It’s the differences that hurt

I started writing this post in late May this year. Mostly to quietly vent. I’m not sure if I ever intended to publish it. But I feel I should. It’s important to be honest, with myself as well as everyone else.


I’ve been ruminating on this post for a while, and I suspect that it will be a good few days in the writing before I hit the publish button to be honest.

We all know that I have my two kidlets:

And

And I love them both to death. I do. I would both die and kill for these two. I have been a mama lion for #1 Son over the last year or so, and will continue to be for as long as he needs or wants me to be. But, can I admit something?

I get so tired.

It’s so hard. So so hard. And half the time at least it’s just not his fault or anything to do with him as himself. He continues to be one of the kindest, funniest, sweetest boys that anyone would be lucky to know.

But it’s his condition. It’s his disability (and I bloody loathe that word).

He is not a standard child. And this world is set up for the standard. For the “normal”. And everyone else is left to sink or swim.

TT is growing up. Every day it seems she does something new.

And she is blowing right past him

I don’t mean like for like now, at almost six he still ahead of her, but at their comparative ages she’s miles ahead.

  • She plays with toys.
  • She has proper imaginative play.
  • She is capable of playing on her own.
  • She wants to play with her brother. She idolises him if truth be known.
  • Her language skills are amazing
  • She has concepts such as sharing down. Admittedly mostly when they benefit her but she’s got them.
  • Milestones such as crawling, walking etc she already blew past him with.

There are more, so many more, but these are the ones that stick in my head.

It’s almost daily that I will look at the hus-creature and say:

He was never like this.

Or

He never did this/that.

And I wonder if he has somehow been short changed by my just not knowing that he was non-standard.

How did I not know? Well for a premature child and a boy, he was hitting all the relevant milestones within the age-appropriate ranges.

We didn’t see a problem until he first started formal schooling.

I worry for him. I worry about him. If I, as his mother, can get upset and frustrated


And I do, believe me I do


Then how will the rest of the world cope? How will he cope with it?!?!?


And that is where I stopped. I couldn’t carry it on.

I think my pain, worry, fear is quite obvious no? But, I’m pleased to say, that things are once again on the upswing.

He’s had a few knocks since the start of the school year. For example he started leaving class again, particularly after we got back from England. However that was two weeks ago, and he’s getting better.

I still haven’t had to visit the new Principal (which is great) and he’s making great strides in his reading, writing and math.

I’m just so proud of this kid.

He’s a trooper. He’s my best boy. And I will continue to be the Mamasaurus that he needs me to be.

He got that star in his first week and we have also had another since.

Martin Luther King Day

I’m not sure whether to wish people a happy one or not.

It’s an important day of cultural significance and I felt it should be marked.

So we had a lovely family day today. We:

  • Went out for lunch.
  • Baked cookie-brownies.
  • #1 Son played with daddy on his computer games.

We think I might have been too enthusiastic with my Kitchen Aid and overbeaten the brownie mix. I’ll learn! The kids enjoyed them anyway, and that’s all that matters. *

#1 Son also had his second full counselling session today. He seemed to enjoy it. He did lots of drawing, and his counsellor was impressed with him.

We do not push or pry with him. Both the hus-creature and myself firmly believe that it’s vital he feels and believes that it is a safe space for him, and that we will only be told what we need to be told, or, what he chooses to tell us.

She will send me notes, hopefully tomorrow, and will send a letter to the school with how she is forming a diagnosis by the end of the week.

She did mention that he was able to accurately depict six separate emotions on faces – I could have burst with pride/relief at that.

If he is still proved to be “on the spectrum” I will deal with it, but if he’s not? Life will be infinitely easier for him. So I cannot apologise for wanting that for him. **

TT continues to alternate between “cute as a button” and “truly demonic“. And it’s impossible to guess where she will fall.

New phrases include:

  • I want it <thing>
  • I get it <thing>

The standard “no”, “my do it” are constant and it’s draining.

She pushes boundaries and rules so much more than #1 Son ever did. She’s bright, stubborn and goddamned exhausting.

And she can count up to eight, and can manipulate jigsaw puzzles on her tablet, and is coming up with names for things.

And has discovered a love of Coraline. Of which I approve.


*I will keep telling myself that darn it.


**But please know I will never love him any less, or be any less proud of him – it’s a complicated set of emotions.

Parent-Teacher Conference

We had our first one for #1 Son last night.

I would be lying if I hadn’t been approaching it with at least a modicum of trepidation.

But honestly? It was amazing.

They have kept such good notes on his progress, both educationally and behaviourally.

He is improving. Slowly, gradually, but it’s visible and it’s there.

Perhaps the most important takeaway?

HE CAN READ!!!!

 

Honestly? I didn’t think he could. I knew he knew his letters, but stringing them into words (at least at home) is something he apparently couldn’t do. I now know it’s wouldn’t.

Busted kiddo 😂🤣😂🤣😂🤣

He is getting a lot of 1:1 support with the paras during centres, and when that happens he does well. But at the moment he doesn’t have one of his own and he’s one in a class of twenty. So they are trying, gradually, to scale back and seeing what he can cope with.

Basically it’s data gathering to bolster their bid for extra support for him. That will either start or happen next Tuesday at the Special Education meeting.

I am behind them 100% and fully intend to say so. Apparently having parental agreement and support really helps.

I would walk through fire to get him the help he needs, so let’s hope that the relevant professionals are on the sensible side and that I don’t have to go full on mama bear rage mode on them.

Or worse. Be British at them 😂🤣

His teacher also said that cognitively he is exactly where he needs to be. That he’s smart and funny. That he’s kind hearted. He’s also a perfectionist and sensitive.

She’s a true angel she really is.