Parenting isn't like I imagined...
Truth is I wasn't sure I should even share this post... I guess in a way I don't feel it is my story to share and more importantly I want to of course respect our sons privacy. Like all Mum's I am fiercely protective of my boys and I have found that to be particularly true more than ever this past year. However, the challenges ASD has brought us haven't just affected Leo, its changed us as a family in almost every way possible, even before he was diagnosed. The way we parent, the way we go about our day both individually and as a family, the way my husband and I work in our jobs, our marriage, the way we communicate, Elijah's childhood, our friendships and socializing, Leo's schooling, our mental health, even my physical health has been impacted by the stress of it all.
April is World Autism Month and there are SO many parents on this same journey, some probably feeling alone and not sure how to navigate it. I know that is how we felt and it's only in recent weeks I feel like I finally have control of what for the past few years has felt like constant defeat. I feel it is important to express here though that I AM grateful... Autism is a spectrum and I realize our challenges could be so much harder. I grew up living with my step-brother who has severe autism, he is non-verbal. So I saw the challenges a person diagnosed with severe autism faces, but also the stress it can have on parents and siblings. I empathize with all parents, it is not easy and even if you can't see it please know you are doing an AMAZING job. You are doing the best you can with what you have in this moment.
What are autism spectrum disorders?
Autism spectrum disorders are a group of complex neurobiological conditions. There is no cure. Autism is characterized by varying degrees of difficulties in communication skills, social abilities and interactions. Also by repetitive behaviours and a restricted range of activities and interests.
We did not seek a diagnosis for our son. In fact I remember picking up on a few little quirks where ASD would cross my mind for a few seconds even when he was an infant but i would quickly dismiss it as me being paranoid. Our son is an incredibly bright and talented young boy. He has a beautiful heart and fascinating mind. Leo is quite a sensitive boy and to those close to him can be very caring and loving particularly to younger children and animals. He prefers to play with older kids though which can cause problems with play dates and at school in the classroom. He is an excellent artist and draws from the minute he wakes up to well past his bedtime!
Just before I had our youngest son Elijah, Leo was approaching his third birthday and we started to notice a few changes in our son - his behavioural and social interactions. Others picked up on it too, family members, his teachers, a public speech therapist and a private clinical psychologist. We kept putting his quirks down to his personality and the behavioural challenges we put down to changes in routine (a new baby brother, Dad returning home from FIFO, a late night or new kindy etc). It just wasn't obvious to us. It wasn't until we finally received the diagnosis in a 22 page report on Leo's 6th birthday last year that everything made sense.
What causes autism?
This was hard for me. I immediately thought what have I done wrong? At what point in my pregnancy or my sons childhood did I do something and cause this. I felt guilt, immense guilt. I think it's normal to have these thoughts. Research indicates that genetic factors predominate but it is unclear which genes may be responsible. It is generally agreed, however, that Autism is likely to have multiple causes, including some prenatal factors that result in the common symptoms of Autism.
To respect my sons privacy I won't disclose specifics about Leo's diagnosis in this post. However, if you are on this journey too and would like to connect I am an open book and invite you to contact me privately. I feel unless you are in this situation and have a child with ASD it can be hard to really understand. I have struggled to talk to friends, even family about it because even though they try to understand... they just don't get it! And how could they right? They aren't living it 24/7.
It is important and can be reassuring to connect with families who are going through similar experiences. A year ago before my son was diagnosed I only knew a few children with autism, now through networking, developing those friendships and even new clients, I am meeting so many children with autism and many more parents feeling isolated and not quite sure what to do. To put it in perspective when my step-brother was diagnosed over 20 years ago it was 1 in 10,000 today the rate is estimated at 1 in 70.
What are the signs of autism?
Early detection and diagnosis are crucial for children with ASD to get the best start in life. It is important parents know what the developmental milestones are and to seek advice if your child isn't meeting them. A diagnosis can help you learn more about Autism and equip you with the knowledge and skills to work alongside your child. This is what we were seeking, you are not labeling your child with a diagnosis! Parents usually notice signs of Autism in their child around two years of age, as signs come to light. With the right support and early intervention they may be overcome to improve the quality of life of the person with Autism. There is no cure.
