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."

A weekend away

One of the fighter mums in America has become my friend as well as mentor. She's helping me to understand complex issues that little one's with Autism suffer from.  I'm not going to lie and say that I understand it all but with her help, I'm on my way. She told me about CFD and how she visited Dr Rossignol in the US to help diagnose this in her son. After 4 months her son is now in managed recovery. I can't imagine the complete joy and elation that she must now feel but when I asked her this she simply said "I have so many dear friends who are fighting for their children - I need to help them, help you, to help your children. Then I'll be happy".  This is the spirit of the mums that I come across in the online groups that I'm a part of -  even when their own child is recovered the fight isn't over.


CFD stands for Cerebral Folate Deficiency - here comes the science bit: 

Cerebral Folate Deficiency (CFD) is a relatively newly identified disorder in which there is low 5MTHF (5-methyltetrahydrofolate) in the CSF (cerebrospinal fluid) but normal 5-MTHF in the blood.  5-MTHF is the bioavailable form of folate.   Folic acid is the synthetic form of folate and supplementing with it can often makes problems worse and not better.  These kids need the bioavailable form of folate.  When there is not enough, developmental delays can occur.  Symptoms can manifest as irritability, poor sleep, gross motor problems, seizures and developmental delay among other symptoms. You can read more about it here. 


No one tests for this in the UK yet - the man who discovers the FRA antibodies which determine CFD is in Belgium. Dr Ramaekers. But..the man who has taken on his studies and has recovered many little ones is Dr Rossignol. He is the most reputable and most successful doctor for ASD. but as taking a trip to the US is a huge expense we thought we would try our luck in Belgium first! 

Despite Belgium being in high alert for terrorists on the weekend that we had booked in to see Dr Raemakers, we went ahead with our appointment. We drove to France through the tunnel and despite a couple of hours hold up in traffic we got through just fine! Border control in Belgium was as thorough as expected (3 police men holding guns with fags in their mouths casually watching cars drive by). 

It was also the weekend of the Davis cup so all properties were fully booked up - we managed to find one last place available and my goodness did we love it! More of that later. 
We arrived late in the day so the boys had dinner and then it was time for bed - Joey wasn't at all well and asked to go straight to sleep which meant that he missed out on having a bath in Xanders gorgeous corner bath! I hopped in to keep Xander company :)




The next morning we had an early start and Matthew and I held our breaths as we began our journey to Dr Ramerkers house - yes house. Apparently holding appointments at your house is all very normal for doctors in Belgium! As we arrived we were relieved to find that he had a waiting room and all looked very professional. The waiting room was kitted out with toys which kept the boys busy whilst we waited.



Dr Ramaekers called us in and the boys instatsntly liked his office - there were a lot of doors to pull open and shut - result! Dr Ramaekers spoke to us for a while about what he was going to test for and took a lot of information from us - our family history and the boys birth and vaccinations. The time came for blood tests - crunch time. I had told 


Matthew that I would hold the boys during their tests as I had been through it all before a million times when they were babies - it was me who held their hands and I wasn't about to stop now. As I held Xander and listened to his cries, i got instant flashbacks of the most painful memories from their time in NCU and although I tried to hold it together I couldn't help but bawl like a baby. Xander and I were covered in tears by the time he had finished - I was an emotional wreck and suggested Matthew held Joey for his. Matthew of course hasn't let me live this down! So much for a fighter mumma! I hid under Dr Ramaekers desk with Xander so he didn't see Joey getting upset. Joeys veins were so damaged from the tests he had as a baby that he had to take blood from his hand but he managed it and Joey although not liking it, did a lot better than Xander - maybe because he didn't have a sobbing mumma holding him!

Dr Ramaekers took blood from Matthew and I too (Ok yes I lay down for mine - it had been an emotional day!).  Joey decided that he likes Dr Ramaekers and told him that he looks like Grandpa. In an effort to appease the look on Dr R's face Matthew told him that Grandpa was actually very young looking! An awkward silence followed but thank God it never lasts long with the boys around so we were all back to stoping the boys from opening cupboards and doors before we knew it. 

Dr Ramaekers is a kind and lovely man - he has differing opinions to Dr Rossignol in the US which we'll address when we need to. We have to wait 3 months for the CFD results as it's part of a charity study but they're vital so worth the wait. 

We left his house and finally felt the knot in our stomachs subside. We stopped off at a supermarket on the way home and bought ourselves a bottle of wine to celebrate the fact that we made it and the boys had been brilliant. 























Coming back to our little house was just perfect - it had been a long tiring day and we were both emotionally exhausted. The pent up anxiety over whether the boys would cope with meeting Dr R, the blood tests, whether we would find his house, if he was professional, if we would have any issues with all the time in the car (another 4 hours after 6 hours the day before). We didn't have much down time but the time we did have was well spent!


Matthews fire pit outside! (even in the pouring rain he decided that the Bear Grylls in him had to light it).


I lit the fireplace inside..much to the boys amazement!




