Monday, September 24, 2012

That's what friends are for.



When my daughter was around eighteen months old, I started noticing that she wasn't talking, she often avoided my gaze, and she rarely acknowledged the presence of anyone else in the room with her.  Since we were fairly new to our community, and we didn't have many friends or family seeing our daughter on a regular basis, our friends and relatives we talked to on the phone often downplayed our concerns.  I frequently heard, "you are a PICU nurse, you are just used to looking for something to be wrong", or "This is your first child, she will talk in her own time".  As a mother, this was surely what I wanted to hear.  I wanted others to tell me that I was crazy, and of course that my daughter was fine.  

Even though my little girl didn't meet her milestones at her 12 month and 18 month doctor's visits, the doctors assured me that all kids develop at a different pace, and that we should wait until the next visit to see how she was progressing.  I know now, that early intervention is key.  I feel like kicking myself for not pushing the issue with her doctors, but once again, I wanted them to tell me that everything was fine.

It wasn't until my best friend and her family were visiting that I came to the realization that something was truly wrong.  My friend has three children.  At the time their ages were 12, 5, and 18 months.  Her little girl was just about six months younger than my daughter.  While they were visiting, it was very apparent that my daughter was delayed.  My friend's little girl was following two and three step directions.  She would look at you and answer immediately when she was asked a question.  She was basically running developmental circles around my daughter.  When my friend's family was interacting with my daughter, she rarely looked at anyone when they spoke to her.  She didn't respond to questions, and she surely didn't follow directions, one step or otherwise.  She had quite a few meltdowns while they were visiting.  She wasn't used to having that many people around, and she didn't know how to cope with being so overwhelmed.  

One night, after a particularly trying day, I put my daughter to bed and I sat down on the couch with my friend and started crying.  It was so apparent that something was wrong with my daughter.  She was just so delayed compared to my friend's daughter.  My friend sat with me and affirmed that she also recognized that something was not right.  I can only imagine how hard this was for her to say to me.   It takes a true friend to sit down with you and be totally honest in such a uncomfortable situation.  I could have been angry with her, I could have stopped talking to her, but she cared enough to say what needed to be said.  I love her dearly, and through both of our personal trials, we have only gotten closer.  It is rare to have someone who you know, without a doubt, will be there for you no matter what.  I will be eternally grateful to her for being so honest and for caring enough about me and my daughter that she would tell me the truth instead of telling me what I wanted to hear.  I am very blessed to have her in my life.

After that visit, I started to get ball rolling.  I sought help from people at work (the hospital) who had experience with developmental delays, and I started looking into the Early Intervention Program through the county.  When her two year old appointment came up, I did not ask what the doctor thought, I went into the appointment and I insisted that we see a developmental pediatrician.  My friend's family came to visit at Thanksgiving.  By December, my daughter was receiving OT and ST.  By the next March, she had officially been diagnosed with Autism.  

If we hadn't pushed to get her services, who knows how long it would have taken for the doctors to recognize that there was need for them.  If my friend hadn't been so honest, who knows how long it would have been before I acknowledged that my daughter was delayed.  Even though hearing that something was wrong, and finally receiving the autism diagnosis was probably the most challenging time in my life, I learned some things through dealing with it.  One, I am very blessed to have such a wonderful friend and support system.  Two, I am stronger than I realized.  I never thought that I would be able to deal with a special needs child, but God continues to daily give me patience and gradually he is helping me to accept this diagnosis.  Three, I realized that I have to be my child's advocate.  A mother always knows when something is not quite right.  In nursing, I would often get a gut feeling that often turned out to be spot on.  As a mother, I had that gut feeling, but I second guessed myself constantly when others told me that everything was fine.  Now, if I feel that something is not right, I push the doctors, teachers, and therapists until whatever is going on is recognized.  

I am a stronger woman because of this experience.  I think that I was supposed to have a child with autism.  I don't think that it was a mistake.  God gave her to me to make me a better person, and I couldn't love her more.

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