Proprioceptive Senses

In the evening, we went to a playground at Lorong Chuan. It was a simple playground but yet, the playground has equipments that help with balancing, climbing and most importantly, working on J's Proprioceptive Senses. More information on Proprioception can be found here.

I have lately suspected that J has Proprioception Dysfunction because he is sensory seeking, he has lack of body awareness and he gripped his crayons, glue and pencils very tightly and he would pressed it down very hard.

It is now a way of life that as his mum, we are slowly beginning to understand J's behaviour and why he behaves the way he behaved. Prior to this, there were lots of guessing on the reasons for his behaviour and triggers. After which, there will be lots of trials and error on the solution to cope with his behaviour and triggers, which could be very taxing and frustration on myself and his dad.


J loves this very much. I would swing him.
It helps in his balancing.

J loves to lie this on his tummy.
I did the same too and when J swung me, I felt some sensation on my head.
I guess that is the sensation that J likes.

J loves climbing up and down on this turnstile.
He loves to sit in it and I push him round.

Article: Raising a Child with Special Needs: An Interview with Mother Annie Ong

On 22nd Nov 2016, I received news of the passing of mummy Annie Ong, after a battle with cancer. She has 2 young sons who is in the spectrum.

As a mother, I can't help feeling sad and there were many thoughts that came to my mind:

• If it can happen to her, it can happen to anyone and it can happen to me.
• Just like her, I have a son who is autistic.
• If I were gone one day, can he take care of himself?
• Will he be able to survive? 
• What if he gets bullied?

The interview can be read here.

Based on the interview, we can understand that she has been through lots of challenges. Just as she might be able to celebrate her son's milestones and achievements, she had to fight another battle and lost the battle.

In life, there are lots of battles. In this arduous journey with J, we had to fight lots of battles. There were times we felt helpless. Some battles aren't worth fighting for but there are some battles, we had no control of. We can only leave it to God.

I pray for God's protection on Annie's 2 boys and may God take care and guide them, through their journey.

Stimming or ism

When we were having dinner just now, J started to have ism or stim. He was using his 2 hands to replicate how 2 lifts will go up and down and then, showing the lift door open and close. As "the lift" went up, he will announce the levels which the lift had reached.



His 2 hands were replicating how 2 lifts will go up and down,
lift door open and close.



Stimming Encounters

During Speech Therapy, halfway through his schedule, J would get off his seat, faced the wall, and then started to stim. He would pretend being the lift and just move his body up and down.

His other stim is verbal stimming. He would script from what he had heard when taking the lift or train.

What is Stimming?

When I first knew of J's condition, I had to do lots of reading. There were overload of information, new vocabulary and new meaning, that it overwhelmed me. The word "stimming" is one of them.

Stimming is a repetitive and self-stimulating behaviour, as what most therapists and psychologists believe, but based on the book Autism Breakthrough by Raun K. Kaufman, stimming is not a behaviour but it helps people in the autism spectrum, calming and self-soothing. It is usually what they can find familiarity in, making them feel safe. You can read more here and there is a video about people with Autism explaining what stimming feels like.

My thoughts

Most often, when I see J stim, I just let him be. Perhaps I would join in and participate in his stimming. There are 2 school of thoughts. Most therapists discourage stimming because they believe that it might encourage the behaviour. There are other groups of parents, like myself, whom we just let the child continue to stim.

In fact, for J, he stim, most of the time, especially verbal stimming and it can happen more often when J is having sensory overloading or when he is in stressful situations. Hence, I felt stimming is a type of coping mechanism for him.


Happy Stimming!

Speech and Language Assessment Report 2016

I just received J's Speech and Language Assessment Report from his Speech Therapist. His receptive language indicates a delay of 9 months and his expressive language indicates a delay of 1 year. Well! I know J's limitations. I guess it is common that most children in the spectrum has limitations. There were times when I talk to J or gave him instructions, I was wondering if he understood me, based on his body language, his reaction, etc. But yet, when I was reading the report, I can't help having my tears roll down my cheeks.

I ever read articles from some of the parents, when after they received results from their child's diagnostic assessment that confirmed their autism, they still cry, even though they already know that their child is in the spectrum, just that the child might not have undergone any assessment to confirm it. I finally understood how they felt.

As I recall, ever since I knew of J in the Autism Spectrum in Feb 2015, when have my tears not roll? Sometimes, even when cooking, tears just came rolling down my cheek. Sometimes, I just felt alone in this journey. But we know, we are actually not alone. There is Jesus, going through this journey with me. There are hundreds or thousands others, who are also going through this journey, with me. There are others, who had been there, done that, their autistic children has grown up. As an adult, they are now better able to manage their challenges. Life is much better. There are some, who are healed and these are the testimonies, that are my motivation. Cheers!

Playdates at East Coast Park

We went to the beach this morning, together with J's friends, N and B, from our neighbourhood. The 3 of them are same age. They played together since young.

J loves the beach, the sand and the sea. The sound of the waves is, in fact, very soothing, to him. Today is also an opportunity for J to play together with his friends. As usual, there wasn't much interaction from him.

Most of the times, J will just follow what others are doing. Yes! At least 1 skill less to work on - Imitation.

At first, J was away from the group. He was playing on his own. After sometime, I asked him if he wanted to join them. N and B were digging hole and putting water into the hole. Putting water into the hole seemed fun, so he decided to join them. He moved his things over and gladly took water from the sea and poured it into the hole.

 

It is fun on our part, to observe what the kids were doing.

 

Autism is a social-relational disorder. So we have to create an opportunity for them to interact (preferably in small groups), to play together and to be with people.

 

His Obsession

This was taken on 17th Nov 2016 at Marina Bay Sands Mall (MBS). This is one of his favourite place because there are fountains and lifts.

Yes! One of J's other obsession is fountains. He loves to see the fountains. Sometimes, I would wonder what is in his mind when he is looking at fountains. Is it the water flowing? Or is it the sound of water? Maybe the sound of water could be soothing for him.



Here he is... looking at fountains.



J loves to see the lifts at MBS because the walls are transparent.
Perhaps he finds it fascinating to see the inside of the lift.

Article: Why My Child Doesn't Look Like They Have Special Needs

I can so relate this article here. Through J, I realised the challenges of having a Special Needs Child with invisible disability. In the past, I only thought Autism as Autism, but after having known that J is autistic, only to realise that some behaviours are invisible because they looked so normal.

 

Many times, people told me, "J don't look autistic at all. Are you being paranoid? Was there a mis-diagnosis? Am I being too overly concerned." Well, as J has been with me 24 by 7, as months pass by, his symptoms were becoming more obvious.

 

Quote from the article:

When you see my kids, please know that they “look” normal because instead of playing with friends they were in therapy. Because we advocated for them and spent hours dealing with doctors and insurance companies so they could be where they are today. Instead of going on playdates or hanging out with other moms I was working with our kids at home and taking them to therapy. Special needs parents sacrifice so much and my kids are an example of that.

My kids may “look” normal, but when I look back to see where they were, I am so grateful. I am so proud of my kids and so proud of how far they have come.

The next time you see a special needs child that doesn’t “look” like they have special needs, I hope you remember that the reason for that is because of how far they have come and because of all the hard work it has taken to get that point.

And yes, we spend lots of time going to therapies, home intervention and early intervention and that have been a part of our lives.