What does society need to know about raising a child with Autism?
Hey, there you’re Phenomenal,
My name is Michelle Alexander I am the founder and managing director of AKA Life Coaching, This month’s blog is special to my heart as Trish was not only a young parent but she also has a child with Autism. As you may or may not be aware one of the major reasons I started AKA Life Coaching Transformational Life Coaching for women was because I wanted to encourage women to access the support they deserve. As a young parent myself “I had my daughter at 16 years old, who is now 24 years old” I continue to be driven to support young mothers and their families so that they reach their full potential.
Whilst the average age of first-time mothers has steadily increased over the past few decades, some young women still become mothers early in life. As more women wait until their 30’s or have started having children older, it can be difficult for young mothers to know where they fit in. This can lead to young women not accessing services and can also lead to young mother’s feeling isolated. Being a parent of a child diagnosed with Autistic can be even more isolating as other parents, your own parents, family, and society does not seem to want to understand your child, your struggles, and fundamentally your journey.
In this months July’s issue we look at a young mothers from “SYDNEY AUSTRALIA” journey, i would like to thank Trish for being so frank and honest about her strengths and challenges. I hope you will join me in wishing Trish all the best in her new venture supporting other mother whom have children diagnosed with Autism.
Tell us a bit about your self ?
Hi my name is Trish 32 years old , I am from Sydney Australia. I have one younger sister (she is married with two children, a boy and a girl). Both of my parents were born in the Philippines and came to Sydney Australia in 1987. I gave birth to my son Levi Jaryd in November 2009 when I was 21 years old. By the time Levi was 6 months old I had left my son's father, from that day forward i began my life being a single parent.
What are your dreams and aspirations?
My dreams are to give my son a better future and also give him the best support he can get. I want to live in an environment that is positive by nature, instead of negative vibes. I also want to help mums who have children on the spectrum understand productivity while staying home with their kids. I hope to support mothers to live a life with much needed extra time and freedom.
What does Autism Look like in your everyday life?
My day’s with Levi change and are rarely the same, I continue to work on my patience with him .Levi doesn’t like to go out when he's not motivated and sometimes it does get frustrating that I need to push or force him. However I do have a daily schedule in place which we use for his daily activities. Sometimes as a mum doing everything at home on your own, you get super tired and forget that you have these things to do. I live with my mum but she works 5 days a week as a registered nurse at an Aged Care Facility. My mum is off during the weekend and my mum will offer to take him out / look after him but I am totally scared about how she might treat him when I am not with him. Each day when Levi wakes up he attempts to go straight to the ipad and can easily get glued and or fixated on things. Levi has a number of passions such as playing with his toys and building Lego and “if allowed he would bring his ipad everywhere he goes”.
Tell me how you discovered your child had a disability? who were you with?
I have a relative who completed a special needs course and she knew the symptoms of Autism and saw it with Levi. When Levi was born he had some complications with his tongue which impacted his speech. As a result Levi had a speech delay and has been given speech therapies . Levi was showing signs of flapping his hands, lining up his toys, scared of getting haircuts, cutting his nails (which he had overcome both of them), he didn’t like change of plans and also had learning difficulties at school. So I had to take the chance and find out what was wrong with Levi and asked his school for reports and from the paediatrician and speech therapist. I found out that Levi, who was 8 years old at the time had Autism, Levi was in the Philippines back then. I was with my Aunty and Cousin. Levi’s paediatrician had said that Levi has Autism - Moderate to Mild (Level 2).I was feeling emotional and didn’t know what to think because I never thought it would happen to my son. He was diagnosed with Adhd before he was diagnosed with Autism and i told myself “It can’t be, It can’t be”
How have friends and family reacted ?
I was at a family trip where I had two of my aunties who understood Levi’s diagnoses ,their both sat down with me, my mum and grandma and talked about Levi’s condition. Telling my family members and friends was the hardest thing I did because I didn't know how they would take it but I guess it was when they all said Levi didn’t have Autism and kept denying it that i felt disappointed. They all said that Levi “Looked normal” or “He doesn’t have autism and don’t believe it” till this point I am trying to educate them and it's really frustrating that I need to remind them all about what kind of support I need. I have 2 other relatives that have son’s that have Autism based in the Philippines and these boys are different from Levi but these boys Autism present very differently . This is why they continued to say that Levi didn’t have this condition. However, I do have a family member that’s a special needs teacher who told my grandma that Levi only had learning difficulties and doesn’t have Autism so my grandma believed what she said and told me “Trish, don’t believe that Levi has Autism because it's not true”At this point I was feeling mad and felt like showing all the paperwork I did to get him diagnosed .
