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!

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.

Donkeys in the Cow Pasture

Donkeys in the Cow Pasture!

I know it is the strangest title for a blog. When we moved from San Diego, CA to East Texas, we noticed things were definitely different here. City to the country, you can't get much different. From a city of 3 million people to a city of 11,000.  I think the sign says 11,236 to be exact!

It doesn't take living here that long to notice there are cows! They attacked all our senses: sight, smell, hearing and touch - yes my daughters actually went out in field behind our house and petted them. Ah and can't forget the sense of taste, we bought a half a cow from a local woman.

It wasn't long before I began noticing that they have donkeys in the cow pasture. The first time I saw it, I didn't think much about it. Hey, people can have pet donkeys, I suppose. However, those donkeys kept popping up over and over in different fields. Quite perplexing to this city girl (who really is a country girl at heart). I found out that donkeys will protect the herd. They will kick at any animal that would come to harm the cows. So totally different, yet it has a purpose that is so important to a farmer that has cows!

Leah has autism. She sees the world so different from us. She doesn't have the same purpose as us cows plodding along. So much we can learn from a donkey every now and then. If we take the time to listen, they have some lessons that will stretch us, teach us and endear us.

This is dedicated to my donkey in our cow pasture! ( with one bull that is happy it finally has a mini bull running around!)

Autism - Leah's story - part four

Leah started therapy at a little over 3. She began speech and physical therapy twice a week and occupational therapy once a week. I will go into detail in later posts about the therapies for people who would like to try some for their kids.

She still wasn't diagnosed with autism.

August 2007, 3 months over the age of 3, Leah escape from the house. I thought one of her sisters had her and they thought she had gone with me. It was probably about 20 minutes later when I asked the most dreaded words in our house. Where's Leah? Nothing could strike action or panic in us like those two words. We started looking through the fields and the back cow pastures, woods, and thoroughly covering a pond that is right behind our house. No where! A neighbor noticed us and suggested we call the police. Over 100 people showed up. 2 hours later, Leah was found in a creek, chest high in water, unable to get out and about 6 feet away from water that would have been over her head.

She had minor scratches and oodles of mosquitos bite. She had trekked through bushes, thorns, trees, fields with bare feet and wearing nothing but underwear and a tank top. She probably passed copperheads and water moccasins and yet came our virtually unscathed. She would say the word "snake" a few times over the next few days.

I can't even explained the horrid feeling of those 2 hours. The being trapped in the house unable to look, in case, they found her or hearing a cop tell a neighbor that they couldn't be in the house because this was a crime scene. I once thought how strange it would be that people would start cleaning their house or doing something menial as that during traumatic times. That is what I wanted to do, I NEEDED to do something! So I made phone calls and prayed and prayed.

The immense relief to hear they found her. Time stopped as I waited for what seemed hours in those 15 minutes waiting for her to come home. I later found out they were cleaning her up a little because she was absolutely filthy and they didn't want me to freak out. Oh, the absolute pleasure of cradling her in my arms and still the awkwardness of all the neighbors watching me carrying her home. Yet I knew they were rejoicing and relieved almost as much as we were.

The despair an hour later and she is clawing to get out the door. "Water, water!!" is all she can say. I breakdown.

I feel that I can't handle this anymore. I can't keep her safe. I don't know what to do with her. I feel like a horrible parent. I am confused, exasperated and tired. So very tired. I want to help her and all she wants is to out and play in danger. I don't understand her, nothing I try works. I am at my lowest, not just lowest with her, but lowest in my life. I have never felt so helpless. It is in this moment, I feel God embrace me and I know it is going to be alright. I don't understand how, but I know He is in control. He was with her every moment she was lost. She was in the palm on His hand. God is good. He is good to me. He is good to Leah. I have to trust in the God who IS.

Shortly after this we find a device called made by Ionkids that sets off an alarm if a child wanders to far from the home device.  I can't find that device anymore. This one is similiar and the best rated.

Another great program if your area carries it is called Project Lifesaver. http://www.projectlifesaver.org/ It requires training personal and can locate a person within a few miles radius. Much more accurate than the personal devices. It has a small monthly fee and an initial bracelet purchase. Sometimes you can get a scholarship for the bracelet. Our small town is looking into starting this program because of a alzheimer's patient that went missing a couple years ago.


Leah no longer requires a device. As I was told by many parents of other autistic children because she was mildly autistic she would probably out grow it. The day she was lost was the worst, she ran away no more day and slowly she began to run away less and less. She doesn't do it anymore.

Leah's Story - Part three

Several things I started to notice during this time and some I looked back and noticed after a lot of research on autism.

Leah began to do a lot of hand flapping. Shaking her hands when upset or when over stimulated. She also ran and walked almost completely on her tip toes. She would shake her hands and continually hit her face over and over. She would have a little fist and firmly tap her mouth or chin.

She didn't understand pointing. You could point and she would just stare at your hand. She still at 6 cannot regularly get the idea of pointing. She will look completely in a different place than you are pointing. I didn't realize how strange this was until my son was about 9 months old and he can follow pointing better than his sister.

