So, I began blogging before Erik had a diagnosis. All I had in the beginning, was the confirmation that something was not right with my son. The most likely explanation was Autism, but nothing was guaranteed, formally acknowledged or investigated. So really, this blog has followed that journey from the outset. I have learned so much about myself in this time, and various elements of the journey have become clearer. I know I have said this before, but I truly never expected to be here, now. This adventure continues to surprise me - in good ways and bad - and I find myself often having to find reserves of strength and mental resolve to get through. When I look back, I am amazed, absolutely amazed at where I am. Never in a million years did I think I could cope with the things we have been through. But I did. We did. And we are still here, going strong. My God has not left me once during that time, even when I thought I was completely alone. Looking back, I can clearly see the hand of the Father upon my life. And I know that were it not for His grace, there is no way I could have come through this the person I am today. I have been unfaithful to Him, but He has been always faithful to me. This blows my mind and humbles me.
I want to re-share a post that I wrote in March of 2011. I wrote this about one year after the formal diagnosis, and less than two years after the actual events. This post details the feelings and reactions that surround the day I was told, for the very first time, that something was wrong with my son. There are earlier posts that talk about what I was feeling and going through as it happened, but being a reflective person, it usually takes a while before I can really process and recognise exactly what is going on. Things often don't sink in enough for me to make sense of it right when it happens. But this post, this one here, really details where it all started. If you want to read it later or at the original source, here is the link. But if you care to read it now or can't be bothered clicking the link, I've copied and pasted it in this post for you.
It is longish. You might want to grab a coffee. And maybe some chocolate :)
Retrospect Part 1: Unexpected News.
Burned into my memory forever... a day I will never forget as long as I live...
The day dawned bright and warm with a sweet cool breeze on the day I took my son to his routine 18 month MCH check. I felt a bit guilty because it was actually several weeks too late.... he was already 20.5 months old. Oh well, better late than never - right? Once inside the office, we started going through the regular stuff.... only this time, it wasn't so regular. My answers to her questions were not "Oh yes, he is doing that"; they were more like "Um... I don't really know". At first, she didn't show too much concern. Just quiet nods and a gentle "ok" was the nurse's response. I started to feel a bit embarrassed about my answers. I couldn't definitively say yes to anything, really. I felt stupid, or worse - neglectful - like I didn't know my own son....
"Does he look at you when you call him?"
"Well, no, not really. But I think that's because he doesn't know his name yet".
"Oh! Doesn't he recognise his name?"
"Um, I'm not sure. But we call him 'Mr Man' all the time anyway... maybe that's why."
"Oh, ok! Does he respond to that then?"
*Pause; Think*. "Well....no, not really"
"Ok. ... And how many words do you think he says?"
"Oh, he says maybe.... um....3 or 4 I think?"
"No more than that? Ok, that's ok. What are they?"
"Um... come to think of it, I can't recall what they are specifically now". *Chuckle; Pause; Think*."Now that you mention it, I can't really think of any. - Oh, he said 'Leila' the other day! We were all at the dinner table, and I was calling out the girls' names to try and get him to learn them. And he said 'Laay-lahh' just the same as we said it"
"Oh, ok good! And has he said it much after that?"
"Well, no, he hasn't said it at all since then."
"Oh, ok. And you can't think of any other words he says? Anything at all? Even sounds for things? Maybe 'ba' for ball or something?"
"No. Ohh... he says 'this' and 'that'. He says them alot!"
"...'This' and 'that'....", she writes in her notes.
"Yeah, it's cute. He goes 'dsss dsss' 'dsss datt'". I am feeling a bit better now. She looks up at me....
"Good! And does he say them when he points at things? ... Or when you point at things?"
"Ah...no. He just sort of says it as he walks around. He never looks when I point actually."Embarrassed again.
Basically, she became more and more surprised at his lack of development. At that age, he should have been saying around 5 words. If no words, then he should have been understanding simple commands at least, like 'get your shoes' etc. But he didn't. He wasn't pointing or using gestures. He didn't look when I pointed at something to show him. He wasn't climbing up and down chairs or the couch. He wasn't taking his own shoes and socks off. Wasn't using a spoon, and was only using a sippy cup. Didn't point to his eyes, nose, etc. Could not scribble - wouldn't even hold a crayon. Turned pages in a book, but would not point at pictures or listen to a story.
In fact, all he would usually do, was walk around. Just walk around. He hardly played with his toys, and when he did, it was the same ones and he wasn't rowdy. He preferred to do a simple puzzle or sort shapes. He never played with his trucks and cars. He had a little train that he adored though. It popped balls out around it's top and drove around with music. He would pop balls into it and watch them come back out for ages. He never pretended to make me a cup of tea, eat food, or talk on the phone. I argued that he hadn't really watched me do those things, so maybe that's why he didn't learn? His eye contact was there, but it was fleeting. He didn't really respond to his name. The list went on.
I began to feel as though I had neglected my son very badly. Why hadn't I taken the time to teach him this stuff?
