THE 17 POSTS: MOUTH ISSUES AND HURLED PLATES- PART 1

Here is 2/12

A series of posts on the 17th of each month about my daughter's rare syndrome, Smith Magenis Syndrome, caused by a deletion of genetic material on chromosome 17.

No Tilly don't! Tilly put your feet down and stop spitting.... don't you dare throw that!

 For way too long this was our mantra at mealtimes. Chairs kicked, feet defiantly stamped onto table tops, food spat and plates hurled. Mealtime...a battleground laced with terror and challenge, with food rendered inedible by knots of tension in the back of a Mummy's throat and un-digestible for my baby as life stacked the cards too cruelly for her to function.

Mealtimes all too often a time when tears were gulped back and Oscars earned for the role of 'this is fine kiddies let's all chat about our day and eat'. It's stressful putting on a cheerful front for your other kids whilst being spat at and dodging hurled items. It's stressful getting on with dinner when your heart is breaking for your beautiful child who isn't coping. It's stressful having a time daily when you are firmly reminded that life is super challenging  for the entire family.

The mouth and Smith Magenis Syndrome, it's a complex area, rich with issues and challenges. Prisms website says this about the syndrome and the mouth area...

Oral-sensory motor dysfunction (poor suck/swallow, decreased tongue strength & movement, open mouth posture, frequent drooling, textural aversions)

Speech delay and articulation problems

Mouthing objects or hands that persists beyond early childhood

Teeth grinding

Feeding problems (poor suck/swallow, transitioning from puréed to textured foods)

Yes it's quite a list!

For Tilly we see all of the above and it affects her life in many ways. Her feeding has always been a challenge, right from the seven day stay in hospital after she was born to the daily mealtime drama of the present.

She loves and hates food all at the same time. Eating is scary for her... she chokes, she gags, she is fearful! With underdeveloped chewing skills, she has an inability to move the food around her mouth, she tends to try to squash food against the roof of her mouth and still needs reminding at nearly 7 years of age to swallow until her mouth is empty.

Her choking is exacerbated by a highly sensitive gag-reflex and this coupled with heightened sensory awareness around the mouth and complex textural aversions, eating very quickly becomes laced with terror and plates can get thrown regularly!

Fruit in particular can reduce Tilly to a gagging mess and so far only bananas are tolerated. To get fruit into Tilly we buy the pouches of fruit purée for babies, which she loves. If only fruit was adored as much as her beloved biscuits or cheese.

She hates mixed textures, can spot a vegetable a mile away but loves anything laced with sugar, the sweet tooth of our kids with SMS is legendary!

1- Toast and assorted vegetables = terror

2- Biscuits any time please.

3- Custard smooth and sweet enough to be always welcome, even two bowls at a time

And then of course when mealtime is happy you have the problem of food inducing sleep in our children...yeah life's a bitch and then you sleep through the good bits!

Drinking out of open cups is also a skill a long time in coming. The poor swallowing skills and tongue-strength resulting in many messy accidents. In fact synchronised beaker-routines, crisp eating and bowl balancing were all perfected in our house way before a more normal drink and swallow skill.

But there have been times, some magical times when food has been celebrated and enjoyed and shared and those times are never ever ever taken for granted. Times when Tilly delights in food, normally when she gets complete freedom with no nutritional demands placed upon her...like being let loose at the desert cart in the all you can eat buffet

Yes these times are magical off the scale...like glittery-rainbows and unicorns magical!

And then the times when Tilly surprises us all and is brave with no prompting, like today when she picked up a slice of raw carrot and ate it! She tapped me on the shoulder and opened her mouth to show me what she was chewing, she was gagging but proud and I screamed with delight and awe!

Tilly's eating continues to improve weekly, she now eats dinners and gravy and some meat. She has the occasional pea or carrot or cauliflower. She will eat a cooked breakfast,  bacon and sausage. No longer is it just banana, cheese sandwiches and all things sugary. Hey and guess what sometimes nothing gets thrown!

We are so proud of our girl and I know she is proud also. This has been the scariest challenge for her to battle but she is doing it, she is such a star! We can now see mealtimes in the future and they whisper promises of calm and peace. I am looking forward with hope because my child with SMS is so amazing!

Coming next a post about all the things we did to try to improve Tilly's eating and her oral control.

Tilly I love you to the moon and back always. xxxxx