From the day I visited the nurse in May, to the day we finally saw the Paedie in July, life truly was a roller coaster. One moment I was fine, handling things and feeling positive about whatever the future held. The next minute, I'd be in my room weeping and grieving over my son. I just found it so hard to put into words what I was feeling. I felt guilty over being upset. And I was still just shocked that this was happening to us - to my son... in my family. I mean, hadn't we had enough already? One little niece with multiple disabilities, already passed away and her baby brother born with the same terminal prognosis, and another little nephew with Down Syndrome? Now my son too? What is going on here? Has God cursed us? Have we done something terrible to deserve all this?
Look at those two darling faces :)
I know now that this is no curse, but a precious blessing - that we have been sent these amazing children because we have this capacity to support, love and cherish all of them throughout their exceptional lives.
Very tentatively, I began to share a little of my heart with my husband. I had not heard much from him, though I was certain that he was not completely without emotion. He just handles things differently. But I was keen that we take this on together, supporting each other. I really needed his support and was worried that he needed mine but hadn't said anything. As it turned out, he was upset over it, but refused to emotionally commit to anything about it until there was a firm diagnosis. In other words, he would not allow himself to think about it too much at this stage, because to him, there was no point - we knew nothing for sure.
This was SO different to how I was handling it. I had to think about it. All the time. I could not help myself. I needed to be saturated with the whole deal so I could process things. Although it seemed to me that my husband just didn't really care one way or another, in my heart, I knew better. He cared, he just had a different way of working it through. That was ok with me. But I felt that my ability to share with him was limited because of it. He obviously did not want to be talking about it all the time, whereas I needed to. So we talked a little. Mostly at night as we went to bed, or in the car to various appointments for our son.
I would mostly tell him how I felt about things, and ask if he had considered whatever it was I was talking about. I told him where I needed his support. He tried his best, and I appreciated that. But to be honest, it just wasn't enough. Nevertheless, I didn't want to just dump all my emotional mess on him where he was trying to keep his emotions all dormant for the time being. It wasn't fair.
I tried to seek comfort in family and some friends. I had no shame in discussing it. This was my son, and I loved him. And this is just the way things were. People were very sympathetic, but so many times I got responses that just made me shake my head in confusion and disbelief. Some of the common ones:
I really think it's just his hearing.... he has hearing problems. Get his hearing sorted and you'll be fine.
Ahh, we already had his hearing checked - it is the first thing they do.
No, he's fine Viv, just a bit slow that's all. He'll catch up, don't worry.
I hope that is the case, but I really doubt it. There is something more at play here. And wouldn't you worry if it was your son?
Stop worrying, he is fine.
Don't tell me to stop worrying. How can you even expect me to NOT worry? The next person to tell me to stop worrying is going to get a slap!
Oh, I knew a kid who didn't talk till they were 3/4/whatever, and they are fine now.
That's nice for them, but there is more going on here than just a lack of speech.
You know you have to stop immunising him now, don't you?
Er.... why don't you just take this knife right here, and stab me instead? It would be less painful.
You've just spoiled him. You've become a typical Arabic mum who adores her son and will let him get away with murder.
People! Please! Wait patiently for your turn with the knife! There is plenty of me for everyone to shred to pieces.
Ahh, yes. It was not an easy time. By any means. And sometimes the most hurtful comments come from the most unexpected people.
The day finally came for the long awaited paedie visit. In the waiting room, our little man was not interested in the box of toys provided for waiting children to play with. Instead, he kept running to the automatic doors to try and escape. We were finally called in by the Paedie.
On the way into her office, she bent down to address our boy - and very loudly I might add.
"Hello Erik. Hello Erik."
He totally ignores her, more interested in looking around and trying to run away.
"Erik, hello. Can you shut the door please Erik? Erik, shut the door."
Still no response.
I am not embarrassed this time. This time, I am grumpy with the paedie. Isn't it obvious that he isn't going to respond? Stop pestering him, the whole waiting room is staring at us! He isn't going to respond. Leave him be!
We went inside the office and the paedie brought out a box of toys for our boy to play with. He didn't even look twice at it. It was like he didn't notice it. We seated ourselves and began introductions. She started by asking us what concerns we had that led us to see her. The whole time, our son just walked around the room in the same pattern. Occasionally he would walk around our chairs. He would also make this strange sort of honking 'aaahhhh' sound. Over and over. The paedie asked me what that meant. I told her it was a sound he makes when he is happy. He certainly seemed happy enough to be in there, though I had my doubts about the genuineness of it. Looking back now, I think it was more a sound of anxiety than happiness. He was nervous, and that was how he expressed it.
She went on to ask a myriad of questions, fill out a questionnaire, and even conducted some simple tests to observe what our boy would do in certain situations - like showing him certain toys, or blocking a part of the pattern he was walking. After what seemed like forever, she finally shared her thoughts with us.
