Autism & What The New Me Would Tell The Old Me

    Looking back on the last 10 years of raising Caleb, that sweet and sassy boy of mine who has autism, I realize there are things my current self would tell my former self. I'm going to share this 'conversation' with you. 
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   First, I would tell myself that getting a proper, thorough diagnosis can take a long (long, long!) time! 
   
    We had a doctor who seemed afraid to tell us Caleb had autism, in fact he told us he seemed "fine", and was just a little quirky. Caleb didn't speak a word at this appointment, he didn't make a sound. He was 19 months old and sat for the entire appointment turning a toy set of gears that had spirals painted on them. Quirky? Sure. But we knew there was more there.
 
     It wasn't until Caleb was 5 that we got a proper diagnosis. 
   
     I would also tell myself regarding the diagnosis to not be afraid of it.
   
​     During the waiting game, in the times Caleb went to his therapies, when I got asked 100000 questions from Doctors and specialists about what he could and couldn't do, and spending time at home with a beautiful young boy who seemed to care less if I played with him or didn't. It was all like an angry rain cloud, following us, building up and getting darker. 
 
     I wish someone would have said, "you don't need to be worried or afraid. Whatever the results, you will be alright".   

   I would also tell myself that it is ok to be angry. 

   I felt such shame and loneliness in the anger I had towards autism. I wasn't mad at Caleb, more at people who brought us down, therapists who didn't seem to care, with daily life, and angry with myself. 

   I thought maybe I had 'given' him his autism (the original thoughts on the cause of autism was that the child was reacting to a 'refrigerator mother'; a mother who was cold and uninviting). I had people who I trusted and who loved me tell me that maybe, perhaps I had given Caleb his autism while he was in the womb because I had gotten pregnant before I was married and I "didn't want him". I'm not lying, 2 different & very important people in my life uttered those hurtful words to me. The timing of the pregnancy was wrong, thats for sure, but I never felt any enmity towards that little person growing in me...but my trust in those people and their view of me and my life made me think, "yes, perhaps it is my fault, maybe I hated Caleb from the day the pregnancy test was positive and somehow that gave him autism...". The truth was, I was scared about being pregnant, I didn't know what life was going to look like for me, but I never thought "I don't want this baby". 

   What the current me would say to that former me is, "those people are liars! Don't let their words drag you down! You can be angry with them, what they said was hurtful!". 

   I eventually allowed myself to be angry, and to express that anger. Anger towards people who should have been supporting us but instead were making us feel thoroughly incapable of raising a child with autism, or telling us think it was our fault. Angry with therapists who judged Caleb poorly, and didn't give him a chance to shine or do his best, but seemed happy to let him flounder in the system (and made me feel dumb in the process).
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   But I also realized I was angry with autism.

   To be 'allowed' to be angry with the struggles Caleb had on a daily basis, to be angry with God and question why anyone should have to wrestle with, what us neuro-typicals call, "simple things". Angry with myself when I put my head on my pillow at night, wondering if I had done enough for Caleb that day. Just angry. Just feeling free to be angry, and knowing I was not alone in those feelings and knowing that parents raising kids with special needs all over the world were feeling angry with me. 

   To my old self I would also say, "you don't need to stick with or even try every single therapy presented to you!"

   I wanted to do everything I could do for Caleb when he was younger. Anything to make his life better, and hopefully easier, I was willing to try.

   I know now that there are a lot of very valid and helpful treatments available for children with autism, and they are not all for us. 

   As a parent of a child with autism, I need to use good judgement when it comes to what to 'try' for Caleb. Sometimes, in the process of raising him, things seemed so crazy, and so bad that I wanted to do everything I ever heard of or read or saw, and implement it into our lives. 

   We did a lot of the 'normal' things like speech, occupational, and physical therapy with Caleb. It became clear very early on though that he wasn't in need of a physical therapist at all. Caleb is not the least bit un co-ordinated, his gross and fine motor skills are (and always have been) 'normal'. 

   However, he needed occupational therapy for many years. An occupational therapist works on things like attention span, transitions to new activities, play skills (yes, playing is a skill!), responses to touch or other types of stimuli, some motor skills such as learning to use scissors, hold a pencil, or type properly, dealing with aggression, and interactions between Caleb and the people in his life caring for him. 

   Speech therapy for Caleb was tedious and sometimes felt pointless....because he had no speech! But my instinct was to stick it out because the therapist Caleb had was sweet and wonderful, and Caleb seemed to enjoy visiting her. She helped him (and me) understand that "language" or "speech" is more than the words we are saying. We can speak by our facial expressions, our body language including using gestures, with pictures, music and singing, and also by using sign language.

