The Diagnosis that Changed Everything

For you created my inmost being; you knit me together in my mother’s womb.
— Psalm 139:13

A while back I asked my cousin, Angela, to share her story of the diagnose that literally shook her world.  A fear became a reality.  Yet God equipped her and her alone to be the mother of a child diagnosed with autism.  She handles it with such grace and patience.  And God knew Sydney before she was ever formed in the womb and the life that He alone had planned for her. He knew her life would be filled with challenges, many of which she wouldn't understand.  Yet those challenges are preparing her to change the world.  A world that desperately needs more people with her unconditional love and simplicity of her outlook on life.  Our culture is trying to change those diagnosed with autism to think and act like them.  When in all actuality, I think it should be the complete opposite.  Our culture is the one that needs to change to think and act with the love, compassion, and aptitude of those with special needs.

I often tell Angela that Sydney and Ethan are kindred spirits.  They have unique and special stories to share with the world.  One day God will use them both in a mighty way.  Ethan is typically the only boy grandchild in a room with five (and growing) girls.  He gets a lot of attention from them - sometimes that's fun and sometimes it will be aggravating as he gets older and they pick on him.  But the one he gravitates toward is Sydney.  He processes senses in a similar way with a sensitivity to textures, temperatures, sounds, crowds.  We often find the two of them retreated together in a quiet room reading or watching TV.  But the one thing that tugs at my heart the most is he always wants to pray for Sydney.  His most recent prayer was for her to be brave.  I know that he doesn't fully comprehend the magnitude of that prayer.  But I do know that God put that boldly in his little 3 year old heart for his Sydney and one day he will know why.  

Ethan retreated from his own birthday party to play with Sydney who went upstairs alone to escape the crowd.

Ethan retreated from his own birthday party to play with Sydney who went upstairs alone to escape the crowd.

Please join us in welcoming Angela to our blog today and we hope that her story is an encouragement to you whether you are also a mom of someone with special needs or not.  We all have challenges as moms and can be a wonderful encouragement to those around us by just simply sharing our stories.  We are never alone.

  The Diagnosis that Changed Everything

January 4, 2008 is the official day that started this sometimes overwhelming, yet beautiful and inspirational new life. Let me start at the beginning. I married my best friend in November of 1999. We had our first daughter, Caitlyn, in June of 2002. She was a healthy big baby weighing 9 lbs 2 oz and was 2 weeks early. She was the love of my life. I never knew I could love another person as much as I love her. She hit every milestone and by the time she was 1 1/2 she was having small conversations with anyone and everyone she could. Two years and 5 months later, my second daughter, Sydney, was born. Since my first child was an emergency c-section, I had to schedule a c-section for Sydney. She was a week early, born the day before Thanksgiving. She too was a large baby weighing 9 lbs 4.5 oz. She was a very easy baby like her sister, except they both HATED the car. If I put either of my girls in the car as a baby they would scream bloody murder. Unlike her sister, she didn't have colic, so that was a huge relief. As a baby she was easily startled and she was scared of her daddy for some reason. Even if he was just sitting and holding her she would scream, and if he smiled at her she would cry. She was chunky just like her sister so it took both of them a little more work to get moving, but they both had hit their sitting and crawling milestones. At 4 months old she would laugh at me and her sister and loved to look at what we were doing. By 6 months she would get so excited whenever her sister came around her. Her favorite thing to do was to be in her johnny jumper and bounce and bounce. If I put a mirror where she could watch herself, she would giggle over and over. Around 9 months she met my dad who had a beard. She was so fascinated and would stare and run her hands through it. She hated sand at the beach but would live in the pool floating around. She drank from a sippy cup around this age and was eating just a few solid foods with her baby food. At this point, I never had any indication that anything was wrong. She seemed like any other healthy baby. 

