Why Should You See a Practitioner who Specialises in Trisomy 21? {guest post}

I have loved watching the growth in Gabi’s passion for learning about the intricacies of the biochemistry of Trisomy 21, and how to support it health wise, since she had her beautiful daughter. Gabi has always been so generous in sharing her extensive knowledge within the DS community online, and I am grateful for her writing this guest post for us.

If you have a child with Trisomy 21 (T21) and are consulting a naturopath practitioner for your child’s health, there are two simple reasons why it is more beneficial to see a practitioner with specific knowledge of this trisomy:

1) The unspoken connection; and

2) Trisomy 21 biochemistry is complex.

The Unspoken Connection

img_9871Increasingly, naturopathic practitioners who specialise in T21 are often parents or relatives of people with T21. They may have witnessed similar health problems and used natural therapies for their own loved one to avoid medical interventions where possible. They also may have been through the same highs and lows as we have: the stress of learning the diagnosis, the side-ways glances at the supermarket trolley, the sleepless nights spent in ICU, hearing someone call your loved one a ‘Downsie’. It’s sad but true that these experiences create an unspoken connection.

The unspoken connection means these practitioners understand how much you want your child to achieve their full potential in life. Practitioners specialising in Trisomy 21 are often more aware of your child’s needs:

They understand your child’s unique health requirements and are qualified to write letters to your GP/Paediatrician in support of your decisions i.e. requesting a reverse T3 test, or switching thyroid medications.

They can advise which drugs are better tolerated during surgery e.g. Methotrexate is a folate antagonist and toxic to children with T21.

They understand nutrient and drug interactions and can advise which supplements to avoid or continue pre- and post-surgery e.g. fish oils and Vitamin E should be stopped three to five days prior to surgery as they are potential blood thinners.

T21 practitioners can recommend supplements to support your child’s immune system prior to vaccination, as well as support your child through detoxification post vaccination.

They can provide unbiased information on vaccination and support your decision to vaccinate or not. They may be trained in Homeopathic Prophylaxis, a safe and natural form of immunisation, should you choose not to use other forms of vaccination.

A typical appointment with a naturopath may include recommendations for genetic, biochemical and pathology testing and assessment of results. They will advise you which supplements can improve results and recommend supplements that are of high quality, and free from fillers and heavy metals.

Specific complementary therapies can be recommended to support your child’s optimal development. These include Neurodevelopment, Osteopathy, Chiropractic or other techniques with known positive effects, so that you can invest your precious time and money on only the best possible treatments.

They can support your child’s emotional and spiritual development by recommending yoga, qigong, bach and bush flower essences and essential oils. Overall, their approach to treatment will be much more specialised.

You should feel comfortable requesting this information from your practitioner. It is part of their job to provide it.

Complex Biochemistry

Trisomy 21 is described as a complex genetic disorder, as four hundred and seventy seven genes are attached to the 21st chromosome. Having a third chromosome means that these genes are expressing themselves 50% more than a typical gene. Having too much activity in certain genes creates imbalances in a person’s biochemistry as the genes which aren’t over-expressed are having a hard time keeping up with the ones that are!

A typical practitioner may not understand the basic biochemistry which underlies T21; genes are over-expressed and several areas of biochemistry are out of balance as a result.

They may not be aware that particular supplements are effective at regulating the over-expressed genes and balancing the biochemistry. This is known as nutrigenomics – a targeted approach to health which balances genetics. T21 is a chronic degenerative condition which may decline without nutrigenomic intervention.

Practitioners who do not specialise in Trisomy 21 may not be familiar with diseases associated with T21, such as Hashimoto’s Thyroiditis, and may not know to order such tests as a thyroid auto-antibody test to confirm the extent of the problem.

They may prescribe doses of supplements that are inappropriate for people with T21, who generally require tiny doses. They may recommend amino acids like cysteine, methionine and phenylalanine which are inefficiently metabolised in those with T21 and should be avoided.

If they aren’t up to date with methylation research, they won’t be able to support your child’s health effectively. Supporting the methylation cycle can improve immunity, particularly in relation to leukaemia and autoimmune issues.

They may lack awareness of effective reflex therapies for people with T21 such as Cold Laser and MNRI, and may not be able to recommend suitable support groups for families with a child with T21.

