Wednesday 28 October 2015

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...!






Mind the GAP(S)

The thinking behind autism and a lot of other illnesses is that the gut is largely responsible for the body's overall health. As the boys had so many drugs pumped in to them from such a young age their guts were badly damaged and as a result toxins were leaking in to their system and effecting their brains (and other parts of the body). The brain therefore can't function properly and this leads to all kinds of issues.

We are following the GAPS diet (gut and psychology syndrome) to help them heal the gut so they can start absorbing all the healthy foods in to their body correctly and their brain can then follow with being cleared of toxins. A lot of parents have had huge success with the diet and a good supplement programme so we are of course doing it.



The boys have big food issues which relates to their sensory issues. They only eat foods which are completely one texture - nothing too lumpy nor chewy. It has to be either very hard and dry or very wet and smooth like yoghurt so you can imagine the fear as we were told we would have to get the boys to eat chicken broth, fresh fruit and veg and NO sugar, NO carbs, No processed foods.  I always tried to get the boys to eat healthily but we used fruit flakes and other treats (yog coated fruit pieces) to bribe the boys to do anything so the thought of not having these was pretty scary! Leaving a play group to get in the car was done by bribing them with these treats, stop crying and you can have 'x', touch a piece of apple and you can have 'x', put your shoes on and you can have 'x', every step of their day was managed with treats so how on earth would we manage them without these!!

We cleared the house of any 'illegal' foods and filled it with fresh veg and fruit, chicken beef, pork and we made up their first batch of food. We made coconut kefir and bought fermented sauerkraut and beetkvaas, We cooked until late in the night and barely slept at the thought of the change that was about to come. How would the boys react to not being given their favourite porridge in the morning? Well...tantrums were of course there, as expected but overall it was a lot less painful than we thought!

We distracted the boys as much as possible with iPads and new toys we had bought especially for them and slowly but surely they started eating chicken broth for breakfast lunch and dinner. No snacks, no treats, nothing. After a day or two they started to detox - their energy levels dipped and they were whining all day. We both had time off work to help them get through the first week on the diet thank God - we would take them to a soft play area and they would just lie down as they were so depleted of energy. We would carry them everywhere and they would sleep a LOT.





We are now a month in and having completed the intro part of the diet with no hitches or reactions, we are on full GAPS. This means they can have a slightly more varied diet than broth but won't have any sugar, carbs, processed foods or even fibrous veg for at least two years. I was hoping they would start eating more varied foods like eggs so we could give this to them for breakfast but they are still just as tricky about food.

One thing about GAPS which I hadn't anticipated is the amount of prep it takes. We spend every other night cooking until late in the night, boiling meat for 3 hours then boiling the bones for another 10 hrs and finally streaming the veg in the broth is a long process! Never mind all the other trimmings we are trying to get them to eat alongside that. I spend a lot of time researching new recipes for things i think they may like - i spend longer cooking them and getting it wrong and then even longer getting it right only to find they won't touch it!

The first few weeks I was excited to wake up to see if there was any difference in their behaviour like I had seen to many times in youtube clips of children on the GAPS diet but we haven't seen any difference yet. We are looking in to having tests done to see what supplements the boys need as these can make a huge difference. Until then, we fight on!


Where do you take kids who love doors on a rainy afternoon? Homebase of course!






EHCP madness

We waited 8 long months for the boys to be assessed. Anyone who knows anything about children with special needs knows that early intervention is key so this waiting was just torturous. We were of course still having speech and language and occupational therapy sessions but with no effect. The boys couldn't understand a lot of what we were saying, couldn't talk properly, were still terrified of most food, were crazily anxious with people other than Matthew and I and just couldn't or wouldn't do things that most kids their age should be doing.



When the appointment finally came, I knew in my heart that we were going to hear the words we dreaded most. "Your sons are autistic". I did my best to show them off in the assessment - Look they know their colours! They can recognise numbers up to 10! They're so affectionate and loving, they're just scared, they sleep really well...no they don't eat most foods but hey, who needs food? Are you sure they're autistic??? Unfortunately the answer was a great big YES.

