Do You Know A Child Who Had a Rough Start?
In the first place, a Happy New Year to you and your family. And thank you so much for having contributed to my year 2019. Whether you worked with me, or brought your child to see me, came to my classes or workshops, read my emails or Facebook posts, engaged, shared, commented, spread the word, gave me feedback – it all made my year, fueled me, and gave me direction. I appreciate it a lot.
It’s very interesting when I think in terms of a decade. In the last year of the previous decade, my first child was born. Without him, I wouldn’t be on the path I am now. I wouldn’t have learned what I learned. I wouldn’t be helping others in the way I am able to today. How remarkable is that I finished my training just a few days before Alfred’s 10th birthday and opened my practice a few weeks after. This made me think of spirals and how often things don’t develop in a simple linear cause-and-effect way!
At the very end of November, I was invited to give a talk about the Feldenkrais Method® and the work I do to Waikato DHB Newborn Intensive Care Unit; many thanks go to Dr. Arun Nair and Regina Marais from The Neonatal Trust (Waikato) (if you have any chance to support these guys' work, they are doing the most amazing things for the families who need help during the most stressful time).
Working on this presentation brought back my many memories of ten years ago and I thought I’d share some of my thoughts as they might be helpful to the families who are facing the struggle now. So, if you know someone who does have a child with a rough start, especially in the beginning of their journey, please share.
What I am going to say below is a blend of my professional and personal experience, my 10 years of career and development as a mother of a child with special needs and my 4 years being in love with the Method. (None of this is to substitute a medical advice!)
My child had a stroke and underwent a life-saving surgery at only 40 days old: a bleeding in his brain damaged its right hemisphere. He stayed 9 days at the Intensive Care Unit and we spend another 21 days at the Neurosurgery ward. Of course, at the time I didn’t question any treatment: it mainly consisted of some kind of medication, and I had no idea what it was! Very little happen to prepare me for leaving the hospital: I remember the disorientation and the feeling of being lost; I was so much afraid to leave behind the place where my day was scheduled to a minute, food was provided and I was to follow doctors’ and nurses’ instructions. (Perhaps I have to say that it was not a New Zealand hospital and parents were treated differently there). At home, I had to start making my own decisions, going out to the world and organise my life with this child: I so wished I had a User’s Manual supplied along!
Somehow, I have always done a lot of movement-based play with my baby, since the very beginning. And we continued: these play times became a daily routine, created a kind of framework for our days.
Another major thing that happened soon: I learned about neuroplasticity. The idea that the brain can change, heal and create new connections gave me a lot of hope and another pair of glasses to see my child through. We continued to live our life as a normal family, containing the uncertainties deep inside.
The photo on the left was taked when Alfred was 4 months old, you can see that big scar. When he was two, an MRI of his brain was done, and the neurologist told us that about 80% of his brain was damaged on the right side. She also said that she’d never expect a child with this amount of damage to function at the level he did.
On the right photo he’s 7 and he’s doing something we hadn’t expect him to do: riding a bike. We discovered that this was a possibility by a pure chance.
He’s 10 now and still a very complex child, and the last year was probably the hardest for us in all aspects: his health, his education, his life at home... At the same time, his reading and writing made a big leap, he acquired English as his main language by this time (he also speaks Dutch and Russian to some extent), his judgements become more and more interesting, and his determination makes me envious.
I am telling all this to illustrate how much a vulnerable or damaged brain can do, and how much a child can achieve despite a very rough start. And below is my take on the directions to consider when you are just in the beginning of your journey.
Learn about how amazing our brains are. Learn about how they work, how they can learn, change and heal. Norman Doidge’s books The Brain That Changes Itself and The Brain’s Way of Healing are probably a good start for a bookworm. Michael Merzenich is writing on brain plasticity in his blog. Resources like Coursera have free courses on brain functioning and health. Stanford University has great lectures for parents, like Neurodevelopment of Preterm Babies and A Primer of Brain Development. Choose something that interests you and follow it.
