Living with an autistic child |14 April 2018

• “We still have loads of questions... what will happen to him when we die?”

Autism spectrum disorder (ASD)/autism are terms for a group of complex disorders of brain development. These disorders are characterised, in varying degrees, by difficulties in social interaction, verbal and non-verbal communication, repetitive behaviour and leisure or play activities (ASWS).

April is Autism Awareness & Acceptance month and in commemoration of this, a young Seychellois parent shares her life story as the mother of a child on the ASD.

Q: What can you tell us about yourself and your child?

A: My name is Veronica. I work at the Seychelles Fishing Authority (SFA) as the senior aquaculture officer. I'm married to Steve, who has a cake decorating business (Tica's Cakes) based at the micro-enterprise building at Providence. We have been married for almost 8 years now; we have the sweetest boy in the world and he is called Joshua.

Joshua turned 8 on March 2 and he absolutely loves the sea and watching cartoons in Russian; not sure why. He goes to the School of the Exceptional Child where he is in a small class just for kids on the ASD. Josh has officially been diagnosed to be on the spectrum since he was 3 years old. He understands mostly everything he is told but he has speech delays and cannot always respond in words (of course sometimes he chooses not to respond). Josh has speech but doesn't hold long conversations and he also can't speak a word of Creole (he speaks only English).

Q: How did you find out that Joshua was on the ASD and what happened thereafter? What was your/your partner's/family’s first reaction?

A: We actually had no idea at first; Josh is our first and only child, thus we had no one to compare him to. As most Seychellois, we had never heard of autism, we had no idea what autism meant and how it would change our lives.

It was actually a nurse that picked up on his lack of speech (communication is one of the main issues associated with autism). At one of the routine early childhood nurse visits, the nurse had a checklist that we went through together to see what Josh could or could not do. When we got to speech, she asked us how many words he had and it was there that she pointed out that he had a lack of speech (by that age he should have been saying more words). We hadn't realised that he had also lost a bit of speech (very typical for ASD); he started to say little words such as ‘mama’ and ‘papa’ well before his first birthday.

This visit was followed by numerous other health visits. The first thing we had to do was an ear test; we had to confirm that he had no ear problems before anything else. After we ruled out deafness, we went on to numerous other tests; this all happened in the United Kingdom (UK) where we stayed for 5 years as I had been granted a scholarship.

Josh had intense therapy on a daily basis (twice at the house and thrice at the nursery). We also had very intense therapy sessions with other kids on the spectrum along with their parents for a couple of months. My husband and I were also able to attend a parents training for 6 weeks where we exchanged experiences with other parents and learned from health professionals.

We had been going through therapy for over a year before we got the final diagnostic thus we knew all along that Josh was on the spectrum. But when we got the official letter from the doctor, it was such an emotional day. I cried that night, but the next day I was up as usual and ready to journey on.

I think that's what one should always remember: it is okay to break down in tears, it is okay to grieve for the child you wish you had, it is okay to get upset, because these are all part of the journey and we have to soldier on.

It was not so easy to explain the condition to our family back home and it took a lot of explaining as autism was not really well known. But, I guess everyone understood better when they met him (we came home for holiday once in the 5 years).

Q: Are you aware of what may have caused Joshua to be autistic? What kind of medical assistance did he receive at first?

A: As of yet, nobody knows what causes autism. I think it might be a combination of things. There has been no real medical assistance as autism is not a disease and thus can't be cured, however we have had many days of therapy.

We are blessed in the sense that when Josh was 6 months old, we left for the UK where I went to university, so the first 5 years of his life had a lot of intervention which helped him to deal with some of his issues. Some of the therapy was to help him overcome some sensory issues, e.g. he couldn't stand touching wet, slimy things before, so he had therapy which took him out of his comfort zone and got him used to touching wet things. The intervention also helped me and my husband to learn from other parents and health workers on how to be better parents to Josh.

Q: What signs and symptoms has Joshua displayed over the years?

A: One of the issues with autism is the inability to understand danger and this is by far my biggest worry - so much so, that we have had to find someone to stay with him in school, just so that we can make sure he is safe at all times. When he is at home, we have to be with him when he is playing outside and watch him all the time. He escaped once and ran all the way to the shop. This must have been the scariest day of my life; we had no idea where he was, so we had to split into teams to search for him. I was ecstatic when I saw him.

Q: What are your lives like on a daily basis as parents to Joshua?

