New discoveries (and an old favourite)

The final challenge in the Problogger ‘Find Your Blogging Groove’ challenge has arrived. Today’s post theme is to write a link post. I have really enjoyed this challenge, and it has reminded me why I started blogging in the first place. One of the most enjoyable aspects has been finding some amazing blogs from a variety of niches through the Facebook group, that I wouldn’t have discovered otherwise. Today I’m going to share a few of them with you.

Running

Forged By Georges Tim is an ultra marathon runner. I think his blog initially spoke to me because my husband is also an ultra marathon runner. Tim writes about his journey to running 100 miles, his inspirations, struggles, and the lessons learned. I love Tim’s attitude – we have similar philosophies when it comes to running, if you believe you can, you can.

Magic of Running Katherine is another long distance runner. We both love half-marathon distance fir similar reasons. Katherine reviews running events, writes about running inspiration, and how to choose a running event right for you. Katherine writing is positive and encouraging, and makes you want to get out there and run.

Autism Spectrum Disorder

Encouraging Others in the Special Needs Trenches Jenny is a fellow ASD parent. Her post about the day her son opening up to her broke her heart really touched me. I’ve been there. It can be hard to get your child with ASD to open up to you, even if they are verbal, but sometimes what they tell you makes you want to cry. Jenny writes to help and support other special needs parents, and I’m so glad I found her blog.

Job Seeking

Kingsley Aigbona I found this post of Kingsley’s really useful. I’m job seeking at the moment, so I’m all for information to help me impress during an interview. I actually had an interview this morning, so I put some Kingsley’s tips to use. While I haven’t got an official job offer yet, the interview went well, and the interviewer told me that they don’t think they can afford not to hire me. Fingers crossed, and thanks Kingsley!

Parenting

Where’s My Glow This has been one of my favourite blogs for many years. I think I found Glow’s blog when I first started reading blogs when my second child was a baby. Glow is a fellow Australian blogger, and our youngest children were born within a few days of each other. Glow writes about parenting, living with mental illness, and has a great sense of humour.

I’m a little sad that the Problogger challenge has come to an end. I’ve really enjoyed the challenges, and it has given me some new ideas on coming up with content, and which styles of blog posts work for me. I think I’ve definitely found my blogging groove back, and I can’t wait to share with you all the posts I’ve got written in my head.

Autism Spectrum Disorder Assessments

It’s the second last day of the blogging challenge I’m participating in. I’m really surprised, and proud that I’ve made it this far. Today’s challenge is to write a post that starts a discussion. I would really love it if you commented here, or over on my Facebook page.

After writing my story post on my eldest boy and Autism Spectrum Disorders (ASD), I had a couple of discussions with other people about their family’s journey with ASD, and difficulties in getting children assessed, diagnosed, and receiving support to help their child reach their full potential. My eldest was diagnosed in a different part of the country to where we live now, and the assessment processes are very different in these two different areas – or they were, I don’t know if the process has changed where we used to live.

So, if you have a child or family member with ASSD, I would love to hear about the assessment and diagnosis process for ASD where you live. This can be whether you live in Australia – I know different states and territories have different processes; or whether you live in other parts of the world.

For our family, we lived in Darwin in the Northern Territory when my eldest boy was diagnosed. Back in 2010, we only needed one paediatric developmental specialist to make a diagnosis, however, the assessment process was carried out over multiple appointments over the period of three months. When I asked our paediatric speech therapy team for advice on ASD assessment, they gave me the contact details of the the paediatric development team at out local public hospital. We saw our GP for a referral, and luckily for us, we had an appointment a month later. The assessment was carried out by a paediatric psychiatrist who asked questions about the signs I had noticed, and who also evaluated my boy’s behaviour, language, and social skills. Following his diagnosis, we were referred to a paediatrician, and to a paediatric psychologist at the local children and youth mental health team. Both the paediatrician and the psychologist confirmed the diagnosis made by the psychiatrist. So for us, from initial referral to a diagnosis being made was about four months. This allowed us to access ASD therapy services really quickly. I honestly believe that it was this access to early intervention services that has resulted in the huge gains that my boy has made.

I’ve since heard that the assessment in Darwin is a lot harder than it was when we lived there. We live in Western Australia now. From what I’ve been told by other ASD families, the assessment and diagnosis process here requires a child to be evaluated by three specialists over multiple appointments, including a paediatrician, speech pathologist, and a paediatric psychologist or psychiatrist. I’m also led to believe that waiting lists, especially through the public system, are quite long, and leads to delays in diagnosis, and in access early intervention services. On the other hand, while the private system is quicker, it comes at a huge financial cost to families.