You think that once your child gets a diagnosis, you get given the therapy they need and you crack on. Wrong. You don't get given anything - you have to fight for it and even then it's minimal. I spent hours and hours researching everything I could find on autism as S&L and OT was just doing nothing for the boys. Seeing a therapist once every 3 weeks just wasn't enough and their approach wasn't working so I had to find a way to help them. Every second I had, I was reading and talking to other mums.

All of this was done whilst applying for their EHCP - the document you need to get them 1:1 help in nursery and school. The most important document they will ever have. If you do it incorrectly you end up with less support for your children or none at all. No way I was about to let that happen!



These forms were possibly even more heart wrenching than the diagnosis itself. There is a breakdown of each element of your childs needs. I had to write the form as some of the therapists who were meant to write it had omitted so much, got details wrong, their names mixed up and not done it correctly. Some parents attend workshops to learn how to do this but with the help of other mums and staying up until 1am for weeks I managed to do it. I had to go over each and everyone of their issues - there are many so this took a long long time and as you can imagine it was incredibly upsetting. I would close my eyes at the end of the night and all I could think of was "delayed development, autistic traits, sensory issues, behind, not reaching milestones" . I couldn't sleep just having to go over all their issues - my heart broke with every one of those sentences. I finally finished Joeys and as the boys have similar issues I thought I would copy and paste the form for Xander but I was then told I had to make it as different as possible to make sure they got a separate 1:1 assistant. Another few weeks of mental torture as I tore my other son apart!




I then led the meeting and we all agreed that the boys would have 1:1 so it was a huge shock that when we were on holiday we got the news that they wouldn't in fact be having 1:1 help. WHAT??! After a few frantic phone calls and more fighting on my part (and an amazing nursery head teacher and supportive case worker) we finally heard that we had got what we wanted. Help for the boys with 1:1's at last.






They start nursery in September and although I am dreading leaving them for the first time on their own, I know they're in good hands. it won't be the first time I've been in tears in public because of my monkeys but the thought of leaving them unable to communicate properly, not knowing their carers and seeing their little faces watching me leave just leaves me shuddering! I AM a brave mumma - I CAN do this....can't i?!



Now that the nursery is all sorted, we have started the enormous mission to start the boys on a diet which is designed especially for ASD. It's called the GAPS diet and it's insane. Insane but known to do amazing things for little one's like mine. It's totally hardcore but if there's a 1% chance that it will help the boys then my God we're on it!






Hope at last!



We decided that we would look for an aupair - childcare costs had gone out the window and we needed to save as much as possible to pay for private therapy for the boys.

Our nanny who had known the boys since they came home from hospital was incredible and it was a brave move finding someone new as they would have to be strong enough to look after our boys, be kind enough to show them love despite their challenging behaviour and also fit in to our house of controlled chaos!




I interviewed a lot of girls from abroad wanting to be aupairs - an interesting experience to say the least! There was Maria from Romania - her choice of outfit for the Skype interview was a bra and mini skirt. Although Matthew said she deserved a second chance when I told him about her, I was a little skeptical and moved on. Susie from Germany declared that she wouldn't tolerate bad behaviour and that she often locked the kids she nannied for in their rooms for hours until they stopped crying. Auf Wedersehen Susie. Maggie from Sweden told me that she thought children were a bit annoying and that she wanted to come over to see the sights and Estella from Spain told me a lot of things - none of which I could understand as she didn't speak a word of English. Just as we were about to give up we found Hope - Hope Ammen to be exact.

Hope popped up on my screen and I instantly thought 'Oh God, Matthew is going to fall in love with her straight away I can't possibly have her in my house!". She was stunning, not in a fake beauty pageant way but in a totally enchanting, natural beauty, I can't believe you're real kind of a way.
We started chatting and as it turns out we didn't even speak about the boys until well in to conversation - we had so much in common and her confident, kind, loving nature won me over straight away.




