Saturday, March 13, 2010

A chapter closed

From the time Ethan was a little over one year old, I knew that something was different about him.

Call it mother's intuition, or a gut feeling, or whatever--but I just knew that something was wrong somewhere.

Ethan wasn't progressing in some areas the same way that his brothers had. I knew enough from Colin and Cameron--who are polar opposites, in many areas--to know that children, even when they have the same DNA, can be very different.

But this wasn't necessarily a difference. It was something that I was seeing as more of a developmental issue, and I was concerned.

At 14 months, when most toddlers are eating straight from the table, E Ry was still only eating jarred baby food. As much as I tried to introduce new foods (things young kids love--cheerios, fruit puffs, etc.) to him, he would just turn up his nose at them and push them off of his tray. When I tried to spoon or hand feed him, he would get the food in his mouth and would either 1. spit it out (if I was lucky) or 2. gag on it and throw up on the table.

As much as this was a very frustrating and concerning situation to me, it was not where the bulk of my concern lay.

Ethan wasn't talking. At all.

Not at a year. Not at 18 months. And not even at almost two.

No 'Momma', no 'Daddy', no 'ball' or 'peeeeese' or 'dog' or 'bye-bye'.

I would discuss it with other people sometimes. Most of the time, they would say things like, "Oh, don't be concerned about it! He has two older brothers who do all the talking for him! He doesn't even need to talk. He'll talk when he's ready!"

Except that he wasn't. And I was concerned.

I am (unfortunately) one of those people that, immediately upon a problem, goes to the 'absolute worst case scenario' in my mind.

Shane's not home from work when he normally is and isn't answering his cell? He must have gotten into a terrible accident. Job market is becoming unsteady? We're gonna be on food stamps and in foreclosure soon.

See what I mean?

In my head, I literally had Ethan deaf, in a special school, and all of us having to learn sign language in order to be in communication with him.

I don't know why I do things like that. Geesh.

I digress.

Anyway....back to the place where I knew something was wrong but didn't yet know what....

Ethan wasn't sick. He hadn't had chronic ear infections or anything else that would lead me to believe that his ears were damaged--and I knew he could hear. I knew because I constantly "tested" his hearing on my own.

I would stand at the other end of a room and say very quietly, "Ethan." And he would turn his head to me. He could also follow instructions very, very well. I could say, "Ethan, go down to your room and put your blanket away, and then come back down here to Mommy." Three commands in one sentence--and yet, at not even two, he could do exactly what I was saying.

I knew that he could hear me. But he just was not saying anything in return.

I finally decided, just after he turned two, to voice my concerns to my pediatrician. She checked his ears, said she didn't see anything abnormal; but upon my insistence, she referred me to an ENT.

I was so glad to finally be going to a specialist. I knew we would get answers.

Except that we didn't.

The ENT (whom I did not care for, very frankly) basically laughed me out of the room. He looked in Ethan's ears and said that, though he did see a bit of damage (most likely from an ear infection that had gone undetected) he saw nothing to be overly concerned about. Then he stated that there was no reason that I should have been referred to see an ENT--just because a child wasn't verbal at two years old did not mean that something was wrong with that child.

But there was something wrong with my son, and I knew it.

I kept on.

(**Just a side note here: I did glean some important information that day at the office. Ear infections, in some children, present with absolutely no symptoms. No fever, no tugging of the ears, no crying, nothing--and that is what had most likely taken place with Ethan. I always have watched my toddlers for ear issues very carefully, after a nasty three-month ongoing infection when Colin was about a year old. I know what to look for--but you can't look for symptoms that do not present themselves!**)

I contacted a local agency to see if I could get Ethan a hearing test. Which, I did, and we went to.

He failed it terribly.

But here is the thing: Ethan's "hearing" was just fine. We just didn't know that at the time.

Over the course of the next nine months, Ethan took four hearing tests, all with the same results....a big, fat "F". He could hear some of the things that the audiologist was testing for, but it was discovered that he had little to no movement in his ear drums, due to fluid buildup.

Some kids just have a lot of fluid in their ears that comes and goes, and with our history of allergies and asthma in this family, we have kids like that. But Ethan's Eustachian tubes don't drain well--and the fluid that comes doesn't really go like other children's do.

When you have fluid in your ears, it muffles sound--making it very difficult to distinguish between consonants. Also, children certainly and primarily learn to speak by hearing; but secondarily, they learn by imitating what they are seeing their parents/others do with their mouths.

Say the following letters to yourself, paying attention to your lip movement: C, D, E, T, Z. Now G and J. Much of the exact same lip movement is in each of those sets, as it is with many other letters. When a child can't differentiate the movements and can not hear the sounds, it makes it very difficult to form the words!

After the first failed hearing test, I began exploring my options. We knew E was hearing some things, and thought that maybe some form of speech therapy would help him. He was seen by several people and then screened to see if his speech development (or, rather, lack thereof) was bad enough to qualify for therapy.

It was. At 27 months, he had the speech of a 15-month-old.

He went through nine months of speech therapy. We loved our therapist--she came to the house every Wednesday at 8:30 and worked with Ethan for an hour. However, what we really gained from those sessions was the knowledge that we needed to be able to work with him here at home.

