reading to him he said I LOVE IT WHEN YOU READ TO ME I DON'T CONTROL ASKING TO STOP PLEASE KEEP READING.
It took me a long time to really process what this means and to start asking him on his letterboard instead of taking his head shakes and head nods as being absolute. One day he had lost his screwdriver and he kept asking me for it, I kept telling him I didn't know where it was and he was going to have to find it. This went on and on to the point where he was getting very upset and I was getting frustrated. Duan being the smart guy that he is suggested that I ask him where it is on the letterboard and when I did he said I EXPECT IT IS LOST (so what do you want me to do) NOTHING I AM NOT CONTROLLING ASKING.
A few weeks ago he asked to go to the park and when we go there he was signing car, home, no. So I asked with his letterboard if he wanted to still play at the park and he chose Y so I went to get him out of the car and he was shaking his head, signing home, getting upset so I told him I was confused and didnt understand what he wanted and he said ONLY LISTEN TO MY LETTERS.
Those are just a few examples of how much his body is working against him and how easy it would be to misunderstand his intention.
For day 13 of autism acceptance month, noise. Fox asked me once DO BIG NOISES JUST HURT ME? I AM A GOOD HEARER. He is very sensitive to noise and can manage it somewhat with his noise dampening headphones but it's something that bothers him everyday. I told him that it was common among autistics to be extra sensitive to sounds so he wrote to one of his friends: LOUD NOISES HURT MY EARS. DO THEY HURT YOURS TOO? I LIKE A LOUD NOISE IF IT SOUNDS APPEALING LIKE MUSIC BUT NOT IF IT SOUNDS LIKE ROUGH SOUNDS. and then later: YOU ALSO ARE HATING LAWN MOWERS. I HATE THEM TOO. NOT BECAUSE A LONG GRASS FEELS GOOD BUT BECAUSE THE NOISE HURTS MY EARS. HOW DO YOU MAKE THE NOISE NOT HURT?
The music comment kind of surprised me because he always has seemed to hate when we play music and also finds his white noise machine turned to max volume very soothing. When i asked him about music he said I SOMETIMES LIKE MUSIC (in the car?) NO IN THE CAR IT IS TOO LOUD (where do you like it?) I SOMETIMES LIKE IT AT HOME and when i asked why he always asks me to turn it off SOMETIMES I DON'T CONTROL ASKING TO STOP. He also has told me that he prefers music with no words in it that the words make it hard to listen to.
Over the past several months he has seemed extra sensitive to noise, things that haven't seemed to bother him before bother him now. Things like running water from the tap, the hum of the fridge, sounds that have always been around. I asked him if his ears are hurting more these days SAME AS ALWAYS I AM ABLE TO ANNOUNCE IT NOW.
The noise pain is real and not something he can just get used to. But I find myself very thankful again for the friends he has to talk to about this stuff, that can really understand what he's going through.
For day 14 of autism acceptance month, venting. One of the things Fox has never been able to do is stand up for himself, he couldn't tell people they were being unfair, he couldn't tell them he was scared and he couldn't refuse to do something so it always come out in melt downs and explosions of anger. Now that he's able to express his anger he's much calmer. I know I always feel better after venting to someone when something bothers me. For the past week Fox has been randomly screaming at the top of his lungs, it's been driving me crazy and he also hates it because it hurts his ears. But like with everything else he just can't control it. Yesterday he overhead me tell Duan that I hate the screaming. I guess he kind of stewed on this all day. Every afternoon Fox has a bbm conversation with Duan, Fox spells out what he wants to say on the letterboard and I send it to Duan for him. I tried getting clarification on what he wanted to say once and he said I AM ONLY TALKING TO DAD, so I don't chime in, i'm really just his keyboard during these conversations. So yesterday Fox started by saying HI DAD MOM IS A HORRIBLE TEACHER and followed with SHE ALSO IS A ONLY MEAN MOM, then stuff like DO MOMS LOVE FOXES I THINK NO, BECAUSE MOM