We are the du Toit family, a family of four of which Mira is our eldest.
Mira was born in 2015 at 39 weeks via natural birth. She was a birth diagnosis, and the doctor was very emotional, immediately picking up that she had Down Syndrome. She was the doctor’s first ‘surprise’ and the doctor’s reaction were very upsetting to us. She was thoroughly checked and had no health concerns, and we could take our little girl home after 3 days.
She was great at breastfeeding, and a beautiful restful child, being content watching and playing with her hands. She was a baby for longer than her little sister and now in retrospect we were so lucky to have that special time with her for so long
At 6 months she started having infantile spasms (west syndrome). Even though it was very subtle, her eyes would just roll, we took her to the doctor. We were told that Infantile Spasms are more prevalent with the Down Syndrome diagnosis. Her EEG scan found hypsarrhythmia. That meant erratic brain patterns. The treatment suggested was ACTH – a strong steroid administered every day for two weeks. It was a challenging time, with her crying non-stop. Luckily this first treatment plan worked and after an additional 2 years of epileptic medication she was cleared of any epilepsy. With West syndrome as it was diagnosed the child regresses and it did put Mira back, but we got through it.
Even though everyone tells you not to compare your child to others it was really hard when your friend’s child is already crawling, and you are still working on head stability. It was so tough, but we persevered, and she was walking at around 3.5 years.
We tried the normal route of different therapists and swimming but none of it we found were working for her or us. However kinder kinetics we found that she loved and it made her really strong with such a great posture – she continues to work with Cape Kinetics after 5 years of once a week.
Though she is delayed with speech, we noticed a big improvement in 2022 when she started her new school – a special needs centre where she is understood and embraced. She also started using the potty properly at the new school, after a few years of trying. We are unsure of whether we will continue with special needs or try mainstream, we will wait and see.
In 2022 we realized that Mira has sensory issues – she became very dysregulated with any noises like a boat humming (we live by the ocean so that was a constant struggle), little sister crying, garbage trucks, motorcycles etc. It was completely taking over everything to the extent that she could not play let alone learn stuff. We started the Tomatis program and have seen a significant improvement in her sensory processing as well as amazing progress with speech articulation and abstract concept verbalization. We realise that speech is one of the biggest issues as her capabilities are judged by her ability to speak. We work with an Occupational Therapist that guides us as parents vs her going for sessions. We try to set up her environment so that OT and sensory stimulation is constantly addressed – ie having a trampoline and swing, ensuring messy play, choosing toys that promote fine motor practice, and lots of imaginary play that helps with speech. Of course she loves the television, but we try to sit with her and discuss what is happening through the story – she seems to work though her own issues and challenges using the characters of the story. We find it very helpful for speech and getting her to do stuff like brushing teeth, washing hair, trying broccoli etc.
We established the MIRA (https://miraactivewear.co.za/) brand – a motorcross clothing brand is slowly growing and that we will use to celebrate our amazing girl.
Even though the first year was hard – more because of our own uncertainty, we are better for having Mira and we would not change a thing.
xxx