Many parents have sought advice from practitioners who aren’t familiar with T21, or who specialise in Autism and, unfortunately, they often leave feeling their time and money were not well spent. Practitioners who specialise in Autism often have specific knowledge of genetics, but lack the subtle knowledge which defines T21 from autism. There is no doubt, a naturopathic practitioner specialising in Trisomy 21 biochemistry is an asset to a T21 family. Even if you only consult your practitioner once or twice a year it will be money well spent and an investment for your child’s future.

20160607_163912Gabi Giacomin is a Naturopath (MClP (Comp Med) BHSc (Comp Med)), wife and mother of two beautiful girls, including one with Down syndrome, and she is passionate about helping people achieve optimum health. After taking time off to focus on motherhood, Gabi has returned to private practice in the Northern Rivers area. If you’d like to ask her any questions or make contact regarding a consultation, Gabi can be contacted by email or please leave a comment below.


Inspiration for a Creative Life {guest post}

I first learned of Alexis when her reputation for making the most magnificent cakes and creating amazing artwork preceded her. We have since been lucky enough to receive two beautiful pieces of art that Alexis has created, (one you’ll see below of a certain superhero) which prompted me to find out more about the story behind this beautiful creative spirit and mother. I’m so glad Alexis could share the inspiration for her creative journey with us. 

Inspiration. It is all around us. Defined as a force that makes someone want to create or achieve something, inspiration can be found in a place, a person or perhaps an experience. It comes in many forms and can translate into different meanings for different people. I believe our inspiration changes as we navigate our lives, it feeds our soul and fills our heart. On occasion, if you are lucky, inspiration will come along and change the course of your life forever.

My inspiration came crashing into my life about eight years ago.


I became a mother to one little boy who has kept both my heart and my hands very full indeed…but we will get to that.

I have always had a love for art and creativity in general. Drawing inspiration from colourful storybooks, my overgrown magical garden and my beautiful family, I was always busy creating something. From an early age, my favourite thing to do was take my Dad to the art supply shop, hand in hand…with his wallet of course! He was my biggest fan when it came to my art. I still have the very first pencils he bought me. A perfect timber box inlayed with gold lettering that sits pride of place in my studio today.

An inspiration in itself.

As I grew up my art remained a hobby that I enjoyed but rarely made time for. Inspiration for creativity didn’t seem to come anymore so other things filled my life. I travelled, I worked, I met new people and created memories I will never forget. Life went on.

On 30th June 2008, our son Jordan came into the world. It was not the happy day we all expected the birth of our first child to be and unfortunately we will never have that day back. It was filled with shock, devastation and denial. At birth, our son was diagnosed with Down syndrome. We were so young and, for that reason alone, it was so unexpected. Surely it couldn’t happen to us. We lived in a bubble for the next few months.


Jordan’s first surgery, open heart, was at 11 weeks of age. He made it through with flying colours, but those days in hospital felt like a lifetime. We focused on the day to day. Looking back, this chapter of our lives seems like a blur – just doing what we could to keep moving forward but struggling to find the inspiration to do so. I felt alone in our bubble. I would have done anything to take that extra chromosome away. I resented that chromosome and I was sure my life was ruined… how wrong I was.

A few short weeks, after leaving hospital, something unimaginable happened. My beautiful boy laughed for the very first time and I had this feeling that I hadn’t felt for years. Inspiration. I felt overwhelmingly inspired to live my best life and be the best mother I could possible be to this amazingly perfect child.


The first few years of Jordan’s life kept me very busy with appointments and therapy so, with the support of my incredible husband, I decided to give up my career in Real Estate. I loved my job and felt I lost a part of myself with this decision but I have not looked back, as nothing in my life has ever been more rewarding than being a mother.


Over the last eight years Jordan has become a big brother twice! Our girls complete our family and my children collectively have given me the inspiration to once again pick up a pencil and create. It feels amazing to pursue something I am so passionate about and something that gives me balance, sanity and enjoyment. I need that escape in my life!

img_4554 img_7537

img_4625Making a career from my art was something I never thought I would be lucky enough to achieve, but I found the inspiration to make it happen, or rather the inspiration found me.

