Friday, January 20, 2012

Beyond Autism

I was watching the news tonight and heard they are looking at changing the definition of autism to be more specific. Right now the spectrum for diagnosis is pretty wide, and because the incidence of autism in kids seems to keep rising, there is concern about funding support for all the kids who currently qualify or will qualify for services in the future.

As a mom of 2 kids on the autism spectrum this peaked my attention. Malia (5 years old at the time) and Madi (2 1/ years old) were both diagnosed with forms of Autism on the same day in 2006. Next to hearing Malia had cancer, it was one of my worst days ever.

Malia has always been a challenge in terms of parenting. She was one of the most active kids I've ever known. She was incredibly smart, yet so often when her behavior was negative I had the distinct feeling she couldn't help her responses, and sometimes it seemed like she really didn't understand why she was even in trouble. There were holes in her language skills, and often we couldn't follow her logic at all. It was like were were both talking to each other, but were having completely different conversations. Her testing was extensive. In the end they said she had PDD (Pervasive Developmental Disorder). It's a high functioning form of autism, where kids process information differently than most kids but have the ability to compensate for many of those processing problems. My guess is these are the kids that would have more difficulty qualifying for services under the new diagnostic criteria. Malia really needed some extra help for awhile. She graduated from special education by the end of 2nd grade because she had come so far, but I doubt she would have done as well without the special support she got with those programs.

Madi was always my soft and sweetly sensitive girl. She was tender hearted and cried easily, but otherwise was happy. She would eat what we gave her (although she always made a huge mess with her food), she didn't care when we said it was time to be done eating either. She played with whatever toys were around... her favorite games including spinning in circles, watching her image in the mirror, lining up toys across the room, and putting toys into a container in order to dump them out all over the floor. She didn't say much (and she didn't have to! Malia always spoke for her when we asked her a question!) By the time she was 2 1/2 I finally realized how little she was actually saying. I counted her words. She had 5 of them. Mama, dada, bye, bed, and Nana. I then realized she never asked us for anything. Never pointed to tell us she wanted something. Never pulled our hand to show us something she found funny. She screamed if Malia took something she was playing with, but never asked for help or could tell us what was wrong. She would come up bleeding, not realizing she had hurt herself. Then she lost the word Mama. It just disappeared. I took her in for an evaluation. She was diagnosed with classic autism, and as they did more testing we came to understand how much of the world she didn't. She didn't understand English. Couldn't follow simple directions, couldn't identify an everyday object like a spoon or cup. She was lost inside herself and living in a world that she could not make any sense of. It was a devastating realization. Desperate and in denial we got a second opinion from Children's. They agreed that she was autistic, and it took just moments of evaluation to concur. I kept wondering how I could have missed it for so long. I agonized over what we could do to help her.

Madi immediately started in special education preschool, speech therapy to begin learning building blocks for speech, and physical therapy to help her coordination and build her muscle tone. Occupational therapy tried to teach her how to use a spoon and fork. I cried for several months. we weren't seeing any change after the interventions we were doing started looking for additional options. At that time there was little public information about autism. Since then it's become a cultural buzz word and thankfully there is much more known about the challenges these kids face. It took some digging at the time though. The information was overwhelming. There were dietary options, different therapy modalities, OT, PT, Speech, etc. I spent endless hours trying to find the best fit for us, and decided ABA Therapy was the best approach for Madi. It was a radical decision requiring a lot of effort. 6 days a week, 6 hours a day for more than 3 years therapists came into our home to work with Madi one on one. When they weren't there we were working with her to reinforce what she was learning in therapy.

Here's the basic premise of ABA. One of the first things Mae learned was to identify a spoon. She would sit at a little table and a spoon would be put on the table in front of her. The therapist would say "spoon". The spoon would be removed and replaced stating "spoon". This would be repeated several more times. Next the spoon would be placed on the table and the therapist would say "Touch spoon". (Madi would do nothing). The therapist would take Madi's hand in theirs and guide it to the spoon. When she put her hand down again, the therapist would say "Touch spoon". (Again Madi would just sit) and her hand would be guided to touch the spoon. This process would be repeated until Madi would start to make a motion toward the spoon with her hand independently when given the instruction to "touch spoon". By the time she would start to move her hand though she would get lost and didn't know what to do next, so the therapist would direct her hand to the spoon and repeat. As she was able to do more, the prompts were removed until she could complete the direction to touch spoon. It took her 3 days to be able to follow that one command. (with breaks every 10 minutes or so and a break for lunch, snack etc). I was happy to see progress though until day 4. The therapist sat down on the floor and sat Madi across from her. She took out the same spoon as the day before and placed it in front of Madi. She instructed "Touch spoon". Mae stared blankly and didn't move. The therapist got her attention, repeated the command and directed her hand to the spoon. It took 3 hours for her to complete the command independently. The next day the therapist placed a fork alongside the spoon. "Touch spoon" she said. Madi looked completely confused. She couldn't find the spoon when the fork was beside it. Another 6 hour day working on all of the lessons from the week. You see our brains are extraordinary. Each part does different things, but normally the areas of our brains work so seamlessly together we don't realize each part of our processes are separate parts working together. Madi had to learn everything separately then learn to put it together. She had to learn what a spoon looked like at a table, on the floor and next to another object. Later she had to learn that when she said the word spoon herself that it was associated with the object she knew as spoon when someone else said it. Yep- it was that complicated. It was such hard work for her. It was heartbreaking for us to see her work so hard and get so frustrated and to see such painfully slow progress. But she did make progress. In a little over a week she could consistently touch a spoon when instructed. Next she learned fork, while continuing to work on spoon. That took a little less than a week to master. Next came bowl, and cup. In a month she could touch anything at the table if I instructed her to. She was able to learn, and as she learned more the pathways in her brain moved faster and with less effort. Within a year she could learn to identify a new object in a day, and retained the information she learned more reliably. She had to be taught spacial relations. What does behind mean, or in front of. She was 3 before I realized she did not know the names of the rooms in our house. We spent a week on helping her find an object in the bedroom, bathroom, and kitchen. Imagine having to teach your child every little thing. They are not able to assimilate anything from their own environment. That was our life with Madi until she was almost 6 years old. By then she had come so far that we began to see she was learning things the way other kids do, just from observation and imitation. She was starting to communicate verbally. She could tell us when she was crying if it was because she was hurt, or mad or sad. It felt like a miracle, and in some ways it was. Her lead therapist said she had never seen another child go from Madi's original state to where she was in such a "short period of time".

