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Priscilla Gilman on Embracing the Strengths of a Special Needs Child

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Priscilla Gilman is a human archaeologist. She digs for the beauty, joy and gifts of the 'different' child and finds them on the top layer of fertile ground. As an English professor who is passionate about literature, most specifically the poetry of William Wordsworth, she has combined this love with the struggles, disappointment, joy and beauty of parenting the unexpected type of child, into a most uniquely and poignantly written memoir, The Anti-Romantic Child: A Story of Unexpected Joy.

"This is not about a label or a diagnosis. It's about both unfolding and preserving the mystery of his self."

This is the story of a mom who selflessly unfolds and completely tunes in to the mystery of her son, Benjamin.

1. What personal qualities have helped you carry on and move in a positive direction?

The most important quality is that I am a genuinely very positive person. I have an outlook of optimism and hope with Benj, not meaning I want him to be cured or fixed, because I don't think there's anything wrong with him. But from the start, it was "what can I do to help his life be more fulfilling and to help him become more fully himself?" I always saw all the therapies and special support not as a race to fix or cure him, not as tools in an arsenal as if I was fighting a battle against autism, but rather, "I want to get to know my son better, I want to understand him so I can love him better and be a better mother to him." And so when we would do the therapy sessions, I would try to look at them as opportunities to learn more about him and to help him. Not to help him change, but to help him become more comfortable with things he loved to do. For instance, sound sensitivity -- helping him overcome those things so he could enjoy music and go to concerts because he loves music. Not so he can become normal, whatever that is, but so these obstacles to his engagement with things he absolutely likes, would be removed.

I've always had this positive, optimistic approach to life since I was little, but not in a denying way. I was always the little kid who cheered everybody up when they were sad. I was known for that. In a way, I think I was the right parent for Benj because he has a lot of anxiety. And I'm gifted at helping people with anxiety. And, I guess, helping myself with anxiety.

Those positive qualities pre-existed Ben. But he helped me develop qualities that have helped me along the way with future challenges with him. He has helped me put things in perspective so that I don't get ruffled by little things that might have bothered me before. He's made me much more patient; he's helped me to become much more open-minded and tolerant of all kinds of difference, whatever form that takes and he's helped me with being in the moment and not worrying and obsessing about the future- looking at each day, each situation and each challenge for what it is. Those are great gifts that he's given me.

2. Did you go through a period of self-pity? If so, what helped lift you out?

I say this in all honesty -- I never did; I just didn't. I think that part of the reason is that I had lost my mother-in-law who I deeply loved. When I met her she had stage four breast cancer, so we knew she was not going to be cured. We got married and three weeks after our wedding, we found out the cancer had spread to her brain. We took a year off from graduate school, and with his brothers, we took care of her at home with hospice for a year. That was something that profoundly changed me before I had Benjamin.

People look around -- they have a child with autism or somebody with cancer and they say, "why me?" I would always think, "why not me? There are so many people in this world suffering, there are so many people confronting huge challenges; I just never thought, 'why is this happening to me.'

The other reason is that I was instantly focused on not wasting time wallowing in self-pity. I think it's a very understandable reaction and I don't judge people who have it at all. But I didn't feel that way. I thought, "this is my challenge, my thing." There's never been anyone with a developmental disability, even a learning disability, in either of our families. So this is completely new territory for us. I was resolved to learn as much as I possibly could and I was going to focus on this little child in front of me and not waste any time with 'what if's' or my needs.

3. You have such clarity about yourself and your personal insights are so clear. How did you develop this?

That's part of the result of writing a memoir. If you want to write an honest memoir, you discover what's true as you're writing it. It's not like you know all the answers and sit down and write it. You figure it out. It also ties in to Benjy -- just as I want to know him and I want to help him be as happy and fulfilled as he can be, I feel the same way about myself. It's very important to be able to look at ourselves and say, "these are my strengths, these are my challenges, these are my weaknesses." Because everybody has challenges and weaknesses. The more honest I can be about my limitations as well as my strengths, the happier and more peaceful I can be.

4. Was there a specific moment, thought or epiphany that helped guide you to a better place mentally and psychologically, or did it evolve?

There wasn't really one specific thing. However I would say I didn't have a very long grieving period. I focused immediately on helping Benjamin. The moment that made things easier overall was about three years after Benjamin was first evaluated. When he was evaluated in 2002, he was diagnosed with severe gross motor delays, moderate fine motor delays, a host of sensory sensitivities, a language disorder (not language delays -- he actually tested super high on certain things and super low on others). He was not given an autism diagnosis. I think he would be today. Ten years ago, there were different criteria.