Art to me is emotion on paper. I love to create what I feel in a way that evokes emotion in others and creates a connection between us. While I always loved the idea of throwing paint on a canvas, it turns out I’m no Jackson Pollock. I’m better when I have more control, so I love to draw. The rhythm and reliability of a pen has no equal. Watercolour is quite new to me but I have quickly discovered a joy that comes from experiencing the colours fly around the paper to create different textures, layers and patterns. Using these as collage alongside my ink drawings has become the style I am known for. While my black and white pieces of art are an ever growing collection, my original, one of a kind artworks is where my passion lies. To be able to create an original piece for someone that has faith in my ability, creativity and style gives me so much joy.


I am so incredibly lucky to have such a supportive family that give me the time to pursue my dreams while still raising three amazing children. Thankfully, I have my wonderful mum in my life and close enough to keep an eye on the wild one year old two days a week. This time is so precious so I dedicate it to commissions. It’s not easy to find the minutes to lock myself away in my studio, and more often than not you will find a toddler chewing on the off-cuts at my feet, but I wouldn’t have it any other way – my inspiration always around me and sanity (mostly) intact.

feathersInk On The Wall
is a collection of my work, both prints and originals. What started as a pleasant way to pass time has grown into a way for me to share inspiration with others. My passion lies in creating original artworks for people to love and I am always available for commission work. My ultimate goal is to work on a series of artworks and one day have my creations hanging in a gallery to be enjoyed by all. A long shot perhaps, but as they say, “a goal without a plan is just a dream”.

Open your eyes and your heart. To be inspired is to live.

Alexis is a mostly perfect mum of three beautiful children, and wife to one pretty awesome husband. Life on the stunning far north coast of New South Wales keeps them happy and when Alexis is not busy with the three little treasures, you will likely find her busy in her studio creating beautiful artwork, making magnificent cakes or hiding under a rock with a bottle of vino… or two. You can admire and purchase her amazing artwork at Ink on the Wall, or follow her on Facebook and Instagram.

One Day at a Time: Charley’s schooling journey {guest post}

Latasha and I first met in Melbourne, as we underwent an intense week at a conference together (one of the many we have attended for our children, as she mentions below) and were reacquainted at a more recent workshop. She’s a fellow Mum-of-three-boys and her love for all three of her sons was so obvious from the moment I met her. For those of us yet to tackle the school scene, I am so thankful to her for honestly sharing her experiences and lessons she’s learned along the way on her son’s schooling journey.

I am a mother to three gorgeous boys, two of whom have now left home. Tim is our 21 year old traveller who loves skateboarding and snowboarding and lives five minutes north of us, renting with his mates, studying at uni and working part time. Ramey is 19 years old. He is a skateboarder, and lives with his mates five minutes south of us, as well as studying at uni and working part time with his Dad. Charley is our 14 year old basketballer, dog lover and high schooler, who loves drumming, hip hop and performing once a year and is a great help in the kitchen. He also happens to have Down syndrome.

Charley has had a huge impact on our whole family. He has brought so much love to this family, as have all the boys. Even as the older boys stand at 6ft 4” and 6ft 2”, I still get my mummy cuddles. Charley has taught me patience, humour (very necessary in a household of boys), and how to slow down in life and he has also taught me to speak up! It is necessary to advocate for our children, and that has become even more obvious throughout Charley’s education.

Charley’s primary school years were mostly a happy, positive experience. The particular school we chose was well known for the extra support for kids with special needs which is what attracted us in the first place. The Special Education Unit, Prep and Grade One years were fantastic. Charley was reading well, keeping up with his peers, giving speeches and generally enjoying school. As the school was growing, so were number of children with special needs. However, the support did not increase along with the numbers. The teachers were under a lot of pressure. Charley was flying under the radar as he was compliant and his needs were not being met. He was going backwards.  After meetings, going over IEP’s, uncomfortable moments and irreparable relationships between myself and the main teacher, we left half way through Grade Three.

Soon after, we found a lovely private school of 200 children. There was no special education unit but support was offered in the classroom with kind and compassionate educators. This is exactly what we wanted. Charley loved this school and made lots of friends. In his final year at this primary school, Charley ran for Sports Captain for his sports team. He gave his speech in front of the school and received the loudest cheer for his efforts. He did not make Sports Captain but he did achieve the position of Sports Leader and supported the Sports Captains in all their duties. I wrote a letter of appreciation to the Principal thanking all of Charley’s educators over the years. It was very sad saying good-bye to this school and leaving our comfort zone when we moved towns to be with my husband, John, and closer to Tim and Ramey.

img_5674Charley and I were used to the older boys coming and going. My husband had worked away for six years, coming home every second or third weekend. After the older boys had spent time away from home travelling or studying, this year we are all in the same town again. It’s nice for Charley to have his dad home every night and we have a weekly family night which involves Tim and Ramey and girlfriends coming over for dinner and board games. We all love it. 2016 was going to be the wonderful year of togetherness, with everybody in the same town, Charley starting high school and my mother living only two hours away. I planned to take time off to help Charley with the transition into high school. We looked forward to this time for new beginnings, however it hasn’t been quite as rosy as anticipated.

