I would like to share my story with a child with special needs, as well as mental illness with the world. My son is my world, my everything and I would go to the end of the world and back to protect him. I always tell my son "I love you to the moon and back". He just smiles and does the sign language sign for I Love You. I would be at a complete and utter loss without my little boy. I hope this blog gives some kind of insight to the trials and tribulations of raising a child with special needs as well as a mental disability. 

I will start my story from the beginning. I was 25.5 years old when I found I was pregnant with my son. I was a little shocked because he was not planned. After my two daughters were born I decided I did not want any other children. Things happen for a reason! At my first OB-GYN appointment everything was okay. It was not until the first ultrasound that things had changed. The radiology tech was very quiet as she was taking measurements and what not. I asked her what she had seen, and of course she told me " I cannot read the results to you, the doctor will have to do that". At that point I knew something was not right. I left the hospital that day with no answers. It was a waiting game that had me on pins and needles. The weekend has came and went, and that Monday morning the phone call came. My OB-GYN told me that I needed to be referred to a high risk pregnancy doctor. I asked why I needed to be seen by a high risk doctor. My doctor told me that something was wrong with my son, and he needed to be followed closely for the remainder of the pregnancy. My heart sank into the bottom of my chest! A million questions going through my mind at one time. What was wrong with  my baby? Is he going to survive? Why did this happen? Did I do something to cause this? After all the questions I came to the conclusion that it was not anything that I did, it had everything to do with the Lord. He was the one that decided that my son was going to be "different", and he was going to be faced with some challenges down the road. I remember my father telling me that the harder challenges were only given to the people that could handle them. As the months progressed, I learned that my son was going to be born with some kind of genetic complications, and it would take more testing to pinpoint exactly what was wrong with my boy. The first thing the doctors were saying was Noonan Syndrome. Noonan Syndrome is a genetic disorder that prevents normal development in various parts of the body. A person can affected by Noonan Syndrome in various ways; unusual facial characteristics, short stature, heart defects, other physical problems and possibly lower intelligence. Noonan Syndrome is a genetic mutation that happens when the fetus acquires a affected gene from the dominate parent.

After learning that my son could possibly have a fatal genetic disease, my heart was in my throat and I could not stop crying. I had hope that the doctors would be wrong and my son would be born and nothing would be wrong with him. I prayed, and prayed and prayed for a miracle. I remember the day I went to the doctor and a genetic counselor was there. That woman was telling me that raising a child with special needs will be very complicated and having other children and having to spend a lot of time with a special needs child will be "very hard for a parent to deal with". I told her that I was aware of the challenges and I was strong enough to deal with the issues when they arose. That same counselor asked me " Ma'am do you want to terminate the pregnancy"? I said EXCUSE ME? No, I do not want to terminate the pregnancy and you can leave the room right now! I honestly do not know why someone who does not even know who I am would ask me to kill my child before he even had a chance to be born. I will never forget that woman for as long as I live. Who was she is judge my capabilities to raise a child who was going to need a little more love, and attention? She was a nobody! 

Birth to 1 year

My son was born at 33.3 weeks. He weighed 5 lbs  2 oz and he was only 15 inches long. He came out screaming, but suddenly the screaming stopped and the room went dead silent. I knew right then and there something was wrong. I hear "He's coding, He's coding, get the crash cart". I was yelling what is going on, before the question could even be answered my son was gone, out of the room into the NICU. It was about 5 hours before I could even see my son. When I finally got to see him, he was perfect. I didn't see anything wrong with him. He was intubated because he could not breathe on his own. My son was tiny, he had blonde hair and the biggest brown eyes I have ever seen. I did not see anything wrong with him. Doctors were never straight forward with me. They always told me everything would be okay. Well, as a parent I knew that was not the case, and they were just sugar coating it. My son was life flighted from the hospital he was born at to another hospital with a better NICU. My son spent a little over 70 days in the hospital after he was born. The genetic doctor was at the hospital right before my little boy was discharged. The genetic doctor was pointing out all the abnormalities when it came to my son. " His eyes are too far apart, his chin is to small, his ears are sitting to low, the bridge of his nose is flat, his nipples are to far apart, and his third toe on his right foot is too small". I was a little dumbfounded. I could not figure out where he came up with all those things because when I looked at my son I saw perfection with a nasal canula in his nose! My son was discharged home that same day with a apnea monitor and oxygen. The first couple of days home were a little rough getting used to the monitor going off all the time because his leads were not sticking to his skin that well. As time went by my son seemed to be doing just fine. Random apnea spells but they were all self resolved until one day....My son was about six months old and I got a phone call in the morning which was a friend asking me to babysit her son because she had to work. I told her sure bring him over. Well instinct told me to check on my son because he was not awake yet....What I found plays over in my mind over and over again. My son was blue, my son was cold, my son was stiff and my son was not breathing. I immediately called 911, and did exactly what the operator told me to do. I began CPR on my son with the hopes that he would be revived before the paramedics arrived. Unfortunately that was not the case. My son was intubated by the paramedics and rushed to the hospital. By the time I arrived at the hospital my son was in the ICU on a ventilator and the doctors were trying to figure out what was wrong with him. The pediatric doctor on call told me my son had vomited in his sleep and aspirated it causing pneumonia and him to stop breathing. My son was started on some anti-biotics to get rid of the infection with the hopes on making a full recovery. He did make a full recovery within two weeks on being in the hospital. Again my son was discharged home with a new monitor because that last one was not working correctly or I would have known he was having issues breathing and would have been able to prevent CPR. 

