It’s been a while since I last posted, not because there hasn’t been anything worth mentioning but because I haven’t been in the right head space to write stuff (or type stuff if you prefer). Writing a blog post requires concentration, something I just haven’t had much of lately. I’ve been struggling to sleep and struggling with anxiety, bought on by my sons ADOS (Autism Diagnostic Observation Assessment) or rather the outcome of that assessment.
We were originally told that the multi-disciplinary hearing (the meeting where we get to the hear the findings of the assessment) would hopefully be held on the 13th December and like an idiot I kept everything crossed and got my hopes up that would be the case because I just wanted to know whether my son has autism or not and I didn’t want the uncertainty of that to be hanging over my head all over christmas and new year.
When I voiced my concerns to my husband that we may not find out until the new year he said “Well, we’ve waited 3 years, what’s a few more weeks? But I’m not a patient person. I’m the type of person who needs answers like, yesterday. So I waited for the call from the hospital and while I waited I had trouble sleeping. I woke every night multiple times and it took me up to 3 hours to get back to sleep. The first thought that came into my head was always the same question. The question I’ve been asking myself for the past three years. Does my son have autism? The next thought that entered my head was always, “please let our appointment be on the 13th so that I can stop driving myself mad with this question”. I went to the chemist and bought night Kalms but they didn’t help at all so I got Citalopram from my doctor for depression and anxiety but they take at least two weeks to take effect and every day and every night I was going out of my mind.
On the 9th of December I could bear it no longer and I rang the hospital to see if the meeting would be going ahead on the 13th, even though deep down I already knew the answer. If it were going ahead on that date I’d have heard something by now. But I phoned anyway. Just in case the appointment letter had got lost in the post, or the email had gone to a different email address or they didnt have the right phone number for me (even though they had managed to phone me just two weeks ago).
The meeting wasnt happening on the 13th. Of course it wasn’t, and with the christmas holidays approaching I knew we wouldn’t be having the meeting now until January. These meetings are only held on Tuesdays for some reason and they don’t happen in the school holidays and guess what? The first Tuesday in January just happened to be a bank holiday so we were now looking at the 10th of January. Five fucking weeks away. I nearly cried.
On the 6th of January I still hadn’t had a confirmation letter so I rang the hospital only to be told that the clinical pychologist was off sick so they were going to have to arrange a later date and even though it was no one’s fault, I was beyond pissed off.
When I still hadn’t heard anything a week later I phoned the hospital again, only to be told that they were hoping to hold the meeting on Thursday the 2nd february because even though these meetings are usually only held on Tuesdays, they felt I had waited long enough already and were trying their best to fit us in. A week later I still hadn’t heard anything so I phoned again even though I felt like a right royal pain in the arse. They told me they were waiting for confirmation from the speech and language therapist as to whether she could make that date or not.
The following day my daughter just happened to have a speech and language appointment and while we were in the waiting room I bumped into Harrys old speech and language therapist which was very handy indeed because when I asked her if she would be attending Harrys multi-diciplinary appointment she informed me that she doesnt work on thursdays, so I asked my daughters speech therapist (who has also worked with Harry) if she could go along instead and she told me she couldn’t make that date either. I started to wonder whether this appointment was ever going to actually happen.
I dont want to bore you with all the unnecessary details so to cut a long story short, the hospital managed to get hold of another speech therapist and she went along to observe Harry in school and the appointment went ahead on the 2nd of february just as I was starting to give up hope that we would actually find out the outcome before his fifth birthday (which is the middle of March in case you were wondering).
Harry was diagnosed with autism and all I felt was relief. I have always known in my heart that my son is on the autistic spectrum even though its not always obvious. The reason that I was so anxious leading up to this appointment was because I was worried that the professionals wouldn’t see what I see because Harry is different in school to how he is at home. In school he shuts down, just as he did during the ADOS assessment which means that he didnt speak or show any of the repetitive behaviours or any of the rigid play that he displays at home. He just sat and stared with a blank expression and I was worried that they might just think he had social communication delay purely because of his speech and language delay. I was worried that if he didn’t get the diagnosis that I felt he needed then he wouldn’t get the help he needs either.
I should have had more faith in the proffessionals and in hind sight I was silly to have allowed myself to become so anxious but I guess thats just part of who I am.
The clinical pychologists did notice some repetitive behaviours even though they were very subtle. They also noticed that he often gives eye contact from the corners of his eyes rather than directly or that he stares inappropiately. In addition to that I had taken some home videos of him talking in sentences which showed that he has enough speech to communicate when he wants to, which he only really does at home.
When they told me they were all in agreement that my son is on the autism spectrum and that he has Selective Mutism and explained in full how they came to that conclusion, I was surprised when I didnt even shed a tear. The only good thing to come from taking three years to get a diagnosis is that by the time the multi-disciplinary meeting rolls round you’ve already pretty much come to terms with it.
Harry will now get help with his anxiety and selective mutism and I’m going to be put forward for some parenting courses that are for parents of children with autism, because it’s felt that I wouldn’t benefit from a generic parenting course because the strategies generic parenting courses encourage you to use just wouldn’t work with Harry.
For the first time in a long time I’m feeling positive.
For the first time in a long time I can stop asking myself the same question that I’ve been asking my self over and over, because now its finally been clarified. It’s official. My son has autism.
Of course I realise that a diagnosis isnt going to magically fix everything. We’re not suddenly going to be inundated with help and advice. The thing about autism is that no two people are the same. There are no magic strategies. It’s all just trial and error but I’m already learning.
I now know that I’m not spoiling my son or ‘being a walk over’ when I pat his back and count with him when he gets distraught because I’ve asked him to put something on that he doesn’t want to wear. I’m not giving into him when I tell him that he doesn’t have to wear it if he doesn’t want to.
I’ve often wondered if I’m doing the right thing when I try to think outside the box. I’ve wondered whether I’m doing the right thing when I try to get inside Harry’s head rather than try to get him to come into mine. And now I know. I’ve been doing it right all along.
When he became obsessed with his car seat and worried about it and screamed for it when he couldn’t see it, and I bought him a toy one to distract him from his real one, I wasn’t spoiling him or giving in to his demands then either. I was calming him down when he was genuinely distressed.
Now that I know what we are dealing with I feel that we can finally move forward. My son has autism and thats ok.
Every day I’m learning. And every day I feel more and more proud. Not only of my son but also of myself. There are days when I feel I can’t do this but there are days when I know that I can.
There are days when I hate myself for loosing control and shouting and days when I want to give myself a huge pat on the back.
Harry isn’t even five yet so I know there are more challenges to come. Lots more testing times. I know that this is just the beginning but I also know that we are going to be ok. There is an unconditional love between a mother and her child. An unbreakable bond that nothing can ever come between. Not even the daily challenges of autism. In fact in a way autism has bought us even closer. I’ve discovered a strength that I never even knew I had. A love so fierce that I will fight for what my son needs with every thing I have.
This post is linked up with: