Harps is an award winning blogger who shares her remarkable journey of motherhood after experiencing post natal depression and an unexpected diagnosis of Down’s syndrome. Her readers have often coined her words “relatable” and “warming”.
I haven’t really used this space to air my feelings in a while. It isn’t because I haven’t wanted to, it’s because I haven’t had the time to. Or I don’t have the words to really articulate how I’m feeling. Has anyone ever felt empty but full all at once?
There is a part of me that fears judgement. I guess like most people? There’s a part of me that doesn’t want people to think my son’s life isn’t worth living because it absolutely is. There is a part of me that doesn’t like to share my struggles without offering
a glimmer of hope – a silver lining. Recently, I’ve felt like I’m stuck in a bit of a funk. My brain has felt so foggy.
I try and raise awareness on everything that Down’s syndrome IS NOT, through Saajan, through our family by giving a very real life account. There’s the parts that bring us sheer unimaginable joy and then there are some not so nice parts.
But sometimes, just sometimes, I let the label get the better of me (please don’t judge me). Like all children, there will be hurdles. We’ve been through our fair share of challenging times with Arjun (many of which I’ve not chosen here to respect his privacy)
but for some reason, with Saajan I panic that this is forever “because he has Down’s syndrome” and it takes them a little bit longer to learn things. Perhaps the fact that we are in the thick of his EHCP heightens my feelings. Experience has shown me though
that nothing is forever though and reminding myself of that isn’t always easy. It reminds me of that feeling I had when Arjun was first born and I had PND and – I felt like those initial few months would be my life forever. I felt stuck.
Recently, we’ve really struggled with Saajan at meal times. I’ve taken it to heart for some reason. I think it’s because I run away with my fears for the future as I described above. He fell in to a habit (admittedly our fault) of eating
in front of the TV watching Peppa Pig – that’s not the part I had an issue with (though it REALLY grated on me that he refused to sit on a table with us), it was more that he’d tip his food out of the plate and eat that way (GROSS). If we tried to sit him
at a table with us, he’d just swipe and throw the food on to the floor or worse, his plate. You can imagine how fun meal times are at ours! We’re a pretty regular family for the most part, but I’ve found it really really stressful at meal times and to be honest
I have felt so guilty – I’d try and make meal times pleasant by having us all sat together once Preetam gets home from work but it would never go to plan. I felt like a complete and utter failure. I felt it was my fault, my fault that I’d been too distracted
to set up his meal times properly from the start, my fault that Arjun would witness this behaviour daily and notice that Saajan was getting attention for it. I felt guilty that Preetam had a long day at work and would be welcomed by complete chaos. I felt
guilty that Saajan can’t speak enough words to tell me WHY he behaves the way he does at meal times. I questioned my ability as a mother, as a wife.
I’m so used to having the support of therapists – I’m so grateful for it. I remember our SALT saying to me “all you need to do is be a mum and love your son, we are here to help with the rest” – this was one of those behavioural things that I knew no therapist could tackle. This was something I needed to do. Lots of great things happened in January but I walked around with a heaviness, I struggled to sleep as I fell so deep in to thought about why our lives just couldn’t be simple – why we couldn’t go to a restaurant and just enjoy a meal as a family. I felt guilty dancing with the idea of taking Arjun out for meals alone – Arjun doesn’t like going anywhere without Saajan but equally I know he probably doesn’t like being around stressful situations either.
It’s crazy how easy it is to allow any hurdles to overshadow all the amazing things about him – how he’s so friendly, a good sleeper and so determined. I quite quickly became a not so nice version of myself by becoming almost fixated on the hurdles.
A few people suggested allowing Saajan to have the iPad during meal times – this is something that we’ve not done with Arjun during meal times (he has it outside of meal times) and I really didn’t want to introduce it for Saajan because
it would mean doing the same for Arjun (we only have one iPad lol). Also I had two issues – one was him not sitting at a table and the second was him tipping his food out.
