Finding What Works For You

20200522_092037The challenge is that with the neurological condition my daughter has, most things feel weird to her.

She’s oversensitive.

In her case, it’s a matter of experiencing what’s known as a sensory overload.

Certain fabrics feel weird on her skin.

Including wearing face masks.

I can’t fully begin to imagine how she sees the world.

But I can always try.

~ Musa

Taking Control Can Be Scary Sometimes…

It’s my day off.

And guess what am I doing?

I just powered up my work laptop, and started going over my work emails.

My mind wanders to places and people I shouldn’t be wandering towards, whenever I’m idle.

Even though I miss them, terribly.

I always used to wonder how cool it would be working from home.

I should have been more specific in my wonder because I got what I wanted but at a cost.sethu

Not to mention the change of lifestyle my daughter has to endure, with all these restrictions in movement and not being able to go to nursery school.

And now with me answering customer calls and, now recently, managing the customer inbox, while accommodating her autistic and ADHD mannerisms – over and above this pandemic, is doing a number on me.

The hammer on the nail was when I received that “pink envelope,” – that pink email in my case.

The company will not be extending my contract after the 31st of May 2020.

20″plague” it should be called.

 

In life, there’s a lot of things that are beyond your control.

The trick is not focusing on what is beyond your control, but focusing on what is.

My life lately has been me focusing on that. Shit I can’t control.

I’ve heard this before, and I’ve also mentioned this before, that life is more manageable when you grab hold of things you can control.

Control is an illusion, but an illusion that gives life purpose, I think.

So what can I do now, to help put myself in a better position in the future?

Hebrews 12:11

Those are the questions I should be asking.

Self-empowering questions, and not self-defeating questions.

~ Musa

Christmas & Autism

Yesterday was crazy (25/12/2019).

It was a family function, and unlike the wedding trip we took with my Omu who is autistic, this time it was a Christmas family gathering.

With her sensory overloads and hyperactivity, it was difficult doing my best to manage her. But more importantly I also had to manage my emotions as well.

Especially with the “abantu bazo thini” (what will people say) pull going.

We are also giving her CBD Oil, two 0.25 mg drops of it.

One at 7am.

The second at 7pm.

All in the name of better helping her manage this special technique most call autism.

Especially when it comes to reducing anxiety.

We were on risperdal before, to reduce how her brain keeps firing which increases her hyperactivity.

So this change of medication added with attending a family function was obviously going to make this “try out” day an eventful one.

My Omu is 3 years of age and is particular in what she likes. Strict maybe. Borderline obsessive?

And she will keep playing repeatedly once she finds something new to play with, like repeatedly.

Did I say she enjoys repetitive play?

New things that she can predict or control their outcome brings her as sense of calmness or peace, perhaps?

Whatever she gains from it, she will keep stimulating that dopamine hit for as long as she can.

Things got intense when the pool was involved.

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My daughter loves water guys.

So the family that was hosting us had a big people pool but also got a kiddies pool as well.

She got in the kiddies pool with a life jacket we had borrowed from her cousin (just in case she decided to be adventurous and run into the big pool).

She was in there with her cousin, then her mom decided to join them.

Good times.

Splashing away and all, but her mom was controlling the amount of splashes so that Omu can still have fun, but to also manage the intensity of the fun so our baby doesn’t get too overstimulated. Yeah, it’s a big thing in the Autism world.

Over stimulation upset her. See this vid to see what I mean.

That’s her standing because she loved the splashes but it was a bit overwhelming and at the same time she was really enjoying herself, that’s why she’s still in the pool and didn’t run out.

It’s was beautiful.

Until my baby started shivering.

A World War was going to begin, because you remember I told you she likes repetitive play?

So “evil” dad and “evil” mom had to stop the fun she was having, for the sake of her health.

To her, the unexpected interruption of her play, made her go berserk.

Some were concerned, and only a couple of her aunt’s tried to help. She was having a full swing meltdown.

This is the first time they saw her act this way in real time.

We forgot how sudden changes make her upset, and now since she’s non-verbal, her way of communicating her distress is through throwing a tantrum.

Or is it a meltdown? I need to find what the difference is.

The specialist suggested we give her a heads up before time we change from one activity to another.

Preparing her, or even doing a countdown like as in telling her that in 5 minutes time, we would need to stop playing with water because we are getting cold.

So that it doesn’t come as a shock to her.

Another challenge was that her other cousins were still having fun playing and yet we wanted her to stop.

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The injustice of it all, could have been another contributing factor to her protest.

I took her out, kicking and screaming and slapping, only for her to move over to the big people pool.

Joy…

Also filled with the older kids having fun there, making it even more desirable for my sensory seeking little Beasty.

Had to negotiate with her because se was standing at the edge of the deep end of the pool, while we were following her around, so I moved her to the steps at the entrance.

I got in with casual my shorts and all, so I could ensure her safety.

See, even though there were people that could have watch over her in the pool, I decided to go in with her because we’re so used to not relying much on people when it comes to her care and safety.

You should have seen her dip her one foot in, then out again.

Getting the feel of the water texture and temp.

Then she tried it with her other foot, and out again.

So fucken cute that was.

Eventually she got both in.

And all else was a blur. She was my world.

Nothing else existed.

Baby was getting the shivers again.

Lucky, the backyard had a mini play area. So I took her there to sort of “quarantine” her.

So it was a mini picnic of sorts.

Not a bad Christmas at all, even though we had to fight whenever she wanted to go back to the where all the fun was.

The day taught me a lot.

Tiring as it was.

Sometimes I need to let her discover the world her way and not be too much of a prison guard.

I also saw a lot of me in her as well.

Which is very fascinating.

Her mom did a lot of damage control in the background and made the day a success.

