In the beginning

This may be the first of many posts or it could be the first and last. I am not a man that believes himself to be one that has something to say. I am a man who has much on his mind and is looking for a cathartic outlet in dealing with the daily stresses of having a son with developmental delays. One sometimes takes steps backwards so he may effectively move forward. So... as you may already know I am a youngish father of one little boy. He is handsome and energenitic and wonderful and frustrating all rolled into one mostly perfect child. He is perfect to me. He may not be perfect to you.

This little boy of whom I will speak affectionatley as LD was promised to me by my Heavenly Father years before he was ever born. He was promised to my wife and I when medical science declared in all confidence, "you will never concieve a child!!!" With much prayer, some bailing twine and a few pieces of chewing gum my wife and I concieved. It was very exciting. Our dreams had come true and our H.F.'s promise had been fulfilled. A few weeks into the pregnancy my wife had a significant bleed. Medical science again declared "you have miscarried your child!!!!" And again they were wrong. However, with the pregnancy we also inherited gestational hypertension. Over the next 6 months we would be in and out of the birthing center to be checked and on one occasion determine if LD was still alive, his heart beat was absent. Eventually, his heart beat was found and we all breathed a sigh of relief. The relief was short lived. Ultimatley, we would find yourself back in the hospital which would result in an admission. At 31 weeks gestation we were going to have a baby boy. Thankfully, we were in one ofthe best NICU's in the nation. LD was born, the drama changed but it didn't go away. LD spend 50 days in the hospital working on those traits that come naturally to a well born baby, you know... eating, breathing and learning to both in tandum. LD really didn't master the eating issue without having a vagul response which caused a bradicardia-- now if you are not as fortunate as I am to have had a crash course in Neo-natal medical terminology I will define. LD's heart rate would decelerate to 48-to 55 beats per minute. That may not seem too bad but cardiac arrest in an infant is around 40 beats per minute. Eventually, the day would come and we would take our "pocket man" home. I could not have been more excited and more sick to my stomach. We went home for the hospital with most every piece of equiptment we used in the hospital save one, the nurses. Apperantly, my insurance determined that my training as a mental health professional and spending every day around the nurses had adequately prepared me to provide neonatal medicine in a home setting. Thanksgiving Day 2006 we loaded up a massive 5lb 4oz baby along with an apnea monitor, bradicardia monitor, oxygen condenser and eventually a pulse oxometer and made our way home. I failed to mention that during this time LD was unable to eat normally and had to have all of his liquids thickened. Our happy and ignorant family embarked on a journey of constant feedings and hypervigilance in monitoring my son's heart rate and resperations to ensure that the simple act of taking nourishment did not bring about his untimley demise. That and the continues stress of trying to return to work to avoid total financial destruction lead to the prescription of a few psychotropic medications to alleviate some of the anxiety associated with my recent change in life. Klonipin was my "happy pill".

Through much prayer and the divine intervention of my Lord Jesus, LD ceased to require thickened liquids and the issues with his heart rate came to an abbrut end. We spend the next several months loving and laughing at and with our wonderful gift from God. Both my wife and I were painfully aware that all was not well with LD's development and that he should be able to do somethings that he was not. Our pediatrician patted our heads and wrote off the symptoms to being so early. At one point he stated tha he would not refer my son for early intervention services, interestingly enough his wife was the head of the Parents as Teachers out fit in our local school district. Ultimatley, I would take the first of many steps over his head to insist that my son have everything he needs. I realized I failed to mention this in the beginning but my given profession is working with my states most severly disabled and spent a good amount of time providing case management services to children that were born with developmental delays as well as to children that had been born prematurely. I am not an overbearing nor am I a hypochandriac. I know what I am looking at and I know when something is not right. No, you are correct MD is not at the end of my name but LD's dad is and I guarantee I am certain when he needs something. Well, LD finally got into the appropriate therapies to address his issues he still had with eating solid food. He was over one year of age and could not eat anything but a number 2 baby food, the number 3's would cause violent vomitting and had resulted in aspirations. There was also concern with hpyotension when it came to his muscle tone and the fact that he had issues walking and crawling. Thankfully, though we had missed the cut off the intervention services took LD on as a patient.

That brief summary and trust me, this is very brief, had brought me to today. I am blessed to work for one of the finest states in the union and I am fortunate to know what I know about services for those with developemtental delays and disabilites. But at the same time it is a curse. I know what therapists are looking for when they ask quesiton like "does LD fixate on spinning items?" "Is LD easily distracted by the TV?" Ultimatley, a child with sensory issues and poor communicaiton skills must have AUTISM. I am not afraid of a diagnosis, because it is not a label but a door way to more supports. I am frustrated with the fact that this is his road to walk. I am frustrated because this is my road to walk. Have you ever had to ask your son to repeat what he just said because you do not understand what he has just said. He is two and half and should be running half cocked through the house and the world reeking havoc where he may. Don't get me wrong, he still reeks havoc and my goodness he can run but he shouldn't have to constantly repeat himself over and over because he isn't understood. How frustrating for him. My wife bares the majority of the brunt because she is home with him all day every day as LD has been unable to go to daycare due to a serious emotional break down due to sensory over stimulation and the teachers in-ability to understand what he was saying.

I do not deceive myself in thinking I've got it the worst. Every day when I go to work I know that I don't have it as bad as others. But it may be harder than the majority of most Americans.

Well, thank you for the listening ear. Come again, who knows what I may have to say next.