Aimee's Story - Life with Down Syndrome; there is nothing down about it.

Aimee's Story - Life with Down Syndrome; there is nothing down about it.

I stumbled across Aimee Clarke almost by accident when her gorgeous little man Hunter popped up on my IG feed. I started to follow her and was treated to beautiful shots (seriously, you need to check out this girl’s feed) of her busy toddler Hunter and her growing belly as she and her hubby prepare to welcome Baby Number 2 later in the year.  

Aimee refers to herself as a T21 advocate because Hunter was born as part of the #luckyfew club. T21 is also known as Down Syndrome and like we have seen in previous blogs from DS Mumma’s, there really is nothing down about it.

So here is my honest and open chat with the beautiful Aimee and how life with a little extra is not really all that different to yours or mine. 

You refer to yourself as a T21 advocate. What is a T21 advocate?

I essentially see myself as an advocate for Hunter and his wider community, I do that by showing our everyday life which demonstrates that it is really no different to anyone else’s. Hunter walks and plays like any other kid and I’m trying to break down the sigma that just because you have a disability doesn’t mean you are restricted in life. Hunter still has tantrums like any other kid, we go for walks everyday, he goes to playgroup, he plays with his friends just like other kids his age. 

Language can be a really sensitive topic for parents of children with disabilities. For people reading this who don’t know, T21 is also known as Down Syndrome. Do you prefer T21 or Down Syndrome? 

For us, saying down syndrome is technically correct but the type of down syndrome Hunter has is Trisomy 21. So neither is incorrect. I think you just go off what the parent is comfortable with. I don’t mind if people say Hunter has down syndrome or Hunter has T21 or Trisomy 21 as they are all true and correct so in no way at all offensive. I will predominantly refer to Hunter as having down syndrome as a lot of people don’t actually know what Trisomy 21 is until you explain there are 3 different types of down syndrome.

When Hunter was born they said your son has down syndrome but he’s got T21. I was like, ‘what’s that?!’ I had to learn all about it myself and how to refer to people with disabilities. I didn’t know there were different groups of communities that like to be referred to in different ways. This is why it’s good for the advocate to establish the language or to not be afraid to say ‘Hey, I’m just not sure, how would you like me to refer to your child.’ Most people are more than happy to answer those questions. 

I find kids have that unfiltered truth and will just come straight out and ask why his tongue pokes out and I happily explain ‘Hunter has down syndrome and because he has down syndrome he has low muscle tone so sometimes his tongue pokes out a little bit more’. And they just go off and it’s nothing to them, they are just curious. That’s what I say to people is just by educating yourselves is the best way to learn in any situation. That’s why I say if you’ve got questions just ask as that’s how we learn. 

What is the biggest myth about people with down syndrome? 

I feel one of the biggest misconceptions is that they are constantly happy. People seem to think that people with down syndrome don’t have any other emotions but we need to remember that they are human beings and humans have emotions.  Everyone experiences emotions just some are heightened. Hunter is generally a very happy kid, but he can have the biggest tantrums if I don’t get his dinner on the table quick enough just like any other toddler.

Your pregnancy was one of mixed emotions in relation to issues with Hunter’s heart, can you tell us about that experience? 

Yes it was very bizarre, at my 20 week morphology scan they told me I had a short cervix and that they found some heart stuff. I had to have a further scan where they ruled out any problems with my cervix. There were still concerns around his heart so I had to see an obstetric cardiologist as they thought he might have had a VSD (ventricular septal defect – which is a hole in the heart), but the cardiologist reviewed everything and said we were fine but I had to go back again in a month to double check again. We were given a clean bill of health so we thought all that worrying had been for nothing! 

So you’ve gone into your labour and birthing experience not expecting any curveballs; how long after Hunter’s birth did things start to change? 

I had Hunter about 9am and the following day at about 6am I got called into ICU as Hunter had been admitted overnight. There were two specialists waiting for me and they sat me down and they said he was showing markers of down syndrome which meant there could be other health issues, especially ones related to his heart.  I was by myself as my husband missed Hunter’s birth as he did not get back to town until the night of the day Hunter was born. Due to visiting hours he had to leave that night and in the morning the doctors told me they had rounds and wanted to talk to me before he could make it into the hospital. 

When my husband arrived he met with me collapsing into his arms crying and he was like “what the hell has happened?”

It was a few hours later that we got Hunter’s bloods and ECHO results back where they confirmed he had down syndrome, specifically Trisomy 21; he also had 3 heart defects and then they transferred him to an intensive cardiac unit. It was like a smack in the face and I  just cried, I couldn’t talk and then had the worst headache for 3 days from all the crying. I’d had the most beautiful day with Hunter straight after he was born and then after this news I cried every time I touched him. Even when I was close to him. It wasn’t his diagnosis, it was more the shock of everything that had been dumped on me, not having slept, not having my support people with me and my baby being in ICU on a CPAP machine.

Hunter had 3 heart defects, what were they and what needed to happen in order to get him to the happy healthy boy he is now? 

He had two holes which were an ASD (atrial septal defect) and a VSD (ventricular septal defect), then he had an aortic arch which is a narrowing of the arch in the heart which if it was too close it would stop the blood flow going into his heart which would essentially stop his heart working. Amazingly enough, it is narrow but it didn’t close so that was their main concern at the time. They were really worried about it continuing to narrow and then shut but it ended up remaining open so his heart remained stable and we were able to wait for him to get a little stronger before going for any surgery. 

