Failure

Today was a hard day. I felt like a complete failure of a mother to my kids. Maybe I was a complete failure. It was meant to be a mummy daycare day for Jeremiah, but the twins were so needy that I didn’t give him much time. I wanted to, but the babies were crying, screaming and frantic most of the day. I kept my calm, but I wanted to join them. My heart broke for my boy who was waiting for his mummy time.

My boy 💕

Today broke me… I cried. I couldn’t fix things. I realised I am one person and I can’t be everything to everyone. Well, I’ve always known this fact, but today it was blatantly obvious.

The day started so well. After a terrible night, Lorelai had been up crying until past 9.30pm. She just wouldn’t sleep. I eventually got her to sleep, and then got some of my work done. Finally crawling into bed just past midnight. Longing for a good sleep, but up every hour or so to do that pregnancy pee. And Then Jeremiah woke at the fresh time of 5.15am and was ready for the day. Out of desperation he watched my phone, playing kids YouTube videos.

We all eventually got up and got ready for the day/for work, and the twins slept until 9.30. That has never, ever happened before. They are usually up bright and early. I wish I had found a way to have some solo Jeremiah time before they woke up, but I was feeding the dogs, getting things sorted for the day, getting him breakfast, getting dressed etc and then as we were sitting down together to build and play trains, the twins woke up. Because they both slept so long, they had very full nappies and both had pooed. Justin had soaked through, and the bed was wet. He needed a shower and so did Lorelai. Not complaining, I expected this after such a long sleep, however, it meant that the morning was full blast from 9.30am. Non-stop. Full on. Pulled in three directions at once. While dealing with one child (changing, washing etc), then having two others who are desperate for my attention – one being a twin baby that would be crying, and one being Jeremiah who kept saying “Mum, play with me.”

Twin parenting is so different to having a singleton. With one baby, I could sit and play with Jeremiah while entertaining one baby. I can’t do that with two clingy babies, both demanding my attention, pushing each other off of my lap to try claim sole ownership of their mother. Yes, they literally both do this. Don’t be fooled by Lorelai’s adorable and innocent looking face. She pushes Justin hard and kicks him to get off of my lap so I can be only hers. He then does the same back to her. We would make a really great reality TV show sometimes (maybe we could make a living that way hahaha – just kidding). I think about this concept and imagine viewers laughing that belly laugh at us and saying, “no! no way! It can’t possibly get any wor—- what?! It got worse!” and laughing so hard.

And then there’s Jeremiah. “Mum, play with me” still rings out in my ears. My heart aches. I want to, my love, but I also have to adult. I have to clean the babies, wash them, dry them, dress them, get the babies breakfast. They are not more important than you, but they also have needs that I have to meet. And I haven’t had breakfast yet myself, but that’s not your problem, Jeremiah.

The day went from great to bad to worse. The twins got clingier, they hurt themselves as they do, they needed me. Jeremiah tried so hard to play and interact with them. And the more he tried to play, the more it became even more obvious to me that my beautiful, sensitive, neurodiverse child does not understand how to interact with the babies, and I don’t know if he ever will. We have tried so hard to teach him. His idea of interaction with them means that I have to supervise so closely that everything, I mean everything else has to wait. I cannot leave them alone for a 1 minute pee break, or to go get food for the babies or him. I need to have such close supervision, because the interactions are not always safe. What he thinks is play, is often upsetting to Lorelai who cannot see well, or to Justin who plays rough and tumble. Or what he intends as love, like a beautiful hug, is so tight that it hurts the babies. His intentions are so beautiful and pure, but the actions don’t correlate. It must feel so horrible to constantly be trying to show your love for your siblings and have your mother telling you to let go or to stop holding or touching or squeezing them. (Or worse when others do this who just don’t understand you and reprimand you for simply trying to show love in the only way you know how to do.)

The entire day was micromanaging every interaction possible. At one point I was holding Jeremiah because he had been too rough and needed to be held back, and as I was doing that Lorelai fell off the couch. I couldn’t get to her in time to catch her because I was trying to stop an altercation from my older boy. Failure. Yeah, it sucks. I felt like I sucked. I should have been able to catch her, I was so close, but I was attending to my older boy, trying to protect everyone.

Failure.

