Tag Archives: motherhood

Deflated

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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.

Everyday.

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.

Here’s one of those highlight reel photos

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.

Failure

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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.

L-R: Jeremiah captures this photo of me trying to console Lorelai who had just fallen and split her lip open while trying to comfort a very sick Justin. The three of us together while Lorelai slept. The three of us when Lorelai’s lip was bleeding. Twins finally sleeping during our power outage.

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.)

I don’t think these need captions 😂

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.

The struggle is real with two toddlers of the same age getting into everything.

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.

My sick babies.

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.

Jeremiah’s bean experiment, having some down time with his dog and iPad. His celery experiment and a few others.

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.

Finally our time. I love how he hugs his baby brother in my belly, and how tiny those hands are next to mine.

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

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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.

Cuties. All dressed up.

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.

He makes life so much fun. Raining going to the shops – he puts a bag over his head to stop the rain! Clever kid. He found the number 4 when shopping for food – his age. Clever kid! And his latest pose when I ask for a photo. Such a ray of sunshine in my life. Love him so much.

Lorelai – our beautiful girl

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This is a reminder to trust your gut. Always trust your gut. I wish so much that I was off, but I am learning that we are given these instincts and intuition for a reason.

I remember the nurse placing Lorelai on my chest so I could see her and Justin on my chest too while the obstetrician stitched my belly up. That hair, that white hair… I remember thinking, “I wonder if she is albino*…” I asked the nursing staff later on in the hospital and they light-heartedly brushed it off and said she is just very blonde.

Lorelai often spews after or during feeds. It often comes out her nose. I’ve mentioned this so many times to various health professionals, both at hospital and the regular check-ups we have for the babies. On a Facebook group someone had the same issues with her baby. A speech pathologist said this is something that you need to see a speech pathologist for. I would never have known a speech pathologist would see a newborn for issues like this. I private messaged the speechie that said to get a referral and she explained a few things to me and why we might want to see a speechie.

So, I asked for a referral for Lorelai to see a speechie. Was told it’s not necessary and she’s feeding well, putting on weight and it’s normal for babies to spew. I insisted on a referral anyway. A speech pathologist called me and asked me so many questions and decided she needed to see us urgently to watch a feed and see what’s going on. She booked me in for the following week.

I have noticed that when I play with Lorelai, look at her, do tracking exercises that it is very hit and miss with her. Mostly miss. It’s like she is looking through you not at you. Like she can’t see you. I brought this up at her first and second check-up after returning home from birth. Both times they looked and said there’s nothing to worry about… but hat nagging feeling inside of me wouldn’t go away.

Long story short, the twins have been very sick and were in hospital for almost 2 weeks. Justin had breathing difficulties. Justin was admitted on the Friday night and monitored. He seemed to come right by morning. Lorelai stayed home with me and would only settle when Jeremiah cuddled her to sleep. Justin come home on Saturday. Both he and Lorelai continued to progressively get worse. Their little lungs and bodies trying to cough was quite hard to watch helplessly. Made me realise why whooping cough is so lethal for babies.

 

She only settled with Jeremiah.

My heart melts

The hospital kept Justin’s bed open overnight in case we had to come back. We monitored him and Lorelai closely at home. They both seemed to be working harder than usual to breathe. The hospital called us on Sunday to ask how Justin was and how Lorelai was too. We had already been talking about if we should take them to emergency or not. How do you know if it is bad enough to go? We don’t want to be presenting to emergency every time they get sick. Sometimes what we might think is bad actually isn’t… but what if we miss something and then should have taken them in? Anyway, the hospital said to us to bring them both in because they wanted to check them over before a doctor went home.

So we packed up a few things and drove both twins and Jeremiah to the hospital. They did their obs and very quickly Justin was placed on oxygen. His little body was working so hard and his levels weren’t great. He was on oxygen for a few days.

Justin was so sick and so miserable. Took ages for him to finally sleep.

