Tuesday, July 16, 2024

Ain’t nothing down about Hux

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Alesha Millard, The Koondrook and Barham Bridge Newspaper

If you’ve been fortunate enough to meet six-year-old Huxley Hall, then you’d agree he probably had you won over within the first 5 seconds from his sweet, cuddly and perpetually grinning smile.

Affectionately known to everyone as Hux, he is the son of Barham locals Ben and Kirby. He is also the cheeky little brother to his sisters Islah and Mila. Huxley was born at 36 weeks gestation on March 15, 2017 at Cohuna Hospital, weighing a small 2,370 grams. Kirby and Hux were sent to the Bendigo Base Hospital less than 48 hours after birth due to medical staff having concerns of his physical and neurological behaviours. After tests and scans, it was confirmed, and Hux was diagnosed at 10 days old with Trisomy 21 (Down syndrome) as well as an Atrial Septal Defect, which was a 9mm hole in the wall of the heart which separates the two chambers, causing extra blood to leak into the lungs and cause the heart to overwork itself.

It was a whirlwind first few weeks adapting to life with a beautiful newborn, pending heart surgery and learning all about Down syndrome and how life was going to change. Identifying their son was an individual and just like everyone else and that he would be good at certain things and other things he would find harder.

At 9 months old, Hux underwent open heart surgery to close the hole in his heart. The operation was a success with no post op. complications, and he was home five days later. A lot of Hux’s milestones were delayed due to his surgery and diagnoses. 

Hux never crawled as his muscle tone was too weak, but as Kirby described, he ‘bum shuffled’ to get around, until the age of 4 when he started walking more independently. Despite regular physiotherapy since he was 6 months old, he now, at 6 years old, is able to walk only up to 50m on a flat surface until he needs a break or assistance.

Hux has speech therapy by local speech pathologist Sarah Lahy, but previously attended speech regularly in Echuca. Hux started baby babbling at 12 months old and saying his first words at 3. His vocabulary is still very limited, equivalent to an 18-month to 2-year-old, with up to 50 words and a 2-3 word sentence capacity. Kirby added that although he is able to tell us some of his needs, for example, “drink”, “poos” (toilet), “bath”, “sore/hurt”, he isn’t able to tell us where he is hurt/sore, whether he feels unwell, whether he is hot/cold or uncomfortable, which is one of the most difficult challenges when he presents unwell or not like himself.

During his toddler years, Hux found the love of Disney. It started with the movie Frozen and then went to Toy Story, of which he found the character Woody extraordinary, and connected in a way nothing else did. Woody is a cowboy toy and when no one is watching, Woody and his toy mates all come to life and go on adventures. This usually includes rescuing other toys from disasters.

A lot of Huxley’s imaginary play has stemmed from watching these movies. He acts them out, role plays the rescues, has learned words and has made a comfort out of the character. Hux has his own Woody toy, which he drags around everywhere, sleeps with, takes to school, and Woody has even had a few unnecessary ventures in the toilet and undertaken some dishwashing. 

Kirby said, “As soon as I realised this little obsession was something more than just a phase, I had to invest in several Woodys. The thought of losing one made me anxious, and I have to wash and rotate them regularly. They’ve been doctored, drawn on and painted, dragged around and look 10 years older, but to Hux, they are his comfort and he can’t have a day without him. It’s certainly a well-loved toy.”

Starting school life

Starting preschool and primary school is an exciting milestone for all children, and children with Down syndrome are no exception. Importantly, although your child will take longer to learn, with the right support, high expectations and additional time, they will reach their potential. 

Hux completed the 3- and 4-year-old preschool program at the Koondrook Preschool. Early childhood educator Cassie Marsh and staff made adequate changes to help Hux adapt to the group, feel comfortable and provided a safe environment, especially as Hux required extra assistance by staff. Cassie played an essential role and often went beyond the call of duty, dedicating her own time to attend meetings, complete reports and became involved in his physiotherapy and speech therapy. 

Hux’s physiotherapist from Echuca, Rebecca Cladingboel, has been working and helping Hux since he was 6 months old and has done enormous amounts of work. Both Rebecca, Cassie and the team played a huge role in Hux transitioning as smoothly as possible from preschool to primary school.

During Huxley’s time at Koondrook Preschool, Cassie applied for a Kindergarten Inclusion Support worker to be part of the team, and this is when Mandy Champion stepped in and filled that role. Kirby and Ben were relieved and excited to hear Mandy would then continue to assist Hux into his primary school years, which has helped Hux’s transition immensely. Kirby noted that knowing a familiar face is there with him brings less anxieties, and said they have formed a wonderful friendship, which has grown into trust and comfort for him. 