IS A MEAN MOM NOT A MOM THAT LOVES. Duan tried to diffuse the situation and Fox was not backing down and when Duan asked what I did he said NOTHING I AM EACH DAY A REALLY LOUD SCREAMER AND MOM HATES IT. Even by bed time Fox still said he was mad at me. And I get it, I really hurt his feelings, I complained about something he can't control and something that he himself hates but can't stop. So I apologized and left it at that then this morning he told me I AM A LOVING SON TODAY. And it's over he's not mad anymore and I'm going to be more careful when I vent. He is always so sweet, he has never talked like this before, but I'm so glad he was able to get the anger out and vent to his dad even if I was the subject of that anger
For day 15 of autism acceptance month, since we are halfway through the month I just wanted to share that I've been reading Fox all of your comments and he has been loving it. Last week he actually brought me his letterboard so he could ask me what I was writing that day. It's a very rare thing for him to do that, usually I bring it to him to see if he has something to say, the last time he actually initiated it was last summer when he wanted to tell Ruby he loved her. Here's a little conversation we had about it:
SO EACH DAY A MOM IS GOING TO BE SHARING MY WORDS? TO A MOM I AM SO HAPPY TO DO THAT. DO YOU THINK MORE AUTISTICS WILL BE TAUGHT INTERESTING THINGS NOW? (Yes you're changing the world one person at a time) TO REALLY CHANGE THE WORLD NOBODY SHOULD TALK TO AUTISTICS LIKE THEY ARE NOT HEARING AND UNDERSTANDING. ALWAYS AM HAPPY TO SHARE MY WORDS AND I HOPE IT TALKS OTHERS INTO ALWAYS JUST TEACHING INTERESTING THINGS TO AUTISTICS. I AM A REALLY GOOD WRITER I THINK. I HOPE THAT I GET TO ALWAYS A HELPFUL WRITER BE. SO I AM REALLY TEACHING PEOPLE ABOUT AUTISM? (Yes and I get to learn the most) TO A MOM, I LOVE A MOM TEACHING.
When Fox realized that he could help other autistics have a better life by first sharing his speech and now this it has really helped his confidence and his happiness. He cares so much about other people and often asks me how we can teach others to talk with letters so they can learn interesting things too. So thanks for all of your kind words, they are appreciated!
For day 16 of autism acceptance month, hidden intelligence. When I first started doing RPM with Fox it was because it's the only thing I could find that said you could educate someone with severe autism. I had pulled him out of school, his IBI was over, I had him at home with me and I wanted to teach him but didn't know how. Pretty early on in our RPM journey I realized how incredibly intelligent he is, his memory is amazing and he's an incredible problem solver and just capable of so much more then anyone ever imagined. We use to do little crosswords to warm up at the beginning of our sessions to practice his spelling. One day the answer was printing press, I didn't even know the answer and he got it. I asked him how he knew what a printing press was FROM HOMER WATSON IN MUSEUM. We have been to the doon heritage museum on home watson a couple times and even though he didn't appear interested at all he was absorbing everything. Most days I don't even feel like I'm really teaching him because I tell him something once and he knows it and rarely gets an answer wrong. So imagine being that intelligent and then year after year being taught the same preschool level skills over and over and over. It must have been excruciating. At the beginning of every session I ask him if there's anything he wants to talk about before we start our lesson and one day he said I AM HAPPY JUST SO HAPPY (why?) I LIKE PEOPLE NOT ACCEPTING AND FANNING THE FLAMES OF AUTISM ADDING TO MY MISSING KNOWLEDGE AND ASSUMING I AM SMART (what was it like for you before you could talk like this?) EACH DAY I FELT MISUNDERSTOOD AIMING TO BE GOOD HEARING EACH AND AIMING TO BE HEARD. I AM EACH DAY HAPPY TO BE TALKING.
It is SO important to presume competence when you have a person that can't express themselves. You don't know what they don't know if they have no way to show you. It is much more harmful to presume incompetence and be wrong then to presume competence and be wrong.
