Mission Statement: This blog was created to provide information on getting help for autism in general while focussing on locally available resources for families with newly diagnosed children in Belleville and Quinte area.

Please browse the blog at your leisure. You are welcome to comment on the posts. If you are a parent, an autism consultant, counselor, teacher with information on autism resources available in our area, please email your information to benziesangma@gmail.com. Your information will be added within 24 hours.

Local Autism Support Groups

Parents Engaging Autism Quinte (PEAQ), an autism parent support group, meets once a month on the first Tuesday of the month. In December, instead of a meeting, we are interested in organizing a group to go to the Christmas event at the Safety Village, behind the Belleville Police building on Dundas E, Belleville. The date is Friday, December 8 at 6 p.m. Please email parentsengagingautismquinte@gmail.com if interested in joining us. If you have questions or suggestions for autism topics that are important to you so that we can invite appropriate autism professionals to speak at these meetings.

Autism parent support group meeting hosted by Mental Health Agency, Trenton and Military Family Resource Centre (MFRC) meeting is on the Third Thursday of the month. If you have any questions or require any further information please contact Orlana Bourgoin at orlana.b@trentonmfrc.ca or 613 392 2811 x 3953

For info on Community Living Prince Edward County Parent Support group, contact Resource Consultants @ 613 476 6038

Central Hastings Autism Support Group meets in Madoc at the Recreation Centre. Contact Renee O’Hara, Family Resource & Support, 613-966-7413 or Tammy Kavanagh, Family Resource & Support, 613-332-3227

Tuesday, November 14, 2017

Each To Their Own But Here's How We Found Our Way

I can tell you from my own experience how overwhelmed my husband and I were back in the days after our child's diagnosis shortly before Grade 1. We began meeting with school officials regarding school supports for our son. We knew nothing about the resources within the school board, what we could seek to access for his school needs. But we persevered. We read online what other families are experiencing and the paths that they followed. We went to the meeting table asking questions having brought with us a list of all that we know about our child’s strengths and weaknesses. We were firm with our requests but we were also respectful of the staff’s time and showed our appreciation for the efforts that they are making. We found that the more specific questions we have to present at the table, the closer we got to addressing the ongoing situations with our child at school. Looking back, I think it was easier for the staff when parents come prepared with a list of things that they see might help their child at school. It becomes a written agenda for the team to discuss and explore options. The needs might not get resolved right away but a plan is set in motion – what, who, where, when and how – will the support will be provided for the student. We also found that setting up a deadline for the outcome of any item on the agenda, allows for space for both us as parents and the staff space to put resources into place or to work out other options. My husband took notes while I made my points, brought to the meeting in written format, and verbally followed up on them. We learned much later that we could have asked for a copy of the minutes for the meeting because the staff always takes notes. This, purely for the purpose of reminding ourselves what we discussed in the previous meeting and what we could follow up in the next. As we got more organized in later years, we kept the notes from the meetings and were able to follow up on issues and steps considered as needed. Our strategy was to make and build a sustained friendly and approachable relationship with the school staff. We realized that communication's possible when both sides are talking to one another respectfully valuing each other’s input and perspective. 

Two most productive things that came out of the early meetings were 1. the communication book from our child’s teacher telling us about some of the challenges of our child’s day. 2. the resource teacher made herself available to answer questions on a daily basis when she was available. This was an ideal team approach. We learned to prioritize the top, say, three immediate needs of our child and made sure they’re met and let go of the rest. In other words, we learned to pick our battles. 

From our family's experiences, some lessons learned that I’d like to share with other parents of special needs children are 

  • write your own notes and go over them with the staff at the end of the meeting 
  • provide the school techniques and strategies that work with your child at home
  • be involved in school events as much as possible so school staff becomes familiar with the kind of person you are
  • take someone, a family member, a friend, a support worker, to school meetings. The presence of another person can help when parents become too emotional or forget to cover some points that they really wanted to
  • pick your battles wisely. Make sure you prepare a small list of child’s immediate and important current needs and present it at the meeting. Set a deadline and allow space and reasonable time for school staff to put the plan in place. 
Most of all, let the angels of patience and calmness rule over you in the face of your child’s challenging school-related situation!

Friday, November 10, 2017

Remembering the Ultimate Goal

Many parents of youths with special needs often report frustrations at challenges of getting support for their children at school. They speak of endless conflicts with the school staff. Their stories are of being called to pick up their children before the school day ends due to meltdowns, disruptive behaviour, health incidents and so on. Of lack of EA support in the classroom, of lack of understanding among the staff, miscommunication or absence of communication altogether etc. They tell of days when they felt “provoked” into “going into battle” with the school staff the very next day. They start thinking of going to the media or the lawyer to make themselves heard. The situation escalates and the problem situation continues.

No doubt the parent has a right to participate in the decisions schools make for their child’s education. School staff also has a right to disagree with the parent while being obliged to recognize the value of a parent’s opinions and to facilitate ongoing consultations. Both sides have a responsibility to be respectful and receptive to ideas, suggestions and proposals to address the matter at hand. Challenging and demeaning school staff being rude and aggressive or vice versa will simply get in the way of progress on the conversation table. Both sides need to come forward with meaningful proposals based on their understanding of the situation and be ready to discuss both perspectives. The goal of the partnership between a parent and the staff is to leave the table with a plan for next steps and the deadline when to expect implementation of those steps.

