Deflated. Defeated. Down.
It’s been a while. My radio silence is a reflection of how little to zero “me time” I get. I have all these stories and thoughts I’d love to get written down and share. But, I just don’t get time to stop. Or when I do it’s about mentally winding down and coming to my own baseline calm internally.
We were pretty excited to celebrate Poppy Trev’s 60th birthday yesterday. Excited to feel a little bit normal for once. Lunch at a beautiful place and to see friends who we haven’t seen in a while.
We don’t get out much because we have to go out for so many appointments for the kids. They get so tired and that’s all we can muster is the absolutely must do things.
Actually when we took Heath to the shop after an appointment last week I realised it’s the first time he’s been inside a grocery shop this year.
I don’t expect to have quality time with others when I have young kids.
But the meltdowns that happened during our lunch our for Poppy Trev from mister two was overwhelming for us all. But most importantly showed me that he wasn’t coping and he needed to leave. So we packed up and left.
Miss two bawled her eyes at leaving too which resulted in her wailing and screaming for about 45 minutes. She had also entered her next phase prior to this of being at her end – when she gets this adorable, yet slightly concerning laugh as she tries to antagonize and upset (eg hurt) those around her.
And I know we are doing what’s best for all of our children. I wouldn’t change my kids for the world. I love and appreciate their beautiful autistic qualities. I’m not looking for any sympathy because I adore my kids and there’s simply no room for that stuff here.
I am feeling defeated.
Just one lunch out.
In a country location.
Yet it was still too much.
As I sat in the car after packing the kids up and getting them into the car and calmed down, I struggled to hold back the tears.
I just wanted to be, dare I say it, normal, for two hours. Myself included. Probably talking more about me really.
Living outside of myself and masking, aka acting so incredibly well for 38 years. Yeah it’s exhausting. I have amazing qualities that I’m finally starting to realise, learn and accept in new light, to love and appreciate; however it’s still a struggle for me. Anything social is so exhausting anyway but now added to is 3 (quite possibly 4) autistic children with varying needs.
I wish for just one lunch I could feel normal.
(Note I’m not saying I want to change any of us; I just wish we could *feel* like we fit in with the rest of the world – inclusivity.)
And for my children to feel relaxed.
To participate like our neurotypical peers and families get to.
I feel bad that I let my children down. That mister two felt so overwhelmed that he had such a meltdown. That miss two felt so sad she wailed. But I’m not perfect and can’t be everything to everyone. I only have two hands and a half-working body.
Autism. It’s not something that can be switched on or off. It is who someone is. It is their identity. Because it is how they think. And how we think is who we are.
When people have said things in the past like, “oh wow what’s up with ____ today.” (I’ve heard this more times than I can count over the five years parenting number one and then the following three.) I just want to reply, “it’s not today but everyday. It’s every second of every waking and sleeping moment. It’s this struggle that anyone who is neurodivergent has on a daily basis to fit into a neurotypical world.” It’s all throughout the night too. The lack of sleep is so common in autistic individuals especially those coupled with ADHD too.
Before we went yesterday, I had already downloaded the menu, picked out what would most likely work for each person and whatever changes we’d need to make.
Does a neurotypical person do this? I’m not sure but this is usually the first thing I do when we are going anywhere is look ahead and see what could work and any contingency plans. Because this is so needed. I can’t take in the menu in a busy and crowded place while trying to protect my children.
The kids weren’t coping inside so I’d taken them outside. Then mister two ran off. Mister 5 tried his best to contain him. Eventually I admitted defeat and asked Scott to come help me. And when miser two ran off again and collided with others, that’s when I just knew things were going from bad to worse and it was time. Time to leave. Time to admit defeat and go home.
As we drove home, I couldn’t hold back the tears, although I managed to let them fall without anyone noticing.
We went home and put the kids to bed. They were so tired.
We played after they woke up and tried to reset everyone.
Lots of hugs and cuddles.
And then eventually bed time through their screaming and hitting again.
The struggle is real.
We are their safe place.
If an autistic child doesn’t behave at their most relaxed (aka also their worst) in front of you when they are with you – they aren’t as comfortable yet with you and they are still masking. Take the meltdown as a sign that they finally trust you.
(I want to add here that with covid many people might mistake this for physically wearing a mask, those compulsory ones everyone had to wear. I’m talking about autistic masking where the person basically acts or holds it together in front of others, tried to blend it, and then usually has a meltdown when they are in their safe space.)
Think about a time you had to mask. Perhaps someone close to you passed away (be it a human or animal companion). Remember that pain you felt inside? Remember coping on the outside. But when that one person who asked how you really are, and that one person is the one you felt safe with, and you collapsed in a crying ball with them?
That is how it is when the mask is taken off and the autistic child can let go of how they have been feeling.
Anyway, this morning I thought let’s try church. Prior to kids we used to attend regularly. Since having four kids someone is always sick. So today I thought let’s just try.
We took the headphones. We told the kids about the playground they could play in after church.
But we didn’t make it that far.
The twins lost it near the end (even being in the Children’s room with the toys, able to play and talk). Scott made an exit with Justin. I stayed with the other three in the kids room. I couldn’t even leave them to go get a tissue for a running nose because Lorelai’s screaming and wailing as I tried to do so.
As the last song began to play, my heart longed to sing along with the kids but my body did the best I could to exit with the three kids.
I sent Scott back to take Jeremiah for a quick play because he had done his absolute best to behave in a socially acceptable way – knowing the playground would be at the end. He asked many times about it. So it was something he needed.