She does most of the work when it comes to raising Omu so she did deserve a break for the day.

Me and Omuhle Siphosethu Tshoaele wouldn’t be where we are without her.

As nerve-wrecking as it was, it was a good day.

Hiding her from the world doesn’t makes sense.

Reminds me of that Float movie on Disney+.

~ Musa

Cards & Autism

It’s a painful experience realizing that your can’t do shit to immediately solve a mental health issue faced by your child…but don’t have mental health issues...by anyways this post isn’t about me…

…or is it…

Ok, I digress, come back.

Ok, then again I hear there a asshole parents out there who don’t give AF about their kids, I’m referring to those that do.

Omu has an ASD (autism spectrum disorder) barrier as well as ADHD (attention deficit hyperactivity disorder) and another barrier that makes it difficult for her to correctly speak out the words registered by her brain.

Fun-times.

My sister says I’m overexaggerating with all my concerns regarding these barriers.

That’s just one too many disorders for my liking.

It all began when my wife started sending Omu for speech therapy to ID if baby was in fact delayed in her speech.

Mommy’s intuitions were confirmed when it was discovered that baby was in fact delayed in the development of her speech in accordance to her age.

Baby was 2 at the time and still babbling, with her not being able to speak clear words or speaking a minimum of 2 word sentences.

After a couple of weekly sessions, the speech therapists recommended we take Omu to see a neuropediatrician.

And that’s the person who flipped the script on us, diagnosing her with severe ASD and ADHD.

I had an idea what ADHD was, but had no clue what ASD was.

It’s just that, whatever the acronym, I was flooded with emotions on…why her…

Non-autistic parents or friends or strangers do their best to assist and “comment” on how best we could manage Omu, advice not applicable to her because (God bless their souls) they have no clue how to best to interact and care for some who is on the spectrum.

So there’s this incorrect belief that me and mommy are all alone in the struggle, because the support system around us don’t fully understand the impact of raising an autistic.

So going to workshops, support groups, social workers who specialize in the field, and doing research on the barrier is giving us the foundation that we need to better equip ourselves in the journey to understanding baby and how she sees the world.

Holy shit, you should see how far Omu has come.

And you then add the occupational therapy she is doing, to assist her brain to establish the link between thought and speech, it brings tears to my eyes.

Every child develops at their own pace. It’s just that the gap I see when compared to toddlers her age…that shit hits home.

What she lacks in speech though, she excels in finding other ways to communicate, by grabbing you by the arm and pointing in the direction of what she wants.

She also kicks ass on the iPad, before it got smashed to bits, playing those matching games and navigating through the apps, I need to get that fixed.

My mom got her some matching board games as well that she successfully completes after a few tries.

Omu and her random screaming and/or laughter associated with her spectrum (those used catch me of guard). Her fine motor skills are in the process of developing to the level that we would like them to be. She’s making progress.

So as much as she would tell her brain to move her body in a certain way, when the message reaches her limbs they come out as something else.

So instead of placing a plastic cup filled with water on top of the table, like she would from her other independent water drinking attempts, she spills the cup on the floor.

Or when it comes to feeding herself. She can scoop the food, but the spoons travels many a places before it reaches her mouth.

Or the other time she had a meltdown on the floor and then started banging her forehead on the floor. I’m still recovering from seeing that. I mean, how do you respond to that?!

Her senses are heightened. Senses her brain cannot process correctly, at times. Sight, smell, touch, hearing data all coming to her at the same time.

To try and limit being overwhelmed (sensory overload, the call it) she would cover her ears and hum (aka stimming) to herself.

EJ8tavoWoAIA3m7Probably leave the environment and go outside where there’s less for her to process.

I need to get her noise cancelling headphones.

She also stims when she’s upset with something or hungry or thirsty or in need of a (brief) hug.

And mind you, she doesn’t like to be touched but welcomes hug every now and again.

On some “make that hug bra, I’ve got things to do.”

She can’t “read” emotions so when she pushes you aside when you’re in the way, girl does not give AF how you felt about that.

Her objective was achieved.

And when you protest, she looks at you unbeknownst to her of what you are faffing about.

This makes it hard for her to interact with people or make friends, apparently that’s an important skill to have…making friends.

They call it social skills…oh well.

I think that shit’s overrated but then again I too might need to get my head checked out for an American-defined disorder that they can be placed on, with its corresponding medication of course.

Uncle Sam needs to get paid you see?

Healthcare scandal or not, these are the cards that mommy and I were dealt with, and we need to see how we fare with them.

“It’s not about the cards you’re dealt, but how you play the hand.” – Randy Pausch

So that’s been my 2019.

Eventful, but I feel I ain’t seen nothing yet.

~ Musa

She’s Autistic…

She’s autistic.

I didn’t know how to respond.

What it a bad thing?

Was it a disability?

Holy shit.

What the fuck.

They’re wrong.

My baby is fine.

She just needs time.

Why are they messing up with her development?

They must leave my baby girl alone.

She’s not going to taking any fucken meds on their diagnosis based on their American-based research!

Not my child.

It’s my fault.

It’s her mother’s fault.

Are my ancestors turning their backs on me?

Is God punishing me?

Why her?

Why me?

She’s just a child.

What does this mean?

God will never give you a burden you cannot carry.

~ Musa

Morning Meetings with Sethu

When it’s my turn to take my 2 year old to daycare, we drive by the cemetery.

I point to it, and tell my little Viking, strapped in her baby seat, that we are all going to end up here.

And so we must live the best life we can.

Like the good doctor said,

“don’t die with your music inside you.”

My version to that was, don’t be anyone’s bitch.

But I think I’ll wait until she’s older, like when she’s 3 maybe, before I use that language with her.

Until then, don’t die with your music inside you.

~ Musa