The first real difference I noticed with Sydney was a profound frustration when she couldn't do something. I remember sitting on the floor with her and we were stacking the 2 inch wooden blocks. She was about 9 months old. She was happy each time she could put one block on top of the other, but if they fell down she started crying hysterically and wouldn't want to play anymore. I discussed this with my pediatrician who wasn't able to give me any more ways to handle that I hadn't already tried. I thought, well she's just really determined to do everything just right. Determined became my word after my grandmother insisted I not use stubborn. By 11 months she had only said "mama" and "dada" with a lot of babbling. She would mostly crawl to a place she could pull up on and stand up to walk while holding on. She loved watching Dora the Explorer. She was so intent and focused when it was on. By her first birthday she really had a disdain for men, including her daddy. I thought it may be their deep voices that possibly scared her. We could never figure it out. She would give any man that spoke to her a very mean look. She was taking about 3-5 steps at this age. She seemed to only say "dada" over and over but it never seemed like she was actually calling him. Almost as though she just liked the sound of it. She was very active, pulling up on things and maneuvering around. Still, nothing seemed too out of the ordinary. She made eye contact, I've even gone back to watch home videos to make sure. She was just a very particular baby who seemed sensitive. She was so content when she and I cuddled or when I was holding her. She had finally warmed up to her daddy and loved him to tickle her. She was full on walking at 13 months and hated shoes and socks, which was a problem since it was winter-time. Again, not alarming as I knew several kids who didn't like shoes and I'm always fiddling with my socks to make sure they are tight and straight. She was very picky with food, but I had heard a lot of children were so that didn't concern me much either. I had mentioned a couple of these things to her doctor at her check up, but no red flags went up. I was told that Caitlyn was just advanced and Sydney was on target. "Don't compare them," I was told. I tried really hard not to. She and Caitlyn would play together some, but she would get so frustrated and start throwing a fit that it didn't last long.

By 16 months she was saying more words like "all clean, all done, milk, juice" and a few more. At this point  I had been used to Caitlyn talking in short real sentences so of course I was told again by family and doctors that I was comparing. They suggested that her sister does all the talking for her so she only speaks when she needs something, not uncommon in many younger siblings. It sounded right, she really only talked to me when she needed something or when I asked her to repeat. She was a master of repeating. Anything I asked her to say she would. She loved the song Old MacDonald, but would only repeat the "e-i-e-i-o" part. It would make her so happy. She would clap and get so excited. She had a lot of expression in her face. She always watched people's expressions intently and was very concerned for them if they were sad, which would upset her terribly. She was still a very picky eater and would only eat table food like bananas, crackers, and chicken. She didn't want to give up her baby food. Her doctor told me to cut out all baby food and that will make her start eating table food. 

By one and a half she had a temper if something was taken away from her. Typical toddler behavior, right? Still no red flags, just head tilting wonder. She was saying more words on her own at this point like shoe, flower, balloon, basically things she liked. She wouldn't say frog, but would say "ribbit" for a frog. She was very interactive with her father and I. She would run to us and make us fall back while holding her. However, she still didn't play with her sister much. A little here and there, but mostly she wanted to interact with us. She loved her books! I would watch her just sit for hours looking at all the pictures in her book and she loved me to read to her.

By the time she was 2 she was counting to 10, knew all her letters and recognized numbers 1-9. In walmart she would yell out the numbers that were on the big price signs. One of the main things I noticed was she would hold things certain ways. In particular, her My Little Ponies were always held by the front leg closest to her body. One in both hands. Also, she always held those large Mega Lego blocks with her pointer finger in the center hole. By her 3rd birthday she still wasn't talking in sentences or conversations so at her check up I had two lists; a list of concerns and a list of things I wasn't concerned with. I couldn't understand why she did some things and not others. Why some things bothered her and not others. It was confusing to me. I had people tell me their child had issues with one or two of the same things so not to worry. The pediatrician recommended I have her evaluated by a speech therapist. So as soon as I got home that day I called the therapy center and this sweet, caring voice on the other end starts asking me tons of questions. This confused me a bit because she wasn't really asking about speech, but still I had no idea of what I was going to be told. She recommended that it's always best to get a psychological evaluation just to rule anything else out. Ahh, key words there!

