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.

 

Big kids need attention too.

When you have babies and toddlers, it is so easy to get caught up in their needs, what they’re doing, how much they’re not sleeping, or how often they’re waking at night. Sometimes you get so caught up in the bone wearying exhaustion that goes along with parenting that happens in the early years, that you miss other things that are going on around you.

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Image Source

Yesterday I realised how much I’ve missed while I’ve been busy parenting twins who still wake at night. Dylan and Mahalia are beyond helpful with Harry and Zach. They play with them in the morning while I have a shower, entertain them while I clean up dinner, let me know when someone has a nappy bomb, and are generally just awesome with them.

We’ve been lax with bedtimes over the holidays, and there’s been lots of hanging out and watching movies on tv. But one on one attention from me has fallen short, and in my sleep deprived exhaustion, I’ve been grumpier than usual.

Yesterday, while eating a snack, Mahalia started crying, without seeming to know why. After lots of cuddles, she eventually calmed down, and told me she was crying because she thought she would get in trouble for getting something to eat without asking. Now, I prefer if the kids ask first before raiding the cupboard as they’re known for snacking just before lunch or dinner, but at other times it doesn’t bother me. It made me realise though that Mahalia’s hanging out for some quality time with me, without toddlers interrupting.

The afternoon was filled with tantrums that only an overtired six year old can produce. She may no longer nap during the day, and we may be taking it pretty easy these holidays, but Mahalia is still up at the crack of dawn, and I think I need to be a bit more strict with bedtime. Both Dylan and Mahalia like to read in bed after being tucked in, but from tonight I’ll be setting a time limit before lights off.

Harry and Zach go back to day care next week, so the last few weeks of the school holidays will be spent doing stuff that’s fun for the big kids so I can fill up their love tanks. Ngala is only two weeks away, so hopefully it won’t be long until everyone is sleeping through the night and I can get rid of might sleep deprived grump.

2014. It’s almost over.

I can’t believe how quickly 2014 is coming to an end. The past six months have been a blur. Trying to find a balance between full-time study and parenting four children has meant that pretty much everything else has fallen by the wayside.

October and November were filled with writing assignments, studying for exams, the exams themselves, and a two week break before I started my nursing clinical placement in December. I had grand plans for blogging during my break, but my brain kind of crashed, and between catching up on stuff around the house that had been neglected for a semester, and having some  time just to be, blogging never happened.

My placement while an amazing experience of surgical nursing, was exhausting to say the least. I finished a week before Christmas, and this year I was unorganised on the present front. It was a mad rush to get the Christmas shopping done on the sly with four kids at home from school and day care. Thank goodness for extended family and late night shopping.

And now we’re two days out from the end of the year, and I feel like I can finally relax, can finally breathe. It’s probably the first time since Harry and Zach were born (16 months ago today!), that I feel like I’m really relaxing. Twins are fantastic, but man are they hard. All parenting is hard at times, but adding twins to a family with two other children already? Takes it to a whole new level. Harry and Zach are reaching an age where they are exploring their independence, they still need me, but not so much as before. All ages of childhood bring challenges as a parent, but I think 2015 will be easier than this year has been. I think I’ll have more time to do things I enjoy, that have been let go in the past year and a half.

I’m not making any new year’s resolutions, mainly because I’ve never keep them. But there are some changes I want to make to my life, some goals I want to achieve, to make life more organised, more enjoyable, more memorable. I finish my degree at the end of 2015, so I’ve got to make a decision early on in the year about whether I’ll head straight into a midwifery post-graduate degree, or if I’ll work as a registered nurse for a bit first. My mind changes everyday, and every nurse I’ve sought advice from has a different opinion. But I’ll leave that for the new year.

2014 has been good to me, but I can’t wait for 2015 to begin.

A letter to harry and Zach: 12 months.

Dear Harry and Zach,

12 months.

A year.

A whole year you’ve been here. It feels like it’s passed in a blink of any eye, yet I feel as if I’ve lived a lifetime in the past twelve months. I knew from having Dylan, that when you have a child, your heart grows immeasurably. I knew from having Mahalia that when you have another child, your heart grows again. I was not prepared for how much my heart would grow, the depth of my love that came with your arrival.

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I was terrified while I was pregnant with the two of you. Caring for one baby is hard, how the hell was I going to manage two? But here we are, we’ve survived our first year together, with more laughs than with tears. The past year has not only been about discovering you, watching you learn and grow, but I’ve discovered myself too, I’ve never felt so comfortable in my own skin.

Who you are and what you do:

Favourite food: For both of you, it’s weetbix, spaghetti bolognaise and yoghurt (but not together).
Least favourite food: Harry – porridge, Zach – I don’t think I’ve seen you turn your nose up at anything yet.
Song: ‘Three little fishies’.
Doing: Waving, clapping, crawling and pulling up on furniture. You’re both so close to cruising.
Saying: Mama, Dada and buba.
Sleeping: Sometimes.
Teeth: Harry – two all the way through, and cutting another two, Zach – one all the way through, two have just come through your gums, and one more cutting.
Favourite toys: Zach – blocks and musical instruments, Harry – anything Zach has in his hands.
Favourite activity: bath time.
Who makes you laugh: each other.
Favourite person: each other.

