I never wanted to be the mum of a child with additional needs (see also – special needs, disabilities). It was never in the plan. When Harry received his second label in life of Autism (after his diagnosis of a cranio facial condition called Goldenhar syndrome) I realised that parenting for me would never be what I had expected and would forever be different from that of my friends. This made me really sad.
Unlike Ariel the mermaid I really didn’t want to be ‘part of that world’ and so I busied myself with the friends I’d always had with my head firmly in the sand. No prizes for guessing that this tactic did not help my mental health. In fact, in surrounding myself with those who had a life as far removed from mine as it could be, I felt even more isolated.
I still don’t really have a physical network of friends with SEND children (special educational needs and disabilities). However, I love the Facebook community which has put its arms around my family and grown with us over the last year and I am part of a few groups online, one in particular which is just brilliant.
I posted in that group this week after a couple of things that had happened made me think…
I got upset on a Facebook live on my page recently and a SEND mum who was watching actually called me via Facebook (our sons attended the same primary school). She said that she just wanted to hug me and that she totally ‘got it’ when I was explaining how I felt. And I knew that she did. I knew that she totally understood the fears, the joys, the anger and resentment, the exhaustion and elation, the pride and the shame of ever being angry I knew that she had a ‘game face’ too for those who simply don’t and can’t ‘get it’ (and that’s not to judge those people, its just a fact that empathy and sympathy are two very different things)
I also recently attended the BAPS (Bloody Awesome Parenting AwardS) which is a celebration of parenting blogs and social media insights into a life that is different to the majority. I loved it! Meeting up with the people I chat with in the groups who genuinely understand the highs and lows of life and finding out that we had other things in common too – like a daft sense of humour and a love of cheese. Years ago, I actively avoided groups where the only common ground was our ‘different’ children and yet there I was, in the thick of such a group and having a truly wonderful night.
Finally, a follower on my Facebook page recently posted this as a comment on one of my posts which sums up some, but not all, the moments that we face as SEND parents.
A special needs parent fell in a hole
Family members – “surely it can’t be as deep as you say?”
Boss- “oh that’s a shame! You can have a day off”
Doctor – “Can you keep a diary about your experiences in the hole?”
Local authority – “We don’t have enough money for a ladder”
Charity – “Here is a form to fill in to apply for a ladder”
Another special needs parent-
“I am getting in there with you
I have been there before
I know how to get out
I won’t let you do it alone”
You are not alone.
I read this and, thinking of the wonderful experiences I’ve had lately with other SEND parents I asked in the Facebook group whether other parents felt the same relief and relaxation of chatting with other parents who just ‘get it’. I wanted to know what their experiences of friendship were in light of their altered lives and got chatting over a brew…
Gemma I don’t have many friends to be honest. I don’t need many either because they really don’t understand at all. My blogging friends just get it. I don’t have to explain myself, I don’t have to go over it, I don’t have to defend myself, they simply understand because we walk the same path.
Becky – I have found the same. There is just such a huge depth of common knowledge and understanding of difficult situations between you that is lacking from “normal” friendships. If that makes sense
Kerry ~ I understand where you’re coming from completely. Other SEND parents never question why we have to keep doors, windows and garden gates locked, they understand that we can’t ‘just get a babysitter’ and go and do things at the drop of a hat, or why we can’t just leave him to ‘eat what there is or go hungry’. They understand why we get so anxious about ‘little’ things. They know about the love and the joy that cuts through the exhaustion and frustration. They never say ‘ooh, I don’t know how you do it, duck’ – because they DO know.
Marc ~ None of my friends ‘got it’ and quickly became ex-friends, I was upset at the time but I moved on. I don’t have many friends now. My best mate I met online and we’ve met up a few times but chat all day every day on WhatsApp. I have friends in here and I’ve met a few others on my travels, those who ‘get it’ keep in touch and stay friends.
I love being around people who I don’t need to explain my children’s behaviour to, and they don’t say they don’t know how I cope and give me sympathy. I love being around people who want to have a laugh, chat about rubbish and just have a good natter really. I don’t have many hobbies and don’t expect people to share them, I’m happy to talk about the kids and the system and always more than happy to help others. I’m happy to talk Autism and stuff but sometimes it’s good to just chat about the weather and life in general.
Angela ~ I agree that SEND parents just get it and I think it is partly due to sharing the similar life path which enables us to be gnuine and unconditional, with a huge dollop of empathy for others
Lizzie ~ Totally. It’s so valuable for loads of reasons. I wrote once about the time some of my school mum friends had coffee next to a neurotypical parenting group. They were talking nappy rash, mastitis and sleep deprivation and we were talking about, that time he stopped breathing for ten minutes, detailed analysis of MRI reports and hospice recommendations. If you drop that into a standard parenting chat you sound like your one-upping the perfectly valid concerns of most mums and you can end up feeling almost guilty for sharing.