While I was feeding Lorelai as a nurse fed Justin and Jeremiah played, I raised my concerns about Lorelai. And while feeding her she did a projectile vomit, out the nose too. The nurse said to talk about these concerns with the paediatrician in the morning because he is really thorough and will investigate it if he thinks she needs it.

When the paediatrician did the rounds in the morning, he listened carefully to our concerns. He got in touch with the speech pathologist Lorelai was due to see later in the week and the appointment was quickly upgraded to an X-ray feed where they watch where the milk goes using an x-ray machine.

So if you’re having any issues with feeds or anything else. Seek answers. Push. Find the right person who will advocate for your little human. The issues we were having include but aren’t limited to; gagging, spews, coughing, slow feeds, long time to attach or coming off, watering eyes, arching back, crying in pain after feeds, and some other things I can’t remember now.

We had that x-ray ultrasound the next day, there’s usually months long waitlists. I realised they also thought my concerns were valid as the 6 people behind the special x-ray machine shield talked and the specialist standing with me told me a little about what they were saying about her swallowing so I could watch the screen and understand what I was seeing too. The X-ray showed some abnormalities with the feeding. Lorelai was aspirating when she was drinking. What that means is that as she was drinking, some of the milk was going down into her airways, and thankfully coming back up. The risk was/is that as she tires during a feed, milk will go into her lungs, and potentially she will get very sick, things like pneumonia. So I’ll explain what this means now for her and us in a minute…

Lorelai in the machine.

So we drove from the bigger hospital back down to our hospital, back to where Justin was. He is a ladies man, all the nurses had enjoyed their cuddles with him – I don’t think he had missed us one bit.

On the same morning of the video x-ray swallow study, a specialist ophthalmologist called in a favour to our paediatrician to come visit Lorelai to assess her eyes. As I said above, I had noticed something a bit ‘different’ with them but didn’t know how to describe it properly. There was this almost rim around her eyes that seemed translucent. And when I tried to do tracking things with her, she just didn’t seem to follow. It was as if she was looking through me, not at me. I had concerns that she was vision impaired. I wondered if I was reading too much into it, but my gut said something wasn’t 100% here. Her eyes would move back and forth, plus she would squint or close her eyes in bright areas like outside.

You can just see the rim around her eyes.

The specialist brought out his special equipment and really checkout out our little girl’s eyes. And unfortunately, our concerns were substantiated. He confirmed that our little girl is legally blind. He said she has some vision because there is some pigmentation there but there isn’t much. The one thing I had hoped was that she would be able to drive, and this is now no longer an option for her. This final step in her diagnosis confirmed that our little girl has Oculocutaneous Albinism (OCA). OCA is a rare inherited disorder (although I like to think it is a beautiful condition reserved for a few special people rather than a disorder – it is estimated only 1,500 people have albinism in all of Australia). OCA is characterised by a reduction or complete lack of melanin pigment in the skin, hair and eyes. It is caused by mutations in specific genes that are needed for the production of melanin pigment in cells called melanocytes. This results in abnormal development of the eyes resulting in vision abnormalities. OCA comes from both parents being carriers of the genes. Lorelai also has nystagmus which is involuntary side to side eye movement and photophobia which is sensitivity to light. She has foveal hypoplasia which affects visual acuity and mis-routing of the optic nerves. The light skin is susceptible to skin damage and skin cancers. There are seven types of OCA and we are awaiting results from genetic testing to learn which particular one she has. Only time will tell how severe her eyes sight is.

Lorelai also had a brain and renal ultrasound which came back normal however the paediatrician still wanted to have a brain MRI done. That was scheduled quite urgently and we managed to get that done. It was so hard to do because they have to lie still but we couldn’t have her sedated this young. Took a lot of patience and the staff at the mri place were amazing, particularly the male in charge of it all. He was incredibly patient and helped us get Lorelai in calmly after a few attempts. Thankfully they got most images they needed and all came back clear.

