Here's how the journey starts.
You have a baby. You look at this healthy kid and dream what their life may be. A doctor? A lawyer? You set the bar for 'happy' and you adjust to parenting life.
The baby doesn't settle. Doesn't sleep. You hear advice from the correct professional channels and read many books. (The ones you read when you were pregnant)
You meet other new parents. They've other issues that your kid has cracked. You offer advice. They listen but take no notice. You do the same.
Weaning. Your kid eats stuff but rarely food items. You put it down to teething. You've an inquisitive child and you vacuum 3 times a day or else your kid does with their mouths.
They start to walk. Oh hell. Everything needs to be put on a higher shelf.
They start to climb like mountain goats. Everything gets moved higher still.
They cry at familiar people. They hug strangers. You're worried but say your child is naturally friendly and you encourage every encounter. You really want your family and friends to like your kid but your kid doesn't adhere to this strategy.
They start nursery. They play with everything and everyone. They get into scrapes. The nursery staff take you to one side to tell you the hilarious thing they did today. Or the inappropriate thing. You're mortified. You chalk it down to experience.
They start school. It's the same as nursery except they have a uniform they hate to wear. It's scratchy. You cut many labels out and keep receipts of items that they just won't even try on. They insist on wearing the same pair of shoes even though they are so old the soles flap. Going shoe shopping is such an ordeal, you order online and hope for the best. In fact, you order everything online because the stares you get when your child has a 'tantrum' are not worth the sale prices.
They get invited to parties. They get invited to friends houses. This declines as the years progress. Sure, you'll have any kid over as long as they offer you a break and play with your kid for an hour. Except they don't. They don't share. They ignore the friend. The friend thanks you for having them but your kid doesn't want to invite them again. The kid doesn't reciprocate.
They invite another kid. The same happens. You stop inviting kids. Kids stop inviting them to parties.
Terrible twos turn into terrible threes. Awful fours, the fives, sixes etc. With each year you hope for a breakthrough. It doesn't come.
Each parent teacher meeting is full of woe. This little fishy you created just won't swim at the same speed or direction as the other little fishes. They won't listen to the teacher. They cannot hit their teaching targets. They fall behind more and more with academic year. Teachers want to know what's happening at home. Ah, it must be the home life. That day you left them with that childminder and they cried for the entire day? That's the abandonment issue. Did you breastfeed? No? That's the attachment issue. Behaviour at home is worse so it's your fault. You despair.
You meet many medical professionals who explain your kids behaviour as poor parenting. Oh, they may not openly suggest this but they'll book you onto parenting courses, ones that explain all about the countless books you read up on to see if you can find a theory that fits.
You try reward charts/behaviour management. They work for 3 days. The chart gets ripped. You despair.
You have lots of friends but you never get to see them. Or when they call, you avoid the call because how can you tell them that you want to close your eyes and not wake up.
You're house becomes a sanctuary and a prison. You watch many dvds over and over again because they seem to settle them. You tell yourself you're a bad parent and look at Pinterest for inspiration. The get clay for art therapy. That's therapeutic isn't it. You envisage your child creating an abstract sculpture or even an actual thing that resembles something. They like the feel of it so much, they become the sculpture and wear all the clay. Nothing tangible is made. You despair.
Your health declines. Your energy levels are so low from this marathon parenting journey you climb upstairs on your hands and knees. Take me time for a shower? You kid will only shower with you. The lines blur from parent to carer. You need a break but your kid cannot bear to leave your side and no one volunteers. And that's ok because your tiger needs a tiger handler and you can't know what unpredictable behaviour would ensue.
Doctors tell you they're anxious and to make them a worry box so they can write all the little things that set them into meltdown on a tiny piece of paper to post. Except your kid doesn't like writing, least of all in meltdown mode. The box gets trashed. As does their room and your favourite vase. You despair.
You read about autism. They don't tick every box but they tick enough to provoke suspicion. You meet doctors/ CAMHS (after waiting 6 months) and they say no, it's your poor parenting skills. You despair.
You're left in the wilderness for years. Unless your kid displays high levels of autism in every category then your kid doesn't get help. They get labeled a troubled child. A manipulative child. An aggressive child. A defiant child. You see, we label everything. Labels tell us what's inside the box. For people who hate labels I say this: would you buy a tin without a label? Would you buy a mystery box without a label? Labels are important. The Autism label is important. It tells my child that what they feel inside is normal. It reminds me that they are different and different is a good thing. It gives us all instructions and insight on how to understand autism and what that means to this individual child. Not every kid is Rainman. Autism may be just one ingredient in a plethora of interesting additions to their personality. And they do have a personality. Every autistic child is different because it doesn't define them, it enhances them.
You finally go private after many years on the NHS hamster wheel. They confirm autism. You cry. Tears of joy at the relief. They believe you. They see it too.
You cry for the years you misunderstood your kid. You cry for the many negative interactions with friends, families and peers. You cry for what the future holds. You cry for the doctor they may have been. Or the lawyer.
Or just happy. You just want them to be happy.
You fight for what your child has missed. Missed therapeutic sessions. Missed interactions with likeminded peers. Missed pleasures. Your lens changes. You ignore the picture perfect social media families and search for kindred spirits. You hope for happiness. You're weary but you'll never give up even though you come so close every single day.
You're a diamond parent. Youre formed under immense pressure. You're a gem.