Miriam ~ I think it helps that other send parents speak the same language. I tend to speak in abbreviations that so few understand like iep, asd, vcb, Camhs and so on.
The only thing I would say is that a true friend will learn and I have come across some people who are not parents but who have gone the extra mile to learn and understand and support and I would not want those special people to feel upset at me saying only send parents ‘get me’.
In fact, I guess the reason I blog is to try and bridge the gap between parents like us and others in society.
Angela ~ Miriam you’ve reminded me about about some non SEN friends who get it too. All of them though have experienced huge challenges in their lives with either mental ill health, physical illness or have experienced abuse. Those experiences also I feel give you a different perspective from the everyday (and perfectly valid) concerns of most people. When you are around people who have had challenges that you can relate to it no longer feels like a game of top trumps if that makes sense and your voice is heard.
Sheri ~ Sometimes you find yourselves exchanging a nod or smile with a stranger as you just know ‘ they are in the club’
I also find SEND friends share the same humour…. non SEND parents dare not joke about certain things but SEND parents do. Humour is one of the things that gets me through the day and tip toeing people make me on edge. There is just a shared understanding.
Me – I think that’s one of the things I love about sharing our life on the page. I laugh such a lot about our situation that people feel relaxed about asking questions and laughing with us. I know that people can’t fully appreciate our lives (and they don’t pretend to) but it gives me a chance to show that we are as similar as we are different. We all take the mickey out of our own kids as well as worry about them. There are lots of commonalities between parenting SEND children and neurotypical and I hope that people see those as well as the challenges. I think it helps us to form friendships based on us as people and not just SEND parents.
Julie ~ I agree. A huge chunk of my friends are all linked to SEND because they have children with various disabilities, conditions etc. However, 2 of my closest friends are linked for different reasons. One because my daughter and her son are friends. Her son is neurotypical but she has worked 16 years as a SEN teaching assistant. She gets it and is super supportive. My other closest friend is not a parent, he is an Aspie and he gets it and has given us endless support, patience and understanding as well as sharing a similar sarcastic tainted sense of humour that Eliza and I both have haha.
Lisa ~ I did a quick Facebook post recently about a couple of stay and plays I go to with my youngest. One is a SEND one and one a regular one. I love them both, the regular one because I get to forget everything and be a regular Mum and not ‘that mum’ and the SEND one because I can let my guard down. Someone literally asked me how I was once and I burst out crying and she just got it. We walk a similar path and it is refreshing to be in their company. I love the balance of both worlds.
Me – I love this Lisa. I avoided stay and play at all costs but looking back I do wish I had tried it. I think you found the balance I never had in being a part of both groups.
Sheri ~ I never got on with stay and plays with my twins… I used to be forced in a corner with my son propped up somewhere as he couldn’t really join in and they didn’t have the right equipment. Then later when my girl twin was walking the stay and play split into non-walkers and walkers on different days… I knew one twin would not be welcome at either.
In the end our SEN group was a god send welcomed both twins wholeheartedly and actually really benefited my daughter in many ways.
Lisa ~ Sheri, I know what you mean. I had to stop going to our regular one when the boy was getting a bit rough and ready with the other kids and the parents patience was wearing thin. I can only go now as he is at school. That’s an odd way to split a group walkers /non walkers! Hooray for the SEN group x
Jenny ~ I liken it to when you have kids for the first time, your non parent friends move in a different direction, so although many remain friends it changes the dynamic. It’s that but x10 with a SEN child. I have some fab ‘other’ friends who give me good balance and listened….I thinks that’s the key, they listened and they tried to get it. That meant the world.
Me – Yes, that’s true too. Some of my very dearest friends aren’t parents of SEND children but they have walked with me through so much of it. They never claim to fully know how I am feeling but they know me as a person, what matters to me, what my hopes and fears are for my boys and they nurture and challenge those like only a seasoned friend can. I love them to bits and they are every bit as precious as the parents who are in a similar place to me.
I asked the question of whether we feel that SEND parents ‘get us’ better than non SEND parents and what I have taken from our conversation is that yes, there is an unspoken understanding between SEND parents. We understand the jargon, the hopes and fears, we know that the ‘little things’ can be really big things in our parallel universe and that humour can be a powerful ally when we need to let off steam. But equally, we need those friends who don’t automatically ‘get it’ but choose to try. The ones who will help when they can, listen when we need them to and cheer us and distract us when we need a break from the weight of our responsibilities.
We need the friends who choose to care regardless of whether they walk the same path as us. Yes, that can make explaining our life so much easier but walking beside us is just as important. The road is long, there is room for everyone who chooses to join us and we are grateful for every person who does.
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