Mandy helps Hux in so many ways, from ensuring he is comfortable when he isn’t able to verbally tell anyone, nappy changes, applies physio and speech recommendations into daily activities and gets involved in his meetings so she has the best understanding of how she can help and assist Hux and help him grow. 

An added bonus is that the Koondrook Primary School is on the same grounds as the preschool, so leading up to transitioning, they were welcomed and encouraged by the school to detour through the school on their way to preschool. This was to familiarise Hux with the environment and classroom before he stepped up into prep. 

Leading up to his first day, certain things needed to happen to prepare the school for Hux’s needs and the changes it may need to make. School principal Amanda Bradford and the school warmly welcomed Hux, and knowing the family wanted Hux to attend the school from early in his life, they were able to make extra efforts to ensure a smooth transition. Research consistently shows that children who attend mainstream primary school are at an educational advantage and make greater progress across all areas. 

Meetings, reports, assessments and a lot of different evidence were relevant so the school was able to get funding required for necessary adjustments, including a disability toilet with change table, ramp access to classrooms, as Hux physically tires easily and is unable to walk up steps independently without the risk of falling, and funding to ensure Hux is safe in the yard as he isn’t aware of safety boundaries or hazards. 

For Kirby, Hux’s first day of school was a very anxious one, especially not knowing how he would mentally and emotionally adapt to school, the routine adjustment, the new faces, and the thought of him thinking she’d dumped him there and left him made her want to sit in the carpark with binoculars. But she also described the day as exciting for everyone. They were excited for this step in his life and attending the same school as his doting big sisters Islah in Year 6 and Mila in Year 5 Knowing he would be making friends and be looked after by staff and peers was also comforting. 

Hux’s school days at this stage are from 9am-1.30pm as he tires easily emotionally and physically, which suits him well. Hux’s classroom teacher, Mrs Meek, is a pleasure, a beautiful natured teacher who has gone beyond the call of duty and even incorporated a safe and quiet area for Hux to rest.

If you could get an insight into how day one seemed for Hux, it would be described as a little confident boy boasting with excitement (Woody in hand), strutting down the school path like he owned that school, with his big sisters taking a back seat. Hux was giving high fives to all the kids on the way to the classroom like he was the king. A few months in, Hux is still loving school and has become very popular with everyone wanting to play or simply spend some time with him. Hux has been assigned two Year 6 boys as big buddies, Tommy and Noah, and they were pretty chuffed to have been given the job. Each day, he’s asked how school was, with the same response: “Gool fun!” (School fun.)

What is Down Syndrome?

The human body is made up of trillions of cells. In each cell, there are tiny structures called chromosomes. The DNA in our chromosomes determines how we develop. Most people have 23 pairs of chromosomes in each of their cells (46 in total), however, people with Down syndrome have 47 chromosomes in their cells. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as Trisomy 21. 

Often, people with Down syndrome have some level of intellectual disability, such as some characteristic physical features, increased risk of some health conditions and some developmental delays. They also have areas of strengths and other areas where they need more support, just like everyone else in the community. Down syndrome is a genetic condition, not an illness or disease. It is nobody’s fault. There is no cure and it does not go away.

World Down Syndrome Day

World Down Syndrome Day (WDSD) is a global awareness day held on March 21. The 21st day of the 3rd month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. On WDSD, wear your silliest, mismatched, colourful or craziest sock so that it will be noticed. The idea is to start a conversation, so when people ask you about your socks, you can tell them, “I’m wearing them to raise awareness of Down syndrome.”

Encourage inclusion and acceptance

It is important for Hux to be included in many things to give him the opportunity to become more independent and continue to blossom. For anyone with Down syndrome, it’s of significant value to a community to include and accept them, because it gives the family support and it encourages the community to think a little further for a change and inclusion to happen.

As for you, Master Huxley Hall, I think we should feel blessed to have you in our community. You and your family have taught many in your path empathy, compassion and to love everyone. Keep lighting up rooms with your smile, giving out free cuddles, and a reason for your community to educate themselves further. Hux, you have a happy life ahead filled with adventure, and a blossoming future. 

If you’re on Instagram, pop on and follow along with Hux’s adventures@huxley.t21, and why not give them a tag with your silly socks for WDSD.

See all the pictures in the issue.

The Koondrook and Barham Bridge Newspaper 16 March 2023

This article appeared in The Koondrook and Barham Bridge Newspaper, 16 March 2023.

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