Forced to Choose Between Therapy and Education.

There are certain skills required for learning, that need to be actively taught to children like my son: Skills that are taken for granted in most “normal” children, and therefore skills that are not a natural part of the curriculum in a mainstream school. Because of this, it was in my son’s best interests to start his schooling at a Special Needs school, where they understood and worked on his issues with basic verbal communication, sensory and anxiety issues, and inappropriate and disruptive behaviours that he has little awareness or control over. He also struggled with the most basic social skills, so working on this – along with all those other issues – were part of his daily curriculum alongside maths, art, reading, and all the other usual topics.

By Shovelling Son

It’s given him the grounding that he now needs to enter mainstream schooling; or rather, to attempt to enter mainstream schooling. Whether that attempt is successful or not ultimately depends on what supports and therapies he will be able to access within the mainstream environment. He is still entitled to some of what he received in a Special School, but I have been warned that it would be far less frequent, more difficult to access, and will quite possibly be inadequate for his current needs.

So why are we attempting to mainstream him, knowing full well he will lose significant supports and services that he still requires?

In part it is because of his age. My son is seven, and we have been told that if we leave it much longer, the difference between him and his school peers will become too obvious, making it harder to successfully (if ever) integrate him into mainstreaming.

Again then, why do we want to mainstream him at all? That comes back to the very things that get taken for granted in mainstream schools, the things that he cannot readily access in a Special School: The frequent and daily opportunities to practice and have more challenging social interactions and conversations. My son doesn’t really have someone who is his “equal” in this area in his current class, to practice with, other than adults; adults who can’t give him that level of one-on-one tutoring (socially or academically) because they have a group of other high-needs students that they must also teach: If one student doesn’t fit well into the class anymore, and giving them what they need will impact too much on their classroom peers, it makes sense to find a better fit for them. This is the same reasoning that might be behind taking a child out of a mainstream school and placing them in a Special School, here it is just running in the other direction.

So, in a very real sense, I am being forced to choose between the therapies my son still needs (occupational therapy, physiotherapy, speech therapy, etc), and a more suitable (more challenging) education and social environment. It occurs to us as his parents that we could keep him in the Special School and supplement him with higher education opportunities outside of the classroom. Similarly we could put him in mainstream and attempt to supplement with extra hours of therapies. Neither option is ideal for a raft of reasons, including time, money and the daily experiences he’d still be having within each school. And yes I’ve thought about homeschooling him, but I have another young child and a part-time job, so homeschooling is not ideal right now either.

I need the school that doesn’t seem to exist: The one between mainstreaming and Special School. Perhaps, an autism specific school, for children who still need to access therapies everyday, and as part of their curriculum, but are being more academically and socially challenged like in the classic mainstream environment. I want a school where my son has someone with experience and knowledge about autism, keeping an eye on him, but also keeping enough distance to encourage his independence and confidence. A school that provides enough structure for security and safety, but enough freedom for self-expression and self-discovery. A school that wants my son to be there, and feels confident that they are properly resourced and knowledgable enough to cope with his challenges.

A school, that doesn’t exist; at least not here, and not now.

In a way, an important way, I think every school could and should be like that which I described; one that is willing and able to respond to each individual child’s strengths and weaknesses, whilst providing the general opportunities of social interaction and independence that come from the school experience. I’m aware that modern homeschooling does meet those key criteria – when it’s understood that part of the homeschooling curriculum is actively engaging the child in social experiences too – so I can see why that option is so popular among parents of autistic children who just don’t seem to fit in either a Special School or a mainstream school.

For now though, we as a family must make the choice, which in its starkest form, is that between therapy and education. We have to make the decision now. If we make the right decision, we can change my son’s life for the better; the wrong one, could stagnate him or even make his development go backwards (towards higher anxieties and social withdrawal, for instance). This is not about choosing between different decile schools, and who’s of my friends’ kids go where, and what school is linked with good university entrance rates, or any of those typical issues other parents talk about. For my family, this is about choosing a type of future, and not having enough options to feel secure that any choice we make will genuinely be in my son’s best interests right now. I don’t truly know what to do.

If you’ve had to make a choice like this, what did you do, did it turn out well?

What would you do?

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9 Responses to Forced to Choose Between Therapy and Education.

  1. Perhaps investigate the possibility of having an Applied Behavior Analysis therapist accompany your child to the mainstream school? That option can provide the best of both worlds.

