As children with RTS experience some form of delayed development in their mobility, here is Aara’s development journey from 5 months – 3 years of age.
Concerns with the doctor
At 5 months Aara was finally seen by a paediatrician. We had been waiting for 2 months for the appointment, as we were extremely concerned with her reflux. The consultant started to ask me lots of questions about Aara’s mobility (which I was not expecting as I came in to discuss her reflux). The doctor asked me ‘can she roll over?’, ‘does she lift her arms?’, ‘does she lift her neck?’ etc. Based on our answers, he then advised us he was going to refer Aara to be seen by a physiotherapist.
The Physio
A few months later Aara was back at the hospital meeting the physiotherapist. Over the next few months the therapist and I focused on Aara being able to sit herself up from a lying down position. The physio showed me techniques and exercises to encourage Aara to lift herself. The technique I was taught to use was to hold her by her hands and to make sure she was pushing herself up (so she would be doing the work rather than me pulling her).
Once Aara mastered sitting up for a long period of time, we moved on to how to make Aara turn her body into a crawling position i.e. positioning herself on all fours. The physio showed me, by moving her legs and manipulating her body to turn. Then we focused on manoeuvring her body whilst staying still in a crawling position to crawl by moving either forwards or backwards. After the focus on crawling we moved on to her standing - that’s when we worked on trying to get Aara to cruise whilst holding on to furniture. We then moved on to squatting and eventually taking her first step.
The journey started at 8 months, with her finally taking her first step in October 2018 when she was 2 years old. It took Aara at least 9 months from when she took her first step to fully master walking independently and more frequently.
We were advised by so many different parents to purchase different types of toys, these included toys that lit up/flashed, toys that made sounds, played music or cause and effect toys. Nothing worked, the only thing that kept Aara motivated was her bottle of milk and the iPad where she loved to watch her favourite TV show. I remember the physiotherapist saying please make sure you bring those two items to every session throughout Aara's first year of physio so we could work with Aara whilst she was actually motivated.
She is now 3 years old and still needs support when climbing up and down the stairs, manoeuvring her body whilst on a chair or the sofa. We have been taking her for walks and purposely not taking the buggy as she always wants to sit in it.
Although achieving Aara’s movement took time and dedication, her determination and strength was clear to see and made us so proud.
Occupational Therapy
At 1 year of age, Aara was referred by the Physiotherapist (PT) to an Occupational Therapist (OT). I remember the OT joined our PT session to assess Aara. Aara was referred to an OT, for one of many reasons. She didn’t have a pincer grip, she was not able to move a toy from one hand to another, she was not able to clap, she was hardly interested in any toys, she couldn’t bring both her hands in the middle of her body to play with a toy simultaneously. But as soon as our session started with the OT, Aara’s toy collection had changed. I started to buy a variety of toys which were going to help her refine her fine motor skills, this included posting, pushing, pulling, sticking and messy play. The OT also advised us to introduce different textures even if Aara was not fond of them i.e. grass, sand, paint, foam, porridge mixed with water, rice and lentils mixed in water.
It was all a disaster to begin with as I tried everything at once, Aara was so overwhelmed and every time I went near her with a new toy or new texture, she would burst into tears. I therefore toned it down and introduced a new toy or a new texture each week. This helped me build her confidence via introducing new items in a more phased approach.
Soft Play
I remember I took Aara to a play date at a soft play centre. She was just under 1 and at this point was still not able to sit up for more than 1 minute at a time as she would flop back to a lying position or whinge till she got comfortable. I absolutely hated that experience. Aara was not co-operating at all, there were so many kids screaming, she did not like the texture of soft play mats, and she was not happy from the moment we got there. I remember I came home and cried because I couldn’t understand why she was so unhappy at the time.
I didn’t return to soft play till Aara was about 15 months and I made sure I went with Abbas and it was just the three of us. Aara still hated it. However, I persevered and began to attend weekly. I would start off playing in the under 18-month section which was a very small section, which had a small ball pit and some toys, disco lights and few soft play frames to climb up and down with a small soft slide. Aara would just sit there and cry and whinge. I remember we sat there for 20 minutes weekly and gradually it increased to 25, 30, 35, 40 minutes and then finally to an hour. After a few months of constant coaxing Aara started to engage with the toys and engage in the disco lights and throw the balls into the ball pit. When Aara crawled she began to enjoy it a bit more, however we still were not able to climb up and down the slides or move to the under 5 section.
We continued to attend soft play as well as swimming on a weekly basis, as the PT advised us these were good sessions to try out the therapy techniques. Gradually Aara started to increase the time we spent at the soft play centre, she began to climb up the ladders herself and wait for me eagerly at the top so we could sit together to go down the slide. She also eventually was able to crawl through a tunnel which took immense amount of persuasion through bribing her with rice cakes or with the iPad. And finally one day – Aara climbed up the ladder herself, climbed on to the slide (she managed to manoeuvre her body) and she slid down the big slide herself.
Keep Going
My advice to all is keep at it, everything with our kiddos takes time. I noticed that it takes Aara a while to adjust to something new i.e. new table and chairs, new person, new toy, new routine – but she is adaptable too. I wanted to be able to selfishly attend play dates where my child would enjoy soft play rather than cry the whole time. Today Aara is nearly four years of age and I still need to go up and down the slide, climb the climbing frames, go through the tunnels and jump into the ball pits with her to keep her motivated and engaged but with much less persuasion and now I finally can grab a coffee for 10 mins at the soft play centre and watch her play by herself independently (this does not last very long at all but it’s a starting point).