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If anyone had told me 6 years ago that I’d still be changing diapers on a nearly 6-year old, I have to admit I would have been scared spitless and wondering what the hades I’d gotten myself into. And yet, here we are with Aidan in kindergarten and still wearing pull-ups because he either can’t or won’t use the toilet.

I remember when he was 3 and 4, people would say to me, “Don’t worry. He won’t go to school in diapers.” Well…again, here we are. Now, I’m just hoping he won’t go to high school in pullups.

The thing with Aidan is that, in terms of the autism, he’s pretty high functioning. He talks, expresses emotion, interacts socially (to some extent), and is generally a sweet little kid. Here’s where the other side, the ODD, comes in though. ODD is short for Oppositional Defiant Disorder, and it roughly boils down to where a child will say no and be oppositional simply for the sake of being oppostional. If you say the sky is blue, this child will say it’s purple with yellow polka-dots until he’s screaming bloody murder and insisting it’s purple with yellow polka-dots. This all occurs without me arguing with him. With some things, like the color of the sky, it’s really no big deal. But, with some things, it IS a big deal – like with potty training.

When I said “can’t or won’t” I was referring to the ODD. Aidan CAN use the potty to urinate, and generally does except when he’s in an ornery mood. Then, he’ll go in his pullup purposefully if I ask him to use the potty. Using the potty is a battle, no matter what I try, because of the autism-ODD combination.

Now let me explain that I have a Ph.D. in counseling psychology. I KNOW what to do, and we have a very behavioral household. There are rewards for trying, and better rewards for doing. For oppositional behavior, there are set consequences – losing privileges and time-outs along with losing whatever activity he was engaging in during the oppositional period. (Losing it for a time period, not permanently depending on what it is – I don’t want to punish my daughter for her brother’s behavior.) The long and short of it is that I know what to do – and it’s *still* frustrating.

ODD is a frustrating disorder to say the least. Sometimes he’ll just say no and/or refuse to do something for reasons I can’t begin to understand. Sometimes, it’s even for things he enjoys and wants to do. I don’t think even HE understands it sometimes. Stubborn is an understatement – this kid sometimes gets in his own way. Adding the autism into the mix complicates things because he has trouble relating to people anyway. I’ve been asked how much is ODD and how much is autism, and I honestly don’t know except to say I’ve seen both. ODD doesn’t account for his fascination with automatic doors, elevators, transformers (the ones on the power poles, not the toys), and lights or his language and physical delays. Autism doesn’t account for the oppositional behavior and the purposeful defiance that I see.

In the end, I think it burns us both out. I see him get so frustrated and upset and I WANT to help him. My love for this child, in spite of the ODD, is unending and I wish I could do more to help make things a little easier for him. And yet, I get burned out and frustrated. When I’ve changed the disgusting, feces-laden pullup for the 8th or 9th time in a day, there are times when I just want to scream. When I have to deal with “no” and “I won’t” and “You can’t tell me what to do” or him ignoring requests repeatedly, I want to run away. I get angry, frustrated and exhausted.

And yet, we muddle on. Although to some extent it’s a battle of wills, it’s also the story of a son who loves his mother and family and a mother who loves her son with all her heart. Will he get out of pullups? I sincerely hope so. I’m not going to say “by high school” or by anything anymore – my sense is that it just puts pressure on both of us. We already try to make potty training less a matter of control and more a matter of pride for him, and I work hard NOT to get into fights with him over it. The pressure of “by high school” or by anything is more on me – and I have to let go and let him do this on Aidan-time. I’m hoping the peer pressure of being in school will help and so far it seems to have had a positive effect

So where do I go from here? I keep loving this special child that tests my patience every day. I enjoy and appreciate the smiles and the happiness that I’m so lucky to have, given his autism. I love the hugs and imagination, and even the lights, elevators, escalators, and “button doors.” I see things I wouldn’t ordinarily pay attention to, like the color and shape of the transformers on the power poles and the shape of the lights and buttons in elevators.

And, I keep trying. And trying. And trying, and trying. I have faith that he can eventually do this, and that I will survive it. And I never, never, ever give up.