   Caleb learned to understand that words had meaning, and words had power. Caleb's speech and language pathologist offered a radical idea to us that echolalia (a condition that people with autism often display where instead of using their own words, they simply echo what they have heard you or a movie or the radio, etc. has said) is not such a bad thing, and perhaps should be seen as an encouragement with Caleb and his development up to that point. What she said about his echolalia was (and this was not a known idea or popular thought at the time) that it meant that Caleb's process of hearing words was working, and his brain was also capable of saying words. This was a revelation, and a great boost to us in the process of helping Caleb improve his long-term quality of life.

   Bleach enemas (yup, drinking bleach as a means to rid the gut of the bad bacteria that 'cause' autism), ingesting whipworms, hyperbaric oxygen chambers and chelation therapy (which removes heavy metals from ones system with chemicals) are just some of the "non-conventional" therapies offered (or peddled...) to help in the quest of making life better for those with autism.

   I agree that an immune system that isn't properly functioning can have an effect on people with autism (which is what the above  therapies are meant to heal), but that doesn't mean I will, at all financial and physical costs, try everything out there. 

   I think there are genetic, environmental and even dietary reasons for autism and it's varying symptoms, and it's part of being a caring, concerned parent to want to try things that may help your child, but exercising caution and wisdom is key. 

   One 'weird' treatment for the symptoms of autism is a hot bath. The idea first came when it was noticed that autism symptoms were lessened while the child was sick with a fever.
Researchers, from the Albert Einstein College of Medicine in New York, studied how it works, and one possibility is that it switches on genes that dampen down an overactive immune system, allowing the child to not need their usual stimulation (hand flapping, spinning, head banging, etc.) to feel calm.

   It's a little whacko, but it is a simple idea. There isn't any harm in it, and in truth, Caleb loves a hot bath anyway (well, loved. We now only have a shower, so he loves hot showers!). 
   
   Not every treatment is worth it, not every treatment is legitimate, and not every treatment is meant for life. 

   Caleb no longer has speech therapy, and the occupational therapists who would see him at his school have discharged him because his written output has improved and increased, and his sensory needs are being met through the school.     
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   The last thing I would have told myself is two-fold.Part One: autism is part of a spectrum of disorders, and one child with autism is not going to be like the next child with autism. And two: don't compare your child to any other child-with or without autism! 

   "A horse is a horse, of course, of course"....the theme song from "Mr.Ed"? It goes:

"A horse is a horse, of course, of course, 
And no one can talk to a horse of course 
That is, of course, unless the horse is the famous Mr. Ed".

   The truth is, "a horse is a horse" is false. Horses are ridiculously different from one another, whether they can talk or not! 

   The same is true for people with autism. Because autism is a spectrum, you can have highly functioning and very verbal individuals with autism, and people who are mentally & physically handicapped with their autism.

   Though, I do like the song in some ways because I like to think of my Caleb as Mr.Ed in a field of (regular old) horses.  :)  

   Just because you've met someone with autism doesn't mean that you now fully understand and know autism. I felt scared at times meeting people with very low-functioning autism and thinking, "oh no, Caleb is destined to a life of solitude and loneliness", or feeling happy meeting high functional people with autism and thinking, "Caleb can be that great". The thing is, both thoughts are wrong and can be harmful. Just because an individual is low functioning doesn't mean they are isolated or lonely, and a high-functioning person does not greatness make. I needed my new self to tell my old self, "Caleb is unique, he is your Mr. Ed in a pasture of horses (and all the other horses are someone else's Mr.Ed!). Take each encounter with other people with autism as encouragement, motivation, and  an opportunity to learn and grow in the understanding of autism and how varied it is".
   
   For part two, I would tell myself that comparing my child to any other child is absurd! 

   I spent so much time crying and being upset at play groups when I would size up my special needs child to the other, neuro-typical children. It's like comparing cookies with steak! They are not even close to similar or comparable at all! What a waste of my emotional energy comparing my child to others and feeling disappointed in him. Disappointed in Caleb, as if it was his fault!  What a waste! I wish I could go back and not give a crap! Just to be in places with him, to enjoy his company (even if he was 'ignoring' me!), to nurture him and invest into his life instead of fretting over his inability to sit at circle time! What a silly young Mum I was.....    

   So, old me, learn some lessons from new me! Well, that is impossible, but I am glad for all that I've learned, and I honestly hope that I can help a new autism parent not feel so alone or confused. I want you parents to know that it will be o.k., that you can feel angry and sad, that you can decide what is best for your child (and your family) regarding therapies, and that you shouldn't waste your emotional energy on comparison! You have your own amazing, special (special!) needs child, a child quite unique, probably full of mysteries, so just love on that person!

   I love Caleb with all my heart. He is full of trouble, but I like to see that sometimes....he's started calling me "weirdo", which makes me laugh. He has a heart full of love and empathy (and shows this in many ways), and he is truly, 100%, without a doubt, one of a kind. He shines brightly in my life, and in our family. 

   New me, tell the old me that everything that is to come will be worth it.    
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