MANAGING YOUR CHILD WITH SPECIAL NEEDS: STAYING ORGANIZED

MANAGING YOUR CHILD WITH SPECIAL NEEDS: STAYING ORGANIZED 

Parents of children with special needs have been described as unpaid social workers, teachers, advocates, therapists and administrative assistant all wrapped up in one! There’s no doubt, it’s a big and important job. Staying organized and on top of your child’s paperwork requires you to be proactive, but it is something that you will appreciate in the long run. Here are a few tips to make your life a little easier:

1)   The binder. Run to your nearest dollar store and get a binder and some dividing tabs. Cheap but effective! (See picture below) Divide everything into subject matter and bring it to all appointments to access information in mere seconds. Wow the professionals with your organizational skills! All joking aside, having your child’s records in perfect order really helps out when sitting in appointments and someone needs a photocopy of a report or diagnosis letter. An added bonus is one less thing to stress about!

mollybinder

2)   The calendar. Whether it’s the one on your phone or an old fashioned appointment book, make sure it is up-to-date at all times. Don’t wait to write an appointment on the calendar. I often take my phone calls in front of our kitchen calendar and mark appointments in as I talk. On Sunday night take a quick look at your week ahead and remind everyone what is happening that week.

3)   The appointments. You are going to get a lot of phone calls from doctors, therapists, professionals and government agencies. Get a pen and piece of paper and record the following information when taking calls:

– time and date of call

– name of the person you spoke with

– name of the agency

– what is your appointment going to be about?

– who is the appointment going to be with?

– approximately how long will the appointment last?

– should I bring anything?

– what kind of services can I expect to receive?

– any other questions you may have.

Have some great organizational tips to add to our list? Please comment below, or email us at: autismadvocacyottawa@gmail.com

The Moms at AAO

Awareness – How are we doing?

AWARENESS – HOW ARE WE DOING?

As a parent of a child with special needs you have probably realized by now that a large percentage of the population do not understand your family’s situation. Even close friends and family may not understand your child’s condition entirely. So, how do you create awareness without feeling like you’re up on a soapbox? Here are some ideas:ribbon

  1. Recommend some web sites they can read.
  2. Buy them a book (One very effective one for autism is “10 Things Every Child with Autism Wishes You Knew” by Ellen Notbohm) Please let us know if you have any other great book ideas!
  3. Make an offer to answer any questions they may have – no judgement, no pressure!
  4. Show them ways to interact with your child to create a positive experience. Be respectful, patient and kind.

What about when you’re out in public and you get the “stare”? I’ve heard many ideas of things you can do, or not do. Here are some examples. Find one that works for you!

  1. Make small business cards or flyers with information about your child’s condition and pass it to the person. Including a web site may be helpful.
  2. Wear T-shirts, ribbons, hats, jewelry or other awareness items for your child’s condition and hope someone asks about it. Have a quick 30 second “elevator speech” prepared when people ask you questions.
  3. Ask the person politely if they have any questions about autism/cerebral palsy/Down Syndrome etc.
  4. Do nothing! Continue about your day and be happy.
  5. Smile and say hello and wait to see if they approach you.

Whatever you choose, remember to be positive and respectful. Please let us know if you have any other great ideas for creating positive awareness. We’d love to hear about them.

How do YOU create awareness? Please comment below, or email us at: autismadvocacyottawa@gmail.com

Advocacy – How Do You Do It?

ADVOCACY – HOW DO YOU DO IT?

As a parent of a child with special needs it is important to advocate positively for your child. In the early years you’re trying to get enough therapies & services for your child – speech, OT, physiotherapy, ABA and many more. When your child is school age, you can add educational services into the mix. Maybe you want to contact a politician and try and enlist their support. It’s a busy job, and you want to do it right. advocate

Try and remember that the large majority of people you will deal with want to help your child. Try to help them so they can help you. We’re all bound to a certain extent by the “system”. Try and build a relationship with the people around you for the long term. You never know when you may encounter that person in the future, in a different capacity.

