Monday 30 May 2016

How to get through a 10hr day flight with ASDouble Trouble!

We are about to set off on a 10hr day flight to Florida to see one of the top doctors for ASD. With our twins. Who have ASD. 10 HOURS PEOPLE!!!

We have the ipad ready to go with as many apps as we can find, iphones at the ready and snacks galore but I've
created the mother of all toys to entertain children on a plane but my list is geared towards little one's with needs. There's no chance colouring or play dough will keep them going - we need sensory and highly engaging toys...and of course minions. 

Here we go:



Giant Minion Sticker books -we are going to stick stickers all over the plane. Sorry Virgin.
£3 Amazon


Minion Hats - thank you Primark £3 each


Tattoos!! We are going to decorate daddy's face. I especially like this one. 
Primark £2



Light up fingers £2 Tiger


Moustaches - who doesn't love a moustache! Tiger £2


Tiger - this one may not be a hit but worth a try - they'll love the noise even if they can't work it £3


Masks! Tiger £3 - I'll do the colouring and they'll do the wearing. 


One of mine loves numbers so a calculator is very exciting. And it's flourescent purple which glows -oh yes a clear winner. Also, numbered erasers shaped like animals...another few minutes gone £2 each.


Second hand V Tech camera - they can take their own pics of each other and drop it as many times as they like. £8

Yum boxes for their food ( in line with the Reid diet) £24.99 Amazon


Gel glow in the dark skeletons £3 amazon - we plan to stick these on the windows. Again - sorry Virgin!


 Melissa and Doug Scratch art £2.99 Amazon 


They love playing around in daddys flip flops so hopefully they'll be excited to have their own.
 £1 primark


All wrapped up in Minion wrapping paper - yes we'll have a whole bag of toys to carry onboard but we will have busy and excitable twins rather than bored and grizzly twins...she says. 

Fingers crossed it's enough to see them through!!!

Friday 27 May 2016

A BIG thank you!

It's official. We have the worlds kindest and most generous set of friends! 

It was fast becoming clear that the boys needed a little more help than we could offer here and we were tearing our hair out that despite spending thousands of pounds on tests and supplements, diet changes and toxin removals we weren't seeing the changes that we should have. 

We had heard of Dr Rossignol a long time ago and we were desperate to see him. He is one of the top ASD doctors in the US/world and has been highly recommended by the mums i'm in contact with. One of them tells me that he helps her son in to managed recovery after just 4 months. i'm not seeking for recovery (although OK let's be honest, I would give him every penny, my life and soul if he could heal my boys), but I would love for him to take proper conclusive tests on them and to be able to analyse them for us. We know the boys have huge gut issues, mito dysfunction, copper elevation, suspected pyruluria, possible lyme disease, severe speech delay, heavy metals in their blood stream, sensory issues and many other issues but to have someone to test properly and help us treat their issues would be life changing for us. 



We have remortgaged our house to the stilts and we spend every penny on our gorgeous boys - so we should. But, the trip to USA to see Dr R is costing thousands and after several very teary nights I set up a Go Fund Me to see if our friends would be able to help us in raising money for the trip which we so desperately needed.  We set the target at £7k. It was reached within a couple of days. Absolutely mind blowing! Matthew would call me telling me that yet another friend had donated and another and another - I was pushing the boys in the buggy whilst he was telling me and I remember having tears rolling down my face falling on to them! "Mummy, I'm all wet!".


With every donation that came in, we were one step closer to our once in a lifetime opportunity to visit Dr R and to getting some answers. We now have our target and more meaning we can get the boys some of the better supplements that they need to thrive. We are absolutely over the moon and of course so thrilled to be going! Our friends have shown such generosity and kindness and I will be forever grateful to each and every one. THANK YOU to you all xxx





We are however absolutely terrified of the 10 hr day flight and of how the boys will cope on such a long flight so I have prepped a bag full of hourly presents to keep them going. Once we land and get to our house that'll be mission 1 accomplished. The blood tests will be awful as per the norm but at least they will be short lived. I have promised Matthew that I won't burst in to the room telling them to "get off my child" this time nor will I give the nurses dagger looks. 

The real challenge will be their 24hr EEG that they need. Epilepsy needs to be ruled out as it's so prevalent in children with ASD. Although the boys don't display seizures, it is possible that they could be having absent seizures meaning we can't see them - it can look like they're zoning out but if it turns out to be seizures then they need treatment. 