Lorelai also had her first blood test attempts. Twice they tried and couldn’t get enough blood. Oh it was horrible to hear her quiet, horsey cry and screams. She recovered so quickly though – what a brave girl we have.

Getting her first blood test (attempt anyway)

So in a bit of a summary (if you’ve read this far), beautiful Miss Lorelai has a few areas of special/additional needs. These are, feeding, OCA particularly vision, Low muscle tone and her immune system issues.

Feeding:

For now and for the forceable future, Lorelai has a very strict limited amount by mouth of either thickened breastmilk or thickened formula which will hopefully increase over time if she improves. She has a strict timeframe to drink it and what isn’t drunk in that window has to be stopped and discarded (to reduce her fatiguing and then therefore aspirating as she tires). The rest of her milk quota is done through a nasal gastric tube (NG tube). This is a tube through the nose and down into her tummy. It has to be changed at least once a week by a hospital visit (45 minutes each way). So far this has been more frequent than weekly as the tube tends to come out a bit, or the size was too big, she was having trouble breathing, etc. So we are becoming regulars at the hospital – not something I ever imagined for our family.

If she’s having a feeding tube we may as well have it in style thanks to a little company called A Simple Patch. So cool hey!

Meal prep for 4 feeds for each twin.

I think she is trying to see something during her tube feed.

We also have to be very strict with her feeding position. She has to be in an L-shape with her head raised, bum to my tummy. This also reduces the aspiration risk. When doing the gravity NG tube feed she has to be head raised and often wants to be held. We encourage her to take the dummy to try and develop her suck during the feed. The feed for her takes around 30 minutes to an hour from start to finish. It takes around an hour to prepare all of the various things needed for four feeds for Lorelai. And then the steralising afterwards too. I have learned so much about alternative feeding since having our gorgeous girl. The hardest thing to learn to do was testing her stomach acid prior to feeding. It isn’t fun drawing up liquid from my little girl’s tummy, but we have to do this to make sure the tube is in her tummy and not her lungs for each feed. It is particularly challenging feeding two screaming babies. I have to pick one and feed then feed the other – different to how I had planned to feed twins which was both at the same time.

We also have to monitor her vomiting. She vomits so much and so easily. She has a very strong gag reflex. If anything enters her mouth she gags and spews. This can also dislodge the NG tube meaning more hospital visits.

OCA and Vision:

“OCA is inherited as an autosomal recessive genetic condition. Recessive genetic disorders occur when an individual inherits an abnormal gene for the same trait from each parent. If an individual receives one normal gene and one gene for the disease, the person will be a carrier for the disease, but usually will not show symptoms. The risk for two carrier parents to both pass the defective gene and, therefore, have an affected child is 25% with each pregnancy. The risk to have a child who is a carrier like the parents is 50% with each pregnancy. The chance for a child to receive normal genes from both parents and be genetically normal for that particular trait is 25%. The risk is the same for males and females.” https://rarediseases.org/rare-diseases/oculocutaneous-albinism/

It was a lot to take in when she was officially diagnosed/labelled OCA. And my way of coping is to crack a few jokes. So I awkwardly cracked a bunch of vision jokes with the specialists, saying “I guess we will keep an eye on her then…” there was awkward silence from them so I followed it up with a cracker, “See what I did there?!” Over time our paediatrician has gotten to know my sense of humour. I’ve even managed to get him to crack a few jokes (he reminds me of Dr House from that TV series with his dry/dd humour, yet comprehensive approach).