This is the side of Autism that many people don’t see. Many even see his loud, full-on behaviour as ‘naughty’ – a word I absolutely hate.

Worse still, many view the child as naughty. And this couldn’t be further from the truth.

My boy is trying so hard to interact with two siblings that he adores. And I am asking him to leave them alone. That must feel pretty horrible. To have your mum asking you to please leave your brother and sister alone when all you want to do is play with them.

Yeah – total failure.

My heart is so broken for my boy. I am teaching him, and trying and it will take time. But it isn’t his fault. I have to find ways to help him understand better.

The babies (I should probably call them toddlers now, but we still refer to them as the babies in our household) didn’t have their morning sleep which is when we would usually have Mummy Daycare time – just him and me time. He gets me all to himself. Not today, it was full on. Until the twins finally went down at 2pm. But then it was time for my boy to have his rest. When he wakes up so early he needs his rest or the remainder of the day goes from bad to worse.

So it was time after a few minutes of play to begin the wind down process for him to have a rest. He finally fell asleep at 2.50pm. I drifted off to sleep beside him. My favourite times are sleeping beside my boy, knowing he’s safe in my arms and everything is okay. And we have that peace, that calmness that we just don’t get during the awake hours. It is bliss, and I can breathe in my precious boy who I prayed for so hard for, for those 7 long years.

At 3pm the twins woke up. So that meant I dozed for about 5 minutes… life of a mum with children especially those with special needs… we learn to sleep during our sneezes and be ready to go again… well almost.

I carefully tiptoed out of the room to go get the twins up. They thought it was hilarious to keep playing on the only remaining chair in their area. I was stuck between two crying babies and two babies crying to climb the couch that they keep falling off. Stuck.

Jeremiah went off to dancing with his dad and again, I was still stuck. Could not leave these two babies alone for a few minutes. They kept hitting each other and making each other cry while the other laughed.

Twins – oh but twins are so cute. It must be so incredible having twins! (Well yes, it is, but it is also so incredibly challenging! Blessed beyond measure, exhausting beyond comprehension, too.)

The afternoon continued much the same way. This rollercoaster derailing faster and faster. I couldn’t stop it. Nothing worked. Yeah, failure.

The bedding I had washed from the night leakage, still sitting in the machine, waiting for me to hang it out. The dinner still sitting from lunchtime waiting to be put away.

Failure. Surely things can only get better from here.

Jeremiah’s behaviour was spiraling.

Dinner time, let’s get these kids fed and to bed as fast as we can.

Finally, the twins were in bed and starting to sleep. Finally, I could pull Jeremiah aside for that time he so desperately wanted, that he needed. His spiralling behaviour was his needs not being met by me. And that broke my heart. His spiralling behaviour is more of a reflection of my inability to micromanage his environment around him perfectly than any reflection of him. I hadn’t set his day up for success. I had tried, but I hadn’t succeeded today. Despite all of my effort.

Finally, we planted some bean seeds together for our experiment, played some learning games together, and then after a while his behaviour became destructive again. His needs were being met. His structure and routine were being followed, albeit at 7.30pm at night rather than during the day. So this contributed to his spiralling again.

And then finally, it was time to lie down together so that he could drift off to sleep with me beside him. I could apologise for failing as his mum today. For not giving him the attention, he so desperately wanted and needed. Where I could whisper in his ear just how much I absolutely love him. Where he could hold on to me so tight, the way he does every night, where his routine is the same and predictable and he can feel safe. And once again he can forgive this mum for not being the mum he needed today.

The washing still isn’t hung up. Failure as a wife too. The food still not put away. The dogs yet to be fed, and given their attention that they need. I’m yet to shower and get ready for work tomorrow, and daycare bags are yet to be prepared. Daycare lunches are yet to be made.

What a day. Yes, we all have them, but today broke my heart a little as I realised a little more that our boy is never going to find things easy. He can’t just interact with others. He has to be explicitly taught. And then taught this over and over again. Given the opportunity to practice. And then the babies have to be the ones to give him this practice which means that they get hurt too.

