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March 29, 2012

Yesterday we were told that we need to look for another school for Mary. She is 2 1/2 years old. She has been at this school for hearing and speech since August. This school that prides itself on getting deaf children to speak. But not mine.

I should have seen this coming. I suppose I shouldn’t be surprised at or disappointed in the school. When we started her there, I specifically asked that they be completely honest with me regarding her progress and potential for speech. I know time is short. I don’t want to waste any of it. There is a narrow window of opportunity for language development – any language. It is closing on us.

Her teacher cautioned me to be patient when we started Mary there. Later, she admitted to me that they were making virtually no progress in spoken language (you can read that story here). I should not have been surprised or upset to be sitting in that office yesterday, listening to the head of the school tell me they simply could not help my child – that she was just too disabled.

As I forced the lump back down in my throat and willed the tears to dry in my eyes, I remained determined that I would not give this woman the satisfaction of seeing my vulnerability. No, I remained calm, even though every fiber of my being wanted to stand and scream at them. How could they just give up on her? After less than 7 months, they were just going to turn their backs on us? After they were so adamant that I be patient?

I breathe deep and remind myself, this is a private school for deaf children. They had taken her on to see if they could help develop her spoken language. It is clear that they cannot, and though it pains me, I have to appreciate their honesty. It is time to move on.

I had already set my sights on the school for the deaf, just down the street. A school that focuses on total communication for deaf children, combining the spoken language with American Sign Language. She can’t go there until she turns three, 6 months from now. But her ASL has stalled. She has regained only one clumsy sign (“more”) in the year since she lost her expressive language. And if the doctor’s latest predictions are correct, we are about to lose the little hand skill and strength she has left. Her therapist warns me that if she can’t do the sign language, she won’t be able to keep up there either. She will have no language. We will likely be asked to leave that school as well.

It has always been difficult to look at other children Mary’s age and to see how different they are. Especially now. The other children her age run and climb. They laugh and smile. They speak to their parents and play with their siblings and with each other. They are so much more engaged in life than she is. She floats through life, absorbed in her own world, in her own thoughts. I want so badly to have just a glimpse of what she is thinking.

An insidious thought has been creeping into my mind lately. If I were to lose Mary today, would the world be any different? Would anyone really notice she was gone? She is so young. She has no real friends, no real social relationships. Would anyone really care? Would anyone remember her for who she is in ten years, or would they just remember that poor family that lost their baby? Would that change if she lived into adulthood? The autism, the deafness, the apraxia- they are all so isolating. Will she ever find her village?

There is a banner in the front of my son’s school, welcoming back a classmate who just returned from an extended absence due to an illness. It is signed by every child in the school. It is beautiful. The simple idea that this child was missed during his absence and welcomed back joyously by the entire school causes my heart to leap for his family. But it stings when I look down from that banner to my own baby girl humming on the hallway floor waiting to pick up her sister from preschool there. It seems unlikely to me that she will ever know that kind of support and acceptance from a school. Especially now, when it seems like she will be bounced around from one specialized facility to the next, never really cementing the kind of comeradry that other school children share. The clear difference is that this, admittedly older, child can speak, play and form friendships. He can express to his parents, teachers and friends, what he is thinking. He can communicate with and therefore connect with other people. My child cannot. And so she and we remain isolated.

We are alone. With no diagnosis, no school, no village, and no clear path, we journey alone.

At the meeting a suggestion is made. We should look into a program at the world- renowned facility for severely disabled children up the street (it is not at all lost on us how lucky we are to have these amazing options so geographically close together.). I pause, thinking of the children that I have seen at that school. Many are severely brain damaged or have major rehabilitation to go through for things like spinal cord injuries. This doesn’t sound like my daughter. But the nice lady behind the desk and Mary’s therapist gently, but enthusiastically encourage me- this could be a fit. These are the people that could really help my girl. They have an autism school, as well as significant experience in helping children with neurological issues. They have the training, equipment and expertise to help her master the communication program she has been using on her iPad. They may be able to stay one step ahead of her regressions. Yes, this, they assure me, is the place for her.

A tour is being set up. I want this to work for her. She is so intelligent. She has shown us that she understands what we are saying to her. She understands colors and shapes and other simple facts that “typical” two year olds should know. She is a problem solver. She could teach us so much. She deserves the opportunity to share her thoughts with us. We are setting off on yet another new path, in search of our daughter, who I hold tight in my arms.

When one door of happiness closes, another opens,
but often we look so long at the closed door
that we do not see the one that has been opened for us.
– Helen Keller


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