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Fearless Female

Ten questions with….Thea Furbert

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Thea Furbert and her son, Cire'. *Photo supplied

There are so many words to describe Thea Furbert, but her most coveted title is mother. Thea, 50, is the mother to Cire’, now 21, who was diagnosed with autism as a toddler in the late 1990’s, when very few knew or understood what the condition meant. Facing the unknown, Thea decided that she could not sit around and wait for information to drop in her lap. Instead she absorbed all she could so she could understand her son’s diagnosis. She then went on to co-found Tomorrow’s Voices, which has become a lifeline for hundreds of families in Bermuda. After a rewarding and hectic month balancing life and celebrating Autism Awareness during the entire month of April, she found a few moments to share her journey with SheHub.

Why did you decide to start Tomorrow’s Voices? What was your vision? I decided to start Tomorrow’s Voices because there was a lack of services in Bermuda when my son was diagnosed with autism. We (me and Paul, Ciré’s dad) were overseas at Boston Children’s Hospital and the doctors said that Ciré needed applied behaviour analysis, occupational therapy, speech therapy, and a number of other services that we had never heard of before. It took two days of testing for us to receive the diagnosis of autism and after that the doctors said, “If Ciré was going to have any chance of a normal life he would need early intervention.”

I was like, wow, where am I going to get all these things, especially since I had never heard of any of these terms before. So Paul and I came home with Ciré and we had to search and figure out what steps we needed to do in order for us to get our child the services that he needed. We started looking around and found speech therapy through a private speech therapist; he received occupational therapy through the hospital. But applied behaviour analysis, which was one of the major therapies that he needed, was nowhere to be found.

In creating Tomorrow’s Voices, I just wanted parents to have a place where they could bring their children to obtain the services they needed, where they would feel welcomed, supported and safe; a place they could find support from other parents and trained therapists with many years’ experience in the field. However, the vision for Tomorrow’s Voices came many years later. Trish Simons, my sister, Erica Smith and I were talking and felt we needed to create a Center for children on the autism spectrum.

Trish and I hired private therapists from overseas who were providing services to our children. We were paying thousands of dollars each month! I was probably paying about $55,000-$60,000 a year to have that one-on-one therapist for my child and many other parents were doing that in Bermuda at the time as well. We just felt that it was not okay for parents to do this on their own. They needed a place where they could bring their children for therapy and support and so that’s where the idea came from.

We wanted to create a space where parents could come and feel secure in knowing their children were getting the services they needed and that the services were having a positive impact on their lives and could lead to them having some sort of independence in their futures. So in 2006, Trish and I hit the pavement running. We went and knocked on every corporate office door we could think of. Erica assisted us in creating a business plan and obtaining our charity status.  About six months later, we had about $500,000 and so we were able to open Tomorrow’s Voices is in October 2007.

Briefly, reflect on how you felt when you received the diagnosis that Ciré was autistic? I felt lost, I felt unsure, I felt scared, I felt like I didn’t know how or what to do. I cried. We were in a hotel room in Boston right next to Boston Children’s Hospital and I just kept looking at Ciré. He was two years old running around giggling, having no idea of this diagnosis. I just cried in Paul’s arms. After that we returned to Bermuda and the fire within was lit.  We had to get Ciré everything that was needed.  In the beginning I felt scared and lost, but that only lasted a few days and then I felt that it was my responsibility to make sure that Ciré got everything he needed to be successful in his life.

Like any  mommy bear, you want to do what’s best for your child. Every day after that I knew that I could be an impact on Ciré life and give him the things that he needed and finding the things that he needed, paying for all of the things that he needed so that he could have some success in his life and be what he needed and wanted to be. This journey hasn’t been easy, but it has been worth it to see the progress Ciré has made. He is a superstar!

You were relentless in your desire for your son to be placed in a mainstream school when he was younger. Why, in light of the fact that he was a special needs child? I don’t think I was relentless in having him in a mainstream school.  There were no other schools available for him other than  public schools. There was no special schools at the time Ciré was entering public school so the option was to go directly into the regular school system.