I did my homework on finding the best high school for Charley. I made all the phone calls and decided out of the seven calls we would visit four high schools, of which one was independent, one private, and two state schools. We knew in our hearts the last school we visited was the one! The Head of Special Education (HOSE) was very approachable, we felt comfortable and Charley was very welcome. We heard about the support offered in all classes and lunch times and the skill centre, which offered modified maths and English programs with smaller groups. They had a senior program for Certificate 1 and 2 training in Hospitality and Agriculture. In our meeting, the HOSE used the terms “individual learning, open minded, keeping up the communication”. We were impressed with the inclusive approach. We were told we needed to be in the local catchment area in order to attend the school, so we bought a house in the catchment, put in our application to the school and Charley did his transitional days.

The final week of school in December 2015 was a whirlwind. Charley finished primary school and I finished my last day of work as a Teachers Aide in a beautiful little country school on 11th December. Charley’s concert performance was on 12th December and we moved house the following day. Then, in the early hours of 14th December, we received a phone call saying that my Mum had been taken to hospital in an ambulance. The doctors discovered mum had stage 4 lung cancer which had travelled to her brain. Charley and I spent the whole Christmas holidays by Mum’s side and in her little house. John came down when he could. We had my birthday, Christmas and New Years in hospital.

This was not supposed to happen. We had planned to go to New Zealand in 2016. Mum was going to show me where she was born and grew up, as well as show me where I was born and had my first few years. It was going to be a trip of meeting up with extended family. But Mum died on 6th February at the age of 70. I was numb.

Charley ended up missing four out of his first eight days of high school. I hadn’t even bought any books.  I managed to colour code and enlarge his timetable in the second week while sitting in the nursing home. The next week I covered his books in colours to match his subjects. Math was blue, English was red etc. This helped Charley to manage his own school bag and organise his books independently. I sent out emails to the HOSE, skills centre, admin to the skills centre and his Case Manager explaining Charley’s absences. I had also put a brochure together for all his teachers, plus HOSE and admin. The brochure explained Charley’s strengths and his best ways of learning. There was a hard copy for each teacher, which Charley wanted to hand out personally. Half of them came home. I asked the Teacher Aide to help Charley hand them out, but this didn’t happen. The Teacher Aide is our only means of contact, as we were asked to take Charley to the drop off point where the aide would be waiting each morning and pick him up at the same area in the afternoons. I emailed the brochures I’d created to admin, asking her to forward it on to Charley’s teachers. I had one response.

I quickly learnt that high school is a completely different place to primary school. For one, this was a large school with 2000 children. Most primary school teachers are happy for you to ask questions and volunteer in the classrooms. High schools do not seem to want parents around. Communication is done by email and the learning journal. I have learnt that the bigger the school, the more kids with special needs, which means more vocal parents advising the teachers of their own child’s needs. Some parents use a more confrontational approach than I do, and this can put teachers and aides on guard.

With this disappointing start to high school at an already difficult time for our family, I became discouraged. I was not interested in a lot of communication at this point. I was not in a good state of mind and I didn’t like the thought of seeing someone face to face anyway, but some of my emails were not being responded to and messages weren’t coming back in the learning journal. Verbal communication is generally done at the pick up with the aides, but some aides ask that parents email the teachers individually. And it hasn’t been possible to have parent-teacher meetings with all teachers. This school offers a meeting with one teacher (the maths or english teacher from the skills centre) for 15 minutes twice a year, with whom we can discuss matters from all subjects. At Tim and Ramey’s high school, we were able to have 15 minute meetings with every teacher two times a year! Not all of Charley’s subjects have been modified to Charley’s level. I noticed worksheets from Charley’s books were not even touched as they were at a typical Grade Seven standard. Charley was not even getting assessed for two of his subjects! Expectations from the teachers appeared to be very low for Charley’s education. I find the loss of control over Charley’s education so overwhelming. I was completely fine with Tim and Ramey going to highschool with minimal communication as they could communicate themselves, but it is difficult for Charley to tell me or teachers about his day and to express his feelings.