There was definitely something wrong. She couldn't say specifically what, but she suspected either Autism or Developmental Delays, but she was more inclined towards Autism as a diagnosis - he's definitely on the spectrum somewhere. We had to go for more specific testing to confirm though.
My heart sank and my chest felt tight. I felt sick to my stomach. Hot tears stung my eyes and started rolling down my cheeks. I had known this was a very real possibility. But to hear from a nurse is one thing. To hear from a Paediatrician, is another. I had a feeling inside, that I could only describe as something clicking shut. There is no way out now. No chance it might be something less serious. The last little bit of hope I had was now gone.
She asked me if I was alright. Tears streaming down my face, I laughed and said no. I'm not. I'm not alright. But I will be. I couldn't really say how my husband reacted or what he felt. He keeps his emotions well under control, and I was just swept away with mine.
I have to say, the rest of the afternoon was a blur. I don't remember leaving, or getting in the car, or arriving home. I don't actually remember anything in the short period that followed, so I'm guessing that based on what I know about myself, I fell into a deep depression. I probably carried on as normal - what else could I do? But because I don't remember, I think I must have just been walking around like a brainless zombie. Not all there. Lights on but no one home. In a surreal kind of numbness, where the pain is just there, but I won't touch it for fear it will cripple me completely. I couldn't afford that. I had a family to care for, and another child in my womb to consider. I had to keep it together in so many ways. That was hard. Really, really hard. I wished that someone would just give me permission to fall apart and carry my load while I went to pieces for a while. But nobody did.
One of his favourite things to do was post the tokens into the slots in Connect Four. It still is, and I have to hide the game to save meltdowns. It only comes out at very special times for him now.
The next step was to get some blood tests done and wait to hear when our diagnosis appointment would be. That took months to happen. In the meantime, we set to organising early intervention and speech therapy for our boy, as we were told we didn't need a diagnosis to get started. We were lucky enough to get plugged in to services in a relatively short time. It was good because it allowed us to focus on helping our boy rather than the frustration we felt at having to wait for a formal assessment. Because regardless of what the final diagnosis was, his needs had become obvious, and would remain the same.
At this point, I feel that my journey had begun the slow transition from shock and grief to sadness and acceptance. I still grieved, but having a more solid picture of the situation allowed me to move on from the dizzying confusion of limbo land. My son was somewhere 'on the spectrum'. I had new bearings now, so it was time to strike out on a different path. One that has, so far, turned out to be more colourful than I imagined.
xx
Look at those two darling faces :)
I know now that this is no curse, but a precious blessing - that we have been sent these amazing children because we have this capacity to support, love and cherish all of them throughout their exceptional lives.
Very tentatively, I began to share a little of my heart with my husband. I had not heard much from him, though I was certain that he was not completely without emotion. He just handles things differently. But I was keen that we take this on together, supporting each other. I really needed his support and was worried that he needed mine but hadn't said anything. As it turned out, he was upset over it, but refused to emotionally commit to anything about it until there was a firm diagnosis. In other words, he would not allow himself to think about it too much at this stage, because to him, there was no point - we knew nothing for sure.
This was SO different to how I was handling it. I had to think about it. All the time. I could not help myself. I needed to be saturated with the whole deal so I could process things. Although it seemed to me that my husband just didn't really care one way or another, in my heart, I knew better. He cared, he just had a different way of working it through. That was ok with me. But I felt that my ability to share with him was limited because of it. He obviously did not want to be talking about it all the time, whereas I needed to. So we talked a little. Mostly at night as we went to bed, or in the car to various appointments for our son.
I would mostly tell him how I felt about things, and ask if he had considered whatever it was I was talking about. I told him where I needed his support. He tried his best, and I appreciated that. But to be honest, it just wasn't enough. Nevertheless, I didn't want to just dump all my emotional mess on him where he was trying to keep his emotions all dormant for the time being. It wasn't fair.
I tried to seek comfort in family and some friends. I had no shame in discussing it. This was my son, and I loved him. And this is just the way things were. People were very sympathetic, but so many times I got responses that just made me shake my head in confusion and disbelief. Some of the common ones:
I really think it's just his hearing.... he has hearing problems. Get his hearing sorted and you'll be fine.
Ahh, we already had his hearing checked - it is the first thing they do.
No, he's fine Viv, just a bit slow that's all. He'll catch up, don't worry.
I hope that is the case, but I really doubt it. There is something more at play here. And wouldn't you worry if it was your son?
Stop worrying, he is fine.
Don't tell me to stop worrying. How can you even expect me to NOT worry? The next person to tell me to stop worrying is going to get a slap!
Oh, I knew a kid who didn't talk till they were 3/4/whatever, and they are fine now.
That's nice for them, but there is more going on here than just a lack of speech.
You know you have to stop immunising him now, don't you?
Er.... why don't you just take this knife right here, and stab me instead? It would be less painful.