Him having a disability didn’t really matter because there was no other option for him. It was when he got older that Dame Marjorie Bean Hope Academy school (in Bermuda) opened up and he was already in the public school system. I do remember receiving a call from DMBHA prior to the school opening, asking if I would like for Ciré to go there and my questions to them were would applied behavioural analysis therapy be provided and what did the curriculum look like.

I asked all of the questions that were necessary for Ciré to be successful in this new school and they had no answers for me. They said they would get back to me with answers and they never actually called back, so for me, that’s when the special school was never an option because they didn’t have what was necessary for Ciré to be a success.

Was there ever a time when you thought you could not cope as a parent? I don’t think so. I think I always felt like I could cope, there were many times where I got tired and I would cry and do all the things that are necessary for you to have a healthy break down. I’m sure there were times when I just felt like everything was on my shoulders or that it was hard or that things didn’t go the way I would have liked them to. But I do feel like as a parent you just do the best that you can and hopefully in the end things will go positive. I have a great support system with Ciré’s dad and my parents and my sister and the rest of my family. There have been times when I’ve cried my eyes out but at the end of that I’ve been able to always pick myself up and take the next step up and do the things that are necessary for my family and son to grow and be successful.

What do you say to people who give children who have special needs ‘the look’ when out in public? I really don’t even say anything anymore. When Ciré’s out in public he makes noises that are not the norm per se, but for me it’s just normal so it’s not embarrassing or anything like that it’s just who he is and most people are understanding. When Ciré was younger I got lots of stares from people who just didn’t understand that he had a disability because his disability was not really on the outside and he looked normal.

With autism everything is happening inside his body and really not external. So there were times when he would probably scream or do something like spinning around in a circle and people would be looking at him strangely. In those instances I would look back at them with the expressions of “Do you have a problem?” but no one’s really ever said or done anything that would have me go to the next level. He’s really had a smooth and happy life when it came to being out in the community and most people have been very understanding. But I must say that those people who have tried to give Ciré trouble have never really gotten the attention that they were looking for.  We just keep it moving because there are things that we need to do in our lives and those who are not understanding probably will never understand.

Do you ever really have down time?  Yes and No. Every Saturday I take the opportunity to have downtime, meaning I do not do any work attached to my design company or Tomorrow’s Voices. I try to relax. I watch TV, read and sometimes sleep late, all of the things that you do to relax.

However Ciré is still with me and so I do have to take care of his wants and needs as well. He doesn’t have the ability to make his own food or do day-to-day things. He can’t manipulate his own TV and so he comes to me for those things. He asks me to get him lunch or if he wants a snack he comes to me and I help him get his snack and so I’m always on call when it comes to him. He’s my son and he needs support and so I have to be available to provide him with that support because he is not able to do it on his own.

But I do think that it is in these moments that I have the ability as a parent to teach him to take care of his own wants and needs, so these become teaching opportunities for him to go and make his snack with my guidance. Two thousand and eighteen was an exciting years as I was able to go on a number of trips on my own, which I hadn’t done in a long time. I got to go to my goddaughters graduation in the UK and I went to New Orleans on a trip with my sister.  On these trips I was able to have some downtime and time to just relax, recoup and regenerate. I valued these trips because sometimes as parents we don’t have the ability to have time to ourselves. But I could not have been able to take these trips without the support of Ciré’s dad and my phenomenal family who were able to take care of Ciré while I was off island.

How do you know that Ciré is happy with you? That is a great question because sometimes I don’t know. At times, his expressions don’t change so it’s very difficult sometimes to know when he’s happy, especially because he doesn’t talk. But there’s other instances where he is giggling and has a big smile on his face and hugging me and hugging his dad and his facial expressions are illuminated with such happiness that I know that what we’re doing for him and with him make him happy.

