Today is the day I take my youngest son for an assessment to determine whether or not he is on the autistic spectrum.
This will be his 2nd assessment for the condition but this time he is being assessed in a different city by staff that are far better equipped, not only with time and passion but with extensive knowledge of Tourette Syndrome too. This assessment was not requested by me, this assessment was given as a must because of information received into the new service caring for Lewis.
Why is this knowledge so important when assessing my little boy for a different condition?
It is important because once you have been diagnosed with Tourette’s (which is hard enough in the first place) you will find that almost everything going on with you is put down to your tics. One example is, Lewis scratches his face constantly and bites anything he can this has always been put down to tics. Lewis’s diagnosis of Tourette’s was a completely different set of events to Spencer’s although a lot of conditions were missed on Spencer’s initial assessments all those years ago.
I have been ignoring the signs with Lewis for years and a support worker opened my eyes last year and taught me to deal with what was going on because it wasn’t going to change any time soon. The support worker had come into our lives for both children and yes, it was her job not only to support my children but also to look at us as a family and see if there were any areas us as parents needed our socks pulled up on or needed extra support with. It filled me with comfort because she would often refer to us as amazing parents, not only to our faces but to schools, doctors and co-workers too. It is good to be confident enough to know in your knower that you do all you can for your children but when someone else tells you…. WOW that’s affirmation!
All that being said, today fills me with a lot of mixed feelings. If he is on the spectrum then I will feel like I have lost another little bit of another child. It is absolutely true that when your children get diagnosed with a condition you will logically tell yourself that they are no different, that they are exactly the same child as they were yesterday but, you can’t help it, it’s a feeling you have no control over. Then will come the guilt (I can’t grow children properly, I must have done something wrong), I know this is again irrational and ridiculous but it is something we have little control over feeling. If they tell me he is not on the spectrum and does not have the condition I will start to look at my parenting again and beat myself up again about how I must have failed because at times he is a really confused little boy that has a very different take on the world than we do.
Lewis has an awesome personality and will always tell you exactly what he is thinking. He will correct someone if they get the tiniest detail wrong and he is very bright, articulate and thorough. All this makes me immensely proud of him. He also has a flip side. There are often times that things don’t go in the exact way he needs them to go, in those times he struggles. He misreads situations too and this upsets him when he realises. There is no in between with Lewis he is either happy and everything is going right or he is unhappy and everything is spikey.
Both boys are coming along to the assessment and this is the first time they will have been to this building with these new people. Parking is a royal nightmare which will irritate me to boiling point. Spencer’s Coprolalia and tic’s as a collective are very full on at this moment in time so not only will we be nervous about why we are there, we will also have to wear our smiles and our game face because we are going to face a lot of people that come at us to let us know how his tic’s have hurt their feeling or offended them. Today is a day I want to concentrate on my boys, on Lewis especially but it is yet another day I will have to hear about how other people have felt because of a single solitary tic that had no intention or meaning behind it, I will have to hear about how we have ruined 5 seconds of their life and listen to the negative drama unfolding for them.
Don’t get me wrong I love my children just how they are and I am happy that Spencer can come with me today and see this process from a spectators angle rather than him being the patient. It just makes me sad that we can’t just mind our own business today for just these few hours. That I have to deal with grown-ups feelings being forced onto me more so than the feelings of my children and what they are going through.
Anyway here I am rambling on when I need to go and get myself ready.
Shoes on – check
Lunch boxes ready – check
mobile phone – check
change for parking (if I ever find a space) – check
GAME FACE – Check
Happy smiles and calming thoughts- check!