At just over a year old Alexander started banging his head and I thought nothing of it, I mean I googled it and asked other parents and I always got the same answer its a phase he will grow out of it. He became a poocasio (smearing, digging and eating his own feces) and heard again its a phase he will grow out of it. He was saying words and we were so excited! He barely answered to either his name or his nickname and rarely made eye contact but I shrugged it off. He was happy, healthy, active and full of joy so what if he wasnt talking that much and these phases of head banging we could get through same with him being a poocasio. I was a first time mom and pregnant with his younger sister and he wasnt displaying behaviours I had seen my brother do as a kid so I never thought my baby was autistic.
Fast forward to 15 months old... He has now lost what words he did say, he would scream because he could, he found anything hard to bang his head off of, he still wasnt making eye contact or answering to either name. My sister, my mother, even my nurse practitioner said he needs to be assessed he hasnt stopped doing those things this is not a phase. He didnt play with toys in a normal sense, he would lime them up and god help you if you moved them out of order. He wouldnt wear clothes he screamed when you dressed him and if you did manage to get clothing on him he had it off faster than you could imagine. And yet I still denied that my son could be autistic. My heart knew but my mind couldnt accept it. I told myself these things were because he was going to be a big brother and he was jealous.
At 18 months his sister was born! When he visited us in the hospital he didnt care about het at all and just wanted his mom. We had only ever been apart overnight from each other maybe 3 times due to my post partum and all that came with it. We thought ok this will be ok, its going to be tough juggling two but so far he is ok with her. That sadly was not the case. The poocasio behaviour got worse, he started to regress sleepwise, he became more violent towards the baby, myself and himself. The head banging increased to the point I thought he would do serious damage to his brain. I finally agreed to have him assessed and got him into speech therapy through our local program Language Express. Thats when he met Lydia.
Lydia watched him and said we need to have him assessed and I cried. To me he was perfect but she saw the red flags that my mom, sister and NP saw. And so she talked to my doctor and we got a referral into cheo for him. He continued to head bang on cement, marble, anything, throw things at his sister, poocasio, would smash his face off mine causing black eyes. And he still wasnt talking. Lydia gave us help in encouraging him to talk, gave us strategies to do at home to up the communication and helped us help him to make better eye contact and he started answering to his name!
We waited until after his 2nd birthday for that call from CHEO and it came when he was 2 yrs and 2 months old. We had our first appointment Dec 18 2017. I was terrified I didnt know what to expect bit knew we needed help and answers. I was 6 months post partum exhausted and suffering again from post partum depression and anxiety. Our house was a hot mess and his behaviours were increasing.
When we went it was fairly straight forward, medical history, a quick exam and observing him and an appointment to come back in January of 2018 for our second appointment with the pediatrician and a speech language pathologist. We had been working with Lydia still and there was some improvements but we still has a long way to go. It was hell waiting for that second appointment. We battled through Christmas and balancing his needs and our families wants to see him and his sister. We almost got divorced that year as it was almost too much between a new baby who never slept, my son being so violent and sheer exhaustion. My husband refused to believe that our son could possibly be autistic and his family screamed the same. There was nothing wrong with him I was ober reacting.
January comes and so does our second appointment. I tried to prepare myself for what they would say... I knew at this point that yes he was autistic and that life was about to change. Well Alexander was in fine form that day, he showed him his sweet side until he was done with them then the spawn of satan came out and the violence began... He started to self harm and yell. He struck me because he was over this whole circus. He threw things because he was tired of his space being invaded. And the pediatrician looked at me and said we dont need a 3rd appointment. Your son is Autistic. The second she said those words my heart shattered. How could my perfect boy have that label on him? Was it because I had a sip of beer at my wedding? Did I lift something too heavy and restrict blood flow? How could I have screwed things up so badly? All these crazy thoughts ran through my head while I sat there sobbing and my son screaming that he wanted a toy they had put away. What would his future look like? Will he ever make friends? Will he ever talk? The pediatrician handed me his formal diagnosis, some kleenex and a list of numbers to call to get set up with programs. No information on his severity, no recommendations on how to help him just a diagnosis, some kleenex and a list of numbers.
I remember walking out to the waiting room wondering how my world could shatter in the space of an hour while trying not to break down again. My mom sat there with my baby girl and waited for the words she knew were coming and all I could do was cry while holding my son. I knew that someone on the spectrum could lead a "normal" life - my younger brother was proof. He finished high school, went to college 4 hours away from home, has friends and partners, holds a full time job... It could be done but you never think you would hear those words about your child. My mom held me because she knew what I was feeling, she knew the heart ache, and the questions swirling through my mind.
