DAY29/ 23 days left! (English article) From Miki

The reason why I insist on using the phrase “second son on the Autism spectrum” instead of “Autistic son ”

 

My second son was born 14 years ago.

 

Soon after he was born, I felt discomfort in his mouth,

that there was a mass (a large blister) on the back of his tongue.

Fortunately, it was benign.

 

When he was 3 months old, he had an operation under general anesthesia.

 

I was very nervous from the beginning of his birth.

 

 

Soon after the surgery was over, I was relieved, but then a completely different child-rearing process I’ve never experienced when I raised my first boy, began.

 

Thinking back, I had what is called “difficulty in raising a child” from the time he was a baby.

 

During the night, I had to wake up every hour to feed my baby.

Moreover, I had to carry him in my arms and feed him while walking to sleep. He was like that every day.

 

When this continued day after day, I became dizzy, felt like I was going to break down, and often nursed him while crying. I spent many days like that.

 

When he became able to crawl, he started hitting his head on the floor,

I had to put cushions and other things on the floor to guard him, and it was hard to relax.

 

I was curious about the head banging, so I looked it up on the Internet,

I found that “we had it too, but it didn't get caught in any medical checkups.

 

On the other hand, I found the sentence “Our child was on the autism spectrum” and so on.

 

I spent many depressing days looking at all these things.

 

My mind and body were exhausted, and my older son also had a hard time.

 

When the time came for the 3-year-old child's medical checkup,

to be honest, I felt a mixture of dreading the checkup and wanting to clear my mind as soon as possible.

I was struck by such a feeling.

 

 

But, “I was afraid that my child would be diagnosed or not, even though it would not make any difference. What are you waiting for? “— I said to myself.

I gathered up my courage and went to the 3-year-old child's medical checkup.

 

As I had imagined,

my second son had to undergo a developmental examination.

 

 

And then.., he was diagnosed with mental retardation and autism spectrum disorder.

 

Later, a sleep disorder was added to the list.

 

 

When I heard the doctor's explanation,I was listening in tears.

 

What should I do from now on?

I wondered what I would do for him in the future and whether he would be able to make it in this society.

I was so anxious that I was not sure what I should do.

 

Yes, those tears were not tears of despair over the autism spectrum disorder itself,

but from a great anxiety about Japanese society, which tends to demand uniformity.

 

 

I surely love him so It was very hard for me to be looked at coldly.

 

 

But...,

I think I was lucky to be able to take the developmental test.

 

Otherwise, I might not have had the opportunity to read and learn about developmental disabilities such as autism spectrum disorder.

 

I think I was lucky to learn about it.

 

And that all of us have neurodiversity,

It was very clear to me to know that everyone is on the spectrum (everyone has some characteristics).

 

For example...

 

Looking at my child,

 

The information in the brain is in no particular order.

(I imagine that many pictures - memories - are arranged in random order, not in chronological order.)

 

He catches various visual information in the same line, so his eyes don't meet.

This makes him tired easily.

 

Sleep is often a problem.

 

 

Fear of breaking the routine.

 

Fear of not knowing what the future holds.

 

Panic at the change of schedule

 

Difficulty with novelty

 

Sensitive to tastes and other sensations.

 

Flashbacks, in which things from the past seem to be present, causing the person to laugh and cry.

 

Frequent flashbacks make it difficult to have present interactions in a timely manner.

 

Vague words are not good for him.

 

He is not good at surprises.

 

∙ Not good at understanding people's feelings

 

∙ Not good at loud noises

 

Need to improve intestinal environment

(It is said that the type of lactobacilli in the intestines of people with autistic tendencies is low. This can lead to poor bowel movements.)

 

This is my child's case,

 

I thought it was natural for him to want to stay at home as there were a lot of people at school.

 

 

It also gave me a chance to think about what “normal” is.

 

 

I was made to realize that there is no such thing as “normal” and that “normal” is uncertain.

 

I was very lucky to have had the opportunity to broaden my perspective.

 

 

I went to childcare circles with him and parent-child classes when he was an infant.

 

I hoped to help him grow as much as possible, but at the same time

I felt frustrated that my child did not speak as much as I expected,

I also felt depressed when I compared him with others around him.

 

 

I tried to hold any problems and my difficulties all together by myself, and it became more and more painful.

 

 

 

However, when I looked at my second son,

 

-He is very particular about what he does.

-He is not good at understanding other people's feelings

 

 

But he is a very gentle child at heart.

 

-If I feel tired , he sometimes cover me with a blanket.

 

-When he sees a fight scene in a cartoon, he told me that he doesn’t want to watch it because he was scared.

 

He is very sensitive and kind.

 

 

However, due to his brain function, his obsession gets in the way and it would causes panics

And he can be misunderstood.

 

 

The reason why I do not say “autistic son” is because autism spectrum disorder itself does not mean my second boy’s personality.

 

The personality that the second son has comes first, and I mean he happens to have those characteristics.

 

 

Therefore,

I say “second son on the autism spectrum disorder and mild intellectual disability”.

 

 

My second son has been out of school for a long time because of a major trauma for him.

 

He has now graduated from junior high school and is not sure what his next step will be.

 

But he surprisingly expressed interest in trying a short homestay with us in New Zealand.

 

I believe that his challenge will light up his own future and also help

mothers who are struggling to raise their children and children who are having a hard time in school.

 

The school visits will be made mainly by adults,

and the mission of my second son is to do a short homestay there.

It’s really a big step for him.

 

These are the major activities of this trip to NZ.

 

 

 

In order to step up to the challenge, we need your help.

 

 

Thanks to your warm support, we have now reached 47%!

We are truly grateful.

 

We need to reach 100% by 23:00 (JST) on April 30.

We would really appreciate it if you could share this project with other people and spread the word.

 

 

We cherish the encounters we had  through this crowdfunding and the lessons we have learned from them.

 

We will give the warm support back to society through our activities, and we will continue to give back to the community in the future.

 

Thank you for reading!