 Having these blood tests means we can finally start to see what's going on inside our little guys bodies and start to try and figure out a plan. My heart knows that despite every effort, we are starting our biomedical journey a lot later than some and as we keep being told...early intervention is everything. But, we won't stop now that we're on it and I also know that we have been up against the odds with our guys and short of having complete nervous breakdowns we can't do any more than we're already doing. 

 Although Belgium was a stressful and emotionally draining trip - we felt like we had achieved something enormous. We also enjoyed our first family trip away! It was magical to be away just the four of us and we are so excited to do it again. I knew Matthews business would come in handy one day! Roll on the Snaptrips!  After all...the boys behaved so well in the car - why wouldn't we do more car journeys?!

 

Reid all about it!

Just like all the different doctors, nutritionists, and therapists we take information from, it looks like we have to do the same with diet.

GAPS diet was causing the boys quite a few problems - bloating, constipation, wind (they of course found this hilarious much to my embarrassment!)  and even more sensory issues. The fermented foods and broths weren't quite sitting right with the boys so we had to rethink. Having connected with amazing fighter mum Leslie in America on one of the Facebook Groups (Recovering Kids), she explained to me that GAPS can actually make things a lot worse for some little ones with ASD. We definitely fell in to that bracket. She told us about the REID programme where we totally eliminate all free glutamate from the boys diet, massively cut back on protein (which was causing protein fermentation hence the bad breath), be careful with fermented veggies (histamines) and up the fibre (get their BM's going and get rid of the toxins floating about in their systems!). She explained that Glutamate becomes an excitotoxin when its in excess meaning it overstimulates brain cells and nerves and can result in neurological inflammation and cell death.  It looks like due to their inflamed guts, they have become sensitive to phenols (Salicylates) so there are a lot of veggies and nuts we have to avoid. More studying and researching - trialling and monitoring of behaviours and reactions.



My little chef Joey trying a veggie pattie :)


We learnt all this and more with our Skype consultation late one evening with Dr Reid herself. An amazing mum and biochemist who had recovered her own daughter. So - we tweaked the boys diet again.

The boys diet is even more limited now than ever . One piece of fruit per day - a LOT of veg (mainly green) and little meat protein. Some nuts and seeds and a few eggs. Of course no grains or dairy and definitely no sugar. The boys are still stuck on puree for main meals but they eat healthy snacks now - all homemade and as organic as we can find. They are a lot less reluctant to try new foods which is just amazing! After three years of trying - they are finally becoming a little less afraid of food and no, this doesn't have anything to do with my cooking skills!




Xander wanting some of my frittata!

 It feels so awful to deprive them of the joys of tucking in to all the goodies I see other toddlers eating but on the other hand i know they're so deplete of the minerals and vitamins that these whole foods contain that I have to keep going. There's no going back now! I totally believe that this diet is helping them so as cruel as it sounds - getting all this goodness in to them is the only option we have. It's not easy - for any of us, but we are determined and fighting for the boys every day. We have a spreadsheet of their supplements which have to be given at different times throughout the day and they have quite severe consequences if we miss them. We have tonics, capsules, creams, all to to be taken in specific measurements away from certain foods.



Home made natural herbal teas.

Matthew and I so wanted to do the diet too but it's crazily expensive to buy organic food for a whole family. Instead we try and eat the same foods as the boys in front of them and no joke...we dive in to the downstairs loo when we need to eat something not REID legal so the boys don't get food envy! We have a secret stash in there. We go in there so often for a quick banana or sandwich that the boys must think we've got serious incontinence issues!



Home made coconut milk and below coconut crepes!




All the food prep takes a very long time and we try and pre prepare as much as possible. The boys get through a crazy amount of veg, nuts, seeds, (all nuts and seeds have to be soaked overnight and dried to get rid of any phytic acids and enzyme inhibitors) and natural herbs (my fave are pau d'arco, dandelion root, mushroom root, ginger, rosehips and nettle in a decoction) so you can imagine how much time we spend preparing their food!



Celeriac hash brown - delicious!

Fortunately, we had luck on our side again when we found our newest aupair Harriet. An Australian beauty training to be an Occupational Therapist specialising in children with ASD! Harriet is with us for 6 months and by the time she leaves she'll be a total pro in OT, ABA, nutrition, naturopathy and she also know the words to Mary Poppins having watched it at least 10 000 times! We are totally blessed to have her in our lives - it's a huge responsibility taking care of our monkeys and you need the patience of a saint. The boys love her and as well as thinking she's a wrestling buddy they also play such great learning games with her and have done so well with her by their side. She helps us with so much of the food prep which without I think we both would have gone mad. There's only so much chopping, peeling and bagging you can do before you flip!



3.5 days worth of veg for the boys!

