Right from the Start

Cass and Shannon

2010-04-15T14:24:00.001+10:00

Cass and Brad Knight are the dedicated parents of Shannon, aged 10, who has cerebral palsy, and six year old twin boys. Their idyllic dream of living on Magnetic Island was shattered not long after Shannon’s birth, when it became obvious there was a problem. Cass’ personal experience working within the disability sector prompted the families move, as she was aware how poor services were in Queensland. They knew Melbourne or Sydney were their only options if they wanted to provide Shannon with the best services in the country.

After being revived 20 minutes after birth, and spending three weeks in hospital, a junior doctor advised Cass and Brad of Shannon’s long-term prognosis. Cass explains that her mind was unable to cope, shutting down and going into denial for months afterwards. Even when cerebral palsy was initially raised, Cass held fast to the belief that with much work, therapy and pro-active involvement, she could fix Shannon. She hoped she may lead an independent life.

This belief led to Cass setting impossibly high standards for herself. These standards would lead to mini burn-outs and then guilt for slacking off. With the emphasis on early intervention by the experts, there is urgency for intense therapy in the first six years, with each specialist outlining a unique therapy regime for the home environment. In the end Cass was doing between three and five hour’s therapy at home a day, leaving little time for the child to be a child.

It was doctors at The Royal Children’s Hospital who finally assessed and diagnosed Shannon with cerebral palsy at one year of age. An expert team lead by Gordon Bakey, Paediatrician, advised the therapy and equipment that would be useful for Shannon.

Cass had no difficulty accessing early intervention servicers, and is quick to commend the professionals that have worked with their family, teaching them to work with Shannon to understand her non-verbal cues and communication. As Shannon is an intelligent and mature child, she is grateful to have a communication system that was pioneered by Gayle Porter and two other speech therapists at the Cerebral Palsy Education Centre, as without this no one would have any idea of Shannon’s intelligence and she would be trapped in her body like others suffering from this condition.

Shannon cannot sit unsupported, cannot feed or dress herself, and cannot perform any normal life functions. She will always need full-time care. Despite frustration with the length of time her communication takes, Cass is happy that at least she has this capability.

Like many before her, Cass explains that disability becomes your life, and is a full-time job. She explains the grief families suffer is not the usual type of grief, it is ongoing and non-finite, and different stages present at any time. This prevents many families from being pro-active as not everyone is in a state to seek out the help they need, and grief and depression can debilitate.

Cass was fortunate enough to get service through Noah’s Ark, Scope and CPEC and while she is very satisfied with the service she has received, she understands there is still a shortfall in the funding of therapy. At present, any funding she receives for Shannon does not stretch far enough to cover equipment. She has to raise these funds elsewhere.

Cass is a positive, pro-active, intelligent woman who has been humbled by her experience and the people she has met along the way. Despite this, disability has had a huge impact on her personal relationship, changing the dynamics from partners to co-workers under the enormous demands placed on their family.

Welcome to the Right from the Start Blog

2010-03-02T14:05:00.003+11:00

Welcome to the Right from the Start Blog. We encourage you to share your own stories on this blog as well, and you can do so by commenting on the blog posts here. Just click on a blog post (from the links to the right), and then scroll down to the bottom of the post and add your comments there.

We have had a couple of very interesting comments added so please check them out at the bottom of the blog posts!

The Brown’s Story

2010-02-25T22:59:00.001+11:00

Single mother Kylie Brown, raising five year old Darcy, said she had known for a long time that something was wrong with his development, but despite this, the doctors kept reassuring her otherwise. After 12 months of searching for answers, Darcy was diagnosed as having cerebral palsy and autistic features.

‘Early on, shock and paralysis set in as the weight of Darcy’s diagnosis sunk in. I was unsure what to do, which way to go and what it was all going to mean. I searched the internet for every piece of information I could find. I wanted to know what could be done, where I could go for help and whether he could he be fixed,’ Kylie explains. ‘The little I knew about cerebral palsy frightened me as I didn’t know then that there was a scale and that he wasn’t necessarily on the extreme end of it. I cried for the first six months after his diagnosis. It was horrible.’

Kylie waited four months to access early intervention at Illoura House. She relied on her own research throughout this time. The only other support she received was an assessment and a single physiotherapy session, which served to frustrate her further, as the information provided was too broad for her to gain a reasonable understanding of what to go on with during the waiting period.

