Based in Israel, Chen and her husband Dudi are parents to their gorgeous and unique daughter, Neta, who is diagnosed with autism and extensive developmental delays. After completing two wonderful years at Beit Issie Shapiro’s Early Intervention Center, Neta is now in a Special Education Pre-School. Neta loves to swim in the pool, enjoys singing – and above all, loves swinging in the playground.

As featured on The New Normal: Blogging Disability

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As far back as I can remember, I have always loved and awaited my birthday. When August arrives, I am already full of expectation, even though I was born at the end of the month. So much so that when my siblings want to tease me, they say to me: “If August would only come already …” My birthday is my day: I spoil myself on that day and do things that I love. I enjoy the attention from those around me and feel very special.

Since my Neta was born, her birthday is a complex and tumultuous day for me. I want to celebrate and be happy in the way that I know birthdays to be, but I cannot help hurting. On this day, the chronological age that we “celebrate” and according to which we place candles on the cake confronts the developmental age that she has reached. From year to year, the gap between the two increases, and so does my pain. Every year, as we blow out the candles, I make the same wish for Neta, and when another year passes and the wish remains just that, I fear and wonder if it will ever come true. In the first year or two, we managed to slip the fact of her birthday under the radar relatively easily – after all, what do children understand at this age? When Neta turned three, after much consideration and uncertainty as to whether or not we should celebrate and whether or not she will understand, we gathered the family together and marked the day with mixed feelings.

About two months ago, the realization hit me that Neta’s fourth birthday was fast approaching, and again the thoughts arose: Does she understand the significance of this day? How do you celebrate for a little girl who prefers to be quiet, to keep to herself, and who is stressed and distanced by all the noise and commotion around her? It was clear to me that in order for Neta to enjoy a birthday party, we would have to make it appropriate for her.

To our great joy, we are blessed with an amazing family – supportive and tightly knit – that accept Neta with love and a wonderful level of sensitivity. We spend a great deal of time with the family, and feel most at home and comfortable around them. At family gatherings, the children play and go a bit wild, and Neta is always with us, the adults. As the years have passed, the children have grown, but as far as they are concerned, Neta has remained a baby. They don’t understand why she doesn’t speak and why she doesn’t want to play with them. They don’t understand why she still wears a diaper and why her mother feeds her with a spoon. When our bright nephew, who was born just two months before Neta, heard that Neta is also four years old, just like him, he couldn’t get it: “How can she be my age when she’s just a baby?”

And this is when the idea was born. This year, instead of hurting and examining what we had achieved on her fourth birthday, we would celebrate in a way that Neta deserved. I had three principles in mind for the celebration:

1. Neta must enjoy herself, and to do so, she needed to feel relaxed and safe.
2. Her guests would be her cousins and they must have a good time, just as children know how to do.
3. The cousins would be exposed to a Neta that they didn’t know and this would create an opportunity for future close relationships.

I thought to myself that the place where Neta feels most comfortable and safe is the swimming pool. For two and a half years now, Neta has been having hydrotherapy treatments at the pool at Beit Issie Shapiro and her progress there has been enormous. I thought how fantastic it would be if we were to expose Neta’s cousins to her strengths and abilities: that they could see that she is not a baby who doesn’t speak and is dependent on her parents, that they could see for themselves how independent she is in the water, how she swings with complete confidence on the rope in the pool, and how, with flippers and a floatation belt, she can swim and move forward on her own.

When I told Liraz, her speech therapist, about the idea that, till then, I had just fantasized about, she was immediately enthusiastic. With her encouragement, we got to work. It was clear to me that to make this celebration happen, we had to create the same environment for Neta, and to that end, we approached Hagar, her wonderful hydrotherapist, and got her involved. Hagar has a serenity about her and a calming presence that instills in Neta great confidence in the water. Liraz, who besides being an outstanding speech therapist is also a born hydrotherapist, would “officiate” the celebration.

In order for our adorable nephews to have a unique experience – one of not just enjoyment but of exposure and learning – we asked the parents (my and Dudi’s siblings) to conduct a preparatory activity at home. In this activity, the children would experience the difficulty of living without language and with limited communication. Following this, we asked the parents to discuss as openly as possible Neta’s difficulties and what makes her different, as well as how they can help her within the family to be better understood. Each child was asked to select a greeting that they wanted to wish Neta on her birthday; with these greetings, we created a communication board full of pictures and symbols.

The excitement mounted as we waited expectantly … and then the day arrived.

Wow!!! What an amazing day it was!!! Everyone arrived, very excited, and there was a real feeling of celebration. Each child got into the pool with a parent, and we celebrated Neta’s party with wonderful familial intimacy. The activity was familiar to Neta and allowed her to lead and even demonstrate to the other children what to do.

The children were very excited and cooperated fully, while the parents played an active part too. In the end, we made a circle in the water and each child presented Neta with a greeting and good wishes. It was clear to me that Neta understood. There is no doubt that she understood that the celebration was in her honor. Liraz taught the children and the parents birthday songs in sign language, and the children cooperated and, in addition to the party, received a lesson in accepting those who are different to themselves.

Neta was the star! She was happy the whole day and constantly smiled at everyone.

We returned home tired but happy. Our Neta was one year older. We had experienced with her a year of progress and development. Neta learns more with each passing day and surprises both us and the staff that treat her. When we blew out the candles on her cake, I made the same wish as always, and will continue until the wish comes true. Until then, we will continue to make every effort to understand you, Neta, even without words, and we will give you every opportunity to express yourself in any way you choose.

A very big “thank you” to Hagar and Liraz, who helped me fulfill the dream to celebrate the most wonderful birthday for Neta.

And an enormous “thank you” to our special family, whose absolute acceptance of and closeness to Neta enabled such an intimate, yet powerful, experience to take place.

And to my Netush – I wish for you to continue to develop and grow at your own pace.