I picked her up from the airport a few weeks later and we clicked straight away. We had told her about the boys issues but nothing phased her. She dove straight in when she met the boys and they fell in love too. Hopie Poppins as she became known in our house spent 6 months with us and in that time she treated the boys like any other kids she had nannied for. She played with them in the same way, showed them respect and asked for it back. She took the boys on a trip in a fire engine (an amazingly normal thing to do with our guys!), took them on walks and gave us the best 6 months we've ever had with our boys.


Hope with Molly my niece

Hope worked tirelessly to get the boys to try different foods - she would send us videos of her encouraging them to first touch then lick then bite and then chew tiny pieces of banana - after two long months they did it!! When all your child wants to eat is yoghurt/puree or very specific textured foods you can imagine the emotion felt when you see your child eating a piece of banana..or anything!  We would hear Hope screeching in delight as they learned to bite and then chew a bit of food. They would cheer with her as one of them managed it and when she sent us the video of the boys eating that tiny bit of banana for the first time we would both make sharp exits out of the office, run to the loo and sob! Such small milestone and such huge steps!








Hope had a certain way with children and wherever she went, little one's would flock to her. She was a baby magnet! I've never seen or known anyone to interact with children with such natural love the way she did. She was totally forgiving of anything and totally and utterly devoted to helping our family in any way he could. She allowed us a precious night away so we could go to a friends birthday party - we came home expecting to see a very tired Hopie but what we got was a freshly baked chocolate cake, a clean house and very happy boys! Whoever snaps this girl up is a very very lucky guy!


Matthew and I on our night away for our friends birthday!


Boys fun times with Hopie Hope :)


Bowling night with Hope! (She won!)

It was in Hope's time with us that we got the official diagnosis for the boys. Although we were aware by now that they had a lot of issues in nearly all areas of development it was still a huge blow to have the official diagnosis. Like all mums when they receive news like this, I felt utter devastation. Not because I want my boys to be 'normal' but because I want them to be happy and to reach their full potential - they deserve that. I want them to be able to have friends, to feel fulfilled in a job, to enjoy everything they can in life. With their diagnosis it leaves a heavy load on my shoulders, a life of uncertainty and fear that my boys won't be able to have any of the things i dreamt they would have.

As the 6 months came to an end, Hope's time with us was drawing to a close and despite us all trying to get her a Visa to come back to us - it wasn't meant to be. I dropped her at the airport and cried all the way home. Half happy tears that we had had the best 6 months and that I was so grateful to have met this little bundle of sunshine and half terrified of how we would cope without her! We learnt a lot from her and will always remember our American beauty :)

An amazing Christmas video that Hope made us. Total heaven - we love you xxx


No Matter What

I've been waiting to write my next post to this blog but something has been stopping me. I think I've been waiting for that magic day when the boys catch up and act like other little toddlers and that we're finally on our way but my heart sinks to say that that day may in fact never come.

The boys have been so difficult in their behaviour that I felt like I was either failing as a parent or that something just wasn't right. If we put one step out of line with their routine the boys would kick off, if we gave them the wrong beaker, the wrong spoon, if we put the wrong tv channel on, if I wore my hair up instead of down, if a new person came in the house, this would result in double tantrums and when on my own this just wasn't manageable especially when out in public. Their tantrums weren't like other little one's - they would be long and the boys looked like they were terrified instead of angry.


Socks off everywhere we go! Who needs shoes anyway!



My friends would ask me over for playdates but I would have to refuse as I knew this would just throw the boys and I wouldn't be able to physically manage getting them both back in the buggy or car. The times I tried to do normal things, the boys would whine or cry the entire time so it just became easier to spend the time by myself with them. Some friends understood and others didn't - I was judged for being too protective, too detail orientated, too relaxed, not relaxed enough, not stern enough,  too stern, not kind enough, not quick enough - you name it, I've been accused of all of the above. I'm sure I'm all those things but we now know that the way the boys were behaving was nothing to do with my parenting skills!

