Friday, April 22, 2016

Somewhere on the Spectrum. Written by Kimberly Miller

Somewhere on the Spectrum

I think I knew there was something different about my son from the moment he was born. It seems kind of odd to say that, but thinking back it’s true. My son was born via emergency c section after more than 30 hours of labor. My blood pressure was dropping and his heart rate was, so there was no more time to wait. When he was born I heard the tiniest little sound that sounded like a kitten mewing. It’s funny because I wasn’t sure at first if that was him or not, but it was. He was a quiet baby in the beginning. All snuggly. I remember I had him under the covers with me and the nurse came and jumped when she moved the blankets to take my blood pressure. He wasn’t making a sound. He was happy to be snuggled up with me. I remember the nurses telling me I was going to to spoil him or he was going to get his days and nights confused because I just let him sleep all the time and because I held him all the time.  When we got home he slept a lot, as newborns do. When he was awake he wanted to be held. I didn’t mind at all. Now that I know what I know, I should have savored those sleepy days a bit more. 

When he was 3 months old, we volunteered to babysit for my in laws, they were caring for a granddaughter whose mother had died as well as my mother in law’s brother with Down Syndrome. They didn’t get any alone time at all, ever. So my husband, both boys and I hung out at their house so they could go to some church event. We were driving back home in the middle of the night. The baby was snoozing away on the trip home. There was an accident on the freeway in front of us, so my husband stopped to check on the people and see if the police were needed. Though we were not involved in anyway and there had been no noise that was loud enough to startle him, the baby started crying. It was like someone had flipped a switch. I am sure it had nothing to do with the events of the day, but this is the way that it happened. From that day on my son slept very little. He cried when he was put down and he could stay awake until the wee hours. He would fight sleep at all costs. Sometimes I would get him to sleep and he wouldn’t be asleep for an hour before he would be screaming bloody murder, like he was in pain or scared. He was less than 6 months old. I asked the doctor about it. She said he was too young for night terrors and not to worry about it, he would outgrow it by two. 

He was walking by 9 months though he had just barely learned to sit up on his own (I remember he was older than 6 months because my other son sat unassisted for the first time at 6 months and my younger son did not, it was more like 7 months) and was barely crawling (around 5-6 months). It was like he had no time for crawling he needed to get moving already. My older son had pulled up on furniture and would walk as long as he had something to hold on to, but didn’t actually take his first steps alone until shortly after his first birthday. I was surprised when my baby took off before his first birthday. He did the babbling thing and everything seemed on track in that department. 

We visited my husband’s family often and they were always feeding him table food. I remember his grandparents giving him clam chowder at 4 months of age.  I was furious, but felt compelled to keep it to myself. They meant well after all. He never was one for meats, even baby food meat he refused. He would gnaw on a chicken leg, but always the bone end, so maybe it was more about teething than hunger. I remember he always put food in his drink and I remember my husband would fuss at him about it. I would tell him just let him do it. It’s his drink. He had to drink from an open cup. He didn’t like sippy cups and was always taking the lids off of them. 

The next obstacle was keeping him in or out of rooms. He was either trying to get out the front door or locking himself in a room. We got those bulb things you put on the doorknobs but he figured out how to bypass those in less than 3 days at 18 months old. The stove lock was a no go either. Though each was good for keeping the adults at bay, the kiddo could figure them out lickety split. It was about this time that I began to consider more seriously that he was different.  

He still didn’t sleep much but would be raring to go after just a few hours to recharge. I, on the other hand was exhausted. I couldn’t sit down for a minute because he was always into something. Still the doctor waved away my concerns. I remember around 3 I had snuck in the shower really fast when I thought he was sleeping. I got out and tried to go to my room to get dressed but it was locked. I was knocking and calling his name trying to get him to open the door, finally it dawned on me to check the front door. We had 5 locks on the front door by this time and he had managed to get them all open and was gone. I kicked in the bedroom door, got dressed and ran through the apartment complex screaming his name. By the time I got to the front (it was a small complex too!) he was coming back from down the street on his bike. I chunked his bike and drug him back to the apartment screaming and crying. I was at my wits end and I had no one to turn to other than his doctor who kept blowing me off. 

My husband and I had split up by this time and my older son was staying with my parents until I could get my life together. When he was 4, I was in the bedroom and I heard a crash from the kitchen. I went to inspect and my son was pinned between the sink and the stove he had somehow managed to pull over onto himself. I threw the stove off him. He wasn’t even hurt. He suffered no more than a small red mark on his back. He still talked in 2 and 3 word sentences at this age and often you couldn’t understand what he was saying. We would joke that he was speaking a foreign language. We started potty training around 2 or 21/2. He wasn’t fully potty trained until 6, just before school started.

