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

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!

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

Skiing

With two girls looking forward to their ski holiday at Christmas, behind my “oh kids, it’s going to be great” smile, I have a lump in my throat as large as a tennis ball!!!

ADHD, ASD and a varied amount of sensory issues for my boy to deal with and I am asking him to put on a pair of skis…..gulp!

Zak has amazing balance so the actual skiing shouldn’t be a problem but he feels every label, sock seam and every inch of every shoe that comes into contact with his feet!

So the list of my concerns….. Too many layers of clothing, too hot, too many people, tight boots, could Zak’s lack of proprioception take the whole nursery slope out in one hit? Will the lifts trigger his anxiety and the one that stresses me the most…..thick socks = thick seams!!!

Aware that my worrying is going nowhere fast, the only option I have is to take Zak to the Chill Factor in Manchester!

I book a lesson during a quiet time and allow plenty of time to get clothing hire, boots and skis! Zak is excited and after he has questioned every member of staff he can find, I manage to get his boots on him. The main problem is the helmet and the chin strap is distressing him slightly and I am amazed this one detail didn’t make my list of worries!
I de brief the instructor on what to expect in the hour to follow and off they go…..

Zak arrives back to me one hour later with streaming snotty nose and a great big SMILE!

He may have 0% attention skills but his balancing skills are outstanding and topped with the no fear factor, my boy did good!!

Relieved and now looking forward to our hols……..once again……proved wrong and proud of him!

20141024-154401.jpg

Medication

After spending a year deliberating medication for Zak, I decided that when the time came it would be for Zak and not for me. When I saw that his work was being hindered by lack of attention and when he was ready to move on……. And not a moment before. Not when I felt I could not cope with another day in the life of Zak and certainly not for some peace…..however tempting it has been.

I have reviewed his school work this week and saw for the first time the ability he has, but what starts off as capable ends in unreadable. After a day of tears and questions, I made the decision to put Zak on a trial of medication. Only during school hours, not at weekends and not in school holidays.

The earliest appointment with the team that look after Zak is April…… Don’t you just love the NHS!!

Then just as I had things all sorted in my mind, Zak produces this piece of work and leaves me doubtful yet again.

On a lighter note….. Well done Zak……I am so so proud of you x x x x

20140208-202811.jpg