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Hello. Am I in for a world of pain?

AlexBrown

Hello all. 

I just wanted to introduce myself to this forum. I'm an early 30s parent. Me and my wife had our son two years ago. Our first child. Everything was perfect in our lives until we started noticing repetitive behaviour in our child. We noticed this a few weeks ago - hand flapping, constant spinning of car wheels, tip toeing, not responding to his name. He was actually doing this for ages but we had assumed his hand flap was a goodbye wage, for example. 

We have just started to look into diagnosis, such as seeing a paediatric, seeing a dietician. I've been disappointed at the waiting list. Is it just me or is everyone else also feeling the frustration? 

As a first time parent it comes as a shock, almost disbelief and the hard part is in readjusting my expectations for my son. I had all sorts of ideas of what father and son would do. It's so devastating. I started a blog because I had no way of releasing the pain than to write it. www.bestparenticanbe.com

Have you guys found a way to get your son or daughter diagnosed faster? We have been told a 2 year waiting list. My son is 2. Surely there must be something that can be done? Is it worth going private?

Any advice and experiences would be very very much appreciated.

I just want to feel strong about my child's future. It's devastating to think he may not get the same opportunities I did as a child.

Alex.

Parents

  • Hi Alex, I've never had an autistic child but I was one myself although I didn't know at the time. I have experienced the waiting list for myself as the person being diagnosed, and I can fully relate to the frustration although it is probably even harder for you trying to do all of the other parenting stuff whilst waiting for the long process to complete.

    I want to say don't panic or be too despondent about the future for you and your son; autism affects people in so many different ways and your worst fears may not be realised and you will undoubtedly have many cherished moments and unexpected positive experiences too. My own children are not autistic, but that didn't stop them riding rough-shod over *my* ideas about what a parent would do with their children :-).

    As with everything that challenges your expectations, it takes time to adjust and the classic change/grief/adjustment model will apply, so you can expect the usual stages of questioning and frustration and acceptance and readjustment in various guises and orders and strengths.

    Writing a blog is an excellent idea if it works for you - I used one myself as I was coming to the realisation that I'm autistic, and I found that writing stuff down so that it would be comprehensible to someone else forced me to think through it clearly; and that seemed to be the key to the psychological evolution that was necessary.

    Welcome to the forum and hopefully you'll find lots of the support that you need here.

Reply

  • Hi Alex, I've never had an autistic child but I was one myself although I didn't know at the time. I have experienced the waiting list for myself as the person being diagnosed, and I can fully relate to the frustration although it is probably even harder for you trying to do all of the other parenting stuff whilst waiting for the long process to complete.

    I want to say don't panic or be too despondent about the future for you and your son; autism affects people in so many different ways and your worst fears may not be realised and you will undoubtedly have many cherished moments and unexpected positive experiences too. My own children are not autistic, but that didn't stop them riding rough-shod over *my* ideas about what a parent would do with their children :-).

    As with everything that challenges your expectations, it takes time to adjust and the classic change/grief/adjustment model will apply, so you can expect the usual stages of questioning and frustration and acceptance and readjustment in various guises and orders and strengths.

    Writing a blog is an excellent idea if it works for you - I used one myself as I was coming to the realisation that I'm autistic, and I found that writing stuff down so that it would be comprehensible to someone else forced me to think through it clearly; and that seemed to be the key to the psychological evolution that was necessary.

    Welcome to the forum and hopefully you'll find lots of the support that you need here.

Children
  • in reply to I'm done with Christmas Cards

    Thank you so much. I agree - writing about it always helps bring more clarity, and I'm hoping it will help me to understand what to do better. Can I ask, if you don't mind, how was it growing up with autism? I ask this purely because I want to help understand what my son may experience. Were there frustrations? Did you feel people didn't understand you at times? Did you ever feel limited in any aspect of life? Alternatively, maybe you felt liberated with things that others felt limited with? Please do share your experiences. And as life goes on, do things change? I just want to know my child will be ok after I'm gone.