He has to work so hard to be like everyone else. It doesn’t come naturally. I have to work so hard to protect everyone. And I am drained. Nothing left, and still I must go on and get this stuff done, past midnight again. But instead I pour my heart out here as a release, but also for awareness (people who have no direct interaction on a daily basis with autism don’t see or understand this), and also to be real. To show that I don’t have it all together – ain’t that obvious! I am human. I fail. I hurt, but I will keep trying with every ounce of my being.

I also share this so that my children can see me for me. For all of my flaws. One day I want them to know that I was just doing my best. That when they have kids and are having hard days, they can look back and see that their mother struggled too, that no one is perfect and that we all fail at things. And that is okay. We can pick up and try again. They can pick up and try again. And if one day I am not here to say this to them, they have this all recorded for them. And I can reflect if I become so far removed that I forget how hard it is raising a young family with diverse needs.

Failure. It’s okay, we can grow and learn from our failures. It gives us opportunities to be real, to connect, to strip everything back and build again. I am thankful for days like this. It makes the better days seem like a dream, but it also makes me realise things. I get to see that my boy is trying so hard, all of the time. Even when it seems like he is not. He is. And he is my little hero. He will always be my hero. He has far greater resilience than I do. He forgives his mummy day in and day out. He keeps trying to interact with his siblings when they push him away so much and cry. He’s constantly dealing with rejection from them in a way. He’s brave, he’s strong, he tries. He is my world.

Tomorrow will be better. We will all try again.

(Editing to add, this was written a few weeks ago but I’ve only had a chance to upload it now. 😂)

Sometimes

Sometimes it’s really exhausting being a mum to a child on the autism spectrum. I hate to admit that, but I think it’s so important to be real. To be authentic in motherhood. I do want to be clear though, being exhausted, drained etc never ever means that I don’t want my children or love them wholeheartedly. It’s quite the opposite. It’s BECAUSE I love them with every part of my being that I am sometimes so exhausted. Parenting any child is challenging.

Love this kid! He was so excited about a jumping castle.

I adore my boy more than there’s words. I’m his biggest fan and also his biggest advocate. I will do anything to build him up. I love this kid more than life itself. He’s everything and more.

But sometimes it all takes a toll on me too. And sometimes things overwhelm me too. Sometimes it’s all too much and I crumble too. But not for long. I can’t afford to because he needs me. The twins need me.

This morning was one of those times. One of those times where the reality of having a child on the spectrum was made blatantly obvious. Where all of the little things added up to be huge. And meltdowns set in.

We had family photos booked in. They do mini sessions around here once a year. Where you pay next to nothing for a quick 20 minute session. Take a few snaps and done.

We don’t really have any family photos because asd. Pretty much. He hates photos. Doesn’t look at the camera. Moves so fast. And then twins. Try getting both looking at the same time. That’s a challenge on its own. And then motherhood. I’m lucky to get a shower, never mind look half human enough for a family photo.

So I’d booked in these photos. Months ago. Even got a discount. Perfect. Found the outfits in their wardrobes. Got the outfits ready last night ahead of time. Hadn’t found one for me but I could find something to hide behind the kids in sometime in the morning.. I even got to have a nice, hot shower this morning and put on some mascara. Winning.

Yesterday Jeremiah had a mini party, more like a play date that went most of the day and then into the evening with a variety of friends over various times (thanks Covid). It was a lot for him. I should have known better. That he wouldn’t be able to cope with anything extra today. But the photos were booked long before his mini party was.

We had surprised him with a jumping castle for him and his friends. This time last year he still couldn’t jump. So now he can and we thought it would be great fun for the kids. (And 2020 has been such a rough year, so we thought we could all use a little happiness) And it was fun. Until it rained and it had to be let down. That was another meltdown for him yesterday between friends arriving.

This morning we got the castle back up and Scott dried it all off. He’d scooped out all the water. Just so Jeremiah could have another jump this morning before it got taken away. The twins, Jeremiah and us were all on together having some fun.

Actually got all of us looking!

Then it was time to come in and wash Jeremiah’s hair for the photos. Another huge trigger. Washing hair is such a massive sensory thing for him and is so hard to do. We always have to prepare him in advance. We’d been preparing him since yesterday so he knew it was coming and had to be done.

Finally we had the whole family ready to go get the photos. The twins were screaming and crying because they were over tired, ready for a sleep and a bottle. So they were in the car, w were going to drive for a bit so they’d sleep before the photos. We’d get there early. Everything would be okay.

