How to make Enabling Good Lives Vision a reality 

James and Mantar

James Young moved in his own home in 2017 after years of planning by his parents to get the right flatmates, funding and support. KAYE YOUNG hopes this story will help other families on a similar journey.

In 2013, our son James was 18 years old and had three more years of school. Already I was starting to worry about what on Earth he was going to do when he left school.
The same year Enabling Good Lives was launched in Christchurch and I was excited to learn what they had to offer, but sadly only students in their last year of high school were eligible.

The following year, our youngest son started University and left home, and without other support, my husband and I found it a struggle to have a life of our own.
James has Down syndrome, autism and Coeliac disease and on top of that is nonverbal. This meant he could not be left on his own and any breaks for us had to be planned in advance.

We relied on a wonderful carer living in Greenpark, but looking for carers who could help James on weekday evenings became problematic as our ties with high school got smaller.
Enabling Good Lives was a godsend. I attended workshops on “Building a Great Vision”, “Networking and Circles of Support”, and encouraged them to run workshops on housing.
We felt that flatting and moving young adults with a disability into their own living arrangements was an important part of having a good life.

When I finished my job at Parent to Parent in May 2014, my focus turned to the plans for James after school.

Enabling Good Lives responded by running four workshops for families who were looking to establish a new home for the disabled family member. They covered: Creating our visions, Community Resources (WINZ, CCC Social Housing Unit, CCS Disability Action, NZCare, Lifemark Design), Legal stuff and Where To From Here.

The workshops highlighted that there was little housing for young people with a disability in the community and the Christchurch City Council had no social housing as the priority was homeless families after the earthquake.

It crystallised our thoughts that we needed to organise a house of our own in a location of our choice with flatmates that James knows, in order for him to move out from home.
Parent & Family Resource Centre in Auckland had put out a booklet Four Go Flatting and it is an invaluable resource. This booklet guided and formulated our thoughts, but we quickly decided that we did not want to be an employer of staff.

We wanted a model that was sustainable and did not rely on us always being there and our thoughts were that a residential provider would provide the staff in our son’s home.

We did not know where to start, so we visited residential providers in Christchurch. Despite high quality of care and homes, we felt that six or more residents in a house and the average age of residents over 40 was too big a gap for our son.

Despite our vision of a residential provider providing staff to a house we had purchased, that was still Plan B and the much easier option was to get James into an existing residential provider.

In September 2015, our NASC assessment was done and we were surprised to be turned down for a residential subsidy given that James is far more delayed than others we saw in residential homes.

Surprisingly, the Notification of Service Coordination letter left out the two most important goals:

“I would like to live independently of my family and I will need 24-hour support when I move to a new home.”

“I need a transition from school to vocational activities or activities that I enjoy at the end of 2016.”

After writing to the NASC, the goals were included but the funding remained unchanged. This just made us more determined to purchase a house, find the flatmates for James and go back to the NASC with another 3 families with a comprehensive plan.

Now it was 2016 and James’s last year at school, which made me more anxious.

In February, we went to a meeting with EGL to find out who was available to be our EGL Navigator.

In March, we met with staff from Hawksbury Community Living Trust who were able to address some of our concerns and provided us with information for our original plans to build a purpose-built house. “Four Go Flatting” suggested that the home is no more than five minutes from the family home, so we started looking at existing houses as well as sections in Halswell.

Hawksbury CLT staff met James a couple of times and a meeting around Flexible Funding that same month gave us encouragement on how to move forward. The Flexible Disability Support funding would enable families to enter into an agreement with a residential provider who would hold the funding and provide staff in a family home to look after a person with a disability.

In April 2016, we called a meeting with parents from James’s high school class, who had sons who could be prospective flatmates for James. We explained our vision and offered to prepare a plan for our four young men in their own house.

A week later we had one family on board, one that decided not to continue and one that would only commit if the best friend of their son was able to be part of the group. The best friend was in the same class as James and his family gave us an immediate yes.

We felt very happy with these flatmates for James, were confident they would get along, but did not know whether the four would bring in enough funding if it was pooled.

All four young men are mobile and we knew that we did not need a purpose-built house. We looked again for four-bedroom houses with two living rooms plus another room that could be used as a bedroom for staff.

Almost immediately a house popped up near the Halswell Domain which looked promising. Not only were the bedrooms spacious, the study was big enough for a staff bedroom, the house had 2 living rooms, was made of permanent materials, had a separate laundry, double garage, was fully fenced and had an easy-care garden. It was just what we wanted.

On May 20, 2016, we were the proud owners of this house. We set up a trust to purchase the house and we naively thought that James could be a settlor of the trust and that we could use James’s savings. However, because we are joint Welfare Guardians for James he is not a legal entity and we were not able to settle James’s money into the trust nor was he able to own a house because he is not a legal entity.

The families met with the CEO of Hawksbury CLT and worked out the number of hours the young men would need support and used that to calculate the budget. This information formed part of a document Roger and I put together called an Independent Living Plan. This document included one page on each young man, their vision and background, information on the house, type and hours of support required, budgets and contact details.

We took this plan to a meeting with representatives of NASC, EGL and Hawksbury Trust to demonstrate that four families were all serious and intended for their sons to go flatting together in 2017 in the house we had purchased.

NASC than assessed each of the young men to determine their Enabling Good Lives Personal Budget. With EGL, James’s Flexible Disability Support funding from the Ministries of Education, Health and Social Development would be brought together into a personal budget. Instead of Carer Support days or MSD funding, James would have one pot of money which simplified matters enormously.

In the meantime, the families worked with Hawksbury CLT to determine that the budget we had calculated fitted the vision each family had for their son. Once all families had heard back from the NASC, the four families met and added up the four personal budgets. It was an enormous relief to find that figure was enough to cover our budget based on having one staff person in the house to support the young men at all times.

The families agreed on a moving date of April 3, 2017 and NASC agreed to align the annual review dates of the personal budgets to April 1 to make budgeting easier.

Roger and I had created a draft Memorandum of Understanding, which is not legally binding but which captured in writing all the important points the families needed to agree on. The MOU covered the background and purpose of the house, agreements on how the house would be run, liabilities, how we would settle disputes, and how the arrangements could be reviewed. In November, 2017, the MOU was signed by all parties.

Hawksbury CLT had been excellent to deal with and had spent a considerable amount of time and effort getting to know us and helping us. The consensus of all four families was to sign an agreement with Hawksbury as our service provider. We asked Hawksbury CLT to draw up an agreement with the relationship, roles and responsibilities of each party, and each family signed a separate agreement with the provider.

In Christchurch, there are 12 organisations which are able to provide Flexible Disability Support and can be found on the Enabling Good Lives website:

http://www.enablinggoodlives.co.nz/current-demonstrations/enabling-good-lives-christchurch/christchurch-resources/purchasing-options-for-enabling-good-lives-participants/

These providers are able to assist Enabling Good Lives participants to manage their personal budgets and support them to purchase the supports, services and things that will assist them to lead a good life.

The personal budgets are allocated to Hawksbury CLT so the money does not go through their personal bank accounts. Hawksbury CLT invoices the Ministry of Health every month for the costs of the staff they provide to the house. The funding is valid for a year and each year before the funding review date of April 1 each family is contacted by the NASC to see if there have been any changes in need before reallocating their EGLPB for another year.

After our 2016 Christmas break, we had 3 more jobs to do: create a transition plan, furnish the house and talk to WINZ.

The transition plan was the most important. The other three young men were going to Ara Institute of Canterbury, which offers a course specifically for students with intellectual or learning disabilities from Monday through Thursday each week.

For James, I put together a programme which involved activities in the community, housework, socialising and his volunteer work at Wicketts Dog Groomers.

Roger and I purchased many of the big household items like lounge suites on Trademe. We also hit all the Briscoes sales so it did not take long to purchase all the kitchenware we needed. James’s flatmates took care of the furniture and bedding for their own rooms.

In February 2017, we asked Enabling Good Lives if they could arrange one WINZ case manager for all four families. We met with her as a group and individually to explain the situation.

