This blog is about my daughter Leah, who is fearfully and wonderfully made, and our experiences with autism.

Wednesday, July 7, 2010

Leah's story Part 6 -Imagine That!

Those who have been around autistic people learn that they tend to not have an imagination in the way we think of it. If you have read Temple Gradin's book, Thinking in Pictures, you will see how vivid her thinking is. Yet she doesn't have an imagination as in fantasy type thinking. Her book is listed in my post on book recommendations.

During my first year of reading, I read through a lot of stories by parents. One was The Boy Who Loved Windows. (Also listed in book recommendations) She mentions some of the therapy they went through with their son. They would gentle push him past his comfort zone. This probably got filed in the back of my mind and God brought it forward when I needed it.

I was overwhelmed at the "needed" therapies. The availability here was non-existent for most of them and even if it was here, the cost was far more than we could provide. Again I felt the struggle of not being able to provide what Leah needed. Again God drew me to Him. He promised to be ALL we needed. I began to pray that God would provide for what we needed. He would direct us. I felt a nudge to start playing with Leah (about the age of 4 - I think - times become confused in my brain sometimes :) and encouraging Olivia and Rachel to do so as well. This ended up giving us a huge breakthrough with her. God always provides!!

Leah's idea of imaginative play was mimicking what she had seen. She had begun to play some, which I was grateful, but it was rigid. She would watch Dora or Blues Clues and act out whatever epidsode she had seen. No deviation.

We began to play with her. Since, like all small children, she would watch the same videos over and over,we knew them. She began to take part in them, but we began to throw in surprises. She was sliding down the rainbow with Blue again and all of a sudden a bear popped out. The look on her face was amusing. She didn't know what to make of it. She would stare a little while. It looked like a "Does not compute" look. Then she would go back to doing what she was doing. This would go on for weeks. Then one day, she laughed when we did something and then she would scream or play a long for a minute but only following our lead. Then slowly, ever so slowly, she began to deviate on her own. At first, she did it to get a reaction from us. Then she began to do it for her own pleasure.

Little did we know the monster we were creating. This child has had an imaginary friend for years. We have had to make sure we don't sit on Honey. Honey has had pink hair, blue hair, yellow hair, been six feet high and one inch tall. I had to go back to the store because we left Honey at the store with Leah in tears.

Honey has slowly been going away. Her imagination has not. My two recent favorite stories are below.

Leah was playing in the backyard. I could hear her for over an hour screaming and laughing. She was wildly going from one swing to the next on the swingset and up and down the slide. She came in all out of breath. "Mom, I was on a magic swing set. I went to jungles and volcanos. I was scared. I am never going there again!!"

Benjamin kept yelling for Leah one day. "Eah" 
Leah: "My name is not Eah!"
Benjamin: "Eah!"
Leah " My name is not Eah!"
Benjamin: "Eah!!"
Leah " My name is not Eah!!"
Me: "Leah. Benjamin cannot say an L. So he cannot say Leah."
Leah: (sighs and rolls eyes) "My name is Pippi!"

Pippi Longstocking, a girl of a great imagination, is the perfect idol for my lively Leah.

One last note: When we helped Leah out of her rigid play, it had far reaching affects into the rest of her personality. She began to break from routine in general. Nighttime routines didn't have to be so rigid. Daily activities could break from the norm. Somehow it helped her adjust in many ways, ways I would have not imagined. But God knew!

Tuesday, July 6, 2010

Leah's Story - Part 5

A few months after Leah's runaway episode, I was talking to a mom in the therapy office. I kept being drawn to watching her son. He was about Leah's age. He was autistic. As I watched him, I kept thinking that is Leah!!! My sister in law that was going to the same office at the time had seen him as well. I brought it up later and she had seen the same similarities

I made an appointment with a psychologist recommended to me by the therapy office. He confirmed my suspicions. I felt a little relieved. I felt like I was getting some answers. I also felt like I could give some answers to others. I began to do major research on the Internet. I wanted the diagnosis so I would know where to begin and get some solutions. Wow! I had no idea how daunting a task that would be. The Internet is filled with every one's ideas, opinions, and experience. I began to see how broad a thing autism is. It has many causes and even more "cures".

I informed my doctor of our diagnosis and she wanted a second opinion by a developmental doctor. We had a thorough 2 hour appointment. She confirmed what we already knew. Though we disagree on minor issues, treatments and influences in autism, we can work together. She is very knowledgeable and willing to work with me.

It has been over 3 years since that diagnosis. Leah has come a long way. Most people that meet her in public wouldn't know anything is different. Those who interact with her, do.
Speech Then - hardly a word spoken, couldn't understand basic speech. Now - talks nonstop, understands enough to function daily and more!

Physically - behind in coordination   Now - still behind, but progressing. She is very active.

Occupational Therapy - Then - writing she could hardly draw a circle   Now - writing letters
                                      Then - could manipulate, stack blocks             Now - no problem
Plays with legos, blocks, computers

Imagination - Then - very set, rigid       Now - highly imaginative

Routine - Then - had to have it           Now - not so much

Social about the same, but she does fairly well with kids younger than her.

Educational - We are making progress, she is years behind. After 2 years, she still struggles with counting, she knows letters and sounds and memorizes words, but doesn't break down phonetically.

One day at a time. One goal at a time. Always to the glory of God!

Autism and Vaccines

Even though we saw the effects of vaccines on Leah, we still didn't know about her autism. These are my personal thoughst on vaccines, which I know can be a hot topic. I have studied for hours on it, read both sides of the issue and read through endless personal testimonies.
Vaccines don't harm everyone, though I think there are side effects to them, most people's bodies dispose of the toxins. Vaccines are filled with a lot of unnecessary garbage. That is what causes problems and help trigger autism in some people. Vaccines don't cause autism, vaccines can trigger it. However mercury poisoning has the same symptoms as autism. Do some research on the preservatives in vaccines. Some people do not get rid of toxins the way others do. I do not believe the reports about vaccines and having no effect. I have spent thousands of hours reading and learning. I have read too many stories from parents and have talk personally to some parents that have had severe reactions overnight far worse than what we experienced to not know without a shadow of a doubt that vaccines CAN cause harm. I don't trust the FDA to be the final source of truth. They approved vaccines at 50X THEIR OWN recommend dosage of mercury, the second most toxic substance in the world, for newborn infants. Read Evidence of Harm for more information.

This is my short synopsis on what I have learned. I feel each parent must prayerfully consider their choice. Also consider if you choose to vaccinate, why not consider waiting until they are old enough so you can actually see if it is affecting them. Hard to know that if they are receiving them all along.

Lastly, not everyone is affected by vaccines. Also, not every autistic child is affected by vaccines. Some are though!

Parenting has some tough decisions along the way. We each need to come to our own conclusions on what to do with our own children as the God given authority in our own families. I respect your choice and I ask mine be respected.  Having a child that severely reacted to them, we believe the risks outweigh the benefits in our family.  I pray God will direct you in your choice.