Dealing with the guilt?

[Calally]

Paed referred us for genetic testing about 2 years ago, before asd diagnosis, as learning difficulties are common in my family. Had a review today, and ds has a duplicated chromosome which has been proven to coz his learning difficulties, asd, behaviours, lack of attention etc. it's an inherited defect, and he's inherited it from me, his dear mother. They also don't know of anyone else with the same defect as yet. Every time I look at him n think about him, the guilt is killing me. Part of me wishes I'd never found out :(

Hi Calally

So sorry to hear you're feeling so rotten. My DD also has a chromosome duplication although in her case she's the first to have it and so I'm not in the same position re the guilt - altho I feel plenty about not doing enough to help her develop to her full potential .

I can't think of any wise words but if you haven't already found it Unique may be a good source of support for you. They also have a Facebook group. You may be able to connect with other parents there in your same situation.

Good luck.

Calally, I have no wise words. DS has ASD some of which I attribute to me and some to his father.....I think guilt is unavoidable.
Hugs.

Thanks for your kind words. I heard about unique, didn't know they had a Facebook page, I'll have a look.

Wow well put zzzzz.

well said zzzzz. brilliantly put and so very true.

Well I think Zzzz explained it perfectly :)

She is so right on this it's not your fault x

I had surgery while pregnant with DS2, as well as taking post-surgical meds that you are not supposed to take while pregnant. Obviously, I didn't know I was pregnant at the time, and it was not surgery I could avoid - I had to have my appendix out (within a couple hours of going in to see the GP for abdominal pain). They did a urine test to see if I was pregnant, but it was negative. It wasn't until after I had the surgery and the course of meds afterwards that I found out I had been pregnant the whole time.

When we were talking to the paed, I asked about this, as I was worried that this might have been a contributing factor (and felt guilty), but she said quite clearly "you will never know - don't beat yourself up over it. Your pregnancy could have been completely different with exactly the same outcome." I have to say that after much thinking about it, she's right. I can't stress over it. For us at that point, we already had DS3 and were not planning on having any more children. Agonising over it only takes much needed energy away from other things in my life.

That's not to dismiss your concerns, but simply asking you to take time to think about WHY you are going over it in your head. If you are debating having more children and it may affect your decision, then yes, I can see where it's relevant. But other than that, does it really affect how you deal with him? how you care for him? His needs haven't changed since you found out about this. It's only an explanation - don't let it carry more weight than it should in your lives.