There was much more to speech therapy than I ever could have imagined. That eating issue that I mentioned before? Turns out many children that have hearing/speech issues also have eating issues. After we finally got Ethan eating more than just soft foods like yogurt, applesauce, or refried beans, he began the oddest behavior: stuffing his mouth so full of food that he could barely chew. As any parent would be, I was concerned that he would choke--and so I would cut things up very small for him. It didn't matter. He would just stuff in more pieces if they were smaller!

It turned out that many children who don't speak or hear well have what is called "low mouth tone". The nerves in their mouth are not as strong as a 'normal' child, and so they stuff their mouth so full to be able to actually feel the food and chew it. Weird, huh? (Incidentally, he always managed to chew it all and swallow it--he never choked.)

During those nine months of therapy, E was still doing those hearing tests that I mentioned before--and failing them. However, he was showing tremendous progress each week at his sessions, so we pressed on--not knowing how much or how little E was really hearing.

Fast forward to January, 2010. Ethan graduated from speech therapy, scoring at a 36 month level. He was 36 months old. *tear* It was a wonderful, wonderful day for us.

We followed up at another--different--ENT two weeks ago. Ethan had another hearing test, and passed this time with flying colors.

Most likely, what we believe was happening was that all the other times he went for tests, he was failing because of that pesky fluid--not because of some other, more serious, damage to his ears. We were so excited! Though we originally thought it was a certainty, there was indeed no need for the dreaded tubes after all. He was just, as the ENT put it, "one of those kids with fluid issues. No need for any further treatment." At least, for now.

I think it is important to note here that if you think there is an issue of any kind with your child, no matter how big or small it may seem, do not give up until you get the answers you are looking for--and are completely satisfied with those answers. It took us over a year to get closure on this particular situation, but I am so glad we pressed on. As a parent, YOU are your child's advocate--and sometimes their only voice. If you don't fight for their benefit, who will?

There were and still are many side effects to all that we went through with this, and we deal with them everyday--but the important thing is that E is now a very happy and very, very talkative little boy. I find at times wanting to say "Ethan, you need to be quiet!"--but those words rarely escape my mouth. There were too many months that I was just praying for him to say one word, anything. I think about that....and it sure is hard to discourage him from talking now.

Especially when he is saying things like this:

Psalm 37:4: "Delight yourself in the Lord, and He will give you the desires of your heart."

Ethan's first real verse....hopefully, the first of many.

Did I mention how good it is to hear him talking?


Robin Bair said...

Wow.....what a journey. I had no idea. How thankful you must be when you hear him talk. So sweet. :)

Julie said...

*SNIFF, SNIFF* I remember when you first told me you feared something was wrong...SO very glad for answered prayers! YAY!!

Anonymous said...

WOW.... what a testimony about following your heart.

and yea for Ethan!!!!Good work buddy.

Sharon said...

I love the verse. He sounds so sweet saying it. I'm glad he is doing so much better. I remember giving hearing tests to Eli myself, because I was sure he was deaf. Made for some very unsettling days. I'm glad you were able to figure out his problem and get him back on track!

Amanda Hoyt said...

Oh Devin, I'm so sorry you, Ethan and your family have had to struggle with this for so long! I'm SO happy that you finally got the help he deserved and that video of E saying his verse is just precious!
Love you, friend!

Anonymous said...

Yay for a mother's tenacity in following her God given maternal instincts. xo

SarahMerritt said...

He has the sweetest voice! I am glad you knew something was not right and you kept on it! *You on a side note have a sweet voice your self!!!!*

Carolyn said...

What a precious video...especially after reading about your fears and your journey with him. So thankful for him and for you that he is doing so well now. Praise God! Thanks too for the encouragement to never give up until you find answers - my sis-in-law is struggling with sensing something is wrong with her little guys health (1yr old) and is frustrated with her pediatrician. Made me want to ask you if Ethan still struggles with eating/textures, etc.. - my nephew seems to have eating stuff more than hearing, but..... Anyway - thankful for you!!

momma23 said...

Good for you for fighting for your son! Ever since my oldest was a baby, I have strongly believed in intuition. He had a number of ear infections, and I took him to the ENT without the doctor telling me to. Sure enough, he needed tubes. When my second son was born, his GI doctor kept insisting he 'just' had reflux, but I knew it was more. I took him to a different doctor, who confirmed a milk allergy. And now, with our youngest, I've had her in several times for things that were just out of the norm - and we discovered that she, like her brothers, needs ear tubes, and is tongue-tied. Love reading about your adventures!

Erica Miller said...

That was so precious! His voice is so sweet! I am so happy you continued to pursue the issue, even when doctors were saying there was no problems.

Kathy said...

Ohhhh D. So much to say. I go from A to Z with the worst case scenarios too. That is scary but I'm so glad he's doing well {and so stinking cute! gah...seriously.}
I thought Nora couldn't hear either and we've been dealing with fluid issues. I was scared for awhile. She didn't move at any sound {granted she does live with 3 brothers:)}
Thank you for sharing friend. Much love and prayers.