Be organized – do prep work before attending meetings for/with your child. Write down a list of the items that you want to focus on during that meeting to keep it on track. Bring all necessary paperwork and forms and photocopy them if you need to share them with others at the meeting. Research and read any relevant information such as policies, procedures or laws. Knowledge is power!

Be patient – Take deep breaths to relax yourself before going into a meeting or a phone call. Everyone is busy so going into a meeting in a calm manner will go a long way to ensuring the best possible outcome.  Remember, the issue may not get resolved in one meeting. Book a second meeting (if necessary) to reconvene and look at the issue again after having some time away to digest the information.

Be positive – positivity breeds positivity. People will remember you for your positive attitude! A positive attitude is contagious!

Be polite and courteous (but assertive). If you didn’t get everything you wanted, don’t give up. Take a breath and come up with a new action plan. Sometimes you aren’t talking to the right person. Don’t be afraid to ask to speak with someone else.

Be thankful. When things go right don’t forget the gratitude! A small gesture can mean a lot. If someone went out of their way for your child, please make sure to let them know by calling or writing them a note. Trust me, in today’s impersonal world, you’ll make their day!

How do you advocate? Have some tips to add? Please comment below, or email us at: autismadvocacyottawa@gmail.com

Autism Awareness Centre Conference – Ottawa, ON – October 24 & 25, 2013

National Gallery of Canada
380 Sussex Drive, Ottawa, ON

Ticket information is available here.

Thursday, October 24

Judy Endow

Outsmarting Explosive Behavior

Children and youth with Asperger Syndrome, high-functioning autism (HFA), and pervasive developmental disorders-not otherwise specified (PDD-NOS), and related exceptionalities have great potential, but all too often their abilities are not realized. This presentation will provide ideas and suggestions that educators, therapists, and parents can use to help a person with AS/HFA on the road to success, address problems that arise at home and in the classroom/community and how parents, educators and therapists can adjust the environment to accommodate, while not interfering with typical routines.

This presentation, based on the book Outsmarting Explosive Behavior, a Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders, describes an effective way to support individuals with explosive behaviors by using a visual system of four train cars to depict the stages of explosive behavior along with stop and go signs to show effective support strategies to use during each stage in the explosive behavior cycle. This model has been effectively used with numerous students (Early Childhood through Adulthood), continues to be a part of the Wisconsin Department of Public Instruction Autism Training Project and has been published by AAPC Publishing as a three part kit (facilitator manual, visual system and student workbook).

Practical Solutions to Stabilize Students With Classic Autism

Based on Judy’s publication, Practical Solutions to Stabilize Students with Classic Autism to Be Ready to Learn: Getting to Go, this presentation clearly delineates the nuts and bolts of what Judy does when she is called in to consult for a student with classic autism. Included are many practical strategies for supporting a student to be all he can be – his best version of self and most available for learning. This application of this information has been many a student’s ticket onward to eventual placement in a more inclusive educational setting.

Judy Endow, MSW, maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Judy does workshops and presentations on a variety of autism-related issues, is part of the Wisconsin DPI Statewide Autism Training Team and a board member of both the Autism Society of America, Wisconsin Chapter and the Autism National Committee. In addition, Judy is a member of the Autistic Global Initiateve (AGI), a program of Autism Research Institute. For more information about AGI please visit www.autisticglobalinitiative.com

Friday, October 25

Andrew McDonnell

“If You Can Keep Your Head While All About You are Losing Theirs” (Kipling): Applying Low Arousal Approaches to Everyday Settings

Whilst many advances have been made in supporting people with autism, the management of behaviours which challenge supporters is a less well understood area. This presentation will focus on how to manage behaviours of concern using a low arousal approach. This approach was developed to help supporters to practically manage ‘highly aroused’ and stressed individuals. There is an emphasis on verbal and nonverbal strategies to de-escalate crisis situations. In addition, the approach involves ‘reflective practice’ that is, ‘What is my own contribution to the situation? Low-arousal approaches include interaction, diffusion and distraction strategies; coping with challenging behaviours including debriefing – why it is necessary and how to do it, managing versus changing behaviours, physical avoidance skills and physical intervention strategies. The day will include:

