A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Tuesday, January 25, 2011

A daddy's perspective

I'm excited to welcome a special guest today, Lou, daddy to Diego. He offers us a father's point of view in raising a little boy with autism. Take it away, Lou...

The way in which we experience emotions varies depending on the person.  Some will react in a more extreme manner than others but we all do in fact feel them to some degree.  Fear, however, is something that can elicit the most intense reaction and is of the utmost concern to me because of how strongly it affects my son.  Diego is almost five years old and was diagnosed with autism in 2008.  As many other autism parents will also tell you, our son has always struggled with extreme sensory issues.  Two of the things he fears the most are being examined by a doctor and taking medication.  This makes each and every illness more stressful and frustrating for all involved.  Bringing him to the doctor is a huge challenge for us because as soon as the physician walks into the room he loses control.  All of this is further intensified by the number of visits we have made to his pediatrician and other specialists throughout his childhood because of acid reflux, or ear and throat infections accompanied by countless fevers. 

This past year (2010) was by far the hardest because of a problem with ear infections.  After developing a very severe double ear infection that was resistant to all antibiotics we decided along with his ENT to have tubes inserted into both ears.  He then became one of the few people to have the tubes become infected because the ‘resistant organism’ that caused the infections did not fully heal.  His ears began to leak and we had to make weekly trips to the ENT to have his ears drained.  I had to physically restrain my son while he screamed, thrashed and kicked out in anger and fear while they performed a rather routine procedure.  Since our boy is not your average patient, nothing is really just a routine procedure.  Promises of “This doesn’t hurt” have no effect on either him or us because if the procedure itself is invasive, he will not be able to tolerate it.  The ENT saw how upsetting this was to our son and to us (my wife and I would barely hold back tears) and he told us we could replace the tubes in order to stop torturing him with repeated cleanings.  As difficult as it was to bring him back to the hospital and have surgery, the second set of tubes have worked out better for him.  He does get the occasional ear infection but with the help of an antibiotic, his fever subsides and he begins to feel better. 

Since my son is developmentally delayed, he really cannot afford to constantly get sick and miss both school and therapy sessions.  As soon as he starts to feel better and can concentrate on his speech and OT sessions he usually ends up right back at the doctor.  We feel as if the progress he is able to make is then negated with the next fever and subsequent trip to his pediatrician.  How can we expect his behavior to improve if he doesn’t feel well?  How often are tantrums related to physical discomfort?  Does he have a headache?  Did he eat something that didn’t agree with him?  Unfortunately, his limited use of words prevents us from knowing the answers to these questions.  What we needed to do was find something that would help him feel better.  After all, we want to give our son a chance to learn to communicate in a more effective manner and most importantly we want him to be happy.  It is difficult to see his frustration at his lack of speech and inability to explain what he wants or needs.

What we have decided is to try and attack the source of the problem by helping to prevent so many of the infections and other illnesses in the first place.  We were able to find a dietitian that focuses on helping special needs children and their families through nutrition therapy.  We feel that with a balanced diet along with vitamins and supplements we can help his body build a stronger immune system and he will fight off infections before they are able to fully develop.  The beginning of this process was a great way to end a difficult year because we can sense we are on the verge of a breakthrough.  My fear that he may end up losing his hearing before ever being able to speak has lessened and he has even begun picking up some new words.  I know when given the chance our son will flourish and it is our hope that with longer periods of good health, his behavior, speech and communicative abilities will take off!

**Lou shares a journey with autism from a father's point of view. He has two sons and his oldest was diagnosed with an autism spectrum disorder in 2008..You can find more from Lou at his blog Our Life With Diego or follow him on twitter: @loubega1


Brian said...

As a Father, and a male in a female dominated profession (speech therapist in a regional program for autism), let me just say that I am glad you are letting your voice be heard. I think the issues you are having with Diego, though common, can be so frustrating. Stay strong and be patient. I am glad the new tubes are working and hope that the diet will help. The food that goes in has to have some affect on our body. I can't wait to read more about Diego!

Lou said...

Thanks Brian! We are hopeful that we will be able to boost his immune system and when he is healthy for longer periods of time, we feel he will be able to make some positive strides. He is a picky eater so we will need to add supplements to his diet to meet daily minimums of vitamins and minerals.

Lynn said...

I can't believe what you went through with ear tubes...how awful for poor Diego. I'm glad that you are pursuing nutrition therapy. Audrey is one that gets sick alot too (seems to be one extreme or another with our kids) but we've worked very hard and getting her to eats her veggies and it helps alot. Good luck!

Ren- Lady Of The Arts said...

Great post-
I wish all the best for Diego- Nutrition therapy is something that I don't know anything about yet intuitively sounds like a positive direction.

JennieB said...

I really relate to the cycle of sickness and missing school, so you never really know what is working or not. We also go through cycles of very little sleep, which also affects behavior, mood, etc.

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