Living in a Sensory World, Without all your Senses.

What is Autism? Many know, many think they know but most have no idea. I’m no expert and most of what I know is basic except for what my son deals with. He is considered High Functioning Autistic and has been labeled as such since he was 3 years old. Elias is 5 now, about to turn 6 in April and I’m questioning his diagnosis as I did the first time I heard them say the word. 

My son was born in April of 2004. But he didn’t come easy. I had high blood pressure and my doctor recommended I be induced a week early. I wasn’t happy about this because it didn’t prepare me the way I wanted to be prepared. I was terrified of giving birth and thought when those contractions came…I would have no choice but to be ready. Nevertheless, the High Blood Pressure scared me into agreeing. This was my first mistake. 

I was a big momma. I hadn’t gained the normal 25-35 lbs. I gained 75 lbs. They thought my son was huge and before they began the inducement, the ultra sound tech figured my son to be at least 10 lbs. That morning, my contractions began and I told my doctor I didn’t think I needed the Pitocin they were about to give me. He didn’t seem to care so I went along with it. This was my second mistake. The Pitocin started around 10am and I began Hard Labor pushing at around 8pm. I pushed and I pushed. In fact, I pushed harder then the strength of my contractions. The pain was unbearable and the Nurse was a joke. My doctor was no where to be found. By 10pm, I was worn out but pushing I was and little Elias wasn’t budging. Then 1130pm came around. By now I wanted to kill myself. I believe I was screaming, “Please just kill me”. The pain, the pain, the pain! My doctor showed her cute little face and I believe I fantasized of punching her lights out. She said that if by Midnight he wasn’t down, I was going to have a C-section. I was watching that clock like an eagle! I couldn’t lay still, I remember tossing from side to side and I even dislocated my husband’s thumb thru the process. FINALLY, sometime after midnight, the doctor came in to tell me I was being prepped for the surgery. My anesthesiologist came in and had a look of shock when he saw me screaming and crying. I remember him saying something like, “Don’t worry honey, I’ll make the pain go away”. I don’t remember much after that. My son was born and I remember my husband saying how beautiful he was. Then I began screaming in pain because I could feel them sewing me up and it was like a movie. The anesthesiologist came above me with a mask and light’s out baby! Elias was born at 1:22AM on the 22nd of April. He wasn’t 10 lbs! He was 8 lbs 7 oz and only 19 1/2 inches long. But strong he was. In recovery I held him and he lifted his head on his own to reach for milk. The nurse was amazed, I was too drugged to realize. 

2 Weeks old

So, what the hell does this have to do with my son’s condition? I think it has a lot to do with it. My son was wide-eyed from the moment he was born. Always looking at everything but me. He couldn’t sleep alone, it seems he needed that touch. The moment we put him down, no matter how soft and gentle we were, he would begin to scream. After 3 months of sleeping between us, we began to move him to the crib. It took months. We would have to rub his back and try to sneak out when we were sure he was asleep. Sometimes it worked, most the time we were running back in to start the process all over again. This lasted until he was almost 4. At his two-year wellness appointment, his Pediatrician was concerned. He wasn’t saying more then 5-10 words. He wasn’t even saying “Mommy”. We had therapists come to the house and work with him. They concentrated on sensory and gross motor skills. After a year, they didn’t know what was wrong and suggested we get him evaluated. We did, and that doctor thought he had Autism. I was in severe denial and 6 months later had him reevaluated by a Child Psychologist. She agreed and the label stuck. 

I moved back to the states 1 year earlier then my husband because there were no services for Special Needs in Germany after 3 years old. When I got to Colorado, I enrolled him in Speech and Occupational Therapy. It did wonders for him.  When his dad got back, his speech improved 10-fold. It was amazing. But there was also fights brewing with the pre-schools. They weren’t listening to me and in short, didn’t believe me. Usually 2-3 months later, I’d get a phone call that they didn’t know how to handle him. It was a nightmare. 

Then we moved to Albuquerque. Things were ok here until he started Kindergarten. I was fighting with the Peds Clinic to get him back into therapy and finally..after 6 months got him in. Liz is his therapist and she is a wonder. She runs Indigo Therapy  (site is under construction) and I love her! Liz believes that Elias may have Sensory Processing Disorder  and not Autism. The more I read about it, the more I’m convinced this is true. 

Elias is very social, very loving and has a thing for the ladies 🙂 He tends to take the younger children under his wing and loves adults. 

The problem is, Sensory Processing Disorder is not a recognized diagnosis…yet. Autism is. There are many facets under the umbrella of SPD. My son would be considered a “Seeker”. His Nervous System doesn’t process things as easily and therefore, he tends to be more rough, does not understand personal space and fidgets constantly. Because of this, it effects other things. He doesn’t know how to calm down, his focus is two words deep, he chews on his shirt sleeve or collar, he has to smell everything and he doesn’t understand the pain he feels is what others feel. On the plus side, he eats almost anything. It’s shocking really. He loves olives, every kind! Pretty much every vegetable, lamb, spicy foods, sauerkraut! Sometimes I watch in awe when he eats. 

Autism is a spectrum. It goes from sever cases to the opposite side. There was talk of sensory issues being included in the criteria of Autism but I don’t believe that has happened yet. Most people, including our lovely educators out there have no clue what Autism entails and most, when seeing my son, deny that he is Autistic. But if you look at High Functioning, many of Elias’ issues fall under that label. 

Before Elias, I thought most of these issues that children deal with were bullshit. ADD, ADHD, Autism…all of them. Well I’m here to tell you, they are not. ADD, ADHD and SPD are very similar and make complete sense when you think about it. How many of you can’t sit still during a meeting? Have to tap your toes or click the pen constantly or tap that pencil? How many shift in their seat? I challenge you, at your next meeting to watch other people and see what mannerisms they have. You may be surprised. But what does that mean? It means that their Nervous system is getting too much or not enough of something. These little ticks we have subconsciously help us deal with it. A child who has ADD, ADHD or SPD has the same problem but it’s more severe. You may think we have 5 senses, but we have 7. Smell, touch, taste, hearing, sight, vestibular and proprioception. Children are either Hypersensitive(Avoider) to any of these or Hyposensitive(Seeker). 

Micheal Odent  believes that C-sections, especially emergency c-sections may be having a long-term effect on our kids, more then we realize. Its a fascinating read and also talks of allergies and Anorexia (A disease he believes to be the female version of Autism). Though I can’t write a book on here, after all the research I have done, I have to agree that what he has compiled makes sense. 

I plan to continue this discussion on here and hopefully enlighten the unenlightened. I’m here to tell parents of Special Needs children that it is ok to panic but there is help out there, progress can be made but don’t fight it. There is no use for that and it only ends up being counterproductive. 

There are many theories, some I don’t believe. I don’t think that vaccines are the issue and feel that some parents are forcing it so they have a point to finger at. I think this is more complicated but still, we may have someone to blame. Doctors mostly. I feel that C-sections and inducing has become a way of life. Yes, there are times it is needed, but these days, it’s like the “easy” way out. 

I feel like this post is a little discombobulated but the information out there is strenuous! Which is why I will touch on this subject again and be a little more concentrated on certain aspects. It’s easy not to believe when it isn’t your child. But Elias is mine and everyday I pray he gets better, that he doesn’t hurt someone at school and that he learns what he needs to make it outside mommies protection. 

March 2009