Showing posts with label first news of diagnosis. Show all posts
Showing posts with label first news of diagnosis. Show all posts

January 19, 2015

Diagnosis Day



Diagnosis Day


You sat down, the doctor gave the news
In some ways it's such a relief
But inside there's still a part of you
That wants to curl up in grief



"I'm still your baby," she says.
"I'm still the same one you love.
I'm still the same child you hold 
Close to your heart so snug."



Don't worry about anything yesterday
I know this wasn't by choice
Just take each moment day by day
And in small victories rejoice


~Kelly Bron, January 2015

June 23, 2014

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you. 

December 05, 2012

Delivering the Diagnosis News to Daycare

The Little Man has been in full time daycare for almost 6 months now, but even though we had the autism diagnosis before then, we chose not to disclose that info to our daycare educator. It was a choice we didn't take lightly and we decided it was better that she wasn't biased. He is easy-going enough and we figured she would eventually figure it out for herself that he was a little different.

Well, it didn't take long for her to notice his peculiarities, but she was flexible enough to work with him and not against him. She figured out quickly what kind of discipline works and what doesn't, and she is super patient. Sometimes, not knowing you are dealing with a special need's child produces far more creative and efficient results than knowing and giving up. I mean no disrespect when I speak of people giving up - but the fact is, a lot of people (not the parents usually, but others) give up trying to work with a special need's child and don't set the bar very high because they think the child doesn't have potential. If you go in with the attitude that every child has equal potential, you will usually try harder to help each child achieve their best. 

autism diagnosis onequartermama
That feeling you get when you hear the news the very first time.


Last night, I made an appointment with her to chat about the Little Man and finally come clean about his diagnoses. My only regret about this conversation was the way I delivered the news. It doesn't faze me any more to say my child is autistic and apraxic, but I forgot about the feeling you get when you hear the news for the very first time. She cares about him deeply and she got tears in her eyes. I told her a therapist would probably be coming into her home to help him and she said she would do anything to help him. We spoke about the best time of day for him and the number of hours needed. We totally agreed and I am confident despite having only worked with him for 6 months, she knows him very well and loves him like her own. We know we totally lucked out with this daycare worker. She truly is a blessing to our family.