Amidst my frustration fear and worry, came a force, a burning desire, a determination – I made it my absolute mission to address the situation face on. Down’s syndrome or no Down’s syndrome, he is MY BOY, and I know I can’t write him off because of a sh*tty
label. He has shown me just how smart he is, and I KNOW he’s able given the right support. I KNEW I needed to put in the effort and commitment to making a change. I started by getting Arjun on board – Saajan’s biggest cheerleader.
1)
We placed the kids Ikea table downstairs by the dining table
2)
I understood that I’d need to use another distraction from the TV for him to sit put at a table, so I placed some of his favourite Peppa Pig toys at the table – a book, a magnetic board and a musical toy.
3)
If he refuses his food, I let him toddle off but after a few days, he realised that he had to come back to the table to eat as it wasn’t going to follow him (silver linings of him not walking – I bet he’d carry his plate away if he was!)
– I can tell when he’s just not in the mood yet to eat and I allow him to go and return 10/15 minutes later when he feels to. I know this isn’t ideal but for us, it’s progress.
4)
I only fill his plate with half of his food incase he does throw it (reducing massively) and he knows that once it goes on the floor, Bruno gets it
5)
I sit on a little chair next to the boys so I’m at their level (and to do damage control just incase)
6) I do dinner time for the boys just before Preetam arrives so that it’s a little calmer on his return
Though I acknowledge we aren’t 100% there yet, we are making progress. Last night, as Saajan sat with his Dada Ji and Dadi Ji at the dining table babbling away whilst eating, my eyes welled up – just a few weeks ago, it felt like our future
was dreary just because of meal times, but now I see the light. Now I have hope that soon we will be able to go to a restaurant and just enjoy a family meal in peace.
Arjun has been my guiding light – he’s been so patient, so good with sitting and eating and modelling to his brother how it’s done. I am so incredibly proud of him.
My next steps are to continue doing what we’re doing for now and then slowly transition him back on to the dining table.
I probably sounds really melodramatic but I know that anyone that has struggled with meal times will get it.
I don’t want to start doing a happy dance just yet, it’s only been a couple of weeks, but I do feel a huge sense of achievement – it’s also a reminder of how much my babies can achieve with just my time alone reminding me to remain focused
on what matters – them.
So sometimes, even my judgement can get the better of me. And most of the time, Saajan is there to show me “I told you so”.
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Hi, I’m Harps, an award winning blogger who shares my journey of motherhood after experiencing post natal depression and an unexpected diagnosis of Down’s syndrome. Readers have often coined my musings “relatable” and “warming”. I have gone on to turn my passion of connecting people into working with brands ranging from household names through to small businesses and sharing with my engaged audience.
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I haven’t really used this space to air my feelings in a while. It isn’t because I haven’t wanted to, it’s because I haven’t had the time to. Or I don’t have the words to really articulate how I’m feeling. Has anyone ever felt empty but full all at once?
There is a part of me that fears judgement. I guess like most people? There’s a part of me that doesn’t want people to think my son’s life isn’t worth living because it absolutely is. There is a part of me that doesn’t like to share my struggles without offering
a glimmer of hope – a silver lining. Recently, I’ve felt like I’m stuck in a bit of a funk. My brain has felt so foggy.
I try and raise awareness on everything that Down’s syndrome IS NOT, through Saajan, through our family by giving a very real life account. There’s the parts that bring us sheer unimaginable joy and then there are some not so nice parts.
But sometimes, just sometimes, I let the label get the better of me (please don’t judge me). Like all children, there will be hurdles. We’ve been through our fair share of challenging times with Arjun (many of which I’ve not chosen here to respect his privacy)
but for some reason, with Saajan I panic that this is forever “because he has Down’s syndrome” and it takes them a little bit longer to learn things. Perhaps the fact that we are in the thick of his EHCP heightens my feelings. Experience has shown me though
that nothing is forever though and reminding myself of that isn’t always easy. It reminds me of that feeling I had when Arjun was first born and I had PND and – I felt like those initial few months would be my life forever. I felt stuck.
