Along my way I have met many parents who have stopped off at the same place as I was at, or were a few stops behind or in front. Some parents were at the end and were happy and accepting. I looked at them and couldn't see myself being in that place.
I visualise this journey through emotions as being on a map, with various stop offs, but with the end of the journey nearly always being the same destination - acceptance. Sometimes you go back a stop, jump to the next one, miss one out completely. It's not always a straight line from A to B.
The stop offs may not appear in the same order for you either, this picture I've created is a way to demonstrate visually what I am attempting to write.
When I was at the denial stage, I hadn't really heard much about autism, and would excuse J's behaviour ; never wanting to sit down with the other children at snack time, or want to join in with them at sing and rhyme time (at toddler groups when he was 2-3 years old) - I'd say he was a late talker, or liked to be independent.
One mum at the toddler group matter of factly asked me if he had autism, and I immediately replied "no"! I didn't have a clue really, but was aware she was talking about a disability, and I denied it. I didn't want to face facts that he did have difficulties, and that I was worried.
That defining moment still lives with me. I remember it clearly. I remember how I felt. Having someone else point out what I was internally worrying about, created an avalanche of emotions, and I became buried even deeper in denial.
We were sent for a hearing test, a kind of 'par for the course' routine test that is done, to initially rule out hearing loss to be the cause of the lack of speech development and communication.
Here again, I sat in denial, amongst children that were a lot like J, and for whom I could hear the parents talking about autism, and I could see posters up on the walls giving guidance for suspected autistic children.
He doesn't have autism. Nope. He's just a late developer. He's my first born.
If I had a £1 for every time someone back then told me about Einstein and the fact he didn't talk until he was 5 years old, to complain about his porridge (or something like that), and when asked why he had never spoken before, he replied, "because my porridge has always been fine before", I'd not be rich, but I'd have a money jar full to the brim.
The hearing results came back as fine.
It was a few months later when we had a paediatrician appointment, which had been arranged by our GP, that I was to be given a diagnosis, that was made after a thirty minute meeting with the paediatrician.
She handed me a leaflet, not a booklet. It was a folded piece of A5 paper, that talked about autism, and our newly diagnosed child.
You know when you're in your own world, thinking, or maybe on the phone, and you walk slap bang into a glass door, or cupboard, not realising it was there, because you weren't concentrating. It was like that..............
That was what I liken this experience to. Coming out of the denial fog and seeing this sign right in front of you......
I was dazed. Confused. Shocked. In this little leaflet it told me how my life was never going to be the same again, and that my child would depend on me forever.
At home, and before Google and easy access to the Internet, and not wanting to believe the diagnosis, or the leaflet, I got out my old family medical journal. Under autism it had a short paragraph, that informed me that my child would never be independent, never drive, marry, live alone, would be a danger to himself, socially inept, a loner.....
We moved very soon after, to a new area, and at the new GP surgery I was told that they do not make such sweeping diagnoses' within one appointment, and that it will take a year of regular observations, from professionals, before they would give out such a diagnosis.
That gave me some hope as I was still lingering in denial.
I had begun to dip my toes into regret as well though. It had to be my fault. I probably didn't talk to him as much as I should have. I didn't interact with him enough. One person, who shall remain nameless, once told me that it was my fault, as I was the only one with him all day, every day, and so it was down to me. I caused it. That comment still hurts me to this day. Still rattles about, niggling me, but, as I have learnt so heartily over the last decade, you can't live in the past.
Over the coming year, we attended a weekly session along with other children of similar ages.
There were play assistants that interacted with the children, and it was just like a playgroup/nursery setting.
There were parent lessons that we attended during this time. We watched videos, were taught from text books, and talked about our children. It became patently clear to me that he was indeed on the spectrum, or had a severe learning difficulty.
At the end of that year, there wasn't really a big grand 'ta-da' moment. It had built up, trickled in, flicked the light switch on in my brain. So there was never a big build up to them telling me. They knew I knew.
It was from here that they suggested a special school, I went to visit, fell in love with it, and a whirlwind of him being given a Statement of Special Needs (required in the UK to be able to attend a special school or to get extra help in a mainstream school), and him starting as a 'preschooler', attending a few mornings a week, several months before he was able to start in the new school year at the recommended school starting age.
I have bypassed going in depth about the dreadful mainstream playgroup he attended during his one year observations, as it was truly an awful experience for him and me. Their special needs assistant had no empathy, care, or desire to want to help J. I removed him within a few months, after many promises of them trying harder. It was not J at fault, it was them. They were an awful childcare place. I will probably write about them in a future posting.
