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……

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…….

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…..