Programme Update

It is 12months since I started fundraising for Zak and what a year it has been!!

Zak’s programme has cost £29,200 so far. The majority has been raised by ourselves, my family, the generosity of another family and the rest by fundraising by me and my sister and kind donations from friends.

This money has allowed me to train and set up a home based programme for Zak, daily OT exercises, 3 monthly visits to an autism specialist and weekly special needs tutor.

Zak has loved his therapy room where we have been able to use his motivation to bring him on, reducing meltdowns, increasing communication and allowing Zak to thrive in an environment he feels safe and in control.

His daily exercises which are tedious and relentless have shown a 24% increase in brain function in 9 months (without any intervention this would be expected to be 2%)

Zak’s autism specialist makes sure Zak is on the correct supplements and the rest of his health is in tip top condition.

As for Zak’s tutor…..what can I say…… I was told he would be unlikely to read…..he can read the newspaper!!!! 1+1 =5…..he now knows his number bonds up to 10….

We are overjoyed with Zak’s progress and none of it would be possible without this fundraising.

We are about to go into our 2nd year of our 3 year plan and we would like to expand Zak’s therapy room sessions, taking on more workers so Zak gets more social interactions with different personalities.

His daily exercises and weekly tutors will continue and we would like to include some cranial work by the fab Phillip Owen in Gatley.

Zak will leave his current school at Christmas and after a long battle will start at a high functioning Autism School in Church Lawton. Watch this space on the progress I believe he will make in an environment which is correct for him.

Our next fundraising is our September walk of the Monopoly Board in London and I thank anyone in advance who is able to donate…..

Lots of Love & Hope

Trish xxxxxx

http://www.gofundme.com/l5l994​

http://www.gofundme.com/l5l994

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

 

Cool To Be Kind

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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.

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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.

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I tell my kids that when YOU are kind, the main beneficiary is YOU!

Be Kind…..Always

Always be a łlittle kinder than necessary.

Help spread the word…..it’s cool to be kind 💙

xxxxxx

All You Need Is Love

image.jpgI 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!