For day 17 of autism acceptance month, imagination. One of the myths of autism is a lack of imagination, evidenced by a lack of pretend play. But when you can't control your body and have no way to express yourself and are driven by sensory needs your play is just different. Fox has a great imagination, something that has helped him get through difficult times because he's been alone with his imagination a lot. Here's one of the short stories he has written, it always makes me smile:
Once upon a time THERE WAS A HAPPY KID WHO LIKED TO IMAGINE HE INVENTED PILLS THAT GIVE HIM AMAZING INCREDIBLE JUMPING SKILLS. HE LIKED TO CLIMB UP HIGH AND LEAP DOWN. ONE DAY HE KNEW NOTHING BAD WAS GOING TO HAPPEN SO HE DECIDED TO CLIMB MOUNT EVEREST. HE GOT ALL THE WAY TO THE TOP AND UNDER HIS COAT HE HAD A PARACHUTE. HE LEAPED OFF AND OPENED HIS PARACHUTE. IT QUICKLY FLEW OPEN AND HE WENT DOWN. A BIRD FLEW AND LANDED ON HIM. HE ATTACKED HIM IN HIS FACE. IT WAS HURTING SO HE ATTACKED THE BIRD. THE MORAL OF THE STORY IS LOOK BEFORE YOU LEAP. SAVE A BIRD FROM ATTACK. THE END.
For day 18 of autism acceptance month, alternative communication. Fox had been working with the proloquo2go app on his iPad for a couple years. It talks for you when you press picture buttons of what you want to say. Fox pretty much just requested with it and answered some questions, he never combined words and it didn't end up expanding his communication like we had hoped. Now that he can talk so well with his letter board I wondered why he didn't talk more with it, the thoughts were there so what went wrong. When we were learning about Jobs and Wozniak inventing PCs I asked him if he could think of a way their technology has helped him. I AM HELPED BY MY IPAD AS I TALK WITH IT (Do you like talking with your iPad?) NO BECAUSE I CANT BE A NORMAL HUMAN GUY (Do you like talking with your letters?) YES BECAUSE I CAN SHOW HOW SMART I AM.
I asked him again a couple months later because he was talking better and I wanted to know if he had more to say about it. Why do you like talking with letters but not p2go? ONLY LETTERS MAKE ME SAY ALL I THINK AND LETTERS ARE TALKING BUT IPAD IS NOT. NO IPAD IS A VOICE LETTERS ARE A VOICE. I AM NOT SURE BUT I JUST THINK I LIKE LETTERS BETTER.
Now I'm not 100% sure why he feels this way but a system where the adult chooses what buttons go in it decides what the child will be able to talk about and will always limit that child. Spelling will always be better if we presume competence and believe it is possible.
For day 19 of autism acceptance month, baby talk. The first year after Ruby was born was very difficult for all of us, Fox did not take well to having a baby in the house. When we were reading about Einstein we discovered that he hated his sister when she was born but then became best friends with her later on. I asked him how he felt about Ruby when she was a baby SHE WAS LOUD AND A TERRIBLE PERSON. (when did you start loving her so much?) LATER WHEN SHE COULD TALK.
Months later, out of the blue he asked me ARE ALL AUTISTICS ABLE TO HANDLE A NEW BABY? (Why do you ask?) BECAUSE I HAD A HARD TIME WHEN RUBY ARRIVED. (You were just 2 how much do you remember?) A LOT LIKE A CRYING BABY IS LOUD AND I AM CRYING TOO. (I didn't know how to explain the baby was coming did you understand?) ONLY I HAD NOT A GOOD ABILITY TO INTELLIGENTLY TALK TO MOM. TO A BABY A BROTHER IS A BIG PERSON. I HAD A HIDDEN ABILITY TO UNDERSTAND AND I ALWAYS AMAZED A BABY. (what else do you remember from back then?) MOM AND DAD EACH DAY ALWAYS TRYING TO HELP ME TALK AND NOT ACKNOWLEDGING THAT I AM AN INTELLIGENT BOY. (It did take us a long time to figure everything out) I AM HOPING THAT A DAD AND MOM ARE ALWAYS HAVING HOPED I AM SMART.
For day 20 of autism acceptance month, likes, dislikes and fears. I don't know how many times I've had to fill out a form that has asked for Fox's likes, dislikes and fears. It always stumped me, I hated doing it because I knew I was just guessing. A couple months ago I needed to fill out another one and for the first time Fox told me what to write:
Likes: ALL FOOD, CLIMBING, NICE PEOPLE
Dislikes: LOUD NOISES, PEOPLE THAT TALK TO ME LIKE I'M STUPID
Fears: HAVING NO WAY TO LEAVE, HEARING THE PEOPLE TALK BAD ABOUT ME.