A: We try to avoid large crowds as it can be a bit overwhelming for Josh. Before we take him anywhere we have to do lots of planning, e.g. timing. We try to take him to various places so that he doesn't miss out on certain activities, but we have to plan it well.

For example, we like to go to Praslin as my dad lives there (did I mention Josh adores his granddad?), but before we get to the airport, we have to do a lot of planning. We have to let the ground staff know that we will be travelling with him so we can't go early as he doesn't do well with waiting. If we're going to a restaurant, we will have to do the same plus check the menu as he is a fussy eater. We also need to check the setting, if it has a pool, how deep the pool is, if it’s close to the beach, etc.

Q: How have you and your partner tried to help Joshua cope with his condition? How do you cope?

A: We have tried various therapies, e.g. speech and occupational and read loads about coping techniques. We even have dentist therapy; Josh has the most amazing dentist, she does a lot of familiarisation sessions with him so that he gets used to the dental van because it takes him a long time to get used to places and people. We have tried and keep trying everything possible to give our son the best quality of life possible.

Josh has a lot of needs and his needs are constantly changing, e.g. one minute he might like a type of food and the next, he might never want that food ever again. Because of his limited speech, he can't always tell us what he wants so there's a lot of guessing.

We have good days and not so good days, but whatever the day, we make sure we're in it together. My husband and I work as a team, we know when one needs a break and thus allow each other to recharge. When we're both overwhelmed, my mum takes over.

Autism is a journey and can be overwhelming at times. We all deal with it differently but what is common, is that one would need a reservoir of patience, one step at a time. Make time for yourself; my alone time is in the evening when everybody is in bed. I will have a cup of tea and watch SBC (I love SBC).

Q: What about Joshua makes you and your partner smile, feel proud and feel that everything has been worth the effort?

A: For me it's always very emotional when Josh recognises others’ feelings and feels empathy towards them. For instance, when he understands that he has done someone wrong and actually goes up to the person to say "I'm sorry", accompanied with a hug (not being biased, but my boy gives the warmest hug ever). Josh is a very affectionate and super sweet child; he is full of love, so when he loves someone he will give them loads of hugs and warm caresses to show it.

Lately, he has been doing a lot of role playing on his own while playing with his toys. He would make conversations, sometimes long ones, with his toys and make them ‘talk’ to each other - for us, this is a major milestone and it warms my heart each time.

Q: Have there been any particularly difficult moments for you?

A: There have been a few incidents, whereby other people have said some hurtful things (especially when he is impatient in public places) but we blame it on ignorance.This is why we do our utmost to create more awareness among the general population.

Q: Did you imagine life differently when he was first diagnosed? 

A: When he was first diagnosed, we had loads of questions and we still do; is he ever going to be independent or is he always going to live with us? Is he ever going to find a partner and set up home with kids of his own? What will happen to him when we die? Will he have friends? We don't know the answers to these questions, so we can only pray for God's intervention.

But one look at him and we see and feel how happy he is. I especially love his giggles; he is always giggling.  I've never seen him angry - yes he gets upset, but just for a few minutes. You'll also never catch him hitting another child intentionally.

Q: How have family members and friends reacted towards Joshua’s condition?

A: The first proper family set up that Josh understood was that of a South African family we know in the UK (Nadia, Wayne, Mellisa and Marsha) as he was too small to understand the concept of family when we left Seychelles. That family has been our rock for the first 5 years of Joshua's life; they were there through the different milestones, they cried with us and they celebrated with us.

Then of course there's my mum who adores Josh. She helps us a lot with him and I honestly don't know what we would do without her at times.

I have 3 cousins (Ellery, Ella and Nathan) who are still little. They interact most with Josh and they love him dearly. At the beginning, it was a bit difficult to explain autism to them and they couldn't really understand some of Joshua's actions, but we've taken time to explain the condition to them. They still have questions but now they understand him better and they are also able to explain it to other people.

Q: Do you have any messages for others living with an autistic loved one?

A: I like to describe autism as the comparison between windows and mac computers; they have different programming and they process differently, but in the end they are both computers and will give you more or less the same end product. So it doesn't matter how long it takes for one to make progress, as long as we keep progressing, we keep pushing and we do better.

If you have a loved one on the spectrum, find other people to talk to. Autism is not the end of the world, it's just a different way of seeing the world.

Q: What are your hopes for Joshua for the future?

A: My only wish is that Josh will be forever happy and that he will always be surrounded by people who genuinely loves him.

Reference: Autism Support of West Shore (ASWS)