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!!!

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

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

Let them eat cake!

One of the most painful and frustrating things about having a child with ASD is often their restrictive and limited eating. The worst suffering from failure to thrive but the majority eat nothing but hard, crunchy foods. There are some however doing amazingly - but that wasn't us.

When the boys were little all they wanted were crackers, yoghurts, very dry, almost burnt foods which therefore became even more crispy. This ironically worked well for me as it fell in line with my method of cooking...the smoke alarm just meant dinner was ready in our house! We were so happy that they would eat anything as their eating issues were so bad that we would let them eat anything - biscuits, breadsticks, cake - anything!


Cheerios were a staple part of their diet


I used to cry and cry pulling my hair out as they just wouldn't eat any goodness at all. I never knew food could be such an emotional thing. Food is our fuel and if they aren't eating good food then they can't grow and thrive like other children. Sensory issues play a huge part in eating difficulties in children with ASD and eating 'soft' foods with a mix of textures is like eating eyeballs to them.


I would watch my niece and nephew demolish their chicken and rice with a side of veg - I was amazed at their innate ability to chew and swallow all the different textures without gagging. My two would scream if I put a carrot stick near them or if i asked them if they wanted a piece of cucumber. Literally as if I was throwing poison in their face.

This is as close as we ever got to eating a piece of vegetable following NHS advice.

We were very very lucky in that they would eat puree - I could sneak in tons of veg so I was happy they were getting enough goodness in them but making it every day for 4 years was driving me absolutely mental! Our food bills were at £250 a week just for them. We would spend hours prepping their veg and it became a real issue in our house!

Veg for the week..#blisters!

We were advised by their NHS S&L therapist to ask them to kiss food then when comfortable doing that ask them to lick it and eventually they would want to eat it themselves. I'm sure for some this works but for my guys it was a complete waste of time. The boys were no closer to eating food than I was to flying to the moon. We were also advised to make the puree slightly more lumpy each time but that just didn't work for us at all. It had to be all or nothing. We tried for years to get them comfortable enough to touch, kiss, be around food but it was no way going in their mouths.

Using Celery sticks as marble run!

Pretend play with Grandpa 'talking on the phone!'


Both boys had been checked and they were medically capable of eating food - it was their sensory issues getting in the way. The boys were extremely fussy eaters - so much so that they had been referred to the Evalina Clinic in St Thomas' hospital - their issues were severe. Although they would eat some solids, they just wouldn't eat any foods that weren't crispy or hard.

After they turned 4, I decided enough was enough. The monotony of wash, chop, steam, puree (repeat EVERY. SINGLE..DAY) was more than I could handle so I emailed Leslie (my mum friend in the US for advice) and an amazing twin mum Fiona and asked her how she got her boys to eat solids as they had the same issues as the boys. Fiona's boys had also been given the medical go ahead but they were more extreme than the boys and she had to sit with sheets over their legs as her boys gagged and vomited as they got used to eating solids for the first time. We had no idea if the boys would be the same so I prepared myself for the worst.

Note the towel on Fiona's husbands legs incase her little one throws up.



Well done little man!!!! One of Fiona's boys eating proper food!!

We followed her direction which was a gentle ABA technique: One tiny bit of carrot first and then they can have their puree. The boys kicked off at first - crying, whining, running to the other end of the room. Never did I force feed them - this would NOT have worked and would have made things so much worse. I offered them a reward after every tiny tiny tiny bite. The reward was a food they were comfortable with and one they loved. Joey gagged a couple of times trying his new food but got used to the new textures very quickly. We built this up slowly and gently with a lot of praise and genuine excitement so that they were having more and more little pieces of food before their puree. I would be so excited that they had eaten, chewed and swallowed a piece of brocolli that I would whoop and run around the room screaming and shouting - I think the boys thought this was for their benefit but there is nothing greater than seeing your child eat goodness in it's natural form, just like a 'normal' child!! The boys would laugh and laugh at my reaction - they didn't need to ask me twice. I even climbed on top of the table once and did the running man!!