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Aidan and Becca, June 2009, Loveland CO

Aidan and Becca, June 2009, Loveland CO

After about a week and a half of weird, volatile weather, we finally have a typical sunny Colorado day. The temperature is 77 – just about perfect for being outside, and the around here to be able to just relax and enjoy the day; usually someone has to be somewhere and we’re rushing here and running there. Today is a wonderful exception to that rule.

We started our day by going to the park and playground. Loveland has some great parks and one of our favorites is Dwayne Webster Veteran’s Park, on Lake Loveland. The munchkins were able to run around and climb, swing, and slide to their hearts’ content, and I grabbed a table in one of the shelters and worked on some art ideas and wrote. There was a group of older adults from an assisted living facility having a picnic in the same shelter, too – I again realized how much I enjoy talking to people and hearing their stories. Some of the people obviously had Alzheimer’s or another sort of dementia, but it was so nice to talk about our kids, show pictures and listen. Two gentlemen were veterans of World War II, and we shared stories – my father was also a veteran of that war. The ladies were thrilled with Aidan and Rebecca, and my little princess-diva was captivated by all the attention. Aidan, as usual, simply took it in stride and looked for red balls.

After playing, we rediscovered the joy of Dairy Queen…is there anything more indicative of summer than seeing children eating ice-cream cones? I love seeing their little faces covered with ice-cream as they dive in and not just eat, but savor the cone with all their senses. Aidan especially loves to do this – he’ll talk about the taste and color of the ice-cream, how the cone has squares on it, and how the paper around the cone sticks to it and is blue. We enjoy these on the patio tables by the street, and he comments on the cars and trucks going by, and wonders where the nearest red balls are. Becca, meanwhile, just sticks her face in the cone and laps it up doggy-style.

Now home, we are outside and I’m on the porch writing while they splash in the kiddy-pool on the front courtyard. We live in a townhouse, with no yard, and I really miss having the expanse of green on which to play and run. Anyway, we have the kiddy pool set up on the flagstones, and they splash around having a good ol’ time. The latest bit of fun is filling cups with rocks and pouring water over them – making fountains. That’s Aidan’s idea, and it’s so nice to see him be a normal kid. (Except when he has to line up the rocks on the porch and freaks out when anyone touches them … sigh.) Even so, he’s engaging and playing and enjoying, and that’s wonderful to see. Little bit by little bit, we are unlocking Aidan, and he’s coming out more and more into the wider world we share.

The Tooth Fairy visited our house recently too – my little boy is growing up, and it’s bittersweet. The sweet part – as you might guess – is that he’s FINALLY potty-training. Big boy pants have been popular around here lately! He wants a guitar when he’s a big boy – and we’ve agreed. He thinks that he’ll get to be on “Jonas” when he gets it, and that Becca can be Hannah Montana. Who says autistic kids are completely in their own world? Higher functioning kiddos like Aidan very definitely notice and interpret the wider world. Getting them to stay there and interact with it is the challenge, and day by day, we’re still unlocking Aidan.

Summer…well, life is good, popsicles are sweet and cold, and the water from the hose is refreshing. Slides are slick, swings rush, and green grass grows, as do our kids – every day.

There are some bright spots today – Aidan, my little 5-year old boy who is autistic, has decided that he wants to wear big-boy pants!!!! Hallelujah, he may not go to school in pull-ups. I’ve been changing his diapers for 5 1/2 years, and I am SO ready to be done with that. I think he got jealous of his 3-year old sister, which is FINE by me. 🙂 That, and the “tooth fairy” left a note for him telling him he had to be a big boy and wear big boy pants, because he’s growing up. ;p

The other bright spot comes from my daughter Rebecca – I’ve never seen a child narrate her life to music the way this little girl does. Everything is something to sing about – “I going to water, water plants…” to “I go to the pot-tay, pot-tay, pot-tay…” to (at the top of her little lungs) “Mommy’s driving, Mommy’s driving cossetrate!” Seeing her sing reminds me of myself at her age…I loved to sing. My mother used to tell me “Laura, you couldn’t carry a tune in a bucket.” Well, Becca doesn’t either…and I LOVE to hear her singing. It’s the most beautiful sound in the world to me, next to hearing my kidlets laugh – it shows she’s so happy with her world, that she just breaks out in song.

