Writing this post has been one of the hardest, as it’s voicing and facing my fears as a parent carer head on. 

Everybody has ups and downs and all parenting seems to be a rollercoaster. For those who are SEN parents the highs and lows are more intense and extreme. Sometimes humanly speaking, they feel overwhelming but it’s still not without hope. 

5 Here are my current five hardest things about being a parent carer. These are not to make you feel sorry for me or our family but rather, I hope they will give more insight into our and others journey. I also hope it will increase understanding, compassion and tolerance of those with ASD and the privileged ones who care for them. So here goes:

Our kids future

We all worry about our children daily but my worries about H include the future; where he will live when he’s older, who will look after him when we are gone and who will pay for it all? No one knows the future apart from God and things may change but it’s highly likely H won’t be independent at the ‘expected age’. We laugh at points about our retirement; dreaming of all inclusive holidays but with H in tow making the most of the buffet!

H has no proper friends

He’s never been out on a playdate, stayed at a party on his own or done many extra curricular things. H has speech and language and developmental delay – it’s hard for him to keep up with his peers. He is currently totally fine with this! He has a glint in his eye as a class mate says hello or excitement over a party invite. Truthfully it’s tougher on me than it is on him as it’s my ideals that are having to change. It’s worth saying he has lots of people who love and care for him and make a special effort. He’s not lonely as he couldn’t manage anymore than he’s currently doing.

Reactions to us in public

H shouts a lot, struggles to wait and makes some funny noises. I have only had a couple of experiences where people have said actually said something horrible but we often get looks, stares or smirks. The worst is when people look at you as though it’s your parenting that’s caused the issue. I long to shout “He’s got Autism and it’s a triumph we are even here!” Let’s all be less quick to judge other people and show kindness wherever possible as we don’t know the situation or circumstances. 

H lying down in public

The impact it has on others

When you see your spouse struggling or your other children sad it’s even harder than when it’s just you. All the wider family and close friends are sharing the highs and lows with you and adjusting their expectations of what they thought life would be like. 

The Fight

You can never take your foot off the pedal or switch off really. You have to do lots of paperwork, phone calls, emails and work on targets at home. It feels a big responsibility and very tiring. Then there’s the task of making sure your other children don’t miss out on time and get to be the focus too as well. It’s a balance that I’ve concluded is impossible to get right!

I could go on but that’s enough to start with! This week I will also write the top 5 best things about being a parent carer of an SEN child as there is lots of them too!

Even though things are tough, exhausting and very repetitive it’s still not without hope. The next blog post will hopefully show you that.

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