Interview with Valerie Brincat, PR representative of the Autism Parents Association in Malta

[ 0 ] 29/03/2014 |

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Valerie Brincat
is the PR representative of the Autism Parents Association in Malta,  a non governmental association, designed to help and facilitate the process to families with children effected by Autism. She is also the creator of Twiggle Land Learning Activities. Twiggle Land Activities are designed for typically developing children, and have also been specifically adapted for children with all sorts of learning difficulties. Schools have purchased her activities for the hearing impaired, ADHD, down syndrome, even for foreigners learning English as a second language (click here for testimonials).


-Tell me about yourself, your family and your advocacy for autism.

My name is Valerie Brincat, i am 39 years old. I was born and raised in Canada, but have been living in Malta now for 25 years. I am married and have three beautiful children. My son Craig and my fraternal twin girls Yvonne and Hope. My three children have been diagnosed with Autism Spectrum Disorder, though their grades of Autism vary. Being a parent of three children is tough, but when they have special needs, it can be a bit more challenging! The anger you have at first, the denial and grieving process is overwhelming, and finally choosing to accept the situation and dealing with it the best way possible. Through my struggles to defend and speak for my children and their rights, this has made me the person that I am today. The struggles and obstacles that i have overcome have made me a much stronger (emotionally and mentally) parent. With this I try to inspire and influence other parents of children with Autism too.

 

-How did you suspect and later on find out that your children were on the autistic spectrum?

My first child, who today is 12 years old was diagnosed at age 3 1/2 years old. To be honest, back then I had no idea what Autism was, and never expected it to effect my life. My husband would arrive from work, but my son showed no reaction of joy or surprise! We would call his name, bit he would never react or turn toward us. He was very passive. He would sit in his playpen for hours if need be, and never cry for neither affection nor for his bottle. He had no speech at age 3 but just jargon. My husband and I decided it would be best to take our son to the Ear doctor, to check his hearing. But it was strange that he wouldn’t respond to his name being called, but many times would run to the television to hear his favorite commercial, with very low volume.  The ear doctor had pointed out that it was not a hearing problem, as my son’s hearing was fine, but maybe an psycological issue we are dealing with. He and my son’s speech therapist referred us to the CDAU (Child Development Assessment Unit) for a full assessment. After one whole year, the CDAU diagnosed him with Autism. The process was similar for my girls  though i was much more attentive for the symptoms the second and third time round, since now I was aware of the condition. In fact, they were diagnosed at a younger age.

 

-What sort of help do you get from friends/family?

Building a strong support system is crucial. We help our children the best way possible, but somehow are ashamed to ask for help for ourselves. I learnt this the hard way, until finally I was mentally exhausted and couldn’t take any more of it. So, i started asking relatives and friends for help, like babysitting, or help with chores, etc.

 

-What is it like raising a child with autism?

Raising a child with Autism is exhausting, challenging but very interesting. We never have a dull day at home. Our kids are very special.

 

-What was the most difficult thing to deal with so far?

That’s a tough one. Probably the time when my son was suspended from school for an entire month because of his challenging behavior and incapability of the school system to handle it properly, because of lack if interest and insensitivity to parents of children with disabilities. But that was a few years ago and i really don’t like to remind myself of what had happened back then.

 

-How would you describe your children’s everyday life?

Very structured, routine but they are very happy! Never a dull moment at home.

 

-How do you see your children’s future as grown-ups in Malta?

Hmm, no idea. Hopefully independent, and happy! This is something that I am working on now. Teaching functional life skills to them and involving myself with the Autism Parents Association, to work hard for our children’s’ futures.

 

-How many people with autism are there in Malta?

There are no statistics in Malta of the amount of children. But there is a lot, and increasing every year. The prevalence abroad increases every year too.

 

-What sorts of support are there from government or the medical system?

Government Support? There is the disability allowance every three months. This helps compensate with a fraction of the expenses that we have. Nappies for those who have children or adults who are still incontinence. The Health Department does provide Speech and Occupational therapy. Two very important interventions for our kids! But unfortunately, there are so many cases, and so little human resources that appointments are to far apart. Agenzija Sapport provide Community Service to families with children with disabilities, where they do a few hours a week at the family’s home to help. But again, not enough human resources and the waiting list is never ending.

 

-What kind of support is available from schools?

The educational early intervention support is good until the kids are 5 years old. This is through the Educational Student Services. The Student Services Department also have a great ACTU section (Augmentative Communication Therapy Unit). Very trained and qualified team, but the same…. The waiting list is too much and our kids need EARLY intervention…. We cannot waste any crucial time! Regarding support at the schools? Well, there are dedicated and qualified learning support assistants, but there are alot that need much more training. Supporting children with Autism is very hard work and needs to be specialized. Unfortunately, neither the LSAs, nor teachers, nor the administrations of our schools are qualified in Behaviorial Management. What they are to do when our children have challenging behaviors. It is important to bear in mind that behaviour has a function and that there could be a number of reasons for it. Especially, if the child is non-verbal. There are times, administration would call the parents, even if they are at work… to take their children home as the school is unable to handle the challenging situations! Behavioral Management training is very necessary to all professionals, especially in the schools…including the main stream and especially in the Resource Centers and Adult Training Centers! This training should be updated continuously!