As my son got older, I began to notice that he was not crawling, talking, and eating quite like the other children I knew that were his age. I tried not to let it bother me because I've always been told that "each child is different". As my son reached the eight month marker I began to worry because he still was not crawling or talking or eating solid foods. I made an appointment with his pediatrician and that's when we were referred back to the genetic doctor. My son and I went to that appointment and that started a battery of tests. Each one of them coming back negative. The genetic doctor had no idea why every test he performed on my son had a negative result. I told the doctor that my son was not going to be some lab rat until they figured out what was wrong with him. I made a follow appointment for the upcoming year to see if some new symptoms had arose.

1 year-3 years old

My son was now a year old and still developmentally behind. My son had a developmental therapist that came to my home twice a week to work on his fine motor skills and his cognitive skills. Each week my son began to get better at the things that most children we already doing. I would praise him for his hard work all the time. He was my "little fighter". At about 15 months my son started crawling and that was by far the best day of my life so to speak. By almost 18 months he was eating solid food and not aspirating any of the food. My son spent most of the winter months in the hospital for respiratory distress caused by complications with Trachea Malaysia as well as Bronchial Malaysia. My son also got pneumonia and RSV every single winter. We all knew that his immune system was not as strong as most people. But again my son was not like most children! We continued the therapy twice a week until my son was 2.5 years old. When he reached that age he was walking, he was talking, and he was eating correctly. We still had some complications with eye to hand coordination but that to me was not that big of a deal. At about age three I noticed some behavioral issues that I have not seen before. I know all children will purposely do something to tick you off to watch for the reaction. I am well aware of that because I have other children. My son was mouthing off, screaming at me, throwing things, kicking things, biting himself as well as his siblings and that to me is not typical behavior. I made an appointment with my son's doctor and she came to the conclusion that my son had ODD which is Oppositional Defiant Disorder. Which if not taken care of can cause another disorder called Conduct Disorder. My son was evaluated by a pediatric psychologist and that woman told me that my son in fact did have ODD, as well as a severe case of ADHD. Definitely not what I wanted to hear. I asked this doctor what I could do to help my son when he began to show aggressive behaviors. She told me " we will medicate him to prevent these out-bursts". I agreed to put my son on some medication that would prevent these mental break-downs. I also took my son to play therapy once a week with a shrink. My son enjoyed it until he was familiar with the doctor then he started to show the aggressive behaviors at therapy. At that time the shrink told me that I needed to have my son tested for Autism because he is lacking social skills. I said wow, if it's not one thing it's another. I followed the psychiatrists' orders and took my son to be tested for Autism. Low and behold, my son was diagnosed with a higher functioning part of Autism. That added even more questions for me to ask. What causes Autism? Is there any treatment for Autism  Is it something that my son will grow out of? Is there any help for parents struggling with the diagnosis? My sons behavior began to get worse over time. He had stabbed his sister in the hand with a fork because she accidentally touched his plate while he was eating. My son began throwing fits when his shoes were out of place in his room. My son began throwing fits and screaming that he "hated" me all the time. Even when my son was yelling and screaming that he hated me, my love for him grew stronger and stronger.