There is a saying I really LOVE "meet one person with autism and you have met ONE person with autism". So remember no two children with autism are the same. In fact if you met my son it's likely you wouldn't even realize he was on the spectrum until you got to know him. Children on the spectrum have difficulties with social and communication skills. Leo for example speaks with what I call a "Peter Rabbit" style English accent and we certainly are not English! We always thought it was funny, a bit of a quirk and were surprised to discover this is in fact a marker for ASD.
Children with autism can also appear to talk “at” people about a favourite topic, rather than have an interactive conversation. Leo will only speak about himself and one of few keen interests he is fixated on with great enthusiasm. Drawing, Zelda (a game) or Maps. It is unlikely he will ask how you are or what your favourite things are etc. Children with autism also exhibit repetitive behaviours, such as flapping their hands or lining up of toys, and may also have different sensory responses to the sight, sound and touch information their body receives.
People with autism can also show a strong preference for routine and predictability. While you may be able to drop by the shop or fuel station on your way home with the kids in the car, unless I tell Leo beforehand and explain what we are doing before and after like a schedule it will often result in a meltdown. Children with ASD insist on activities that follow a particular order and resist any activity with which they are not familiar. Whilst many children like routines, children with Autism may become very upset or anxious if their routines change unexpectedly.
How is autism diagnosed?
There is no single test available to diagnose Autism. An experienced multidisciplinary team is required to carry out an assessment for ASD. The team consists of a Pediatrician, Speech Pathologist and Psychologist. It involves a separate interview and IQ test first Leo on his own with each specialist then second with just us parents with each specialist. We were also required to obtain reports from teachers and we each had to complete extensive questionnaires about our family history and Leo's development, behaviour etc. Once assessments are complete, the team involved in the diagnosis will communicate their findings with each other and reach a decision using the Diagnostic and Statistical Manual of Mental Disorders (DSM). All three must agree with the diagnosis and sign off on it. The DSM lists the signs and symptoms of Autism and states how many of these symptoms must be present to confirm a diagnosis.
We found the public system far too slow and inadequate in this process. I had already done all the parenting workshops (circle of security, triple p, 123 magic etc) and things were going from bad to worse, school was a disaster for a year and a half which is why we are now homeschooling temporarily. We were desperate for support! The best option for us was to take control of the situation and seek an assessment privately, the process was much quicker however it was also a lot more expensive over $3,000 by the time we reached a diagnosis. It was 100% worth it though and if you seriously suspect your child is on the spectrum and have those referrals from teachers, doctors, therapists and can afford it I would encourage anyone to go private over public in this situation should you feel the need for urgency.
I remember when I received the diagnosis it was on his 6th birthday, I was cooking dinner, received the 22 page report via email on my phone. I scrolled right to the bottom read his diagnosis and just cried. I felt in that moment my hopes and dreams for my son and our family were crushed. I was concerned about my son missing out. I wondered how would this affect his friendships and his relationships when he gets older, what about his career path? My son's mental health is of the greatest concern for me and I'm so grateful our new OT has a strong focus on that in therapy as the other therapists we worked with didn't. I was concerned about my son being labelled but really the diagnosis has been the best thing for our son and our family. It has allowed us all (including Leo) to understand why he experiences certain challenges and we now have access to the right supports to ensure he reaches his full potential, and he is getting there. We have seen a big improvement in recent months since we temporarily removed our son from a mainstream classroom and began homeschooling.
I believe our son could have been diagnosed much sooner, received the support he needed and potentially avoided homeschooling. It also could have prevented a stressful, I could even say traumatic couple of years starting school. I felt "Mumma Bear" come out countless times more so over the past year as I had to take a stand for our son and ensure he was receiving the support he needed. I was receiving weekly, at times daily calls to pick up my son from school. Most mornings I would put my sunglasses on and walk out of the school gates crying with a toddler on my hip. I remember sitting in my car one morning hysterical, I just couldn't cope anymore. A friend walked passed and knocked on the car window. It was humiliating but that's what stress does when it mounts daily, it breaks you. Early intervention is crucial.