On January 4th, I was told my precious, strong willed (oops, determined), passionate, ornery, loving little girl had Autism. I was in shock to say the least! The only exposure I had to Autism was the movie Rainman. Never once did that diagnosis cross my mind. I knew nothing about it. I knew nothing of what that meant for my little girl or my family. Prior to our appointment I had been told by someone, "don't let them label her." I thought that was so odd. What did that even mean?? Now I know. But how could I not let her be labeled? If you are a heart patient or diabetic you are labeled. Why was that a bad thing? I had no intention of worrying about a label as I sat in that office listening to these words coming from a stranger. I needed to listen. I needed to understand so I could help my baby. I could care less about a label. For me, it was an answer. It was an acknowledgement of the concerns I had for 2 years. I knew in my heart something was off. I just never imagined it was Autism. "But she talks," "but she plays with us and loves on us." These are the words I heard coming out of my mouth to the psychologist. They just kept coming as though I was going to change her diagnosis. That's when it hit me, I had always described her as being in her own world. She seemed to like being by herself unless she needed something. It was like she didn't need us except to fix her food or change her. Sure she was affectionate with me and played with me, but only for a few minutes or if I put myself in her world.

He explained that Autism falls under and umbrella. There are so many different ranges and each person with Autism is different than the next. He said we all have "autistic" qualities about us. Maybe you don't like the way certain clothes feel, or certain textures of food. Some people don't like to touch sand and others don't like to tough slime. It's when you have a multitude of sensory issues along with socializing issues. She was content to play by herself. She never sought out other kids. She did however, try to spend most of her time with adults or older teenagers. She is still that way, although it is getting better. She fell into the mild category because she could talk.

Next came the thoughts and questions of will she ever get married? Will she ever be able to live on her own? He couldn't answer that. He said there is no way to tell. In that moment, I, for a brief second, had sadness. I won't lie. All the dreams I had for her were gone. We had a new reality. It only lasted a second though. All I cared about was getting her the help she needed. This began our therapy sessions. Speech therapy, occupational therapy and at home I did my own research for ABA (applied behavioral analysis) therapy.

It's been 6 1/2 years now since our life changed. It's been a very long and sometimes exhausting road, but I would not change one second of it. She has taught me more in these 6 years than I learned in my previous 29. There are days where I would wonder what it would be like to have what my friends have, two or more children that play together and interact together without it being forced. I never wanted an only child because I was one and it was so lonely to me. Now I have two only children. Sure they play a little and it's gotten better with a lot of hard work. But it's not easy and it doesn't come natural to either of my girls. Caitlyn has been fantastic and a patient big sister, but she doesn't know what it is like to have a sibling like her friends do. However, Caitlyn has learned what many children have not, and that is to be accepting and patient and caring to those who are different. Like I said, I wouldn't change the diagnosis for anything. I love everything about her. She has a spunk about her that is captivating. She is loving and caring. She has come a long way. She didn't get potty trained until she was 7 years old. Only recently has she been able to wear underwear to bed all night without wetting the bed. That has been a tough road. I do count my blessings though! She has always been able to talk. I know many children out there can't.

She still has a very difficult time telling me if something is wrong with her or understanding certain things which is hard on me sometimes. She doesn't understand dangerous situations like parking lots. She will walk right out in front of a car if I'm not holding onto her and things like that. Even though she will be 10 in a few months, I will have to hold her close to me in stores or she'll end up wandering off. People often say to me "oh my child will wander off too" or "it's a fight to get my child to do homework as well," but what they don't realize is I deal with all the different fights and issues on a daily basis. Not just one or two of them. And trying to explain to her why she has to do homework is beyond difficult. That's what makes it exhausting. It's like having all a toddler's behavior in a 9-10 year old's body. I can't just say "go brush your teeth or get in the shower" because she doesn't know how to do any of that on her own. We get more stares now that she's older as well. Kids especially, stare. It doesn't seem to bother Sydney like it does me. She is just content and really happy and I couldn't ask for anything more.

Thank you Angela for sharing your story. We know it will be a wonderful encouragement to many other moms. May God continue to bless you and your precious family.

Much love, Jenny and Courtney