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

Monday, January 18, 2010

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.

Sunday, January 17, 2010

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.

Saturday, January 16, 2010

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.

Autism - Leah's story part one

My six year old precious lively loving Leah girl is a joy and always adds adventure and humor to the family. She loves fun, real active lively fun. She wants to try everything! She saw an astronaut on the moon and asked if she could go. She saw someone sliding down a cliff in a movie (not actually enjoying it) and she wanted to try. :o) She lives life to the fullest, she feels things very deeply, loves very completely and see things very differently. She forgives so easily, accepts people so freely. She also happens to be autistic. Autistic doesn't make her who she is. It is a part of what helps her see the world the way she does.

I can look back and see very subtle things as a baby that pointed to a tendency to autism. My husband has an uncle that has Asperger's syndrome. So, there could be a genetic link. We had a doctor that cut the cord way too soon, so is there oxygen damage? I came off a vegan diet of 3 years and then got pregnant with her... is there a lack of nutrients while in utero.

We gave Leah her first shots when she was over 2. 2 shots. She changed! She stopped talking. She forgot all the letters of the alphabet that she had taught herself (with Leappad toys) except her too favorite S and W. Her personality change was the hardest. If I live in a country that had a big influence of demons possessions. I would have been convinced she was. However, I knew better. I allowed the shots. I have asked many many questions over the years as to the "why". I have come to the point of resting in the sovereignty of God. God could have prevented it all. God can cure her. God loves her and us. It is God's will to be glorified in us and Leah's autism is to the glory of God.

I thought maybe our struggle, our walk through this and continually walk through this will be of some comfort to others. I want to at least document for myself. We have come through some tough times and seen some huge victories.

To God be the glory!