Many who know Sarah now don’t know all that she went through as a child to get where she is today. I have been talking a lot about where she is now and the events that have transpired over the last year. Since I wrote my post yesterday I have confirmed some suspicions I have had for years and wanted to share it with you. I thought it also might help to have some detailed background as it might be helpful to someone who comes across this blog.
Sarah was born full-term on 9/10/87 weighing 5 pounds 10 ounces. That was average for me, though small for many. During my pregnancy there was an issue with ultrasounds, every ultrasound said she was due Oct 15, but I saw my doctor at 2 weeks gestation, so we knew that was wrong, just not why. That mystery is still unanswered.
Sarah did fine for the first three months. She rolled over on time, smiled on time and seemed normal. She had her shots at 2 and 4 months like babies are supposed to. At 6 months she didn’t sit. She was like a floppy doll with no upper body strength. Then a friend moved in next door with a baby 2 days older than Sarah. The differences were so obvious. I will never forget the day I took Sarah in for her 6 month check-up. The doctor told me her head wasn’t growing properly and that she was micro-cephalic (that is a big word meaning she had a small head). We had to wait 2 months to see a pediatric neurologist who then told us that Sarah would never walk, talk or do anything and that we should just do ourselves a favor and institutionalize her. During this time she also had her first seizure. A month after this we realized she was probably deaf.
There were no answers coming from any doctor. They didn’t give us a diagnosis or prognosis other than what the neurologist said. Right before her first birthday we moved to Dallas. At Texas Scottish Rites Hospital we saw the first doctor that gave us any hope. I will never forget that day either. He looked me in the eyes and said, “I can’t give you any medical reason to back this up, but I believe Sarah will do things. Let her try what she wants and don’t give up on her. I see something in her eyes that tells me she’s there.” That’s all this mamma needed. At that time we were trying to get her a special chair called a freedom seat because she couldn’t sit. Even though Sarah couldn’t crawl, she could get around really well though. She rolled everywhere and she was quick. At 18 months she sat for the first time and we canceled the freedom seat. After that came scooting. She never crawled because she had a right side semi-paresis. Once she could get around she would pull herself up into a chair by grabbing the rungs in the back and pulling herself into it. She was very strong in her good arm. Things continued like that for a couple of years.
During this time of her life Sarah also had a lot of choking/gagging issues. Usually the hardest foods to eat were things like mashed potatoes. At two we had the diagnosis that she was profoundly deaf. In other words a jet could be behind her and she wouldn’t hear it. A very small percentage of people with hearing loss are that deaf.
As she grew she had several things that were different that she did that I didn’t have any explanation for. Because she wasn’t walking she was in diapers still. Every day, after lunch, she would dirty her diaper and then proceed to smear it’s contents all over her bed, her wall and anything else you she could smear it on. Sorry if this is TMI, it’s just how things were. You might say to yourself, wait her out. We tried, didn’t work. I tried duct taping her diaper on. I tried everything I could think of, all to no avail. This finally stopped when she was potty trained and never has someone been so happy for potty training!
She is the only child I had who would climb out of her bed. Long before she could walk, she would work her way out of the baby bed. After a while we gave up and put a mattress on the floor for her. Then the battle of staying in bed began. Oh, what a battle that was. When she was 3, before she could walk, I would put her to bed, put two gates in front of her door, and then a small dresser in the hall in front of that. She would lie on her back and push with her legs until she has moved the gate and the dresser enough that she could escape, and then off she would scoot. I don’t know how many times a night we did this.
She loved going to church, but wasn’t really social when she was there. At home, church, playground, everywhere she pretty much stayed to herself. You could interact with her for a short while but not for very long. She loved having her toys/dolls but she was not really one to cuddle with them or play with them a lot. She was very OCD about them though and wanted them in their certain spots.
Sarah finally began walking at 4. Then she took off! We jokingly nicknamed her “Stopper”, because we were always yelling ahead to people in the halls at church to, “STOP HER!” as she ran off.
Sarah has been diagnosed with several issues. She is classified as having a seizure disorder, cerebral palsy, an anxiety disorder, developmental delay and she is deaf. I asked one of the many doctors for a “name” for what she had. Her response was, “Does it really matter?” We could have done lots of testing, but it wouldn’t have changed anything. In the back of my mind I always wondered if she might have autism. Just because of how anti-social she is and how she doesn’t like to interact a lot. Recently a friend spent some time with us one evening and she suggested that Sarah might have autism. She has a son who is a high functioning autistic so she recognizes the signs.
I have been reading the book, Breaking the Vicious Cycle, because we are putting Sarah on that diet(referred to as the SCD diet). It has helped children with emotional issues which is the reason I was putting Sarah on it. As I read and researched more online I began to see Sarah in much of what I was reading. Since her breakdown she has begun doing odd motions/movements and making odd sounds that she didn’t make before. Her behavior and actions drastically changed. Today she is nothing like before. Though we get glimpses of “the old Sarah”. I came across this video last night and it is amazing how much like Sarah this is. I found out that those odd mannerisms, movements and sounds had a name, it’s called stimming.
It may be true that having a diagnosis for what she has doesn’t really change anything, but it helps me greatly to understand what is going on better. We started the diet about a week and a half ago and we are already seeing great changes. When I got up today I was surprised at how different she looked. The Lord is in control of her progress and we are trusting in Him as we go through this daily. We are thankful that this diet may help her. Our hope is once she works through the stress and anxiety that she is working through the stimming will diminish.
Please share any thoughts or experience you may have. I’d love to have input if you have encouragement to offer.