Now that the holidays are behind us, life is starting to fit into some sort of routine — something even more crucial for a special needs family.
Parents of children with disabilities have the added stress of figuring out how to arrange support resources, therapies, and tutors into a schedule that syncs up with the rest of the family and work schedule. Move one piece, change one therapy, and just like a series of dominos, the whole structure collapses when one piece falls.
To add to this stress, Caila (my 14-year-old daughter with Down syndrome) is in inclusive education here in Israel, and when seeking support, we have regularly been sent in circles with the catchphrase “if you want a lot of resources, then your child should be placed in Special Education.” Special ED is not Inclusive Education!
My child is coping, capable, and learning. I look at the progress she made last year – not at the equivalent pace of her peers, but she moved from point A to point B. However, her progress and ability to cope in this environment are very much dependent on having support. Without it, Caila cannot continue learning in this environment. With the right support, she demonstrates her ability to learn and progress in this environment: she shows us “I CAN DO IT.”
For the long-term benefit of her being included in society as well as maximizing the impact on Caila’s skill-building during her school years, we regularly argue with the establishment while personally motivating her to be in inclusion as long as she is progressing.
Once we finally get the resources approved (yearly), it’s back to logistics. The hourly rate that the government pays for a support person (sayaat) in Jerusalem is approximately 29 shekels – less than a cleaner without papers. As it is, it is almost impossible to find this person. It should be noted – the support person is not a babysitter, but someone responsible to help teach the material being taught in the classroom to my child. Many people capable of teaching the material and supporting Caila through inclusive education are understandably not willing to work for money that’s equivalent to what a 15-year-old earns babysitting for an hour.
How do we then take this approved support as part of the national basket of services and make it work for enough hours for a child with special needs/disability to be in school, adequately capable to progress and grow within inclusive education?
There is a third part of this, anecdotally, that has been an added issue in this already complex task of establishing and maintaining support for a child with special needs in inclusive education: it is most often that the people who take on this role are young women who end up getting pregnant mid-way through the year, so even once we have finally found someone good and we are so grateful, there is a lack of continuity from year to year. We spend a whole year investing in them- training them, teaching them, engaging with them, bringing in private resources to help them gain certain skill sets or perspectives or understanding of our child, and just as finally real progress and routine are established, we now have to start all over again for a new school year.
I cannot explain just how incredibly stressful finding someone willing to work these hours for this pay with this specific academic demand required of this support person (who also needs to live nearby and be able to speak Hebrew at a higher level). Often, Olim (new immigrants in Israel) apply for this job, but we, unfortunately, cannot hire them as the position requires a high level of spoken and written Hebrew.
So how do we find someone to help support Caila through inclusive education in the classroom?
Pray. Pray a lot. Pray some more. I post on every single Facebook group. I have the post translated into Hebrew. I reach out to Israeli friends and ask them to post as well. I ask friends who are studying psychology, social work, and education to post in their student WhatsApp groups and social media. I send it to any therapist I’ve met along the way to send to their network. I post on all community WhatsApp groups in my neighborhood and all the special needs WhatsApp groups that I’m in. I contact people who helped my kids out in the past as they are often out and about in university and have spare time between courses. I ask them: please think if you have any sisters, friends, or cousins – please share!
Every year it’s a mystery how I end up connecting with someone. Even when applications come in, they need to be screened. It’s not a given that just because someone is looking for a job to pass the time that they are fit for various reasons. The biggest requirement is undoubtedly the ability to adapt the high school level curriculum to Caila’s abilities while pushing her at her pace. While the school provides some level of training, it is very limited compared to what this person needs to be successful in this role.
This year, after a very stressful search (while traveling all summer), we were finally connected with Caila’s new support person – Yafa Greenzweig – just in time for the school year.
May we never lose sight of our goals, nor the will to keep fighting for them, no matter how impossible they seem.