The school staff has a responsibility to conduct themselves in a professional manner in all matters relating to their job. Meanwhile, as full partner in the team working towards the success of their child with special needs at school, the following might help from the parental perspective:
  • Engage in clear written communication with the school staff stating the problem seen and firmly requesting a meeting at the earliest convenience.
  •  Always come prepared to provide with potential solutions to suggest to your school staff. This can start a meaningful discussion towards a positive end but be willing to listen and find a solution calmly.
  • ·Learn and understand the art of negotiating. Negotiating is not a sign of weakness. Successful negotiation or looking for common ground will allow for goodwill and compromises that work for the benefit of the student in question.
  •  Respectful behaviour, no matter how hard, will contribute positively to the discussions.
  •  Being well-informed on the matter and surrounding special education related policies prior to coming to the meeting will help to present a clear perspective on resources to support your child’s needs.
Most school staff in general have good intentions to support the needs of every student. Limited available resources and lack of daily support to teachers and educational assistants cause unintentional grief to and failure of the special needs students who deserve their attention. In some cases, parents might also continue to come across those habits, attitudes, traditions and policies that certain schools have always adhered to in the past. They might not adapt readily to the change parents would like to see as soon as possible. But it is likely that with time, parents will see progress made slowly but surely. The bottomline is resolving conflicts is a must so that the team of parents and staff could go back to planning for addressing the problem in the interest of the child/student to succeed at school.


Wednesday, November 8, 2017

The new Ontario Autism Program seems promising

By now most parents of children with autism are aware of the changes taking place regarding the provincial plan for autism treatment. The new Ontario Autism Program (OAP) is expected to streamline services for children and youth across the province based on each child’s needs. The new plan, which came into effect in June 2017, is expected to be fully implemented in spring of 2018.
In summary, according to the Ministry website, the plan includes a single point of access to the OAP in each of the nine service areas to make it easier for families to access services for their child. For eastern region, the access point is Maltby Centre, 31 Hyperion Court, Suite 100, Kingston, ON maltbycentre.ca 1-844-855-8340. Area parents can also contact Counselling Services Belleville and District at 613 966 7413 ex 2223.
The new plan gives families more control over the direction of their child’s treatment plan. Families will be actively engaged in the assessment, goal-setting and intervention planning for their child making it a team work among parents, OAP professionals and service providers to support a child’s needs at home and in school to come up with a flexible and individual plan. The length of treatment will depend on child’s needs independent of age, the website says. 

Another feature of the OAP is the direct funding option which is expected to be implemented by the end of this year. Parents will have the option of being on the waitlist for direct service from regional autism service provider such as Counselling Services Belleville and District in this community or receive funding to find and build their own autism team. The regional service provider will be able to provide a list of available qualified autism professionals in order to ensure safe and high quality services.
Area parents are encouraged to contact CSBD for more information on the OAP and to understand further how it might actually affect the services offered to an individual child or youth as the plan rolls out.

Friday, June 9, 2017

Summary of A Local Parent's Direct Funding Story

The new Ontario Autism Program (OAP) is being introduced this month. In that new program, children who have been on the waitlist for Intensive Behaviour Intervention (IBI) will be given a chance to be off the waitlist by receiving a sum of direct funding for their families to seek private service providers. This is good news! But what happens next, is the question that might be on parents minds. Where do we find those professionals? Are they in our communities? Probably not. If they are in our communities, they might also be fully booked and your child could be placed on another waitlist to access the services of that service provider. According to the parent at our autism parent support group PEAQ meeting in Belleville, under the old autism intervention program some years ago, her child's name was placed on both the direct service and direct funding option list. She had the choice of taking the option that came up up first. She wanted to get help for her son as quickly as possible and so she took the direct funding option. She began her search for available individual autism service providers in Quinte area and began series of interviews with individuals she found through word of mouth. She said that she was so frustrated, stressed and second-guessing herself that she wanted to give it all up soon after and put her son back on the direct service waitlist. Under direct service, the government agency responsible for the autism intervention program, has the responsiblity for planning your child's support all the way. Parent's responsibility is to simply bring their child to the agency at a scheduled time each day for the child to receive full planned program. It might be 20 hours a week or less but that is it. Parents might be given information on goals to work with their child at home but it ended there. This parent, no surprise there having known her strength and resourcefulness as far as professional intervention system for her child with autism is concerned, she pulled up her socks and decided to go through with direct funding option. After many interviews with potential candidates, again through wood of mouth she found an agency in Kingston whose representative finally gave her the full package that she needed for her child's support team. The agency had a clinical psychologist, senior therapist and an instructor therapist. Each professional had to be paid on time so she also became a clever accountant supervising payment and receipt details. She became a co-ordinator who scheduled time with each professional. She went over assessments and sat down to set new goals with the team to make sure that her child's support is on track each week. Now, many parents might have the same motivation and drive to make direct funding option work but for many, it might come as a big challenge and a huge barrier because we don't have a list of qualified private autism service providers in areas like ours to take on the demand load that's going to hit our community soon. On the upside, please know that under the new program the regional service provider you are connected to is obliged by the government to give you the direct funding option and support to find your private autism intervention team. This was not so under the old autism intervention program in Ontario. Just expect to go through some hard detailed work to gather information, focused planning and organization but know that parents of children with autism and special needs, we are a motivated and driven lot because our children need us to be.

In it for the long haul...

I created this blog with my sincere wish that those of you reading this will want to share your own stories, both good and bad, what worked for you and what didn't and together, we can make it easier for the next family beginning their own journey of discovery. By posting what you know, where you have recieved certain services, who you have talked to, whose expertise you trust, how you navigated the school education services and by responding to questions in the discussion thread, know that you have helped a family in need. So, parents, experts in the field, counsellors, teachers and everyone who has any information on resources available, please feel free to post on this blog.