Recently, we’ve really struggled with Saajan at meal times. I’ve taken it to heart for some reason. I think it’s because I run away with my fears for the future as I described above. He fell in to a habit (admittedly our fault) of eating
in front of the TV watching Peppa Pig – that’s not the part I had an issue with (though it REALLY grated on me that he refused to sit on a table with us), it was more that he’d tip his food out of the plate and eat that way (GROSS). If we tried to sit him
at a table with us, he’d just swipe and throw the food on to the floor or worse, his plate. You can imagine how fun meal times are at ours! We’re a pretty regular family for the most part, but I’ve found it really really stressful at meal times and to be honest
I have felt so guilty – I’d try and make meal times pleasant by having us all sat together once Preetam gets home from work but it would never go to plan. I felt like a complete and utter failure. I felt it was my fault, my fault that I’d been too distracted
to set up his meal times properly from the start, my fault that Arjun would witness this behaviour daily and notice that Saajan was getting attention for it. I felt guilty that Preetam had a long day at work and would be welcomed by complete chaos. I felt
guilty that Saajan can’t speak enough words to tell me WHY he behaves the way he does at meal times. I questioned my ability as a mother, as a wife.
I’m so used to having the support of therapists – I’m so grateful for it. I remember our SALT saying to me “all you need to do is be a mum and love your son, we are here to help with the rest” – this was one of those behavioural things that I knew no therapist could tackle. This was something I needed to do. Lots of great things happened in January but I walked around with a heaviness, I struggled to sleep as I fell so deep in to thought about why our lives just couldn’t be simple – why we couldn’t go to a restaurant and just enjoy a meal as a family. I felt guilty dancing with the idea of taking Arjun out for meals alone – Arjun doesn’t like going anywhere without Saajan but equally I know he probably doesn’t like being around stressful situations either.
It’s crazy how easy it is to allow any hurdles to overshadow all the amazing things about him – how he’s so friendly, a good sleeper and so determined. I quite quickly became a not so nice version of myself by becoming almost fixated on the hurdles.
A few people suggested allowing Saajan to have the iPad during meal times – this is something that we’ve not done with Arjun during meal times (he has it outside of meal times) and I really didn’t want to introduce it for Saajan because
it would mean doing the same for Arjun (we only have one iPad lol). Also I had two issues – one was him not sitting at a table and the second was him tipping his food out.
Amidst my frustration fear and worry, came a force, a burning desire, a determination – I made it my absolute mission to address the situation face on. Down’s syndrome or no Down’s syndrome, he is MY BOY, and I know I can’t write him off because of a sh*tty
label. He has shown me just how smart he is, and I KNOW he’s able given the right support. I KNEW I needed to put in the effort and commitment to making a change. I started by getting Arjun on board – Saajan’s biggest cheerleader.
1)
We placed the kids Ikea table downstairs by the dining table
2)
I understood that I’d need to use another distraction from the TV for him to sit put at a table, so I placed some of his favourite Peppa Pig toys at the table – a book, a magnetic board and a musical toy.
3)
If he refuses his food, I let him toddle off but after a few days, he realised that he had to come back to the table to eat as it wasn’t going to follow him (silver linings of him not walking – I bet he’d carry his plate away if he was!)
– I can tell when he’s just not in the mood yet to eat and I allow him to go and return 10/15 minutes later when he feels to. I know this isn’t ideal but for us, it’s progress.
4)
I only fill his plate with half of his food incase he does throw it (reducing massively) and he knows that once it goes on the floor, Bruno gets it
5)
I sit on a little chair next to the boys so I’m at their level (and to do damage control just incase)
6) I do dinner time for the boys just before Preetam arrives so that it’s a little calmer on his return
