I know that grief and mourning are usually words only associated with the loss of someone who has died but I went through a grieving process when I came to terms with having a child diagnosed with autism. In the initial months after Jesse’s diagnosis I was emotionally up and down like a yo-yo. I embraced wholeheartedly the new path we were to travel but I grieved for the mum I had planned to be. I grieved for the loss of the expectations and dreams I had for Jesse. I grieved for the loss of special milestones that parents of neuro typical children get to experience. And, as Jesse gets older I grieve for the emotional and mental connection that I imagined I would have with my son at this age.
I know it’s also hard for Kerry and as a dad he has struggled with his feelings too. Kerry doesn’t associate his feelings with grief the way I do, his are more feelings of anger and extreme frustration. Frustration with the delay and difficulty associated with the usual father son activities. Trying to teach Jesse how to play a sport or ride a bike is a much more delicate exercise than teaching a child without autism. Jesse finds it hard to take direction, accept rules and generally communicate. Jesse makes his own rules, plays his own game and we usually don’t have any other choice but to toe the line. Kerry continues to teach and encourage Jesse and I’m really proud of him because his determination is paying off and he is starting to have the experiences he dreamed of having with his son.
I feel guilty and selfish saying I was a grieving mum considering I have a beautiful, healthy son but it’s the truth and it’s what I went through. I want other mums and dads to know its ok to feel these things and its important for your own health to acknowledge and communicate these feelings with loved ones.
A couple of months after Jesse’s diagnosis, grief and guilt spiraled into depression for me and made me really sick. I was tired, lethargic and emotional and then the virus’s set in. I was a mess; I ended up with a sinus infection, a bladder infection and a liver infection. My immune system had packed up and jumped ship. After repeated blood tests we finally got to the bottom of it. My doctor said I was suffering from chronic fatigue brought about by undiagnosed coeliac disease. I went for the endoscopy which confirmed his suspicions. The doctor explained that I would have always had coeliac disease but sometimes it takes traumatic experiences to bring a diagnosis to light. My depression, fatigue and non-existent immune system all collided at once making me a very sick bedridden mummy for about 4 weeks.
I managed to get on top of my health and my depression by focusing on Jesse and our next step into early intervention. We have come unbelievably far in 12 months but it’s heartbreaking to still not be able to have a fluid conversation with my 6 year old little man. Jesse still gets extremely frustrated by simple tasks and instructions. He finds it very difficult to understand social situations and his frustration usually turns into a meltdown. He likes to explain these meltdowns as him turning into “The Hulk”. Jesse is a very literal thinker and doesn’t really process humour, sarcasm or any of the more intricate social interactions yet. It’s hard to explain to you exactly how our little boy is different to a “normal” 6 year old. Unless you live it 24/7, you just can’t understand the hopelessness or frustration you sometimes feel. Even our family and closest friends can’t really understand what it’s like to be a parent of a child with Autism. This is not a bad thing, it just is. They don’t need to understand, they just need to be aware. Talk to someone in your support network, make them aware when you are at your lowest point. The burden really isn’t as heavy once you share it.
I love my child like I never thought I could love anyone or anything. Jesse is such a sensitive, funny, thoughtful, entertaining little boy. His mind fascinates and excites me and my eyes have been opened to amazing opportunities and experiences for him and our family. He has made me a stronger, more tolerant person and as he grows, I do to. I would never want to change Jesse but there are bad days were I think “What if?” or “Why us?”. There are times I still cry for no reason, scream in frustration or shut myself in a quiet dark room to get away….and that’s ok. It’s never going to be easy once you’re on this roller-coaster and your child’s behaviours and difficulties are a constant reminder of those dark feelings of grief and depression. Listen to your body, watch for warning signs from your partner and look after each other.
For now, I’m excited about the new dreams and aspirations I have for Jesse. I’m excited and proud to watch him learn and reach his goals. And I’m excited about growing as a person, a mother and a partner. Jesse teaches me acceptance, patience and unconditional love and I know I still have a lot to learn.
It’s important to find your own path of acceptance regarding your child’s diagnosis and it’s even more important to allow to yourself to grieve, mourn, get angry, complain or feel sadness. Once you can move through these emotions you can start to really enjoy and build your connection with your child. As parents of a child with autism, we may have a harder time getting that connection but it makes the little wins and special moments that much more full-filling.