I’ve heard it said before that a mother always knows best, but I don’t think I understood what that fully meant until I became a mother. My Instinct as the Mother of a Child with Special Needs…
From the age of 1, I knew that there was something different with the development of our sweet Ryan. He was very repetitive. He didn’t start walking until he was nearly two years old and TV never caught his attention.
There were subtle things that could be explained away, but deep down I knew something was wrong. At the community drop-in centre, I’d voice my concerns but each time I was told it was nothing to worry about and kids grow at different paces.
At my church, people would always tell me, “boys take longer.” Although all of the advice was well-meaning and meant to put my heart at ease, I didn’t listen.
I was both anxious and sad. On the outside, my son didn’t look like he had a disability, but I learned that some disabilities are not always visible to the eye.
I slowly turned from feeling worried and uncertain about our son’s future into a mother bear! I spent a lot of time reading and researching and the more I read, the more I knew that I had to take action and push to be heard. But my cries went unheard by my GP. He said the same thing: there is nothing wrong with him.
An Ongoing Battle to Be Heard
Finally, l I found an article about speech delay in boys which led me to a woman that I credit for fighting incredibly hard for my son to get us to where we are today.
Her name is Liz, and I immediately wrote to her. We had a consultation call and this was the beginning of our fighting journey for our beautiful son. Hiring Liz was the best decision we made as a family. It was definitely very expensive as we had to pay weekly for consultations but it was worth it.
She wrote a letter on our behalf to our GP to request that without fail Ryan should be referred to the main hospital for tests. We had to wait for three months to be seen and this was the beginning of countless hospital trips. Over the last two years, Ryan has had MRIs, all different types of scans, audiologist appointments, and more.
I remember the first time we took him to the hospital, they had to put him under so that they could scan him. He cried so much that he peed on my husband while they put a cannula in him. When they took Ryan, I remember sitting on the floor crying so hard. I have never felt so much pain. I kept apologising for putting him through it.
Following his tests, when we were asked to go and see him, I hugged him so hard and vowed to never stop fighting until we got him the necessary help.
When his results came back, we were told he has a condition that is so rare he is only one in ten kids who has it. It’s called Cavum Septum Pellucidium which involves a gap/space in a key part of his brain. According to his speech therapist, Liz, when it is a rare condition, it is difficult to know how the condition will impact a child’s development including their speech and language skills. It’s also difficult to know what the long-term prognosis will be.
Ryan presented with global developmental delay and the condition affected all aspects of his language development including his attention, listening skills, and speech but he has a unique IQ which is still a puzzle. He has difficulty understanding and expressing language skills, so each of these areas has to be addressed. It also meant that he would require long term therapy and progress would take time.
Ryan required intensive and frequent therapy to address these issues. For therapy, we teamed up with the hospital and school so they could implement the advice and strategies provided.
The Unique Needs and Challenges of Every Child
Each individual is affected in different ways and there is no cure. However, for our Ryan, this is how it presented itself—a set of nuances that put him on the Autism spectrum.
Autism spectrum disorder (ASD) is characterized by impairments in social communication and repetitive behaviors, which often include altered responses to sensory inputs.
Ryan has a severe speech delay that at one point required both him and us as parents to learn sign language, however, through extensive therapy (both private and under NHS) Ryan no longer requires sign language.
Getting him into regular school was difficult for us. We had to write letters and provide supporting documents to the council to explain that he should be allowed into a regular school with a slightly modified education plan.
Thankfully, he was accepted! Even as we have small wins, we have a continued battle ahead of us. It was only during the lockdown that we managed to get him his education plan after fighting for it for 3 years. It originally came with the condition that he change schools, but again we fought, knowing how well he’s doing at his current school and how disruptive a change of that magnitude can be to his routine.
The most amazing thing about his condition is that while he has repetitive behaviors and speech delay, his understanding of things is very advanced. From the age of 3, he was doing puzzles meant for age six years old and up. He is now doing 3D puzzles meant for ages 10-30 years old. He loves maths so much and he is now into the Rubik’s cube.
Ryan is such a beautiful and sensitive soul. He’s very independent, organized, kind, and funny. He has been blessed with beautiful friends at school. He has low concentration on things that are not patterned so TV and screen time are not something he takes interest in.
