Spectrum Stories

Catriona MacGregor My Dyslexic Son

My son is quite dyslexic (I am too but with a milder case) and was treated very badly in middle school. He went on to graduate from Cal Maritime with an engineering degree and now has an excellent job at VMware in Silicon Valley. He has many of the traits you speak of, i.e. as a child he was definitely the different one in the class room, and this showed itself in what was deemed good and bad ways.

It took him a long time to write, so teachers really got on his case about that. Some thought he was lazy because when he spoke they could tell he was very smart. He did not like to sit still in the classroom either; it was a terrible experience!

He is very sensitive, and I believe intuitively connected. When he was very young and at an outdoor recess at school, a hoard of bees came around and my son was the only child who stayed calm and tried to calm others. Later that same year at a birthday party a little girl fell and hurt herself. Out of the 25 children, my son was the only one who went over to help her up and see if she was ok. He can be incredibly sweet and tender. He is also an excellent writer with a beautiful voice of his own and always has a very new perspective on the world and its ways (of course with lots of misspellings, etc.). He is also a very talented artist. I hope he turns to these creative skills more in his life.

I worked for several years with a non-profit that wanted to change education. A young man there who had invented a program used (which is amazingly impactful) had severe dyslexia (could not function in a school setting). He was like a genius!

The method focuses on teaching math education in such a way so that each child has their very own “ah ha” moment because they do the math, versus being shown or told a formula. The process proved to also build children’s confidence so much that they went on to do well in all subjects including English, etc. I could tell you more if you are interested as this may help schools and children and families that you know or work with. I no longer work directly with this non-profit, but highly respect their work.

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Googled: My Aspergers Child Mark, the blogger, was addressed as the site captain.

This Asperger’s Woman Tells of Her School and Life Experience.

Lyon Milligan:

I feel the symptoms present as the ‘illness’ but they are in fact learning strategies. I know I make rigid black and white assumptions of the world because the world is so chaotic and nebulous to me. I am bombarded by masses of information simultaneously so I need to structure it or I drown.

If I was socially allowed I would be ADHD, but it isn’t so I have learned to be reserved. I am an actress. I mimic. Slow, unavailable, sultry… When you get to know me I am like a butterfly with thoughts and concepts and incoming flying all over the place. It takes ages for me to come out of my Asperger’s shell. The ‘behaved me’ is also exhausting so I can only do social contact for 2 hours and then I have to rest for three days.

They say I’m too far away to concentrate. Damn that! I AM concentrating! On something far more interesting than what they have to say. Focus! When I focus I am searching through masses of information in a frenzied fashion from widely ranging topics trying to find pattern. Most people have trouble finding enough words for an assignment, I have too many words. 100 times the words and have to condense it to find its essence. Mindmaps are my best friend. You should see me when I run out of material to process. I can fall into the deepest of depressions.

When I used to take drugs in my wild youth I would become extremely animated but only within a certain circle of crazy friends. I would say my Asperger’s label equates to the qualities of ADHD stuffed into a Jack in the Box. That’s only part of the picture. Why are Asperger’s attracted to ADHD? I have a theory it is because they need to know how to express that inner thunder. And vice versa. I actually swapped places with my husband. He became inward and I exploded outwards. We taught each other. I think its two different strategies for the same thing.

I’ve seen his two boys adopt the two different strategies as they grew up. Family constellation? And what about my manic depression? Two sides of the same coin?

So what about a cure? Art, music, theatre: use of the other side of the brain. Juggling, dance, piano…any skill that makes both sides of the brain work in harmony. Have a look at the Free Festival Scene in the U.K. You’ll find 100’s of expressive autistic folk. Interesting huh! (P. Magilen bolding).

“I am Matteo Musso, a 13-year-old boy with autism.”

Read below of Matteo’s inspiration that became a musical piece composed by Timothy Higgins, who took the position of Principal Trombone in the San Francisco Symphony in 2008.

In an afternoon symphony performance, Timothy Higgins introduced the next piece by saying that somehow this boy’s letter made its ways to his desk and when he read it he was so moved by the poetic words, he wanted to put it to music. The piece, “I am Matteo” was the result.

Matteo’s letter to the symphony:
“I am Matteo Musso, a 13-year-old guy with autism. I attended the Concerts for Kids today with my mom, my friend Nickolay, and his mom. Until about 12 years ago, I was silent, but I can now express myself spelling one letter at a time on a simple alphabet stencil. Mom takes dictation and has learned this amazing approach to communicate with me. I have so much locked up inside and it likes to ooze out best through poetry. I thought I’d write a poem to you and the musicians about my experience today at the concert.

Matteo’s poem: Soul Bathing

Thankful notes released from the pages of music, found each other and collaborated in my ears. The sounds that were created kissed my soul. Remember the first breath of spring as the flowers opened up their faces and smiled at the sun? Or a walk in the redwoods after a spring time rain when the air is crisp and the oxygen so pure? Your music today accosted my senses and radiated joy throughout my being. Gone are the days of my oversensitive sensory system and my soul rejoices. Notes are allowed to enter me and fill my spirit one again. Happiness, joy, thrill, dance, smile, relax, absorb and nourish…these are words of the music you gave to me today. Thank you for speech that transcends human barriers and penetrates the life of this kid. Your talents shared today was a peaceful bath for my soul.

Matteo’s definition of music:
“Music is nourishment for our souls with different vibrational speeds and frequencies intersecting to affect us emotionally. Different ones and combinations affect us differently and depends on our own simple caring each day. It also depends on our openness to let it affect us.”