And then the people arrived to take down the jumping castle.

Jeremiah lost it. He bawled his eyes. Complete meltdown that the castle was going. Hyperventilating bawling. The entire time they were taking it down. He was watching and bawling. My heart felt shattered. I wished so much I could help my boy. Unfortunately though, this is life. Sometimes we have to say goodbye to things and people/animals we love. And this was one of those times he just had to go through. That heartache for him is something I had to sit with him on.

He was so distraught watching the jumping castle getting packed away.

He cried all the way to the photos. Oh my goodness. It couldn’t have been a harder start for him.

We had to push him to just walk in the front door to be safe from the road full of cars driving past.

He has an insanely great memory and remembered from last year that Santa came out. Only this time he was terrified. Last year he loved Santa. We asked him why and he said that Santa keeps watching them at daycare on the Santa cam. We explained to him that’s just pretend but he couldn’t get past it. The entire session was him covering his ears, his eyes and generally not going anywhere near the couch where the photos happen. And also crying. And this is all without any Santa – we had said we can do it all without Santa. Santa wasn’t even present to be honest. It was literally a beautiful couch set up for a family to sit on. If we wanted Santa we could request it or it could just be us as a family which is why I picked this place. That wasn’t enough for Jeremiah though. He was too scared and beyond his limits. Trigger stacked to the max. New place. New surroundings. Memories. Thoughts. He was in a complete brain meltdown. And there was nothing that we could do to help him or reason with him.

Desperately trying to get the twins to stay on the couch, and Jeremiah too.

The twins then started crying and screaming. It was all too much for everyone. For him. For me. For the twin. And for Scott.

When we got back in the car there was another meltdown because we had said that if he smiled for the photos that we would go to the shop and he could get a toy (this was in the lead up to going for the photos). Well now he wanted the toy. We explained that he didn’t smile for the photos (or cooperate in the slightest really) so that means no toy.

He lost it. And then we are stuck in a place of we need to teach him about consequences. That we don’t get what we want especially if we don’t do what it was that we had agreed to do. But then he did just go through a huge amount of triggers just this morning alone. What do we do? Give in? Stand firm? Reward that he even walked in the place? Parenting a child on the spectrum is so challenging.

We had offered him Maccas before the photos and he had said his tummy was full so we’d get it afterwards. We asked him if he wanted Maccas when we’d finished and he’d calmed enough to talk and he said no. We asked a few times. Explained that we can’t come back and get it. No he didn’t want it. Okay, we are going home. Asked him one last time but he didn’t want Maccas.

We got home and suddenly he wants Maccas. Another complete meltdown.

Emotionally draining. He doesn’t comprehend.

Yes I know kids, all kids, behave like this at times. The difference with children on the spectrum is it’s trigger stacking. All of these little things are little triggers. Stacked up. Into one tall stack of triggers and then it crashes. Comes tumbling down. And we have meltdowns. One that no reasoning or anything will stop. No it’s not naughty behaviour. My son is spiralling. His emotions are too huge to control. And we can’t do anything but allow him to go through this. We can be with him but that’s about it.

Finally he calmed. After a long time. The iPad is one of our lifesavers in times like this. After he calms that helps him to then regulate his emotions. I sat with him. He held my hand. We sat together. And then he looked up at me and saw my silent tears rolling down my cheek.

Finally calm. Holding on to my hand. Eating one of his birthday cupcakes.

He reached up and wiped them away. (He has the most gentle, kind and caring soul.) Asked me why I was sad and I explained that I was so excited to get some family photos of us all together. Smiling together. And that it didn’t happen but that it’s okay and I still love him. I’m just feeling sad.

He said, “we can try again, we can go on Saturday and try again.” I explained that we can’t. That we’ve had our one turn today, we can’t afford to pay twice. We had to pull the money together for this try today.

He said we can try again, quite a few times. Until I think he finally understood that we couldn’t. And then said to me “it’s okay Mum, we can try again another time.”

Yes my love, we will try again, next year.

