It’s Official. She’s on the Spectrum. Now What?

welcome to the Polly show

welcome to the Polly show

There has been something going on with my eldest daughter Polly since she was a tiny baby. First it was reflux and eczema covering her face – related to reacting to dairy coming through my breast milk. Then came the multitude of food sensitivities which we discovered at two and a half.

A few months previous to that she stopped sleeping (both during the day and at night) and was waking up ten times plus. Even now she hardly ever sleeps through, and she is six next month. On top of all this she never outgrew the toddler meltdowns, and her violent outbursts have been steadily getting worse over the years.

Always something

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 of little comfort to me over the years.

I’m kooky when it comes to my gut instincts, but they very 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, I had major stomach surgery at 5yo and would do anything for my own kids to not have to go through the same. It left us not really knowing where to turn next though. 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.”

wpid-img_20150509_103810.jpgChristmas 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. Which trust me was bloody hard, but we didn’t so much as raise a voice over the two week holiday. We saw improvements but it didn’t work the miracles we were hoping it would. By Easter her sleep had gone to pot again, and her violent outbursts were getting more frequent and intense. To the point where we couldn’t trust her to be alone with her baby brother in case she hurt him. I conceded that what we were doing wasn’t enough and that perhaps my theory about autism wasn’t so whacky after all. Then I read this post by fellow blogger Reprobate Mum and alarm bells started well and truly ringing.

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 at The Portland Hospital two months ago. Dr. K assessed Polly and asked me a million questions, all the time being privy to her full range of emotions. Dr. K told me it would be high functioning, but there was definitely something needing to be investigated. I booked a follow up (again lucky enough to queue jump) and in the mean time had to complete more questionnaires, as did P’s school and our GP. We had the appointment yesterday and went through what the sheets said, and were asked even more questions. Dr. K also got to see the way P interacts with her little brother (little sister was left with the Grandparents).

To be completely honest I think Dr. K had made up her mind about Polly last time, she is a leading expert in autism and sleep disorders after all. The questionnaires seem to be just a formality. We were asked whether we wanted to contest her diagnosis of High Functioning ASD, 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 we have a diagnosis on its way, we can start to access 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 is autistic? 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, and 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 isn’t even six yet I am very hopeful that we will be able to 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, and 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.

Changing my Attitude

changing my attitudeHow changing my attitude was vital for turning family life around

December last year was a dark time for me. My little family were on a constant loop of illness, both the baby and the 5yo’s sleep were in dire straights, and our girl’s behaviour was at an all time low. After a disastrous Xmas Eve Hubby and I read the fantastic book 10 Days to a Less Defiant Child.

We spent the entire Xmas holiday doing everything in our power to eradicate our own negative parenting behaviours, which were without a doubt having a massive effect on the kids. After a week of being super calm and not shouting, it became the norm to be calm and not shout, and now three months later I very rarely find myself shouting.

Good Friends

At some point before all this I was with a wise friend, who told me that her daughter’s challenging behaviour has been the making of her as a mum. Her son was really placid and a super easy kid from the off, and had her girl been the same she said she wouldn’t have had an incentive to be a better mum.

Nowadays she’s as much of a self-help junkie as I am, constantly on the lookout to be better than the person she was yesterday. She is one of my main sources of inspiration, and I am truly privileged to have her in my life.

It brings tears to my eyes to think of this conversation, because my friend said to me that I must feel the same. My reply was that no I didn’t, I felt that I was at breaking point and was worried my marriage wouldn’t be strong enough to take the strain our daughter was putting on us for much longer. You’ll be fine she tried to reassure me, but I wasn’t comforted by her words.

I was in such a bad place in my own head that I wasn’t able to look at it from a different perspective. I desperately needed to start changing my attitude, and realising that I was part of the problem, but I wasn’t ready to at that point. Thankfully reading the book over Xmas opened my eyes to how damaging my own negative behaviour was to our children, and since then there
has been much positive change in our house. I feel as though we weathered a particularly bad storm, and I’m now able to look at it in a less emotionally raw way.

changing my attitudeWe still have a long way to go

Things still aren’t as rosy as you might imagine though. Our girl is a terrible sleeper, which I believe drives a lot of her poor behaviour – she is prone to over reacting and throwing strops rather than articulating her feelings. She shouts and screams in her 3yo sister’s face and often gets physical with her but cannot cope at all if littlest lady throws a punch back. All she wants is to be a big girl, but if she isn’t asleep by 6:30pm all hell breaks loose.

I don’t want to demonise her, because she has some utterly incredible qualities too. She can demonstrate such fierce love for her family that it would melt the heart of an ice queen. She will sit for hours and create intricate drawings for us, and completely under her own steam, she made and wrote Easter cards for all the neighbourhood kids.

She is a fabulous kitchen helper, and can crack eggs all by herself. Don’t get me wrong she enjoys licking the cake mixture bowl, but will also help me make savoury dishes. I could go on and on and on here, but don’t want to bore you.

Facing up to reality

I think it’s time for me to face up to reality: my girl is not like most other five and six year olds I know. As I wrote a while back over on my other blog, I truly believe that her super clean diet is the only thing saving her from an ASD diagnosis. Reprobate Mum wrote this eye opening piece for Autism Awareness Week, which has been making me think that I’ve been looking at it all wrong.

I’m starting to feel that I’ll be doing my daughter a dis-service by not seeking a diagnosis if there is one to be had, because if she is going to stay in main stream education, she is going to need all the help she can get.

Have you been down the long and treacherous road of obtaining an ASD diagnosis for your own child/ren? I’d love to hear from you with any words of wisdom!

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