normal

I commented on my facebook this morning about being exhausted and frustrated by the 'special needs' life and would love some 'normal' and I find it interesting that people comment about there being no normal etc, but you know what there is a normal and people who have it take it for granted!

Normal is when your child doesn't spend 10 mins screaming and punching themselves in the head because a lego piece wont fit, normal is your child being able to complete a sentence or a mouthful of food without a tic taking control of their body making them sound like they are choking to death or coughing up their lungs, and of course being stared at by passers by as they do it! Normal is a child who can attend school without endless phone calls from the principal, liasing between support staff and doctors, funding meetings and being excited when we get through one day without a drama! Normal is not having to endure a meltdown everyday in winter because your child has sensory issues and doesn't like jumpers. Normal is a child who knows how to have a 2 way conversation and not just tell you reams of useless facts, who can actually interact and play with people.

These are just a few tiny examples that may give you a picture of what our 'normal' is. On our last visit to the neurologist he asked me a question for statistical purposes about how much time is spent during our day dealing with Jaden's rituals, routines etc in order to prevent meltdowns, I laughed!! Um we spend all day making sure things are running smoothly the way he needs to try and keep some form of calm, how on earth could we time that, it's just our life???!!!!

I love my son but I am exhausted by him and that's just the truth! When there was only him I guess I didn't notice so much, but with a very active 10 month old (who yesterday discovered she could slide the back door open and head out to the verandah, all in the space of 10 seconds while I was getting a drink!), who is also still waking at night, and being pregnant as well I am just so tired all the time and don't have the energy that I used to have so I am not coping as well.

My only option right now is to just keep leaning on God, to sit at His feet as He keeps reminding me to do cause otherwise I would just cry all day. My devotional readings the last few days have all been so relevant, about God caring for our children even more than we do and about God's faithfulness, I have to trust that because otherwise I would be consumed by worry for the future, how will Jaden cope with high school? how will he ever be able to hold down a job? (I particularly thought of that after watching an episode of the comedy 'Big Bang Theory' when the character Sheldon, who reminds me so much of Jaden, told his new boss that he was smarter than him, got fired and then couldn't understand what he did wrong) Will he ever be able to understand a relationship and get married? I don't know the answer to any of those questions but God does and that will have to do, afterall he made Jaden and he understands the nuances of his 'special' brain far better than I ever will. That doesn't mean that it's not hard though and I guess it always will be hard and sometimes I just need to vent and tell people that without cliched responses!