Around the time J was being assessed, he began to be destructive within the home. He also developed complete terror at me leaving the house without him. I couldn't even go outside to the main bin to empty the kitchen rubbish, without him screaming and crying.
The destructive behaviour he displayed at home resulted in him smashing every cup, plate, mug, lights, lamps, tipping over bookcases, opening drawers and emptying them all over the floor.... in the end we stopped replacing items and used paper plates, plastic cutlery (because I didn't feel comfortable having regular cutlery around in case he used it against me or himself) plastic cups, we had no lights (as smashed glass from bulbs is no fun to step on), and I stopped trying to put everything back on shelves and in drawers, as he would do this several times a day. It was exhausting. I was at a very low ebb. I fell into self pity. I wanted to give up. I mean, I really wanted to give up. I spoke to someone about perhaps having him removed from me, as I was obviously not coping with him, and I wasn't able to help him stop. I was useless, I believed.
I remember attending a family birthday meal at a restaurant, and J acted up, with people from other tables staring and tutting, and I had to leave. I sat in my car, with J, and my Uncle D came out and sat with me. I just cried and cried. I had never shared with any family member just how hard it was for me, and how hard I found it all.
One day though, it all stopped. As another destruction free day ended, I tried not to get my hopes up that it was the end. But the days turned to weeks, and it had just stopped, as swiftly as it had all started.
He was happier, I was happier. My self pity gradually disappeared, and I began on the long road of regret.
I would spend my time pouring over possible causes for his autism/learning difficulties, and I could identify with a few possible reasons as to why it was my fault he had a disability. I had a huge craving for tuna fish during early pregnancy, and there were no mercury warnings back then, or advice to restrict your intake during pregnancy as has emerged over the last decade.
His birth was long and traumatic, and I don't believe the care he or I received was adequate. I was treated with no respect, and as it was my first labour and delivery, I wasn't listened to when I became worried. They knew better than me, or so I was told. It ended with him becoming stuck. He was pulled from me with such force that the doctor was shouting at me to push, despite me having no contractions, and damage was caused to J's head, as well as me (no need to explain where and what that was, it's obvious). As well as J being poorly and requiring oxygen and resuscitation, I had to be dealt with for a few hours afterwards and was close to having a transfusion.
I did have moments of anger when reliving what occurred during those 39 hours. When no-one is listening to you, and dismisses you as a stupid first timer, I feel anger at myself for not being more forthright and demanding. That was where I directed my anger, at myself. I have fought through depression, have a huge weight issue, and all because I internalise and hate myself for not helping him when he really needed me to. For me, that has been, and still is, the hardest thing for me to overcome.
Regret lived with me for many years. Guilt and regret. It has taken me a long time to put that to bed.
I went through much sadness over the way J wouldn't be able to experience marriage / a partner, children, work, driving, independence, and all the usual expected milestones of life.
I flipped the negativity about his disability, and turned it into positives.
J has never, and will never be prejudiced towards others. He doesn't see hatred.
He views nature as a most wonderful thing, and can spend hours wandering around a forest, sitting under trees, listening to wildlife, dancing around as the rain falls on his face, and finds peace.
I don't remember the day or even month that I emerged from regret and became fully accepting of J and his disability. It just happened. I had no more fog clouding my thoughts. I could just see this perfect boy, with a big smile, loud giggles, and who was bouncing and dancing his way through life.
I 100% accept J for who he is.
He is settled and happy at home. I do not make unreasonable expectations of him. The house runs fairly smoothly, and he doesn't get stressed over much. I understand him. I understand his noises. I know when a noise means he's in pain or is scared (like when he loses a tooth, I now recognise the noise of panic he makes at the moment it comes out). I know when he makes a screeching noise, it doesn't mean he's in trouble, it's his happy, playful noise.
I don't feel regret for him any more.
I know he will always be with me, and I am making plans for the future, when my other two children are off out in the world, making families and memories of their own. J and I will go off travelling around the country in a big camper van, or ideally one of those big American motor homes - I love those. He loves travelling. He adores nature. We'll visit many places, and have fantastic trips away.
Going back to the picture I made about the journey we make, when you're feeling low, or alone, remember that there is always another parent at that same place, feeling equally alone, lost, confused. If we all extend a little more kindness and empathy, we could all find an easier way to travel along this route.
I can state categorically that you will meet some amazing parents, who have their own stories to tell. You will make some lifelong friends. They will be there for you, with a sympathetic ear, shoulder to cry on, and a knowing nod. Advice is swapped without fear of being admonished.
If you are in any doubt whatsoever, I am wholly, truly, totally in love with my Boy. He is amazing. He makes me proud. He makes me smile. He has made me a better person.
And just in case you still feel alone, just remember this......