How long did you spend in hospital?

All up we were in hospital for a month and we were discharged three days before Christmas which was the best Christmas gift of all. In saying that we came home with 5 oxygen tanks and he was on oxygen for 5 months until he had his heart surgery.

How did you establish feeding with Hunter? 

I worked  tirelessly around the clock to try to establish breastfeeding with him. Unfortunately the breastfeeding didn’t work but he took to a bottle like a champ. I was pumping every two hours for a few months and then miraculously when he had his heart surgery he was suddenly able to breastfeed. It was so crazy he was able to coordinate his breathing and his sucking, I never thought at 5 months old he would be able to switch over to breastfeeding. I was so glad I stuck out pumping because then we got to have a really nice 5 months of breastfeeding.

One of the really contentious issues around Down Syndrome is whether or not you tested during pregnancy. What are your thoughts around this?

I think it honestly depends on the individual person like I said I’m somebody that’s very driven on knowledge and educating myself. We did decide to do testing for this pregnancy just because we wanted to know if anything was going on so that we weren’t surprised because it was really traumatic for me when Hunter was born. I wasn’t expecting to have an ICU stay and I wasn’t expecting to have a child with heart issues and to have five months of oxygen. I wasn’t prepared for that and it was a lot to take on and for some people that’s totally fine and they just roll with it and I did roll with it but I still really struggled. 

Testing is a very hot topic within the down syndrome community. Some people are very against people going ahead and doing prenatal testing just because they think it increases the risk of people terminating which I completely understand. However I also understand the other side of it and most people just want to be educated and prepared. I am one of those people and I don’t want to be in that situation again.

Do you get many people reaching out to you because of your Instagram?

I’ve had quite a few people who had postnatal diagnosis where they’re babies are one or two months old and just saying that they came across my page and said that I have inspired them. I find it strange as I’m just a typical mum. Hunter and I are doing typical things but I guess for people who have just had a baby where they’ve just been told that their child is probably not going to be able to do all these things and their life is going to be hard, it’s probably really refreshing for them. I just say to people don’t stress about it, just enjoy those first few months of being a parent in the newborn stage; don’t rush into therapy, Hunter didn’t start therapy until he was ten months old and so I just got to enjoy hanging out with him. 

I see you sharing a couple of photos about a playgroup that you attend with adults who have Down Syndrome that volunteer.  Can you tell us about this initiative? 

The Down Syndrome Association in Western Australia holds two playgroups. One for South of Perth and one for Metro Perth. They hold one every week for the school term and it’s fabulous. They usually plan stuff for each playgroup and they’ve invited people to come in like music therapy, but a lot of time it’s just a whole bunch of families catching up, mums talking shit and the kids playing. There’s some structure and stuff like story time and nursery rhyme time and it’s really fabulous because they actually have young adults from the community that come in to volunteer and they’re just amazing. They help out and usually cuddle and entertain the kids. 

How important is it, do you think, for society to see adults with Down Syndrome being active members of their community? 

Yes, I think it’s amazing because I think what would have instilled a lot of fear into a lot of parents is the future and I think when they meet adults with down syndrome who are so successful really helps to ease a lot of fears. It also helps us to understand a lot more of what life will be like for our children as they as they get older/ The Down Syndrome Association here in WA are just amazing as they do so much for the community with education and support and just helping with people transitioning to school, transitioning out of school into jobs or going to TAFE etc.

What would you go back and say to Aimee who was a week into her life as Hunter’s Mum?  What helped you get through?

As cheesy as it sounds it really was Hunter that got me through and obviously just the support, my family and friends. The people who just were checking in and coming to visit him and us. We were really fortunate to have an amazing support network. 

I say to people who know somebody who has just had a child with special needs, first of all just offer them congratulations, you shouldn’t do anything differently. Just checking to see how they are and how the baby is, ask if they need anything. I think just being there and supporting your friends and just being there for them is the best thing that you can do for a new parent, not going and asking anyone questions like what’s wrong with your baby.

You can follow Aimee and Hunter on IG, her handle is @life.with.the.trews

Keep an eye on Mummy Matcher socials as we will most definitely be sharing the news when Baby Trew edition 2.0 makes his entrance!

Want to read more about having a child with a little extra? Click HERE to read an article from Ingerlise and how her daughter Maia was the catalyst of the start of an amazing kindness project called 21 Gifts. 

So how EXACTLY does the
Mummy Matcher Service help you?

What You Gain

+ Connection

Talk to other Mum’s in similar situations while you’re at home, sitting in the waiting room for appointments, in hospital or even in the car! 

+ Understanding

Have a conversation with someone who you don’t have to explain the little things to because they already GET IT.  

+ Community

Be part of a community of women who have also faced adversity and like you, are seeking connection. 

What You Reduce

- Loneliness

No longer be alone during your journey on this daunting, unexpected and what can at times be a scary as hell road.

- Isolation

No longer feel like you are the only person in the world who’s motherhood journey isn’t turning out how you thought it would.

- Detachment

Find women you can actually connect with. Women you can nurture and build a real friendship with.  

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