Emily's Journey Somewhere Over the Spectrum

Emily Elizabeth Lawson was born September 3, 2002. From the moment she was born I knew something was different with her. She cried so much and didn't seem as affectionate and cuddly as a baby should be. She met all of her developmental milestones. However, there were things that my mother's instinct told me to question. Before her first birthday, I took her to an opthamologist. The way she looked at things was odd.  She would stare at a board book in a manner that that struck me as strange. It was as if she were looking at the pictures but not really seeing them. All vision tests came back "normal", but I was told she could be nearsighted which didn't surprise me with our family history. She had horrible separation anxiety before she was a year old. I could not leave her sight. I was also told this was "normal". She was so difficult to get to sleep. I would rock, pat her back to get her to sleep, but the instant I stopped she was awake. For hours. She also had a strange habit of picking her eyelashes when she was going to sleep. She had a thing for strings. Carpet fibers, loose hair on the floor, my throw pillows. Anything that was stringy, she would put in her mouth along with every other possible non edible item. I was told this was "normal". Babies put EVERYTHING in their mouths. Right? Another indication to me that something was not "normal".

At the age of two, things really started to become apparent to me. Again I questioned them. She was not learning things that I knew she should know. As a stay at home mom, I prided myself on reading to my kids and educating them at an early age. By the age of two, she did not know colors, numbers or letters. At her two year old check up I asked the pediatrician who reassured me this was "normal" and that I should not "expect my second child to be as smart as my first child". I knew this was not right, but since a professional was telling me this, it must be true. Right? At the age of two, I transitioned her to a toddler bed. I thought she handled it very well. I was able to put her in the bed and close the door and she never made a sound. After 2 years of virtually no sleep, I welcomed this. As soon as she turned two, she started a Mother's Day Out program once a week and I enrolled her in gymnastics. She would do forward rolls everywhere. A month into gymnastics, I noticed a bald spot on the top of her head. Thinking it was just from too many flips I pushed it aside. A week after I noticed the tiny bald spot, I went to wake her up one morning and found clumps of hair in her bed.  I was horrified. I called the pediatrician and asked if I should be alarmed. I was told to monitor her closely to see if it was from gymnastics. I decided to watch her sleep the next night. As I put her to sleep, I sat outside her room with the door open. What I saw broke my heart. She was pulling her own hair out of her head. Why? Why would a TWO YEAR OLD do this? I called the pediatrician again the next day and asked for help. They referred me to a child psychologist and said that in the meantime I should stop her from doing it and offered me splints to put on her arms at night, so she could not reach her hair. Refusing to subject my child to an uncomfortable sleeping arrangement, I started sleeping with her. In a weeks time, she went from pulling her hair just at night, to all throughout the day. I finally had my appointment with the psychologist. She wanted to meet with me prior to seeing Emily. I was excited to FINALLY have someone  help me with all of the questions and concerns I had.  I spoke in detail about Emily's first two years. I wanted her to hear it all. I wanted help for my baby. Her conclusion after all of the information I presented, was that it was simply "behavioral" and "she would outgrow it". Nothing else. No suggestions, no follow up, no wanting to see Emily to evaluate her. I was shocked and angry, but thought...this is a professional telling me this so it must be true. Right?

When Emily turned 3 we tried Mother's Day Out again. I signed her up for two days a week thinking that the additional day would give her more security in that environment. I also knew that she needed the separation from me. She was still struggling with separation anxiety. Since I was sleeping with her at night, she was very dependant on me. I tried to avoid stressful situations with her to prevent another round of intense hair pulling. She was the oldest kid in her class by months. It became apparent to me how far behind her peers she was. She was able to speak clearly but could not retain any information. She still did not know her colors, numbers, letters, etc. I was still told this was "normal" and I should not worry about it. She preferred to play by herself at school. She did not follow directions well and resisted change. This was chalked up to bad behavior and defiance again. I was told it was "normal" to have one of your children be a model student and the other be the rebellious one. This was another professional(teacher) telling me it was ok, so I should not be worried. Right?

