Be your best you. It works for everyone.

Life as a parent of a child with special needs is hard. Life as a parent with any child is hard. Life is always harder for our children. That is worth remembering.

Once you get used to being ‘that parent’ everything looks and feels a little bit different. A pressure pot simmering nicely but ready to boil over at any given moment!!

The difference between having a NT (neuro-typical) child and one with ASD is that you can usually tell when you or your NT child are reaching that boiling point. The signals aren’t quite so clear for a child with autism. They can come a second after he’s been laughing his head off, to screaming so loud down my ears they actually ring!!

I start to look at life through a different lens (sure that’s the name of an album 🤔) Parent a different way. We have to adapt or die as I think they say in the wild! God I am full of the banal platitudes today!!

Social media is a bit like that for me. I view the lives of others through that lens. If I’m good & see happy people, I’m ‘yay’ good for them! If I’ve had a shitter & see the same happiness then they can do one. Switch the phone off Jo. My negative mood can make me feel very negative towards others. Perfect parenting and perfect kids are a myth I know. But these snapshots tell me something different.

For me social media can be a place to get advice from others in the same boat. It is also a place to see what you and your kids are not doing well. We all censor our social media lives. Post a happy picture of a perfect 2.4 family when only minutes before the parents might have been having the mother of all rows. Or see couples out for a romantic meal where maybe just before mum was crying because she didn’t want to leave the baby with a sitter. What I’m getting at is perception. Mine. It’s skewed.

Ask an autism mum ‘how you doin?’ The answer will nearly always be ‘fine thanks’ followed by much talk about what our child is up to. If you happen to catch us at actual breaking point for that day or week then you will most probably hear that we can’t cope. We are more tired than we thought a human being could feel while still functioning. We are failing our other children, partners or spouses. We cry A LOT!

On social media however I’ll post about an achievement made by Sam. Invariably I’ll be praised for what a good job I’m doing. What a good mum I am, and my post/photo will get lots of likes. I bask in that for a while because while people are taking notice I don’t feel quite so alone in this world. This is another skewed perception; of my own making this time. I’m not alone. I have a husband who lets me sleep and wakes me with a roast dinner. I have friends who are there when I need them even though I have very little time or energy to be as good a friend in return. I have a good network of people who work with Sam. I am not alone. I can ask for help I tell myself. I usually don’t. I think being any parent means you think have to get it right all the time. No matter that you know in your head that you don’t or that you won’t.

Having a child with additional need doesn’t change my parental physiology.

Once that baby arrives instinct is programmed to tell you not to fail. Make them better than you yourself. Having Sammy, I have to fight against that programming all the time. Learn a new way of doing things whilst juggling a ‘normal’ life. That is a hard thing to do when that programming is telling us our child needs to be…this, that or the other!

I have one fellow autism mum friend. I don’t reach out to people or make friends easily but while doing a speech therapy course for Sam I met her and decided to reach out.

I am so glad I did. Her son and Sam are very different. I’d say she has it much harder than me. Sam is undersensitive so not much sets him off, he’s very clingy but we’ve sussed things so that his meltdowns can be avoided or are few and far between. They certainly don’t last 40+ minutes anymore. Sam is just full on energy. He never stops running, jumping and twirling!

My friend has a boy the same age as Sam but also a 2 year old girl to look after. Cue a much harder time than me. We travel parallel to each other but our journeys aren’t the same. We do understand each other though and we don’t need to censor anything. I cherish this friendship and though we talk more than we see. I can see us being friends for a very long time.

I’m generally a pretty zen person (lazy really!) and I’m at a point with Sam where I know he is ok. He’s happy, warm and well looked after. I know this deep down yet I still can’t stop myself being ‘that parent’ again. And where my friends son is more than looked after with a seriously more pro active mum than me. Mum struggles a lot more than I am now. Add that 2 year old to the mix you can imagine the stress levels. I can anyway. And because I can I just want to say to her, keep doing what you’re doing. You are an amazing mum. Take breaks as often as you can. Leave the kids with dad as often as you can. Breathe and allow yourself some time for you. It’s imperative to survive and thrive at the job you have been given.

I am so lucky that my husband sees when I’m breaking, he knows now. We say men don’t have much of a sixth sense when it comes to this stuff but Stu has developed one and I thank god he has. It makes life easier for me. He doesn’t resent making my life easier he knows my life is hard enough. He knows it. He’s done his fair share. He knows that one bad hour can feel like 3. He sees that being out at work 40 hours a week is the easier deal.His words, he told me. His tired at the end of the day is from being out working. Ours and every stay at home parent is physical and mental exhaustion.

 What I need to keep remembering; Stu is a parent too. Which means he’s pretty good. I can go away for an hour or out to the pub without worry. He might have a shit night because he’s dealing instead of me but he won’t begrudge me it. He knows letting my hair down helps me get through to the next round!!

I finally just want to tell you and all my friends; you are a super parent. Non better. you are doing it the best and only way you know how. Get some of yourself back now and the rest will fall into place a little bit easier.

I love my children more than I love myself but I’ve grown enough to know that I need to love myself too.

Come to me whenever you need to. Well get through it as the actual badasses we are together xxxxx<<<<

One thought on “Be your best you. It works for everyone.

  1. Pingback: An open post to all who love – talesofanautisticchildsnotsosupermum

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