Who is your biggest support?
My biggest support was myself and a little help from other parents that had children in the spectrum. Although my family loves Levi but the way they show their support wasn’t quite what I wanted for Levi. They would go the opposite way and leave me to deal with Levi.
What things have you found to enjoy about having a child with special needs?
I totally enjoy the love Levi gives to me, he always hugs me and tell me he loves me. When I am not feeling my best he will come up to me and say are you okay. Levi has taught me many things in life ,like being patient and i know that he is a blessing to me.
What has having a child with an additional need taught you about yourself , people, family and society ?
I learnt that you need to have patience, self control and also create an environment that can help you and support you and also have a community by sharing your stories and letting people know that these kids are special and that they are a blessing.
What are the challenges you face as a parent to a child with special needs?
My challenges as a parent is not being able to sleep properly, not able to complete most of my tasks because he needs all of my attention and not getting the right support from family and friends.
What areas are you still trying to overcome?
I am trying to get him a better sleep routine and also setting up some rules for him that he can follow . I also using the daily schedule for his daily activities as he finds it not interesting so I am trying to find other ways to overcome this so that we can have a set routine.
How can we as society support you?
It would be great if people would educate themselves about Autism and what i mean by that is truly understand what Autism really is. As a parent with a child with Autism i often feel like i need to educate or tell family members or friends about Autism. It can be stressful consistently reminding people that our kids have Autism.
What has Levi’s educational experience been like for you and for your son?
My son's school has been very supportive with his special needs and they have been able to follow what I have been asking them to do with Levi.
What are Levis’s strengths? What does he enjoy doing?
Levi loves drawing and is really good in mathematics and last year was given an award for academic achievements for the school rewards program (we were in the Philippines when this was handed out) He also loves playing on his ipad by playing games such as Minecraft and Roblox and watching Youtube.
What kind of struggles does Levi have because of his disability?
Levi struggles in English such as reading and writing, so the goal at his school is reading and writing with teachers prompt which was part of the IEP (Individual Education Plan)
How does having a child with a disability affect your other children or your choice to have more children?
Levi is an only child but if I was to have another child, Levi would be a good brother as I have seen how he is with my nephew and niece.
What progress have you seen in your child since his initial diagnosis?
The progress I have seen with Levi was him becoming more independent of himself but needing some assistance. I have taught him how to do life skills at home and also his school has encouraged him to do some house work at home. But the biggest progress for Levi was him cutting his fingernails (he does this on his own which we now have nail cutters everywhere) and his haircut also which his school has agreed to help cut his hair.
What treatments or therapies have been successful for Levi?
Levi was taking Ritalin for his ADHD but I stopped Levi taking that, so that he could start therapies. Unfortunately the therapy has now stopped because here in Sydney Australia we have a funding program called NDIS (National Disability Insurance Scheme) where they provide funds for all therapies but for this I had complications and now I am in the process of requesting another application.
What concerns do you have for Levis future? and what are your hopes?
My concern for Levi is how he can cope living in a world that he needs to be independent for himself and having the ability to have a life and a family.
What are your 10 top tips?
Lead everyday with a positive mindset
Take a deep breathe
Journal each morning
Be positive
Dance and Sing
Meditation
Talk to a close friend about your problems
Connect with parents that have a similar situation as you
You don’t need to explain to everyone about your child’s condition
Ignore all the negative vibes and move forward
What support tools would you recommend?
I use Asana (Asana is a project management software) as a tool to get things done for my day where I can check things off from my laptop, phone and iPad. I also do morning pages each morning to release what is on my mind so that I can get through the day fresh and remove all the vibes I am thinking about each day. I also use a daily block schedule to get things done in my day. In regards with Autism I would recommend following “The Autism Community” by Molly and Barefoot Autism Warrior by Ninka Bernadette Mauritsom on their Instagram or Facebook pages.
Find Trish : Trishs Instagram