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May 12, 2012

Stop thinking in terms of limitations and start thinking in terms of possibilities.
~Terry Josephson

It has been a year since I received the phone call that lifted the heaviest burden I have ever had to carry. It was the Friday before Mother’s Day last year when Mary’s neurologist called with the surprising results of her ATM gene test- it was negative, she did not have the degenerative, terminal disease that the doctors had been so certain of. There really is no way I can put into words what that moment felt like. To have such a certainty of despair lifted with one phone call, to be given all of our dreams back in one breathless moment…..

Since then, the doctors have continuously assured us that she will have further regression, that we will lose more skills, and will likely outlive Mary. It’s not an easy thing to hear, but lately it’s also been getting harder to believe. Sure, she has continued to show some small regressions here and there in that last few months, but she is showing more progress overall. She is isolating her finger again, looking at people and acknowledging them, engaging in life. She is doing so well in so many ways.

So, now that she has left one school, we are in search of a proper placement for preschool. Many professionals we have spoken to have suggested a particular place that specializes in autism. They appear to specialize in treating autism with the goal of mainstreaming the children. This just doesn’t sit right with me. I will admit, there are parts of me that would love to see Mary be able to attend the small Catholic school that my two older children attend, but at the same time, I know that would be incredibly difficult for her. Mainstreaming her should not be our goal. Making her happy and helping her to communicate in any way possible should be.

So once again, we turn back to the deaf community. Yesterday we toured the local School for the Deaf, where total communication is emphasized. They encourage spoken English along with American Sign Language, and some of their students even use the IPad as their primary means of communication, just as Mary has started to. It is where I wanted Mary to go in the first place, because they do employ all available methods of communication, not just limiting a child to spoken English, as had been done at her previous school. Mary has autism, but she is also moderately deaf. Her speech apraxia is, from my perspective, her biggest obstacle in terms of independence. Here is a school, not focused on autism, but experienced enough with it that they are more than prepared and capable of assisting Mary, that focuses on her biggest hurdle- communication. And they are already able to accommodate every avenue of communication available. All of the staff use ASL and spoken English, they are well-versed and practiced in using AAC and the IPad for communication.

She would be surrounded by a mix of children from around the state and even around the world, who, for the most part, are following a more “neurotypical” development. The classes are small and play-based instead of intense and therapy-driven. The children are encouraged to explore and discover. It is a warm and welcoming environment, where the other children already seemed eager to meet Mary, but easily gave her the space she requires to observe before meeting. One of the best parts is that, if she wants, she could stay at this school all the way through high school. We wouldn’t have to repeatedly uproot her in hopes of “mainstreaming” her. The campus is unbelievably beautiful. It seems like a really good fit. Finally.

One thing that struck me there was the sudden mix of emotions that I felt. As we toured the library, I noticed, with a familiar feeling of dread, that there were stairs leading up to the preschool section, but was quickly relieved to see, one small bookshelf away, an inviting ramp that a wheelchair or walker could easily navigate.

I still have to remind myself that Mary is no longer using a walker, and is even learning to navigate stairs. But there is still that fear in the back of my mind. The worry that she will lose this precious ability to walk independently, and will need that ramp to be there for her. I still look at every school with an eye for accessibility. I still worry.

Then, only ten minutes later, I found myself asking this question, “What are your college acceptance rates like?” How far we have come, that I would even let myself dream that far ahead for her.

I don’t know what lies ahead for our family, but for now, I will dare to dream. I will make plans for six months from now. I will dare to ask questions about what kind of life she can have when she is an adult. I will let my mind wander that far, if only for a moment or two.

But I will also make sure that we are enjoying today. Because today my girl is doing well. Today she is walking and exploring. Today she is praising the sun and the trees. Today she is perfect. And tomorrow is filled with possibilities.



When I look into the future, it’s so bright it burns my eyes.
~Oprah Winfrey






7 Comments leave one →
  1. May 13, 2012 1:01 pm

    My son too was initially diagnosed with a rare regressive metabolic disorder called Leigh’s disease which was later proven wrong. He was then diagnosed with autism. We tried mainstream schooling but it was not for him. He now attends a special school. I remember the mixed emotions I went through before making that decision. But now I wouldn’t change it. for the world. My son will be starting college next year. So yes we have come such a long way. Thank you so much for this post.

    • May 13, 2012 2:04 pm

      Thank you so much for stopping by. I am glad to hear that your son is doing so well. I never thought it would be this hard to pick a preschool! When my older two were diagnosed, we were encouraged to place them in highly structured, but “normal” classrooms, so they both go to our local Catholic school, which has been amazing for them. But for Mary, I keep getting told to go the other way, more specialized schools, etc. There’s a group of non-speaking autistic adults who advise parents (and everyone else) to always “presume competence.” With Mary, I can tell she is exceptionally smart, just the communication issue is holding her back, so I’m hoping that this school will be a good fit for her. It is very encouraging to hear that your son is heading off to college from a specialized school. Thanks!

      • May 13, 2012 2:15 pm

        You are so very welcome Erin. I know that there’s often a lot of negativity surrounding the choice to engage children with special schooling. It’s been my experience that the staff in these schools do “presume competence” they just hold more of an awareness of what it sometimes takes to help that competence come out. I wish you and Mary all the best.

  2. May 14, 2012 9:19 pm

    It is difficult to think of the future for your child. It is difficult to plan. Follow your inner voice and do what you feel is right, what is best. Mary is blessed to have you as a mom.

  3. May 15, 2012 4:44 pm

    While I can’t relate as a parent, I can appreciate your dreams for your daughter. Don’t be afraid to dream. Dreams do come true.

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