When your baby has a disability, small triumphs mean the world
When Jackson was born I thought he was the most beautiful boy I had ever seen. I had no idea that there was anything different about him, and nothing during his first few days gave any reason for concern.
He was a few days old when I noticed he seemed to have feeding difficulties, he would splutter and choke and didn’t seem to be swallowing much. I spoke to Plunket and my GP on multiple occasions, bringing it up again and again as I knew in my gut something was wrong, but I could not get anyone to take me seriously. We already had a 2-year-old so had seen what was 'normal'; Jackson wasn’t doing the things Scarlett did at his age. He could barely drink any milk, he seemed weak and floppy and he was unusually happy – he barely ever cried.
I took him to hospital when he was 3 months old with bronchiolitis. The doctor on duty barely looked at him and was not interested in my larger concerns, she told me it was to be expected that he wouldn’t want milk when he was sick and tried to send him home the same night. I insisted that someone take a proper look at him, I refused to leave and kicked up quite a fuss until the doctor very reluctantly agreed he could stay overnight and be seen by a specialist the next day.
In the morning after an examination the specialist agreed that something was not right. A videofluoroscopy showed that he was getting liquid in his lungs – hence the bronchiolitis. The hospital fitted him with a nasogastric tube and we were shown how to feed him using the tube before we were discharged under the home care nursing team.
* My daughter's 'a different type of perfect'
* The mother of all jobs - raising a child with complex health needs
* Parenting an intellectually disabled child: life forever on duty
* The silent victims of disability issues
Learning about tube feeding and caring for his nasogastric tube was scary. He would often pull the tube out his nose and we would drive him to hospital and wait hours for it to be replaced, sometimes twice in one day. My partner learned how to do it himself after a few months, though replacing his tube was awful for him. Over the next few months he was assigned his own speech language therapist, neurodevelopmental therapist, dietician and nurse to monitor his development.
I felt so isolated; all his equipment and his schedule meant leaving the house was so hard and I often didn’t bother. He wasn’t meeting his milestones and I wondered if it was something I had done. I googled different conditions endlessly, stopped sleeping and could barely think of anything else.
We got the diagnosis after a genetic test when he was 9 months old, a few days before Christmas. Jackson has a deletion in chromosome 15, the gene missing meant he had Angelman syndrome. Angelman syndrome is a complex genetic disorder that is characterised by delayed development, severe intellectual disability, difficulty coordinating movements and a happy excitable demeanour. Most people with Angelman syndrome experience seizures, extreme difficulty sleeping and will either be unable to talk or only manage a handful of words. Some will eventually learn to walk, while some are unable to and require a wheelchair.
His diagnosis was hard on me. I knew something wasn’t right, but you always hope you are wrong and hope to find out that he is just lazy, or having difficulty with a few things. To find out definitely that your baby boy is going to be different is indescribable, all the things you wanted for him seem to vanish before your eyes and you mourn the life you wanted for him.
I experienced fear like I never had before and I became obsessed with his future. I ran through all these horrible possibilities in my head over and over and could barely function. What if he never had any friends? What would happen when we die, would he live in some horrible group home with people who might not be safe? Who would look after him and love him then? What if someone is hurting him and he can’t tell us, and can’t get help?
I don’t think these thoughts and worries ever go away, they just fade into background noise and you don’t hear them as often. I still worry about these things occasionally but have learnt to put them aside and focus on more constructive things to help Jackson have the best life possible.
Jackson is beautiful. He is an absolute joy, pure sunshine and happiness. He is affectionate. He is challenging. His laugh is magic. His triumphs mean the world to those who know him and he has an army of admirers. He has a unique way of looking at the world which has taught me a lot, he finds joy in any situation and everything is an adventure to him. His sister loves him to bits and he thinks she is the most amazing person ever. He is determined and resourceful. I cannot imagine life without him, and I can’t imagine him any other way.
We can’t talk about the good without talking about the challenges, and there have been many. Our life will be forever changed, there is no sugar-coating that. We had to sell our house in Clevedon and buy a house closer to the hospital and family for support. We have so many appointments and Jackson is so often sick that work became impossible. I gave up work to care for him full-time so we are down to one income. He has hours of therapy, it takes a long time to feed him and he will not be able to live independently.
He is 18 months old now so my journey is only beginning, but here is what I have learned so far:
1. Trust your instincts. You know if something isn’t right, if you tell someone and they don’t listen, tell them again and tell someone else if they still don’t listen.
2. Be a warrior. Having a child with special needs means you will need to fight for them your whole life. Learn to be their advocate and stand up for them and yourself, nothing will come easily and you need to be able to get them what they need.
3. It’s OK to not be OK. Some people are of the opinion that you should go from diagnosis to acceptance immediately, but that isn’t everyone’s journey. It is OK to grieve what will never be, to be upset by the lot you have been given. My partner got the diagnosis, shrugged and carried on being his usual loving, supportive self. He was of the opinion that “Nothing has changed really, he is still my son and I still love him and I will always look after him”. His amazing attitude made me feel like the worst person, because I was not at that point - yet. Everyone reacts differently, which brings me to my next point…
4. Be kind to yourself. Don’t expect too much of yourself, give yourself time and space to heal and be OK. Get support, accept help and know you wont feel this way forever.
5. Be tolerant. Some of the things people said to me were unintentionally hurtful, such as “Only the strongest people are given children like this because they can cope”, like my child was being punished because I was a strong person. The reality is that no-one knows what to say and they feel they need to say something, they don’t mean to offend or upset you. Let it slide off you and see it for what it was – an attempt to show care, concern and support.
- Stuff Nation