Words that no parent ever expects is to hear that their child has something wrong with them. Whether it is as simple as chicken pox or strong as an unknown disease that you can barely pronounce. Autism doesn’t sound that bad though right? But what is autism and what does it mean? Well to be honest, I am still trying to figure it all out. That is exactly what is going on in my world lately. Our son has been officially diagnosed now with High Functioning Autism on the spectrum with Sensory Processing disorder. Well, at least we can pronounce it. How did it all begin, well I will tell you but please do not compare your child to ours as every child is different and our experiences may be just your child being his or her age.
While pregnant with Kameron, I was so excited to start experiencing everything I ever heard about pregnancy. I was excited for the kicks and the hiccups. I was looking forward to watching my alien belly move and honestly all the uncomfortable times that came with. He was growing normal and had a healthy heartbeat, but the darn kid never moved! He was just content very calm and enjoyable. I remember thinking, wow this is what everyone complains about? As we got further in our pregnancy, the doctors watched as he moved but just kind of as we called it in the late 90s, chillin like a villian. We got to about 6 and 7 months and the doctor was watchful and careful to not scare us that he was not moving enough. I as a new mother was not sure what it was supposed to be like, however, I don’t remember friends or family having to go through the visits we did after that. Twice a week for about 2 months, we had to go in and be watched for distress testing of Kam. What they do is hook you up to a machine and count the baby as it kicks. You have to sit still and they watch you for an hour. If the machine does not get enough kicks, they help it along. Kameron was a stinker sometimes and they would use this machine that would vibrate into my belly moving him and then he would kick in protest. Stubborn little man he is. If he didn’t kick enough at home, they would rush me back in and make sure again that he wasn’t in distress. Kameron was due August 1st and it was about May when I started showing signs of labor, scary I know. They were able to use medicine to stop my labor and I was put on light duty. Again in June, we experienced labor and they stopped it one more time. On July 11th as they were about to send me home because it was too early, my water broke. Kameron would not wait any longer to meet us. 3 weeks early and a bouncing 7 lbs and some oz, our little handsome man was born. Boy did we not have a clue what we were in for.
At about 3 months, he was as content as could be. He would sleep through Packer parties, loud noises, he didn’t respond to his name or rattles. Thus started our trips to the audiologist. Although they determined that he was okay and just displaying typical male selective hearing, it would not be the first time. About 6 months, he wasn’t really talking or crawling, it wasn’t until about 9 months that he finally crawled and almost 18 months before he walked. We did birth to 3 program to try and figure out what may be causing his delays. We just chalked it all up to being an only child who was privileged enough to not have to go to daycare. We enrolled him in an early pre-school hoping that maybe with more child interaction, he would start to catch up. We struggled hard with potty training, but again after talking to friends and family, who doesn’t with boys.
As some of you read from my previous posts, just over 2 years ago, I was going through the hardest year of my life. We had just lost our baby, I was held hostage at gun point and was just finding out that we were pregnant again with our now beautiful baby girl. What I can’t remember if we shared though was about 2 months after the robbery, we had learned that his pre-school teacher, who we will forever be grateful to for being so amazing and aware, noticed things of Kam that were not just typical of a 3 year old. He wasn’t just not listening, he was too engaged in sensory play that it was almost as if he was in his own world. He had been there for a year and she had gotten to know and watch him play and learn. He wasn’t catching on and growing in education as we had expected and she noticed so much more than we could have ever learned. While our minds were still racing from the last year, she suggested we talk with a teacher from the school district who would come in and observe Kameron and get her opinion of how he may be. This woman is also another woman will owe a great deal of gratitude to for taking the time to take him under her wing and help him more than we could understand at the time. She did see there was a need to bring him to her amazing world and help him grow. While it was so overwhelming at the time, we now cannot even imagine what our world would have been like had we not made the decision to move him into the school district special education program.
To pause on the history for a moment, how scary is the word special education to you. As parents, who are from the old school generation and not as familiar yet with the world of special education, hearing that your son needs special education when he looks so “normal“ is overwhelming. When we thought back to special education, we thought of kids with cerebral palsy, schizophrenia, children with very obvious conditions that needed assistance. When we looked at our child, he seemed “normal” he looked like every other kid in his class just behind. They must be mistaken, we thought maybe we just were not good parents and didn’t teach him how to do those things or didn’t know how to teach him those things. We didn’t have a lot of friends with kids his age so he didn’t know how to make friends, we had so much going on superficially, it wasn’t him it was us. I hear now that a lot of parents feel this way and if you want parents who could find all their faults, we can certainly be right up there with the best of them.
