Why can't you eat!?

Trying to introduce food into Adrian's life was entirely nearly impossible.  Everything that was given to him had to be watery, no lumps of any kind.  He was a champ on conquering his Stage 1 baby foods, but as time progressed and we began to buy the Stage 2, we noticed something very concerning.

Even attempting to swallow that slighest lump of food, Adrian would gag and throw up.  It was horrible.  Everyday we would try to make it less lumpy, but no matter the size of the lump, as long as it was not watery, he would gag, choke and hurl. 

This went on for a few months.  We kept going to our peditrician and he felt that it was nothing to concern ourselves, "some kids just aren't ready."  Well... as a mother I knew that it wasn't just because "he wasn't ready." 

Then the news came out that Adrian was autistic.

 

 Well F bomb...  What does that mean!?  Does that relate to my son's impossibility of getting anything down besides slush?

 

Answer: Yes.  Autistic children do have feeding issues, usually due to texture.

 

My Answer: It still doesn't add up for Adrian.  To me, his parent, this isn't because he is disliking the texture of the food... There is something else going on here.

 

As we got started in programs to help Adrian, we also seeked out therapy to help with the feeding issues.  Hoping that there was someone out there that could help us figure out the problem.

 

There are many wonderful people out there that actually listen to what a client says and not just reading a diagnosis off a piece of paper...

 

For us, this was not the case with 4 different therapists who were unwilling to help us because they claimed his issues were due to him being "autistic" and there is nothing that can be done about him being picky.  ...Thanks a lot for all your help and you kmagkrgkqglker listening to us...

 

You know when people say things get worse before the get better?  Uh, yeah... things got A LOT worst.  With the lack of help from therapy to get this kid to beable to eat, I quit my job and took it upon myself to help him.  I had NO idea what I was doing or how I was going to do it, but I did.

 

What I did and what we continued to do:

 

Day in and day out, I attempted to play with texture.  I would grab Adrian's baby foods and mix other stuff into it.  One day I would grab his Stage 1 baby foods applesause and buy a regular applesauce from the store.  This might sound a little silly, but there is a consistency difference.  I would play with how much I would mix in with his baby foods and if I got to a point he could handle it, I would write it down and leave it at that.  Now even with mixing the applesauce, which isn't very lumpy, as long as you buy it that way, it was an issue.  However, I kept moving forward and still continued to work with what he could handle.  I would crumple up a little cracker until they were soft to make some lumps and I would buy Stage 2 and mix a little bit into his Stage 1 baby foods.  I even started making my own baby foods and played with texture.  We played with different creamier foods, like pudding and yogurt, even yogurt that had the fruit inside and seeing how much of the fruit he could handle.

 

After each attept and each concoction I would write down my progress and recipes so that I knew where he was at and how he reacted. 

 

There was moments where he fought me because he would observe his spoon before eating.  With the feeding issues came the not feeding yourself issues, so I would have to feed him to get him to eat.  So at times it was a lot more difficult than others.  And at times I would have to place food on my finger and force him to try it. 

 

It was like this everyday for a year.  And with all these problems came the issue of money... So his father and I had a diet of beans, rice and on our lucky days, spaghetti.

 

We made some awesome progress, but then it came to the point that he would refuse to eat baby foods!  But he still couldn't swallow anything that was (now) creamier than pudding.  So what did we have to do?  His diet consisted of chocolate pudding, vitamins (liquid perscribed by his peditrician), and Pediasure (a supplement for children that helps them to have balanced nutrition).  That was it.  That is ALL that at this point he would tolerate. 

 

Still I would try solider foods, but still nothing and he would refuse to try anything.  When I got a moment to get anything else in his mouth besides pudding and Pediasure, he would hoard the food in the cheeks of his mouth like a chipmunk. 

 

 

Some clarity!

