Moving Forward – The Physical and Sensory Activities for JB

From the moment I knew I was expecting another baby, I was determined that he or she was going to flourish in every way within my control. Why make it harder for your child, if you could make it just a little easier.

I used the concept of epigenetics during pregnancy (see my blog on Epigenetics) to kick-start this process.

When JB was born, some local experienced mothers showed me how to exercise JB by moving and bending his legs whilst laying down. He seemed to enjoy this. I also looked into baby massage and began an evening routine that only fully developed after I took him home from his surgery at 6 months.

Knowing that touch provides valuable stimulation for the brain, this became an essential part of the routine. I enjoyed giving him a gentle all over massage after his bath every evening. I would then give him firm pressure on his joints following the bone, working from his fingers up to his shoulders, and then from his toes up to his knees. This is known as ‘deep pressure tactile therapy’ and aids fine and gross motor development. Thanks to Kay Ness for this guidance and information. I would repeat this therapy during the day as well when I changed his nappy singing to him the whole time.

A quick word on massage. The benefits are numerous and we know thus far that it stimulates growth hormone release, feel good hormones, bonding hormones, it promotes sensory awareness and improves muscle tone.

On a short break to Tobago the following year, I met a wonderful Reflexologist from Canada who seemed to connect with JB and he to her. She gave him a relaxing reflexology massage on his feet and the following day gave me a workshop on it. So this was added to our bedtime routine.

I added to this facial massage and stimulation to focus on the speech muscles by lightly tapping my forefinger and middle finger tips from his mouth across his upper lip and on his chin up to his bottom lip.

JB  was a little delayed with sitting up unaided so we took him to an Occupational Therapist. She told us that his muscles had sufficient strength to enable the next physical milestone to follow soon and didn’t see a need for any follow-up sessions unless the skills were delayed for much longer.

When JB began to crawl, I aided his movements by moving his arms and legs forward in the correct pattern. I had read about a young man who was told that his father would never walk again after he had suffered a stroke, and the son was determined that he would. So he took him outside in the garden everyday and began with crawling movements. This basically develops the mapping in the brain until it becomes a capable skill. So soon enough JB began to crawl alone. I let him crawl as much as possible and 7 months later, JB was walking. Luckily living in the Caribbean enabled alot of barefoot wondering, and as JB loves the outdoors, there was much underfoot textural stimulation as he ventured out and about in the garden.

JB had and still has alot of energy and loves to move around as much as possible. Every evening before his bath, we would go out walking. We walked and walked until he didn’t want to walk anymore. During this time, JB also enjoyed his new tricycle and climbing equipment and especially his swing, which he would have stayed in all day if I allowed him!

The tricycle was for the most part something to push around or to be pushed around in. He eventually was able to pedal a little but his legs were too short for consistent peddling so he didn’t establish this skill at this time. The climbing equipment was his second favourite activity and he quickly learned to climb to the top in just seconds, over and over. JB essentially enjoyed using all his physical toys including the see-saw which I equally enjoyed every day. During this time we also joined a swimming group. When JB turned 2, I started other physical activities with him as recommended by Glenn Doman.

I set up crawling tunnels using chairs and his favourite book as a motivator at the other end. We also started forward rolls and hanging, holding onto a bar. I also introduced walking on an imaginary bar which was really just tape stuck to the ground. All this was hard work, but for the time being, manageable because it was fun. That was until JB decided he didn’t want to do any more crawling or bar walking, so we continued with everything else.

We also continued to take our evening walks and increased the distance. JB additionally enjoyed a once weekly gymnastics club for toddlers and loved using the trampoline. I was concerned that JB was not able to jump and this was a wonderful exercise for him to learn some of those skills and experience the sensations.

During this time, JB’s schedule looked something like this:

  • 8am-Fruit
  • Patterning
  • walking
  • 8.30 – breakfast
  • Reading – Self-Voice (A.R.R.O.W.)
  • Boxes, cylinders
  • NUK brush
  • face massage
  • crawling
  • forward rolls
  • snack
  • patterning
  • walk/run
  • 12 noon – Lunch
  • books
  • sleep
  • 2pm – smoothie
  • books
  • climb
  • walk
  • patterning
  • 4pm – Dinner
  • boxes
  • music
  • books
  • walk
  • milk
  • bath
  • massage, joint pressure, face massage, reflexology

This schedule was actually less rigid than it looks and I was more guided by what JB wanted to do at any given time within a set of choices and what I felt would suit his mood at a particular time. It was a good guide and helped me to remember the activities.

As I’ve mentioned in my previous blog, these schedules changed all the time, so I may have worked with this one for a few days.

To address JB ‘s other sensory needs, I made sensory boards using various textures, patterns and finishes that I found in cheap costume jewellery shops using large bangles and earrings.

To address JB’s sense of smell I taped up small tins that I punctured with holes in the lid having inserted cotton wool with drops of essential oils; a different aroma in each tin. Much of the day JB explored the outdoors; nature provides rich multi-sensory experiences  and by making children aware of the details in this invaluable resource awakens them to notice and discover more and more.

