Tuesday, 11 February 2014

The question of Sunny being on the spectrum or not: answered.

I was absent and completely removed from everything with regard to blogging for a long time since a lot has happened over here. Tonight I finally need to take the time to start writing about it all because the heap of things I need to get off my chest is getting bigger and bigger.

Today I will start with Sunny's evaluation for a possible autism spectrum diagnosis which happened during the last two weeks.

The possibility of Sunny having autism has been brought forward by several professionals during the last years, independently of each other. There were some who were quite sure he is on the spectrum. Then there were others who were convinced he did not have autism. The viewpoints were just completely opposed. When we were in Cologne in September 2013 it was mentioned again during our appointment.

This was when we finally decided to have Sunny evaluated for autism. Not that this diagnosis would have changed anything. He is still being fostered in the way that is right for him, regardless of an autism diagnosis. But still, we wanted to know.

So we had two appointments at a facility we had already had two long stationary stays at in the past years. This is why the staff there knew him quite well and they had extensive documentation and evaluations which was a major benefit for the evaluation process; it made it shorter than it would have been at another place.

The first appointment took place together with Sunny. He had to fulfil several tasks and exersises and the way he solved them (or how he did not solve them) was evaluated. I was handed over a questionnaire for his teacher and she was asked to call the psychologist in order to speak about his behaviour at school. The second appointment was today. This time only I had to come since the psychologist wanted to know a lot of things about Sunny's behaviour, so we had time to talk about this in a quiet atmosphere without interruptions.

To make a long story short: Sunny is not on the spectrum. It was evaluated that he does have certain autistic behaviours but that they rather stem from his developmental disorder and not from an autism diagnosis. She explained that this behaviour is more of a side effect.

It was also stated that the gap in this development has widened again. He does make continuous progress but not fast enough. That was like a heavy kick in the guts. It is so difficult for me to look at him with objective eyes and when the hard, cold truths are being spoken they hit me, time and time again. I wonder if this will ever change.

I think I have never left this facility in a good mood. Every time I leave for the one hour drive home it feels as if my car is too small to contain all the thoughts, the emotions, the pain, sadness, frustration, fear, and heaviness I take with me when I leave. It feels as if the roof of my car is about to be blown off from all the negativity that surrounds me and that I so desperately want to get out. My heart is always heavy on the way home because we always leave with another painful reminder that nothing is normal and that there is a lot to worry about.

However, the long way home is always cathartic and I am glad for that. I never arrive at home as sad as I leave. The more kilometres there are between the facility and my car the more I am able to see through the negative fog. To calm down. To block out certain things. Maybe this is not the best way to deal with it. But in these moments I am just glad that I can feel a bit better again.

Last year we were accompanied by a rainbow for a very long time on our drive home. And through the tears that I cried behind the steering wheel that rainbow gave me a feeling of hope and soothing.



10 comments:

  1. Glad to see you back, Joy! I'm glad autism was ruled out for sunny, at least one little piece of clarity in that regard. I bet that you are frustrated about the results, but that doesn't diminish the immense work and dedication you put forth for Sunny every single day. He might have a little slump right now, but I'm sure he'll make progress in his own time. Hugs to you!!

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    1. Thank you so much, Stephanie! xo

      So good to see you comment!

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  2. I don't think there is one "right way" to deal with the emotions and worry of parenting. And comparisons can just be painful. I hope you find a huge rainbow soon! :-)

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    1. Thank you Kristi and yeah, you are probably right! I will be looking for that rainbow for sure! Right now I need it more than ever...

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  3. On the upside Sunny doesn't have autism so that is good news! Second upside they have clearly stated his developmental delays are widening which means they will have to work harder at closing that gap. It also gives you a standard at where he is and where he might be. Will it take him longer? Maybe. But you now have marching orders: you will keep loving and providing for him REGARDLESS Of what the testing says. You believe in your son, Joy. And that is all he needs.
    Hugs

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    1. Thank Kerri! This is what I do: believe in him, I always will.

      However, I think it will not be possible to close the gap but I am afraid it will probably widen as the years pass by and that is what makes me so sad :-(

      Hugs to you, too!! xoxo

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  4. So happy to have you back again, especially to read this! Despite those lingering heavy feelings about not being "normal," it must feel incredible to have an answer and a good one! Sending hugs.... <3

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    1. Thank you so much for the hugs and your lovely comment, Kerith! I love that you follow my blog! xoxo

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  5. talk about a "been there, done that" moment! we had a very similar experience with patty a couple years ago. i was so relieved to have the autism diagnosis off the table, well, i was elated. then, on the drive home reality set in and i had to figure out what we do without an autism diagnosis. and, the easy answer is you just "do". find the things that work for you and sonny and keep on doing them. i thinks it's a new learning experience everyday. that's a good thing, right? thanks for sharing!

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    1. Thanks Misty, yes, you are so right, we just always do. xo

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