    • Nice idea Neurobonkers.

      Unfortunately there are rules about who can be in a classroom with a student (as I understand it), since they need to formally approve anyone who has regular access to all the children and there are issues around work place conditions and numbers of people per room and priority of work going to to existing teacher aids, and all that other stuff that makes the school say “no.” As I understand it, even I as his mother would not be allowed to stay in the room to help my son as an ongoing presence. It’s a nice thought though, and I appreciate the suggestion 🙂

  2. Hilary says:

    Have you found a welcoming school yet? I think it is the culture of the school that matters. If they welcome your child they will also welcome children from diverse ethnic and family backgrounds, and foster a culture that everyone is learning all the time and they the teachers don’t have all the answers. They are likely to be more child-centred and innovative. Just build a good relationship with the school so that you can share useful information..

    Just a note – having been around lots and lots of children and young people with autism over the years, including my own – they behave better and are more relaxed without their mothers around. However hard it is for us mothers, we need to give them dignity of risk. This means being with their age peers in a regular school.

    • Hilary, yes we have found a school, it was only finalised yesterday.

      I don’t personally believe that emphasis on age is relevant to what is best for our children, nor do I idolise mainstreaming; the fact is the mainstream schools do not have the resources or training to do the best by our childen, but the special schools do. Both mainstream and special schools have been very open with me about that, which means I must choose between the benefits and disbenefits of both options. Ultimately, we came down on the side of mainstreaming, but I am open-minded to reversing that decision if it’s in my son’s best interests. It’s been a very hard journey to even reach the point we are at now, and a lot is left to be done before he can sit in the classroom next year, but I’m going to do everything I can and must to give him his best shot!

      Thanks for your interest, and for sharing your thoughts on the issues.

  3. thorgerdur says:

    An aide is necessary and an aide trained in aba is optimal…my son goes to mainstream school and so far so good unfortunately his aide is not aba trained but he likes her and there is a connection and she is a lovely person with lots of common sense. It is not all good but a lot is good and he is happy, we continue a homebased aba therapy where I play the therapist..i cannot afford to pay for a therapist but we have a professional consultant…so we continue to see progress, A mainstream school provides the opportunities for training social skills with peers in and hopefully a gateway into society…

  4. This is my current dilemma ( and many of my autism mama friends) here in Australia. I choose SN class for 3 and 4 yr old kindy and will attempt mainstream next year- with similar concerns as yours. I did find the ‘ideal’ school for my son during my 2 yrs in the USA – so I know that school we all hope for does exists- just not in Australia or NZ yet – http://kazbrooksblog.wordpress.com/2012/08/17/my-experience-of-autism-and-inclusivity-in-the-usa/

  5. Amy says:

    I believe there is a way for you child to be mainstreamed into a classroom and receive the needed services for him to be successful in an academic setting. It is important for your child to be in with typical developing peers. Many times students are in a more restrictive setting (learning support or life skills classrooms) for the majority of the day, however, they are able to join the general education classroom for parts of the day (different subjects, lunch, specials, etc). As for the services, you son is entitled to a Free Appropriate Public Education and his Autism is covered under IDEA. Therefore, you should request a meeting to sit down with his potential teachers and professionals (general ed teacher, special ed teacher, OT, etc) and discuss his IEP and the services that are needed for him to be within the general education classroom for some of the day and be successful. His services should be taken away simply because he is being transferred to a new school.

    • Amy, the system in New Zealand is evidently very different than that in the US (I’m assuming you’re in the US from your reference to the IDEA legislation). My son was already in one mainstream subject, but because of zoning restrictions, he couldn’t attend more than one such class. Thanks for the thought anyway.

  6. angelina258 says:

    This is a tough situation I have seen several families face. Unfortunately I have no awareness of services, laws, funding, etc in New Zealand. I’m in the US. But, what I do know is that academics are only part of the pie. Is it important to learn reading and writing and math? Of course. But, I am a huge advocate for prioritizing based on YOUR child’s needs. For example, I have worked with a few families who would rather I teach their child 3 x 3 = 9 than teach him how to go potty by himself, get dressed by himself, etc etc. What good is reading comprehension or spelling tests if a person cannot talk to peers? What good is math if they cannot get their needs met either by asking for something or learning to do it themselves? Academics alone will not help a person live a maximally independent life. There is much more to it! To me…daily living skills are far more important than academics. So, my advice would be to know what you value most, and why you value it.

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