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 😴 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 ☹ 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 🍾🎉  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. Maybe there will even be some chance at meeting that special someone who can replace the electric blanket on keeping me warm at night. Stranger things have happened hey, the nuns life is not one I wish to lead forever…..

The calm before the storm 

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 😉

Not at all like 2 peas in a pod…………

Peas, do you know how many different brands of pea there are? We are currently on our 15th type of pea. The search continues……..

Let me fill you in. My littlest rainbow has some funny food aversions. Doesnt do mashed food, doesnt do mixed up food, food covered in gravy or pasta in a sauce. Custard on deserts, icecream with bits in, or multicoloured ice lollies. Each thing has to be seperate from everything else, and clearly identifiable for it to even be considered for tasting.

Most of all, he doesnt do green. We dont know why, but he hates green. Green food, green drinks, green sweets, green crayons, green clothes. All things green cause melt downs. He HATES green.

Except in school. In school, for his favourite teacher, he eats peas. Not just 1 or 2 peas, he eats a full portion of peas. I saw this as a gateway to greenness. I know he eats peas for his teacher, its a start, lets eat us some peas.

It appears however it’s only this one teacher. If anyone else chaperones his lunch, he doesnt eat peas. All the kids know his quirks, E does not eat green. But he also now KNOWS I know he eats peas for this lady, so I’m persevering with the pea trial.

I brought a bag of peas, cooked them, put them on his plate. He refused to eat anything that shared the plate with the peas. He HATES green, he HATES peas…..

 

Me: You ate peas for Miss ****** baby, eat peas for mummy…

 

Him: NO!

 
Me: But you like peas, you ate them in school with Miss ****** didnt you??

 
Him: Those peas ok. No like them peas.

 
Me: These peas are the same honey, just try 1 pea for me, please…

 
Him: ………………….1 peas goes in………………..
YUK, spit spit spluter. They not nice peas. NO.

 

For 15 different brands of pea (who knew there were that many) we have followed the exact same routine. No peas are the same as school peas, and school peas are only edible when they are shared with a certain teacher I think.
To pea continued………

All children are special, some are just extra special…..

FB_IMG_1501142692078From day one, nothing went as planned or as expected, but he always takes everything in his stride. No matter what struggles or challenges he faces each and every day, his cheeky smile lights up a room, and his laugh can melt any heart.

I’ve learnt a lot from my extra special child. I learnt acceptance. I learnt there is always more to learn. I learnt to appreciate the small things more. I learnt to value every single achievement, no matter how trivial it may seem. I’ve learnt the best time to go food shopping is 5am (fully stacked shelves and no long lines at the till)

I’ve also learnt that as parents, we need to teach our neurotypical children, to be more accepting of those who are different. Our children look to us when experiencing something for the first time, and our reaction shapes how they respond in the future.

So instead of telling your child not to play with, or stay away from, the child who flaps and squeals. Explain their brain works differently, and they do things that other children dont, but thats ok.

I know its hard if a child is rough and hits or pushes in excitement. 9 times out of 10, the parent of that child will make them say sorry, give a hug, or otherwise aim to correct things, explain their child didnt mean to hurt your child, they just dont know the social norms yet. Give them a chance to learn, to go about it better and play with your child. Encourage your child  to be kind, forgiving, accepting.

When at a birthday party, and you know one of the other guests has additional needs, dont sit back and watch your child enjoy stressing that child out by chasing them and getting in their face, we all heard the child and their mother ask your son to stop. Make him stop.

Feel free to ask special needs parents questions, we dont mind. Anything that help society understand our children, makes the world a better place for them.

So yeah, another lesson I’ve learnt, people are not always kind. Some parents of neurotypical children are brilliant, others seem intent on raising the next generation of ignorant, bullying arseholes.

So while you tell your kid to stay away from, or be mean to mine because they are different, I tell my children, people like you, are not worth knowing.

Redefining my rainbows

What is a rainbow baby?

A rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come.

I have 2 of those. My 3rd baby, my 2nd son, was stillborn in 2008. 14 months later I gave birth to another son, and 2 years after that I was blessed with a 4th son. My rainbows.

But these days, the rainbow has taken on a new meaning for our family. No longer is it only synonymous with the definition at the top of this post. It also represent a whole other world too. The world of ASD (Autism spectrum disorder)

At 2 years of age, my youngest child was mute. We had been in awe of the baby who never cried. Through meningitis and all the painful procedures that come with the diagnosis, treatments and recovery, he never cried. His first 18 months of life, suffering chronic GERD (gastroesophageal reflux desiese) biopsy, ph studies, NG tubes, apnea, lung infections, medications. He never cried. We had the most placid quiet baby ever.

But at 2 when you are asked how many words your child has……..ummm none. Is he doing this, or that?……..no. The health visitor gives you this look, because you ticked to say you have no concerns, you start to see that your ‘good’ baby, is in fact a 2 year old with global delay. His small size allowed you to fool yourself that he was still a baby, not a toddler. A toddler who wasnt hitting development milestones.

How did you miss that, you have 3 other children. Your mind switches back on to the 4.5 year old destroying the clinic room, the flustered health care assistant struggling to engage him in a game, asking if he is always so lively. Of course the baby is quiet, he cant compete with that. Its obvious. Isnt it?

Referals go in, assessments, questions, speech therapy, babble therapy, questions about your other children, ‘do they exhibit signs too? Signs of what?

As day to day life goes on around you, are thrust into a world you had visited, but were not a part of, now it is your world too. The piece ‘Welcome to Holland’ suddenly has a whole new meaning to you.

Its overwhelming, you are lost and dazed, you are finding your way in the dark, being helped by those who have navigated this road before you. MAGIC by name, MAGIC by nature. I’d still be fumbling in the dark without them.

We are now almost 3 years down the road. 3 years of fighting for support, services, input. You feel like a leading expert while still being clueless. We are still awaiting official diagnosis of ASD for the youngest. But guess what, he talks some now, not always easy to understand, but he is getting there. I waged war on the local Authority to get him 100% support in school too, what a difference that has made. We are also making tracks in getting the now 7.5 year old the help and support he needs, and again, awaiting official diagnosis.

So welcome to our rainbow rollercoaster, we are still under construction, and I’m sure it’s going to be a bumpy ride…..