For anyone thinking they can't make the jump to gluten free/dairy free/GAPS/REID diet because their child is too picky - please please let my boys give you faith. Our boys were very picky eaters before we did this diet and I spent many a sleepless night dreading the day we took away their breadsticks, crisps, crackers, burnt pizza and all the other specific foods they felt comfortable with. It was a huge step but so worth it. I know it's not that way for everyone and my heart sinks that I have friends out there who's little one's just won't eat anything other than the usual dry foods. I know that heart wrenching feeling of watching other children eating normal healthy foods and just wishing your child would take just one bite of something healthy. The frustration and hours spent doing messy play with food in the hope that they decide to put a little bit to their mouth. The time spent trying to injecting broccoli into a cheerio just to get some goodness in - I've been there! (ps this is impossible and insane...never try this!).


Butternut squash and coconut flour 'biscuits'

My boys wouldn't dream of touching, never mind eating a carrot stick before we started the diet.  There are hundreds of parents around the world making this leap and once you're there the taste buds change and slowly but surely your little one will start trying different things.


Bone marrow - so much goodness :)

There is no way the boys would have eaten roasted carrots, celeriac hash browns or corgette crisps (all firm favourites!) if we hadn't made the move to GAPS/REID.We were incredibly lucky that the boys ate (and still eat) puree but anything outside of that was just very dry to touch and crunchy to taste. If you have the energy and time to look in to a diet that you feel is right for your children then I promise it'll be worth it. Even Matthew took a bite of broccoli this week - now THAT is progress people!

My weird sausage pancakes!

A.B...eh?

Along with a change in diet I have also heard amazing things from a lot of other mums about a therapy called ABA. Applied Behaviour Analysis.

A lot of the boys issues are not only cognitive but behavioural. The behaviour is what makes life so difficult with the boys and stops us from being able to enjoy them and stops them from being able to enjoy so many things that other little ones take for granted. A post man knocking on the door could set the boys off, someone talking to me at a play group...anything that isn't in their control.

We can get through the day just fine as long as we manage them entirely and stick to their routine but any deviation from this is an exhausting battle and one that I just can't fight any more.  We are desperate now and thanks to our amazing parents, we are able to start the ABA programme.



ABA is expensive and intense. There is no way we could afford to do this without their help and it can literally be a life changing therapy if it works so we have huge hope for the future now. It finally feels as though we are doing everything we can for the boys and to find some kind of normality where we can enjoy being a family would just be incredible!

In typical Fox boys style however, they have already started to take the mickey out of the ABA techniques we are trying on them. In order to get the boys to wait for something quietly (instead of repeating the same thing over and over again until you want to jump out the window) - we were told to very calmly hold up our hand and say 'wait please' and just ignore any further whines. This has resulted in both boys coming over to us when we ask them for something, raising their hands and asking US to wait. They also do a countdown on us and I caught them telling each other off and telling each other to calm down nicely then bursting in to hysterics...I think we have some work to do before this starts to have effect!



As well as starting ABA we have got even deeper in to the diet side of things. I've joined 15k other mums in their plight to 'recover' their children from ASD by joining a group on Facebook called Recovering Kids. This group is filled with fighter mums. We spend every spare minute reading, researching, listening, speaking to doctors, looking at every avenue we can to help our children. There are a huge amount of mums on the page who have done it and have made it their mission to help other mums do the same. All of us scrambling for a spare minute here and there to learn more about this whole new world of biomedical research that has led to so many children recovering and coming off the spectrum completely.

We spoke to another doctor in America who believes that free glutamate plays a big part in ASD and through eliminating this, children can be recovered. This means eating only whole foods, lots of fats, reduced meat protein and an increase in fibre can lead to recovery - no need at all for supplements or anything else at all. Although this makes perfect sense, a lot of mums who have spoken to her and follow her protocol do still take supplements and add in other bits here and there from other doctors they have spoken to. There doesn't seem to be one thing that works for everyone. You have to speak to a lot of different doctors and pick up the bits that you think work for you. All of this of course whilst you spend every penny you have desperately seeking that one thing that works for your family. With my very limited biomedical knowledge I'm reliant on a lot of the mums in the group for help.



I'm learning about camels milk, Bravo yoghurt, red palm oil, ghee, cold pressed oil, the effects of phenols in foods, histamines in other foods, Ion cleanses, protein fermentation, estrogen in flax seeds, magnesium from pumpkin seeds, calcium in chia seeds, mito dysfunction, CFD and so many other things which fly around my head at 3am when I can't sleep!

I'm inspired by these mums and although it may be false hope I'm holding on to, I have to have hope. Without it I don't think I would be able to get out of bed in the morning. I am fighting Autism and I WILL win. Or..die trying but one thing is for sure, I'll never give up.

Although we haven't seen any significant changes in the boys since starting the diet yet, we are noticing a big leap in their love for each other.

They're  best friends and I love to see them walk down the street holding hands. Not because I told them to but because they decided to - their little faces as they run at each other throwing leaves at one another and squealing with laughter. We are so lucky to have these moments.  They're either holding hands, hugging, jumping on each other or standing on the sofa together singing in the mirror. Such show offs. They must get that from their dad...!