For this test, they will have nodes glued on to their heads and their heads will be wrapped in bandages for 24hrs. No big deal for me or for a lot of kids but for little one's with ASD the sensory issues come in to play and having bandages/anything on their heads can be excruciating. 

We have been practicing a lot with the boys so they get used to the sensations and so far we have reached 3 hours! We'll keep doing it every day until our appointment and hope that all our practice helps them to stay calm throughout. We are so nervous about the tests and the havoc that it could cause but so grateful that we get to have it done in the first place.


Once all the tests and appointments are done, we will finally be able to untie the knots in our stomachs! We will both be cracking open a bottle once that test is done that is for sure! We are so excited/terrified to be going on this journey and so grateful to all our incredible friends who made it happen.

We owe you everything - thank you xxxxxxx













Wednesday 25 May 2016

Yep I swore...again.

This week we heard that after a long battle, the boys will be allowed to repeat a year at nursery before starting school! 


HAPPY BOYS!!!


I have been passionate about this as we see the boys change completely when they are with children their own age - they can't keep up and either walk away and cry or resort to romping with each other. Children their own age talk a lot and they talk quickly - the boys can't process the information and it's starting to effect their confidence. It's been a fight from the start but as with every battle we face we embraced it...(and in reality we didn't sleep until it was resolved and then collapsed in a heap after we got the news!).  We got letters of support from the boys amazing team of therapists as well as video evidence of them playing with a child a year younger and then with a child the same age. 

Apparently I was the first mum to ask for this video to be shown in the SEN panel. I was definitely the first mum to swear in our meeting with the Ed Psych too but i'm getting used to firsts!! Even though I asked for the video to be played in the panel it was another 3 phone calls, multiple emails and yes more swearing before it was confirmed thanks to the head of the case managers who agreed that we live in a world of multi media and yes of course they can play the video. Such a breath of fresh air to hear these words! Thank you Wendy Bollsover! 

                     Can't stop them from smiling right now!!
Turn around in the car to see these two holding hands! Best buddies xx

When I received the Ed Psychs report the day before the before the SEN panel, I stayed up until midnight tearing it apart point by point. It wasn't the Ed Psych's fault - she was following her testing criteria but the system itself is just absurd. No consultations with the boys 1:1 workers and any remark about their emotional wellbeing was complete speculation. Why aren't the parents points of view taken in to account? We know our children the best . Three visits to nursery are meant to determine the rest of their lives with no regard for the people who know them best. Inappropriate comments were included in the report as well as inaccurate research papers. 


The  boys with their best friend and cousin  - Luca. Love him for being so patient with them and for always being so tolerant when they rugby tackle him instead of talk to him! 


One comment that stays with me in our meeting with the Ed Psych (post my tears) is her comment of "Don't worry, if your boys go to school, there will be others with higher needs than them". Brilliant. That makes me feel just great. I'm not really in to comparing my kids needs with the needs of another but if we're playing that game then no it doesn't make me feel better!! Frankly I don't care one bit about their grades, I care about their emotional happiness and wellbeing. Whether there are kids with more needs than them at school is irrelevant and not a competition and frankly makes me want to help those other families! 'Cue more tears'. 

I definitely wasn't the first mum to fight for their child to repeat a year at nursery but there must be an easier way to come to a decision here. Even with my extreme preemie twin boys with ASD: (twins are known to develop much more slowly as they have shared attention and boys are known to develop much more slowly girls), born at 26 weeks (extremely premature, not just premature), with ASD (developmental disorder) we had a battle on our hands so I hate to think of how much other parents will have to fight. 

Visit from Godfather Chris who gave up a whole afternoon and brought them a gluten free organic whole foods bag of treats! 


There's a lot in the press at the moment about the pressures children face at school and how we are crushing them we are academic testing. Surely we can ease off children like mine who are already at a disadvantage? Why put them through the emotional turmoil of starting school when they are already struggling with their current setting? We don't have an age restriction for University but for some reason school is rigid and no one seems to know why...even the Ed Psych!

More Cranial from Miki

We are one of the lucky ones to be able to give them this opportunity and we are absolutely thrilled. They deserve this and I of course plan to help them as much as possible in therapy, diet, love and kisses! Love and kisses cures everything afterall xxx