Supporting Students with Muscular Dystrophy

Strathmore North Primary School.

2006 20122006 - 2012

Friday, 23rd March 2012.

Anne PatralakisAssistant Principal 2004 – 2011

A di ?Audience? Welfare Coordinators Parents

Teacher Teacher Primary Secondary

Aides

Year Level Year Level Other

O S h lOur School

Located in W.M.R.

Banks of Moonee Ponds Creek Banks of Moonee Ponds Creek

Eastern side of Essendon Airport.

Established ‘leafy’ suburb with sporting fields, bike tracks.

School built in early 1960’s, building upgrade 2010.

Our Community Stable enrolment of 350 –360.

Many families own homes, involved in local sporting clubs etc.

Strong sense of community.

Low Educational Maintenance

Increasing NESB, but few ESL.

Significant intake of Preps from the local preschool.

Overview 3 boys – Currently in Gr. 6, Gr. 3 & Gr. 1y y ,

All have Duchenne MD.

2 are brothers, both diagnosed in the latter months of the elder child's preschool year.

The younger had 2 sisters attending SNPS prior to his diagnosis in mid pre-school year.

All perform academically at an age appropriate level and actively participate in all school programs.

3 individuals, with differing personalties, needs & strengths .

O iOverview All are, currently, independently mobile within the y p y

school environment, including toileting.

Due to increasing fatigue, there is now an application in progress for an electric chair for our Gr 6 student inin progress for an electric chair for our Gr 6 student in anticipation of future needs.

Anticipate the chair will be introduced this year. The process will be supported by the physio, visiting teacher and SSG and clear processes put in place for safety (L plates?)

So far, our experiences at the different stage of school have been quite similar, for all 3 boys.

A T A hA Team ApproachDiff t l b t f i Different roles but same foci

Welfare / PSD Coordinator Class Teacher & Year Level Team Aide/s Specialist teacher All staff

Role clarity SSG Supported by OT, Physio, Visiting Teacherpp y , y , g

Our Shared Responsibility

To Provide Inclusive Education - ensure all students have access to a quality education to meet their diverse needs.

Students with a disability are valued and participate in all aspects of school life.

To educate other children and create a more tolerant community.

3 Specific Objectives

Student Learning – to maximise a student’s potential for growth and development in discipline based, personal & interpersonal learning & independence in learning.

Student Engagement & Wellbeing – to motivate and enable students to participate fully in their education and wider school lifeeducation and wider school life.

Student Pathways & Transitions –successfully transition students to, through and from school in a manner that maximises their potential for growth and development

Our Pre MD Experience Strong student welfare program based on values:

* Respect * Personal Best* Responsibility *Independencep y p* Team Spirit *Friendliness* Caring * Honesty

Established Program for Students with Disabilities –included students with intellectual disability, autism, vision and hearing impairments.

No students in recent years with physical impairment, so neither teachers or aides had much knowledge in this areathis area.

Core group of teachers and aides at the school for a number of years.

A staff and school culture committed to the wellbeing of all students.

Physically One ramp (with a gate at the end), some hand rails

and enlarged ‘disability?’ cubicle in the boys toilet.

All installed in 1980’s, few (if any) would meet current standards for new buildings.

The government’s $2m building project came at just the right time for SNPS - 6 class rooms, level entry access, all ability toilet and ramps to original building.

Initial Transition – Kinder -Prep With both families, the timing of diagnosis

coincided with school entry.

Very emotional and difficult time.

Extra challenge for the family with 2 boys and no established relationship with the school.

Gathering Information Essential MDA – our key support. Family – discretion / timing required. Pre-school.

Challenge for staff emotionally however empathy, not sympathy needed.

Professional support, reassurance and willingness to work with the family.g y

All 3 transitioned with a large group of peers from the local pre-school a huge support for child &the local pre school, a huge support for child & parents.

Informing Staff - Privacy

Balance family wishes / child's safety & welfarewelfare.

Children unaware (extended family & friends )unaware)

Terminology – implications

Initially, only those working directly with child -Prep teachers & specialists, aides. Welfare

di tcoordinator.

Privacy & Terminology stressed.

Referred to as a muscular condition –muscles get tired. g

When deemed appropriate - PD for whole staffstaff .

Note in CRT folder to discuss with team, as with other medical / welfare matters.

Cl / S h l M difi tiClassroom / School Modifications As guided by OT / Physio, Kinder & Family.

Prep transition program of 4 sessions enabled us to assess and address potential challenges.

Prep rooms are located with 3 steps with handrail, close to ramp and toilets.

C id ti Considerations Room location – distances Handrails / ramps Chairs (with Arms?) / tables suitability Chairs (with Arms?) / tables suitability Layout of room – trip hazards (carpet squares?) Seating in Art Room – height, stools. Allocated locker / bag hook. Allocated locker / bag hook.

P G d 2Prep – Grade 2 Eldest had no funding until Grade 2, others were

funded from Prep.

Aide time used mainly for yard coverage, PE, PMP (perceptual motor program)

Yard supervision is for safety but also to monitor / prompt inclusion or modification of activities. Communicate / record falls as per school process.

Where possible / appropriate the boys were matched with another PSD child to increase aide support time for both Act as classroom assistantfor both. Act as classroom assistant.

P 2 M difi tiPrep – 2 Modifications: Seating as recommended by OT- specific

chairs with arms / footrests purchased.

Couch / Seat provided to rear of mat area. Boys choose if / when they wish to sit on it.

Couch seated 3, so teacher set up roster for others to share… to avoid ‘the rush’

**** ‘ Explanation to other students - **** ‘s muscles get tired.

St d t btl t t d t ‘ lk ith / Students subtlety prompted to ‘walk with / wait for ****

Allowances made for tiredness, option of resting during PE, PMP if needed.

Option of sitting on a seat during assembly, rather than floor.

Excursions discussed with family – need for wheelchair, stroller considered.

Swimming- Aide / parent allocated to monitor movement / dressing.

Strategic lining up procedures, allowing time to walk to specialist

Main Points P 2 Main Points P-2 Participate in the normal school program Safety Inclusion & Independence Building relationship with child.g p Self advocacy & choice (where appropriate) Ongoing Communication – home, school, child Be conscious of withdrawal from class OT etc Be conscious of withdrawal from class – OT etc. Falls

Monitor. process for assisting – self / provide object, eg

chair Manual Handling Training

Internal Transitions Team approach- everyone involved needs to

take responsibility for such things as:

Thinking ahead about room locations- steps, hand rails, ramps, distance to toilets, specialist rooms.A th t ff / t d t h d Are there new staff / students who need informing? How?

Ensuring appropriate furniture / equipment is transferred/ purchasedtransferred/ purchased.

Lockers / bag hook location Thinking about next year’s (or further)

programs eg. Camps, excursions well inprograms eg. Camps, excursions well in advance.

Considering continuity of teacher / aide. Ensuring a core group of friends in new class g g p

to maintain support group.

Grade 3 - 6 As for Prep – 2. Needs addressed as they present.

Self advocacy skills & choices!

Aide time - yard coverage, PE & Sport and i difi ti fencouraging modification of games as necessary.

Greater modifications to Physical Education lessons become necessary with an emphasis on participation–beco e ecessa y t a e p as s o pa t c pat oeg provide a ‘runner’ in t-ball if needed. Allocated timer / umpiring if not able to participate…….. At times may choose to be spectator if tired, provide encouragement or coaching.or coaching.

Technology to support within class - Laptops / Voice Recognition software.

Interschool Sport:

Allocated assistant coach of the cricket team, which won the district finals, also receiving a medal.D i b ( ith f i d ) h t Driven by car (with friends) when teams were walking to local playing fields.

