Raising Children with additional needs – Oyinkan’s Story.

Meet Oyinkan

Oyinkan is a Super mum of 3 wonderful Children and my childhood friend. Shortly after she had her twins, I remember feeling hurt because I felt she was not keeping in touch. It was not until I had a conversation with my mum (of blessed memory) that I realised why, and I can`t describe how petty and silly I felt.

Please read Oyinkan’s story – in her own words…

My name is Oyinkan Kalejaiye and I am a Mum of 3 boys with additional needs.Yes… you read that right – I have been blessed with 3 sons and all 3 have additional needs.

Oluwaseni is my first son, he is nearly 14 years old, he was diagnosed with Type 1 Diabetes in May 2017. Type 1 Diabetes is an auto-immune medical condition where the body’s immune system attacks and destroys the pancreas which is the organ that produces insulin in the body. Nobody knows why this happens in certain people, it isn’t linked to lifestyle or life choices and like a lot of auto-immune conditions, there’s nothing anyone could have done to stop/prevent it. 

After Seni I had my identical twin sons, Oluwatoni and Oluwatosin, they are nearly 11 years old now. The twins were born early at 33 weeks and the first few years of their lives were full of different diagnosis, too many hospital visits/stay and a massive invasion of our family life by all sorts of professionals.Toni and Tosin were born profoundly Deaf, the profound bilateral sensorineural deafness is also linked to problems with their eyesight, on top of that there were feeding problems, breathing problems, problems with mobility, some neurological disorder and this is just to list some of the medical conditions they’ve had to cope with since birth.

Is this how I planned my life? No. Has it been easy? Definitely not. Do I feel blessed and privileged to be a Mum to my sons? Absolutely yes. Have I always been this positive and accepting of my life as a parent of my sons? Honestly…No. My journey to acceptance of this aspect of my life has been the greatest experience of my entire life till date.

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At what point did you realise there was something wrong?

I knew quite early after we got home from the hospital that there was something wrong with the twins however nothing could have prepared me for what was to come. The issues started coming up one after the other, for example, they weren’t responding to any sound whatsoever, one of them was breathing very loudly and strangely, feeding them was tough because they had really bad reflux, to name a few things I noticed. In the end, they were under the care of 4 different hospitals including Great Ormond Street Hospital for Children for about 4 years of their life. They are now under the care of 2 hospitals including Great Ormond Street. 

Seni is a very sporty, energetic and happy child. Hardly ever ill, for the first 12 years of his life he never went into a hospital for anything, hardly ever visited the GP. April/May 2017, he started complaining of tiredness, extreme thirst so he was drinking a lot of water, peeing a lot too. He is quite a slim boy, has a naturally slim build but he looked thin and sickly. To be honest, I didn’t pay attention at first when he started complaining because I took a lot for granted and felt I had ‘paid my dues’, after all, my experience with the twins is a whole lot of payment, isn’t it? I mean ‘Seni is never ill’, ‘he is my healthy boy’, ‘nothing can touch him’ – these were my thoughts as I told him to rest more, go to bed early, play less football/other sports, drink less water so he would pee less. Unknown to me, he was showing and experiencing classic symptoms of Type 1 Diabetes – Thirst, tiredness, frequent visits to the toilet and weight loss. It took a mad dash to the GP one Monday morning in May 2017 when I found him struggling to breathe and in a terrible state to confirm the diagnosis. He ended up spending 4 days in a hospital, I nearly lost my son – I will forever be grateful to God that he is still here. He is now insulin – dependent for the rest of his life. He is currently on 4/5 insulin injections a day to keep him alive.

How did the boys’ medical issues affect you and your family unit?

To be honest, my experience as a parent of children with additional needs tore me apart at first. The experience challenged every aspect of my life – everything I thought I knew as a human being, a woman, a wife, a Christian and as a Nigerian has been challenged to the extreme. My faith and ‘security’ have been dragged through fire. It hasn’t been a pleasant experience and I definitely wouldn’t recommend it.

However, what could have destroyed me has certainly brought out the best of me. I am such a better version of myself now and I am grateful for this. My marriage and family went through hell and back because of the challenges – marriage didn’t survive; the breakdown of a marriage is a massive challenge on its own. There are no words to the describe the feelings I experienced when I was in the depth of it all – it has been a very lonely and difficult journey for me. I have learnt to depend on God and to be incredibly self-motivated. I have learnt to be my biggest cheerleader and trust in the fact that ‘I am enough’ and God is with me.

Thankfully my ex-husband and I are now in a good place regarding our relationship as parents to our sons. I have also been blessed with a few people who have prayed for me, believed in me, stood by me and encouraged me. I’ve learnt that in life all you need is a few good people in your corner and that’s ok. I’m grateful for these people, some of them are professionals, some family, some friends, some strangers – they have all in their own way made the journey less painful and difficult.

How has it been raising the boys over the years?

I am grateful that despite the challenges I am managing to raise very happy and well-rounded boys. We have come a long way however I have always had a solid vision and goals regarding raising my sons. Goals may have to be adapted, steps towards achieving them changed but the vision remains the same. For example, one of my goals is for the twins to communicate effectively so I had to learn British Sign Language and I started to sign with them at an early age which has been really invaluable to the overall achievement of our communication goals. 