The case manager was given the signed copy of the tenancy agreement which I had created using the website www.tenancy.govt.nz which was crucial for obtaining the Accommodation Supplement.

Each family had to apply for the Accommodation Supplement which is paid directly to the landlord by WINZ and does not go through the young men’s individual bank accounts.
Lastly, towards the end of March we set up a weekly payment from our son’s bank account to go to Hawksbury CLT to cover the food, petrol, phone and power. The weekly Supported Living Payment from WINZ covered these costs.

One month from the move, three of the young men were 21 and one was 22 and all knew each other well from high school. Our son James did not understand what was happening but the other three were looking forward to the move.

The months that James had at home with us in February and March were an indicator of how isolating it was going to be for James if he stayed at home. I had to work hard arranging for him to see friends or have a life even remotely like ours. It was good for us to have James’s move into his new home to look forward to.

We put together a house manual with instructions to staff and I put together a file of James’s favourite recipes and instructions about gluten free food.

We also drew up a register of all the chattels that had gone into the house. Lastly Roger and I used a Communication Passport to tell staff everything they needed to know about James; communication, health, his weekly programme, things he could do, things he could not do, safety concerns and so on.

The four flatmates

The big day arrived on April 3rd, 2017 and James formally moved in on the Monday morning. He had been at the house for some of the weekend and week before as Roger slept over with James in his new bedroom.

The staff person who had supported James at home in the interim months was the first staff person to work in the house. He was there to greet James and his flatmates as everyone moved in over the next couple of days.

Gradually James met the other male staff when they were rostered on to do either the 7am to 3pm shift or the 3pm to 11pm shift. Those who did the last shift also slept over.

There are 3 permanent staff and up to 3 “Permanent Relief Team” staff who can work in our house as well as other Hawksbury CLT houses.

We handed over our old Honda Odyssey for the staff to transport five big men around the city.

As the months passed the young men settled into a routine. They are very happy in their new home but regularly go to their family home at weekends for the day or whole weekend.

Quickly they decided it was more fun staying in their own home, than going back to the family home, so most of them only go home for one day each weekend.

The young men do things together but during the week they tend to head in different directions particularly once they finished at Ara Institute of Canterbury.

Initially the parents, young men and staff had monthly family meetings but this has now settled down to once a quarter. In the meetings we air any concerns, talk about finances and have a say about what our sons could be doing and set dates for events. The staff have had to get used to having two bosses; parents and management of Hawksbury CLT.

We organised a house warming party for neighbours, friends, classmates and extended family to come and have a look, followed by a Christmas Party for the families, young men and staff.

Our young men are all friends and want to flat together hence there are no behavioural issues between them. The flatmates have “lifted their game” and all understand that they have to cook with support once a week and have chores to do.

Hawksbury CLT every month sends each parent a “Flexible Disability Support Monthly Purchase Unit Summary” which shows the opening balance of the number of units in their EGLPB (each unit is worth $10), the number of units spent on staff costs and the closing balance at the end of the month.

Each month the parents can see on the “Personal Finance” report what their son’s quarter share of the grocery bill and power bill has been and whether it needs a top up. Finally we get the “House Account” which summarises the total the grocery bill, petrol bill, power and phone bill for the month as a check on how the staff spend the money of the flatmates on day to day expenses. Parents still need to top up for clothes and incidentals as none of the young men at present have regular part time work.

We now also get a feedback report from staff on what the young men are doing, which is reassuring for parents. We have not had any major issues, but small things have arisen, like how we will be able to fund a replacement for the old car. It is possible we may lose some staff, but until now there has been no staff turnover. Good communication and good documentation is the key and where this is missing parents and staff are working through issues that arise.

It is now two years since the young men moved in and they are planning a BBQ with friends from school and later this year the young men want to go to Queenstown for a few days.
The most important thing is that the young men are well supported, making their own choices, are contributing members of the community through the volunteer work they do and are happy.

Roger and I have fulfilled our vision of our son living independently of us in a housing model that is sustainable and does not rely on us always being there.
By purchasing a house in a location of our choice with flatmates of our son’s choice supported by a Flexible Disability Support Provider we have been able to fulfil the Enabling Good Lives Vision.

It might be worth checking those out. http://www.enablinggoodlives.co.nz/about-egl/egl-approach/vision/

Mini golf in Hanmer

 

 

 

By George T. Capone M.D., at the Kennedy Krieger Institute in Baltimore

During the past 10 years, I’ve evaluated hundreds of children with Down syndrome, each one with their own strengths and weaknesses, and certainly their own personality.

Sometimes parents bring their child with Down syndrome to the clinic—not always for the first time—and they are deeply distraught about a change in their child’s behaviour or development. Some families do their own research and mention they think their child may have autistic spectrum disorder (ASD) along with Down syndrome. Others have no idea what may be happening. They do know it isn’t good and they want answers now. This article is for families in situations like this and other, similar ones.

If your child has been dually-diagnosed with Down syndrome and autistic spectrum disorder (DS-ASD) or if you believe your child may have ASD, you will learn a little more about what that means, what we are learning through data collection, and insights to the evaluation process.

There is little written in the form of research or commentary about DS-ASD. In fact, until recently, it was commonly believed that the two conditions could not exist together. Parents were told their child had Down syndrome with a severe to profound cognitive impairment without further investigation or intervention into a diagnostic cause. Today, the medical profession recognises that people with Down syndrome may also have a psychiatric-related diagnosis such as ASD or Obsessive Compulsive Disorder (OCD).

Because this philosophy is relatively new to medical and educational professionals, there is little known about children and adults with DS-ASD medically or educationally.

Over the past six years we have gathered data and studied DS-ASD at Kennedy Krieger Institute in Baltimore. We have collected and analysed data from clinical medical evaluations, psychological and behavioural testing, and MRI scans of the brain. We now follow a cohort of approximately 30 children with DS-ASD through the Down syndrome Clinic, possibly the largest group of children with DS-ASD that has been gathered.

What Should I Look For?
SIGNS AND SYMPTOMS

As parents, it is common, if not expected, for you to worry at times about your child’s development.

This can be especially troublesome if your child suddenly picks up a new habit you associate with ASD such as incessantly shaking toys. The children we have seen at Kennedy Krieger Institute who have DS-ASD present symptoms in several different ways, which we have separated into two general groups:

GROUP ONE

Children in this first group appear to display “atypical” behaviours early. During infancy or toddler years you may see:

  • Repetitive motor behaviours (fingers in mouth, hand flapping),
  • Fascination with and staring at lights, ceiling fans, or fingers,
  • Extreme food refusal,
  • Receptive language problems (poor understanding and use of gestures) possibly giving the appearance that the child does not hear, and
  • Spoken language may be highly repetitive or absent.
  • Along with these behaviours, other medical conditions may also be present including seizures, dysfunctional swallow, nystagmus (a constant movement of the eyes), or severe hypotonia (low muscle tone) with a delay in motor skills.

If your child with Down syndrome is young, you may see only one or a few of the behaviours listed above. This does not mean your child will necessarily progress to have autistic spectrum disorder. It does mean that they should be monitored closely and may benefit from receiving different intervention services (such as sensory integration) and teaching strategies (such as visual communication strategies or discrete trial teaching) to promote learning.

GROUP TWO

A second group of children are usually older. This group of children experiences a dramatic loss (or plateauing) in their acquisition and use of language and social-attending skills. This developmental regression may be followed by excessive irritability, anxiety, and the onset of repetitive behaviours.

This situation is most often reported by parents to occur following an otherwise “typical” course of early development for a child with Down syndrome. According to parents, this regression most often occurs between ages three to seven years.

The medical concerns and strategies for these two groups may be different. There is not enough information available to know at this time. However, regardless of how or when ASD is first discovered, children with DS-ASD have similar educational and behavioural needs once they are identified.

ASD 101: A Crash Course
SIGNS AND SYMPTOMS VARY

Although we are documenting some similarities in the way DS-ASD presents, autism is what is considered a spectrum disorder. This means every child with DS-ASD will be different in one way or another. Some will have speech, some will not. Some will rely heavily on routine and order, and others will be more easy-going.
Combined with the wide range of abilities seen in Down syndrome alone, it can feel mystifying. It is easier if you have an understanding of ASD disorders separate from Down syndrome.
Autism, autistic-like condition, autistic spectrum disorder (ASD), and pervasive developmental disorder (PDD) are terms that mean the same thing, more or less. They all refer to a neuro-behavioural syndrome diagnosed by the appearance of specific symptoms and developmental delays early in life.
These symptoms result from an underlying disorder of the brain, which may have multiple causes, including Down syndrome. At this time, there is some disagreement in the medical community regarding the specific evaluations necessary to identify the syndrome or the degree to which certain “core-features” must be present to establish the diagnosis of ASD in a child with Down syndrome. Unfortunately, the lack of specific diagnostic tests creates considerable confusion for professionals, parents, and others trying to understand the child and develop an optimal medical care and effective educational program.

There is general agreement that:

  • Autism is a spectrum disorder: it may be mild or severe.
  • Many of the symptoms overlap with other conditions such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).
  • ASD is a developmental diagnosis. Expression of the syndrome varies with a child’s age and developmental level.
  • Autism can co-exist with conditions such as intellectual disability, seizure disorder, or Down syndrome.
  • Autism is a life-long condition.

The most commonly described areas of concern for children with ASD include:

  • Communication (using and understanding spoken words or signs),
  • Social skills (relating to people and social circumstances),
  • Repetitive body movements or behaviour patterns.

Of course, there is inconsistency in any of these areas in all children, especially during early childhood.

Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:

  • Unusual response to sensations (especially sounds, lights, touch or pain)
  • Food refusal (preferred textures or tastes)
  • Unusual play with toys and other objects
  • Difficulty with changes in routine or familiar surroundings
  • Little or no meaningful communication
  • Disruptive behaviours (aggression, throwing tantrums, or extreme non-compliance)
  • Hyperactivity, short attention, and impulsivity
  • Self-injurious behaviour (skin picking, head hitting or banging, eye-poking, or biting)
  • Sleep disturbances
  • History of developmental regression (esp. language and social skills)

Sometimes these characteristics are seen in other childhood disorders such as attention deficit hyperactivity disorder or obsessive compulsive disorder.

Sometimes ASD is overlooked or considered inappropriate for a child with Down syndrome due to cognitive impairment. For instance, if a child has a high degree of hyperactivity and impulsivity only the diagnosis of ADHD may be considered. Children with many repetitive behaviours may only be regarded as having stereotypy movement disorder (SMD), which is common in individuals with severe cognitive impairments.

Most parents agree that severe behaviour problems are usually not easily fixed. Finding solutions for behavioural concerns is one reason families seek help from physicians and behaviour specialists. Compared to other groups of children with cognitive impairment, those with Down syndrome, as a group, are less likely to have behavioural or psychiatric disorders. When they do, it is sometimes referred to as having a “dual-diagnosis.” It is important for professionals to consider the possibility of a dual-diagnosis (Down syndrome with a psychiatric condition such as ASD or OCD) because:

  1. It may be responsive to medication or behavioural treatment, and
  2. A formal diagnosis may entitle the child to more specialised and effective educational and intervention services.

If you think your child may have ASD disorder, share this before or during your evaluation. Don’t wait to see what might happen.

Incidence

Estimating the prevalence or occurrence of ASD disorder among children and adults with Down syndrome is difficult. This is partly due to disagreement about diagnostic criteria and incomplete documentation of cases over the years.

Currently, estimates vary between 1 and 10%. I believe that 5-7% is a more accurate estimate. This is substantially higher than is seen in the general population (.04%) and less than other groups of children with intellectual disability (20%).

A review of the literature on this subject since 1979 reveals 36 reports of DS-ASD (24 children and 12 adults). Of the 31 cases that include gender, an astonishing 28 individuals were males. The male-to-female ratio is much higher than the ratio seen for autism in the general population. Additionally, in reports that include cognitive level, most children tested were in the severe range of cognitive impairment.

The impact of a pre-existing medical condition such as Down syndrome on the developing brain is probably a critical factor in the emergence of ASD disorder in a child.

Brain Development and ASD

The development of the brain and how it functions is different in some way in children with DS-ASD than their peers with Down syndrome. Characterising and recording these differences in brain development through detailed evaluation of both groups of children will provide a better understanding of the situation and possible treatments for children with DS-ASD.

A detailed analysis of the brain performed at autopsy or with magnetic resonance imaging (MRI) in children with autism shows involvement of several different regions of the brain:

  • The limbic system, which is important for regulating emotional response, mood and memory,
  • The temporal lobes, which are important for hearing and normal processing of sounds,
  • The cerebellum, which coordinates motor movements and some cognitive operations, and
  • The corpus callosum, which connects the two hemispheres of the cortex together.

At Kennedy Krieger Institute, we have conducted MRI studies of 25 children with DS-ASD. The preliminary results support the notion that the cerebellum and corpus callosum is different in appearance in these children compared to those with Down syndrome alone. We are presently evaluating other areas of the brain, including the limbic system and all major cortical subregions, to look for additional markers that will distinguish children with DS-ASD from their peers with Down syndrome alone.

Brain Chemistry and ASD

The neurochemistry (chemistry of the brain) of autism is far from clear and very likely involves several different chemical systems of the brain. This information provides the basis for medication trials to impact the way the brain works in order to elicit a change in behaviour.

An analysis of neurochemistry in children with ASD alone has consistently identified involvement of at least two systems.

  1. Dopamine: regulates movement, posture, attention, and reward behaviours; and
  2. Serotonin: regulates mood, aggression, sleep, and feeding behaviours.

Additionally, opiates, which regulate mood, reward, responses to stress, and perception of pain, may also be involved in some children.

Detailed studies of brain chemistry in children with DS-ASD have not yet been done. However, our clinical experience in using medications that modulate dopamine, serotonin or both systems has been favorable in some children with DS-ASD.

How Do I Find Out?
OBTAINING AN EVALUATION

If you suspect that your child with Down syndrome has some of the characteristics of ASD or any other condition qualifying as a dual-diagnosis, it is important for him to be seen by someone with sufficient experience evaluating children with cognitive impairment—ideally Down syndrome in particular.

Some of the same symptoms which occur in DS-ASD are also seen in stereotypy movement disorder, major depression, post-traumatic stress disorder, acute adjustment reactions, obsessive-compulsive disorder, anxiety disorder, or when children are exposed to extremely stressful and chaotic events or environments.

Sometimes when children with Down syndrome are experiencing medical problems that are hidden—such as earache, headache, toothache, sinusitis, gastritis, ulcer, pelvic pain, glaucoma, and so on—the situation results in behaviours that may appear “autistic-like” such as self-injury, irritability, or aggressive behaviours. A comprehensive medical history and physical examination is mandatory to rule out other reasons for the behaviour. When cooperation is elusive, sedation or anesthesia may be required. If so, use this “anesthesia time” effectively by scheduling as many specialty examinations as are feasible at one session.

In addition to the medical assessment, you will be asked to help complete a checklist to determine whether or not your child has ASD. I use the Autism Behaviour Checklist (ABC), but there are others that are also used such as the Childhood Autism Rating Scale (CARS) and the Gilliam Autism Rating Scale (GARS). Each of these is completed either in an interview with parents or done by parents before coming to the appointment. They are then scored and considered along with clinical observation to determine if your child has ASD.

OBSTACLES TO DIAGNOSING DS-ASD

Parents sometimes face unnecessary obstacles in seeking help for their children.

This is frustrating for everyone who is actively seeking solutions for a child. If you are in this situation and feel that your concerns are not taken seriously, keep trying. The best advice is to trust your gut feeling regarding your child. Eventually you will find someone willing to look at all the possibilities with you.

LACK OF ACCEPTANCE BY PROFESSIONALS

There is sometimes a lack of acceptance by professionals that ASD can coexist in a child with Down syndrome who has cognitive impairment. They may feel an additional label is not necessary or accurate. Parents may be told, “This is part of ‘low functioning’ Down syndrome.” We now know this is incorrect. Children with DS-ASD are clearly distinguishable from children with Down syndrome alone or those who have Down syndrome and severe cognitive impairment when standardised diagnostic assessment tools are used.

CONFUSION IN PARENTS

Lack of acceptance, understanding, awareness, or agreement on the part of parents or other family members, particularly of very young children, about what’s happening is a major problem.

Parents in this situation may find themselves at odds with each other about the significance of their child’s behaviour and what to do about it. As a result, marriages are stressed, parenting relationships with other children are strained, and life is tough altogether. Unfortunately, I have found that parents in this situation almost universally withdraw from local Down syndrome support groups because “I feel like people think I’m a bad parent because of my daughter’s behaviour.”

Ideally someone in the parent group would recognize this when it is happening and offer additional support instead of watching them withdraw.

What Does It Mean?
BEHAVIOURAL FINDINGS

Obtaining a diagnosis of DS-ASD is rarely helpful in understanding how ASD effects your child. It is complicated by the lack of information available, making it difficult to discern appropriate medical and educational options. To determine what behaviours are most common in DS-ASD we are conducting case-control studies which randomly match (for gender and age) a child with DS-ASD with a child who has Down syndrome without ASD. Through this process we have been able to determine the following:
Children with DS-ASD were more likely to have:

  • History of developmental regression including loss of language and social skills,
  • Poor communication skills (many children had no meaningful speech or signing),
  • Self-injurious and disruptive behaviours (such as skin picking, biting, and head hitting or banging),
  • Repetitive motor behaviours (such as grinding teeth, hand flapping, and rocking),
  • Unusual vocalizations (such as grunting, humming, and throaty noises),
  • Unusual sensory responsiveness (such as spinning, staring at lights, or sensitivity to certain sounds),
  • Feeding problems, (such as food refusal or strong preference for specific textures), and
  • Increased anxiety, irritability, difficulty with transitions, hyperactivity, attention problems, and significant sleep disturbances.

Other observations include:

  • Children with DS-ASD scored significantly higher than their peers with Down syndrome alone on sensory function, social relating, body and object use, language use, and social skills.
  • Children with DS-ASD show less impairment in social relatedness than those with ASD only.
  • Children with DS-ASD show more preoccupation with body movement and object use than children with ASD alone.
  • Children with DS-ASD scored higher on all five subscales of the ABC than children with severe cognitive impairment alone.
  • Among children with Down syndrome only, even those with severe cognitive impairment do not always meet the criteria for ASD.

The conclusion I draw from this data is children DS-ASD are clearly distinguishable from both “typical” children with Down syndrome and those with severe cognitive impairment (including children with Down syndrome). Thus, it is probably incorrect to suggest autistic-like behaviours are entirely due to lower cognitive function. However, the fact that autistic features and lower cognition are associated indicates there is some shared determinant(s) that are common to both features (ASD and lower cognition) of the condition.

What Now?
AFTER THE EVALUATION

If your child has DS-ASD, obtaining the diagnosis or label may be a relief of sorts. The addition of ASD brings new questions. From a medical perspective it is important to consider use of medication, particularly in older children, for specific behaviours. This is especially true if these behaviours interfere with learning or socialisation. While there is no cure or remarkably effective treatment for Down syndrome and autistic spectrum, certain “target behaviours” may be responsive to medication. Some of these behaviours include:

  • Hyperactivity and poor attention,
  • Irritability and anxiety,
  • Sleep disturbance,
  • Explosive behaviours resulting in aggression/disruption (can sometimes be reduced),
  • Rituals and repetitive behaviours (can sometimes be reduced), and
  • Self-injury (can sometimes be reduced).

As you continue to take care of your child, make a point to take care of yourself and your family—in that order. You have a life and a family to consider. Learn to recognize your own difficulties and be honest with yourself and your spouse about the need for help. Counseling and medication may go a long way in helping you to be at your best, for everyone’s sake.

Credit: National Down Syndrome Society (US)

Buzz Lightyear

 

Numerous services around New Zealand provide opportunities for people with Down syndrome and other disabilities to get employment. Here is a list of providers Chat 21 was  able to locate.


Abilities Incorporated (Auckland) 

Abilities Incorporated employs people with disabilities. 

www.abilities.co.nz 


Able Pet Care 

Able Pet Care is a registered charity and social enterprise that provides quality pet care services in our communities. Our pet care team are people with a disability that are trained, capable, trustworthy people, keen to help you and your pet. We provide services in Wellington, Auckland, Rotorua, Blenheim and Nelson. 

0508 ENABLE (362253)


Brackenridge (Canterbury) 

At Brackenridge, people are our priority, supporting people with learning disabilities and autism to create and lead their lives, their way.  Fantastic normal everyday lives where people are included as valued members in our community and live happy and fulfilling lives. 

www.brackenridge.org.nz 


Career Moves (Waikato) 

Career Moves is a dedicated, stand-alone, Supported Employment service. It is pan-disability and also supports people with long-term injuries, such as brain and spinal injuries. 

www.careermoves.org.nz 


Catapult Employment Services Trust (Canterbury) 

Catapult Employment Services is an employment service for both employers and jobseekers, that has been helping Cantabrians into employment for over 10 years. We have employment consultants and offer a counselling around anxieties with employment.

www.catapult.org.nz 


CCT (Otago) 

We support people with intellectual disabilities and/or Autism Spectrum Disorder to live in their community.

www.cct.org.nz 


Community Living Trust (Waikato) 

Community Living supports 100 people to obtain real meaningful work or to gain the skills to enable them to get a job. 

www.communityliving.org.nz 


Creativeworks Employment Service (Christchurch) 

Creativeworks provides support to people with experience of a mental illness or disability to find employment and then supports them to maintain this for at least six months. 

[email protected] 


Disability Resource Centre Hawkes Bay Trust 

We work to promote opportunities and facilities for the independence, mobility, and recreation of people with disabilities as well as providing occupational, social and personal opportunities and facilities. 

www.drchb.org.nz 


Emerge Supported Employment Trust (Wellington) 

Emerge Supported Employment Trust is a not-for-profit organisation which provides a range of professional supported employment and transition services for people with disabilities in Wellington. 

www.emergetrust.org.nz 


Enrich+ (Te Awamutu) 

Enrich+ supports individuals to have a ‘life like any other’. Through education, employment and empowerment, we help each person to be a real part of the communities of their choice. 

www.enrichplus.org.nz 


Framework 

Framework delivers community based mental health and intellectual disability services in greater Auckland from strategic locations throughout the city. Paramount among these services is community support, supported employment, participation and inclusion. 

www.framework.org.nz 


Geneva Elevator 

Geneva Elevator is a specialist consultancy service offering a wide range of employment, training and support options to clients with diverse needs in Whangarei, Northshore, South Auckland, Wellington and New Plymouth. 

www.genevaelevator.co.nz 


HLC Employment Services (Levin) 

www.hlc.ac.nz 


IDEA Services Ltd 

IDEA Services provides residential, vocational, behaviour support, supported employment, supported living and other support to people with intellectual disabilities throughout New Zealand. 

www.ihc.org.nz 


ImagineBetter 

ImagineBetter has a National reach around Aotearoa and is active on a number of fronts including but not limited to providing a range of supports, workshops, training and resources directly to families of disabled people. 

www.imaginebetter.co.nz 


Inclusion Aotearoa (Palmerston North) 

Inclusion Aotearoa supports families searching for ways to support their children/siblings to have a good life. 

www.inclusionaotearoa.com


LR Training & Development 

LR Training & Development provides career advice and guidance for people who face barriers to employment including health issues, injury and disability. 

www.lrtraining.co.nz 


Manaaki Ability Trust (Hutt Valley) 

Manaaki Ability Trust provides services that include transition from school, vocational support, community participation and centre-based and facilitated programmes. 

www.manaakiabilitytrust.org.nz 


Manawatu Supported Living Trust (Options) 

Options is a supported living agency, based in Plamerston North, which is committed to delivering services and supports in a manner that fit each person’s needs and aspirations. 

www.options.org.nz 


Marian Galvin 

Student Transition Services Auckland Region 

[email protected] 


Matea Trust (Auckland) 

On a rural block in Dairy Flat, just north of Albany, we provide employment opportunities for men with intellectual disabilities in our firewood business. We also offer work experience opportunities to students preparing to leave school and enter the workforce.  

www.mateatrust.co.nz 

 

Poly-Emp Employment and Advisory Service (Auckland) 

Poly-Emp Employment & Advisory Service is a Charitable Trust that assists people with learning disabilities to find paid employment and reach their full potential in their chosen career. 

http://poly-emp.org.nz/ 


Southland disAbility Enterprises 

The overriding objective of Southland disAbility Enterprises Ltd is ‘to increase the participation of people with disabilities in employment and in their community’. 

http://sde.org.nz/ 


Supported Employment Agency Trust (Rotorua) 

www.supportedemploymentagency.org.nz 


Village Community Trust (Workstar Nelson) 

WORKSTAR is a specialist Supported Employment Agency that has served the Nelson economy well for over twenty-five years servicing over 1500 people. Our professional employment service provides free ongoing support. 

www.workstar.co.nz 


Whanganui Disability Resources Centre (Whangarei) 

The Whanganui Disability Resources Centre offers a disability information service, advocacy, supported employment service, short-term hire of wheelchairs and other large items of equipment, and sales of aids and equipment. 

www.whanganuidrc.org.nz 


Workbridge 

Workbridge is the largest New Zealand owned employment agency for people with a disability, injury or illness. Over the past decade, Workbridge staff have arranged over 30,000 jobs for disabled people. Each year around 1,800 employers provide these jobs across a range of industries.  

www.workbridge.co.nz 


Work Opportunities (Otago) 

We are a Supported Employment Service Provider in Dunedin. 

www.workopportunities.org.nz 


Workmates Supported Employment 

Workmates Supported Employment is a charitable trust that provides a completely FREE supported and employment service in the Porirua and greater Wellington region. 

www.workmates.co.nz 

Transition into the workplace and holding down long-term employment remains a challenge for many adults with Down Syndrome. COEN LAMMERS examines the employment sector, the access for people with learning disabilities and the success stories that might inspire others in the community.

New Zealand has a long and proud history of mainstreaming students with disabilities, but many families feel they are dropping off a massive cliff at the end of high school. The pathway between pre-school, primary school and secondary school is clearly sign-posted and well-supported, but where to from there? Finding your own place in the world is an intimidating challenge for every young adult, but for people with Down syndrome and their families, it often feels like the big unknown. Securing employment is a key element for a rewarding life and gives every person a source of pride and independence, but for many people with learning disabilities full-time, long-term employment appears to be a pipe dream.

“New Zealand is doing as well as any other country getting people with disabilities into employment, but we still have a long way to go as far as creating better pathways for younger people,” says Grant Cleland chief executive officer of Workbridge New Zealand. Workbridge is the country’s largest “pan-disability” employment service provider and assists around 3000 people with disabilities to secure employment each year. Over the past decade, Workbridge has linked 36,800 New Zealanders with learning difficulties, mental health issues, sensory, physical and other disabilities or health conditions with a suitable job and supports them to be successful in the workplace. Cleland says that his organisation in 2017-18 had 1,664 employers who listed 4,061 vacancies with us, of which in 1,332 provided a job for our jobseekers and 55% hired more than one person with a disability. The list includes several strong national partnerships like, Accor Hotels, ACC, IRD, Victoria University, Westpac and of course Z-Energy who in recent years alone have employed over 300 people with disabilities. “Those companies are leading way, but the list is growing each week.” He says that the attitudes around employing people with disabilities is changing rapidly and is no longer seen as charity or a community service. “Employers are more willing to try new things, are getting more disability-confident and the conversation around disabilities has become much more genuine,” says Clelland. He says that the staff shortage for many companies has opened their eyes to a new talent pool that they had not considered. “There are a lot of myths around people with disabilities, but the research clearly shows that they are just as productive as any other employee.”

Grant Clelland

Grant Clelland

Cleland says that some employers are wary of looking at this group because they fear that a worker with a disability may require significant support and resourcing, but research shows that less than 10% of disabled jobseekers need some additional support or alteration to their work station. “Research shows that hiring a person with disability has a wonderful impact on the workplace and is also a good reflection of our community as 24% of New Zealanders have some kind of disability, illness or long-term injury.”

Employment is one pathway for people with disabilities, but many families in the Down syndrome community have decided to take control of the situation by creating their own micro-businesses. “Ten years ago, there were maybe five micro businesses around New Zealand, but now there are hundreds,” says Lawrence Chok who has been driving force behind many of those micro-businesses. With a background in the corporate work, Chok decided 11 years ago that he wanted to create a micro-business for his son Robin, who has Down syndrome, but realised he could not do this alone. “Many microbusinesses fall over after 5-10 years when the families simply run out of puff,” says Chok, who formed Family Action Support Team (FAST) with three other families in the Palmerston North area, with a variety of disabilities. Chok visited Canning in Canada to research a successful CAPRE (Community Association of People for Real Enterprise) model and the group started four micro-businesses that tapped into the passions and the skills of their children. He says the past 11 years have been an amazing journey for all four children and even though not all businesses are still going, the work has morphed into new opportunities. One of them still runs a business, while one of the other participants has worked his way through script writing courses and hopes to get employed with Peter Jackson. “And they are all living independently.”

Chok now runs two-day workshops across the country to help families get started and travels around the world to find new innovations to help people with disabilities. Coming from the corporate world, Chok says he was mainly focused on the businesses making a profit and being viable in the traditional sense, but soon discovered that the micro-business model had very different goals and success milestones.“I was looking at it completely the wrong way and the lot of families do, until I realised that this micro-business model needs to be about the total well-being of the individual,” says Chok. “Why do most of us do the job that we do? Because we follow our passion. So why don’t we let our children follow their passion?” He says that many families trying to get and keep their child into employment are struggling and are stressed and that some employers also find it challenging.

“For many it feels like they are banging their heads against the wall,” says Chok who is clearly frustrated that the Government spends millions on securing supported employment but does not encourages micro-businesses, for example by raising the amount a person with a disability can earn before they lose their allowances. Canadians are ahead of Aotearoa as the individual’s microbusiness can earn as much as $9,000 per annum before it affects the individual’s supported living allowance. In the model that Chok shares with families he advocates for working smarter, not harder. “Families need to learn to use the three Os: Other People’s Time, Other People’s Money and Other People’s Services.” He says there are plenty of people in the community who want to support these kind of micro-businesses, and sufficient financial support available among different agencies, once you know how to use the system and access the funding.

Lawrence Chok

Lawrence Chok

Chok says that the positive changes he has seen in the young people he has worked with have been phenomenal. “Once you get total engagement of the individual, they grow in confidence, learn new skills and they walk differently and talk differently.” Chok is the first to admit that a micro-business is not the only pathway for people with disabilities to lead a full life, and says it may not suit every family.

The Te Mahi Trust is one example of families getting together to create a micro-business when Rachel Hill and Alison Faithful in Northland were grappling with their children leaving school. The Trust has a vision to run a catering business or café for young adults with a disability, and have started by purchasing a coffee cart, in which two young adults sell coffees, cold drinks and food, supported by one carer, at community events and at a road side fatigue shop.“ We are hoping the people of Whangarei are ready for it,” says Alison Faithful, who hopes the cart will secure a permanent spot in town soon.

Lawrence Chok and Workbridge’s Grant Clelland are both encouraged by the growing number of success stories in the disability sector, but the latter says the education system needs to do better to prepare people with disabilities for a working life. “Schools do a lot of planning for transition out of school, but it does not often lead to employment. Instead the school transition often leads to a day service option, because their biggest block is access to employers.”

To show schools what is possible, Workbridge last year piloted, Z in schools, where students in Special Units from Papanui and Riccarton High Schools in Christchurch could apply for four internships with Z Energy. This included students with learning disability. The students who might normally have struggled to find employment completed a 12-week internship which led to a Service IQ Level 2 Retail Certificate and for one of the student resulted in a full-time job. The trial has been so successful that it is now extended to Auckland and Dunedin.