We’ve had so much fun this past year. You bring joy to so many lives, and all who meet you adore you . It’s amazing see ing the bond between the two of you. You have such different personalities, Harry you are still so relaxed about everything, whereas Zach you are constantly on the go and trying new things, yet there seems to be an invisible thread that always draws you back together. You crawl around the house together, you crawl over each other in the bath, explore each other’s faces, try and cheer each other up, and make the other one laugh. You are so incredibly lucky to have each other, and we are so incredibly lucky to have you in our lives.

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Happy birthday my babies, and thank you for picking me to be your mama. xx

Quiet. Behind the scenes.

Well didn’t this little blog fall off the face of the earth for a few months! I’m not going to apologise though, because, well, life. And priorities. People often say to me that they don’t know how I manage with four kiddos, and twins to boot. I get told I always seem so calm and relaxed, and they don’t know how I do it.

While I appreciate the acknowledgement, they don’t see what goes on behind the scenes in order to stay calm and present in my children’s lives. After 17 months of broken sleep (I’m counting pregnancy here too), my brain doesn’t have the energy to focus on the unnecessary. No knitting, no sewing, photography, and no blogging. When all the kids are in bed for the night, the tv goes on, and I veg, letting my brain have its down time before the cycle of sleep, feed, sleep, feed begins. Sometimes I read, but more often than not, I drown out the day with the tv.

What people don’t see, is the support my husband’s family gives us, to make our lives a little bit easier. We are insanely lucky to live rent free in a house my in-laws own. It was such a relief when hubby left the Navy, and it took months to find a job that suited him, and our family. Our savings would not have lasted as long as they did had we been paying rent. We won’t be here forever, we will eventually need to find somewhere bigger for our not-so-little family, but living here has given us some breathing space as we adjusted to life outside the Defence Force.

I’ve just finished 3 weeks of practicum in a mental health hospital. No 9-5 work day as a (student) nurse. And while Harry and Zach are in day care, prac would not have been possible without my mother in-law dropping them off some days, and picking them up on others. Those late nights, my father, brother and sister in-law would all come along to feed my tribe and put them to bed.

This week begins my first semester back at uni after Harry and Zach’s birth. Once again my mother in-law will be helping out, picking the bigs up from school once a week, and dropping them off another day. We are eternally grateful that we have such a supportive family in our network. My return to uni would not be possible without their help. Sure I could delay going back to uni another year, or go back part-time, but I’m looking at the bigger picture. I want to get back into the workforce, I want to pay taxes to help fund the healthcare, education and infrastructure our family relies on. I want us to once again own our own home, I want breathing space in our budget, I want my children to grow up knowing that if you work hard, you can achieve your dreams. I want to be in a position to support those we love when they can no longer support themselves. I want to give back.

So, I may be calm and have it together, but I have all these thoughts inside my head. I’m like a duck – above the water, a duck’s body seems to glide effortlessly across the surface, while below water, it’s little legs are paddling furiously. I have all this support around me keeping me afloat, and the unnecessary just falls by the wayside while we get through. Because the unnecessary will still be there once the hard days are done. Those other things will wait while my brain rests, and I breathe.

Community School

Being an ex-Navy family, we’ve moved around a fair bit, and our older two children have already been to three different schools in their short schooling lives. I was worried when we started at our new school that we, or rather I, wouldn’t fit in. We are living in a higher socio-economic area than we’ve ever lived before. The school is the smallest we’ve been too, and I was worried that it would be such a tight-knit community that parent friendships would have been long formed, and I’d remain on the fringe. I find talking to new people difficult, especially if there is already a friendship group formed. I suck at small talk, and approaching someone I don’t know fills me with anxiety.

It seems I judged too harshly, and too prematurely. Other parents haven’t hesitated to come and talk to me, to make me, and my children feel welcome. To make our family feel welcome. Class contact lists are shared between parents, and there have been offers to pick up Dylan and Mahalia if I ever get stuck with Harry and Zach. At the end of each term, a picnic/play date is organised for each year (at least in the junior years) so that children can play together while the parents get to know each other better.

Two weeks ago the mother of a child in my daughter’s grade passed away suddenly, and last week we found out that the younger sibling to two students at the school, who happen to be in Dylan and Mahalia’s classes, has been diagnosed with leukaemia. She can’t be more than three, and already her little body is experiencing chemotherapy and all its side effects.. Life can be so hugely cruel and unfair. I can only begin to imagine what these families are going through. Our little school is rallying around these families though. Meeting are being held to discuss how we can help these families, food rosters organised, people volunteering to be the liaison with the families sot that they don’t have to deal with hundreds of people in their faces at what must be an awful and heartbreaking time.

The universe throws out devastating situations to good people, people who only deserve to have good things happen to them. And while it doesn’t make up for, nor cancel out what these families are going through, there always seems to be some kindness, some goodness that shines through these dark days. Our little school has got the backs of these two families.

Our school is definitely a tight-knit school, but it is also welcoming, caring, supportive, and one that I’m glad my children attend. It’s a school community that I’m proud to be a part of.

Universe? If you’re listening, it’s time to give these families a break.