  1. Background to the development of low arousal approaches.
  2. Definition of the approach (Reflective practice)
  3. Strategies for managing behaviours of concern (There will be an emphasis on practical de-escalation strategies).
  4. Group exercise
  5. Plenary session (group discussion)

Dr. Andrew McDonnell is a Clinical Psychologist and Director of Studio3 Training Systems located in Warwickshire, UK. He has a special interest in arousal mechanisms in people with autism and the management of severe challenging behaviours. Other areas of interest are stress management, person centred approaches to behaviour management, arousal mechanisms and their application to human behaviour, and sensory perceptual processing differences. Andrew’s doctoral thesis evaluated the impact of staff training in low arousal approaches and has been the subject of his book Managing Aggressive Behaviour in Care Settings: Understanding and Applying Low Arousal Approaches. The low arousal approach was first developed by Dr. McDonnell. He has lectured on this subject in Europe, Africa and Asia. This is Andrew’s first appearance in Canada teaching the low arousal approach.

The Studio III Group comprises three individual companies, all of which promote the ideals, philosophies and benefits of non-aversive behaviour management. Studio III Training Systems was the first company to be formed, and with its fusion of skills drawn from academic researchers, applied clinicians, psychologists (educational and clinical), speech and language therapists, doctors, teachers, movement skills trainers as well as nurses with RMN and RMNH qualifications. Its scope broadened to include individualized behaviour management plans and the promotion of other pro-active approaches. From this was born Studio III Clinical Services, a psychology based provider of specialist input to services and individuals alike.

 

Let’s talk about Respite!

I recently received an email from another support organization (FASD Coalition of Ottawa) in Ottawa that contained a great document on respite options in Ottawa. I thought it was so thorough and well organized that I asked if we could share it! Thanks Elspeth!

Hope you’ll find it useful.

 RESPITE CARE NOTES & SUGGESTIONS    Prepared by Elspeth Ross rosse@ncf.ca 613 446-4144 

Respite is a temporary break from caregiving  for children/youth or adults with disabilities – in-home or out of home, from a few hours of “babysitting” to a program or overnight to weekend or longer.

Respite was identified in a 2008 survey of Ontario care & service providers as one of the highest needs for families affected by FASD. A 2010 FASD provincial study investigated the effectiveness of respite services available for families of individuals with FASD, and made recommendations. http://www.fasdontario.ca/cms/resources/stakeholder-publications

Parents/caregivers can benefit by getting a break from the demands of caregiving. Respite can keep a family together. Caregivers use time for many different needs i.e. for rest & relaxation, to shop, clean the house, attend adult events. The child or youth can benefit by meeting new people and having new experiences. Families are concerned about finding trained care providers, quality of care and costs.

Costs range from $14 to $30 per hour; $30 to $250 per day, $150 – $519 for a weekend.

Funded respite is available to families of people who qualify as developmentally disabled in Ontario.

For children, apply for ACSD, Assistance for Children with Severe Disabilities. http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/disabilities/index.aspx

East Region, Ottawa 613-234-1188, 1-800-267-5111

For adults, apply through DSO Developmental Services Ontario  www.dsontario.ca   1-855-376-3737  http://www.scsottawa.on.ca/index.php/dsoer/  Service Coordination. DSOER Developmental Services Ontario Eastern Region.  People with FASD (& Aspergers) are often too high functioning to qualify. It is good to apply anyway and show the need.

