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This is the sermon I was asked to give in my church on Mother’s Day:

-I’m going to start by reading a story to you, about a mother who wanted to share the experience of having a special needs child:

“Welcome To Holland” by Emily Perl Kingsley (http://www.our-kids.org/Archives/Holland.html )

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting. After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

 “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And  you will meet a whole new group of people you would never have met. It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”  And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very significant loss.
               
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

With all due respect to Ms. Kingsley, when you find you have a special needs child,  you’re not just visiting, you’ve got to LIVE in Holland and learn to adjust.  Here’s what you learn: The “travel agency” (the professionals you work with) really do try to help, even if they can’t really understand what it’s like to have to live in Holland. They can come home, we can’t. And sometimes, the CEO of the travel agency (God) seems pretty far away. Your neighbors who go to Italy don’t know what Holland is like, either – and they want to share their experiences in Italy. Sometimes, though, it’s hard for them to understand our experiences in Holland. While sometimes we have misunderstandings and know that things get lost in translation, we also know that we’re all on a journey together and can share and learn from each other’s experiences, regardless of which country we visit.

“Holland” – let’s call it Aidanland from now on  – has its own language, customs, rules and laws. First of all, the citizens of Aidanland can be pretty touchy if you violate their customs and rules and they can’t communicate with you – meltdowns, hitting and kicking, biting are all common occurrences. However, once you learn to communicate, and the citizens of Aidanland learn to adjust to OUR customs, things get better – although “cultural misunderstandings” can and do continue to occur occasionally.

The language of this country is something very different from what you’re used to, as well. “ Aidanese” is a language of color and of similes and metaphors:  “I want the gray”  “What’s the gray, Aidan?” “Like Daddy takes pictures” “Oh, the camera!” Or, “I go guffing” “Aidan, what’s guffing?” “Like Donald” (After thinking about things and remembering a distant episode of Mickey Mouse Clubhouse…) “Oh, you mean GOLFING, like Donald did!” “Yeah, Mommy – guffing!” The syntax is different, too: It’s common to hear native Aidanese say, “You’re not important to…” to teach, to go to church, to work…what this really means is, “IT’S not important for you TO…”  do any of these things. “It’s important for you to stay with me!” (But until you understand this, it’s heck on your self-esteem!)

 Second, the customs of this country are different from what you might expect. In Aidanland, licking the walls and other objects, sticking things in your mouth, repeating phrases over and over like a broken record are normal. Using the potty is NOT a given, like it is in other places – nor is looking at people when you talk to them or when they talk to you. Eye contact and toilet training are things that citizens of Aidanland have to learn in order to survive in our world, but it’s not a given that it will happen on schedule. Amusement activities are different too: Lining up objects is fun – and Lord help anyone who messes them up! Bouncing uncontrollably, flapping arms, or spinning around without stopping are also considered high entertainment.  The “important things” in the culture include ceilings, lights and light poles, and “red balls” – things that most of us in other countries don’t pay attention to. Oh yeah…in Aidanland, only the citizens get to sing, unless it’s church songs. Anyone else gets, “You make my ears hurt!”

 Another mother of an autistic child wrote a reaction to the “Holland” piece, and added to our understanding of this culture: (“Schmolland” – http://www.autism-pdd.net/testdump/test16481.htm):           

“The hard thing about living in our country is dealing with people from other countries.  We try to assimilate ourselves and mimic their customs, but we aren’t always successful. It’s perfectly understandable that an 8-year old from our country would steal  a train from a toddler at the Thomas the Tank Engine Table at Barnes and Noble. But this is not clearly understandable or acceptable in other countries, and so we must drag our 8-year old out of the store kicking and screaming, all the customers looking on with stark pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people. …Other families who have special needs children are familiar and comforting to us, yet are still separate entities…we share enough in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. “My child eats paper. Yesterday he ate a whole video box.” “My daughter only eats four foods, all of them white.” “We finally had to lock up the VCR because my child was obsessed with the rewind button.” “My son wants to blow on everyone.” 

 And my favorite? Aidan has to ride the escalators at Macy’s for at least an hour before it’s ok to go enjoy the rest of our Saturday…because “riding the escalator is COOL, mommy!”

 We also ignore the whispered “diplomacies” of “ambassadors from other countries”: “why can’t she control that child?” “What’s wrong with her – what did she do wrong with him?” “I’d never let my kid behave like that.” And as much as we try to ignore, try to help others understand…these still hurt. We understand though…because we realize that we have done the same at times, and try to remember to be more compassionate when we feel this way.

 Although other special needs parents and parents in general have differences, we have a lot in common. We are a lot like the fruit growing on the branches, needing the love from God’s vine: 4Abide in me as I abide in you. Just as the branch cannot bear fruit by itself unless it abides in the vine, neither can you unless you abide in me. 5I am the vine, you are the branches. Those who abide in me and I in them bear much fruit, because apart from me you can do nothing.”

 We also learn that it’s not all hard, exhausting, or tough. There are moments when the true wonder shines through.  We never, ever take the “culture” for granted – we notice, appreciate, and celebrate every achievement and every reach toward growth.  Every developmental milestone that’s reached – no matter how late is cause for joy and gratitude. We learn the CEO of the Travel Agency – God – DOES care. He gives us friends, family, congregations, and groups to support us when we’re down, to help our children grown, and to be THERE when we need them. You – all of you – are the angels that make a difference to us and for us.

