It’s a busy 3 week period for our family – a new grandchild, my oldest son’s first anniversary, my son turning 16, our 26th anniversary, today Yirmi turned 6 and in two days my oldest will turn 25!

I started the morning by getting the super good news that Yirmi was accepted to gan safa (kindergarten with a language focus). (I mentioned a month ago that I had a lot of conflict about this decision and have gone back and forth for months about if I really want to put him into the school system. I decided that if he was accepted, it would be beneficial for him.) It’s been a couple of months since I met with the committee; I called several weeks ago to verify his placement and was told he probably would be placed in gan safa. But, she added, call again in a week to confirm.

So I tried to call again. And again. And again. This office is notoriously difficult to get hold of. Yesterday someone answered and told me to call the secretary of the person in charge of placements. I called her repeatedly. It went to voicemail every time.

So this morning when the head of the health clinic asked what was happening and offered to call using the personal cell number of the person I was trying to reach, I was happy to accede to her offer! And very delighted when I got the good news that he has been accepted and things are in place for him academically for the coming year.

Why, I wondered to myself, was I so worried? ‘You see, Avivah,’ I said to myself, ‘everything doesn’t have to be so hard. You were worried for nothing.’

Several hours later I got a call from someone from the office of special education in the city who after spitting out her name rapid fire, wanted to know where my children attend school. When I told her they were homeschooled, she asked about our religious affiliation. I told her I wanted to know her reasons for asking before sharing any of that information. She refused and after I refused again, she told me it’s about Yirmi’s kindergarten (gan) placement.

I knew it.

Call me paranoid, but telling them my religious affiliation was a trap that I wasn’t falling for. Here’s why. If I tell them that we’re charedi, they’ll tell me no charedi gan safa will take children with Down syndrome. If I tell them that we’re dati leumi, they’ll tell me they’re full and don’t have room, or that the dati leumi schools won’t accept him since we’re charedi (they already tried this tact in our face to face discussion).

So I told her we’re in the middle and either choice would be fine for us, that what matters most to me is that he’s in a framework that appropriately meets his needs. She really wasn’t happy with my answer.

She asked for the name of the school that my high schooler attends, the better to pin a religious label on us. I couldn’t help but laugh at the perplexed silence following my answer, because it’s a middle of the road school and it didn’t help her put us in the box. “Oh, so you really are in the middle”, she responded slowly.

So much for my happiness and relief of the morning to know his school placement had been finalized. No, she said very definitively, Yirmi absolutely hasn’t been placed in gan safa and no one was authorized to tell anyone about his placement and don’t you know all the classes are full already? And lest you think I can’t hear between the lines, it means too full for a child with T21.  Their lack of space really isn’t a compelling argument to me, since I gave in my application very early (ie before most other parents). While this year there are honestly a larger than usual number of applicants to gan safa, ‘lack of space’ simply means they’re giving the spaces to kids they view as highest priority.

It would be really nice to feel that those in charge of making these educational decisions care about my child.  I don’t have that confidence. After all, they’ve never seen him. (Knowing that putting him in an inclusive school environment means that I’ll be spending the next 13 or so years of my life fighting for his basic educational needs to be met has been a huge part of my conflict about putting Yirmi into the school system versus continuing to homeschool him. Maybe, I’ve wondered, I should save my energy to spend on educating him myself and we’ll all come out ahead?) I suspect their decisions are mostly about funding.

I don’t like to use my energy in a negative way and I’d really prefer not to expend so much energy in advocacy, but it’s all about being the squeaky wheel if you’re a parent of a child with special needs – unless you want to put him in the special ed framework. And things just got a lot harder today, when a law passed in Israel that removes additional funding for a child with special needs who is in an inclusive educational framework; they will now get the same funding as any other student.

(Here’s how that works and why it is so damaging – a child can be successfully included when he receives extra supports to be successful in the mainstream classroom. Take away the extra supports and he will fall behind and will then have to be placed in a special ed setting. Where his school will then receive full funding for him.)

On a more positive note, today we were offered a slot for a new speech therapist to work with Yirmi. (The first therapist didn’t feel she was making progress with him and that he’d do better with a therapist who had more experience working with children with T21. He was then put on the waiting list for the more experienced therapist.) When I say we were offered a slot, that sounds rather magical, doesn’t it? What it actually means is that I repeatedly approached them and told them it wasn’t acceptable for an extended period to go by while we waited for his name to reach the top of the priority list again.) I did again this morning when the director was there, and she pushed him to the top of the list right then. The squeaky wheel gets greased.

On another lovely note, we celebrated Yirmi’s sixth birthday with a barbeque dinner with family and friends. (After closely observing ds9’s birthday party, he was very clear about what he wanted! He requested a specific menu and went in person to invite a couple of neighbors to attend.)

He’s growing up so much. There have been concerns over the years that have disappeared, and others that I still have that I need to remind myself to take a long term view on and not get uptight about. And even more than that, not to blame myself for not having done more (because that’s the road I go down…) – like that he’s not reading yet because I wasn’t consistent enough. (The irony is that the two brothers ahead of him are both very late readers and I never had this guilt with them!)

I often marvel at Yirmi’s depth of sensitivity to the feelings of others and love seeing his full-hearted acceptance and love of those who are in his life. He loves learning and is always ready to go on an outing or have a new experience. He’s a great kid and continues to enrich our family!

Avivah