 

As we had struggled to find a therapist who actually might know what they are doing, we ended up having success.  This woman was awesome and I am sad to say that we no longer see her because of our "oh so lovely" insurance, but that is a story for another day.  Anyways, she was an awesome help in our quest to get this kid to eat!  It was getting to the point that our peditrician was worrying that he might be put on a feeding tube.  But with the supplement of Pediasure and vitamins we were successfully avoiding that option, but we weren't sure for how long.

So, back to this therapist.  She listened!  For the first time in a year we found someone that listened to us!  It was a breath of fresh air.  I gave her my stack of data that I compiled, as well as, the information we got from IEP meetings and such, and allowed her to copy and read up on anything and everything she needed to.  We set up a therapy appointment with her and when we got there (it was about an hour drive to get there from where we live) Adrian and her went into a little room as myself and Adrian's dad watched through a window. 

 

She was sticking out her tongue and trying to get Adrian to mimick and as he attempted it wasn't right.  She made sounds and mouth movements and as Adrian tried himself, it wasn't right.  In the middle of the therapy session she pulled out a stick (like the ones that look like popsicle sticks they use to push down your tongue at the doctors) and attempted to examine his mouth. 

 

Hmmm.... This is new... In the last couple of years I haven't seen such thorough examintation of my kids mouth.  Then a look came upon her face.  Had she figured out something about my son?  Was there finally an answer?  Did she notice something that even our peditrician missed???

 

The hour passed... and as Adrian and the therapist walked out of the room she asked myself and Adrian's dad to come into her office.  She looked at us and asked: "Did you know Adrian is tongue tied?"

 

Tongue tied?  What the is that?  Isnt that what happens when you can't talk right?

 

Actually... tongue-tied is known as Ankyloglossia, which is when that thin strip underneath your tongue (frenulum) doesn't thin out after birth and as you grow.  Which for my son, that thin piece of cord never did that... and when you lifted up his tongue, that piece was all the way at the tip of his tongue.  Which meant extremely limited mobility.  I was both relieved for an answer and also incrediably mad at the same time. 

 

So this is the issue?  This is what we were dealing with?  What can be done???  Why was this never noticed before?

 

As the therapist explained to us because of his age they can't cut it because the likely hood of it to grow back is greater and it can cause other complications... If when our son was born and they noticed this issue and took care of it right away, he wouldn't be going through this stuff.  So... now for more therapy!  We took Adrian to see her once or twice a week (depending on how much money we had for gas).  And what we had to do at home?  Stretch out his tongue...  For the first couple of months we had to actually grab his tongue and pull on it, not hard, not rough, but a little bit to get it to move... We also had to have him try mimicking us and making weird faces for him to know to move his tongue. 

 

We looked incrediably silly doing it. 

 

Needless to say, we did it... but still no success with the eating.  Then we were scheduled for a Barium Swallow Study.  But what happened before that was short from amazing.  My boyfriend and I took Adrian and his cousin, Samuel, to McDonalds.  Not that Adrian ate the food, but we took him out to get use to public.  Then out of nowhere Adrian walks up to the table and looks at Samuel's fries.  I smile and say, "look Adrian, yum.." and nibbled a bite.  In my heart I felt like it was a wasted effort, but even with my feelings I still took any oppurtunity to have him find interest in solid foods.  He then took a fry off the table and took a bite... and ate it!  Did that just happen???  YES IT DID!  It was so undescribable how his father and I felt.  We were in shock. 

 

We still continue with tongue excersises because of the speech, but that is also another story, but I am happy to say that after a long fight with eating, it happened. 

 

We still did the Barium Swallow Study and what we found was that yes, do to the lack of mobility of the tongue, Adrian was unable to push back the food with his tongue to help him swallow.  This caused the gagging, the choking and the throwing up.

At least we finally had a conclusion for what was going on and not because he is Autistic.  As a parent you know your child and if you notice something and you know in your heart that everyone else you are dealing with is wrong, don't stop the fight!  I don't know where we would be if we listened to the 4 therapists and our peditirician that claimed that the issue was solely based on the fact that our son has Autism.