She said to me ok time to get it together. HE IS THE SAME BOY HE WAS BEFORE YOU KNEW. HE IS STILL YOUR BABY. Grieve for what you thought his future looked like but only do it for a little while then its time to put your big girl pants on and get him what he needs. I gave myself 24 hours to grieve, cry, scream and be mad - to get it all out. Then I told the rest of Alexander's family. To say it didnt go well was an understatement. There was screaming and crying, words thrown around like "damaged" and it was ugly. The denial was strong on one side of the family. For the sake of my son and myself we took 3 months off from that side so they could educate themselves and so he would never hear those ugly words again. Because he was not "damaged" he is unique and brilliant and just sees things differently.
And so I made the calls to Autism Ontario got on waitlists, did a one time consult for OT/PT, met the LIEP worker for our area and talked daycare. We continued with speech through Lanark County Programs with Lydia and we saw progress. He could make eye contact now, answer to his name, he could do simple requesting and he was starting to allow us to play near him. These were HUGE achievements. We waited for behaviour to contact us while his behaviour and meltdowns got more violent. During this time he would try and shove his sister over if she came near, tried to jump on her in her play pen, would try to throw heavy objects on top of her, try to push over her high chair with her in it. It was getting worse. There were days I would put him in his crib and sit outside his door holding his sister to protect her and I from his physical attacks ( biting, scratching, punching, kicking, head banging etc) so he was safely contained and so were we. I have had to call friends and family to come intervene or to take my daughter so she was safe. And he kept hurting himself.
By age 2.5 he could literally beat me up, he would run out into the street from our back yard (we live on an extremely busy main street with transports going through 6 days a week), he has streaked through baseball games (the diamond butts up against our yard), he has take himself down to the beach (at the bottom of the hill from our home). He would unlock our door and run outside. On day i was changing his sisters diaper and he was right beside me, our back doot was locked ao I wasnt worried if he wandered to the kitchen. The next thing i know hes not beside me- i put his sister in her crib and frantically search the house, then i see the back door open and panic! I looked in our back yard and hes nowhere to be seen so I ran through the house to check the drive way when I heard a knock on my front door... There he is naked and proud that he knocked but couldnt open our heavy front door. He could have been killed! All because i had to change his sisters diaper. We now have alarms on our doors leading outside. He has managed to get keys to the side by side and turn it on- never been shown before hand he just figured it out. Hes locked himself in a car after using the remote to unlock the car to get in it.
At about 3 years old we had slowed down on speech and he had begun daycare for socializing and in hopes he would learn from his peers. This is where we met Myles his one on one at daycare. Between Myles and Donna (his teacher) they have worked miracles. They havw managed to get him to start using the potty, wash his hands, sit at a table, play with othet kids and engage them, etc all things we thought would never happen. We FINALLY got behaviour involved. We nmet Joanne. She has been a life saver, she observes him regularly at home and in daycare. We have been working together on reducing harm to himself, to us and working on transitions. We have also come up with ways to make our house harder to escape from and how to keep things out of his reach ie chemicals because pretty much anything thats not on the ceiling or nailed down he can open. Let me tell you it is terrifying and frustrating.
I just registered him for Jk come the fall and Im worried. Yes we have behaviour following him, am amazing teacher at school who gets him to sign more and talk a little bit, his awesome one on one who patiently guides him through his day, speech following him and giving suggestions on how to help but he will have basically none of this when he starts school. We have had one case conference so far with everyone including the school to give the school an idea of what he will need and we have another coming up before june to get a solid plan in place to help him transition. But he will also be going from a class of 8 to a class of many more kids with a shared EA and i worry. Sure he can almost dress himself but hes not potty trained, he can somewhat request what he wants but he is basically non verbal ( he has about 40 words and only uses about 15. He has 3 main sentences he uses constantly and thats it), if routine stays consistent he can follow it well but if there is a big change it can go ugly fast. He has poor impulse control, he can walk beside you perfectly fine then the next second bolt. He can undo locks, he can easily climb anything in his way and he cant talk. And we are still waiting on therapy.
He has made leaps and gains with the community based programs we have used but I wonder if he had been able to access ABA/IBI how much further he could be right now. I worry that when the OAP funding finally comes through if I will have to choose do I use it for him to finally communicate (hopefully) with us or do I use it to get his outbursts under control if we can find a program that would only use the funding as we just dont have the money to pay privately for therapy. The new OAP is definitely making it harder to make sure his needs are met, atleast with the last program there was a chance he would receive therapy that would help him and we didnt mind waiting our turn because it would be worth it in the end. Now I just dont know if we can give him what he needs and deserves.
Alexander is amazing, he can ask you where something went and say dinosaur but he cant ask for milk or say mom. He can figure out mechanical things and locks in no time but cant recognize letters or numbers. He can remember what days he goes to daycare but cant handle tags on his clothing. He can undo his carseat but cant use the bathroom alone. Hes so smart and yet he cant tell us what he needs, if something hurts, if hes scared or sad. He can only act out and try and communicate by yelling, pointing and using his body (ie slamming it into a door if he wants to go outside). He has so much potential and Im terrified this new OAP is robbing him of his future, of his chance to say I love you, to succeed in school and to do all the things his peers do.