‘I had no idea where to go or what to do. I was told to go to Illoura House, so that’s what I did. When we got there, the services were very good but there just wasn’t enough of it, especially physio. With early intervention, the more you give your child, the better the outcome. One session per week or fortnight is not enough, particularly when they need other intervention like occupational therapy and speech as well.’

The professional assistance Kylie received through Illoura helped ease her sense of isolation, and a partnership was formed to ensure she received adequate support and guidance. As a single mother, this support proved invaluable as their advice and experience helped shape the strategies Kylie now uses at home to help Darcy develop.

Even so, Kylie still has fears about Darcy’s physical development, particularly due to the infrequency of intervention. The rest falls to her. It is well known that children with cerebral palsy who receive consistent and regular treatment show significant improvements in physical abilities. The current expectation is that physiotherapy treatment be taught to overworked parents, who then provide this therapy in addition to an already exhausting regime. The system places additional burden on families, who wonder what the future would be like if their child received adequate treatment.

The ongoing grief and frustration is compounded during transitional times such as kindergarten. In Darcy’s case there have been significant problems with inclusion at kinder. Whilst enthusiastic and well-intentioned, his kindergarten teacher lacks the skills to manage integration, and Darcy has often been left outside the group. The lack of early intervention visitation severely impacted his experience. Input and guidance could have provided early resolution for many of the issues.

‘Disability becomes your life’, explains Kylie. ‘You go on a totally different journey than you ever expected, and experience things you would never have otherwise. That’s both a positive and a negative. It’s emotionally draining and heartbreaking at times, but when your child achieves something new, the reward is sweeter because you know the effort that went into that achievement. I am afraid for the future beyond early intervention. Paediatric physiotherapists are few and far between so who knows what will happen for Darcy after Illoura.’

The Lucidi’s Story

2010-02-25T22:58:00.002+11:00

Danni and Andrew Lucidi, parents of seven year old Julian are still unravelling the complex disability their son was born with. For now they consider Global Developmental Delay, specifically Congenital Myopathy his primary condition. This debilitating condition affects his muscle and brain development. More recently, Julian fits into a new and rarer category called muscle-eye-brain disease. This is due to recently discovered retina detachment in his eyes.

Julian crawled at age two. He is mobile now, but didn’t start walking until four and a half. He waddles and tires easily but it was a relief for the family. Running still takes effort, and he can’t jump, but the achievement was very exciting.

Diagnosis occurred at eight months, when Danni realized he was not reaching his milestones. A nagging sense of something being wrong plagued her, but she still recalls deep shock because she wasn’t expecting a lifelong condition. A world of learning opened up, a world of different specialists and families, one that changed her life.

The family experienced no waiting time with Norparrin early intervention because Julian was diagnosed early. Danni considers them fortunate, particularly as she hears more and more stories about long wait times for new families.

‘We’ve been lucky with Julian accessing intervention, and with aides and equipment. I’ve never had to pay for equipment as it’s been available through re-issue at the Children’s Hospital. The system isn’t an easy one, and you find things out as you go along. When you start looking for something, someone makes a suggestion and you’ll learn about an existing service. Now I hear about people having to fork out for their own equipment, it must be difficult.’

When Julian started intervention, Danni was surprised that therapy was conducted in groups of eight, with the physiotherapist getting around as she could. They believe Julian would have benefited significantly from one on one therapy, as well as increased intervention hours. Julian has also been in private speech therapy for the past four years, because Norparrin couldn’t meet his development needs with their current system of group therapy.

Danni speaks highly of the professionals and knows they provide adequately considering workloads and resources. ‘They worked him hard and so he didn’t really like it much, but it was worth it in the end. And intervention isn’t just about the children, they’re big on family support, and even had a sibling program for my daughter, who loved going. They provide support during tough times. My heart breaks for families on waiting lists because the children are missing out. It’s so important they get intervention.’

Danni believes each centre should provide families with a checklist of local services and government entitlements. Overloaded families find navigating the system a complex and time consuming process, something that complicates matters further for families coming to terms with disability.

Reflecting on life without intervention, Danni says, ‘we wouldn’t have had access to equipment, or our kindergarten. They were a huge support, without them, I don’t know. They taught me how to help and work with Julian. Would Julian be walking now? I don’t know.’