We notice the incredible, wonderful differences that not just set our children apart, but also show how God is working through THEM to help us:  For example, most kids play doctor, cowboy, fireman, teacher, etc….Aidan plays “pastor.” We come home from church, and have a procession in our living room, singing a hymn while Aidan gets on a box with a microphone and says, (literally) “Good Morning! Blah, blah, blah, blah, blah.” He then gets down, grabs the bread from the kitchen and comes to each of us saying, “The body of Christ given for you.” What a reminder of God’s love and presence in each of us!

And, every now and then, this child blows me away.  Many of you have probably noticed that Aidan takes communion – this came from him saying to me one day in the nursery, “Mommy, Body of Christ is for everyone.” When Pastor Michael talked to him, he said “Jesus loves…body of Christ is Jesus.” While we were out at the park the other day, Aidan came running up holding two sticks. He was very excited and said, “Look Mommy! I see Jesus!” Me, wondering what was going on, said, “Where, sweetie?”…He held the two sticks together to shape a cross and said, “Here Mommy! Jesus is everywhere!”  Pastor Aidan struck again! So, in the spirit of the lesson he had just shown me, we took those sticks, bound them together and made crosses as reminders of how much God does love us. 

The bottom line is that no matter how different we are, on the inside of the outside, God is in us, and around us and with us. “Pastor Aidan” has taught me so much – not just about living in Aidanland, but about living in our world, everyday. For whether we live in Italy, Holland, Aidanland or somewhere in between, when we show love to these children, to their parents, and to each other, we are living the word and doing love:  11… since God loved us so much, we also ought to love one another. 12No one has ever seen God; if we love one another, God lives in us, and his love is perfected in us. 13By this we know that we abide in him and he in us, because he has given us of his Spirit.  And in His name, Amen.

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I’ve been recently reading a wonderful book called, “Broken Open: How Difficult Times Can Help Us Grow” (Elizabeth Lesser; 2005). She is fairly eclectic in her view of spirituality, something I very much appreciate. Reading this book has come in conjunction with the suggestion that I engage in a deeper examination of who I want to be and where I want to go in my life.  I’ve also been thinking of the lessons I’ve learned by having a child with behavioral and developmental issues.

I’m going on 44 years old, and for the past five or six years, I’ve watched my life crumble around me. I worked for (and finally completed) a Ph.D. – an exercise in persistence and faith that, no matter what happened in my life, I could do this. I’ve watched my husband go from an open, emotionally expressive man to a rigid shell of who he used to be, through absorbing and emulating the militaristic, black-white culture of his workplace. I’ve watched my second son struggle with autism and with a behavior disorder. Aidan is a beautiful, sweet, precious little boy with some serious issues. I have to admit, I never thought I’d be changing diapers for a 5 year old. I also never thought I’d notice how fascinating lights, railroad crossings, stop signs, and “red balls” could be. (“Red balls” are the red and orange balls hung on power lines to warn planes.)

I’ve learned so much from this child, and have cracked open in the process. Aidan has tested my limits as no other person ever has – his tantrums have been violent and have left bruises. Many autistic children also have limited ability to express emotions and develop attachments. I am lucky – and so grateful and appreciative – every time I hear Aidan tell me he loves me, or every time he gives me a hug. When he snuggles up to me in bed, I thank whatever God there is for this little boy. I don’t take for granted that children will automatically learn to talk, to love, or to grow in the way we expect them to. Every day is a struggle, and every day is a miracle. One point of Lesser’s book is that blessings are hidden in the struggle, and grace in enduring the journey. Every day is a struggle, and every day is a miracle.

Aidan, age 5

Aidan, age 5

Aidan is relatively high-functioning as far as autism goes, and his issues are complicated by severe and prolonged temper tantrums as well as oppositional defiant disorder. For those of you who haven’t experienced ODD, imagine living with a person that contradicted you every time you made a statement, even when contradicting you is clearly not in his/her best interest. With Aidan, I can say “Wow the sky is a pretty blue today!” and he will say, “NO! Sky NOT blue, Mama! NO!” We are currently struggling with potty training – and his opposition to it has as much to do with the behavior disorder as it does with developmental issues. If I want him to do something, he refuses – it’s that simple.

Now, before anyone hands out advice on how to deal with this, I will let you know that my recently earned degree is in Counseling Psychology – I am trained to deal with this. As a result, our household has become very behavioral – it’s all about behavior and its consequences. Aidan is also receiving help through Early Head Start – another thing for which I’m eternally grateful – and through therapy at our local hospital. So, it’s not like he is not getting help for this. As a parent, I am so much better equipped to deal with “the system” because of my training, than are many parents – and my heart goes out to those who feel overwhelmed by the systems of care and by their children.

That said, Aidan has cracked me open to see life in a completely different way. Not only do I get see things in this world that many people never notice (like the “red balls”), but I also get to experience the joy of seeing the “everyday victories” that most parents are able to take for granted. Watching Aidan learn has reminded me that life doesn’t always come in neat, perfect little packages. Life is messy, love is hard, and the journey is tough.

I don’t know where all these experiences will lead, and I have the nagging feeling that I’m standing on the edge of a leap that will change my life. In the past, I had a lot of trouble accepting and living with ambiguity, and I still struggle with it. However, I’m at a point where I can accept that life is a process and that we don’t always know where that process is going. All I can do – with my son, with my husband, with my life – is remain open to and deal with what life hands me, in a way that is life-affirming. I may not be able to choose what happens to me – but I CAN choose how I react and what I do with it.

Reflections of Reflections…

Other Facets of the Mirror

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