Musing after some time away

LETS RECAP

My last entry we were enjoying a lull, an unusual calm, its ongoing to an extent. Both boys still have their moments, but its all manageable, nothing has really tested my composure. Our routine is good, our melt downs are few and minor. We still get no sleep ๐Ÿ˜ด we are in a pretty gentle tide right now. I’m still waiting and preparing for the storm.

EVOLUTION OF PRESENTATION

8 year old looks very close to getting his official diagnosis now, his quirks are more evident daily and he’s become very aware he is different to his peers, which is heart breaking when your child tells you he has no friends and no one likes him because he is weird. He feels like an outsider. Football, something he loved last year, is now too challenging, the other kids are more self regulating and he still needs direction from the side line, reading the other players is too much. I think his football days are numbered โ˜น tennis has been suggested, but not sure how I feel about providing a weapon. Watch this space…..

NO ACTION NEEDED

Smallest rainbow was reviewed in school by the family support worker from the national autistic society, his provision is perfect for him, which considering he’s mainstream school and bilingual, is no small achievement, the right school doesn’t always look how you think it would. After going agaisnt the special ed grain and keeping him mainstream, this is just what I needed to be reassured I made the right choice. School are pretty thrilled with the report too. We are also up to 95% attendance ๐Ÿพ๐ŸŽ‰ Celebrate the small things.

DONT OVER LOOK THE NON RAINBOWS

The two neurotypical kids are doing well, they are also enjoying this semi calm life we currently have. Mum (me) has more time to connect with them, as she is not constantly putting out the fires (metaphorical thus far) of ASD siblings. We have the teenagers love of drama, and the preteens awkwardness and pre puberty conversations, all without wrestling a mid melt down child, or someone hanging off me screaming.

SOMETHING FOR ME

After giving up work to project manage the various services we access, as well as the boys needs, this current lull has allowed me to return to doing some voluntary work, It’s most rewarding and enjoyable I must say. Only a few hours a week so far, but who knows what comes next……

The calm before the stormย 

We are having a lull. Both boys are simmering along nicely, the first week back at school was hard, the melt downs the aggression, the axiety and behaviours from both. But since the 2nd Tuesday in, everything seemed to click into place and has been going well.

Thats not to say life is easy, when special needs parents say things are calm at the moment, we dont mean silent kids, sofa snuggled and cupcakes. We mean, no one has lost their shit, broken anything, hurt anyone, made mamma cry. They mean, they are exhausted at the end of the day, the micromamagement needed to achieve our calm is exhausting, but we are not at crisis point at the moment. We are not putting out fires, we are preventing them. But we are poised ready to do battle should those sparks make flames. Ever ready, ever waiting, for the storm to arrive…….

My kids are not brats…….

All parents face the day when their little cherub is having a bad day, and you get judgy looks from the general public.

Special needs parents face these situations almost every time they go out. Its hard work. You want them to have a good quality of life, but most outings are very stressful. Be kind if you see parents having a hard day with their child, you have no idea what they face each and every day.

We were recently on holiday and I took my children on a mini costal cruise. A new experience for them, and one I hoped they would love, as I fondly remember my days sailing in my youth.

It did not go well.

Eldest seemed to like it, but was very much in her own world.

2nd eldest got sea sick as we hit open water. Green faced and head in a bag sea sick.

Rainbow 1 loved being on the water, but had some major anxiety going on. Same questions about sharks and the titanic (thank you school) asked 30+ times, rather taxing to say the least. A nervous tummy also required a few trips to the toilet.

Rainbow 2, found it all a bit too stimulating to be honest, and was flapping loads. Throw in 20 odd toilet trips in the 1.5hr boat trip, because taking a pee on a boat in choppy waters is just sooooooooo exciting and has to be repeated with great regularity.

So rough sea, walking like you have had a right skin full, 2 high maitenance kids needing taking back and fore to the loo, 1 vomiting child, and a teen who likes to eye roll every time you ask her to hold/watch one of her brothers as you cant be in 2 places at once.

Then you get the judgy old trout who after tutting non stop for 30mins, decides to comment very loudly, on how children should not be allowed on the boat if they are going to be such brats.

She was politely  informed in no uncertain terms, I’d take a boat load of ‘brats’ over one bigot anyday. At least ‘brats’ have a reason for being how they are, bigots are just intolerably ignorant for the hell of it.

We did not let her spoil our experience, despite the sickness, the rough sea, the many toilet trips and an ignorant old woman. The incident did however make me think, maybe life for special needs families wouldnt be as stressful, if people were just a little kinder and accepting of our children, and dare I say it, offer some help or encouragement……….

Lets talk laundry

We are a family of 5. Thats 5 laundry baskets. Plus 5 beds. Plus 4 sets of uniforms (they each have a fresh uniform each day) and 5 peoples worth of towels, EVERY WEEK. In theory, 2 loads a day Monday to Saturday, and Sunday for ironing uniforms.

In reality, I’m drowning in laundry and ironing. And as we are about to go on holiday for a week, I’m frantically washing and ironing enough stuff for us all for the trip, and neglecting the usual ever full baskets, which will greet me on my return from a week of non relaxation. 

So does anyone with a larger family, have any tips on defeating the laundry monster? Without paying the cleaner an extra 3 hours a week to tackle it for me?

Thankful for good friends

So on the whole, I try to keep a positive outlook on things. However, some days just really really suck. Today was a sucky day, hell the whole week kind of needs to do one.

Today though, I just needed to scream and shout and be negative about the things that are bringing me down. I’ve been struggling a lot recently with my smallest rainbow, his behaviour has been especially challenging for a few months now, and I’m just totally drained. I’m finding the adjustment to a new financial situation hard going, as well as a crappy week of general adulting problems, that involve hemorrhaging money I dont have, in many directions.

So it is much appreciated when you message a friend to say you are frustrated, and they call and let you vent. Then offer new perspective to your issues. It sure beats the box of wine I was planning on using to recalibrate my mojo.

When life gives you leomons, my it also give you someone who can help throw the buggers at your bad mood, and help to turn your frown upside down. Heres to good friends and staying sober ๐Ÿ˜‰