4 years- Current age of 6 years

I enrolled my son into a early intervention pre-school program with the hopes that he would be able to increase his social skills and work on his learning disabilities. We continued to see the genetic doctor once a year, with the same battery of tests being ran, and the exact same negative outcome, I began to feel like I was out of options. I called my son "Boy wonder, medical mystery". My son started seeing psychiatrists all over the town that we live in for his behavior. The only thing they wanted was to dig into my younger years. My son was not the focus of these meetings. The doctors always asked me " where you abused, mentally, physically,verbally" I told these people this session has nothing to do with me. But, it has everything to do with my son, he is clearly the one having the mental issues. My son has had MRI's of his brain, my son has had blood test after blood test, sleep tests, brain wave tests. You name it my son has been a lab rat for the last six years since no one in this state can figure out what exactly is wrong with him. 

My son was going well in school. At the conferences with the teacher, she always told me that my son would not initiate play time with others and that was going to make him "socially awkward . I acknowledged what she was trying to tell me. But, if she would have listened to me when I told her my son was Autistic she would have known that he doesn't do well with making friends or making conversation. But, in this day and age the "authorities" or the "professionals" do not listen to the parents. What ever happened to "The mother knows her child more than anyone else?" Clearly, that doesn't matter anymore. The school that my son attended had a track break for the whole month of November and the whole month of March. For an Autistic child that is a change they cannot process. My son's behavior was out of control during those track breaks because he was out of his element. My son was now throwing fits at the drop of a dime. His fits have now escalated into kicking walls, trying to harm himself, trying to harm others. When I look at my child I will always see perfection, when he is in a mood all I see is rage. What I mean by rage is the look on his face is enough for any person to take on look at the blank stare on his face where his pupils have swallowed the beautiful, sparkling brown irises. When I see that look, I know that I need to not only protect my son, but I need to protect the other people around him. I remember telling my son that I loved him while he was in the middle of a mental break. I will never forget what he replied with. He turned his head to look at me with the look of pure evil in his eyes, with his fists clenched and said " I fucking hate you bitch, you should die". I knew that I shouldn't take the comment to heart because he didn't mean it. I knew that he was just in the middle of a break and I had to let him work it out on his own. Eventually, he was able to pull it together come out of his room and tell me " Mommy, I am sorry". I hugged my son and cried, because I did not know what to do to help me when he becomes that mad. I don't like doping my child up on medication. I want my son to have a normal life just like everyone else. When my son was medicated, per the doctors orders, he used to sit in the corner and rock and hum for hours. I would try to talk to him, but it's like the light was on but no one was home. He eventually snapped out of the zombie status and that's when I told the doctor no more medication that makes him like that. Stop testing all these medications on my child because clearly it is only making the situation escalate, and that's not what I wanted. For once, she listened to me. My son only takes on medication that controls his ADHD, he takes that medication so he is able to concentrate in school as well at home. My son went to the same school in town for 3 years. This year my little guy (not so little anymore ) started Kindergarten. I was so proud of him, he started to make friends on his own. He was always happy when he came home. He was always excited to go to school now. Now mind you, my son is still having psychotic breaks but not as much as he used to. This past week my son had a break. This one was because I told him that he could not take candy to school. My son then went into the kitchen and retrieved a fork and he was coming straight for me. He had that same blank and pure unadulterated evil look on his face.  I was able to restrain my son and remove the fork from his hand. I told him that his behavior was unacceptable. I chose not to send my son to school that day because I did not want to put anyone else in harms reach with my son's mental state that morning. I thought I was doing what was best for him. Clearly, the school thought differently. I got a visit from Child Protective Services the following day. Someone called them because I kept my son home from school because of his mental state. I was furious, I was protecting everyone. I know what my son is capable of when he is not in the right frame of mind. Every since my son was brought into this world he's been in the "system". There is no help for parents like myself where I live. The only thing the "professionals" want to do is medicate children to where they are unable to function normally. Law enforcement does not help either. There are no groups for parents to come together and learn from each other. There are services for military, or law enforcement or careers like that but there is no support system for special needs children with mental disabilities  I am sure I am not the only person that sees an issue with that. Parents need support, that does not make them incapable of caring for his or hers child. It just means they need help. They want to hear other peoples concerns with the hopes of what they do with their child can help someone else and vise versa. I am that parent that just wants to share her story, with the hopes I can help someone or someone can help me! To this current day, my son is still my little man, I still love and care for him unconditionally, he will always be "Mama's boy", I will still go to the moon and back for my little boy!!!!

Sincerely,

A mom dedicated to seeking support!