So, what the assessment process where you live? Is there a huge out of pocket cost to have a child evaluated? And what are the waiting lists like?

I’d love to read about your experiences.

My boy calls me mum.

I first noticed when he was around six months old, although I didn’t realise it at the time. Jumping at the tiniest sound, as someone had struck cymbals together right next to his head.

At ten months old, we used to giggle about him staring out the window, or up at the ceiling, ‘talking’ to someone who wasn’t there. We joked our new place must have ghosts, although none of us believed in them, and the house certainly wasn’t old enough to be haunted.

At 11 months, he spoke his first word, and more soon followed. But they weren’t complete words, just the beginning sounds, and there was no ‘mum’ or ‘dad’. By 18 months, he was losing his words. He seemed to gain one, and lose two.

I took him to the child health nurse. She told me he seemed like a bright happy little boy, not to worry about his speech, boys often took longer to start speaking. We had a new baby, another one with reflux, and who didn’t sleep. We were soon moving again, back to where he was born, away from family. His dad was away a lot. Lots of people told me not to worry, boys often speak later than girls.

We lived in a world of made up words: Noh Noh, and Moo Moo, and Bo Bo. I could understand him, but no one else could. We saw a speech therapist who told me his speech was delayed by about 12 months, but no advice on how to help him, nor a follow up appointment. A friend suggested the local, publicly funded paediatric developmental team. They took us in, they told me they would try to help my boy.

We went to group sessions, with a speech pathologist, physiotherapist, occupational therapist and a social worker. There was I, baby strapped to my chest, hoping she would sleep, and willing my boy to join in, to say hello, to acknowledge anyone but me.

The lack of parallel play became more apparent as his ‘friends’ raced past him developmentally. While they ran around the room playing together, he would sit clinging to me, or staring off into space, seemingly oblivious to the games going on around him.

Then the echolalia started. It was as frustrating as it was joyful. My boy was talking, but he wasn’t telling me what was going on in his head. I still hadn’t been called mum. There were the three hour tantrums, hands reaching up the wail, wails spewing forth from his body because I’d made him come inside, and hung his hat upon a hook on the wall.

There was the physical pushing me away when I tried to pick him up, but climbing up my body when he was scared.

There was leaving the room for 30 seconds to pee, hearing his sister who I’d left sitting on the rug, leaning against the lounge, crying out in pain. Finding her lying on the floor, obviously having been pushed over. Asking him “Why is Mahalia crying”? and being answered with “Why Yaya crying”? and his crying when I comforted her instead of him.

We saw a dietitian, started an illumination diet for intolerance. By then his diet was already severely limited, and there wasn’t much left that he would, or could eat. But boy still wouldn’t call me mum. The voice that had been whispering in the back of my head for so long became louder and louder.

We saw a paediatric psychiatrist not long before he turned three. I told her I thought my boy, my baby, might possibly have autism. Surely she would tell me I was wrong? Three months later, we saw her for a final time. She gave me her report, she told me why my boy didn’t call me mum. We saw a paediatric psychologist, a paediatrician, and they told us the same thing.

The voice in my head had been right all along.

I remember driving to pick up take away that night. Sobbing as I drove. My precious boy had been diagnosed as being on the autism spectrum.

We continued our group sessions, and we found a wonderful behavioural therapist who made a huge difference to our lives. And my boy started calling me mum. We moved again when he was four, and awe kept going to speech therapy until after he turned six. When moved suburbs and schools a final time that final year of speech therapy. It took a year, but he finally started to make friends.

My boy, my baby, whose future I worried about is nine now. His IQ has been tested as superior. He has a great group of friends. At his request, we haven’t told his friends about his diagnosis. His teachers know, and the parents of his friends. He knows autism isn’t something to be ashamed of, but he wants to be seen as ‘normal’. I want him to know he is perfect the way he is.

Most people don’t pick up on it any more. But if you look carefully, it’s right there. It’s the way the hood of his jumper always up, the hair twirling, the meltdowns when his routine has been changed without warning, the meltdowns over his sister’s singing, or if she sits to close, it’s the struggle to cut his hair, the limited clothing choices, the limited food choices, t’s the perfectionism, the reluctance to accept compliments or have conversations about feelings, the shying away from human contact unless it’s his doing.

I can’t hug my boy, I can’t kiss my boy, even when he is hurt and crying.

But now, my boy calls me mum.