Routine became more and more important. We sang a song to her one night and then we had to do it every night, she had a piece of cheese one night and it became a unbreakable routine with melt downs.

She lined up toys, my husband reminded me. I remember she just didn't play with them. None of them. I couldn't get her interested in playing no matter what I chose. She had a stuffed puppy that went everywhere. That was it. She had to have it... much like any child that is attached to a comfy item.Birthdays and Christmas were perplexing. When grandparents asked what to get, I had no idea. I would futilely try and find something she would like

She didn't like to be touched or hugged. On a rare occasion, she would allow family immediate members. If someone else touched her she could go into an immediate melt down or shoot away like someone touched her with fire.

She also began to develop Echolalia: repeating words or phrases she would hear. The worst was when some neighbors were walking by, I think she was almost 4 at this time, and she started screaming out the window, "Help me, help me somebody, anybody" from the Lion King. :o) Life is always interesting with an autistic... you get a new view on things.

The worst behavior was her need to escape. There is a term for it, I just can't remember it. She would watch, undo locks, pull off alarms, get into the garage, open the car door, hit the garage door opener and escape at 2! It was horrible. Everyone would say, "Well you have to keep your eye on her every moment." Do people really understand the impossibility of that statement? In the time you read this blog, she could have escaped if she saw a way. In the time you read a piece of junk mail, she would watch and see you were distracted and be gone. It was exhausting! To make it worse, most autistic deaths are drowning because they are attracted to water.

Then her sleep habits began to become very irregular. We couldn't get her to sleep, couldn't keep her asleep. Some nights she would sleep less than 4 hours.

Socially - she loved kids! This is not a typical autistic behavior, though I have heard of a lot of autistic kids that are very social. She would migrate to them whenever she saw them. There was never a stranger. However, she had problems interacting with them. She was always and still is a couple years behind her age. She still doesn't pick up on social cues. She doesn't understand when she is frustrating someone or when her behavior is unacceptable. Every social rule has to be taught. Every proper social response needs to be taught. With a child that has low receptive language skills and very few black and white situations this can be a challenge sometimes. She is very literal.

If it is okay to laugh at someone being silly when they fall, then why can't I laugh when they fall another time. If I play with a toy this way in one situation, why is it unacceptable in a mirage of others. We learn a lot of social cues, social rules by situations, by facial expressions (another tough things for autistic to learn), by tone of voice, by personal history, by observing. We transfer these into different categories and we recategorize as needed. An autistic person can't do this. It makes for a lot of social embarrassment and awkwardness and hurt for both parents and children.

To this day, Leah (7) has a hard time with receptive and expressive language. She is improving and I pray she will become more and more fluent in understanding language. She more often than not answers questions with completely unrelated answers. She gets a lot of blank stares, mom included. She will focus on one word and kinda like playing Taboo will answer something that comes to mind. If I asked, "Leah did you enjoy going to the library and reading books about dinosaurs today?" I might get a response of "I have a book about puppies" (she picked out the word book) or a response of "We are going to paint a dinosaur in my room." (picked out word dinosaur). The simplier and shorter the question, the more likely I am to get a better response, but not always. "Did you like going to the library?" is a good question. "What was the best part?" is not a good question - too abstract.

Autism - Leah's story - Part two

By the time Leah was 3, I could tell on top of everything else we were dealing with that she was way behind on everything now. I asked for a speech therapy referral. Her doctor didn't think she had any problems, however, still gave me therapy. Kinda confused me as I watch the doctor give her the tests for where she should be for a 3 year old, able to draw a circle and some other shapes, counting, name etc..... She failed them ALL! Follow your instincts - you know your child.

Leah's breakdowns were getting worse by this point. She would go into rages - throwing things, running from item to item, table to table and just destroying anything she could get her hands on. You couldn't reason with her. All you could do was hold her as tight as you could until she would settle down. During these times, her eyes would glaze over. It was like she wasn't there. Receptive and expressive speech were almost non-existent. It was a very trying, heart wrenching time. I felt like no one understood. I felt like they just questioned my lack of discipline. I wanted to scream at them, "Look at my other 3 girls ... Do they look like wild children??!!"

This was a very trying time. My whole world was spinning. Everything I thought I knew as a parent was being thrown out the door. God was working on me learning to depend on Him in everything. I had to learn to trust His work, His plan and His future. I could control absolutely nothing! I was going to learn this in a very hard trial in the near future.

A lot of days, I felt so utterly alone, overwhelmed and in tears a lot of the time. What was I doing wrong? I would hide her in the home most of the time. Shopping trips were horrible for her. I have realized hindsight is that she was way overstimulated. I did realize while going through it that I would have to take her to a quiet corner of the store to let her settle down. Again the judgmental stares. As if I don't have enough to deal with.

I wished I knew the truth of not valuing the opinion of man that only has a breath of life left. Each breath God gives and can take away, so of what value is their opinion. I urge others going through this, find support of those going through it and remember you are only accountable to God. His opinion is the only one that truly matters. He will give you the strength to get through. This is actually for everyone's benefit in your family to God's glory.