Life throws at you at its will some people feel they get more shit than others. I feel there is a balance and whatever it is will make you stronger or tip you right over the edge!
I always say to the kids you get what you get and don’t get upset and by no measure can I be upset that I was given Kodi a child who has autism! I have said since Kodi was born that she was the child sent to test my seemingly perfect, organised she can do it all way of parenting and that she has. Often we were told Kodi has been here before she knows the drill this time round she is just doing it in her own way.
Over the past few weeks people have reacted in different ways when being told Kodi has been diagnosed. Some sad and sympathetic like she has lost a limb or has an incurable disease that will kill her by the time she is 5!
Others supportive asking questions that some maybe afraid to say out loud. Giving knowledge or advice and just saying “She is still Kodi”
Some people have found it difficult and trust me if it’s that difficult you better leave now as I we can’t hold anyone else up!
Other ASD/SEN mums have reached out to me as it’s a journey we can all relate to a journey that is tough and a journey that often needs fight! For this I am grateful 💜💙
I feel relieved that finally we can move on…. I’m not deluded it’s the beginning of a long journey however it’s also the end of one. Any parent with a child with a condition knows a diagnosis can be a long gruelling process.
First someone has to think there’s a problem, then that person has to convince others there’s a problem (This could be parents themselves) parents then have to get their own heads round said problem and convince others friends family etc Friends and family will use the word normal 100 times and then the fight continues. This is before even seeing a specialist and then everyone involved has to convince the specialist theirs a problem because there is no blood test no walk in a straight line just boxes to be ticked with behaviours that are different!
I’m happy that I can say Kodi has autism rather than Kodi is awaiting a diagnosis of autism and she’s about 150 on the list and probably will be seen spring 2020!
Before I was happy I was in a sad dark place of no hope and almost like a loss for the child I could have had that would not struggle with life’s challenges. I struggled with how I didn’t smoke, breast fed solidly for a year and gave this child the best possible start in life…..
I battled with the fact that she wouldn’t be like other children and achieve what they could. I was baffled by how she met all her mile stones early crawling before 6 months walking at 10 months and clung to the fact she was potty trained at 2!
I soon snapped out of that and remembered that as Kodi’s mum I am her main cheerleader. As Kodis mum if I don’t believe in her how can anyone else! As Kodi’s mum the fight will always be there and if I don’t have her back how can she hold her own!
I then decided to be positive and with positivity comes light. So now if something big happens I want to tell the world because you don’t all see hers I’m her guide and will tell her story. You don’t have to like just scroll past if my “My child is doing” photos and posts bore you! The truth is these lift us up and are often things I never thought she would be able to do!! Each day we take small steps but we are actually climbing mountains.
Kodi struggles with sleeping, eating, currently has restless legs often lacks iron, can not concentrate is easily distracted, struggles socially, has speech delay, squints, needs to feel pressure on her body, is often in a day dream and oblivious to what’s happening around her, she currently can’t have her arms uncovered, sometimes has anxiety and ocd behaviour and is prone to meltdowns from all of the above. Which to the uncommon viewer may see it as a tantrum! Specialists are also concerned she has a small head! A small head which hasn’t grown in almost a year. I think her head is cute and we all know she grew into her ears so let’s hope a small head is not a big problem.
Kodi needs routine, structure, to be told and reminded consistently what she should be doing and should not. Kodi also needs patience, guidance and understanding from those around her.
Kodi is also a little ray of light in our lives she is the most beautiful little girl who grows in independence daily. She has the cheekiest smile and has us laughing daily by her quirky ways! Kodi is different and different is good sometimes I wish I could join her bubble and not be bothered by what’s happening in the world.
I don’t want people to change the way they treat Kodi if she has been naughty she needs to be told off. If she is having a meltdown she needs support and if she is struggling with the day she doesn’t need people in her face! (And nor do I)
I want people to know she has autism so they can be mindful of some of the ways she may react in situations.
I guess as we embark on this journey we are learning and everyone else is learning with us too. So if you have a question and are not sure that’s ok….
P.S Thanks to those friends and and family members who have provided us with advice and support.