Changing Normal

Changing Normal

Kim’s Story.  She is 41.

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I didn’t learn that my daughter, who is now 12, had autism until she was about four years old.  My pregnancy with her was very difficult and I had to have a C-section.  Her brother is three years older that she is and I was determined not to compare my children to each other.  During her early years I was also in the midst of divorcing her father, so I think I was in a kind of fog trying to cope.

When I look back on those early years, I realize that she was doing lots of things that didn’t seem normal.  She wouldn’t look me in the eye, didn’t talk much at all and wasn’t potty trained by the time she was four.  The thing I really noticed was that she would put her Barbie dolls in a straight line and didn’t play with them.  She just liked lining them up.

My ex-mother and sister-in-law were the ones who got my attention and said they suspected she might have autism.  I called the Delaware County Special Ed Co-Op and they assessed her.  They had a meeting with me, gave me her evaluation and said they believed she fell on the autism spectrum but was high functioning.

My heart was heavy when I heard that diagnosis knowing that our life would be different from then on. Our normal was changing.  My ex just wasn’t on the same page as I was and had trouble dealing with it.  He seemed to fall off the radar.

I enrolled her in Huffer day care. I was thrilled. I knew she would get the help she needed.   Things started improving very quickly after she started.  I still have a portfolio from that time showing all the improvements.  They sent a note home one day and said I didn’t have to send pull-ups anymore; she was potty trained.  And where she once just drew lines, she was writing letters.  It was like she had been locked in a body that wouldn’t co-operate and their guidance and teaching unlocked her.

I became very proactive during that time.  I did a lot of research online on autism and tried to keep up with all the latest information.  I also was involved with Interlock, a support group for parents.  That was very helpful.

She was still doing unusual things like arm flapping, which she finally stopped, only to switch to picking at her front legs when she was stressed.  She still does that.  When she was small, she would just eat one color of food, and now she will just eat strange combinations.  I think it has something to do with colors and textures, but I don’t know.  We don’t do any special diet therapy.  I tried some, and they didn’t seem to do anything.

They developed an Individual Educational Plan when she first started school and mainstreamed her.  Speech was her main issue so she worked with a speech therapist and an occupational therapist on physical skills.  The schools have been wonderful.  I was always busy trying to keep her mind engaged. I just believe it is important to keep kids with autism stimulated.  I would read stories to her and talk to her a lot.

Now she is 12 and she is a really good student and gets all “A’s.”  She is very good in Math and it boggles my mind because I am not very good at it.  I am very proud of her.  The hard thing for me now is to see her alone and not doing things with a lot of friends, but then she is very comfortable alone.  I am more of a social butterfly and so I struggle more with her aloneness than she does.

She and her brother get along well, but sometimes she says things that aren’t appropriate and it is frustrating for him.  I hope he feels that I have given him lots of attention even though she has special needs.  I would be heartbroken if I thought he didn’t feel that way. I am not totally comfortable either when we are in social situations because I can’t anticipate what she might do or say in each different situation.  I just want her to be accepted.  I have never used her Autism as an excuse and have always told that to her teachers and our family.

She was involved in the BSU Prism project for special needs kids and she has a beautiful voice.  She sang a solo.  She is such a good student but has difficulty with reading comprehension, and I worry about that as she gets older.  I am also a little worried because lately she zoned out on a weekend when she was very stressed.  I don’t know what that means at this point.  I want to read more on the brain so I can understand what is going on. As she is getting older, I am trying to find a balance between letting her be herself and yet helping her do things that will keep her engaged and accepted.

I am afraid her brain will revert back if I don’t keep her involved.

I volunteered to tell our story because I knew I wanted to help others as soon as I found out she had a type of autism.  I have kept all my materials and am always willing to share.  I would tell other parents to get involved with a support group of other parents because that helped when she was younger.  I think it is very important to stay involved and to learn as much as you can.  You also have to be proactive with doctors so that they really understand what is going on.

I am lucky because my present husband treats her as his own and is understanding, and my mom is the one I call when I get frustrated.  She has always been there for me.  At the present, I wish there was a group for parents of teens because it is harder to help them and yet give them space to be themselves.

As she gets older, I want to continue learning about the brain and find some kind of work related to that.

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As told to Pat Bennett by Kim McWhirt.

Pat Bennett is a retired nurse who taught at the Anderson University School of Nursing for over 25 years.  She is presently a parish nurse for College Avenue United Methodist Church and volunteers with several agencies who work with poverty and persons with brain disorders.

If you connected with Kim’s story, you can contact her at kimss31@hotmail.com