At the time, it never occurred to me that I didn't exactly sit down and 'teach' this stuff to my daughters.... they just did it. They simply learned by watching and imitating me. This was confirmed to me just the other day when we found the Baby Miss (16 months now) shuffling around on her bottom and babbling into a toy phone. Out of all my children, I have spent the least amount of time with her, and I certainly never sat down to specifically show her what I do when I use the telephone. She just watched and noticed and learned. My son, on the other hand, didn't even pay attention.
We moved on to the physical checks.... height - in the 90th percentile; weight - also in the 90th percentile; head circumference - completely off the charts! He was a big boy for his age. He was going to be tall and solid, like his papa... I was so proud. He was upset for the whole thing, and when we came to weigh him, we couldn't keep him on the scales, he was that upset. I sang a song from one of his favourite dvd's to distract him. The nurse thought that was clever. The dental check was fine, but he dribbled alot... and I mean alot. So much so, that I still had to keep a bib on him all the time. Must be a boy thing, I thought.
We came back to the desk to chat. Very gently, the nurse told me that my son was not meeting enough milestones, and it was a matter of concern. She said that there were early signs of autism, and that he would have to be closely monitored. She showed me the autism/developmental delay checklist given to all nurses and pointed out all the places where he was meeting the criteria. She strongly suggested I see a paediatrician. She told me it was entirely up to me, but that it would be good, even if just to rule out autism or anything else. All the while, I smiled and nodded. I was completely unconcerned. I thought:This lady is a bit paranoid I think. Every child is different and develops at different rates. Surely he is just being a boy - he's different to the girls. I was completely unruffled, but I like to be informed and I like to know stuff. So I agreed to a referral for a paedie check.
I went home thinking I had interesting news for my husband. I hoped he would not freak out. I was still unconcerned, but thoughtful now. Very thoughtful. I kept thinking about that checklist. All afternoon, I would glance at my son, and wonder... shake my head... go back to what I was doing... glance at him again.
I didn't realise at the time, but something changed that afternoon. I began to look at my son differently, I could not help it. This was a pivotal point in my journey.
With everything he did, I wondered; Is this normal toddler behaviour, or an autistic thing? When my husband came home that night, my SIL also came over for a quick visit. I broke the news to them very offhandedly ... I think on the surface, I still wasn't too concerned, although my mood had settled into a deep and quiet melancholy. After all the children were in bed that night, the three of us were in the lounge room just talking. My hubby and his sister began talking about what the nurse had said. My SIL worked in an autism specific school, and had been there for quite some time before our little man was even born. Coincidence? Providence? I don't know. They discussed my son's symptoms and compared him with other autistic children. It was just a discussion, something to be fully expected when information like this is presented to you about your child. Discussion happens, and must happen if we are to remain in a healthy emotional state.
I sat quietly, listening, but not participating. Inside, my emotions began to roil. I became angry, very angry at what they were saying. They were discussing this as if the boy had already been diagnosed. I was livid. I sat quietly, trying to control my ire. All I wanted to do was slap them both and tell them to shut up. Just shut up! Don't you realise this is my son you are talking about? You're talking like he has autism for sure, but we don't know anything yet!! I was so mad, I felt sick. Fortunately, sensibility dominated my anger, and I didn't say anything. They weren't actually doing anything wrong, it was just the thoughts of the day all beginning to settle in for me. I'd had all day to ponder this, while they had only just been informed. I excused myself and went to my room.
I cried myself to sleep that night. I wept and wept and wept. I felt sick inside. I could not sleep properly all night. Every time I woke up, I would think about it and feel sick. Several times, I went into my sons room, just to stare at him while he slept, weeping, and praying. Please God, please.... this can't be happening. She has to be wrong.... she has to be!
Looking back on that day, I can see how the idea that something was wrong with my son took a bit of time to sink in, but when it did, my perspective of him changed forever. I was grieving. It was horrible not knowing, and just wondering all the time - is this a normal thing or is it an autistic thing? It was traumatic, the way I would swing from; No, he can't have it - look what he's doing? Autistic kids don't do that, do they? to; He's got it for sure... oh dear God, he's got it for sure. It was grief, and the thing that broke my heart the most, was that no matter the outcome, I will never be able to look at my son the same way again. Oh, he was still my son - and he always would be no matter what. But he was no longer the son I thought he was. I lost something that day.... the innocent expectation of a normal life for him, and for us. It was most definitely grief.
I felt gutted, shattered, lost, confused, vulnerable, afraid, angry, depressed. I was a mess.
The next day, my son decided to climb up and sit on the couch. He did this right in front of me. I was over the moon. No! He's fine! He just doesn't do things until he's sure he can do it, then he just up and does it! The nurse rang me that day to see how I was doing and to let me know she had sent a referral off for a paedie appointment. It would be four months before I could get in to see her. I told her about the couch incident, and she was pleased. "Good!", she said, "lets hope he picks up a crayon and starts drawing next!" He didn't.
The next four months were among the most traumatic of my life. Waiting was torture. But I put away my impatience, and resolved to spend more time with my son to build those skills into him that I had obviously failed to do before.
I still cried. Alot. In private. My husband didn't seem perturbed, so I didn't want to burden him with my emotional breakdown. I tried to keep it to myself. In a way, I felt like my life just stood still at that time. But life never does. It went on. And so did I....