Navigating Special Needs Among Friends and the African Community
We’re waiting for more genetic testing, but as we continue to navigate these waters, I find it incredibly helpful when my friends and his treat us like anyone else. Believe it or not, many people try to talk louder to him like he doesn’t understand and some of my friends have asked me if he is really sick, because externally he doesn’t have the apparent special needs that others do.
It’s difficult to explain something complex that we don’t always fully understand and over the years, I have noticed that Ryan often speaks less as a way to protect himself. He’s quiet because he doesn’t always know how to express what he’s thinking or feeling in words. People look at him on the outside and don’t understand the development delay or challenges.
It’s always important to remember that not everything shows on the surface.
I’m native to Africa although I live in the London area. When it comes to disabilities and mental health, it is taboo to talk about these issues in the African community. Some speak to Ryan like a baby and say, “don’t worry, you will talk.” Sometimes, he looks at them and me with a strange face like, “what is wrong with them!” When we’re alone, I sometimes tell him I don’t blame him for giving them a funny look!
Many children with autism across Africa stay out of sight for so many reasons, but there are few child psychiatrists who offering training and support on the autism spectrum. Also, because of cultural beliefs and the stigma for disabilities, they’re often hidden away. Most people with autism spectrum disorder in Africa live in low and middle-income countries, yet almost everything we know about ASD comes from higher-income countries. Thankfully, there are some charities that are now working to bring awareness to various communities.
Through our journey, I learned that as much as information is available, it isn’t always readily available unless you fight for it. You have to keep knocking on doors or keep reaching and when you finally get it, it can take so long to get answers. My son has been lost in the system yet I realize how incredibly privileged I am to be in the UK. It’s an advantage and yet I’m constantly thinking about those in my home country and throughout Africa. If we sometimes struggle to cope, I often wonder how they are coping.
Some Insight and Tips from Our Speech Therapist and The Angel Who Fought Alongside Us, Liz
By the time Ryan started school his language skills and his ability to express himself had significantly improved and the school was well equipped with appropriate strategies in place to support Ryan.
The use of visual aids significantly helped. It was key that Ryan received therapy in the early years from the age of 3 1/2, before he started school. There is much evidence to support early intervention which improves long term outcomes for children with speech and language delay. Ryan was lucky enough to receive this because of the time and support we were prepared to invest in ensuring Ryan received the best possible support available.
There is an increasing number of independent therapists now who can offer support and advice at this difficult time when the NHS service is particularly stretched and under-resourced.
The Community Trust in the UK is always a very informative and helpful site: https://www.thecommunicationtrust.org.uk/media/33693/misunderstood_es_version.pdf
For parents navigating speech delays, Liz had these wonderful tips to share:
These tips have been taken from the “Talking Together” book sent to me by Liz. If you’d like the pdf version, you can download it via the link listed below.
Making My Son a Priority As a Small Business Owner
As a destination wedding planner who often travels the world, I make sure Ryan is my priority. This means that—although unheard of—he is often in my client’s contracts. If something happens to Ryan, I make it clear that I will need to be there for him and will arrange my second-in-charge to take the reins until I can return to my duties.
This also means that sometimes he travels with me when he is out of school. He’s now obsessed with planes and loves to build with legos while flying (which seems like the last thing a parent would want to bring, but he keeps the pieces together and they occupy him for hours).
I will continue to fight for Ryan, but most importantly I will continue to work hard and do what I love, because I want to show him that we only have the limitations we impose on ourselves. I want him to know that nothing is impossible unless you decide it isn’t for you.
God has a purpose for all of us and sharing these raw topics on my community blog isn’t something I take lightly. I want to be true to who I am and what I believe. I want to marry my passion for the wedding industry, travel, and creative entrepreneurship with my passion to encourage others who may be experiencing the same kind of struggles I am.
Life is beautiful and full of blessings, but it’s also full of hardships and challenges that are easier to get through when we have each other and are willing to listen to one another.
If you’re currently parenting a child with special needs, please know you have my love and support.
Download the “Talking Together” book for more tips on how to help babies and toddlers learn talking skills using the links below
I hope reading this blog has been helpful to you! For more information contact Love From Mwai Experiences
October 21, 2020