We stopped ABA at the beginning of the summer Madi was starting kindergarten. She was 6 with a June birthday, and Malia proudly helped her on the bus and to her classroom that first day of school. Madi still had special education and speech support, but was in a normal classroom without a para and was thriving. Malia watched out for her little sister at school and it was such a blessing to see the two of them race off the bus together each day. Life felt almost normal for 2 months. It was that October that Malia was diagnosed with cancer and our life shifted from fighting to overcome Madi's disability to fighting for Malia's very life.

I am so proud of my Madi. This year she has aced most of her spelling tests, and excels in math. She still struggles with some language comprehension, and for this reason peer relationships are more challenging for her as she gets older, but she is also gaining proficiency in language every day. Tonight at the supper table she prayed and thanked God for the beautiful day and that someday we can see Grace again in heaven. At one time we agonized over Madi's future, now we can see it for all the possibilities it can hold. She will likely never be "normal" (is anyone, really?), but she is and will always be amazing. I can't wait to see where God brings her. Beyond autism, she is who God created her to be... and she is our beautiful blessing.

Friday, January 6, 2012

Beyond the Ability to See

I was watching Ellen on TV a few days ago. I love her. She is so stinking funny. She is generous and entertaining. She appreciates great music and makes people smile. On the show I watched as she surprised an unsuspecting family from the audience struggling financially with $30,000 worth of amazing gifts. The family wept, the audience cheered, jumping up and down, truly celebrating the moment with the deserving family. I felt myself caught up in the excitement too and while smiling ear to ear saw my hubby across the room with the same look on his face.

Then it hit me, like a bolder being thrown from the moon onto my head. We celebrate our stuff. We glory in our jobs and our homes, cars, and toys. We work hard to pay for our vacations and technology. We cheer loudly when people are gifted with things beyond their wildest dreams. For the family on Ellen. For a woman who wins the lottery. A young couple winning a car on a game show. A man who is reunited with a beloved car he had as a teen. It makes us happy to see people get the things they really want.

But what if what we really want we’ve lost sight of altogether? What if it’s beyond our ability to see over the things that have accumulated around us?

I miss Grace. More than anything I can describe. The experience of grief is like a volcano. It burns hot and is boiling, spitting, and moving beneath the surface of my external body which appears from the outside to be stable. At unexpected times grief bursts out, spilling over me along with the tears of longing. It hurts. It burns me and reshapes who I am as the molten lava cools. I can’t predict it any more than I can control it. I want it to be over. I want it to stop.

Someone told me recently she knew someone who “went crazy” after her son had died. Without hope I can understand how easily that could happen. But I do not mourn like those with no hope. That is what gets me from one day to the next in the midst of the burning pain of loosing her. On the other side of this life there is another. I am as confident of this as the truth of waters ability to be frozen into ice. It looks and feels different, but it goes on. It takes another form.

Heaven is a promise. That promise holds my little girl, my best friend, and many others who I love so very much. I’ve been reading everything I can get my hands on lately about heaven. It’s safe to say that my heart wanders there often. Dreaming of what the promise of heaven holds, not in terms of a dreamland of self-fulfillment, but of the fulfillment of God’s perfect plan. To be everything God created me to be but fell so short of here on earth. To indulge not in the glories of heaven but in the maker of it all. To experience the greatest reunion of them all.

The family on Ellen will love the stuff they got. It will make them happy for awhile and may help relieve some of their financial strain for a time. But like every thing in this world, it will all eventually break and fade and end up in a junkyard somewhere. The people in the story aren’t junk though. They are beautiful creatures made in the very image of God. They are pursued with passion by Jesus Christ. He bought them on a cross to give them the gift they truly desire. Whether they know it or not (and I pray they already do), heaven is the only gift that keeps on giving, and it’s only a gift Jesus has the ability to give away. It is his alone to hold. The same love that kept him on a cross is the same love that offers heaven’s promise to us today. Acceptance of the gift is required. The price has been paid but there is still a choice to be made. If you haven’t ever accepted the gift Jesus offers, say a prayer today. It isn’t given to perfect people, it’s given to humans. None of us is good enough to get in on our own. More than anything else in the world what I want is to have you there with me. I will jump and cheer and high five everyone I know to hear you got what you really wanted.