The pregnancy was so very exciting. This child was so very wanted, and planned..for years! I was single and had waited for so many years until my career was perfected (to my standard) and had secured a nice large home in a quiet and beautiful neighborhood. The school district was outstanding and everything else was just perfect! In addition, I found out that it was a boy! That was the icing on the cake! I had a girl already and she was nearing 16 years old. So many people had asked me over the years if I didn’t think that I should have another child while my daughter was still a small child herself, if not for my sake, for hers. I thought not. Prior to that, I did not consider myself in the optimal position to have another child. I also wanted to spoil her rotten, giving her all of my attention and all that I did not have as a child so I kept her being the only child for a very many years.
The delivery did not go smoothly which is another story entirely but when he came, the first thing I noticed was the “high-pitched” cry. Tale-tell sign of neurological problems known by all medical people such as myself. The doctor ignored it but when I would not shut up about it, a delivery room nurse shuffled over to me and whispered quietly in my ear, “I know what your talking about and I am sending him to the NICU”. My heart sank. What I really wanted to hear was a negating of my concern, something to put me at ease, someone to tell me that it was nothing and that maybe there was just some other reason for this blood curling cry!
I could not hold him for 8 hours as he was whisked away for a multitude of tests, which eventually procured a clean bill of health for him.
When he was brought to my room, and after the nurse left, I noticed some bluing around his lips also known as circumoral cyanosis. I called the nurse and she stood right there in front of him and reported to me that she saw nothing unusual..(great training and experience that one had, I tell ya!)Ha!
I took him home and within the first 12 hours, he stopped breathing 12 times. When he started to drift off to sleep, with each breath, came a very loud, audible stridor and when I no longer heard the stridor, he had stopped breathing.
Long story short, it took me nearly 3 months to get him on an apnea monitor and round the clock watching of him (mostly by me) to ensure his survival. The pulmonology specialist took one look at him, folded his ear into his ear canal and reported “he has a very severe case of laryngomalacia!” No kidding??!!??! Ya Think??!!?? Thank you Dr. Riseman for paying attention.
Nothing got easier after that except that I could sleep more than 15 minutes at a time. He hadn’t been very successful in the feeding department and we all thought that it was due to the ole “suck, swallow, breath” mechanism having difficulty because of the laryngomalacia so I spent massive amounts of time feeding my poor baby in an attempt to avoid him having to have a gastrostomy tube placed. After all, I was a pediatric RN and I had all of the skills to help.
Time dragged on as many childhood milestones came and went without him meeting them as expected. Each day was a carefully calculated effort to ensure his needs were met. He did not like to be touched and never did the “cooing” thing that babies do. He also avoided eye contact even in infancy. He seemed lost inside of himself, tucked tightly away behind those baby blue eyes. I tried everything I knew to try to get something from him. I wanted so badly to love on him and shower him with kisses that mothers give to their babies but he screamed if he were touched for more than a few seconds. He arched his back and screamed when being held, he screamed and kicked when I tried to pick him up…I was devastated but more importantly, I felt heartbroken for him.
When he was two, he had begun to walk some time before, but he wandered aimlessly through the house lining things up and when done with that, laid in the exact location every single day on the dog’s tail. It had to be the dog’s tail or he would scream….poor Sargie…what a good dog he wasJ! It was apparent by that time that he needed rigid consistency. For instance, if his shoes were put on while placing him in a different position, he would stop eating. There were only a handful of foods that he would eat (he never ate baby food because he puked every time any of it or other foods of that consistency touched his palate) and if they were prepared differently such as adding pepper or if they were positioned differently on his plate, he would stop eating for prolonged periods of time...and I mean days! It became a matter of his survival for us to conform to his need for rigid consistency.
I knew there was something terribly wrong but the day to day struggle consumed me to such an extent that I felt that I was putting out “fires” for him at every turn and never had a chance to sit down and eat or sleep for more than a few hours, much less pull all of this together…until…one day, noon, on the back steps of the house, there he was toddling along, I had his favorite cookies in my hand and he came to me for the cookies. I could call his name all day long and he would barely acknowledge being spoken to but the cookies would get his attention. I handed him one, he took it in one hand. I handed him another and he dropped the previous cookie to take hold of the new cookie. I watched carefully his expression as I handed him yet another cookie only to see the last one he held fall to the ground. My heart did not sink, it did not drop, it plummeting into a black abyss of hopelessness and helplessness and unrelenting sorrow as the light in my head came on full wattage to the unyielding realization that MY SON is severely damaged. He could not grasp two items simultaneously. He could use both hands to hold onto one thing, a bottle, a toy car, his shoe, but he could not command his mind to take and hold onto two separate items with his two separate hands. It began to come together and no longer did the little details of day to day survival take precedence, but now, the BIG PICTURE. I had seen it all before in all of my years of nursing but never let go of that hope that maybe he was just delayed, maybe he was just the most difficult child known to man. I mean, after all, I was a bit stressed during pregnancy and the delivery did not go smoothly for either of us. I just hoped that it would resolve itself, that the controlled environment that he needed would help him come out of it. Now, that hope was gone.
