From heartbreak to happiness—one family’s journey

Massimo and family_WebNews

Massimo was diagnosed with Autism when he was 18 months old. Gina, Massimo’s mum, tells how the paediatrician said that their son would probably never talk or read.  Gina is keen to tell their story to give other families “hope, strength and courage to get through their diagnosis and their journey”.

“The day of the diagnosis was one of the hardest and saddest days of our lives. Having two older ‘typically developing’ children, this was something we did not expect. It was the moment we felt sadness, fear and loss, it was absolutely devastating. I remember thinking, how do we move on from this sadness?” Gina tells how at that point they knew very little about Autism—barely knew the full meaning of the word; and they had received very little support or guidance as to how they could help their child.

Learning a new language

“From that point, we knew we had to do everything possible to help Massimo, as any parent would.

We embarked on this Autism journey the best we could. It was up to us as parents to become educated and empowered. It was like learning a new language; we had to learn it fast. Not only did we have to educate ourselves, but our families too. At the time of diagnosis, Massimo was very disconnected and in his own world. He demonstrated the typical signs of Autism at a very young age—non-verbal, no pointing, not responding to his name, not engaging with others, solitary play—just to name a few. We studied and researched ways to learn and engage with him and our goal was hopefully to see him engage in our world too. The reality of this was, we didn’t know how long it would take to see improvement, or if there would be any improvement at all. Shortly after receiving the diagnosis, we contacted The Autism Association of WA. This was our first priority,” Gina said.

 Getting the best possible start

Gina recalls: “a huge relief for us, knowing he was getting the best possible start for his development. The staff and therapists were absolutely amazing. Their dedication and commitment in helping Massimo was highly admirable. It was a very slow process, with minimal change some weeks and none at all other weeks. The individual programs they put in place for each child are thorough and achievable. It just took time. Slowly but surely we started to see little changes in Massimo. The first and most important thing we noticed was his eye contact. He never gave eye contact before, one of the many signs of Autism. With time and patience he would look up at us when we called his name. This was an amazing feeling to know he could respond to his name. That was a little sign of hope; he was in our world even if it was for only a few seconds. The connection of eye contact is simply magic.”

Following the two years of Early Intervention with the Autism Association, Massimo was placed in an Autism Kindy and Pre Primary program for another two years at Merriwa Primary School.

There was a voice

“Here we saw Massimo learn and engage with structure, routine and a continual program in developing his language. With an introduction to PECS, Picture Exchange Communication System, we saw Massimo begin to improve with his speech. Again, it was a long, slow process. We then used PECS in our home and literally took it with us everywhere we went. It was his communication tool. He learned to communicate by choosing what he wanted from the pictures and learning to share it with us. This was absolutely amazing and we could see the benefits. He then began requesting his needs and wants—verbally asking, ‘I want drink’, ‘I want apple’. This was very over whelming for us as parents to finally hear our son speak. It was like winning lotto!!! We celebrated and shared his achievements because we were so relieved there was a voice” Gina said.

Gina tells how, following those early years where Massimo had made progress with the 1:1 support, they were intent for him to continue that way. Mainstream schooling was not considered.

Truly remarkable progress

“So, for the following five years Massimo attended Joondalup Primary Education Support Centre and is now in Year 6. We could not be happier with this amazing school. The love, care and understanding we receive on a daily basis are priceless. All the staff are warm, friendly and demonstrate an abundance of love for all the children in the school who live with a disability.

Massimo’s progress and achievements have truly been remarkable. His language has definitely improved, although he can’t talk like you and I, he can communicate so much more which reduces his frustration and stress levels and ours too, for that matter. Last year we were very privileged to receive funding for a new communication device.”  Massimo now uses a TouchChat, a device the size of a mini iPad, which Gina describes as the modern day version of PECS, with technology to assist communication. He uses it efficiently and effectively throughout his school life with “outstanding” results. Gina said they are forever grateful for the opportunity and success of the device.

Finding strength

Now, in Massimo’s final year of primary school, Gina recalls “so many highs and lows with our gorgeous boy. There’s been good days, bad days and days we want to forget. Dealing with the frustration, getting through the challenges the best way we can and trying to remain optimistic. Some days you just want to give up. But you know you can’t, you have to push through every single day because your child relies on you— you have to believe tomorrow will be better. Massimo’s daily and lifelong challenges have certainly put things in perspective for us. It has made us better people and better parents. We have found strength.”

During the Easter period Massimo enjoyed a respite break through the Autism Association’s Individual Options programs.  Respite staff reported he had had a great time, engaging well with the other boys with lots of laughter and jokes. They were particularly impressed by this as the boys were new to Massimo—they had never met before.

Developing independence and life skills

Gina speaks with great appreciation for all the respite staff and the programs Massimo has attended over the past three years. “Massimo absolutely loves attending Respite. The two nights away from home have been so beneficial towards his independence and social skills. He has been exposed to many important factors of independence and life skills while at respite. Being away from home on his own is a huge achievement— learning to adjust and get on with different children and carers is simply priceless”.

Some unsung heroes!

“The Respite service provides routine, activities and social interaction, as well as relaxing time, delicious food and a well-structured safe environment. Massimo has also developed an engaging and warm friendship with all his carers at respite. The commitment, support, understanding and patience of the carers is priceless—they are all unsung heroes! These people are our Earth Angels who do a phenomenal job. Thank you Autism Association of WA.”

Achieving milestones once thought impossible

“In 2018 Massimo commences High School—a new chapter and new beginnings. We are so proud of Massimo’s development over the years. We are extremely grateful for all the ongoing support we receive for Massimo—all his teachers, carers, therapists and of course all our families and friends. Without their support, Massimo would not be where he is today. Over the past years we have seen unimaginable progress and change. He has achieved milestones that we once thought were impossible. Massimo is a happy, loving and affectionate young man and is so loved by everyone who crosses his path. He is now more aware of his every day surroundings; he is able to independently get dressed, put on his shoes and ask questions. He has beautiful manners. Massimo is very familiar and aware of everyday life, knows what day of the week and what month it is. He identifies the entire family, extended families and friends, follows routine and instructions and LOVES going to school. We are so proud of how far he has come” Gina said.

Happiness and peace

Gina also tells of Massimo’s hobbies. “He loves books and reading, Google maps and the street directory, loves all technology, DVDs, swimming, running, going to the shops and his most passionate interest is Perth City. He is totally mesmerised by the city skyline and to see his face light up with joy when he sees it is priceless. Anything to do with Perth City brings him so much happiness and peace.”

Don’t wait

“If we can offer any advice to new families who have just started on their Autism journey, we highly recommend Early Intervention.  Don’t wait till your child starts mainstream kindy. Every child is different and the spectrum is so broad, but if you feel there may be something not quite right, do something immediately. Get your child seen to. It will be the best decision you’ve made” Gina declares.

“We have watched Massimo grow from a little boy to a young man. We have embraced and celebrated the little things he has achieved; they are really big things in our eyes. We have hopes for his future. Finally, remember these three Ps— Patience, Persistence and Perseverance.  With these anything is Possible.”

— Gina and Pier

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