I called the health visitor one day when I just couldn't take anymore. I told her I thought something was wrong - they weren't hitting their milestones and their behaviour was getting just beyond difficult. She came over the following week and observed them. "I just don't think you're reading them, you're just not understanding them. They're frustrated as they were born so early and they want to do all these things but they can't so they shout a lot".

Once again, I put my trust in someone and I shouldn't have. Instead I did listen to her and again I felt the guilt of bad parenting. Some friends who spent time with the boys could see how their behaviour just wasn't right whereas others thought I was being over analytical, that the boys would grow out of their oddities and as they were my first I was just inexperienced. I should have listened to my instincts - the saying "mums know best" could not have been truer!


Gorgeous smiles from Xander


When the boys turned two I asked for an individual assessment rather than in a group as in my heart I knew something wasn't right. The words of the paediatrician will haunt me forever.

"Yes, your boys are most likely autistic".

You think there would be some kind words preceding her statement but no - just straight out slap in the face "autistic" . I kept it together until I got home and then the flood gates opened. Big time!

The first thing that came to mind when the paediatrician said those words was complete sadness. I didn't know much about autism but I knew it was a life long condition and that they wouldn't be like other kids at all. All this time I had been waiting, hoping and praying for some kind of normal experience with the boys but so far everything was so difficult and filled with tears and tantrums that the reality that this may just be life from now on was too much.

Of course we had lovely times with the boys - moments when they were both happy, laughing and their cuddles and kisses were endless for us but when we had to do anything normal outside of their routine it meant A LOT of hard work on our part to make it work. Their sensory issues were out of control and feeding time was just a disaster. I try and capture all their smiles and happy times on camera as they're so precious to me - these are the boys I know and love, these are my little guys! I want the world to see how amazing they are hence the millions of photos on FB! I'm SO proud of them, SO in awe of their strength to have survived everything they have and still fight on despite finding the world a very scary and strange place to them.

We have some amazing friends who know how tricky the boys can be but they still invite us around to their house to play with their little girl and to just enjoy our time being 'normal' and of course family have been incredible. More than incredible. Without them I would have crumbled a long time ago.




Anyone with a child with autism will know how challenging their behaviour can be so it's no surprise that we have shrunk back from seeing our friends. If we were invited to a little ones birthday party we would either refuse if we knew the house had a lot of doors (obsessed with opening and closing doors!), not enough toys, too many people etc. The times we dared go we would hold our breath as we entered hoping the boys would be able to cope. It was always a stressful time going or doing anything new with the boys. I have been in tears with the boys at several play groups, I've been asked to leave, banned from the library and scowled at by other parents for not controlling my kids. Buttons are a big issue - I'll never forget the day Xander pressed the fire alarm button in a children's centre on a day where the rain was pouring down so heavily there were flood alerts all around the country. We were all ushered outside and made to wait in the miserable rain whilst they did a head count even though I told them it was just an accident and not a real fire alarm. The faces of those parents looking at me as they got absolutely drenched from head to toe - I have to confess, on this occasion I was trying to control my laughter rather than tears! Are my boys naughty? Not for one second - they're hyper terrified, anxious, overstimulated by their senses, frustrated and living in a world where their sensory issues take over and they are of course toddlers!

On the day we were told the boys may be Autistic, Matthew came home early, swept his boys up in his arms and told them he would love them forever no matter what. The look on his face just broke my heart all over again. Of course they didn't understand but they hugged him back and just watched the tears falling from his face.

We were told that the boys would have a full assessment where they would diagnose them properly. We waited 8 long months for our appointment. How ironic considering how important early intervention is. In that time we managed to keep our heads above water and just got through each day as best we could.  it was in those months that we decided we needed some hope in our lives...and that's just what we got!