I Grieved For The Mum I Had Planned To Be

July 2, 2015

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.

Jesse's first day home from hospital ... so much hope, love and excitement xxx

Jesse’s first day home from hospital … so much hope, love and excitement xxx

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.

Me and Jesse at MovieWorld for my  Birthday this year xxx

Me and Jesse at MovieWorld for my Birthday this year xxx

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.

16 Comments

  • Reply Toni Pfenning July 14, 2015 at 10:56 pm

    Thank you for sharing your story! My son has autism and we’ve been through everything you’re writing about.

    • Reply Kelly July 15, 2015 at 2:31 am

      My pleasure xxx Thank you for taking the time to comment. How old is your son now?

  • Reply Cherie July 15, 2015 at 10:26 am

    What a wonderful piece. I have recently written a piece very similar, but not quite as succinct and with as much dignity. I look forward to reading other pieces from you in the future x

    • Reply Kelly July 16, 2015 at 12:30 am

      Thank you so much Cherie x I have just visited your blog site and it is beautiful, your boys are gorgeous 🙂
      I’m about to make a cuppa and head back over to really check it out.

  • Reply Kathlene July 19, 2015 at 11:15 am

    Beautifully told Kelly. Easy to read the raw truth in your story with hope for other parents going through this and to assist family/friends who want to help but don’t know how. Thank you xx

    • Reply Kelly July 22, 2015 at 12:45 am

      My pleasure Kathlene xxx Thank you for your kinds words, that’s exactly what I am trying to achieve…support and awareness.

  • Reply gavin July 20, 2015 at 3:30 am

    Hiya I came across your page from you liking a picture of my little monster. Thank you for sharing your honest point of view on how you felt with Jesse’s diagnosis. Very honest. We are still waiting Kalebs full diagnosis. They wouldn’t commit to a definitive answer as he is developmentally delayed and that’s obscuring things. I know where your coming with the grief side of things as well as yours husbands side. We were told kaleb wont develop beyond the age of 18 months. He’s 4 and he’s my world, my life and my goodness he’s a whole lotta fun. Again thank you for sharing.

    • Reply Kelly July 24, 2015 at 12:42 am

      Hi Gav 🙂 It was so great chatting with you the other day and I love your blog http://whirlwindkaleb.blogspot.co.uk/. Its so great to hear from a loving, dedicated Dad, Kaleb is a lucky boy xxx

  • Reply Terri July 23, 2015 at 9:19 pm

    Hi Kelly. Thank you for sharing this. My son’s story is very, similar to yours. We are 5 now and being examined by doctors although I always knew something is wrong. We didn’t get the diagnosis yet but all leads to it. The first years of his life I was ranning from one doctor to another shouting for help , they wouldn’t listen thinking that I’m a crazy mother. That wasn’t the case I was just open and seeking help for Allen. At the age of 3 I took him to child psychiatry and 3 specialists told me he is developing as an avarage 3 year old although he could say only 5 words and threw tantrums a couple of times a day, well the list can be continued. Now my son is social, almost no tantrums , says more words , communicates with me , kisses , hugs , is happy to see me when I pick him up from preschool , wants to sleep only next to me , things I was waiting for so long. I know how hard it is although I knew something was up for a long period of time now but still … Tears are always there … I’m sorry I can’t any longer for now. Thank you so much

    • Reply Kelly July 24, 2015 at 12:16 am

      That’s beautiful, thank you for sharing Terri. Comments like yours make it all worthwhile for me and help other parents so much xxx It is such a frustrating and emotional time and even though every child on the spectrum is different and unique, the journey we take as parents is so similar. I’m so glad you are at this stage with your little man now, the struggles make those little wins so much sweeter xxx

  • Reply Kelly July 24, 2015 at 12:54 am

    This is great info. My son is 2 and I have a suspension he may be mildly autistic. Yet know one believes me. He has maybe 10 words, has trouble in social situations, has meltdowns throughout the day, puts his fingers in his ears if it gets to loud and likes to hit and be self destructive when he is frustrated. He will literally run head first into a wall as hard as he can. I will continue to fight harder for my son to find out the reasons for his behavior. He is my youngest of 4 kids and this just doesn’t seem normal to me. This post is wonderful, because everyone looks at him and sees him on his best behavior, they don’t see him 24/7 through all the meltdowns and temper tantrums. I finally don’t feel so alone

    • Reply Kelly July 24, 2015 at 2:57 am

      Thank you Kelly <3 That sounds exactly like our little boy at that age. Continue listening to you heart and going with your gut, it can only be a positive thing for you, your son and your family. You sound like an amazing Mumma and I'm so glad you were able to connect with me xxx

  • Reply Kriss July 24, 2015 at 1:49 am

    Thanks so much for sharing your heart Kelly. My son who is 4 was diagnosed with autism (PDD – NOS) this past April and I went through a grieving process and still do. Its nice to know I’m not alone. It’s a journey – a hard but beautiful one with hidden treasures along the way. 🙂

    • Reply Kelly July 24, 2015 at 2:59 am

      Couldn’t have said it better myself Kriss xxx We are definitely not alone and I’m so humbled to be sharing with such an amazing, strong community.

  • Reply Jennifer Costa July 24, 2015 at 2:34 pm

    Thank you for this. It’s comforting whenever I read that someone is sharing a similar experience.

    • Reply Kelly July 24, 2015 at 10:28 pm

      My pleasure Jennifer. Thank you for taking the time to comment xxx

    Leave a Reply