How much better does it get? 🙂

Aidan and Becca playing "hide from Mommy" at the park - June 2009

My son, Aidan, is autistic. We began to suspect that something was wrong when Aidan didn’t start to walk on time, like other kids. He eventually did walk, at 16 months, and our doctors told us, “Don’t worry, he’s fine.” Now to any other parent, that might sound reassuring – but to me it was extremely frustrating, because I KNEW something wasn’t right. I have the advantage of doctoral training in counseling psychology; one of the many things we learn is how to recognize, assess, and treat developmental disorders in children. And yes, autism is one of those disorders. So, I had an “in” when I started recognizing symptoms.

Aidan is a little different in that he never really regressed, as many children with autism do. Aidan simply stopped. At about 18 months, he had tubes put in his ears for chronic ear infections – we had hoped that he would start catching up when he stopped being sick so much of the time. His second birthday came and went, and he was still delayed. He had trouble eating independently, and didn’t like to be hugged as much as I would have liked to hug him…so, although there were some “red flags,” they weren’t flying high enough to really warrant a lot of attention. Still, at his checkups, I brought up the possibility of autism with our family doctor. Her advice was to “wait and see.”

One thing I should tell you is that I have a really, REALLY good working relationship with my family doctor. She is an incredible, amazing woman that I trust. More importantly, she listened to me and considered my concerns. Again, though – I had an “in” because of my training, and I’m sure that helped.

Aidan’s sister was born a few months after his second birthday, and Aidan didn’t react to her at all in the way you’d expect a toddler to react to a new intruder. He simply didn’t care and actually acted as though she simply didn’t exist. Unlike most toddlers, he wasn’t curious and he wasn’t jealous. He simply…was. Again, I was concerned – after all, I knew what to look for.

Aidan’s 3rd birthday came and went, and he was pretty clearly not meeting the developmental milestones. I’d been keeping track of these since I’d first noticed difficulties early on – and, as I mentioned earlier, he simply “stopped.” He wa stuck at about 2 to 2 1/2 years old. Our doctor listened to my concerns, and again we give it a few more months just to wait and see. Ok…so we did.

At three and half years, she saw him again – she’d wanted to assess his development specificially withing the few months between visits to see if there were any changes. There weren’t…he as still “stuck” in the two year old phase.

Now if any you know, have been around, or have children at this age, you KNOW what fun I’m talking about. Learning the power of “no” is huge at this age – now imagine getting stuck there, and dealing with it for over two and half years. Potty training – the same. Stuck at early two.

After this visit, our doctor decided that it would be a good thing to run a complete evaluation – ironically enough, she recommended my training clinic as the best place to do this. I KNEW what the outcome of the evaluation would be – after all, I’d been tracking symptoms and such for 2 1/2 years. So, off we went to CSU for the evaluation. I remember telling therapist (who again ironically enough was in the same exact position I’d been in three years before) that I thought Aidan had autism and oppositional defiance disorder (ODD; essentially disobeying for the sheer idea of disobeying and argumentation.) She said, “Well, let’s do the tests and we’ll see.”

Guess what? Amazingly enough…he was diagnosed with mild-moderate autism and oppositional defiance disorder. Here’s the thing – even when you’re prepared, even when you know what’s coming – hearing it is a shock. No parent ever wants to hear that there is something wrong with their child. I’d been through this before when my oldest was diagnosed with ADHD. I thought I was prepared.

And on the way home, with Aidan babbling in the back seat of the care, I cried. Partially out of relief – here was the evidence for what I’d known for years – and partially out of a profound grief. There was something very wrong with my baby.

From this point, we entered the world of “services” and “therapy.” I have to say that I’m eternally grateful to the local hospital and therapists – their work in speech and occupational therapy worked wonders. It’s expensive and I’m also glad we had insurance that covered it. AND, I thought about what life would be like if we didn’t have these advantages.