A few months after she turned 3, I had more concerns with her vision. Whenever we were in a crowd, she would say "Where's mommy". I could be right beside her and she would ask. It was like she could not find me in a crowd. She would stare out the window for hours and say "Who is that?" There would be no one out there. Her depth perception was really bad too. She would not walk on the lowest balance beam at gymnastics without being paralyzed with fear. It was a foot off the floor. I again made an appointment with an opthamologist. Her behavior was really difficult at this time. She would scream and cry over the smallest things and I would have a hard time telling her no. But other times she would be off by herself just laughing and giggling. There was no in between with her. She was uncooperative getting her eyes dialated and they were not able to perform an exam. The Dr mentioned face blindness as a possibility. That was something new that had just come out so there was not much info about it. Walking out of the office even more lost than before, I just continued to get through each day. I was honestly exhausted dealing with her behaviors as well as having a 5 year old.

Anxiety struck again with a vengeance at 3 and a half. She had stranger anxiety which was common for kids at that age. However her anxiety was severe and was related to mostly to men. There were two men she was not scared of. Her daddy and a neighbor. If any other neighbor were outside, she would refuse to go play. If we pulled up to a drive thru and she heard a male voice through the speaker she freaked out. It became so debilitating for her that it made outings almost impossible. Checking out at the grocery store one time a bag boy came to bag our groceries. She immediately clung to me and I politely told him that I could do it. The check out lady stared at me. I just smiled and told her that she had a fear of men. I will never forget the words that came from her mouth. "Has she ever been abused?" I told her no and walked out of the store crying my eyes out. It had never crossed my mind that someone would think that. I was devastated and again depleted.

Our lives were affected by something that no one could define for me. Not one professional had offered me any help or advice in dealing with Emily. I felt so alone. We couldn't go out with friends anymore and our life became one of sheer survival. My marriage was suffering as a result. I felt like I was dealing with it all by myself. Why wouldn't someone help me? Help my child. I was screaming inside while Emily screamed for hours some days. After the grocery store incident, I once again called my pediatrician and begged for help. She would not return my calls. Fed up, I contacted another physician and asked to transfer my charts. After the pediatrician found out I was leaving, she called me on a Friday night to talk. I told her I had been asking her for years to help me. She said for me to take Emily again to a child psychologist. I had no faith in the professional or medical field at this point, but I agreed to seeing another psychologist. A few weeks before the appointment, I found out I was pregnant for the third time. I was desperate to get her help before I had another child.

Three weeks later we walked into the office with Emily. They wanted to see her. I had a small glimmer of hope. This psychologist was sweet and caring. She observed Emily play alone. She observed her playing with me. She listened to my concerns of what if the noise of a new baby was too much for her and she hit him. She calmly looked at us and said, "I am not an expert in the field, but I suspect PDD". I clearly remember Scott and I looking at each other. I had never heard of it before, but she gave us a quick run down. Emily seemed to fit into that category although I wasn't 100 percent certain. She told us to have her evaluated at Mitchell's Place. A private facility that specialized in Autism Spectrum Disorders. Having no knowledge of them I decided to contact UAB as well. I knew their evaluations were thorough but there was a 6 month wait. I couldn't wait that long. Mitchell's Place had a few spots open, although our insurance would not pay for it all. Biting the bullet we went to Mitchell's Place for a battery of evaluations. At the age of 3, two months shy of her 4th birthday, she was diagnosed with PDD-NOS, generalized anxiety, trichotillimania, speech and fine motor delays. She would need help. Lots of help.There were so many suggestions. Neurologists, therapists, speech and language pathologists. I walked out feeling overwhelmed, but relieved. I walked out feeling angry and bitter at all of the missed signs. WHY had no one in almost 4 years seen this or listened to my concerns? I walked out feeling like a failure as a mother that I didn't make someone do something sooner. A few weeks later she was evaluated by the local school system and started immediately in a program at the elementary school where she would receive help for her diagnosis.

And so began our journey down the yellow brick road...

Thanks for reading,
Jessica

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