About lifewithautistickid

(Check out this blog for ongoing accounts of solutions and life fulfillments, and shown here below, an understanding that love and fulfillment anywhere that truly fits the individual is the goal.)

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about

people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are “normal” do not understand “disability”. Instead of trying to “fix” people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all “disability” . That includes you and me!

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Autism Enlightenment… while Shopping!

Posted on January 24, 2014 by lifewithautistickid

Just before Christmas N and I had gone to Walmart to buy a few last minute gifts. We were waiting, in a very busy store, in a very long line. This is the very stuff of autism shopping nightmares of years gone by. In similar circumstances, not long ago, N would bolt, to get away from the sensory overload – too much sound, too many things to see, too many smells of people and food, too much heat from winter clothes while waiting. Not long ago I would have had to abandon my cart full of items, to find him and coax him out from whatever rack he was hiding under, and get him safely home.

Now N has found a few ways to cope. He has a “comfort-de-jour” for the shopping experience, a comfort that changes from time to time. At present, to comfort himself N takes my head between his hands and gently pushes it down, and then he rubs his face in my hair. When he does this he says “wheeawheeawheeawheeawhee!” I repeat the sound back to him to let him know that I hear him. After we do this a few times, we make eye contact and we both smile, and I say his nickname which is “noonoo”. He is communicating “you are here to make this OK for me” in his own language. He is saying “I love you” in his own words. I am telling him “yes” and “I love you back”.

That day at Walmart two women stood behind us in the line. They were watching us doing our strange face-in-hair thing. I was aware of their attention, but I was not mindful of it. Then one of them spoke to me: “I hope you know, that is an angel you have!” I was taken by surprise. It was an unusual comment in the circumstances – that a stranger could observe our weird interaction briefly, and make a very remarkable observation. I responded that yes he was, or so I believed, and I wished them both a Merry Christmas. But I did not brush her comments off.

Amazingly, a similar encounter occurred at the Superstore a few weeks later, shortly after Christmas. Again there was a long line and the poor cashier was trying to make a difficult customer happy. N was fine because he had mommy’s hair to mess up. Repeatedly, N took my head between his hands and gently pushed it down, and he rubbed his face in my hair while saying “wheeawheeawheeawheeawhee!” I repeated the sound back to him to let him know that I hear him. He is saying “you are here to make this OK for me” in his own language. He is saying “I love you” in his own words. I told him in response, “I love you back”.

Today it was really taking too long, the difficult customer was beset with issues. It was I who was having trouble. With my hair looking rebellious and punk-style due to N’s devotion, I turned around to make a sarcastic comment to the person behind me. Unexpectedly, before I could express my frustration, the lady spoke to me first, in broken English: “Do you know, you have an angel?” She gestured at N. Stunned, given the recent and similar Walmart encounter, I managed to smile, and I falteringly said “yes, I know.” Then, apologetically, I confessed to her. “I did not realize it for a long time!”

She continued without judgement and with a heavy accent that I could not place: “you can see it in his eyes that he is an angel. You chose each other! You must be very strong, very brave, to choose an angel”. She smiled at me with a look of deep respect on her face.

I was taken off guard. That was an idea that never occurred to me. In spite of my belief that our spirits guide our destinies. We CHOSE each other? We chose EACH OTHER. Therefore I chose HIM? Did I choose autism?

This may sound harsh to you, that I would feel a kind of shock, to the supposition that I would choose my own child. It is because that I always wanted to do something important, and I believed that his needs prevented me from achieving my potential. The thought that he is an angel had occurred to me. My son, who cannot speak, who spins whatever is in his hand, who gets stuck under warehouse ceiling fans, who stims on his mom’s hair: he is a sweet innocent soul without the desires or cares of this world. He only wants to see, hear, touch, smell, feel what it is to be alive. Preferably one sense at a time. The shock and disbelief I was feeling, it was because at that moment it occurred to me, that maybe this actually was what I always wanted. To love and care for a very vulnerable person is something important. Maybe the very most important thing I could do.

“I do not know why he chose me” I responded, as my face flushed. But she insisted, “you chose him, you are very strong!”

Now quite red-faced, feeling all at once shame, for my lack of insight, and embarrassed at her praise, I think I made some feeble attempt at humor in response. And I turned my attention to N, who was dancing from foot to foot, teetering in and out of the personal space of the man in front of us, whose reaction was more typical. How the table has turned, when there is comfort in that.

I am still thinking about the similar, insightful words spoken by two different strangers in two different stores. Is it because it is something I want to hear, that my son is an angel? Or is it because there is a moment of truth for me personally, something about my own self that I have overlooked out of vanity?

Post Intensive Intervention

Posted on May 23, 2017 by lifewithautistickid

N came home in January, about 1 week after New Years.

We came away from intensive intervention understanding N a lot better. We came back to our life with a knowledge that those who cared for him there, truly loved him and enjoyed him. And we knew that N loved being there. He loved home too. But he was happy in that structured world where he lived with others like him, some higher functioning and some lower functioning, with rotating caregivers who wanted to work with kids like him, and knew how to work with them.

It gave me another perspective on the future. I have always thought of how grim it was. I know he will never be able to acquire independence. He will never read, or write, or tell time, or ride the bus by himself, or handle money, or have a job, or have a conversation with somebody. I know he might face years of waiting only to have some kind of service less than well-conceived to support his life.

But I realize now, there is the possibility of community, and happiness, for N and others like him, if only we, the able-minded and capable-bodied of this world, can look beyond our own vision of what community means, and be open minded about inclusion, to see creative options for living for our special needs.