Athl ti S t / C C t h i i Athletic Sports / Cross Country – choice given re participation / assistance. Allocated commentator.

Offered and accepted the role as one of the ‘sound men’ team for assemblies / events.

Main Points P 2 Main Points P-2 Participate in the normal school program Safety Inclusion & Independence Building relationship with child.g p Self advocacy & choice (where appropriate) Ongoing Communication – home, school, child Be conscious of withdrawal from class OT etc Be conscious of withdrawal from class – OT etc. Falls

Monitor. process for assisting – self / provide object, eg

chair Manual Handling Training

K P i t 3 6Key Points 3- 6 Participate in the normal school program Safety *****Inclusion & Independence****p Maintaining a relationship with child. Self advocacy & choice (where appropriate) Ongoing Communication – home, school, childOngoing Communication home, school, child Be conscious of withdrawal from class – OT etc. Falls

Monitor Monitor. Process for assisting – self / provide object,

eg chair Manual Handling Training g g

CCamps Our eldest has attended 2 outdoor education

(W k & L d N th t ) d i ffcamps (Weekaway & Lady Northcote) and is off to Canberra next week. His mother will be attending camp for the first time due to it’s distance & duration 4 nights compared with 2distance & duration, 4 nights compared with 2.

Welfare coordinator visited both outdoor camps i ith th d di d t ti lprior with mother and discussed potential

challenges with camp staff. Canberra was ‘checked out’ 2 years ago in anticipation.

A bus with a lift was introduced in 2011 years ago, when climbing the bus steps became too diffi ltdifficult.

Weekaway’ is not conducive to wheelchair access but was still suitable at the time. A quad bike was used as transport to activities located psome way off. (with parental permission, of course)

L d N th t i ibl d t it Lady Northcote is more accessible and a transit chair was taken in case it was needed.

Staff are mindful of inclusion when selecting Staff are mindful of inclusion when selecting activities – eg canoeing instead of raft building. Archery instead of orienteering.

An aide is allocated & choices given if tiredness sets in………. He pretty much did everything!

A Bottom bunk and strategic showering monitoring are a must.

Y 6 7 T itiYear 6 – 7 Transition A path yet to be travelled by SNPS.

Encourage the family to start looking at g y gsecondary schools early. Grade 5, at latest.

The local school may or may not be appropriate.

Support by organising an SSG as soon as a decision has been made, to communicate processes in place to support the child in primary setting.

A h t f th hild d f il t A huge step for the child and family- support, support, support.

Physical Environment y A site assessment by an OT will assist with identifying

immediate issues and long term planning.g p g

Be observant.

Potential Trip hazards Carpet Squares – remove / tape down Cords – cover / tape

K bi i d d / i t ll Kerbing – grind down/ paint yellow

Some creativity with class placement over the years may be needed- we were advised that 1 ramp was allmay be needed we were advised that 1 ramp was all that we were entitled to and would be funded for.

Car parking for drop off and pick up.

Informing students / other parents. For our 2 siblings, both classes (&

dj i i l ) d h i f iliadjoining classes) and their families were informed concurrently. The eldest was in Grade 4, the younger in Grade 1.

This process is yet to take place for the youngest student.

The decision of timing, was determined by the family and the boys themselves.

Both boys were given the choice of sitting in / out of the session. Both chose to be present.

It was a very positive experience.

I f i t d tInforming students We chose to have a representative from VSK We chose to have a representative from VSK

speak to the students. She had worked with the family and was well known to the boys.

Staff were fully briefed about the content, prior.

Through our references to muscle tiredness and Through our references to muscle tiredness, and observation since Prep, the students were fully aware of challenges the boys faced.

The session provided them an explanation and assisted understandings as to why.

They key messages were:

Muscular Dystrophy affects muscles. The role / types of muscles were discussed. The condition is genetic it is not contagious The condition is genetic, it is not contagious,

it does not affect the brain. Exercise / good food will not ‘fix’ MD and it

does not get better, a wheelchair may be needed one day.

