Holidays

After spending a week in Sardinia with 3 special needs kids and not being able to manage and control all situations it got me thinking!!

We had meltdowns, anxiety and full on rudeness and very early on in the week discovered that we could spend 7 days spinning plates and returning home exhausted or just let that shit go and drink gin!!

It was THE easiest carefree week we have ever had in the past 10years….refreshing, empowering and we left Sardinia more refreshed than we have ever been!

Deciding to try this technique once again, here we are in Isle of Wight. Apart from having “BOTHERED” tattooed on my forehead, we couldn’t be doing a better job of it if we tried!!

Not catching every strangers eye to apologise, explain or worry has put me us in a tranquil state and I bloody love it!!!! So much more time and energy to enjoy this lovely little island, laugh and more importantly talk to my hubby! It has seriously been a little bit of “hi…where have you been hiding”.

So to any special needs parents out there who feel exhausted with the constant management of your child and the world around you I urge you to go somewhere no one knows you, with people who you will never see again and just do it! Let people stare, whisper and be judgemental….who cares!!! If you can’t afford or face a holiday, do a day trip. You will feel empowered, strong and in control of your responses. You will never be able to explain your situation, child and difficulties in one sentence so don’t even try. You don’t need to do anything.

Remember….those who matter don’t care and those who care don’t matter.

You’ve Got This

Trish xxxx

One Year On….

One year on since we stopped all medication for Zak so here is our update……

My fear flying to Spain last year knowing that Zak had just taken his last Ritalin was softened by knowing a had a secret stash packed deeply in my case and convinced myself that I could sneak him one and bribe him not to tell his Dad. My plan the following morning didn’t even get off the ground as the realisation of Zaks inability to keep a secret dawned on me. Pure honesty comes with Autism and this has its plus’ and minus’. I adore how he has never told a lie. Telling the man at the Esso garage he looks like Mrs Brown and needs to learn his manners, not so much.

Anyway I spent the whole of last summer being a child phycologist watching his every move, analysing him and having a constant game of ping pong in my head.

The downs to no meds….

Zak gained 3 stone
No 3hr morning respite

The ups to no meds….

Morning alertness
Better communicator
Healthier eater
Better complexion
Toxin free

Ok the 3 stone has been hard to handle, however he was 1 stone underweight to begin with and he has grown 9 cm so in my head he was 1.5 stone over so over the past 3 months we have addressed that and managed to get 18 pounds off him but as I try and join him as much as possible I too have benefited from this!

I have dealt with the lack of respite with a dog! This has proved the best therapy for Zak. Reggie has increased his responsibility, taught him boundaries and given Zak a purpose!

His communication has improved significantly. He is more able to tell me his feelings and what he is struggling with and learnt many techniques to help him including breathing exercises and yoga!

I trained as an aromatherapist 29 years ago but not practised for the last 20, Zak has reignited that passion and I can honestly say they have been life changing for him, school actually want them as part of his day! If you come within 3 foot of me I get you with a rollerball for any ailment.

Zak has also had is Sats this year and I am proud to say I blankly refused for him to participate! How can u take a standardised test for an anything but standard mind??? You wouldn’t ask a fish to climb a tree!! Zak may not know his maths anywhere like his peers but he would give any Olympian a run for their money at javelin!! He’s proving to be a little Jamie Oliver in the kitchen and his knowledge on coronation street characters dating back before he was born is immense!! Please let’s starts measuring all the special qualities of our kids and not just the standard ones!!!!

The bottom line to Zak being better on or off meds and my advice to anyone who has tried them and failed is this….

You never really have a full picture of what your dealing with on meds. They mask the child, his abilities and his personality. How can we give them skills to deal with their issues if you can’t see what they are? I plan to do a protocol for any parents considering the alternative route so please get in touch with any questions.

In the meantime it really is the best decision we ever made and as for Zaks non standard mind….who wants to be remembered as bloody normal anyway 🐟

WORLD AUTISM AWARENESS DAY

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All week Zak has been on the brink of a meltdown, unhappy, angry and generally out of sorts.  Not allowing him to totally dictate our Easter we ventured out for a family Pub Lunch on Saturday.  After  10 minutes of playing musical chairs navigated by Zak everyone is pretty confident that he will settle (next to my gorgeous Mum and opposite me). I on the other hand am not convinced.   A look he gives me, the way he orders his food and his unsettledness tells me he is anxious and unhappy.

Armed with colouring and my iPhone we make it through our lunch.  Zak kept making an exaggerated sniffing noise, like you may have when full of a cold.  The lady who was sat behind him (she was sat side onto him) tutted, bitched and then to really make her point stood up and moved her chair so she had her back to him.  My first reaction is one to leap over the table and shame her ignorance.  When I am on my own with Zak I do not hold back on educating these people, however not wanting to embarrass my whole family I say nothing.  This allows me the time and space to reflect on why someone would be so rude to a young boy.

Why would she know he had Autism?  I too have huffed and puffed at what I believe to be a badly behaved or rude child.  You don’t know…..until you live it or know someone who does.

Zak woke up on Easter Sunday so poorly with a sore throat and bad cough so was obviously feeling rubbish the last few days.   His understanding is different to a neuro typical child and he is  unable to communicate his exact feelings and can do this via his behaviour.  Maybe the sniffing wasn’t some annoying tic but more of something not feeling quite right in his throat.