I see the happiness in him. I see that he loves his family and he’s always around us. He’s always interrupting us, he’s always putting himself in the middle of things so that we know that he is a part of this family. Behind the scenes we get to see him giggle all the time, we get to see him hug us all the time and he shows us that we are making him happy and that he is feeling happy and those are the best feelings ever.

Were you ever afraid that the doors of TV would close? How did you not lose faith? There have been many years when I thought that the doors of Tomorrow’s Voices would close. There were many years when the funds coming in were getting less and less and we had staff to pay and children who needed services. But in the end it always happened.

We were able to get funding to keep the doors open; we stayed positive and no one ever gave up and I just think that because we knew that Tomorrow’s Voices was going to always have a positive impact on our community and be able to change the lives of children and their families we just never gave up. But there were many tears cried, there were many days when the team would think how are we going to get additional funding to make sure that the we don’t close, so that families wouldn’t suffer.

There were many stressful nights but we kept the faith, we knew that we were making a positive impact on our community and so my thoughts were to always think positive and that it would be fine. What we were doing was the right thing and so each month, each year, funds would come in so that we could stay open and be an impact on our community.

When you reflect on the good that TV has done in the community, how do you feel? It’s a feeling that I don’t think I could ever communicate. I love what we do at Tomorrow’s Voices and I do it because I know that it’s necessary. I know that it’s needed and if I didn’t do it, who would? If our team didn’t do it, who would and so it makes me feel happy and overjoyed that we are making such an impact on the community, with children and babies, giving them the opportunity to have wonderful lives because they deserve it.

I am happy that I am able to give of myself, volunteer my time to help children and families have a great start in the process of being affected by autism. And I don’t take that for granted, I just love that we’re able to do this and provide the support that parents need. Another great part of why I know we’re doing such a wonderful thing for this community is that I get to see the results of intervention. I get to see when a child first starts a Tomorrow’s Voices and they don’t talk, they don’t look at you, they can’t settle or stop running around, and it just looks like they don’t have the ability to learn. But by week two they’re starting to looking at you, they’re starting to point, they’re beginning to make sounds. Then in a few months they’re giggling and they’re having some form of communication that they didn’t have before.

Their parents are coming through the door with smiles and tears because they’re seeing an impact on their child that they have never seen before. Those are the moments that I know that we are doing a fantastic job and it’s because of those moments that I know that Tomorrow’s Voices is such a special place for our families and our community, because were making a positive impact in a child’s life.

Words of advice to a parent who is at the beginning stages of the journey as the parent of an autistic child? Well my first piece of advice to any parent is to allow yourself to have feelings. Cry, scream and shout, ask why me, feel scared and angry, do all of those emotional things that are necessary for you to feel because it’s a hard pill to swallow. Your child is going to have to fight hard throughout all the stages of their life so go ahead and do all of the things that you feel are necessary to grieve for your expectations of what you thought would be the journey for your child and yourself.

But at the end of that seek support, ask questions, research autism, talk to other parents, find out what is necessary for your child to be a success. The journey is not an easy one!  It is sometimes very difficult and emotional and the things that you might have wanted for your child may be a little difficult to get at the beginning, but they are achievable. You will have do your research, you’ll have to go to classes on autism and you’ll have to grow to be a knowledgeable parent. Without that knowledge you will experience the expectations of others and it’s only through learning about autism and all of the things that affect your child that can give you the knowledge to make decisions that are the best for your child, decisions in a classroom, decisions in the community, decisions in a therapeutic setting.

You’re going to have to be the most awesome advocate for your child and with that advocacy, you will see success. Don’t be afraid to communicate how you feel and what your concerns and worries are. What I love so much about the team at Tomorrow’s Voices is that they’ve heard every story, they’ve seen the tears and it’s about being a friend and family for all of those parents who walk through our doors, it’s not about being judgmental.  It’s about accepting every parent for who they are and watching them grow, watching them understand more about how their children learn and then watching them become advocates, watching them fight for all of the things that they know that their child needs.

I think that every parent has the potential to be an advocate for their child, I just think that it takes you as a parent to say I’m ready.

 

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