My brain was exhausted. It still is. I took him for a daytime nap which is very hit and miss right now. He asked me why he had to sleep. I explained that his brain is so extremely clever. That is is always thinking. Always remembering things. And that brains that are as clever as his also need time to rest or they can get sick. So he lay down beside me, crawled his fingertips and then hand and arm up into my long sleeve of my jumper as he always does when he needs comfort, and we rested together. We both slept. Much needed sleep. He slept for almost 3 hours when we woke him. His brain was exhausted.

Tonight when I was putting him to sleep, I asked him, “what is my favourite thing in the whole world?” And he replied “being my mum” – yes my love. Never ever forget it. I tell him everyday just how much I love being his mum. And just how much I love him. I’m the luckiest mum in the whole world to be his mum. To be the twin’s mum. But it’s also okay to feel exhausted. To have nothing left in the tank. To have poured out everything we have. And to feel disappointment when that one thing we hoped would work out didn’t. That’s how my son feels when he’s got triggers thrown at him everyday all day. He’s a little hero. He has so many challenges and he keeps trying so hard.

Those precious moments when he is with me, his mum, and we are drifting off to sleep, I treasure. One day he won’t need me. That’s okay. In fact that’s the aim.

Today was tough. Tomorrow will be better. The best is yet to come.

If in doubt, call and find out

Last night was a bit more eventful that I’d like. 😂 Yesterday at swimming Jeremiah’s teacher dropped him in the water (without any flotation devices) and then lost him under the floating mat for a few seconds (it’s just one of those freak accidents, she didn’t mean any harm). When he came up he was soooo silent and a bit in shock I think. I thought nothing more of it health wise because he was breathing.

Later on that day, around 4pm he became so sleepy and his health deteriorated pretty fast around 8-9pm. He’d been irritable all day too and unable to sleep more than 20 minutes at a time. His breathing was rapid and laboured. His temperature was 41 degrees and panadol wasn’t bringing it down either. Something just didn’t feel right.

I was trying not to overanalyse things and just be there for him… as I sat on my phone googling “when to take a toddler to hospital.” 😂 because, you know, you don’t want to be ‘that’ mum that take the kid to the hospital unnecessarily. And I didn’t want Scott to think I was worried about our son unnecessarily, too.

Meanwhile, Scott was doing his own search with some friends who had linked the swimming incident to his current symptoms causing us some concern.

So we called the hospital paediatric unit to seek advice. They said he needed to be assessed for something called ‘dry drowning’ – where a kid has inhaled the water when going under water. As the incident earlier had been Jeremiah’s first time probably under water and then had stayed under longer than he should have, there was a risk that he may have fluid in his lungs.

So off we went to emergency. It was a half hour drive away and usually Jeremiah falls asleep in the car especially at night. He didn’t fall asleep on the way there and continued to have laboured breathing.

When we got there they saw us pretty fast. He was checked out and his oxygen levels had dropped to 90% (apparently they should be at 95%) and his heart rate was 184. He also had a wheeze in his chest.

So they admitted us to the paediatric observation area. My usually active toddler just lay there, so still, working hard to breathe. They gave more panadol and monitored him. His breathing and heart took another almost 2 hours to start to improve. And thankfully they did.

The doctor in charge said she was happy with him improving so we could go home and keep and eye on him as he would hopefully continue to improve. She said to bring him back straight away if he deteriorates like he was when we came in.

So we came home and his temperature went back up so on to nurophen it was. 😔 anything by mouth is so hard to get in without a vomit, thanks to his long hospital stay earlier this year when he had his operation – he learnt then how to vomit up any medication. He woke up every two hours or so overnight. Poor thing. (And we feel like crap today too 😉)

But the great news is he seems a lot better today. His breathing is so much better.

We were unsure if we should take him in or not. That laboured breathing is what made us take him in and I’m so glad we did. The nurses and doctors were absolutely fantastic. They explained everything so well. And they confirmed that he definitely needed to be seen with his heart and oxygen the way it was.

If in doubt, call and find out. These things always seem to happen when there isn’t a doctor open to go and see. And if you’re anything like us, we don’t want to clog up the hospital emergency rooms, risk exposure to other bugs or take Jeremiah out in the cold (it was6 degrees) unless it’s absolutely needed. I’m so thankful for the hospital and the way they handled everything.

Here’s a video of him breathing in the emergency waiting room before we were seen: