Guest Kween: FRIDA PAYNE “Autism, My Son And Me.”

Guest Kween: FRIDA PAYNE “Autism, My Son And Me.”

For as long as I can remember I wanted to be a mother. Growing up in an Italian family we were always surrounded by our younger cousins. I couldn’t wait until I had my own.

I met my darling husband at 31. I got married at 33 and I was knocked up 6 months later.

It was a long 9 months and the birth, it didn’t go to plan. Antonio was one week late and I ended up having an emergency C section. We named him after our Dads: Antonio Ross Payne and from that day on in December, our lives changed forever.

Motherhood was not what I expected it to be. Antonio did not sleep for the first two months and when I say he didn’t sleep, I mean he’d be down for a max of 40 minutes a day. We tried everything; rocking him, driving him around, he just would not settle. Antonio didn’t breast feed well either. I stuck it out for two months and then put him on the bottle (side note: my second child breast-fed for 18 months with no issues).

The first few months were like a blur. I did not have that maternal feeling and I was questioning everything. I’m usually a confident person but when it came to this, I was shit. It was like I was an ‘amazing parent’ before I actually had kids! I did everything I said I wouldn’t do. And I hate to admit it but I felt like I didn’t love him.

This makes me cry when I think about it now. How could I not love this child? Deep down I knew I loved him but something was missing. That loved up motherly feeling that everyone talks about wasn’t there. This should have been easy for me and I just wasn’t getting it. (Side note two: when you have a baby take all the help you can get. Don’t be a hero! People do want to help).

When Antonio was six months old we decided to try for another baby.  I mean seriously, what the fuck were we thinking? Lol! But things had settled down heaps, Tonio was in a great routine (after a lot of hard work) and generally he was a happy baby.  We got pregnant on the second try and nine months later our little Kiki (Chiara Lucia Payne) was born. Making it 15 months between the two of them. Chiara was the total opposite to Antonio, she slept well, fed well, and things were generally going great!

At this time my husband Marcus started working FIFO (fly-in fly-out in the mines). His roster changed a few times but mostly he would be away for 28 days then back for seven. At this point, we had a two-year-old and an 11-month-old, so off he went. At the time, it felt like 99.9% of things were okay, but when I think back on it now, I honestly don’t know how I did it. Silver lining: yes, it did enable me to stay home with the kids without working but it was even harder on Marcus as he missed out on a lot of the kids growing up (he missed every one of Kiki’s Birthdays until she was five). To survive, I spent most weekends at my Mum and Dad’s house. My sister also lived around the corner, so the kids were able to spend heaps of time with their Nonno, Nonna and their cousins.

Generally Antonio was a happy toddler, he didn’t really speak that much and was always fussy with his food. He would pick one thing to eat and pretty much refuse anything else for the next few months. He wouldn’t eat vegetables without adding something sweet to it. When he turned one he just refused to eat anything. Nothing!! He would have major tantrums in shopping centers and it got to a stage where I would just not take him out. He would flap his hands and walk on his tippy toes, sometimes even on pointe, like a ballet dancer. He was always moving.

Around the age of two he started to write letters. Totally self-taught. I remember my sister (who is a special needs teacher) saying to me “You do realize that it is not normal for him to do this at his age”; it was like he had a photographic memory.

I guess I always had a gut feeling something was off, so I went to my GP.  He advised me to wait because of Antonio’s age and explained that things may settle down. I must say they did. He started talking more but he also started to bang his head against doors and walls. It wouldn’t hurt him, he just wanted to do it.

Just before Antonio started kindergarten at the age of three, he was writing big words like ‘elephant’ and ‘iguana’. He could read books. But the meltdowns were also more frequent and I knew we had to investigate it further. An angel came into our lives in the form of his kindy teacher. I explained to her what was happening and with her help, Antonio was referred to the school Occupational Therapist.  The OT (another beautiful lady) did some tests on him and wrote us a letter to take to a developmental pediatrician. Cue another trip to the GP to get the referral to the pediatrician. You would think getting an appointment would be easy right? The waiting lists were six to nine months long. Luckily for us the pediatrician (another angel in our lives) had a cancellation and we finally had an appointment.

She told us she thought there was reason for him to be tested for Autism. I was not sad, nor unhappy, I just wanted to help my child quickly and get it done.  This was just something we needed to deal with.

A speech pathologist and a psychiatrist came to our house (Marcus was home) and they started doing the tests.  I held it together for a little bit but then I just broke down. I knew what the answer was going to be but the reality of seeing him with these two women really broke my heart. He was happy and fine. Mummy and Daddy were not.

Nine months later we had our diagnosis. Antonio had Autism. So what’s next?

Well, there isn’t a ‘person’ that you can go to get ‘all’ the answers. Nope, a magician does not come riding in on unicorn and tell you everything that needs to be done. You have to research OTs, speech pathologists, psychiatrists, etc. You need to research what’s going to be the best form of therapy to get him through a day, to get him through his life. Forms needed to be filled out, there was funding to get. So many factors all wrapped up in this one word “Autism”.