Julian’s diagnosis changed Danni’s life and she now has greater appreciation for most things. Her heart is open to children with disability. To see Julian walk was one of the greatest highlights, but the not knowing how his future will unfold worries her in the quieter moments. She is determined to live in the now though, and to give Julian everything she can to create a normal life.

The Stuart’s Story

2010-02-25T22:58:00.001+11:00

Carly and Grant Stuart tried several years of reproductive technology before falling pregnant with twins. Their son Laughlan, now two years old, is the surviving child from a traumatic pregnancy. Born at 25 weeks, Laughlan has been diagnosed with quadriplegic cerebral palsy. He may never walk, never have enough control of his arm to feed himself, and will probably have cortical visual impairment. As for intellectual impairment, they will have to wait and see.

Despite the devastation and grief the Stuart’s have endured, Carly remains a source of inspiration and strength, speaking with gratitude about their experience.

‘As bad as it sounds, we were in the fortunate position of knowing very early on that we would have issues. We didn’t have to take him home and learn that something was wrong. We were also extremely lucky with family support, my mum is a social worker who worked at the Royal Children’s, and Grant’s Dad is a GP with excellent diagnostic skills. They knew where to go to ask the right questions. I don’t know what we would have done without insider knowledge of the system.’

Carly’s gratitude is born from an understanding of the complexity and difficulty of accessing early intervention for children with severe quadriplegic cerebral palsy. She tells of friends who have waited 12 months with little intervention support. The system is a minefield and a maze. Parents dealing with this condition are too exhausted, traumatized and distressed to find the energy to hunt for some of the services. Carly herself gets up five to six times a night to attend to a screaming Laughlan, and meal times take 90 minutes to complete, a daily act of service to help Laughlan avoid a nasal gastric tube.

Cerebral palsy funding is minimal, and children in need of daily physio, occupational therapy and regular speech receive a one hour session every two or three weeks. While Carly praises the staff assisting her, she explains that by the time you talk through equipment needs, the next stage of helping Laughlan with home therapy, his eating, drinking, movement, speech and intellectual development, there is no time to get physical work done.

While the model is that the trained staff teach parents, the big gains come if the parents have good practice with their kids, the reality is that Carly is not a trained physio or OT, and there are things that she can’t do. Therefore the Stuart’s have to privately fund most of Laughlan’s ongoing treatment. All research and parent care guides for children severely affected with cerebral palsy say that early intervention is the key to how functional and self reliant they will become, and the early years are vitally important. They need two to three intensive sessions are week, in addition to what parents do.

Laughlan has recently been accepted into the CPEC (Cerebral Palsy Education Centre) but Carly had to fight hard for this. CPEC is the only organisation in Victoria that still has some degree of specialty with children with movement disorders, and is in high demand. They will travel from East Brunswick to Waverley twice a week for two half days sessions. This will mean re-organising life, and the travel will create much disruption for the family. But this is the opportunity that Laughlan needs.

He will also attend a kindergarten at his childcare facility. Carly explored 20 centres before finding the right one for Laughlan. ‘The centre is fantastic, and don’t just say they are accessible for kids with special needs, they are. The founding member has a son with cerebral palsy, as does the cook, so the inclusion program is wonderful.’ Despite the time and effort it took to secure the right environment, Carly again feels blessed to have found the right place for Laughlan.

The Langcaster’s Story

2010-02-25T22:57:00.000+11:00

Bernadette Langcaster, mother to five year old Travis who was diagnosed at birth with Down Syndrome, considers her life pretty normal. Her positive outlook and love of Travis is apparent as she speaks with enthusiasm about the little ‘ratbag’ who puts a smile on the faces of those around him. She expresses little grief or sadness around the process of discovering her second child’s disability. Instead she views him as a typical child who is talented in some areas, and not others.

‘It was a little difficult but it didn’t really matter. We had Travis,’ she explains. At the age of 40, the chance of Bernadette producing a child with Down Syndrome doubled, but this did not deter her. ‘We contacted the Down Syndrome Association. They were helpful and sent lots of information. They weren’t intrusive if you didn’t want help.’

Bernadette says it’s easier to get early intervention if your child is diagnosed at birth. They were allocated a case manager straight away, and physiotherapy was arranged and conducted in their home when Travis was six months old. Shortly after, a speech therapist was assigned to assist with feeding. When Travis turned one and his paedatrician recommended early intervention, Bernadette’s case manager provided a list of centres. Bernadette made enquiries and selected the most suitable one. There was no waiting, and physiotherapy began immediately.

