Saturday, 12 December 2015

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?!


Monday, 2 November 2015

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!

Wednesday, 28 October 2015

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 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!