At the end of Term One, Charley wanted to have a gathering with some friends at the bowling alley. I thought this would be a good idea to work on making some mates for Charley and for me to speak to other mums. I spoke to Admin at the skill centre as well as one of the teachers, who also thought it was a good idea. We sent out 13 invitations five days before break up. Only one girl came, but she was already one of Charley’s friends. I later discovered teachers do not support the students with handing out invitations. This must be done outside around the bag racks at lunch time by themselves! All these students have special needs, so we weren’t sure if all the invites were received, or if they were taken out of bags or if parents simply didn’t respond or turn up. It was difficult to know what actually happened.

I investigated alternative schools in order to a find a small country high school who had those kind and compassionate teachers like in Charley’s primary school. I soon discovered it is impossible to find a small high school in a populated area. I felt that the schools I did check out would not be an improvement on our current situation. I could sense nervousness from the Principals and heard comments like, “Well, it would be difficult to support your child’s needs” and “Didn’t you know there is a special school close by?”

While I was becoming more and more devastated, Charley still seemed enthusiastic about school. He would be dressed early with his bag packed, waiting for me to get him to school every morning. Sensing his keenness, homeschooling seemed out of the question. I decided to write 2016 off as any kind of decent school year for Charley and wait to see what teachers Charley has next year. My husband is also disappointed with the whole situation, as well as finding it unusual to see his wife so down. Where was his strong, work-it-out, get-the-job-done wife gone? He knew I wasn’t prepared for a battle. Grief affects everyone in different ways. We considered buying a caravan and going on that great Australian trip we’d always talked about. We often discussed taking Charley around Australia between primary and high school, but it was difficult with John’s work to get away. Next year it might be more possible, but in the meantime, John suggested that Charley and I get away somewhere.

In Term Two, I booked a holiday for Charley and I to go to New Zealand. We flew into Queenstown, hired a car and travelled 3000 kilometres over 20 days across both the North and South islands. We stayed with our extended family, and were shown where my Mum was born and grew up in the south and then where I was born and had my early years in the north. We really felt the love and we were in no hurry to come back.


Unfortunately, when we returned to school, Term Three was not much better than our experiences in Term One. After emails and meetings and losing Charley in the school with another child, I have come to believe we are in a school with educators inexperienced in teaching students with intellectual impairment. They tend to manage behaviour through detentions before exploring prevention strategies.

In February, I attended a conference – one of many I have been to over the years that have discussed education, new therapies, etc.  At this particular conference, I asked the question, “How do we get through high school?”

The presenter responded, “One day at a time!”

I have decided I am not going to any more conferences. I know what has to happen! I just wish I could get Charley’s high school educators to go to these conferences, like his teachers from primary school would. I wish educators could be better supported in the school hours. Having children with Down syndrome at mainstream schools can be beneficial for all involved. Inclusion helps teach the other kids patience, empathy and leadership skills and, hopefully, when they are working adults in our community as teachers, doctors and in retail and other services, they will have the people skills learned through their younger years. I know we have come a long way in acceptance and inclusion but we still have a long way to go! It’s difficult when I have to waste my emotional energy on other people’s limited ways of thinking when I know how much Charley has to offer the world.

Now that we’re in Term Four, there have thankfully been some positive changes. We are now getting assessed for all subjects, Charley has been moved to a different Grade Seven class where there are less distractions and he has made two new friends. I am in the process of setting up a mothers support group for mums of children with special needs at this highschool through the SIPN network. I am also planning some time away down south with Charley. He learned so much travelling around New Zealand. He can navigate with Google Maps, work out times, distances and money concepts and he got up close to seals, tried new foods and wrote in a diary every day.

I am very proud of Charley. I love his determination, confidence and social skills. I know he will be independent in life with all the right supports in place.

And with our high school journey, we will just take it one day or one mental health day or one holiday at a time.

Latasha is a mum to three gorgeous boys, a spoilt golden retriever and a bossy tabby cat, and wife to a hardworking, supportive husband. She is a Teachers Aide by trade and a proud advocate for her son, Charley, who has Down syndrome.