Saturday, 23 April 2016

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 :)

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