Noah’s Dad: On Inclusion

Jed’s (Noah’s father) presentation to the SD61 Board of Education in December 2018 is published here with his permission. The Board has heard over the last year + from  parents teachers, and education assistants on the many untenable challenges of moving to full inclusion without full funding  from the Ministry of Education. (See B. b. c here for only a few of the presentations the Board has heard.) SD61  maintains challenge Programs as separate and special “segregated” classes for students assessed as “gifted”,  a “high incidence” category.  (More about gifted students here: http://giftedchildrenbc.org/ )

There are many issues to consider, among them: 

  • Social justice
  • Equity
  • Who are true peers and who chooses them (for us?)
  • What is public education “for”?
  • How do we honour student choice – and do we even offer it on occasions of more than basically trivial occasions –  when a student has difficulty communicating, or cannot communicate using “standard means”?
  • Is neurotypical hubris a thing?
  • Does everyone want to be in a regular classroom most / all of the time?
  • Where is the  space and consistent staff for students who need / choose an alternate location for most of their school day?

 

Jed: I’m here today to tell you tell you about my son Noah and his school experience so far. Noah is 13 years old and suffers from Dravet Syndrome which is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life. Common issues associated with Dravet syndrome include:

  • Behavioral and developmental delays, including self-injurious behaviour
  • Movement and balance issues
  • Orthopedic conditions, Noah has moderate scoliosis and crouch gait.
  • Delayed language and speech issues, although hard to determine Noah is probably developmentally around a 2-3 year old depending on the task at hand
  • Sleeping difficulties
  • Sensory integration disorders
  • Autistic tendencies
  • Seizures, last year Noah had 489
  • And a high mortality rate

Noah’s school experience has been a challenge like most things in his life. For grade K-5 Noah attended Oaklands Elementary where he was enrolled in a typical classroom, which I feel worked well in the younger grades K-2. I feel the curriculum level was somewhat appropriate and it gave him exposure and modelling from the other kids that he benefited from. I felt that the other students also benefited by being exposed to Noah. I would go into the class each year to discuss Noah’s diagnosis and challenges, and I found the kids to be accepting and curious. And I feel they gained a more empathetic attitude towards Noah and children with special needs. In the later grades things began to be more challenging for Noah. As the material became more advanced it was apparent Noah was no longer benefiting from the regular curriculum as it was far beyond his comprehension. Socially the gap between his classmates had widened and Noah was on the periphery, both figuratively and literally. His behaviour of severe acting out and inappropriateness was disruptive for the class and the fact that he could not keep up with the curriculum had him separated from the class. In grade four he found himself in the cloakroom and by grade five his work area was out in the hall. His behaviour at the time would suggest he was increasingly frustrated with not fitting in, he was isolated and dreaded going to school. This was apparent with a huge increase in self-injurious behaviour such as head banging on the arrival to school and his adamant protests that “school closed”. Despite the kindness of the teachers, the caring EA’s and the accepting kids of his class this was clearly a situation that was becoming untenable.

With the approach of middle school we began to explore other options in which Noah could thrive. We visited Victor school that was in our neighbourhood with the hopes that a better fit may be found. Noah being a gentle soul and a small boy for his age we were told that the behaviour program was no option at all, as the staff felt it would be risky for Noah’s wellbeing.  And the physical side was not a good fit either as despite Noah’s scoliosis and crouch gait he is an active, curious little man, as he demonstrated by commandeering a girl’s electric wheelchair while we were there, with her in it. The staff looked weary of his antics even after just a short visit.

Fortunately we found Arbutus’s MSIP program as it was called then. A class with a wide variety of special needs kids, kids who are Noah’s true peers and don’t look at him with any stigma, or worse fear, but accepted him fully and greet him warmly and enthusiastically when he shows up for class, regardless if he has an outburst or does peculiar things. It is a class that has a decent ratio of students to highly capable EA’s that are familiar with Noah and who Noah is familiar with, which is a huge thing when you live in Noah’s world. If Noah’s EA is absent, we are not asked to keep him home, as we were a few times in Elementary School because there was no one able to deal with Noah there, either from shortage of substitutes or their incapability with dealing with his needs.  We feel so much more comfortable having Noah attend the class at Arbutus knowing that if he has a seizure, there is a team of support that is familiar and capable of dealing with it. If he does have a substitute the rest of the team is there to help guide the sub through their day with Noah. Noah’s class is centred a lot on life skills and academics that are appropriate to his level of understanding. Noah and his classmates swim every week on Friday, on Tuesdays they take the city bus to music therapy at the conservatory of music, Noah has a paper route and delivers once a week to 28 homes, Noah helps in the school store, but always has his home base in his classroom with his familiar peers and staff. I cannot emphasize enough what a better fit this program is, than being in a classroom with typical children and understanding nothing that is being taught.

This brings us to the future. Noah has one more year at Arbutus despite that the program is being phased out for the inclusion model. This means next year he will be in a smaller class with no new kids coming in, which will take away from the richness of his environment. Our big fear is when he moves on to High School he will once again find himself not fitting in to classes with typical kids, in classes that have no relevance to him, being passed among an assortment of EA’s that don’t understand him fully and possibly will not have the support they need to deal with all his complexities. With the inclusion model he will surely find himself in an environment where he has no anchor and no home base.

I’m sure the inclusion model is a best alternative for some special needs kids in the school district, higher functioning kids with the faculties to cope more independently. I can guarantee from experience that it will not be a benefit for Noah and children like him. Quite the opposite, it will be a detriment to their development, skill wise and socially, it will be a heart breaking change, a step backwards. It will cause undue stress and hardship on these children, the families, and the caregivers that support them. The range of skills and abilities in special needs children dictates that this can’t be a one size fits all solution.

I fully agree there is a need for these kids to be included in the school community, but it should be done through programs like MSIP and best buddies where typical kids can volunteer to spend time with a challenged peer, and they both get the opportunity to learn from one another.

I implore you to reconsider disbanding the integration programs and encourage you to reinstate ones that have already been adjusted. Across the school district there are programs in place like French immersion, the challenge program for gifted kids, and sports academies. I support these programs because I feel if we can give kids the opportunity to reach their full potential in any area, we should.  I feel the same for kids that have special needs, I believe it is incumbent on you as decision makers to ensure we provide an environment that is safe, productive and suitable for all children. Parents deserve a choice of what structure is most suitable for their child, which ultimately will be where that child can be given the resources they need to reach their full potential. I wish more than anything in the world that for Noah that was in a typical class, with typical children, learning a typical curriculum…..unfortunately that is not the case.

Thank you for hearing me this evening and reconsidering the stance that inclusion is the best practise for all children.

About Diane McNally