What happens next?
I found myself asking this exact question because we were kind of left to figure the rest out for ourselves. The first step is to register for NDIS which is a very long process. They certainly don't make it easy! But I encourage you to be persistent and keep calling, keep emailing and DON'T let them forget about you. My advice is to go in prepared. Speak to as many people as you can who have been through the planning appointment themselves and know what to ask for. If you don't ask for it, you won't get it! There were things we received in our plan that I wouldn't even think to ask for that we received because I had had those conversations with people. Plan management, support coordination, funding for consumables and home support to name a few, all I thought we needed was therapy paid for right? I am so grateful for Leo's plan. Make sure you also have reports from all therapists with quotes for their services and what your child needs. I feel having this really helped us with obtaining the level of funding we needed.
It is important to write an Impact Statement too and as sad as it sounds, you really do need to paint your worst day in this statement and again relay your worst days at your planning meeting too. I also would not recommend taking your child to the appointment because chances are they will be an angel for that 2-3 hours you are there and you wouldn't want that to impact on your plan in a negative way. Also it may not be pleasant for your child to hear the things you talk about in the planning meeting. They have tissues don't worry! I think it's expected most parents will cry. I found the planning appointment emotionally exhausting so maybe don't plan any activities for afterwards just go home and rest.
The goal is to work with a plan manager to identify your child’s learning profile and to select focus areas for skill development, such as attention, communication, behaviour, motor skills and social skills. Your therapists will then work closely with you and your family to integrate strategies into family and school routines. Often, once a child starts in a therapy program, difficult behaviours reduce significantly as skills start to develop.
So finally, what's next for our family?
It took 9 months for us to receive Leo's plan and funding, we finally got the good news in February 2020! The entire process was a nightmare but i'm thrilled we are now able to put everything we can into his therapy and prepare him to re-enter a mainstream classroom in the coming months at a new school that is much better equipped to support him. We feel he will really thrive there! Leo had a very negative association with school and I'm proud to say he is actually excited to start his new school soon. This makes us so happy as parents.
With both of our boys being in school full time I can start to take care of myself again, grow my business and with those short breaks from the boys gain a little rest so I can be more present with them and ultimately become a better Mother. It is important to me that I feel like myself again. In giving everything to Leo I really have been in survival mode every single day for the past two years, thankfully my husband has been supportive and been very helpful at home, he always answers my calls at work when things aren't going well but what I have learnt is it comes down to capacity and we need to be realistic. We can only achieve so much with what resources we have. For me personally, I know I need my children in full time school right now and that will be an immense help in gaining more balance and harmony at home. I also know it is what my kids need, that stimulation, social interaction and learning.
It can take time to find the right therapists. I had lost all hope a couple of months ago after working with a number of specialists over the past few years. There is light at the end of the tunnel though, you just have to keep going and if you aren't getting the results you want don't be scared to try another provider! Listen to your gut, you are your child's biggest advocate and you need to do what's best for your family! I did, and suddenly pulled the pin on our therapies last month after being recommended an OT in a Perth Autism Facebook group. Through that connection I finally found an AMAZING occupational therapist! Within the first 5 minutes I knew she would help Leo reach his full potential and give us the support and strategies we desperately needed at home! She answers my questions and gives me strategies to problems I haven't even asked her yet! She just knows what we need and what I'm thinking! Matt and I have been raving about her ever since, we are beyond happy to have found her. We always left appointments feeling unsatisfied and lost, like we were on our own but since we found our new therapist we feel a lot more positive and hopeful for the future! We are so excited for Leo, his future looks bright and we are proud to have such a wonderful, beautiful son and are grateful to be his parents.
As mentioned at the start of this post if you are on this journey too and would like to connect I am an open book and invite you to contact me privately. It is important and can be reassuring to connect with families who are going through similar experiences, I am more than happy to share information and resources that have helped us on our journey and I look forward to meeting you and hearing more about you and your family.
Images of my family by Sandie Mallon
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