Thursday, March 4, 2010

The Unexpected Answer

There is nothing worse to me than having a question without an answer. I am a person of faith but I also benefit off reason. So, I usually find myself in complete and utter turmoil when neither of the two provide me with a believable answer.
I spent months convincing everyone that there was an issue with my son's feeding skills. The majority (i.e. my family, the doctors, the babysitter) kept telling me that he would figure it out and did not share the same level of concern that I had.
I was not a first time mother, I did have some medical experience, and I am not inclined to assume the worst, but, none of that seemed to gain any support to my beliefs.
Then, it happened! I took him in for his one year check up and we saw another doctor in the same practice. He looked at his growth chart and realized there had been a significant drop in his weight. Finally, not just a new set of ears to preach to, but, a set of eyes that were actually really paying attention to what I was saying, for a change.
He admitted he did not have an answer for me, but, decided to delve into my concerns and suggested we send him to a therapist for an evaluation. THANK YOU, THANK YOU, THANK YOU!!! It was the first time in 6 months I had felt acknowledged and hopeful with this situation. Could this finally be the answer to my question concerning his difficulty eating?
I scooped up his referral, thanked him sincerely, and didn't waste any time in setting up an appointment. In fact, when I was told they didn't have an opening for months, I called the doctor back and asked him to pull some weight and see what he could do to speed the process. It worked! I had an appointment, and, that in itself, meant so much to me.
Then, the day finally came. I had been granted 30 minutes to have a "professional" feed my child and see if I was onto something or not. I knew it was going to be the beginning or the end and I begged God to provide me with some kind of answer that moment.
The therapist listened to my concerns, performed her own feeding evaluation and provided me with a final conclusion. "Your son, undoubtedly, has a sensory issue." "Well, there you have it," I thought, but, "what exactly does that mean?"
She went on to explain, "that we all involuntarily react to our senses; taste, touch, smell....your son's brain is not telling him what to do with the food, so, the reaction to swallow is not happening with him. We will, literally, have to teach him how to eat." It was not the answer I was expecting, but, it was an answer!
He was sent to a children's hospital for a swallow study to rule out any physical issues, but, it came back with the same result. His issue was all sensory related. I was given a bunch of information, set up for feeding therapy, and sent out the door even more confused than I was when I first entered. It was not a "pop this pill and you will feel better in the morning" kind of situation. We were beginning a journey with no time line and no real way of understanding when we would see results.
However, I was praised by the therapist for my persistence. She told me that it is often over looked by the doctors and that many parents delay taking care of it because they, ignorantly, think it is admitting there is something wrong with their child, and, in time, they will grow out of it (which they NEVER do).
She gave me direction and hope that early intervention and therapy was the best method for his issue and I was willing to put EVERY ounce of trust I had in her to help him get through this. I have learned SO MUCH about sensory issues, myself, and my son through this experience:

There is a strong bond between your child and your self. There is such a thing as Mother's intuition and ALWAYS recognize and listen to the signals your child is sending you.

Be persistent and be prepared to try and try again, if necessary!!! Don't let your feelings be dismissed or go unnoticed. You owe it to yourself and your child!

Sensory issues are what they are. There is no rhyme or reason as to why some senses do not develop. So, get over the "how" or "why" and quickly dig into the "what can I do" and "where do we go from here" modes.

Unfortunately, there is not enough awareness or understanding about sensory issues until you experience it first hand. I have had to explain even more times than I can count that my son is not "autistic" or "delayed" or "not normal." Even when we were provided with a diagnosis, it was not a well accepted or understood reaction from others. Do not take it personally and see it as an opportunity to inform them of sensory issues.

Utilize EVERY resource possible in your community. There is an organization, provided through our local hospital and funded by our state, which has paid for all of his therapy for the first two years. Then, the school board has picked up where they left off.

My son is three years old now and has fully gained control of his sensory issue. He is able to enjoy all foods and there is no indication, whatsoever, of his earlier difficulties.

This website provides a wonderful explanation of sensory issues:

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  1. That was very interesting. It is hard to imagine having to be trained to eat. The mind can really cause so many problems. I am glad that your son has completely gotten over it.

  2. So, basically he just needed some OT and he's good to go?

    I'm happy that your son's issues are behind you...and you now have an empathy that many don't for what sensory issues can be like for children and how hard it can be to get it diagnosed.
    I'm glad you were such a strong advocate for him!

  3. No OT, Kathryn. He went to feeding therapy for 2 yrs and he had been in Speech therapy for a year. The swallowing is under control and now they are working on strengthening and controlling the use of his tongue. For the most part, we were very lucky to get him in therapy as early as we did and he was definitely not on the extreme end of feeding issues.No feeding tubes or anything like that. Thanks for reading the entry and I enjoyed your entry about the 6 word challenge!