This list makes me sad because you can get a really good sense of how people have treated him his whole life, how non-verbal kids are treated in general. It's why it's so important to him to speak out and try and change people's minds about what autism really is.
For day 21 of autism acceptance month, feeling thankful. Every year at Thanksgiving Ruby has been making a thankful turkey where she writes on each feather something she is thankful for. Last year was the first year that Fox made one. He chose: ALWAYS EATING, TURKEY, MY SISTER, KOMBU, MY BLOCKS, MOM AND DAD, BLOWING OUT CANDLES, MY LETTERS, UNDERSTANDING.
Thanksgiving the year before was very different, it was a couple weeks before we pulled him out of school and he was as wild, out of control and miserable as I had ever seen him. It was like he was in a constant state of fight or flight and could explode at any minute. If someone had told me then that a year later he would be communicating like this, that his brain was thinking and working fine this whole time, I don't know how I would have reacted. But it always pays to hope for the best and to never give up
For day 22 of autism acceptance month, a note from Fox on what autism feels like.
AUTISM IS MANY DIFFERENT THINGS LIKE BEING ABLE TO FEEL HAPPY, BEING ABLE TO FEEL REALLY SAD, BEING ABLE TO FEEL LIKE A PERSON AND NOT AN ANIMAL. MORE DEEP THEN ANYONE KNOWS. LOUD BUT QUIET AND ALWAYS MISUNDERSTOOD. AUTISM IS LIKE HAVING KNOWLEDGE THAT ONLY STAYS IN YOUR HEAD IT NEVER IS SHARED IT ALWAYS IS HIDDEN. THAT FEELS HORRIBLE NOT TO FEEL SMART. REALLY PLEASE BELIEVE IN AUTISTICS THEY NEED YOU TO ALWAYS KNOW THEY ARE SMART. APPLES AND ORANGES CAN MIX IF PEOPLE ARE BELIEVING IT IS POSSIBLE. I'M A GOOD EXAMPLE THAT AUTISTICS CAN LEARN AND LIKE TO LEARN.
For day 23 of autism acceptance month, talking to Fox. Fox gets very overwhelmed in a crowd, but sometimes it's just unavoidable. I asked him how he feels at family or public events that are crowded: SOMETIMES I HAVE A HARD TIME BECAUSE THERE ARE A LOT OF LOUD PEOPLE NOT ALWAYS BEING SENSITIVE TO MY DELICATE EARS AND NOBODY TRIES TO A FOX KNOW AND TALK TO. (Some talk to you) I AM SURE SOME DO BUT NOT ALL. (I'm sure that will change now that you have your letterboard) HOW ARE THEY GOING TO KNOW I CAN TALK? (Because i tell everyone) A LOT OF PEOPLE TALK TOO LOUD TO ME. I AM TALKING TO A LOUD TALKER AND I CAN SAY PLEASE BE QUIET IT HURTS MY EARS? (yes when you ask nicely it isn't rude) I ALWAYS AM NOT GOING TO SAY RUDE THINGS.
This happens a lot where Fox gets treated like he's hard of hearing so people talk loud and slow to him, but he's actually has extra sensitive hearing so it's not helpful at all. I'm sure this will improve the more he speaks up for himself. He rarely looks like he is listening when you talk to him, his body is so busy, always moving, but he is hearing every word. No need to dumb down speech or repeat, he gets it.
For day 24 of autism acceptance month, celebration. After learning about Pi day, I asked Fox if he created a day of celebration what would it be: I WOULD CELEBRATE A FOX STARTING TO TALK IN LETTERS. (What day?) MAY 1
(why?) ON MAY I STARTED LEARNING LETTERS. (what should we call it?) NATIONAL DAY OF FOX'S VOICE. (what should we do on that day to celebrate?) ON MAY 1 WE SHOULD ALL THINK AND LETTERS TALK. I AM ALWAYS ONLY LETTERS TALKING SO WE ALL SHOULD.
So that's what we will be doing on May 1st to celebrate Fox finding his voice. There may also be cake involved
We are going to be pretty busy over the next few days so I don't think I will be continuing these posts. Fox is very eager to start his blog so when we get around to that I will post the link. Thanks for reading, we hope we were able to open some eyes and show you that what you see is not what you get when it comes to severe autism, they are capable of so much and have so much to offer.