Cleland says that some schools are better than others in preparing their students for the workplace. The aim of our work in schools is to create a pathway into employment for disabled school students, with employers who are already employing the jobseekers Workbridge work with. “We think more students need to get the right learning support to prepare them for employment. With Z in School the schools were able to able to teach the Service IQ Level 2 Unit Standards to reinforce the learning in the workplace,” says Cleland who himself grew up with a disability but had parents with high expectations and willing to challenge the status quo.

One company that is proactively trying to fill that gap is Kilmarnock Enterprises, a Christchurch business that employs differently abled people and aims to change attitudes around people with disabilities. The company was founded 60 years ago as a protected workshop but has evolved into a complex, thriving business that focuses on enhancing the skills of their workforce. As a registered charity, all profits are pumped back into Kilmarnock Basecamp, where the company provides education, health, and skills training for its employees. “Our staff learn more skills, which means we get more adept staff who enable us to be more successful. It’s a win-win situation,” says Tim Jones, General Manager Growing Good at Kilmarnock. “We don’t look at the things they can’t do, but find what they are good at, what work they enjoy and then try to build on those personal skills,” says Jones.

Last year, the Kilmarnock Academy was established to help graduates find meaningful, sustainable open employment outside of Kilmarnock. “Previously, our employees came to us, and more often than not, stayed in our employment till retirement,” says Jones. “But we now wish to only be part of their journey, and not the destination. With the right training, support, and encouragement, we can all achieve incredible things.”

Kilmarnock used to compete for work because their workforce was paid below the minimum wage, but Jones explains that companies are now using their services simply because his team can do certain jobs better than anyone else.“Some of our staff still earn below the minimum wage, which is often at their request so they don’t lose their allowances, but our company is committed to have everyone on the minimum wage in the very near future,” says Jones. Workbridge boss Grant Clelland says that his organisation does not want to use subsidised wages as an incentive to secure a position, but strives to have all their clients in “open employment” which means the same conditions, responsibilities and pay as their colleagues. “Probably less than one per cent of our clients have some sort of subsidy for their wages to entice their employer to take them, but all the others are employed simply because the employer wants them for their skills.”

The chief executive says New Zealand still has a long way to go and lacks an employment-focused national strategy like Australia and other countries have adopted. “We still have a welfare strategy where people think about losing benefits instead of thinking about the skills and strengths people with disabilitiescan offer the work force,” says Clelland. “Until we change that policy and mindset, with families and at Government level, we will continue to create a lifelong dependency.”

By Fiona Kenworthy, Clinical Director and Specialist Paediatric Speech-Language Therapist at www.smalltalktherapy.co.nz

 

For the last ten years, I’ve specialised in working with children with Down syndrome. I’ve seen the way ‘early intervention’ yields long-lasting benefits for the child and their family. ‘Early intervention’ for children usually means the first five years.  

They are the golden years for setting kids up for how you want them to thrive. 

Here’s my five top tip gems for getting a great start: 

1. Aim high, have fun!  

Research on families with a child who has a sole diagnosis of Down syndrome has found them to have essentially the same quality of life potential as everybody else. 

Adjustments to priorities and routines must be made of course. Have high expectations, seek support from others and have as much fun as you can. Which is pretty much the same for kids everywhere. 

2. Get active early!  

It’s never too late to start speech therapy. But the more time and energy you can invest in the early years, the bigger the pay off. 

Six months of age is a great time to get going. Tap into the critical development periods, when the brain is geared for learning. Get networked in withother families of children with Down syndrome. 

Build genuine partnerships with the right team of skilled, caring professionals who support, inspire and empower you. Put time aside for home practice and courses. And speak up when you need to you know your child better than anyone, so you are their best qualified advocate. 

3. Keep the ear infections at bay!  

Eighty percent of children with Down syndrome are prone to recurrent ear infections. It may sound minor, but hearing impairment has a significant long-term impact on speech and language development, with flow on effects to all areas of life and learning. 

Some children won’t show obvious symptoms. Ask your GP to monitor them regularly. 

4. Have fun with new words every day!  

Whether you sign, say, or act something out, it all adds to your child’s vocabulary. Children with Down syndrome sometimes struggle as they don’t always perceive or recall spoken words. Children who learn to repeat words accurately are better at taking in new vocabulary. And the larger their vocabulary, the better their spoken language and long-term 

communication ability. This also helps set them up for literacy and school. 

5. Attend an SLT Hanen workshop.  

This teaches the basics of human communication – why and how children communicate. Children whose parents use Hanen produce more spoken and/or signed words. 

It’s also great for your relationship with your child. 

Attend a Makaton workshop too. Signing is a useful way to relieve early frustration, teach children the foundations of language, and provide a stepping stone to talking. Sign up for these courses while your little one is between 6-24 months to get the most out of them. 

Every parent will be faced with an avalanche of decisions about their child throughout their life. But taking these first proactive steps will put you and your child in the driving seat.
 

By Glen Jelley 

 

Jessica was our first child of 3 and we knew at the 19 week scan that she was going to have down syndrome so had a bit of time to prepare and research. 

She came into the world screaming her lungs out like any other child with people rushing around testing this and that. It was a good 15 mins before i was able to hold my beautiful baby girl. The next few days consisted of xrays, heart scans and blood tests. The results were encouraging with a small hole in the heart that they were confident would close over itself. 

We were able to take her home at around 6 days old. We were home 3 days when we received a phone call from a parent of a child with down syndrome that i used to babysit when i was in my teens. They started of with congratulations then proceeded to tell me about everything Jessica would never do, one of which was ride a 2 wheel bike. Not sure why that stuck in my head but it did. 

We were very lucky with the support services we had and got a lot of great advice. Not all of it was relevant but our thoughts were ‘listen to everything, take what works for you at the time and put the rest in the memory banks for later.’

We had her in a walker and jolly jumper from the time she could hold her head up herself. Once she could sit up by herself (around 12 months) we put her on one of those wee 3 wheel plastic doon buggy bikes in the house. Once she got the hang of not running over her feet, she was off. We also took her on lots of bike rides behind our bikes on a half wheeler I adapted to hold a car seat. I believe this helped with her balance. She loved it but would often go to sleep. 

Bike modifications

From there at around 2 and a half (she was just starting to walk) we went to a balance bike. She kept going back to the doon buggy as it was easier so big mean dad put it away in the garage. With a bit of work from Mum and Dad on the front lawn she soon mastered the balance bike and got up way too much speed for my liking as they don’t have brakes lol. 

She stayed on the balance bike till she was about 4.  We then stepped up to a 12 inch 2 wheeler pedal bike with training wheels. Looking back I think this is where we made our biggest mistake. We should have persevered and gone straight to the pedal bike with no training wheels, but as we were both working full time time was limited and this was the easy way to get her on the pedal bike. She stayed with the training wheels for about 2 years. We did lift them up and tried briefly a couple of times to take them off without success. 

Family bike ride

When she was around 6 or 7 we were at Miller’s flat camping at Christmas time for two weeks so we decided to make a concentrated effort to get those training wheels off. I took the training wheels off and we went over to the local school rugby field. Now I’m not going to say it all went smoothly and she was off and riding in a day, far from it. There were crashes, tantrums and plain old sitting on the ground and refusing to get on it. But with a bit of good old bribery and determination on her part we got her riding by the end of the holidays. Just by running along behind her holding her then the good old ‘yes Jessica i’m holding you’ (but not really) until she was off on her own. 

Jessica riding the trails

Now at the age of 10 we are all out riding the trails. She is now on a 18 inch bike with gears. We ride around 8 to 10 km’s at a time. That is more limited by her younger brother. Our big aim this year is to bike 13km’s from the camping ground to pinders pond, spend the day swimming and ride back home again. 

This year she is doing the bike section of the quadrathon at her school. Last year she did the 2km road run with her TA. 

What we have learnt and the moral of the story is given the same opportunities and a little extra pushing/encouragement (with some thinking outside the box) as a typical child they might just surprise you by what they can achieve (subject to what the doctors may have told you). 

The Champion Centre in Christchurch has kindly agreed to provide a regular contribution to CHAT 21 to assist parents of young people with Down Syndrome. In this edition, Dr. Susan Foster-Cohen, Champion Centre Director reviews the guide Are You Worried About Your Child?

