After sharing about Hope and Down syndrome at school, Alexander made a comment on the way home that I wasn’t expecting: “Mum, I’m lucky I wasn’t born with Down syndrome.” It stopped me in my tracks. I understood what he meant—he’s seen how hard Hope works every day. But does that mean he thinks she’s unlucky? It made me question how we talk about Down syndrome, how we shape our kids’ perspectives, and how we show them that having to work harder doesn’t mean being unlucky—it means being strong.

That Guilty Feeling
Hope started school this week but, it wasn’t just Hope. Alexander also started school but at times, it hasn’t felt like he just started school. Why? Because for the first few days of school, it’s felt like I’ve spent more time worrying about Hope, chasing after Hope and making sure she is settled in. And it feels that way because, if I’m honest, it was like that at times.
Wednesday morning: It’s the first day of school for Hope and Alexander. Bags are packed and we’re dressed and ready. Both Ben and I are taking them into school for the first day. Everyone is excited. We arrive and walk into the school. We go and hang Alexanders bag up and then off to hang Hope’s bag on her hook. Alexander immediately goes down onto the floor where there are blocks set out and he gets building. Hope finds pencils and starts to draw. While they are doing that, I disappear to the bathroom and place Hope’s spare clothes and nappies. I go over and talk to the teacher to be sure I’ve not forgotten anything and then watch to make sure Hope is not trying to run away while also watching to see that Alexander is settled in. Wednesday morning went well.
Wednesday afternoon: For the first week of kindy, we pick the kids up 25 mins before the rest of the school finishes. This means that for 25 mins we’ve got to try to keep the kids occupied while we wait for Lincoln. It’s both Ben and I so together, we manage both the kids, make sure Hope doesn’t run off and chat with the teacher to see how the kids went for the day but most of that chat was about Hope, getting updates on her toileting, how she’s gone and how she’s responded to the new routine.
Thursday morning: It’s just me taking the kids in as Ben is off to work. We arrive and everyone is happy. As I took Hope to hang her bag on her hook, Alexander went independently to hang his. When I turn, he is struggling and the teacher has come over to help him. He then goes to sit on the mat and he starts building like he did the morning before. As he does this, Hope takes off. She’s found the stairs and wants to go up. We convince her to come down and realise she needs a changed nappy. Off we go to change the nappy, and then we try to convince her to come sit down and join Alexander on the mat, but she’s not super interested. We finally get her to join in, and there’s a few minutes left until it’s time for me to go. I say goodbye to both kids and watch them go into the class happily.
Thursday afternoon: Like the day before, Hope and Alexander finish a little earlier than Lincoln. From the moment, I go to get Hope from the line outside the classroom, she wants to go to the playground and I’m chasing her while trying to make sure Alexander was ok. I finally get Hope and go back to the classrooms where Alexander has sat down with the teachers building again with blocks. He’s ok, but I start to feel the guilt. My poor boy isn’t getting the same attention as everyone else is from his mum because she’s so busy with his sister. We then wait for Lincoln and I spend 20 minutes watching and chasing and watching and chasing just trying to keep Hope in my eyesight. The boys have swimming on Thursday so we then go to drop Hope to Ben at work and I take the boys. I have some good time to have a chat with them in the car about their day until we get to swimming. At swimming, the boys are slow, getting out of the car, getting dressed, getting out of the pool. In any moment they can be slow, they are, so I find myself getting upset and growling at them. When we come home, it continues with Alexander not putting his school bag away or not listening and following instructions. The guilt grows… I felt like the only time I paid any attention to Alexander was when I was upste and frustrated with him.
Friday: We had a better day. After putting Hope’s things in the bathroom, I managed to get her to sit down near Alexander and we drew together while Alexander built with the blocks next to us. I read Alexander a story while Hope looked at another book. I then stayed at school volunteering in the canteen and watched the kids as they went in and out of their classrooms. Alexander would wave at me every time he saw me, he would run over and come and chat to me when he could. He was super happy that I was there helping. At the end of the day, I went to Alexander first, but as I was taking off his bag and getting him organised, I see Hope out of the corner of my eye, ready to move. Once again, I chased Hope a little to stop her from going to the playground, leaving Alexander behind, but thankfully it didn’t take too long before I got her to sit down and build blocks with some of the other kids while we waited for Lincoln.
That’s how the last few days played out. It’s been emotional and kinda crazy at times but the biggest thing that I am struggling with is the guilt. The feeling that I haven’t given Alexander the same attention that I gave Lincoln a few years ago, the feeling that I have expected more of him as I’ve had to focus on Hope. This is all on me though, and when I look back, the week wasn’t as bad as I am telling myself it was. Alexander hasn’t complained, he hasn’t asked why I wasn’t sitting with him building all the time. Other parents weren’t sitting playing with their kids, they all sat back and watched. When I think about it, his experience, while maybe slightly different, probably hasn’t been all that different at all to the other kids.
It’s not the first time that I’ve felt this type of guilt though and it’s easy to think that it comes from Hope needing a little more attention. But honestly, it’s the type of guilt all parents feel at one time or another. We ask ourselves “Am I giving one child more attention than another?” This week, I felt guilty that maybe Alexander didn’t get the attention I’ve given others but next week, it could be something different. With school, Hope is learning the ropes, I am still learning the ropes of having twins starting school and juggling everything. Hope will learn the new routine, she’ll know the rules and the drop off will get easier, the guilt will ease until I allow something else to worry me. There’s been times I’ve felt guilty for expecting too much of Lincoln, there’s times I’ve felt guilty that I’ve not helped Hope as much in her speech, sometimes I’ve felt guilt because I’ve wanted to finish something I was doing while the kids have wanted to play. I think it’s just part of parenting. I also think a little bit of concern about whether I’m giving them enough attention is what makes me give them just enough. So while I don’t expect the worry to ever end, I just need to make sure I don’t let the guilt become too much.
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