Joey not so impressed with his first meal. At this point I could have stopped or gone back to just giving them puree but I held firm and we are all reaping the benefits now! (not that using a divider plate isn't ideal - we soon changed to a normal plate after this photo was taken)

Eventually they were eating so many bits of veg that we got rid of the puree. They were cross at first but I offered them a lovely butternut squash muffin instead (trust me it was delicious!) and they were very happy with the exchange! The boys are now eating anything we put down for them! Absolutely anything. In total I think the process took about 6 days. All the boys food is made from scratch from organic foods. It takes time but not half as much time as the puree'ing and seeing them enjoy and eat proper food makes it all worthwhile!

It took them about 1.5hrs to get through their plate of food at first as they weren't used to eating and chewing. We used other food they liked as their motivator (parsnip chips, celeriac crisps), one piece of cucumber for one parsnip chip - this worked so well and now we are down to 30 mins to get through a plate of food!

 Chickpea burger with sides

Caulliflower tortilla with pesto (all homemade)

Thanks to Leslie and Fiona, it's been 3 days since they stopped eating puree and I am still crying watching them eat. Totally in awe of these little guys who a week ago couldn't bear to be near a carrot stick!! I don't really call out to other people in my posts but I desperately want this to give hope to any other parents struggling with their little one's and food. If this helps just one other mum/dad then I will be delighted! Maybe even do the running man on the table again!

The most important thing to note is that the boys are now LOVING their food - more than puree. They enjoy the different textures and ask for more! If I can do it then you can too :)

A Grandparents Love

We are a very lucky family to have support from both of our parents. Our boys are challenging and knowing that we have the support of our families means the world to us. We know that the boys diagnosis hasn't been easy for them either and I thought it may be helpful to others going through the same thing to see how grandparents of little one's with ASD cope with the situation. The boys adore all their grandparents for different reasons and each one has offered us help and support in ways that we could never have imagined.

Below is a post from Nana, Matthew's mumma describing her thoughts on what it's like to have a grandsons with ASD.

"Sophie asked me to write a grandparent's side of the boys’ story so far and Matthew told me to write from the heart! So here goes......

Xander and Joey entered our world very suddenly and very, very early on 14th January, 2012.......we will never forget the frantic phone call from Matthew asking us to get to the hospital as the twins were coming......I dashed home from Oxford with half a haircut to collect Bill, and we got to Kingston in time to be there for Matthew.....Sophie was otherwise engaged!

As a parent all you ever want to do for your children is keep them safe and make everything all right by “waving a magic wand” - since the early, and sudden, arrival of Xander and Joey into our lives, I feel I have failed to do that for Matthew.  This feeling of failure on my part, I think, has left me questioning my contribution as a parent, and as a grandmother, and has left me unsure of my role. As a result I am tentative towards the boys and there is no doubt they pick up on this (children can sense this and the twins are no exception).

The first time I heard the word autism linked to Xander and Joey I went between sorrow for the two gorgeous boys, who had already had such a hard start to life with their prem birth and 4 months in intensive care before coming home, and anger at the unfairness of it all, and I wept for them and for Matthew and Sophie.  

When the autism was confirmed we were thousands of miles away on our way to Australia and, not for the first time, felt completely helpless as we could not be there to support. This feeling of impotence, of not being able to help in the way I instinctively wanted to, of being unsure of the “right” thing to say, or do, continued for some time. Then I thought I can't do the usual grandmotherly things of practical help so what can I do ........I decided I needed to understand what autism actually is and once I began to read about it I began to understand so much of the boys’ behaviour, and the reasons behind how they are, and, most importantly, to understand what Matthew and Sophie were trying to do to help their boys, and to help them to reach their full potential.  

I hope this has led to me being a better sounding block, more supportive, not patronising – more of a grandmother!I love these little boys so much and just want to be the best Nana I can be for them.  Now I need to learn how to do it.

My admiration and pride for my son knows no bounds - and Sophie could not rise any further in my estimation as I have watched this gentlest of women grow into the most loving, nurturing mother any child could want - and the strength she has shown in fighting for her boys - a true tiger mother.

 We are all on a journey together and whilst finding out about our grandsons and how we can help, we are finding out about each other and we are certainly finding strengths in Matthew and Sophie that they probably didn’t know they had."