Are you worried about your child? A guide to support families of children with complex needs and the professional who care for them (This free guide can be downloaded from: http://www.tacinterconnections.com/images/Guide2-to-Support-Families-of-Children-with-Complex-Needs.pdf)

A group of professionals from the UK, South Africa, Australia, Italy, Canada, and New Zealand, including The Champion Centre’s founder, Dr. Patricia Champion, has compiled this 20-page guide aimed at supporting parents raising children with disabilities to feel less tired and stressed and to enjoy life with their child. Written in an accessible style, it consists of five main sections, each one addressed to both parents and professionals and illustrated with comments from parents about their experiences. The introductory section ends with the following challenge that speaks to the hopes and fears of many parents:

Wouldn’t it be nice…

…if your child received the same welcome to the world as every child?

…if you were seen as the expert on your child by everyone?

…if you felt you were listened to and knew people who share you concerns about your child?

…if you felt cared for and supported by an understanding community?(p.1)

A child having fun at The Champion Centre

The first of the main sections “Let’s start at the beginning”, explains the guide is “to help you and your family manage everything without getting too stressed and exhausted” as well as “help you create enjoyable moments together with your child every day.”

In other words, it aims to help parents achieve a better quality of life for themselves, their children and their family.

Its call to professionals in this first section is to put their focus on supporting the family to promote the best possible relationship with their child and the wellbeing that it brings.

Working on hand-eye coordination

The second section, entitled ‘Respect”, puts the focus on how families cope with the news that their child has an illness or disability and encourages them to celebrate their arrival as they would any other child.

It reminds parents that all children need love, warm responsive predictable care from their parents, safety and fun, even while it acknowledges the sadness many parents feel.

Mum and daughter working together at The Champion Centre

It encourages parents to find those friends, other parents, and sympathetic professionals who can support them.

It then encourages professionals to recognise the multiple sources of stress in parents, to always to ask them about their priorities and to work in partnership to plan a respectful way forward.

Children enjoy the challenge of the playground

“A quality of life”, the third section, addresses causes of stress in lives made overly busy by multiple appointments, assessments, and interventions.

It asks parents to identify, through a series of questions, where those stresses lie and what might help.

The questions include “If you have been keeping it all to yourself, can you find someone to talk it over with?” “Does your child sleep badly?” “Are you struggling financially?”

The advice to professionals in this section suggests that not all parents will admit to the levels of stress they are under and may need them to open the conversation and listen carefully to what parents are saying.

It also urges them to put the infant’s quality of life at the centre of their thinking and to help parents get a break from caring if that is what they need.

Early intervention at The Champion Centre

The fourth section, “Keeping it all together”, is about making sure that early intervention is coordinated, integrated and working towards common aims.

It acknowledges that in many cases, parents are left to pull everything together from an often overwhelming number of different appointments and professionals.

It proposes a key worker model or a multi-disciplinary ‘Team Around the Child’ approach that includes parents as team members and can help avoid them having to answer the same questions over and over again, and of getting different and conflicting information in response to their questions.

Early intervention at The Champion Centre

Finally, “Getting the Family Back on Track” is about looking towards the future when parents become more confident in parenting their child and feel in charge of their lives.

It includes the sage advice that “one of the best ways of caring for your child is to look after yourself.”

At the same time professionals are reminded that “Families need to find time and energy to enjoy being together, to develop strength and resilience. Families need to move at their own pace without pressure to conform to other people’s timetables”.

But they are also reminded that “while it is a professional instinct to be positive and upbeat about the child, this can sometimes discourage parents from voicing their anxiety and other negative emotions.”

Throughout, the guide is gentle in tone; asking questions to help parents and professionals solve issues for themselves, rather than telling them what to do.

Together with the honest reflections of parents that appear as margin quotes, this guide will help families to understand and express what they experience, encourage good communication between parents and professionals, and introduce both to practical ideas that can help improve quality of life for child and family.

Children enjoy music at The Champion Centre

Reviewed by Dr. Susan Foster-Cohen, Champion Centre Director.

 

 

From sign to word: One size does not fit all.

INTRO:
Early intervention experts Susan Foster-Cohen from the Champion Centre in Christchurch and Anne van Bysterveldt from the University of Canterbury have found some interesting patterns when researching the use of sign language alongside developing speech.

In New Zealand, most children with Down syndrome are explicitly encouraged to use manual signs (either home signs or NZSL signs) as a means to help children communicate and encourage their spoken word development.

The value of this approach is now well established thanks to the work of researchers such as Sue Buckley, Carl Dunst, and others.

However, we still don’t know much about how individual children use their signs and words as they move through early childhood and what parents and teachers need to know in order to encourage the transition to spoken words.

In our research, we have been examining the make-up of children’s vocabularies and how they change over time, because children appear to vary greatly in the degree to which they use signs, both initially and over time.

Some children start out using (almost) exclusively sign and then gradually transition to only using spoken words. Other children stay with sign as their primary means of communication or they operate with a bilingual system where they use both sign and word for the same thing.

We asked parents of children with Down syndrome attending the Champion Centre to complete the New Zealand Communicative Development Inventory (CDI) every six months from the age of two-and-a-half or three to when they went to school.

The CDI has a list of 675 items that are typical of pre-school children’s vocabulary (including words for food, animals, places, people, colours, etc.) and we gave parents the option of indicating whether their child had a sign, a word, both, or neither for each item.

All the children were growing up in spoken language families (i.e. none were using a full sign language).

We were not worried whether the sign was a recognisable NZSL sign or a hand gesture the family had come to recognise as a sign; and we were not worried about whether anyone outside the family could understand either the sign or the child’s version of a word.

We simply took the parents’ perspective on their child’s communication, which they knew so much better than we could ever know as researchers.

We are immensely grateful to the parents for completing this rather tedious task so often as part of our study.

When we looked at the changes over time for each child in the study, we found a number of different patterns which we can illustrate with the graphs below. In these graphs, the green bars show the number of words for which a child used only sign, the blue shows the number for which they used both sign and word, and the red shows the number for which they had only words.

Graph 1

In the first graph you can see data from a child who started early in her transition from sign to word, progressing steadily over the time period from 36 to 66 months, and went on to school using mostly words and just a few signs, most of which had a word equivalent as well.

As a strongly oral language user, this child is likely to be able to use her spoken language in the classroom and to be understood by her classmates and teachers.

She does not, however, have a very large vocabulary overall, as measured by the CDI, having only 234 of the 675 possible items that can be ticked, so we would hope to see her teachers encourage her vocabulary to grow now she has the transition to spoken words sorted.

Graph 2

In the second graph we see a child who has a larger vocabulary at school entry (384 items) and a greater proportion are signs.

It does appear, however, that this child ‘got the hang of’ spoken words somewhat later, fairly shortly before transitioning to school and will be using both sign and word with their teachers and classmates.

Here we would hope that the school welcomes the use of signs and supports what looks like the beginning of a strong transition to spoken words.

Like other researchers before us, we found a range of patterns such as these. In addition to the two patterns shown here, we also found some children who never, or almost never, used sign but who still succeeded in building a spoken vocabulary and children who used only sign and did not succeed in developing spoken words before they went to school. This last pattern only occurred where the overall vocabulary was very small.

However, unlike other researchers, we did not find a minimum of signs was needed before spoken words emerged. Indeed, some children in our study were able to use spoken words as part of even a very small vocabulary.

The important points to take from our work, which we have presented at national and international conferences and are currently writing up for publication, are:

(a) that each child with Down syndrome is an individual and will use signs and words to engage in the key relationships in their lives;
(b) that parents and others should offer and encourage both signs and words when engaging with children, so that the child can take and use what makes the most sense to them; and
(c) that teachers and speech-language therapists should know about the early developmental path of sign to word of each child so that they can support the continued growth of the child’s communication in school and beyond.

We have known for some time now that language development continues throughout childhood, adolescence and into adulthood for people with Down syndrome and that continuing to support that development is vital.

That lifelong trajectory starts with the early years we study at the Champion Centre.