You've just spoiled him. You've become a typical Arabic mum who adores her son and will let him get away with murder.
People! Please! Wait patiently for your turn with the knife! There is plenty of me for everyone to shred to pieces.
Ahh, yes. It was not an easy time. By any means. And sometimes the most hurtful comments come from the most unexpected people.
I was so quick to snap this picture up, because he never used to look at books! This was so rare, and in fact, I never really saw him do this again. All he was doing though, was staring at the one page he had open.
The day finally came for the long awaited paedie visit. In the waiting room, our little man was not interested in the box of toys provided for waiting children to play with. Instead, he kept running to the automatic doors to try and escape. We were finally called in by the Paedie.
On the way into her office, she bent down to address our boy - and very loudly I might add.
"Hello Erik. Hello Erik."
He totally ignores her, more interested in looking around and trying to run away.
"Erik, hello. Can you shut the door please Erik? Erik, shut the door."
Still no response.
I am not embarrassed this time. This time, I am grumpy with the paedie. Isn't it obvious that he isn't going to respond? Stop pestering him, the whole waiting room is staring at us! He isn't going to respond. Leave him be!
We went inside the office and the paedie brought out a box of toys for our boy to play with. He didn't even look twice at it. It was like he didn't notice it. We seated ourselves and began introductions. She started by asking us what concerns we had that led us to see her. The whole time, our son just walked around the room in the same pattern. Occasionally he would walk around our chairs. He would also make this strange sort of honking 'aaahhhh' sound. Over and over. The paedie asked me what that meant. I told her it was a sound he makes when he is happy. He certainly seemed happy enough to be in there, though I had my doubts about the genuineness of it. Looking back now, I think it was more a sound of anxiety than happiness. He was nervous, and that was how he expressed it.
She went on to ask a myriad of questions, fill out a questionnaire, and even conducted some simple tests to observe what our boy would do in certain situations - like showing him certain toys, or blocking a part of the pattern he was walking. After what seemed like forever, she finally shared her thoughts with us.
There was definitely something wrong. She couldn't say specifically what, but she suspected either Autism or Developmental Delays, but she was more inclined towards Autism as a diagnosis - he's definitely on the spectrum somewhere. We had to go for more specific testing to confirm though.
My heart sank and my chest felt tight. I felt sick to my stomach. Hot tears stung my eyes and started rolling down my cheeks. I had known this was a very real possibility. But to hear from a nurse is one thing. To hear from a Paediatrician, is another. I had a feeling inside, that I could only describe as something clicking shut. There is no way out now. No chance it might be something less serious. The last little bit of hope I had was now gone.
She asked me if I was alright. Tears streaming down my face, I laughed and said no. I'm not. I'm not alright. But I will be. I couldn't really say how my husband reacted or what he felt. He keeps his emotions well under control, and I was just swept away with mine.
I have to say, the rest of the afternoon was a blur. I don't remember leaving, or getting in the car, or arriving home. I don't actually remember anything in the short period that followed, so I'm guessing that based on what I know about myself, I fell into a deep depression. I probably carried on as normal - what else could I do? But because I don't remember, I think I must have just been walking around like a brainless zombie. Not all there. Lights on but no one home. In a surreal kind of numbness, where the pain is just there, but I won't touch it for fear it will cripple me completely. I couldn't afford that. I had a family to care for, and another child in my womb to consider. I had to keep it together in so many ways. That was hard. Really, really hard. I wished that someone would just give me permission to fall apart and carry my load while I went to pieces for a while. But nobody did.
One of his favourite things to do was post the tokens into the slots in Connect Four. It still is, and I have to hide the game to save meltdowns. It only comes out at very special times for him now.
The next step was to get some blood tests done and wait to hear when our diagnosis appointment would be. That took months to happen. In the meantime, we set to organising early intervention and speech therapy for our boy, as we were told we didn't need a diagnosis to get started. We were lucky enough to get plugged in to services in a relatively short time. It was good because it allowed us to focus on helping our boy rather than the frustration we felt at having to wait for a formal assessment. Because regardless of what the final diagnosis was, his needs had become obvious, and would remain the same.
At this point, I feel that my journey had begun the slow transition from shock and grief to sadness and acceptance. I still grieved, but having a more solid picture of the situation allowed me to move on from the dizzying confusion of limbo land. My son was somewhere 'on the spectrum'. I had new bearings now, so it was time to strike out on a different path. One that has, so far, turned out to be more colourful than I imagined.
xx
This was heart-wrenching for me to read, and I imagine it will be for a lot of us. It still startles me when I read someone's story and see pieces of our journey reflected in each. Autism moms have a special sisterhood, no doubt about that. Thanks for sharing such a personal, painful part of your story.
ReplyDeleteThank you so much for reading :). It is really comforting to know that there are other people who understand - really understand - those emotions that whirl around when life throws something like this at you.
ReplyDelete