The twins are doing well despite everything – they had an operation at the age 2 and were implanted with bilateral cochlear implants. Cochlear implants give the boys access to sound when they wear the external processors. In the course of this journey we have had to deal with speech and communication delay, problems with social interaction/behaviour, learning delay/difficulties to name a few however currently they sign extremely well, speak well, interact well, some of their health issues are resolved and the rest of the health issues are managed and controlled. They attend a specialist school for Deaf Children and are doing well in school. It has taken a whole lot of hard work, determination, mental/physical/emotional exhaustion to get to where they are today – I am thankful to God for an abundance of grace and strength.

Seni is still a very happy, sporty and energetic boy – one of the first things I told him following his diagnosis was ‘Seni, what has happened to you is extremely unfair and sad however you are only 12 years old, you are too young to spend the rest of your life being a victim to this. Despite of this challenge, you have to live your best life possible. Don’t let it hinder you, adapt and carry on living’. It took time to get his head around things but I’m happy that today my son is taking my advice and living his life to the full. The presence and management of Type 1 Diabetes in his life is a ‘nuisance’ he has to deal with all day, every day however he is choosing to live and thrive – I am so proud of him.

Do you work? If you do, how do balance that with raising a family?

I’m a law graduate and practiced law for a while however nowadays I work and volunteer in different roles supporting people and families going through crisis, difficult situations, and challenges. I work in schools, I work/volunteer for charities and other agencies. I have found my life’s calling through my experience and I am so passionate about it. It’s hard work but extremely fulfilling and rewarding. I give a lot and I also learn a lot from my job and volunteering positions, I am always amazed at how resilient human beings can be in the midst of great adversity. My work is an outlet for me – for me, it’s a form of self-care.

I am a single parent – I have been on my own since my boys’ father moved abroad 6 years ago. It’s tough but I make it work by fitting everything around the boys. I’ve had to stop work for a while, change jobs and do whatever it takes to meet the needs of the boys adequately. I work term -time only. One thing I try and prioritise now is my own self-care as well, I can be very child-focused and not pay enough attention to myself but I’m working on creating a balance now.

Life as a parent of a child/children with additional needs can be challenging however it can also be fulfilling, rewarding and bring out the best in you if you let it. My boys are a huge blessing to me and I feel truly blessed to be their mother.

Advice for parents of children with additional needs.

• Whatever the challenge life throws at you – go through the emotions, don’t resist it, grieve, cry, be angry etc… take time to feel the emotions. It’s not being weak, it’s actually being strong and human. You are allowed to be sad, angry, confused, disappointed and frustrated – don’t let anybody tell you otherwise. Unresolved emotions and emotional baggage do a lot of harm to us mentally, physically and psychologically. 

• Next step is don’t stay broken, don’t stay down, pick yourself up – embrace your new situation, make it your ‘friend’ and get to know it. It’s a new experience, it may be unwanted but it’s here, so familiarise yourself with it.
• Get information and educate yourself about the condition/situation/challenge. There is a lot of information out there, find the relevant ones, the ones that will empower you and give you a good understanding of what you’re dealing with, explore different options available to you and how best to manage it.
• Try not to hide away or isolate yourself (the urge is usually very strong, try and resist it). Find, access and engage with the right support. Peer-to-peer support through people who are in your situation or have gone through it in the past. Mentors – people who have ‘been there, done that and gotten the trophy’. Professional support – engage positively with professionals, do what is required of you, work with them proactively to get the best out of the service they are offering. Professionals play an important role.
• Have a clear vision for your life/your child/relationship – have goals, be flexible and adaptable because there will be a lot of things out of your control but stay with the vision. 
• Children are extremely resilient beings – acknowledge their challenges but try not to limit them, continue to support and empower them, never lose hope. I am learning that regardless of the challenges, the possibilities remain endless which is why we have to keep our options open and be open to new opportunities, ideas, information, and knowledge. 
• Self Care is so important, I can’t stress it enough – I learnt this late and I have had to deal with the consequences of neglecting myself, worrying too much, not sleeping well, isolating myself, not speaking out early about certain things and bottling things up etc… TAKE CARE OF YOURSELF, you matter, you are a priority. As a parent, one of the greatest things you can do for your child is to take good care of yourself. Take time out often to unwind and just be. Find time to do the things you love and enjoy. Be intentional about this. If you are part of a couple – take time out and nurture your relationship, it is so important.
• Everyone’s life journey is different – trust your journey, embrace the process of living your life and love your fate.

Advice for people on how to behave/relate with families with additional needs Children

The key word here is ‘EMPATHY’ – put yourself in their shoes, treat them how you would want to be treated. Treat their children how you would want your child/children to be treated. Always be empathic, be patient and be supportive. If you don’t understand something, ask. If you’re curious, ask. If you’re concerned, ask and seek clarification – don’t make assumptions and try not to be judgemental.

The amazing mothers like Oyinkan and Tope that share their stories on this blog do it so that it can be a source of encouragement to others struggling through the same or similar situations. They also do it so that together we can all build a wall of support around each other.