Symptoms- tiredness, slower, more difficult movements.H i ht th hild f l ? How might the child feel ?

How can you help?

The students were amazing, the level of empathy and sensible questions in both year levels were uplifting.

Both boys responded very positively to the session.

Informing other parents A letter to families was sent on the same day as

the session with the students.

The letter referred to Duchenne Muscular Dystrophy and the longer term implications that were unnecessary for children to be aware ofwere unnecessary for children to be aware of.

It stated facts but it also asked for support, understanding and inclusion for boys and theunderstanding and inclusion for boys and the family, basically treat them the same as everyone else.

This was a huge leap of trust on the part of the family.

The response was very positive with a number of parents approaching the mother to thanking her for sharing this information with them.

A iti jA very positive journey

But…………….. Not

‘all roses around the door’There are certainly challenges, but aren't there with any kids, families

d h l ?and schools?

B h i l A t h i dBehavioural Aspects we have experienced Determined by the individual and their

lipersonality.

Effect of Medication?

Tiredness / crankiness can be apparent toward the end of the day and week / after a lunch / recess break / after PE or sportrecess break / after PE or sport.

A d G d 2 / 3 f th Around Grade 2 / 3 as awareness of the condition increases, some sadness and / or inappropriate behaviours.

I i t B h iInappropriate Behaviours Have the potential to damage peer connectedness.p g p

By Grade 3 or 4, students can have a tendency to avoid playing with those who do not have ‘getting along’ skills because they make playing ‘hard’along skills because they make playing hard

Essential that the school works hard with the family to preserve this connectedness and inclusion, for students with MD.

Whole class social skills programs, run by the school psychologist assisted this processpsychologist, assisted this process.

Recommendation of individual counselling for the child, (preferably - outside school) may also be appropriate. …….. Welfare coordinator is probably most appropriate person to give this advice.

Parental Expectations All parents want the best for their child and parenting is

stressful. Add in MD and extra understanding by the school is needed.

Sometimes parental expectations can be unrealistic /or align with DEECD policy - the school can be ‘the messenger that gets shot’

Being honest –’ We are not MD experts or perfect, we will overlook some things, despite the best intentions.

Apologise when appropriate, work to mutually acceptable solutions.

Don’t take it personally – ‘Sorry, glad, sad’

DO EVERYTHING TO BUILD A POSITIVE DO EVERYTHING TO BUILD A POSITIVE, WORKING RELATIONSHIP WITH THE FAMILY.

Email contact with parents has served SNPS well.

We faced a challenge when…….g When we placed a child in the Prep room without p p

the hand rail – the rooms were adjoined, but to use the hand rail, he would have had to enter with the other class. He was fine in February, but by July !!!!by July….!!!!

When the ramp to the portable was installed on the adjoining room- same scenario as abovethe adjoining room- same scenario as above….. DEECD's fault this time!!

When we put down a new carpet square in the When we put down a new carpet square in the Art room.

When a spontaneous walking excursion along p g gthe local creek was organised without thought given.

When we arranged for the aide to drive a student who didn’t always behave appropriately for them.

Wh t t d t i t i t d When we started to use excursion tags printed from CASES and found they had medical information included from the data base…. Rewording required!Rewording required!

…… But fortunately we have developed a strong working a mutually respectful working g y p grelationship with the family, who know we genuinely have the best interests of the child at heart.

RELATIONSHIPS, RELATIONSHIPS, RELATIONSHIPS!

The Most Important Relationship of All - The Child

Child + teacherChild id Child + aide

Child + welfare coordinator

Role Clarity – ‘good cop / bad cop’

Child + peers Child + school

Connectedness to others = INCLUSIVENESS.

And Finally………..

A positive attitude.pThink outside the square.

Di it d R tDignity and Respect.