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….
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 🐟
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!!!!!
Well 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.
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.
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!!!!
Thanks for reading xxxxx
While spending a morning ironing I have caught up on all the reality trash tv I have missed!!
It occurred to me that the message we are now sending our kids is that it is cool to be unkind.
This is of huge concern to me, having a child who is vulnerable to this kind of behaviour. I cannot express enough the importance of the messages we are sending out to our kids and as social media and reality tv is letting our us down, I ask you the parent to give another message.
I am not asking for your child to devote their whole time befriending the “odd” kid in the playground, I know more than anyone how challenging this can be. A simple hello, smile can be enough to raise the self esteem of another.
I ask you…..Would it really spoil your child’s party to invite that kid to their birthday? What would have little effect on your child’s party has huge positive impact on these kids who are left out of…..everything!
Yes I said everything.
A lot of these kids go through their whole childhood without one single friend.
Imagine….that level of loneliness, never feeling noticed or accepted and watching a bunch of kids around you having a nice time. No you can’t because it unimaginable….but it is real!!
On a typical day in our playground I can count 4 neuro typical children who acknowledge my child. There are over 400 kids in our school!!! I am so thankful for these 3 little stars….even when my child blanks them, the next day, there they are again with their warm smiles and open hearts. You my darlings will go far ❤
There is a great website https://www.randomactsofkindness.org/kindness-ideas which gives fab ideas on how to incorporate kindness into their lives.
I tell my kids that when YOU are kind, the main beneficiary is YOU!
Always be a łlittle kinder than necessary.
Help spread the word…..it’s cool to be kind 💙
I try to only write positive posts regarding Zak but sometimes feel that I am not always being truly honest and sharing our more difficult times.
After putting Zak to bed last night my hubby had to pick me up off the kitchen floor……sobbing!! I am so grateful to him, he never asks any questions to what this time has sent me over the edge, he’s just there.
Zak’s best friend (only friend) is away from school this week and Zak finds this particularly challenging. At bath time tonight he told me that at playtime he is OK being on his own as he can “blend in” on the adventure playground or just kicking a ball. However eating lunch in the hall he struggles eating alone. He then proceeded to tell me he asked a few boys if they would like to sit with him, one of which replied……why would I want to sit with a boy like you???
With a heavy heart I explain to him that kids can be unkind and these kids are only 9 and can’t possibly understand how his magic little brain works and they just have different interests, that I’m always in his heart and to be proud of who he is.
I have to admit there is the unkind part of me that wants to march into the playground, hunt down the kid, pin him down and give him what for but what is that really teaching our kids.
If everyone’s first response was one of kindness all the other responses would pail to insignificance. When you are kind, the main beneficiary is you! When you are unkind the main beneficiary is you.
After 10 minutes of crying in Dave’s arms, I dust myself down as I am no use to Zak by allowing other people’s actions to hurt me so deep.
I go back upstairs and explain to Zak that all that matters in this life is being loved. You can have a hundred friends and be lonely. You can have success and be lonely. You can have money and be lonely.
You can never have love and be lonely.
Zak, you have a strong, loving family who adore you, you are such a lucky boy!!
There are 10 of us in your family who cheer you on all the way and that my gorgeous boy is like having a silent army behind you!