After break that year and still trying to recover from the robbery, deal with all that could come of a pregnancy under great stress, we tried to understand as much as we could. In just the last 2 months of school, Kam started talking more clear and he started to want to try more new things. As we spoke with his doctor, they started talking of Sensory processing disorder and things started to make ore sense. We were put onto a waiting list to get an official diagnosis. 2 years we were told.
He started to show new symptoms in that time. He was flapping his arms more, he had what are considered meltdowns which are different than children’s fits. With a meltdown, you cannot communicate with the child. They do not give any eye contact to see if they are getting their way, they do not make sense of a situation, it can be considered an over dramatic tantrum of a situation but usually caused by over stimulation and a reaction to change in their lives. They will flair their arms and cry so hard there is not comprehending what is going on. They may need pressure in certain areas to help calm them enough to comprehend what you are saying. They can be a danger to themselves sometimes while moving around their body. Think of a over tired 2 year old with a lot more anger and strong will but still not understanding. With a Tantrum, kids will often be looking to see if you are giving in, taking breaks from the crying to hear negotiating and will often stay in one place and pout with the crying. They don’t last very long and can be easily stopped with words.
We learned that he needed a very consistent schedule. We can tell the kind of day he is going to have by how his morning starts. If his schedule is changed, we know he will have a rough day. School breaks are the worst because he isn’t doing the same schedules as school at home. He needs that consistency or its meltdown town. He needs to do things in order and he knows his schedule and routine very well. When the weather changes and his outer wear changes, it is hard for him to understand because he is in that routine. Sounds are difficult for him, he had ear covers as overwhelming loud noises gives him anxiety. He sometimes gets used to it and will be okay but he needs to get into it first. His senses are heighten compared to most. Cutting his nails is like basically breaking his fingers. A bath is basically boiling his skin off and washing his hair, well you might as well have just cut his head off because that is what the screaming sounds like. We do not touch his face unless absolutely necessary , he cannot handle it. Although he is getting somewhat better. If he gets bloody noses, which he does a lot with the weather, its torture for both of us. He takes everything very literal and is very socially awkward. He thrives to make friends but they just don’t understand him because he is different. He likes things they do not, he thinks and acts differently. He needs to know why things works and how they work. He has been doing puzzles since he was about 2 years old. He can engage in a puzzle or leggos for hours without realizing that the world was moving around him. He is funny and has a contagious laugh. He has the memory of a sharp fox. He can tell you about something that he saw while driving down the road 3 years ago but can’t remember what I just asked him to do 3 seconds ago if I don’t have his attention. He loves to love and doesn’t understand he is being over baring with his affection. Some of his sensory overload is engaging in touch that may not always be appropriate. For example, he loves touching long hair. He loves how it feels and has had to learn that it is not okay to just touch hair. He loves to give hugs, we have had to work on asking permission first before just hugging. If he gets on a topic, we are working to help me move along to a new topic and have conversations.
Our new journey consists of an overwhelming amount of Doctors and verbiage that we are still learning about. Our new norm is staying consistent and patient in a time when normally most parents are like I”VE TOLD YOU A THOUSAND TIMES. If we lose it at that instant, it could cause a meltdown and at that instant it could be at the most inconvenient time. It’s us learning that food is difficult for him. He will not always eat what he is supposed to but he is eating and healthy so that is a start. It is learning to teach family that how everyone else gets to parent is not exactly how we get to do it and we need our team of family to be on board with how we need things done or you will make our life harder than it already can be. We don’t get to sleep in……ever, we don’t get to travel light and easy, and we don’t get to trust just anyone with our children. No it is not easy, not it is not the most difficult of diagnosis out there and we are grateful for what it is. We are not looking for sympathy but more awareness. We are grateful for having our son and the “problems” we have as we know it could be worse. We live every day for our children. We love everything about them and all of their differences. We pray every day that it will get easier for his classmates to love and accept him and learn about him. Every day can be a struggle. We start days where he feels like everyone in class is picking on him and he doesn’t want to go to school. Sometimes it is him looking at how they are reacting to him differently and he is seeing it as dislike. He just wants to feel accepted and welcomed in a world he doesn’t understand, by people who don’t understand him. Normal is only as standard as you make it. He is normal, in his world. Our son has Autism. It is what he has not who he is. ❤