Me and my girl and boy, raising awareness and acceptance of autism

Letting the guilt out

I’ve decided to join in with a Parental Guilt linky with @mrboosmum to offload a few guilt-trip moments that have been burbling around. It’s something that is ever present with parenting, I wonder if it ever leaves us?

What is guilt?

Here’s a definition:
* the fact of having committed a specified or implied offence or crime:
it is the duty of the prosecution to prove the prisonerโ€™s guilt

*a feeling of having committed wrong or failed in an obligation:
he remembered with sudden guilt the letter from his mother that he had not yet read

I first became a parent just over 19 years ago and whilst I haven’t “committed a specified or implied offence or crime”, I can empathise totally with the “feeling of having committed wrong or failed in an obligation”.

Boy, does that feeling increase when your children are diagnosed with special needs. Even though I believe 100% that my children’s autism is caused by genetics, that doesn’t stop the guilt – after all, they’re MY genetics.

(Looking back I can see definite traits in my father)

But other factors may have played a part too:

I was commuting to London whilst pregnant with T, long days, early starts and I would end up trying to catch up with emails at the weekend, at the same time as planning a wedding (in Jersey) and running a home. I always remember one “gentleman” shoving past me and ramming his briefcase past my visibly pregnant belly. Of course, T was cushioned but it didn’t stop me worrying until the next check-up.

Six days before D was born, I fell up our back steps, landing on my tummy. We rushed to the maternity ward and were monitored. D’s heart rate was very very high and for a while, unless she calmed, there was a very real possibility of an emergency c-section. Could that have affected her brain whilst inside me? Is that why she was diagnosed at the “severe” end whilst T is high-functioning?

Speaking of T, it was not until D was diagnosed and following a greater understanding of the spectrum, that we realised/accepted that T had traits. Had had from a very early age. Some affecting his diet, his routine, his life.

Yet, I “sat on the fence” until last Christmas, not wanting to take it further. Tears of relief when he was diagnosed in April, I thought we’d be told we were imagining it and rubbish parents.

Which leads me onto the most rubbishy-rubbish bit: I couldn’t produce milk for any of my children, don’t know why. I felt a failure, unnatural. It just didn’t happen. My (bigger-chested) sisters were the proverbial milk-machines following their babies so, why not me? Even though I’d done the home-births, I couldn’t face the NCT classes with a changing bag of bottles.

D loved to drink milk and still does occasionally. Plain milk and plain water. She would always ask for a bottle after nursery as they wouldn’t let her use a bottle. She wasn’t diagnosed then, they went by their rules, insisting that she drink from a cup – she didn’t have the control to hold one at that time – and join in with unstructured play.

She couldn’t cope with the mainstream environment, it was too noisy, too busy. She couldn’t tell me at the time how she felt, she does sometimes now. Severe guilt that she went through that but, until she was statemented, we couldn’t get her into a special needs school. The result was a happier child from the very first day.

I try not to dwell in the past or think too far ahead. There’s no point. I look at grandparents pushing their buggies around proudly and wonder if I’ll ever be doing that, will our children grow up and leave home, establish relationships, become independent? I don’t know but I feel guilty for wondering.

I DO know something though…blogging is very therapeutic.

Then I worry that I’m doing it too much/not enough/could be doing more for awareness and acceptance of autism/wishing I’d got further than shortlisting in the BiBs/not liking the (necessary) self-promotion but hoping that every post will help society accept my beautiful daughter and handsome son, who are reliant on me, their Mumma to get the message out there.

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Comments on: "Letting the guilt out" (15)

  1. Parenting and guilt are intrinsically linked. Try not to be too hard on yourself, sounds like you’re doing a great job. Do your kids follow a special diet? I’ve heard eliminating certain things can help with the symptoms and even reverse them. Good luck! xx
    #PoCoLo

    • Thanks for the comment. Luckily my two don’t have gluten issues but they do have very restricted dietary tastes, they’re both healthy, I’m very lucky.

  2. Lovely post. I think guilt is somehow attached to the umbilical cord antenatally!! We all have it for different reasons but you’re so right- your kids need you to be their champion. Blogging is so good for raising awareness and I think raising blogger’s esteem too ๐Ÿ˜‰ if you’re trying to raise awareness it’s not really self promotion I don’t think!

  3. Wow. I am so honoured you shared this on the linky. I’m delighted blogging does for you what it does for me: that is, help me work stuff out and feel better. But it is not a selfish act. Boo isn’t on the spectrum as far as I know, but I also know he’s at high risk amd it’s far too early to say. And I get so much from reading your blog. a sense of community, a better understanding and, ok it’s an overused word but I mean it, inspiration. My best friend’s little girl has just had her diagnosis (high functioning) and another very close friend whose eldest boy is 11 and phenomenally intelligent but crippled by mainstream environments has severe Aspergers. Reading your posts and those of other parents with kids on the spectrum has really helped me get a better handle on their challenges (not so different from my own). You shouldn’t feel guilt. You should feel pride.

  4. This is my first visit to your blog but you are doing a great job raising awareness. Dwelling on the past never helps anyone does it ?

  5. A lovely post. I think guilt comes with the territory as soon as you become a mother, for different reasons for everyone. Writing about special needs brings awareness for its acceptance. ๐Ÿ™‚ It sounds like you are doing brilliantly

  6. You can tell just from reading this how much you care and how hard you fight for your children. No need to feel guilty when all you can do is your best. And your best looks more than enough from where I’m standing. Your children are lucky to have you.

  7. Being a parent is so hard and I believe as a Mummy you always feel an element of doubt no matter what. Thank you so much for sharing your feelings with us. I am guilty about something really minor in comparison – the fact that Grace has a very noticeable birthmark under her nose and I feel I could have done something to prevent it, especially as she is now so concious of it. I think that you have and are doing an excellent job. I’m hoping that the film we made today heightens awareness even more ๐Ÿ™‚ Thank you for linking to PoCoLo xx

    • Thanks V, it was good to get the guilt out, very therapeutic!
      Your G is a lovely little bundle, birthmark or no birthmark and in years to come she’ll be able to disguise it – or not, if she wants it to define her.
      She’ll do great! X

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