City of Ottawa Special Needs programs –  give children, youth and adults with special needs, the opportunity to participate in year round programs that provide recreation and social programming.

http://ottawa.ca/en/residents/parks-and-recreation/jobs-and-volunteering/special-needs#P54_2765

613 580-2424  specialneedscitywide@ottawa.ca

Special Olympics http://ottawa.specialolympicsontario.ca/    Year-round sports, training & competition opportunities. 613 860-6184

www.respiteservices.com   Ottawa – Community Respite Services. Information and links to respite services for children & adults. This includes access to workers in a Special Services Worker Bank.

Service Coordination – Daniela Bara – 613 748-1788 ext. 240 – pamphlet available

OCAPDD  Ottawa Carleton Association for Persons with Developmental Disabilities  Respite Services in a respite home – French & English – prefer 7 days – Carole Perrault 613 225-5561 ext. 360

Association pour l’integration sociale d’Ottawa – respite  in French – Emilie Falcon 613 744-2241 ext. 240

Association québécoise des troubles d’apprentissage Section Outaouais report of respite in French  for a child with ADHD – low cost

Blackburn Agency – BlackBurn Residential and Respite Services for Youth – Karen Braley 613 295-1474

Sonshine Families – respite weekends at Sonshine Cove all year & summer camp – http://sonshinefamilies.ca/ Cathy Godard 613 834-8187 ext. 28 cathygodard@sonshinefamilies.ca

Partners in Parenting – respite care in one of their foster homes www.partnersinparenting.ca/ Christine Rondeau 613-229-7599

Vanier Community Services Centre Family Outreach program – for single parents with no support – volunteer families provide respite – Celine Paquette 613 744-2892

Main Street Community Services, Stittsville – overnight respite, summer & March break camps – Erika Winfret, Program Manager 613 831-6606

Greenland Country Haven, Kemptville www.greenlandcountryhaven.com Debra McLean 613 806-0690

Children’s Aid Society Ottawa-Carleton – Adoption – does not provide respite services in general – families need to go through Child Protection

Families who adopted through CAS contact Adoption Supervisor Deanne Walters ext. 2745 or Andree Guillemette ext. 2784 about post adoption support  services

Adoptive Parent Support Group (new) – private worker Lori Rosove & CAS worker Diane Ciravolo     The Adoption Source www.adoptionottawa.ca

Hiring someone yourself:

Good respite providers listen to the family and do what they say with the children, follow the routines. It is important to see in advance that the state of the house where the child will be is calm & uncluttered.

A Developmental Services or Child & Youth or Social Service worker or student who has been in placement in a classroom or group home or home.

For DSW Developmental Service Worker students email your DSW job posting for a DSW student to Algonquin College Developmental Services Worker Program to Jennifer Currie   curriej@algonquincollege.com  Provide this information: location, transportation, hours, pay or volunteer, what you expect

An EA Education Assistant who wants extra work – try a teachers’ website, or ask Special Ed teachers

Put an ad on Kijiji for someone with experience and/or education (DSW, CYW Child & Youth Worker, SSW Social Service Worker etc.), giving hours & pay – one person did this & had tremendous response, but not all suitable & qualified – but found an amazing respite worker who spends time with their son every Saturday.

A nanny agency offers short-term babysitting with qualified baby sitters Jennifer 613 791-1560 inapinch@bell.net  In a Pinch Childcare Services Ottawa

Buddy Families – If families make friends with others with children of similar ages & similar needs, then families may be able to have their children stay over with each other and get a break that way.

Several people present at the Feb. 5 FASD group meeting who live out of town are willing to provide respite. Contact Elspeth Ross for contact information.  Also send additional suggestions & corrections.

Autism in Canada from coast to coast to coast.

Since autism is getting a lot of attention right now, we thought we would partake in a little project to see what autism looks like across the country, from coast to coast to coast. What’s available? Do the models differ much? What’s the supportspotlight like? Wait lists? Are there lots of activities to choose from? Are there many grassroots support groups? The questions are endless.

The Moms at AAO love a good research project so please come back soon for a breakdown on our first provinces: Newfoundland & Labrador, and British Columbia!