An Insight to Life as a Parent Carer

 I am a parent carer for my son who is 8 with SPD and hypermobility, he is also on the pathway for an ASD diagnosis. My husband and stepson both have ASD as well. Being a carer has good days and bad days: some days I try to do all of their favourite things and try to do everything right but will still end up with meltdowns and tantrums no matter what. However, it what it is, it is my daily life. There are times where he will come out and say something like “see you later beautiful chick” and it fills me with happiness. Then other times, I am the worst mother in the world and get thrown insults at me. It’s so up and down. There is no constant, he can flick from one to another so quickly. 

For me, there is no opportunity to relax or have a down day. I am always on high alert, even when they are asleep. I have to know exactly what is going on, I have a lot of emotional and physical stress. I have a lot of fears for the future too, so my mind is always active. Despite this, I do have a lot of hope, especially because of my husband and his ASD, I have watched him accomplish so much. 

As difficult as it can be, it can also be amazing. For instance, my son recently learnt to ride a bike in just a few days.

I am so proud of him, it is something I never thought would happen. However, if I try to tell this story to parents with neurotypical children, they don’t understand and make comments like “my kid did that ages ago”, it does get to me. 

I do feel invisible as a parent carer. What I say doesn’t matter, it is such a fight to get support. It is all about what school says, but things are so different when he gets home.

I wish professionals considered the parents input more. Out and about, something might happen which triggers a meltdown and it is always the older people who tut and make comments. Sometimes, other parents will try to give me tips and it can feel so unhelpful, something that works for your kids, won’t work for mine. I feel so judged, I wish they could see that I am a parent carer. Understanding what carers go through needs to improve drastically if we are ever going to get the respect that we deserve. This issue is even greater for unpaid carers, there is more judgement and less understanding. 

The support from Carers Trust Solihull is so useful, I now know where to go for help. For once, it’s not about everyone else, they are there for me. We as parents do get forgotten about and I have felt like I don’t matter, however I know that they care. Having someone to ask how I am is a huge help, I know that if I am having a bad day, I can contact them for support. 

Being a carer is hard and it’s very emotional but I never want to change them; I want to change society. 

They are who they are, they what they are, why judge that? 

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