For the first few years he was in a mainstream pre-school. It was hard and we had to do a lot of work with the school. My ex-husband was very determined to get Ben into a mainstream elementary school. It was wrenching and painful at the time when we had him evaluated as we were applying to first grade and we found out his issues were really profound. Accepting, completely accepting that Ben did not have a condition that he was going to grow out of and he did not have a condition that could be cured or fixed or that I wanted to be cured or fixed. Accepting that he had a life-long condition with a lot of wonderful strengths that came along with it as well as weaknesses, and not racing to get him to be normal but embracing who he was, that's the moment where I never felt the same level of stress or worry or anything negative again. That was two years after he was first evaluated. The third year was very roller coaster-like. I don't feel like I'm on a roller coaster anymore. If I am it's a much easier one, like a baby roller coaster. I don't feel my stomach dropping out. I don't lie awake worrying about him; I don't cry in my pillow at night. He's in a special school, he's not mainstreamed. I'm not concerned with getting him mainstreamed; I'm concerned with him being in the best environment for him.

5. What are your day-to-day coping skills that keep you afloat?

Meditation is crucial for me. That's something I started doing in graduate school. Twenty minutes of meditation is like a two hour nap. It helps me be more time efficient. People say, "oh I don't have enough time in my day to meditate." But when I meditate I find I get things done in half the time than I would have.

The other thing is getting enough sleep. I need a lot of sleep. If I don't, I get sick. I will leave a social event early so I can get enough sleep.

6. What thoughts propel you forward?

Not thinking too far down the line. Not thinking about what's going to propel me forward but taking it one season, one school year at a time. And not making assumptions about what Benj is going to able to do and what he's not going to do, three years down the line.

I don't worry or obsess about his future. I try not to put too much stock in certain milestones, like is he going to be able to live independently. I don't know the answer to that. And frankly it doesn't really matter to me. If he can [live independently], wonderful; if he can't, it doesn't mean his life is lesser. If it's the right thing for him, the best thing, then that's what counts. I think Benj will go to college because he's very academically strong and he loves school and learning. For some kids on the spectrum, they're not going to go to college and there's nothing wrong with that. I don't want to get lost in one vision of what a valuable life is.

7. What advice would you offer someone going through this - being a parent of a special needs child?

My advice would be to not compare your child to anybody else's child or your parenting situation to others. Focus on your individual child. Look for their strengths, because every child has them. Use their strengths to help with the challenges. One thing we did with Benj -- we used his strength of reading to help him connect socially. We need to look for those gifts. We need to focus on their gifts rather than only on the negatives.

Take time for yourself. Don't let your life become 24/7 worrying and obsessing about the child because that's really easy to do. I think I did do that for the first couple of years, which was not great for my marriage, which would've broken up anyway. You can't have a good marriage if you're totally focused on the child's needs. You'll be a better parent if you take care of yourself. I know that's really hard. I'm learning as I get older that it's not self-indulgent to go in a room and meditate. Or to say I'm not going to the party even though my friend will be disappointed, because I need to get sleep. We can bring more to our children if we have more energy and peacefulness; if we are more centered.

Also, knowing that it will get easier. I subtitled my book A Story of Unexpected Joy. I deliberately used that word, unexpected. I got the unexpected; I didn't get the kid I was anticipating; I didn't get the family life I was expecting. In fact, I've learned to see the unexpected as something that brings blessings with it. There's some deep joy in allowing myself to be surprised by my experience. Everyday there's something weird and magical that happens with my children if I look at it the right way. Joy is not the same thing as happiness. There's a quote by Anne Morrow Lindbergh -- "Happiness is dependent on circumstances but joy can spring from the cliffs of despair." It doesn't mean our life isn't very difficult and challenging but there's still a deep sense of something joyful in parenting our children. And they help us. It sounds like a cliché but it's true -- Benjamin has made me a much better person. He's been my greatest teacher.

"Oh dearest , dearest boy! my heart

For better lore would seldom yearn,

Could I but teach the hundredth part

Of what from thee I learn." (Wordsworth, 'Anecdote for Fathers')

Seek consolation and advice and support not just in psychology and education but in great literature. Literature was my solace. Humanities and literature are not frivolous entertainment; they can help us in deep ways.