I just remember thinking in my head, as it felt like it was exploding and in a different dimension where this wasn’t happening to our little girl, but my heart was feeling like God had let us down. It was the one thing I didn’t want for my girl. I have always, always yearned for a girl. To have a mother daughter relationship. When I found out one baby was a girl I was over the moon happy. And to find out that my girl, my dream, has such complex issues broke my heart a bit. Not because I think she is defective, she’s only sheer perfection to me fyi. More because I know she has lifelong challenges ahead of her. Over the last 2 weeks I have felt like God has been reminding me that He hasn’t let us or her down. He has given us such wonderful blessings. And I am reminded back to my days as a young, naïve, yet optimistic and dream-believer teenager, that I wrote down in my diary something along the lines of “my hands will be used to touch/help thousands of others.” That was my goal for my life back then. I just wanted to help others. I didn’t know how at the time. But through our IVF journey, our miscarriages and then our beautiful miracle Jeremiah, and now the twins, God has done exactly that. He has used my hands (through the blogs) to help thousands (and I don’t at all mean that in a self-gratifying way, it’s quite the opposite – God has used our story and our lives to do far more than we could have ever done to help others if we’d have had an easy life). I’ve had so many people contact me about our IVF journey and miscarriages that I have been able to give some help/support/hope to. So there was so much purpose in our heartache. And now this. Perhaps through this we will help others as so many have already helped me as I have been on my quest to understand what this all means. Thank you if that is you – you all know who you are.

Immune:

Our paediatrician is still investigating Lorelai and running a range of tests for an immune condition. He seems to think that she may have an immunodeficiency/ autoimmune compromised disorder. And what this means for now is that she can’t have any of the live vaccinations and nor can Justin because there is evidence to support that people with these immunes that are compromised may pick up the thing that the vaccination is trying to prevent them from getting (because it is a live vaccination). I don’t want to start a vaccination debate here – this really isn’t the time or place for it so please don’t even start – any comments will be deleted). So both her and Justin will have to rely on herd immunity to not get sick. It also means that any fevers around 38 will require hospital for her (with Jeremiah we just watch and observe and don’t get too concerned until it reaches around 40 degrees). It also means she will probably get sick more frequently and we really need to protect her by making sure no one comes into contact with her (or us) if they are sick – this is so so so important and also very hard to enforce. We have to be so very careful with her because she is prone to being sick and her little body isn’t strong enough to fight hard.

Going for her brain ultrasound.

Going for their ultrasounds – Justin was still on oxygen.

Turns out twins really do have a special bond.

After the video x-ray learning the new feeding position for bottles.

Probably doesn’t need a caption, but I love the rawness of this photo.

Rocking the tube!

Low muscle Tone:

She has low muscle tone which means she is seeing an occupational therapist (OT) and a physiotherapist to help her improve this. Our paediatrician seems to think everything above is all linked and he is trying to get to the bottom of it all – he said we should expect another diagnosis in addition to the OCA.

So trust your gut ladies and gentlemen. If you’re not being heard, insist. Seek information elsewhere. If I hadn’t seen the post another lady made and if another speech pathologist hadn’t told her she needs to see one then I wouldn’t have asked for a referral and we’d have possibly unintentionally endangered our little girl’s life. And if the paediatrician who first saw us on entry at the hospital when Justin was sick was the only one we saw, Lorelai still would be undiagnosed. I’m forever grateful that God brought us to the hospital when we went, for the nurses that wrote in the notes my concerns so that the right paediatrician for us could see us. He is brilliant and we are so thankful. Of course, I don’t want these labels for our daughter, but living in denial doesn’t change anything. That would just prolong the help and early intervention that Lorelai needs. Yes, this is so exhausting. Of course, having kids is exhausting. But having a beautiful older son with complex additional needs and now newborn twins, with many additional needs (Justin was easier but he is having terrible feeding issues too now and is also being seen by the speech pathologist, OT and physio) has really drained us in so many ways. Mentally, physically and financially. Did I mention I re-fractured my back in two more places a week and a bit before we were admitted to the hospital? The almost 2 week stay on pull out beds definitely didn’t help my back.

Our request is prayers for Lorelai and for her future. God is a God of healing. We pray that he restores Lorelai’s vision – that would be such a miracle, but if not, that she has better vision than predicted. That she develops well (they are saying she will be behind on all of her milestones due to many reasons E.g. her low muscle tone). They are trying to find what else is the cause/diagnosis.

