Letting go of the guilt! 

Motherhood even with all its joys and heartwarming moments is basically hard work. Never in any job of my working career had I ever felt so stressed, exhausted, mentally and physically drained. Add to that the household management of the numerous loads of washing each day, house cleaning and tidying, garden maintenance, meal cooking, numerous food shopping trips, lunch making, car cleaning and taxi driving its a pretty busy life whether you work in a paying job or not. Special needs child or not.

I sometimes say Isla is a lot less work that my other two but what I actual mean is that she is a different kind of work. I don’t get the emotional drain that my other darling daughters have on me by their sibling arguing, sometimes whining and always wanting. Isla wouldn’t know how to be manipulative or spiteful even if she tried. That in itself is a breath of fresh air.

However with her it’s a little like having a toddler. I have to be constantly alert…she can’t be left alone in the bath, I cannot leave a boiling pan on the stove unsupervised and I have to always be on the lookout for not just seizures but also when she may need to do no2s to avoid an accident where cleanup is never pleasant at her age.

It’s dealing with the tantrums or trying to avoid them at all costs and trying to keep her feeling happy and secure.
But the worse thing I think is the guilt I feel that I’m not doing enough or not doing it right that is most emotionally draining for me when it comes to Isla.

Whether it’s her spending too much time on the computer or iPad. Using it as a babysitter when I’m busy or trying to relax.  I feel bad as in that spare time I should be supervising and encouraging writing, drawing, reading or anything else that might make her development happen quicker.

Sleep deprivation is hard with Isla never hardly sleeping through the night and wondering if she has had enough sleep to not be hideous at school the next day and you’ve had enough just to be able to function the next day. So I allow the lying down with her to go to sleep, allowing her in our bed when she wakes in the night with the hope she’ll go straight back to sleep, having milkies to go to sleep that she should have grown out of at 2 years old and leaving the light on in the hall. I allow it but wonder whether I am creating bad habits.

Then there is the walking on egg shells especially around meal times when I don’t want her to think she can have her own way but also aware that she needs to sit down and eat a meal otherwise won’t sleep properly or will be hungry at school. So sometimes yes I allow the iPad just to get her to sit still and she is allowed mostly to eat with her fingers. You do what works but then I’m afraid we are not teaching proper life skills for independence. This also happens with her self care…she has the “get myself dressed chart” to follow but most mornings its too hard for both of us and I do it all for her as I don’t have the patience.

Guilt, worry and anxiety!

I wonder if other special needs parents carry a lot of guilt also about what we should be doing versus what’s the easiest thing to do.

I am sure all parents can relate to this even with neurotypical children as I also do it with my other girls…are they eating healthy enough? Are they eating too much sugar? Exercising enough? Doing enough homework? Are they doing the right type of after school activities as you’d hate them to not be given the opportunity at something they are good at? Are they doing too many after school activities? What’s the right school for them, private versus public, girls versus boys schools? The list goes on.

I am sure we all beat ourselves up and wonder if we are doing the right thing for our children. But I guess this is what makes us good parents !

Having Isla I am exposed to this guilt a little more often as I feel I am so responsible for her being the best she can be and I have so much more to teach her than my other children just to function in the world. I sometimes feel I am the worst person for this job as I have no patience and although I am very goal driven and proactive I am not overly consistent. However I’m doing my best which is all I can do.

This post originally was going to be about “Looking after Yourself”….what helped me/helps me in difficult times but will now save this for another blog as this has clearly taken on a new direction !!

Now to try to find a way to let go of the guilt and the anxiety and trust everything will be okay.

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

7 thoughts on “Letting go of the guilt! 

  1. This is spot on! I also have 2 neurotypical children and I work outside the home. There are never enough hours in the day and I feel like my 2qte Brendan is constantly being shortchanged. We meet with his teacher today since this school year isn’t going well. I started a new job right before the school year started so I am concerned that I wasn’t as attentive to Brendan as I should have been. Thank you for such a great post!!

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  2. Amazing blog and I can totally 100% relate to everything you have written…
    We have a beautiful little girl who is 5 years old that was diagnosed in January this year with the same 2q23.1 micro-deletion…
    I’m not going to beat around the bush here, this is definitely been the hardest 5 years of my life and nothing, absolutely nothing can prepare you for this.
    Guilt and beating myself up on a daily basis is an understatement.
    Just reassure yourself, you are doing a great job at being the best you can be given the current circumstances.
    Would love to talk again…
    Thanks for being honest about life

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  3. Hi Sara I am so enjoying your beautiful blog and have just dashed off an e-mail to the dance therapy group you mentioned earlier – hoping they will have something in Tauranga. Bridget is now 12 and was only diagnosed with a micro deletion earlier this year – so it has been a long hard slog of knowing that she is different to other children but not sure how or why. And hard as getting the diagnosis was, the incredible guilt of believing she behaves as she does is because I am a terrible mother (and doesn’t this get reinforced by some of those around us!) has been lifted. Yes, I have room for improvement but actually, I think I have done a pretty amazing job on my own up until now.Thank you for your honesty 🙂

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    1. Glad you found it. I’m not sure if they do dancing out of Auckland but hopefully someone will. It found me a while to find other groups but are worth it so they can feel they belong for a little while…

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  4. Hi Sara, I just read a little bit of your blog and I think it’s amazing. The doubt of being good parent belong to the good parents. You do your best and we all can see it. Don’t worry, even the mistakes are part of the growing. Being a parent is the hardest job. It is also a matter of balance, between yourself, your husband, you and the kids and the kids themselves. It always change but if you are too tired or stressed, it doesn’t work. So don’t feel guilty and keep doing your great job. Merry Christmas to you and your family

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