So as today is World Autism Awareness Day I pray for people to not have a total understanding but to try, please try not to judge our kids who are struggling with the world around them.

If they appear to be giving you or me a hard time…..they are having a harder time.  If us Mums appear anxious…..they are more anxious.  If you are struggling in their company trust me they are struggling a whole lot more in yours!!!!!

Love

Trish xxx

MEDICATION UPDATE

images.jpegWell its that time of year again when we have a solid 6 weeks with Zak and without the craziness of school runs, pack lunches and the daily grind, it gives us the time to refocus, regroup and plan for Zaks year ahead.

Hubby hates Zak on medication, believing that we are not dealing with any issues Zak may have, masking what is really going on and asked me to consider a summer without it.1cfd44c4ba720a6fa4cdd86bf774b10f--emoji-faces-smiley-faces.jpg

Zaks medication has given me 4 hours of peace a day, taking him down a couple of notches which allows me to do all the above with some kind of normal.  One hour after taking it, my home resembles some of what a house with 3 kids in it does……busy!!!  Without it……carnage!!

The comedown from Ritalin is unpleasant, Zaks mood adjusting from “on it to normal”. We get anger, frustration and general misery and I think in my mind this is what we would encounter all day without it.  Never-mind Zak becoming dependant on it, it has been my crutch.

Zak takes the minimum dose of his medication but every CAMHS appointment we are offered higher, being told due to his growth he “could probably do with more” and then a minimum dose of melatonin every night to counteract the Ritalin to allow him to sleep.  All this is handed out to you with no parent warning on the bottle……GUILT!! Ritalin is a controlled drug, which basically means “a potential for abuse or addiction”.   This is not just your baby, but your baby who is struggling to cope with the world around them and although I am not against medication in the short term, stratagies and coping skills need to be taught.

I totally believe it has played a positive part of our journey, 3 years ago when Zak was unable to sit and learn and take in knowledge that he would so desperately need in his younger years.  However since then he has grown, we have worked so hard with his home based programme that maybe just maybe it was worth a shot.

So one week ago we boarded a plane with an extra suitcase full of aromatherapy oils, plug in vaporisers, crystals, supplements and rescue remedy, repeating my mantra…..we can always change our minds.

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What are the changes I have seen?  His appetite is back in full force and I have to keep a constant eye on it.  Although he has more energy in the morning this is consistent throughout the day, taking no dips or sudden outbursts.  His OCD is definatly better and the glazed look has gone.  He has managed to still do his independent reading and lego building and his attention is no different and I believe his engagement is better and the guilt from me has vanished.

So will I continue on this holistic lifestyle for Zak or crumble???  At the moment I will say we will continue but I maybe more equipped to answer that at the end of the summer holidays!

You can continue watching Zaks summer on Instagram – tothemoonandzak

And one last thing……don’t forget your own medicine………WINE!!!!

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Thanks for reading xxxxx

 

Road Trip

RoadtripI have travelled the country with my little man, from healers in Wales to a homeopath  in Cornwall and all the counties in between. I love our Thelma and Louise outings and Zak’s knowledge of every vehicle on the road could win me a place on mastermind!!

My next trip is taking me to America to take part in the Son Rise Programme and this time I am on my own!   Flying to New York and then getting a train to New England to spend 6 days learning a method that is going to help all of us understand Zak better and connect with him more.

Someone said to me “for gods sake Trish, why go all that way? Zak is high functioning, doing well, why don’t you just accept what is?”

My reply……

We all want our children to be the best they can be, however when you have a child with special needs this is more of a need than a want.

I love Zak just they way he is but if I somehow have left a stone unturned that could possibly enrich his life, in my eyes I have failed.

And finally, you never, ever give up on your child, however small or big they are!

So to my best boy…… Have a great week with Daddy, enjoy not being doused in Rosemary oil and having reflexology EVERY night, eat gluten & remember……I love you to the moon and back xxx

Medication Update

This is the one subject I struggle with the most.  It took me three years to be convinced to give it a try.

i beat myself up, had endless sleepless nights and drove my nearest and dearest demented with my doubts.  But the quote…..YOU HAVE TO REACH A CHILD TO TEACH A CHILD finally won me over and we began our Ritalin adventure stroke nightmare.

So twelve months on……..

Positives..

Zak has stopped bouncing off the walls.

Zak has come on leaps and bounds at school.

Zak has focus on most things he does.

School are over the moon with him.

Negatives

Zak now has more time to process his feelings which 99% of the time are ones of anger, frustration and sadness.

It has uncovered more autistic traits.

His anxieties have heightened.

He has lost 9lb in weight.

I am now at a crossroads.  His progress at school is fantastic but I do not feel comfortable.  I don’t like giving him a controlled drug.  This puts Ritalin in a category of methadone and pethidene.

Even with the positives I don’t believe it makes Zak a happy boy and I am now trying to convince doctors to let him try the non stimulant medication,

My head says Trish, stop over-thinking, Zak is doing well, it’s not forever and just stick with it but my heart screams…..stuff the GCSE’s, I want my happy, bouncy solider back!!!!

Xxxxxxxxx