When MJ was a (newborn) baby we struggled with his feeding
in the beginning due to being re-admitted for jaundice. But we got through it
and within a few months he became a chunky food loving baby and young toddler.
I still remember his little nose being orange from eating so much sweet potato
and squash – his favorite baby foods. Or the time he was a toddler and we had
to stop him from eating too much spaghetti because I was afraid his little
tummy would explode (we are pretty sure he was filling up 2 hollow legs that
day…lol).
But somewhere between 2 and 3 years old MJ’s eating habits
drastically changed. He became resistant to trying anything new, and even began
refusing foods he had previously loved. He would often gag and make himself
throw up at the sight, smell or even the thought of eating some of the foods we
tried to encourage him to eat. He would push plates away and scream as if he
was afraid the food would hurt him. Once he was able to speak a few words to
communicate he would scream and cry (Hot! Hot! Owie!) and we would double check
the food and it was barely warm. This became a daily struggle.
We tried to work through what we thought were “phases” but
anything we tried often ended in failure and often was violently rejected. As MJ
grew there were times where his height was in the 90th percentile of
his age group while his percentile in weight was getting lower in range, at one
point only being in the 40th percentile. Sounds healthy until you
consider he was very tall in the 90th and his weight only in the 40th.
He was not proportioned and what we thought was a phase of picky eating became
a concern for his health. 
MJ’s doctor has worked with us for the last year and a half to
keep an eye on his eating situation. We get periodic lab work to check his nutrition
and vitamin levels. Surprisingly (and a great Blessing!) is that he is not in
the range to be considered “malnourished” or “underweight” though sometimes I
feel he teeters on the edge of it. The only deficiency he has at this time is
low iron. We tried to supplement with
vitamins – but because everything is taken by mouth none of our attempts have
been successful. Gummy, chewable,
dissolvable, liquid, disguised in food – you name it we have tried. He just can’t
keep it down.
As a part of MJ’s Autism he has what is called a “Self-Restrictive
eating disorder”. Due to MJ’s OCD (obsessive compulsive disorder) and his
sensory issues (all a part of his Autism) there is a high level of anxiety and
even fear in eating varieties of foods due to temperatures, textures, colors,
and even packaging. If MJ feels like his needs are not being met with his food
he has a meltdown. It is important to know that a meltdown in an autistic child
is NOT a temper tantrum. If things are not perfect or the way he wants them he
feels completely out of sync as if his entire day is ruined and he can no
longer function. Due to the amount of anxiety his world comes crashing down and
he cries out in desperation for some sort of control and feeling of normalcy in
his little world. Some of MJ’s daily behavior and struggles with food are:
1.
He always eats on one color bowl/plate (always
blue) and has to be the one that picks out his fork/spoon (with the cars on it)
2.
He drinks from the same cup every day.
3.
All food must be room temperature – not too warm,
and not too cold.
4.
His food has to be perfect – If it is a sandwich
NOTHING can be sticking out past the edge of the bread. Cheese always has to be
on top (if he has meat on the sandwich).
5.
Hot (turkey) dogs he eats “cannot have a curly
end on them”.
6.
Food must always be presented in the same way
every time. Sandwich always has to be cut in squares with crust cut off– don’t
switch to triangles!
7.
The food he eats always has to be the same brand.
Don’t try to switch brands on him or he will stop eating it because it is
different.
8.
If labels or packaging changes on a food he no
longer will eat it because it is different (even if the food inside is the
same).
9.
He has a huge issue with textures – nothing lumpy,
crumbly, chewey/jiggly.
10.
Color issues – (ie: if the scrambled egg was
cooked a bit long and has brown on it he won’t eat it). If a food is colored for fun and he knows it
is not natural he won’t eat it (Yogurt isn’t supposed to be green in his mind it
must be bad because that is not natural).
Due to MJ’s anxiety the list of foods he will eat currently
is only about 15 foods long. Scary isn’t it? Our attempts to help him at home
even with training from a specialist has had little success. At this time the
only thing that can help him is professional feeding therapy. Unfortunately
there is a severely limited number of feeding therapists available. There is
only about 3-4 feeding therapists in our area and all have long waiting lists
(he has already been on a waiting list for 2+ months). I was on the phone for
2+ hours today trying to get help and didn’t get anywhere. There simply is not
enough providers out there.
Imagine how hard it is to deal with your child’s health when
you can’t get them to eat balanced and you can’t get any help for him. Imagine
even more how much more difficult it is in social situations (when your child
already has social issues). If we are
invited to someone’s house for a meal it’s hard to explain that your 5 year old
is not simply picky, spoiled, or intending to be rude but he has a diagnosed (and
very wearisome) feeding disorder. The silent struggle that no one sees because they are not involved in your life on a daily basis.
As parents it is hard not to feel helpless when you feel you
are doing everything in your power and it is not improving the situation. On a
daily basis you just have to move forward and do the best you can while putting
the struggle out of your mind. You have to focus daily on things you can
control and celebrate small successes as much as you can – but on days like this where I have to stop and
look at the bigger picture it quite frankly scares me to death and brings me to
tears.
Lord I know he is in your hands. Praying for an opening for
feeding therapy soon before it starts affecting his health more seriously. 
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