It’s a long, long run. I understand that you’re dying to know your child’s future, and you want someone to tell you what to do to make it better, and you wish there was a guarantee supplied with every advice: the stakes are too high. Unfortunately, that’s not how it works. You need to prepare yourself for a long run with unexpected curves on the way. You will probably only know 20 years later what’s the outcome of your efforts.
Find your support team. Your family, friends, social support agencies, your doctors – you will need all their help. See your health providers as your support people: they are there for you. It’s up to you whom you’d like to see on your side: don’t hesitate to change providers if that's possible at all, or add providers that you need. If you already have a social worker, involve them into the conversations that might be hard. You won’t be able to do it all: your role is a team leader.
Be a leader, not a caregiver. We are constantly providing care and that’s what we are usually called: caregivers. In reality, while providing care, we need to shift our focus from care-giving to being a leader: leading our child, leading our family with special needs, and leading our support team. Researching, developing, strategical planning.
Ask questions. When navigating the world of medical interventions or various therapies, learn to ask questions. I love the BRAIN model: Benefits, Risks, Alternatives, Information, Nothing. You are in charge of this child, you know them the best, you will have to deal with their compromised health in case of a failed intervention, etc. Choose what’s the best for you and your family and stand on it.
Educate yourself. You’ll have to learn a lot. Schedule some daily slot for your learning and ask your family members of friends give you at least 30 min of peace to do this important job. When you take time to do your research and thinking, it makes your decision-making easier.
Don’t restrict your child’s movements. Ideally, your baby (and you!) will spend a lot of time on the floor. Think of car seats, highchairs, strollers, playpens etc. as movement-restricting devices: only use them when absolutely necessary. Play on the floor with your child and have a lot of fun!
Observe your child positively. Your doctors will speak the language of deficits: what your child is missing compared to a certain standard. That’s ok and you need to know that language to talk to your medical team and understand them. However, for your everyday life with this child, you’ll need to learn to observe their success and how clever they are in creating non-standard solutions to their difficulties. You’ll need to separate these two languages and modes of thinking, as some people use two pair of glasses.
Get help early. In many cases, early intervention is the best. Don’t wait till your child is one year old or older. In the very first months, even when babies apparently don’t move a lot, there are many things happening: the quality of these experiences will shape the quality of neural development. As soon as your doctor is ok with touch applied to your baby, you can start working with your child, using touch and gentle movements, or ask for professional help.
Learn proprioceptive touch and make sure there is plenty of it. Premature babies who received moderate pressure touch have shorter hospital stays, and your touch can be as effective as a therapist’s, the research says. Proprioceptive touch gives information to the child’s brain about the parts of the body available for use. While touching, imagine you’re touching your child’s bones through skin and muscles: lightly but clearly. Learn about the skeleton, imagine your hands are creating an X-ray image of it. Touch is especially important for parents and their baby if they were separated after birth and have to create extra bonding opportunities. These “touching” play sessions will cover many needs of both, you and your child.
Experience the developmental milestones yourself. Get on the floor and find out through your own experience, what does your child need for lifting their head, rolling over, sitting up, crawling and creeping, etc. Shava Chelhav’s new book Child Space: An Integrated Approach to Infant Development based on the Feldenkrais Method has several lessons for parents.
Movement is the language of the brain. We might see language as manifestation of cognition, but it’s through movement that we can first appreciate how the nervous system develops. That's why it's possible to identify neurological conditions like Cerebral Palsy within the first 3 months of life, based on the observation of typical early movements.
Testing rotational movements is another accessible way to help you evaluate your baby’s movement from birth. Through offering movement and touch we can access the nervous system and offer a change.
It’s a hard job to do this alone. I want to make it easier for you. I want to create a community of parents who share similar views: if that’s you, let me know.
I am also here to meet and speak about your child’s habilitation journey if you need my hand.