I stayed in the car with the younger three and fought back my own tears.
This gig is hard.
That’s not a complaint by the way. I begged God for these children. They are the best blessings I’ve ever been given. That doesn’t change the fact that this is hard.
Yes all kids are challenging. Often people say this. I’m not sure why. Because telling that to a mum of children with significant additional needs is like saying to someone unable to walk (like when my Nanna could no longer walk) “everyone finds it a bit hard to walk at some point.” Um, what is your point? Apples and oranges much? Ableism much? The aim is probably to help the mum feel less upset but it does the opposite. It makes us feel like our situation isn’t as overwhelming as it actually is and that we are the ones that cannot handle things well.
On a side note. I’ve watched four adults try to look after my children and still need my help when we tried to access some respite a while ago. I was then looking after four children and four adults. Totally respite for me, not. So we haven’t tried that again.
Everyone says motherhood can be lonely. Isolating. You lose friends. Blah blah blah. It is all of that. Maybe one of my pre-kids friends still check in on me/keeps in touch, as I do with her too. I’ve stopped pouring my time into friends who aren’t there for me and who never were there for me through all of this.
So motherhood is all of that, but it’s heartbreaking too as we grieve the friends that we stood by though everything, but as our lives became complicated with our beautiful children and their needs, those friends became the painful radio silence that burned the ringing in my ears.
I see them out and about with other pre-kids friends. They have families now too. Their kids hang out. They hang out. We aren’t invited. They don’t visit. We are too complicated for them. That’s okay. I’ll take my kids any day. They have brought me more joy and purpose than absolutely anything or anyone ever has. My family is my absolute joy and remind me of the fingerprints of God daily.
I know this is a common theme with mums of children who have additional needs. I read it in our online groups all the time. A few years ago I never thought that would be me. But it is.
While I’m trying to hold back the tears in the car after church or after the lunch out, my heart cries for the fact that there’s simply no one to talk to anymore about this.
Perhaps it wouldn’t feel so overwhelming if there was someone. That friend who could laugh about it with you and giggle until they pee themselves as I tell them about how the other night during bath time Heath pulled out (yes with his hands!!!) a massive and long poo from his bum under the milky water and I belly laughed and removed the kids so fast from the water and as the water disappeared down the drain so did that massive poo. I have no idea how but it went out too. I laughed so hard.
If you’ve read this far, please be the person in the restaurant or at church who smiles and says “they’re fine, they are a blessing” so that mums like me don’t have the added pressure or weight of judgment to contend with about how we might impact everyone around us. Be that person who packs up our meal for us so we can exit faster. Or that person who comes over to offer their hand to walk the kids to the car with me. Or that person that reaches out to the partner. Guys need other guys too. Be the fellow dad that calls Scott and says “hey let’s hang out at the park together and grab a coffee, bring the kids, they are welcome too.”
And when I talk about doing that for me, or us, I don’t actually mean me (let’s face it I probably won’t be out for leisurely reasons in public with my gorgeous kids anytime soon). I’m talking about any parent with their kids. Just using us as an example.
Let’s build parents up and normalise and ACCEPT neurodiversity. Let’s create quiet spaces for neurodivergent children to access and to feel included (see my point below about even the Children’s hospital of all places). Let’s reach out to each other warts and all and include each other. Let’s send that text that says “how are you going? I’m struggling so much with this parenting gig. You too?” Be real. Let’s show each other the highlight reels but let’s also show these reels of reality (much like I am now).
I want to add a little side note too. For many years we’ve been told the correct terminology is “person with autism” or “person has autism” and I’ve been guilty of using this previously, thinking I was being respectful. I have learned over the years that a person doesn’t have autism, much like having an item with you. It is within them, they are autistic. They are also not with autism, much like being with a friend. They are autistic. It is how they think. It is who they are. How their brain works and reacts to this world. There is so much more to a person than a label, yes, however the terminology that is widely accepted by autism adults is exactly that, autistic.
On another side note, over the past three weeks these kids have attended so many hospital and medical appointments. And we actually reduced/cancelled quite a few for their sake. Even the Children’s hospital isn’t kid friends. There isn’t a space where they can just be allowed to let loose and be kids. Run hop touch things. Whatever. It’s the constant stress on the parents to redirect the children and don’t touch that or this or whatever. These kids, much like many other autistic kids, have been expected to hold it together through so many appointments. So many long drives. So much change which is in itself anxiety stacking. It’s exhausting and then that’s why some of the meltdowns occur when out. It’s all that trigger stacking. I’ve been trying my best to parent using the brain-body parenting approach and it works, but it doesn’t look like the traditional parenting approaches. I’m still learning and refining my skills.
If you haven’t heard about brain-body parenting here’s a little blurb (I didn’t write this):
In Brain-Body Parenting, Dr. Delahooke offers a fresh approach to childrearing that focuses on a child’s unique perceptions of the world through their unique body and brain. Drawing on her extensive clinical experience and the latest neuroscience research, she shifts the focus from solving troublesome behavioral challenges to understanding the factors underlying that behavior. Instead of a “top-down” approach focusing on the brain, she calls for a “bottom-up” approach that considers the essential role of the entire nervous system, which produces children’s feelings and behaviors.
Dr. Delahooke offers parents tools to help their children develop self-regulation skills and encourages parental self-care, which is crucial for parents to have the capacity to provide the essential “co-regulation” children need. When parents shift from trying to secure compliance to supporting connection and balance in the body and mind, they unlock a deeper understanding of their child, encouraging calmer behavior, more harmonious family dynamics, and increased resilience.