Try Walking in a Parent’s Shoes

While writing recommendations for future Education Accessibility Standards, I have approached parents and teachers of children with learning disabilities and asked them what their experience is with Individual Education Plans. These are their answers to my main question: What was the biggest barrier that you have encountered when dealing with your child’s educational needs.

Nancy,  mom of 2 children with IEPs had different experiences for both children.

“I found that with my older child in high school they did the minimum amount they could. We felt like several of her teachers weren’t even aware what was in her IEP. But my son was very different situation. I think because he was in a special classroom all his needs where met. I really felt like his teachers truly understood what was in his IEP and had a clear plan on how to accommodate it. There is really no data base available to explain what facilities or accommodations are available. Just after my son was diagnosed with a learning disability his principal called me and said ‘we have recommended Jacob for the communications class’. The first thing I did was try and look up information that was specific to the Peel School board – nothing existed. We were told to just accept the placement and we could change our minds later. I would have preferred a clearer idea of what was available.”

Lisa, Adam’s Mom 

“Personally I think schools use IEP instead of holding kids back. I wish in elementary school they would have held Adam back a year. I believe he would have done better. All students in elementary school seem to get promoted to the next grade even if they are struggling in that grade. They say because holding them back they may be teased. I think it is because they don’t want bigger class sizes.”

Mariana, Andrei’s Mom 

“Andrei was 10 yo when we immigrated to Canada. After 3 months spent in Canadian primary school, his teacher told us that we need to talk. Andrei’s dad and I went to school at the end of the school day to face the truth that we knew already: Andrei needed specialized help with learning. We had to face the reality: although a smart kid, Andrei had learning difficulties and he needed help. He was referred by the school to a psychological evaluation but we were warned: it will take months if not years until he was going to be seen by a specialist. Neither I nor his dad had benefits from work (I was the only one working at that moment) and we couldn’t afford to pay for private evaluation. His teacher had a brilliant idea: to go to our family doctor and to ask for a referral to a pediatrician. And that was the path we took. Yes, it was a long process, 6 months, but by the end of the school year we had a report and a somewhat understanding of how we could help Andrei.

Unfortunately, next year we had a different teacher. And it felt that going through mud. Whatever progress we made in grade 5 it was totally annihilated in grade 6. 

A nightmare of a year. Grade 7 meant that we changed schools. At the new school, I asked for a meeting with all the teachers involved in Andrei’s learning in the first week. The psychologist that did the evaluation attended the meeting as well. A plan was made for Andrei to address all his needs. What his doctor strongly recommended was a laptop for Andrei to learn to type, as his hand writing was slow, and unreadable. Again, we were advised to do something because by the time the laptop will be available, Andrei 

would’ve being out of that school. We asked the school to still apply for that laptop, and to give it to the next student in need. We bought a laptop for Andrei and it was the best spent money. Andrei received special learning accommodations in high school as well. It was time for another psychological evaluation and that was done at the high school, after hours. His needs were again identified and he was helped at every step. Andrei finished high school as an Ontario scholar and he is in the 4th year at University of Waterloo, Legal studies and Sociology (where he has special accommodations in place for his exams).

DENISA mom of Alex, autistic child

Being a parent of a special need kid comes with a lot of hard battles (hassle, frustrations, obstacles and continuing therapies) and research to help you make your child life better. Beside all the above issues the parents are dealing with the education system too. The special education committee from the school board is a very complicated department. Beside the managers it involves a lot of specialists: psychologist, itinerary consultant, speech language pathologist, occupational therapist, etc. The public and Catholic schools have their internal education committee that includes consultants and teachers and assistants to write the individual educational plan for the kids that were identified with special needs. But before they can do that, all the flagged children need to be assessed by a school board psychologist, unless the parents agree to do it privately to speed up the process that can take at least 9-12 months in a school. After this assessment the child will get a shared support most likely unless he/she is identified as severe and the parents know how to deal with the system and push for a 1:1  teacher assistant. You still have to wait for assessments from the speech pathologists (that are not many in the board) to establish if the child can receive a communication device based on his/her needs and also to train the teachers that will work with your kid. The communication device will have to be approved, then purchased and programed and that takes at least 1 year. Then if the child has sensory needs (all the moderate to severe cases are dealing with them) the occupational therapist needs to be called to asses him/her and offer strategies to the teachers how to work with the child. On top of these problems, the special needs children are dealing with emotional issues and frustrations and they need a behavior socialists to help him/her- the school system is lacking a lot in this area.

All the above professionals are not working directly with your child, will just provide assistance and strategies to the teacher (if the main teacher is willing to include your child in the group activities and the class goals, most of the time is not happening because the teacher assistant is helping the special needs kids) and the teacher assistants. 

The above information are not presented to you from the beginning, you as a parent constantly need to follow up with the school and the board, do extra research and keep you informed so you know how to help directly the teacher assistant first of all and also to keep an open communication in order to be on the same page regarding the child’s progress ( most of the time the child is doing extra therapy and work at home privately in order to supplement the school so he/she can progress in the right direction even though with small steps). You are the liaison between school and private therapists, so you also have to schedule meetings and be on top of all of these puzzle pieces in order to keep the consistency and the routine in place so your child is making progress and feeling happy.

One of the most painful problems that I’ve been dealing with for years is the IEP= individual educational plan. The school committee is not assessing the child properly and is not taking into consideration the parents’ feedback. Most of the time the parents are doing a lot of private therapy and all the specialists are trying to offer support to the school regarding the main goals and how to achieve them. All the suggestions, strategies, tips and videos that are provided from the parents and the third parties (the private organizations and therapist that are helping the family privately) haven’t been taken into consideration accordingly with the child’s needs. 

Most of the time the school committee will copy 80% of the previous IEP and the changes that are flagged by the parents and the SLP and OT are incorporated in a very small percentage. It should be an open meeting that includes all the parties that are involved in helping the special need child. But it is not- the school has too much freedom in the way that they are creating the IEP and they are doing it in a very superficial way most of the time.

How much time do you invest in finding out the information on the services provided for your child by the province?

We invest quite a lot of time in researching and inquiring about all the therapeutic, educational and social programs due to the way the system is structured. There is no transparency…

What happens if you don’t agree with the IEP, how long does it take to see a change or your worries addressed?

In the last 2 years I didn’t sign the IEP, that means I didn’t agree, and I address some of my concerns and nothing changes on paper, I was able to make them incorporate some of the goals and advices from my team but only because I had a good relationship with the TA, they do care and want to help these kids 100% because at the end of the day they can make a difference, the child is happy and they feel good about their job. At a management level it’s not easy, most of them tend to be by the book, you need to beat them with their own weapons, even in this situation they will say yes maybe we can do it and will do it their way and that’s it. They keep saying these are the rules, case closed.

What would you change about the procedures if you could?

I’d offer more resources to the parents and school, I would structure the process more and make it straight forward – always listen and take the parents’ word because they know their kids the best, incorporate pretty much everything that they do privately in the child daily routine in school so everyone is on the same page and have meetings every 4-6 weeks or as often as possible so by working together the system really helps the special needs kids to progress and be appreciated. They are smart, they teach us so many lessons all the time.

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