Wednesday, June 29, 2016


Sometimes I feel like I'm going to drown in the Autism diagnosis when the pressure of -this-isn't-how-it-was-meant-to-be threatens to cave my chest in.

Tonight my daughter's classmates and family gathered at the school for what is always an emotional celebration and goodbye as they leave the school. Connie makes one of her amazing cakes.

My daughter isn't in the line up, of course, having opted out altogether nearly 2 years ago now.

It's not about me, but it's so hard to fight the feelings about it. The memories of how great things were when she started school, how bright, confident, involved she was. The slow souring, the lack of help and support, negative teachers who actively blocked her diagnosis for two years, neglectful principal who let it all happen because she didn't want the confrontation of saying something to me. Untrained, gap-filling staff, and the one expert there who got cancer and was in and out, in and out. Not her fault, but still a blow to our journey.

Oh, but what you wish for your children... and instead there is limbo and guilt and fear and frustration. I saw a study the other day that suggested maternal obesity contributes to Autism. I certainly know a lot of overweight Spectrum mothers... she asked me once, in the midst of misery and rage, as we were driving, WHY DID YOU GIVE BIRTH TO SOMEONE LIKE ME?? What if that's why? Can you imagine? I didn't read it, I can't face that information right now.

This should be an ending and a new beginning, and instead it's a nothing. A heartbreak and an uncertainty.I am so sorry for myself. I am so sad. I don't want to lean on the women I don't know who are on the Out of Schoolers page we set up. I've already expressed how hard it is there. They know. There's not much else to say. There's not much comfort to be had. I am so sad. This is just, what there is.


Jennifer said...

This situation is NOT YOUR FAULT. There are half-baked surveys that suggest all sorts of things. Most of them aren't worth shit. If maternal obesity caused Autism then half the kids in this part of the world would be Autistic. I think it's something that just happens sometimes. Bad luck, that's all.

There should be some alternative way for Olivia to celebrate milestones. It's not fair to her or to you that the other kids and families get to have a party when you all have to struggle so much harder to meet those milestone . I'm so sorry. If I lived close by I would bake you all a cake and bring Olivia a present. And you, too. Goodness knows you both deserve it. I send you virtual hugs and my very best wishes instead.


Sabine said...

I think the authors who published that study (link here: were quoted way out of proportion by a hasty media. Their conclusion is shemafully vague and means absolutely nothing in scientific terms: "Results suggest that extremes in maternal BMI may be associated with modest increases in the risk for ASD among offspring."

I suppose if someone started to look into a link between maternal hair colour or parental house size or past family holiday destinations and autism, they could also "suggest" an "association" any which way.

The thing about these studies is that someone needs to repeat it in a different setting and either confirm or refute it and this is impossible.

Don't go down that road. Just don't. These researchers need a good talking to. I would question their motives.

Jo said...

Thanks for that Sabine, I appreciate it.

Jennifer, honestly, I think she's just as happy to have nothing to do with it. So much about this is not fair, the kids leaving school having a graduation ceremony doesn't even figure! What are they meant to do, not do it because my daughter refused to attend school? Loads of them have had their tough times too. Sometimes there's just no good answer.