I started making calls, fought with the insurance company and finally got the referral for the evaluation that was to be all telling from All Children’s Hospital. Back then, and my son is now 9 years old, they did not like to give the diagnosis of autism. It was taboo. Do not ask me why but from a professional standpoint, I would venture to say that they really just did not know enough about the diagnosis or treatment to brave such a tragic label. Anyway, my son was diagnosed with all of the symptoms of autism such as dysfunctional sensory integration and pervasive developmental delay, but not the all encompassing diagnosis of autism. What they did not consider back then was that without the formal diagnosis, services were limited as well as any support. I argued with the doctors over there and left frustrated and angry as this meant that while I worked, there were no services available for my son. Therefore, if I were to work, I would have to put him in an environment that would cause irrevocable damage to any and all the progress I made with him by controlling his environment so tightly. I was a single parent with no family to help so what was I to do with him? Up until that time, I had worked only a couple of days a week, barely squeaking by, and my teenage daughter who adored her baby brother, took care of him. I worked night shift as that was the only way that I could possibly leave him in anyone’s care that was not a trained individual and I sincerely thought that by taking him for services, something would get easier…it did not but rather became more difficult with additional demands being placed on me. It was absolutely counterproductive.
From the All Children’s Hospital evaluation, he was approved for in home speech, occupational and physical therapies. Three times a week of each. That would last until the age of 3 and at that time, he was 2 ½ years old. All services in the state of Florida end at the age of 3 and then private insurance is required to pay. I had private insurance for him but the private insurance I had would not pay for those services unless he needed them as a result of a traumatic injury, not a developmental problem. Did I mention that I could not put him in the car? Movement of any type sent him into hysterics. He would scream the most God awful screams of pain and it never ended with him falling off to sleep as is normal with other children. So, actually going to those therapies was impossible and that is how they were approved to be provided in the home.
This is what I did: I knew he was autistic, whether they diagnosed him or not, I knew from years of working with children with birth defects, injuries, delays and the like. With that knowledge, I proceeded to feel my way around my son and absolutely and unequivocally, meet his needs. By this, I mean his needs, not others and not mine! I looked at him, I watched him, I lost myself inside of him and became him and that alone brought him out of the darkness. With a child like this, only the greatest amount of love has a chance of breaking down that barrier between our world and theirs and that is what I gave to him.
He hated certain sounds, a cow mooing, a duck quacking, the sound of a lawn mower down the street and any other unexpected sounds sent him into hysterics. I desensitized him by getting these sounds on tape and playing them in a subliminal fashion over and over again until I could turn up the volume just enough for him to barely hear them. That, eventually, progressed into playing these sounds at a normal level without him melting down. It took time and careful attention to every little detail of his expression and body language, but it worked.
Next, and this was for me as well as him, but I wanted to hold him, to hug him, to kiss him without it being twisted in his sweet little mind as something not wonderful. I started trying many different textures of fabric and lightly brushing his extremities with those different choices. He had distinct likes and dislikes of fabrics that touched his body and when he chose one, by not crying or trying to run from it, I began 3 times a day, brushing his extremities back and forth with this material, then would move to his body’s trunk and repeated this. After only two weeks, he laughed for the first time in his life when I tickled him with my chin on his belly. As a matter of fact, that was the first expression in his life other that screaming and flat. This was groundbreaking because before that time, he would scream if anyone put their face close enough to his face to do that. Not only did he not scream that time, but it was a positive experience. You see, autism is like that…small steps…small things make a HUGE difference! This was the beginning of an overall improvement of the severity of his condition. He still would not make eye contact but I worked on that as well. Up until that time, if anyone tried to make him make eye contact, he would scream so what I did was follow his face with mine…from a distance mind you and that is VERY important…from a distance at first. I remember the exact moment that my lovely son seemed to see my eyes for the first time. It was only a nanosecond but the amount of time did not matter because it happened. With autistic children, when they are very young, if you can change something slightly, you may be able to change the same thing on a larger scale…this was hope and that is all that I ever needed to have. Now, I am in no way saying that I believe there is no hope for the older autistic children because there is but what I do know is that studies have shown the greatest amount of progress, if interventions are made at a younger age.
These methods that I used with my son are purely developed around him. For example: when he was 3, the only time I had seen his expression change was when I tickled him on the few occasions that he allowed, so I took to the stores. There just had to be something in the world that was inanimate that would change something. I was looking for even the slightest twinkle in his eyes to give it away, to me, that he was thinking about it…whatever it may be. After many many trips, it was a truck that talked. He didn’t smile or change his expression but he LOOKED at it which was more than anything else I had seen him do before. I bought it. I continued to make trips and I bought everything that held his attention for more than a half second. Before I knew it, he had over 100 matchbox cars and various trucks of all shapes and sizes that he proceeded to line up in an exacting line everyday. If the line was not perfect, he screamed and I fixed it and he stopped screaming. Throughout all of these seemingly small indicators of progress, something was happening: he was attaching himself to me. This attachment IS the progress for autism! I related to him in his world and slowly brought him into mine.
His diagnosis has been downgraded to Aspergers Syndrome but he started with full fledged Autism. I cannot stress enough how the smallest of progress that one might take for granted with other children, needs to be focused on with these children. It may mean the difference between a diagnosis and a prognosis.
He is 9 years old now and he is my angel! He is not without issues but is mainstreamed in school, continues to receive 4 days a week of speech therapy, is in a central auditory processing program outside of school and in a social interactions group outside of school. He is genius level intelligence but has a terribly difficult time applying it so I spend hours a day directing him academically. This is one way of life for parents with autistic children. Each child is different and will have different “outs” from their seeming seclusion. It could be music (and believe me I tried that by buying an old second hand piano, playing guitar and many obscure instruments from the furthest reaches of the world...lol), it could be video games (crash bandicoot was the next thing in his life, after the talking truck and cars, that held his gaze for seconds), it could be flowers but whatever it is, FIND IT! It is there, travel the world if you have to and you may just save your child!