Today JB loves to listen to and experiment with music both by watching musicians play and trying musical instruments himself. His favourite music to date is Vivaldi’s ‘ Winter’. I introduced this piece to him after reading some positive reports and research that this aids listening skills.

We have moved on from this in the past year as JB now is in full-time nursery and many of his needs are met. However I still provide for him the physical and sensory experiences he needs at this stage by listening to him and continuing to listen and learn from others.

Thanks for allowing me to share this with you.

Cornelia x

P.S. Happy Down Syndrome Awareness DAY! and join me in my next piece on Speech and Communication.


Education and Schooling for my JB- The hopes, challenges, solutions and blessings

After JB’s surgery and our return to Trinidad, one of the first things I did was look into his future educational needs. I got the general message from other parents of children with T21 that there were no suitable schools or provision for our children.

I was determined to find a great school for JB. I discovered that many children with special needs went to special schools where they were considerably underachieving being only partially literate if at all and lacking an all round balanced approach.

This is not a critisism of those who own and manage the schools, the schools are considerably underfunded and on the whole, the private school fees were not very high; therefore there is difficulty with accessing the high quality resources and training that is so desperately needed.

However, I remained optimistic. I eventually came across a Montessori School and researched extensively on the Montessori system. Feeling happy with what I had discovered, I went to visit the school and the Principal was enthusiastic to have JB start the following year at 2 years old. The 1:1 issue was discussed and she was happy for me to stay intermittently with my daughter who was taking a year break from education and looked after JB when I went to work. Wow, I had done it! I found a wonderful school for my JB.

The following year I went to the school to register JB as guided by the principal the previous year. To my great devastation I was told that their policy towards 1:1 had changed and that they cannot accept him!!

I spent the following months driving all over the district visiting other private Pre-schools in a desperate and almost fanatical frenzy, determined that there must be somewhere for my JB. I did find one lovely school, but they already had 2 children with T21 and they said they couldn’t accept any more. That was the last school on my list. I had exhausted all possibilities. 

I started looking online; reading research publications, blogs about homeschooling and various educational methods. I invested in some resources, did more research and started educational programmes at home. I tried techniques recommended by Glen Doman as well as Montessori and other more mainstream techniques and lots of trips to the beach! Lucky for me JB loves books and lying in a hammock, so we spent long periods every day reading. A Cat in the Hat was his favourite and we read and read and read. Alongside all this we continued with the much loved Self-Voice sessions as practiced in the A.R.R.O.W. Learning System.

Life was good. It was hard work but it was working. After a few months though, JB began to resist the learning schedules. I must have re-written the schedules at least a dozen times to keep it effective and interesting but also to find the exact stage of learning for JB. JB’s wilful personality turned our days into battles of gentle persuasion that became totally futile. He just refused to continue!

Then came the hardest decision I ever had to make. Find JB the education he needs back in the U.K. The decision was a long one that I wrestled with. The eventual plan was heavily immersed in the faith that I had to exercise in order for it to work. This meant leaving my husband and teenage child and going it alone. Four months prior to leaving I enrolled JB into a special private school with an emphasis on Montessori. Here he learned the very important lesson of detachment.

The timing of the move was crucial. I still had clients that I was working with on the A.R.R.O.W. Speech Programme that I had to close off. Nevertheless, there began a slow close off and a gradual transition in my life and that of JB.

We arrived in the U.K. on a chilly morning early in January and despite my optimistic plans for JB sto start nursery the same month, he didn’t start until April. The wait was worth it.

Inclusion was the number 1 priority for me and this was finally achieved.In addition were excellent resources, well trained staff and loving support. We decided for JB to stay in nursery until the following year, so that he has more catch up time before starting more formal education. After the second week that JB first started the nursery, he exibited newly learned skills; dressing and undressing were the most dramatic ones. The nursery teacher plans his learning carefully from week to week to take him to the next level which his key workers follow. JB has weekly goals and plans which are reviewed and rewritten every Friday ready for the following week.

The SENCO really helped us out when we first arrived by kick starting the provisions and she continues to provide much needed support. These have been the blessings. JB is very happy and he is realising and enjoying his progress. He has come so far with his independence, understanding, appropriate use of play materials, social interaction with peers and staff, communication, concentration and following instructions.

JB’s brain is waking up a little more each day. This is the education he needs at this time. I know there will be new challenges ahead, but we celebrate his achievements today and we pray for more tomorrow. We will face those challenges as they arise and find the solutions.

What have I learned from this part of our journey? That sometimes our plans take time to materialise and it’s usually for a good reason. That we must try to do all we can to make them happen. That our children feel happy and connected with their main caregiver and generally happy and loved as they learn. And finally, to change a situation if it is not working, staying hopeful and optimistic.

Please journey with me in my next blog on what we did to assist JB’s physical and sensory development.