Sunday, January 17, 2010

Welcome to Holland

WELCOME TO HOLLAND by Emily Perl Kingsley.

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 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.

Tuesday, September 15, 2009

The Many Blessings of Autism

When I tell people that Jaxon has autism I am confused by their reaction. I don't want others to feel sorry for us. I would not have my boy any other way. He is amazing! The strengths autism brings way out number the challenges. So here is your invitation to celebrate with us what an amazing boy Jax is and all the ways he, and autism, have blessed our lives!

  • Holds onto his faith and belief in Christ without question or hesitation. Blessing.
  • Very, very honest and loyal. Blessing.
  • He is less aware of (and thus less concerned about) the judgments of others. Peer pressure is a non-issue. This is not a big deal now but the teenage years will be here before we know it. Blessing.
  • He has an outstanding memory. Blessing.
  • Complies and follows the rules. Blessing.
  • Intelligent. He will read whatever is put in front of him and is showing advanced math skills. Blessing.
  • Charming in his innocence. Blessing.
  • He is very genuine and kindhearted. Blessing.
There are so many blessings.....

Our days are spent smiling in his presence. Sure there are moments of frustration. But even in the face of most challenges we are blessed. Jaxon has an amazing circle of support. We couldn't ask for better therapists, SLPs, OTs, and teachers. They recognize and build on Jaxon's strengths all while lovingly teaching him the things he still struggles with. He is eager to learn, he try's with all of his heart, and he is growing by leaps and bounds. I love my boy.

Wednesday, June 17, 2009

Relief comes with a Diagnosis

We have been fighting for a diagnosis for the past three years. I have to say that to have our suspicions confirmed is a huge relief but the journey to get here has been long. When Jax was three we noticed that he was not talking as much as other kids his age, the words he could say were not pronounced correctly and he was not speaking in sentences. So we took him to Child Find for an evaluation. Autism had not entered our mind at this point. We just thought he needed Speech Therapy. Once we received the report back from Child Find we could not help but see everything pointing to Autism. Among many other behaviors, he was not using his imagination or socializing with other kids. We met with the evaluation team and they said because of his age they wanted to just give him a diagnosis of Speech and Language Impaired. They were hopeful that if Jaxon was able to communicate better some of the other behaviors would improve and others would go away. We were hopeful too. And they were right. Jaxon started at Shining Stars Preschool in a peer model program. Jaxons language improved by leaps and bounds. Before, we could not get him to talk, now we can't get him to stop talking. His imagination and social skills were also improving. But there was still something going on. What was it we thought? Was it all in our heads? We always wrestling with these thougths and the worry that we were not doing enough for him. Well this past October we met with his teachers and therapists during parent-teacher conferences and they gave us the number to UNMs Autism programs to have Jax further evaluated. They had been observing him closely for years and strongly believed that Jaxon was Autistic. We called UNM right away and were put on a waiting list. During that time I read all that I could about High-Functionig Autism. And everything I read screamed Jaxon. That was my boy they were talking about on those pages. After a four month waiting period Jax was evaluated and they said that he did not fall on the Autism Spectrum. Not to discredit UNM but they spent 3 hours with him and did not see him with his peers. His teachers and therapists who knew him for years could see it, and we could see it as his parents. Here is a boy who out of the blue started reading at the age of four. He will read whatever you put in front of him. His teachers tested his reading and the test indicated that he is reading at a second grade level....the test only went up to second grade we suspect it is much higher. His memory and attention to detail is like no other. Yet he can only look you in the eye for about five seconds max. When he talks he is usually pacing back and forth and the topic of conversation is about his passion at the time. I call it passion instead of obsession. When he likes something he does not just like it...he learns all he can about it and that is what he will talk about until a new passion comes along. He would play with other children but when they were killing pretend bugs on the ground or something along those lines he just could not go their in his mind. But yet he is so very compassionate and loving, not typical for children with Autism. If a child is crying he immediately goes to comfort them. He is always telling us he loves us and gives lots of hugs and kisses. He wants to give to everyone he meets. He is always making cards and gifts. So why worry? His teachers were concerned that without a diagnosis he would not receive the help he needed once he entered kindergarten. Jaxon is well behaved and we do not want him to fall through the cracks in the school system. My husband is an elementary school principal and I worked in the schools for awhile too...we see it all too much. So I knew I had to seek support for Jaxon regardless of a diagnosis. There is no way I will let my son fall through the cracks. So I took him to see a well known social worker a few months ago. He has been seeing her weekly since then. It did not take her long to confirm our suspicions. She said we have an emotionally healthy boy with Aspergers (high-functioning autism). High-Functioning Autism or not I have always thought of my Jax as perfect. I don't want him any other way. I just want to provide him with the tools he needs to be and do his best...HIS best, not the worlds definition of BEST. God made him this way for a good reason and I am blessed to be his mommy and see his life story unfold before my eyes.

Forget the Diagnosis

"Autism! Pdd nos! Aspergers syndrome! ADHD! High functioning! Low functioning! Delayed! Hearing these words about your child can be crushing. They can devastate you to your very core. The good news is THEY DON'T HAVE TO!
Let me tell you why….
It doesn't matter. That's right. It simply doesn't matter. If you want to really help your child then read on. I'm serious. Don't be like the thousands who wish they had "lived" this concept sooner.
Pretend for a moment you have a newborn. He is simply perfect. By the time he is two years old, his fingers are so long, they look strange. You go to a renowned physician and ask "What's wrong with my child? Why are his fingers so long?". The physician smiles and says "Your child has a condition called spindle fingers. He has a natural gift for playing musical instruments. Many dream of having this talent".
You're absolutely thrilled and can't wait to share the news. You rush home but on the way you stop to buy a toy xylophone, piano, drum set and flute. You set them out on the floor when you get home and you watch proudly as your toddler strums each one of them. You don't care that everyone else thinks it just sounds like noise. You have a budding musician on your hands and he's practicing!
As the months go by you encourage your child to play instruments. He gets a little older and expresses his preference for the piano. You take him to piano lessons, listen to famous piano players and perhaps even go to concerts. You explain to your son that his fingers are long because he is talented at playing the piano. Your son plays the piano beautifully. He is proud of his fingers and his talent. You are proud of your son.
You run into the physician a few years later. You tell him proudly about your child's piano skills. He smiles broadly and says "I made it all up. There is no condition called spindle fingers". "What?" you shriek "that's impossible. My child is an excellent player".
"Of course he is" says the physician "It's called belief. You believed in your child's fingers. You believed in his talent. You encouraged him. It didn't matter how many mistakes he made. You hardly heard them because you knew he was on the path to greatness. Your son felt your belief. He saw it in your eyes. He felt it course through his being. It inspired him. Every time he looked at his long fingers he thought about his talent. He felt proud of himself. He knew he could do it. Your unwavering faith inspired him to be the best he can be".
My advice to you is this. Forget about the boxes and the labels. Ignore the judgments. Your child is fascinating. Your child is a unique and wonderful being who is incredibly special. Give him the tools. Encourage him on his journey. Never lose faith in him. Stand by his side. Teach him as much as you can. Watch in delight as he soars far beyond everyone's expectations. Everyone except yours and all those who joined your belief along the way!"

Tuesday, June 9, 2009

Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast. "Idioms, puns, nuances, double entente's, inference, metaphors, allusions and sarcasm are lost on me.
5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.
8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included. I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They may have had autism too. The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead? All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.