Dr. Susan Foster-Cohen is Director of the Champion Centre and Adjunct Associate Professor of Linguistics at the University of Canterbury.

Dr. Anne van Bysterveldt is a Speech Language Therapist and Senior Lecturer in Early Intervention at the University of Canterbury.  

Child at The Champion Centre

 

NEW BEGINNINGS

My son Logan is a 21 year old man with Down Syndrome, Autism, Dyspraxia and mild intellectual disability.

Recently on our Facebook page I posted a video of Logan in action at the Living Options café in Alexandra, Central Otago.

I would like to share our incredible journey over the last three years with you all, the highs and lows in the hope it will give others the insight, that great things can and will happen for our children and families.

February 2016 saw a rare weekend away for me without Logan and while on a ride along the Central Otago Rail Trail, I came alongside a young 18 year old woman with Down Syndrome and her support worker out for a Saturday afternoon ride. I still distinctly recall the soft toy elephant in the basket on the back of her bike, As Logan was around the same age, like all of us parents, I was keen to spend a few minutes riding and talking with them to see how other families, individuals and their parents handle life’s challenges in what for most of us is a murky, unchartered journey.

We spoke only for 5-6 minutes, but that 5-6 minutes was to majorly change our lives!

I was explaining life with Logan and my worries and fears for the future with the support worker who asked me “have you heard of Living Options here in Alexandra?”

Living Options is an organisation which came about by the vision of one woman who saw a need for families of special needs people and owing to her compassionate nature, formed the foundations of this organisation from her garage.

Living Options

Living Options in Alexandra

Living Options Charitable Trust was set up in Alexandra in 2011 to provide support services in Central Otago for people with intellectual, physical and sensory disabilities enabling them to live independently in their own community. Prior to that such people often had to leave their family and community in order to receive the services they required. In recent years Living Options has extended its services into the Queenstown/Wakatipu area. Individuals are encouraged to take control over their own lives and to have input into any major decisions affecting them. Support is flexible, focusing on the person with the family and whanau involvement.

Living Options has an activity centre in Alexandra providing recreational and educational opportunities and training in life and social skills.

Upon returning from my weekend away I embarked on researching and discovering what I could about this place. Once I established contact we travelled up for a couple of visits with Logan, who clearly was totally at ease and loved being there. Finally he was in a place where he wasn’t judged, could comfortably be himself and was accepted by all for the person he is.

Logan painting

Logan Painting

Logan working on his painting ‘New Beginnings’

 

I was desperate for Logan to have an amazing life in a warm, safe, loving environment and Living Options clearly met my vision for Logan. This is a service provider which clearly puts the emphasis, not only on the individual but also firmly on the family and the care management and staff provide is exceptional.

As we were Invercargill based, and clearly there was nothing of this calibre there and a future that was uncertain, January 2017 saw us purchase a home in Roxburgh (30 minutes south of Alexandra) which we rented while familiarisation with the area and upcoming changes were implemented for Logan.

Twelve months later I took the biggest gamble of my life, sold up everything and moved up fulltime so Logan could attend the centre during the day and work towards a permanent residential contract ultimately seeing him living as independently as possible while having full support when needed. This was a journey that was going to test us all and would either be a success or a failure, and I was extremely hesitant to leave what I already knew, however to keep everyone happy, and to give Logan the best opportunity possible, I made this move.

This was a tough period with days starting at 5.30am, commuting 42.4km into Alexandra (at times in foggy, icy, white out conditions during winter), dropping Logan off, facing a full day at work before collecting him at the end of the day and returning home. Then began the usual regime with Logan sorting him for the evening before settling for the night so I could finally sit down, usually 10pm for a breather and bed before the following day saw the same routines present themselves.

I was also struggling with issues from my own childhood in this area and working in the town and seeing landmarks everyday was impacting more on me than I thought they would. It was difficult to come in daily to a place that harboured many unpleasant memories for me.

This daily grind took a major toll on me with constant tears and breakdowns, but each time management at the centre would promptly sit me down, make phone calls, and juggle rosters just so Logan could have 3-4 nights in a house so I could have a breather. These periods were instrumental in me keeping my sanity.

The many years of living a life with a disability and daily issues ultimately took its toll on my relationship and in November 2018 my partner of 17 years and I parted ways.

This had been coming for quite some time and the only silver lining was Logan’s direction in life and the vision I had for him over the last decade particularly was coming into fruition.

Logan is now thriving in his new environment and as of March this year is now under a fulltime residential contract. He lives in a flat with two other flatmates/friends and is involved in all aspects of running a household, including chores and meal preparations with full support when needed. The interaction with his peers is amazing and his progress in a very short time astounds me.

Baking

Food prep

Food prep in the kitchen

With the help of CCS in Alexandra, and in conjunction with Living Options Logan has a supported job working with and exercising puppies in a local boarding kennels and soon will also be working watering plants in the garden section of a local retailer giving him the same things we all need in our lives, a sense of self – worth, belonging and a team member whose contributions are valued.

Thursday afternoons from 1.30 – 3.30pm Living Options run a community café open to the public with everyone involved in various roles, whether it be taking orders, plating up, being a waiter or waitress, clearing tables. It’s not uncommon for up to 70 people to come and support this incredible venture. All the food is cooked, made or baked the day prior, once again with all members of the centre being involved.

Cafe waiter

Logan enjoying being a Waiter at the Café.

Thanks to this amazing place, management and staff second to none, I now have the support I need to finally, after 21 years, get some of my life back which I will admit is exciting, but is also taking a bit of getting used to!

Sitting here writing this and reflecting I guess the point I wish to share with you all is this……

I’ve had two relationship breakups, faced alcohol issues, depression and mental health issues, I’ve had to confront the past and had an unstable work history in the quest for finding a good work/life balance. I’ve battled agencies, been knocked back numerous times, shed tears and tantrums as well as experiencing laughs, smiles, milestones and magical moments on this 21year journey. Whatever your vision, goals or desires you have for your children and their future – keep striving, keep going. You’ll have mountains to climb and dark days to face – but keep going and never give up because the destination is so worth the at times arduous journey – this I can promise you!

So if you happen to be passing through Alexandra on a Thursday between 1.30 and 3.30pm, call in, say hi and check out Café 29 at Living Options centre – You’ll be warmed by the smiles on the faces and the best damn coffee and cake in town, I’ll stake my reputation in it!

 

Logan and his Dad

Finally enjoying the rewards for the journey travelled.

 

Keratoconus screening programme saves our son’s eyesight

By Karen Nyenkamp

My husband and I own a company that supplies optical equipment to optometrists and hospital. We have always supported the Special Olympics Healthy Eyes programme by donating the equipment they use during the National games.

At the last Special Olympics National games held in Wellington in November 2017, the University of Auckland did a special screening for people with Down Syndrome to test for Keratoconus. We supplied the machine they used for this screening process.

As you may have read in earlier editions of CHAT 21, the University of Auckland are doing a research paper to see if people with DS are more susceptible to getting it.

Our son Max was screened for it then and he did not show any signs of it. However, they did determine that there was a remarkably higher instance of people with DS having it than the general population. They are continuing their research now to see just how prevalent it is in the DS community.

They set up another screening a year later in November 2018 at the Pullman Park Special Olympics Basketball ribbon day. Max was screened again at this event and unfortunately this time he did show signs of Keratoconus.

We immediately contacted Dr Rasha Altaie at the Milford Eye Clinic to discuss Max’s results and she scheduled Max to have a procedure called Crosslinking.

It is basically soaking his corneas in Riboflavin for 30 minutes and then hitting them with a UV light for 20 minutes. This changes the cells in the cornea so that they settle down and don’t become cone shaped.

As you can imagine this would be very difficult for Max to do without going under general anaesthesia.

We visited the Manuaku Super Clinic in January to have Max’s procedure done by Dr Altaie and so far it looks like it is working. He goes back every three months for checkups to make sure.

If it wasn’t for the screening process done, we might not have caught it at such an early stage as most optometrist do not have to equipment necessary to checking for Keratoconus and Max would have had a more invasive procedure done. If left too late a total cornea replacement would be necessary or blindness occurs.

Max after surgery