We are still dealing with this as best that we can. Knowing our little girl is vision impaired leaves many questions unanswered. Will I be able to return to work or will I have to be a carer full time? Financially how will we provide for our children but particularly her and her needs? How will we make our living environment set up for a vision impaired child? So many questions but we know God holds the answers and will lead us through. We decided to once again share openly because when we are open, we can help those walking a similar path with their family or their own lives. When we keep it to ourselves, we limit the potential for greater good that can come from our own mountains that we need to climb.

To teach Jeremiah not to pull out Lorelai’s tube (he wants to help her not ‘hurt’), we got him a doll and attached a tube. He took it to daycare to show his friends.

Lorelai Grace Merle – my Nanna would be so proud of your resilience. 

I remember driving back to the hospital after having a night at home so that I could be with Zazu (she is on her last innings, she’s almost 16 and isn’t doing so well). While I was driving back I felt a flood of emotions. I had kept it all together quite well until then. But then I was suddenly on my own. I began listening to the CD in the car cd player. It was Finding Faith. The first track played and it hit me to the core. God used those words to remind me of His good hands. He’s got this. That He could heal Lorelai if He wanted to, restore her vision. But if He doesn’t, that’s okay, God will carry us when needed and that everything will be okay. These are part of the lyrics:

Cause the hands that hold the world hold my heart
And the hands that heal the world heal my heart
There’s never been a heart that you can’t change
There’s never been a life that you can’t save
Cause the hands that hold it all are good hands

When I feel the weight crushing down on me
I know I’ll be okay, God will carry me

https://www.youtube.com/watch?v=PQqIscnqX6Q

I actually ended up sending a message of thanks to Finding Faith for sharing their music with us all. It made a huge impact on my perspective. And I was sent back some very encouraging words particularly around vision impairment. And if you’re reading this – thank you so much Tim. Those words truly uplifted my heart.

The week and a half or so back home have been every bit exhausting. Functioning on little to no sleep and having screaming crying babies sure does mess with the mental health. Trying to stay on top of feeds and preparation is stressful. I always need to stay at least one step ahead or everything crumbles in screaming sirens of two babies. Yes, definitely double the blessing, and would be exhausting anyway if they were ‘regular’ babies, but with the additional needs of Jeremiah and now also these beautiful twins, it’s harder than I can place in words. We have been stretched more than we thought possible. The complexity of feeding Lorelai is quite consuming. And over the last week Justin has developed complications with feeding too.

But by faith I know, we will get through this and God will use all of this to bring good. He already has. And what I am learning will help me continue to help/support others. Having Jeremiah with all of his additional needs has helped me learn more and I think has (hopefully) made me a more compassionate person. I’m sure Lorelai will teach me that sight isn’t everything. That the world is a beautiful place even if you can’t see it all. I am reminded of Louis Armstrong’s famous song, what a wonderful world.

Besties

If only parenting twins was always this ‘cute’

Hopefully by sharing our journey with you, you might understand more about Albinism and perhaps this might just help another person, or at the very least, this might help our little girl navigate the world with a community of support and love surrounding her. We don’t want our little girl to be ‘different’ or looked at as ‘disabled’ but rather that those around her will see her abilities and strengths and love those. She will have two gorgeous brothers either side of her to love and protect her, as brothers do. And in case you’re wondering, no I don’t think God caused this. I believe that God will use this, yes. That God made her perfect as she is, yes. But I don’t believe he causes any type of hurt or heartache, but He can bring good things from all situations and we choose to believe that in all things He works for the good, and so He does for our little girl, too.

*Please note, I have learned a lot about Albinism. Calling someone an ‘albino’ is considered derogatory and degrading. It is more acceptable to say ‘someone with albinism’ or ‘….. has albinism.’ Back in the hospital I had no idea about the term albinism, I had only ever heard the term albino. Hopefully this educates others too. 😊

Our miracles, all three of them.

Proud big brother.