We had such a beautiful bar mitzva celebration.
Here’s a message from someone who attended synagogue services on Shabbos morning:
I had such a great time in shul. It was so heart warming to see all of Yirmi’s friends and fans coming together.
It was so touching and encouraging to hear his Torah reading. Some were moved to tears.
How blessed he is to have been put in such competent hands as yours, Avivah.
I was surprised by how crowded it was during the Torah reading, and as it led up to Yirmi reading his portion, it was packed. I wasn’t focused on everyone around me, though, because my heart was full as I looked down at my son, waiting to begin his Torah reading.
As I stood there, scenes from the last thirteen years flooded my mind. I expected we would be right here at this moment from the time he was very young. But it wasn’t a straightforward or easy path. The background to all of these years have been my steadfast conviction that regardless of the Down syndrome diagnosis, he is capable and intelligent, and should be treated as such.
He sat calmly, handsome in his new suit and hat, waiting to be called to the Torah, and I knew he wasn’t nervous at all. When he was called up, first by his older brothers singing together for him (Yaamod) and then by the gabbai, he confidently began reading.
I choked up, thinking of the years getting to this point.
Not just last year when I learned an approach to teaching Hebrew reading to children with reading delays and then taught him myself, because the approach in his school was too slow and he wouldn’t have been ready for his bar mitzva. At the same time I learned the Verbal Motor Learning approach for speech and took him for private sessions for a year to work on articulation. That was last year.
But there was so much more, year after year. Often I put in effort but didn’t follow through as I would have liked to, and wondered how much of a difference whatever I was doing made.
Afterward a number of women came over to me to tell me how beautifully he read. Several were surprised to learn he had leined the maftir rather than the parsha because of the concern that his speech wasn’t clear enough for the parsha, and told me they had no problem understanding his leining. A number of them shared that they were crying as they listened to him.
I had thought of this as our family celebration that we were sharing with the community, but as I listened to the women I realized that they saw it as a celebration for our entire community. Naturally as a mother my focus is on my child and what support to give him, but over Shabbos as I heard different feedback about Yirmi, I was able to zoom out and see a bigger picture.
I’m never going to make raising a child with a disability sound like rainbows and unicorns, because it’s not. Raising children is hard work, and if your child has an extra challenge, it’s even harder. Yirmi is a young man with a lot of personality and independence, and it has required – and continues to need – a lot of energy raising him.
It’s important for me to step back and recognize his accomplishments, to simply appreciate and enjoy him.
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I attended a retreat for mothers of children with Down syndrome the previous week, and it’s only been in the last year that I’ve understood what a parent of an older child with DS told me when Yirmi was two and a half. She told me, “You’re a very unusual special needs parent.” I asked her then why she said that, and I didn’t understand her answer. I told her I don’t do anything that any parent wouldn’t do.
But ten years later, I now see what she meant. I was very aware of this at the retreat and also at the year end school party for both of my sons with DS. It’s obvious I have a different attitude toward raising my children than most of them. Maybe the mothers who think like me have their kids integrated in regular schools or maybe it’s just the minority of parents in any given setting who will be more proactive.
What I recognized was that my expectations for my sons are different and my level of involvement in their lives is different. Expectations set the tone for what you do and how you do it.
At the end of the year IEP meeting for ds8 (who also has Down syndrome), after saying that he is doing well in an area that most of his classmates struggle with, his teacher commented that most of the mothers would be jealous of me. That raised my hackles a bit and I told her, “No one has any right to be jealous of me. I took responsibility for this and didn’t leave it to the teachers. I did what they didn’t want to do. That’s fine, but I don’t want to hear how lucky I am.”
Being actively involved with your child with special needs doesn’t mean that you’re going to get spectacular results. That’s not my goal and neither of my boys are poster children with impressive accomplishments. I don’t raise any of my children to be impressive, but to do what they can as best they can, without pressure. I do my part to be actively involved with supporting my children. So far that’s worked really well for us as a family with all of our children, and that’s the road I’ll continue to travel.
Avivah
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