At Norparrin, Travis received physiotherapy, occupational therapy and later on, speech therapy. Initially the team concentrated on getting Travis walking. The strategy changed towards the end of his time and they began working on speech in readiness for kindergarten. ‘The staff are great, and I’m thankful there are people out there to help us, to teach us and to show us. Their advice helped a lot, their ideas were great and things I wouldn’t have thought of myself. Travis has improved enormously.’

Typical problems for children diagnosed with Down Syndrome include congenital heart defects, thyroid issues, low muscle tone and hearing problems due to the size of their ears. Many of the children experience delayed mental and social skills. There is no specific treatment for Down Syndrome, but there is for the associated health problems.

Difficulties arose for Bernadette when trying to source information about government funded initiatives such as the companion card, continence funding and disability parking. This information was mainly sourced through word of mouth or early intervention. There was no one place to go and no list available. Eventually she was given guidance by a thoughtful member of her ‘My Time’ team who drafted a list of local resources.

Life would be very difficult for Travis without intervention, and Bernadette believes he would be much further behind in his development without their assistance. She would like longer hours, perhaps two days a week so that Travis could experience a wider range of services, and receive intensive treatment. She believes he would benefit from that.

In general, kindergarten has been a good experience for Travis, but presented a steep learning curve for the teacher. Her knowledge of other disabilities helped somewhat, but Down Syndrome proved to be a new and unexplored entity. Nonetheless, they feel comfortable, and believe the staff to be excellent with Travis.

Meeting new people because of disability has been a good thing for the family, but the downside has been the dedication to the never-ending cycle of specialist appointments. There is little free time for Bernadette and Travis as they navigate the health care system. Despite this, Bernadette remains positive and looks forward to increased time when Travis starts school next year.

The Hartmann’s Story

2010-02-25T22:54:00.001+11:00

Libby Hartmann, mother of six year old Anthony, who was diagnosed with autism in 2005, has dedicated her life to developing a framework of experience, practice and opportunity for her son. She is driven by a need to help him function effectively in the world around him.

Diagnosis is the most difficult experience a parent will face, Libby explains. ‘Because Anthony was also premature, we had a pediatrician, and on diagnosis he provided an explanation and directed us to research resources. He also contacted Illoura, an Early Intervention Centre. Their assessment of Anthony’s needs and subsequent support saved our lives. Initially, we were naïve and uneducated about autism. Without professional assistance, we would have floundered and struggled, and Anthony would have missed many of the opportunities that came his way due to this association,’ Libby says.

‘A diagnosis of disability changes a family forever. Dreams are altered irrevocably, and fears for the future haunt you as you try to comprehend the significance of a pervasive disorder. Even when access to services is smooth, like it was for us, the focus shifts so that all efforts are directed towards your child.

‘Grief becomes an ongoing process, re-emerging at each stage, reminding you that your child is different. You experience heartache watching your child overlooked in play, or screaming about something that is every day for other children. While the impact of disability is immeasurable, little achievements, such as a child dressing himself for the first time, are celebrated as great triumphs.

‘The support of early intervention services is invaluable for families. I realized in hindsight that it took me two years to understand how autism would affect our lives. Shock, confusion, denial and a belief that one day everything will be normal were common drivers in those first years.

‘I have been fortunate to experience a range of services; early intervention, speech therapy, occupational therapy, psychology, dietician and social skills programs. Despite my fortune, and amazing input from dedicated professionals, it hasn’t been enough. I’m often referred to services that cannot help me, or who require a ton of paperwork to be completed before they meet us. Access can be difficult and costly. I waited 16 months to secure regular respite, and often it is impossible for families to get this.

‘Kindergarten also created additional stress. Whilst we had a great environment and experienced teachers, I was appalled we were only funded for six of ten attendance hours. Despite arguments about inclusion and support, it was evident that the children needed full time assistance, as well as a modified program. The search for appropriate and responsive environments becomes critical for parents under these circumstances. And again, it’s the families who are impacted as they make additional effort to secure these environments, often travelling distances to do so.

‘Anthony is now at school and accessing FaHCSIA funding to assist him regulate his sensory needs, improve his language and develop better social skills. We recognize that the ongoing support of professionals is paramount to building a strong foundation to help Anthony function in the world. The disability community, including families need support and assistance, because with it, our children stand a far greater chance of being successful. It is important that we recognise this.’