The first two years of school were a learning curve. Yes, kindergarden was hard but we got through it. Antonio had two brilliant teachers and an amazing Educational Assistant. He was having therapy weekly and he was making progress. He even tried a strawberry (that was the one and only time, but he tried it). Antonio had an IQ test to see how exactly smart he was. He was doing fantastic.

Then BAM! There was full-time school: new rules. I was so used to everyone listening to me and working as a team with people around him and all of a sudden no one was paying attention.

“He has to do this, he has to do that. He has to eat his lunch.”

“Antonio doesn’t eat. He will eat when he gets home.”

“He has to eat!”

“He won’t eat, do you understand?  Do you realize his brain does not work like ours?”

“Antonio is hitting, he is aggressive.”

“Hitting? Who is this kid?  He has never hit me in his life!”

“We need to tell the other kids he has Autism.”

“Why? We aren’t ready to have that discussion yet.”

I literally felt like I was the one now hitting my head against a brick wall.

In the middle of last year my Dad suddenly passed away from a heart attack. It turned our world upside down. Antonio did not cope. On the day of the funeral, it finally hit him. As we were walking in to church Antonio was saying to me. “Where is Bello (a name he called my Dad) ? Why did Bello die?” The reality had set in. His words were so literal. He asked me “Can we build another Bello?”.

He still will not listen to any Elvis songs (my Dad was a massive fan). My kids would see me crying every day which in turn would make them cry. “Mummy please don’t cry, please don’t cry. I don’t want you to cry anymore.” The loss of my Dad left a massive void in not only my life but my husband’s too. He was dealing with his grief and I was dealing with mine.

So in the middle of all this grief, Marcus and I had to decide if we were going to change schools. Countless meetings had not changed anything. Do I leave this school where he has amazing friends who knew his quirks, who loved him? Do I move my daughter who loves this school? Chiara, who had had been to every therapy session with him, who stood up for him when he needed help? My blue-eyed gorgeous angel Kiki, could I do this to her too?

While debating the issue, I would drop Antonio off at school with nerves in my stomach. What was this day going to bring? To cut a very long story short I started interviewing schools. I spoke to a lovely lady who said all the right things. “Nothing you are telling me about your son is anything we haven’t dealt with before.” YES! I had finally found the right one. I cried and thanked her. (Side note three: I’ve lost count of the amount of crying I have done in front of strangers).

After a lot of soul searching, we decided to change schools. Marcus was back from FIFO as things were getting too much for me to deal with on my own.

The first few weeks were bumpy but I am so happy to say we made the right move.  I knew going to a new school was not going to magically fix everything but having people around him who understood why he does what he does is making life a lot easier for all of us. He loves it there and so does Chiara. He has had the best four weeks at school – better than the whole of last year. Kids are so resilient! I also started working again this year which added another level of stress but it has all worked out amazing. To be honest I think my dad has been pulling some strings up there.

The one major thing I have learnt out of all of this is you find out who your real friends are. The people you think will be there, really aren’t. To the point where I told a ‘friend’ I would fucking kill her if she spoke negatively about my son and his Autism again. A bit dramatic I know (and as if I would) but I’m also lucky to be a part of a big supportive family and an amazing network of friends.

I thought it was quite apt that World Autism Awareness Day fell on my Dad’s birthday this year. My Dad was always open to finding out more. He came to a few of Antonio’s appointments and really tried to understand how to help him.

Everyone out there be aware. If you see a little boy or girl having a tantrum, it could be part of a bigger problem. For example, one day we were out and Antonio could find every letter of the alphabet in this shop but couldn’t get to the Z. He had a full blown meltdown in the middle of the supermarket. There was nothing I could do but reassure him that we would find the Z somewhere. We ended up getting a piece of paper and writing it all down. In situations like this, please don’t stand and stare, there is nothing worse. He cannot help his behavior.

To any parents on an Autism journey, keep fighting and be an advocate for your child. You are the only one that can, you are their voice!

The one thing I do know is with our love and support and the right people behind him, Antonio will be fine. He is one of kind. Just like my Dad. He also loves to sing and perform (like his Mumma). He is obsessed with words and letters. He is so fucking smart.

We never question anything Antonio says. He can’t lie (unlike his sister hahaha). He is going to do something great one day, I know it, and if anyone crosses him Chiara will kick their ass.

Motherhood may not have been what I thought it would be but it has taught me so much. I would die for those two little fuckers. I love them so much my heart hurts.

Frida Payne is a fun, loving Mum-of-two from Perth, Western Australia who lights up any room she walks into. She’s a one-eyed West Coast Eagles supporter, a mad Elvis fan, a vintage Barbie collector and a karaoke enthusiast. What’s not to like?

@fridapayne

2 thoughts on “Guest Kween: FRIDA PAYNE “Autism, My Son And Me.”

  1. Wow Frida that is raw and so eye opening. You have had a massive challenge and Antonio is one very lucky little man to have such strong and loving parents. I loved your Dad and his eyes would light up when he talked about him. Stay strong and come on u Eagles.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s