Telling Joe

I don't usually write quite so personally about my children. I try to keep some distance between them and the World  -even here. But I feel this is an important post. I told Joe about his diagnosis recently and I wanted to share that with you. I don't claim to be an expert or that my approach will work for everyone (anyone!). But I wanted to post this experience and my way of handling it, so maybe those that come after may learn from me; -whether I did well or not!

Every parent of a special needs child eventually asks themself: "Should I tell him (/her) of the diagnosis?" " ...How?"  and "What if...  and then ..."

This is something that had been going back and forth in my mind for some time. I had always planned to tell  Joe that he is on the Autistic Spectrum when he is "ready".  Of course, the trick to that strategy is defining and determining readiness, and then -for us- in picking the right time and the right things to say.  Joe tends to process things in phases. You can tell him something and he will take it in, not say much, and then over the next couple of days or weeks, he will ask questions about it. By the questions he asks, I know he has been thinking deeply about it. It can take Joe weeks or months to become comfortable with a concept.

So recently, I figured Joe was about ready to know the truth about himself.  I reckoned the summer break would be a good time to tell him; a time which would not interfere with school if he took the news badly, and telling him early in the summer  would give him a few months to get used to the idea before starting Middle School in the Fall (can you believe he is starting Middle school already?).

It is funny how opportunity presents itself. The wednesday before school broke for the summer, Himself announced that he would need to be away for the weekend on family business and he could take one child with him if they so chose. Grace so chose, Joe declined.   The kids finished school on Friday morning. After saying our goodbyes, we went home with report cards in hand. I read Joe's report card, which he had been stressing about for months. It was OK. Not great, but OK. He is on grade level for most everything except writing. I sat down with him and we went over it, me telling him I thought he had done a good job, but obviously he needed to work with on his writing, something with which myself  and the teachers would help him.

Joe got upset.  He went up to his room and shut the door.  I followed a few minutes later. He has a loft bed and when upset, he goes into the space underneath it to get away from the world. So I sat on the floor on the other side of the ladder and we talked through the ladder. During the conversation he said a lot of things about being different and he referred to himself as 'ghost':  "I'm a ghost. I'll always be a ghost and there is nothing you can do about it". He has done this once or twice before,  and I didn't (don't) know exactly what he means by it.  I figured it meant he knew he was different in some indefinable way.  I knew then, sitting on the floor that I needed to define it for him. I also realized that the weekend would be the perfect opportunity;  with the teasing, attention hogging  Grace out of the way, we could talk about it openly with time to process, without fear of embarrassment for him.

I told him. "We need to talk. I need to tell you some things about yourself, which I think will help you to understand better. We'll do it tomorrow after Grace and Daddy leave"  I saw his eyes get curious, but he just nodded.  And looked a little more hopeful.

 

I dug through a bunch of baby pictures that night.  Pictures I had put away, because they are painful for me to look at. Because you can see the change in the pictures. There is a definite difference in Joe Before Autism and After Autism.  I have hardly any picture of Joe at 2/3 years old because that's when the Autism was most evident.  I'm sorry now, of course, but I can't un-ring the bell there...  (Unfortunately, my scanner is on the fritz, so I can't post these pictures right now)

The next day, after brunch and cartoons and some of the usually Saturday routine, I sat Joe down with the pictures. 

I told him the whole story.

I told him that when he had been born, he looked like a tiny old man with huge feet. That he had been a happy, curious baby. And that when he was about 19 months, he changed and lost all his words and skills.   I told him that I had taken him to the doctor, and my concerns had been ignored. I told him that I had not given up, and had seen other specialists and sent him to school to help him, had consulted yet *more*  doctors and specialists, had tested his hearing and vision and had taken him to the university for evaluation where finally at 5½, they had told me he was on the Autistic Spectrum.

I told him what I had been told by one specialist when he was about three: to "prepare myself" because my son "may never talk and would probably never read or write or go to a regular school". I told him that most kids who lost skills like that (i.e. had a full scale Autistic regression at that age) never came back to join the world again and that he was unusual for how well he did.  I told him that I had always believed in him -have never believed that one doctor. I told him that I had fought for him and that I always would.

We went back to the report card and looked at it with new eyes. I explained that for him, a kid who had lost roughly three year's worth of skills, to be on grade level for most everything was a terrific achievement. I told him to look at it this way: "In six years of grade school, you have made almost nine years of progress. That's why I am proud of you"

And he glowed.

I knew he had more questions, the main one being the label. I told him what they had told me at the university "he is on the Autistic spectrum (and I explained a little bit what that is), but we are not sure where.  We are calling it Asperger's syndrome (because he is so high-functioning)" of course, he had a giggle that his mom had used "the 'A' word" and I told him "so you're an Aspie"

"I'm an Aspie?"

"Yes." 

He thought about it for a second, decided that was OK and then started with the questions:

"Is this why I get Speech Therapy?"

"Yes"

"Does this explain my stutter?"

"I think so, although there are plenty of kids who are not Aspie, who stutter too"

"What about my synesthesia?"

