Today is Ethan’s diagnosis anniversary, last year I wondered if it was going to be a milestone I marked on the blog. Today I feel the need to do this again. It’s not really a date I feel needs to be celebrated but I feel at times, in those low moments that can creep up on you out of no where, it’s good to remember how far our superstar has come.
From the little boy who couldn’t say a word and was walking along the lines on the floor in the doctor’s office, to the boy who had his eyes tested last week without lashing out. He has come so far but I know there are so many more hurdles to overcome.
So what have we learnt over these past three years?
Guilt, it never goes away – I feel terrible guilt over Ethan’s diagnosis, feeling like I’m not doing enough, feeling that I’m pushing him to hard, feeling that I’m not giving him enough attention when I’m trying to fit in life around two children. You name it I feel some form of guilt, it’s a feeling I can’t shake. I think it must be a mum thing, perhaps a generation thing, or even a social media guilt. But add in those special needs and you feel like you are drowning in the guilt.
Anxiety, you have to live with it – Ethan suffers from anxiety, he has terrible anxiety around children he doesn’t know. Started by the bullying incident, I hope it will improve as I hate seeing him freeze on the spot in fear. I now suffer from anxiety, it’s a terrible feeling and has brought on full-blown panic attacks. I know what triggers my anxiety and unfortunately I have no control over it. This is another feeling that I will learn to live with.
Team work – it takes team work to go out, I still haven’t been able to leave the house on my own with both children. Add this to the guilt list! Team work to get through the day, a team of people at school, teams of people in the dentist, you name it we need a team of support.
Routine – routine is very important and we quite like our routine. It makes the days easier. We do like to push Ethan out of his comfort zone with days out, changes in the routine as you can get pinned down to a routine. Sometimes mixing it up can be stressful but it’s all about learning those life skills.
Visuals – visuals help in planning and changes to routine. We should use visuals more than we do but preparing them can take time.
Communication – this is so much more than speech. My dream three years ago was for my little boy to be able to talk to me. I’m pleased to say the words are slowly coming, we are miles off of being able to have a full-blown conversation but we have gained some very important words over the past few months. My little boy can now vocalise ‘Good Morning Mummy’ when I come down in the mornings. To you it will still sound like unclear, baby talk but this is so much better than the silent greetings.
Meltdowns – these aren’t fun and normally are just saved just for me. I have worked out that holding Ethan tightly for as long as required can help to calm him down. I hate seeing my little boy so unset, and sometimes over something that is so small and really shouldn’t be so upsetting but to him it will mean the end of the world.
School Holidays – I love having Ethan home at the holidays but the lack of the routine and his need to keep busy is really thrown out in the school holidays. Hopefully this year will be better as we will have hopefully learned from last years mistakes.
Respite – this is important for all of us as a family. I’m slowly letting go of the guilt attached to admitting that sometimes we all need some timeout from each other. This helps us all recharge and enjoy our time together more. I’m hoping we will be able to get more respite days in the future.
Sleep – I can’t remember what it is like to have a night of unbroken sleep. From 11 months old Ethan has needed us in the night. We have had to accept that this is just a way of life for us now. We have also had to accept that sometimes tablets are needed to help settle our son, bring out the guilt again, but you have to do what you have to do.
The future – the major cause of my anxiety. I worry about my son’s future at least every day. What support will he need, who will provide it, where will he live, will he be looked after, will he be happy. The fact of the matter is we won’t be here forever to look after our beautiful boy. The biggest gift I can give him is to teach him how to be as independent as possible.
Behind the diagnosis and all of our daily stresses and worries there is a beautiful little boy, our little superstar.
The boy who made us a family. The boy who taught us that love is unconditional. The boy who taught us never to give up, no matter how much paper work is required and the battle involved. The boy who keeps trying, is learning new things every day and still has the ability to surprise us more than we ever knew possible.
The boy who has taken us on one hell of a journey and who we wouldn’t change for the world.
Different, not less. Our superstar, our Ethan.