Today, Aidan speaks relatively close to his age group – he’s about 1 year behind. His motor coordination is better, and he interacts with people much more often and appropriately. I thank God every day for that. He has improved immensely, also in part due to the wonderful Head Start program – he had a wonderful classroom staff and was thrilled to be a “big kid” and go to school. He hugs, kisses, shows affection, interacts and even initiates play with other kids – all of these are miracles I’ll never take for granted again.

There are things about Aidan, though, that are noticeably different. He tends to speak in a monotone that sounds intense or pressured – there isn’t much emotion or inflection in his words. He looks a little different too – there is just something about him that seems a little “off.” He’s fascinated with things no other child I know of has ever even noticed: power poles and lines, “red balls,” train tracks (not the trains – the tracks) and signs. One more thing – heaven help me…I’m STILL changing diapers. (Changing poopy diapers for a 5 1/2 year old is NOT fun, either!)

His little sister speaks more clearly and in a more complex manner than he does, and she’s potty-trained now. She’s teaching him some things with language, interacting, and normal pre-school stuff that he needs and can really only get by interacting. He’ll be in a regular kindergarten next year, and I’m worried for him.

We all know how kids treat other kids who are different and how early it starts. My prayer for the other children and for Aidan is that, somehow, they can overcome the differences and help each other.

Amazing how true this still is…still working in the nursery, Laundry Mountain has been repeatedly torn down and rebuilt – but is still there, and I’m still wanting more adventure in my life. The more things change, the more they stay the same 🙂

Feelin’ out o’ sorts…
Category: Goals, Plans, Hopes

Wow…what a day. I work in our church nursery, where I am a temporary “cuddle mama” to all the kids whose parents drop them off. It was nuts today, and I was exhausted and cranky by the end of the day. There are some days where I look at my life and think, “is this all there is?” Don’t get me wrong – I love my kids, with all my heart, and I wouldn’t want to be with anyone other than my husband. There are days, though, where the sheer ordinariness and predictability of my life gets to me.

I want to have adventure – I want to hop on a plane and fly to some place exotic and new…Marrakesh, Bombay, London, Cairo, Rio…anywhere so long as it’s not ordinary-somewhere-in-Colorado. I want to sit on the beach and sip Mai-Tais, go beachcombing and drawing/painting…explore little-known alleys of far-off bazaars…sail on a glass-bottom boat or learn to snorkel or scuba dive (do they even let large women do that?)

I’ve been reading Danny Gregory’s “Everyday Matters,” and I feel somewhat guilty about feeling this way. After all, my world could be turned upside down so easily, as was his. Reading this, though, did get me starting to notice all the little things that make my life unique – Laundry Mountain, The Kitchen Slough, and the Dirt-eating Carpet Monster…Aidan running around the house yelling, “Red Balls, Red Balls!” (something for another entry…:), Rebecca calling, “Mam! MAMMAM!”…There ARE many things to be grateful for.

Still…I wish I had more time for my art, and for my knitting. My UFO, the evil cardigan, weighs more mentally than it ever will physically, and I have so many projects I WANT to do…like make up my collage “Thank you” notes, work on David’s project (my FIL), etc., etc. And they all seem to weigh more heavily each day, as does the uncleaned house, the unwashed clothes, and unwritten notes. (And so what am I doing? Blogging…;P ) I guess I need to reconcile that the choices I make don’t always line up with what I think I want…sometimes life just takes over and I go on autopilot. And, at the rate I’m going, I’ll be lucky if Laundry Mountain doesn’t petrify soon…Move over Petrified Forest, make room for the petrified Socks of Doom…

Bliss is knowing that your ex-husband did the right thing and paid the last of the owed child-support even though he threatened not to, thus saving me from having to go through the added hassle and expense of an enforcement order.

Bliss is also having your autistic 5-year old start to figure out that it really IS a good thing to use the potty, thus saving Mama from many, many stinky moments.

Bliss is having your husband take over kiddo-duty so Mama can actually write a little on her blog!!

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.

Reflections of Reflections…

Other Facets of the Mirror