"Yes. It's connected.  Some Aspies and Auties have synesthesia, but not many. Synesthesia  is still pretty  rare."  (sorry I know this is the first time you guys are hearing about the synesthesia, I had kept it under wraps until now, out of respect for Joe's privacy. I may post the full story another time.   Or I may not)

We talked for a long time and then he floored me. Joe clearly has inherited his opportunistic  mother's sense of timing, because he saw that we were being open and talking about conditions and stuff and so he took the opportunity to ask a question of me:

"Mom, do you have a condition that causes you to pass out?" 

*gulp*

"Why do you ask that, sweetie?  Has there ever been a time you couldn't wake me  (I asked, terrified)?

"No. But I remember that time at the park... Remember?"

Of course I remembered. I had taken them to the park after dinner, had started to feel seizure-auray almost as soon as we got there, and had told the protesting kids to get in the car  after only a few minutes ("But we just got here!").  I had told them then that I "felt dizzy" and needed to go home and they complied. Even though it was several months ago,  Joe had remembered and had waited for the right opportunity to ask me about it (see what I mean when I say he processes stuff?)

I was honest with him.  "Yes. I have a condition that causes me to pass out and take funny turns. I have had it for almost three years. That is the reason why I was in the hospital so much a few years ago. But it is not dangerous and I am not going to die or anything"

Joe nodded.

"I thought so"

 

He thinks a lot, that boy. This is a good thing.

Time will tell what he thinks of all this.

Comments

[Virginia Bennett]

Hi OSM, I'm keeping up with you, bit by bit! I'm so sorry to hear about the seizure at the vets! It just irks me so much that no one can get a handle on this for you, figure out what is causing it and get you some trx for it!! I mean, we put men on the moon, right?

Your story about sharing with Joe is a blessing to read. Of course, you know he's going to talk to Grace, now, don't you? I imagine you are prepared for that talk soon!

God bless you, I miss you...and think about you so often.

love
Virginia

[Rob]

"In six years of grade school, you have made almost nine years of progress. That's why I am proud of you"

Thanks for making me cry at work!!!

[achelois]

I am afraid I cannot remember if I have commented here before or not! I just wanted to say that was a beautifully written post.

[yanub]

You did a great job, OSM. And so did Joe. He has every reason to be proud of himself.

I like how he described himself as a ghost. It seems a good description for someone who wants to fit in but can't materialize the social skills needed. Ghosts almost always are portrayed as frustrated in their attempts to communicate. It's such an interesting metaphor he came up with. Damn, but the boy is clever.

[One Sick Mother]

Virginia,

Thanks for stopping by. I have been keeping up with your blog (OMG!) I owe you an e-mail.

You know, I don't think he will talk to Grace. Or to anyone. Yet. He tends to keep stuff like this to himself and not want to share with many people, at least until he has processed for himself, which will take a long time. It *might* get blurted out if he gets frustrated, mind you, but this is unlikely. He is a pretty deep kid.

Rob,
you big softie! Serves you right for reading blogs at work ;)

Achelois,
I think you have. Thank you for your support.

Yanub,
I had wondered about the 'ghost' thing and you know, that makes perfect sense!

Yes, he has tremendous insight. He floors me on a regular basis.

[Quirky Mom]

Wow, well done. Both you and Joe!

And WOW he reminds me of Apple. She "process things" the exact same way. I knew exactly what you meant when you first said it and then I just nodded along each time you described how he was "processing" something.

[Lisa Moon]

Hi, OSM!

I'm beginning my happy foray into catch-up land and, knowing your prolific writing will take me some time to read through, I thought I'd begin more recently...

I cried, too, reading this! Not because it's sad, but because I'm SO impressed with the love, compassion and amazingly sensitive way you managed to speak to Joe about this!

The timing just seemed so perfect and was clearly what he needed to hear. Obviously your son is incredibly bright - just like his mom! - and has many special gifts to share. :)

Can't wait to read on about the synaesthesia; I've an adult friend who has this who was fairly surprised at my ability to comprehend this and, moreso, that I had even heard of it... and yet again that I don't consider it a deficit, but a gift!

From where I sit, it seems to me our friends on the Spectrum boast many gifts. Looking forward to society at large learning to recognise and harness these immense gifts for the benefit of us all!

Ooooh, I could just give you the biggest hug right now... my arms are stretched, see? Really far!

Once again, I bow to your awesome Momskills. Word.

[Tim Murphy]

This is very moving. I found your blog as I and others were figuring out a scam that you described so perfectly well. Needless to say, we are now well aware of the whole "review and compare" scam methodology. I am a doc and we need to be better armed than with vague "be careful what you read on the web" comments.

But I am glad I stuck around to read more here. I give bad news regularly, and I am raising a daughter with special needs, and the way that you handled this should be in that manual for raising children they always tell you doesn't exist. Thanks, Tim Murphy

[One Sick Mother]

Tim,

Thanks for your interest and your kind words.

The scam thing is quite scary, particularly as the scammers seem to be getting more widespread and sophisticated, and with more people over here losing their jobs and insurance, the market is growing.

Good luck with your daughter. Raising any kid is challenging, but a special needs child brings it's own set of additional challenges.

...not all of them bad! ;)