There has been something going on with my eldest daughter P since she was a tiny baby.
First it was reflux and eczema covering her face where she was reacting to dairy coming through my breast milk. Then came the multitude of food sensitivities which we discovered when she was 2½. A few months previous to that she stopped sleeping (both during the day and at night) and was waking up ten times plus.
Every. Single. Night.
Nowadays she rarely sleeps through, and she is six next week. On top of all this she never outgrew the toddler meltdowns, and her violent outbursts have been steadily getting worse.
Not quite right
Something has felt not quite right for a very long time, and I just knew there was more to this story than everyone else allowed me to think.
"She'll grow out of the allergies, don't worry"
"She'll be so tired when she starts school that she'll start sleeping all night, don't worry"
"It's all normal kids stuff, mine fight like cat and dog all the time, don't worry"
The well intentioned, yet largely unsolicited advice, has been very little comfort to me over the years.
I'm kooky when it comes to my gut instincts, but they rarely let me down. Last summer P had a whole bunch of gastro tests done, to investigate whether there was something medical going on, but every single one came back negative. It was a huge relief, but left us not really knowing where to turn next.
So on we plodded with the best parenting we were capable of on no sleep, and a diet so wholesome that her teachers regularly comment on how envious they are of her lunch.
Last September I wrote this over on my GAPS blog.
"I'm going to set the cat among the pigeons here. What if her problems aren't being caused by standard allergic reactions to food, but by a toxic overload and leaky gut syndrome? What if the super clean diet of cooked from scratch organic goodness she has been eating all her life is the only thing saving her from an ASD diagnosis? It's no secret that ASD and food sensitivities go hand in hand. I'm starting to think that my hubby and I have been tearing ourselves into pieces looking in all the wrong places."
Christmas saw my family in absolute dire straights. Hubby and I then went on a mission to try and turn it all around, and totally eradicate our own negative behaviour. It was hard. We didn't so much as raise a voice over the two week holiday, but we did see improvements.
Unfortunately it didn't work the miracles we were hoping it would though. By Easter her sleep had gone to pot again, and the violence towards her younger brother and sister were getting more frequent and intense. We couldn't trust her to be alone with them in case she hurt them. I conceded that what we were doing wasn't enough and that perhaps my theory about autism wasn't so whacky after all.
Our biggest red flags
- lack of empathy
- inability to read body language or communicate non-verbally
- toddler like temper tantrums
- obsessive about her likes
- has to be in control
- incredibly poor sleep
Getting the help we desperately needed
We are lucky to have private medical insurance through work, and jumped the queue massively to see a top specialist. Dr. K assessed my daughter and asked me what felt like a million questions, all the while being privy to P's full range of emotions. Dr. K told me it would be high functioning, but there was definitely something needing to be investigated. While we waited for our follow up appointment we had to complete more questionnaires, as did school and our GP. At the appointment we went through what the sheets said, were asked even more questions, and were then told that Dr. K would be giving us a High Functioning ASD diagnosis.
To be completely honest I think the doctor had made up her mind last time, she is a leading expert in autism after all. We were asked whether we wanted to contest her decision and see another doctor to have an independent assessment done, but we declined. She was just confirming what we had already come to terms with. Now that we have a diagnosis, hopefully we can start accessing the support our family so desperately needs.
It's official. She's on the spectrum. Now what?
Why am I writing this and telling the world that my kid has autism? Quite simply because there is no shame in having a child on the autistic spectrum. P's condition hasn't been caused by anything that anyone has done, or could have done differently.
There will be no guilt. There will be no apologising.
This is the way she was born and what my husband and I now need to do is start equipping her and the rest of the family with the tools we all need to live a happier life.
Attitudes will only change once people start talking about this stuff out in the open.
I keep hearing the term early intervention over and again, and because she is only six I'm extremely hopeful that we will get ourselves to a much happier place fairly quickly. Hubby and I will be tapping into the support networks and parenting groups that will help us do this. You can learn more through the National Autistic Society.
A plea to trust your gut
I've also written this as a little plea to parents to trust their gut instincts when it comes to your kids. If you know something is up then fight for an answer.
Do not allow yourself to be rail roaded into thinking that everything is fine, when you know in your heart of hearts that it's not.