Last week we celebrated Yirmi’s tenth birthday. It doesn’t seem like a decade ago that we got the surprise diagnosis that our newborn son had Trisomy 21. I suppose time always seems to pass more swiftly than you expect it to.

I’ve learned quite a bit along the way, but the biggest ongoing lessons have been: believe in yourself – you love and care about your child more than anyone and you are capable; believe in your child – you know him and his potential more than anyone; and keep believing in him even when externally it looks and feels discouraging.

As I just wrote that and looked at it, I thought to myself, well, what was so different about that than any child? And the answer is, nothing. But these have been my biggest takeaways during this last decade, and continue to be what I hold in the forefront on my mind.

I’ve shared before that I’ve often felt inadequate, wishing I had the resources to do more for him. I’ve had to put aside thoughts of what other mothers do to support their children and not compare myself.

In spite of what I haven’t done and continue not to do, I have an intelligent and capable son who happens to have T21. He’s doing great and continues to develop and mature. And I’m maturing, too, continually becoming more appreciative of things in the present moment, as they are right now, without holding out for perfection.

I really don’t believe in perfection, but when it came to Yirmi I wanted so much to be able to give him the support I felt he deserved that would enable him to actualize his potential. While that is a noble intention and came from a place mostly of love (but let’s be honest, there’s always ego there), realistically I have to wonder how many human beings on the planet have fully realized their elusive potential.

I had an internal struggle after having Yirmi, since my educational philosophy is based on giving kids the space and time to step into who they want to be and want they want to do. I’m not a fan of pushing kids much. But the proactive moms of kids with T21 whom I most identified with, do a tremendous amount to actively support their children. The accomplishments of their children looked so compelling, and I wanted those for my child, too.

I can feel guilty about it or not, but I am who I am. I’m a fantastic mediator, I’m a good role model of life-long learning, and I provide a lot of hands-on, skill-based learning opportunities. That comes easily to me; I don’t have to read books on how to do it or schedule it in to my day, or work hard to remember I should be doing that. I read quality books to my children, use good vocabulary when speaking to them, and their comprehension and verbal expression reflects that.

Other things don’t come naturally to me…activities that don’t come naturally to me are the things I end up feeling inadequate about. I felt they should be done whether I found them easy to do or not, since my child deserved to have this kind of support.

It’s so, so easy to slip into focusing on what you’re not doing. My challenge has been to let go of that ‘not enough’ voice and actively appreciate where we are now: “My kids are doing great, I’m enough and let’s just keep doing what we’re doing.”

I’ve also found peace of mind about having him in a special needs school. Letting go of my ideal of inclusive learning wasn’t easy. While the school he attends is a state of the art school and I very much appreciate all that they do and how they do it, I felt I failed by not continuing to pursue inclusive school environments. Why not? Because it felt like too much pushing, too much advocating, too much interfacing and educating teachers and administrators. I questioned if it was fair to him to put him in a school system where he was likely to be at the bottom of the class, no matter how hard he tried. I’ve never put my children in high pressure environments, since I don’t believe that’s beneficial developmentally. I wouldn’t do it to my neurotypical kids, so why was it desirable in the name of inclusion to do it to my sensitive, open-hearted child with T21?

I can sum up the last decade by saying, I’ve had and continue to have opportunities to practice appreciating who I am and putting the focus on that. The more that I’ve stayed true to myself, to what I believe- even if I disappoint those who would prefer I promote a different message or take different actions – the more at rest I feel within myself.

We seek to create an atmosphere at home in which our children can find that critical ‘rest’ that is so necessary for development, a place of not having to prove, of being safe, of knowing he is just right the way he is – and this is the same kind of space we should be creating for ourselves as parents.

You can see that most of the last ten years wasn’t about Yirmi – it was about me sifting through lots of information and perspectives, and making room for my own beliefs. It was about letting go of frustrations I sometimes felt when he wasn’t hitting milestones at a pace I would have liked, and replacing it with genuine appreciation and acceptance for his personal timeline. It’s been hugely about accepting and appreciating my own self.

Raising children isn’t for wimps. Raising kids with special needs has the potential to make you look even more closely and deeply at yourself. While I can look at what others do and genuinely appreciate their efforts and be glad for them, I no longer participate in T21 groups that I had considered a source of inspiration, because the inspiration I received paled next to the inadequacy I was left with. Recognizing something can be valuable to someone else but doesn’t serve me at this time, and being willing to let go of it is an important lesson.

Someone asked me today, is it really much harder to raise kids with T21? I paused, because I don’t want to sugarcoat and I don’t want to exaggerate.

Two and a half years ago I went on a two day trip sponsored by the school ds5 was in at the time, and it was such a positive experience for me to be in a room with other parents of children with a diagnosis, and I hope I’ll have another opportunity in the future to participate in a similar kind of getaway. It was a relief to be able to mention an area of challenge, without feeling someone would judge me as complaining or judge my child for being limited.

So yes, there are things that are harder or different, things that have required me to be more patient, to work harder, to do more. Has it helped me grow as a person? I hope so.

I feel the most accurate answer to the above question is, “It’s mostly the same as raising any child, with some differences.”

A teaching assistant of Yirmi’s told me a couple of years ago, ‘There’s nothing wrong with Yirmi and his developmental pace. The problem is the world expects it to be different.” There’s a deep, deep truth to that statement.

Avivah