 

-What happens to families with children on the the autistic spectrum who are poor and what if they come from well-off families?

If the families are poor, you cannot help your kids properly. You use Government services, which as I said earlier are useless if you don’t have consistent appointments. An appointment of 40 minutes, every two months will not help our kids progress. To send our children to an NGO for therapy is very expensive, especially if it is not subsidized by the Government! They either have to apply for financial help from the MCCF or sponsors, which is very difficult to acquire. Therapeutic items such as weighted blankets, or softwares are expensive too! So they can do very little if they are not creative themselves. If it is a well-off family….. Well, there is whole lot more you can do. If I had a lot of money, i would send my son to therapy like ABA twice a week (which is roughly €50 for both sessions), i would hire a private tutor to help my kids with their functional life skills at home and at public places, like restaurants, etc… Occupational therapy and speech therapy…every week (which each session would cost € 20 each). I would buy a house with a pool, a large trampoline and make a room into a Multi-sensory room! If A family is well-off…. There is a lot to do!

 


APA logo2-Parents in Malta seem to be organized. Please shed some light on the mission and services of the Autism Parents Association. 

The Autism Parents Association (APA) is a non govermental association, designed to help and facilitate the process to families with children effected by Autism.

APA has been set up, by parents of children diagnosed with Autism Spectrum Disorders. We currently have 120 families members in the association all of whom are parents of children with the spectrum of Autism. Though we have a secret support group on Facebook which consists of 420 parents. This Support group has become very successful as we are helping parents in the comfort of their own homes.

The aims of the Association is to create awareness in our local Society, since Autism is a condition which is not visible and the number of children being diagnosed with (ASD) Autism Spectrum Disorders is on the increase year on year. Unfortunately, parents pass through lots of hardships primarily to obtain diagnosis and secondly to identify the needs of their children.

As an Association and as clearly highlighted in our “Statute“.

-What is the vision and the plans for the future of the Autism Parents Association?

We would like to create more opportunities for parents to become educated in developing opportunities both locally and hopefully internationally.

 

-You are the creator of  the Twiggle Land Learning Activities. Please share with us how did you come up with this idea and how do they help kids to develop their skills.

As a mother, I understand every parents desire to help their children achieve their full potential. Through my personal experience, I have realized that children love learning when they get to hold something and take action during the activity. Involving the children keeps them motivated to learn.

I started making visual activities for my three children. I would stay up late at night finding suitable images.  Printing… laminating… cutting each picture and placing velcro on the backs of each one.  Whew! So exhausting! I would spend hours in my kitchen snipping away. My kids were always very enthusiastic to see new activities because they really enjoyed learning with the resources I made for them.
Then I realized that I wanted to make these activities for others. Those parents who couldn’t find the time due to today’s hectic and busy lives. Those parents who are not computer literate. The same with all the professionals and carers. I thought to myself “Wouldn’t it be great to just find the resources… ready made, and purchase them! On your way and ready to go and teach your children!”.
-‘Light it up blue’ event on the 2nd of April, Castille Square, Valletta. What is it about?

World Autism Awareness Day (WAAD), celebrated on April 2annually, was adopted by the United Nations in 2007 to shine a bright light on autism as a growing global health crisis.

Each April 2, Autism Speaks and more than 100 countries around the world celebrate Light It Up Blue in commemoration of the United Nations-sanctioned World Autism Awareness Day.

Light It Up Blue is a unique global initiative that kicks-off Autism Awareness Month and helps raise awareness about autism. In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores are among the hundreds of thousands of homes and communities that take part to Light It Up Blue.

This year, for the first time Malta has officially registered with Autism Speaks’ campaign and will be lighting up a Maltese Landmark blue. Castille. The ceremony will start at 7:45pm. Those who wish to wear blue shirts are welcome to do so.
The Autism Parents Association are organizing many more events during the month of April and we encourage everyone to check out our website calendar for more details.

We would like to invite everyone, those families who have been touched by Autism and the general public to join us on this grand and memorable event and show support to our children and all persons effected by this Autism epidemic, which researchers announce bewildering increases every year.

On the 27th April we are organizing a Fun Day for our children, siblings, families and general public at Mdina Ditch (maltamum note: more info will follow in due time).

 

Relevant links
Autism Parents Association – Malta website
Official Facebook page of APA
Twiggle Land
 website
Twiggle Land on Facebook

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Category: Interviews, Resources for Malta Mums

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