On the first day of school, I  mentioned to the teacher, that I thought something was different about him, but she too blew me off. “He’s just a boy!” I cannot tell you how I hate this sentence. The notes from the teacher started coming home immediately and by the end of the school year the teacher had changed her tune. I think you were right was her new reply. I had gotten a new pediatrician. He was originally diagnosed with ADHD. The meds didn’t really seem to help. Finally she referred me. I started taking him to a place that offered psychiatric services and counseling. We went through so many meds trying to find what would work for him. They would help for a week or so then nothing. At the same time we were doing one on one therapy as well. The therapist recommended him for autism testing.

It’s funny how things work out. I had wanted to get him tested but the insurance wouldn’t cover it and paying for it  myself was not even an option. It would have taken me years to pay for it. The next time we went for therapy I think told the therapist that I had lost my job. She was like that’s great, now you can get him tested. Since I was unemployed he qualified for medicaid and that would pay for the testing. So there was the silver lining.

My son got his Autism diagnosis (Aspergers) in the summer of 2011 just before his 8th birthday. When I told his father his reply was,”Well are you happy now? You wanted something to be wrong with him!” My twin sister who also has a son on the spectrum (he is 7 months older) told me I was sick and should be ashamed of myself. There was nothing wrong with my son and I needed to see a doctor not him. Her reasoning? My son could ride a bike. “He’s too nimble to be autistic.” I was in this all alone, but that’s ok, because I felt alone my entire life.  

As I was filling out all of the forms for the testing facility and then again for the school who was still dragging their feet about testing him, I could see myself in each of those answers. I think I cried. The more I read the more I cried because it was like I was finally finding myself in finding answers for my son. Life had always been so hard for me. I couldn’t understand why. My whole life was chaotic and, now that I know better, the last place someone on the spectrum needed to be. I hid in my room and watched tv all the time. I was totally obsessed. I freaked out if I missed an episode. I remember that was the punishment my mom used. She took away the tv from me. My grandmother gave me a radio that played tv shows also. So when my mom would take away the tv I would lock myself in my room and listen to the show on the radio. When I went to camp for a week in 5th grade, I thought I was going to die without my shows for a whole week. 

On an everyday basis I counted everything and worried about everything. When I saw a book left on the bleachers, I would create an entire scenario in my head of what would happen to the student including what his excuse would be and what his teacher would say. I chewed the inside of my cheeks and my lips always had the imprint of my teeth on the inside of them. When I went to the grocery store I couldn’t step on the colored squares on the tile or the lines. At night I couldn’t go to sleep so I always made up stories in  my head. Every night I would pick up where I left off until I got bored or came up with something new to think about. 

To say I was clumsy is an understatement, my parents sometimes called me Grace. I would get so excited about Christmas I would shake all over even when I was 10. I would beg to go to my grandmother’s and cry the entire way there because I wanted to go back home. I was such a mess. 

I can’t remember having any friends until 6th grade. I knew kids in elementary school, but no one was really my friend. There were girls I liked, but mostly I didn’t fit in with them. I remember in 5th grade, as a reward, our 5th grade teacher let all of the girls with perfect attendance spend the night with her. There were no more than 5 us. The other girls were popular girls I cannot even remember them really talking to me. I remember we ate pizza and watched Excalibur. I had no idea who the people were in the movie and it was actually a bit scary for me. 

I had a voracious appetite for books though and carried one around with me every day. At 13 I began reading grown up books. I don’t mean like x rated or anything, but grown up topics. The stories were about fictional police officers, but still not appropriate for 13 year olds. Especially immature 13 year olds. I can say though that I did have two friends that I hung out with often from about 7th or 8th grade on. With all of the reading I have done and still do, I see why Aspergers is so easily missed in girls. We can definitely hide it better. It’s not as unusual for girls to be shy or read a lot and not be part of a group. Inside though things were a lot different. I didn’t fit in. I didn’t wear make up and do my hair. I wasn’t into clothes or shoes or trends. I wore a t-shirt and jeans all the time. By middle school, when I was finally allowed to grow it out, my hair was always in a pony tail. My friends and even my sisters always wanted to do make overs, but I could never get into all of that. I even carried a wallet because I couldn’t keep up with a purse and really saw no point in carrying one when I had nothing to put in it. I was picked on everyday of my life from the time I started school. I still get picked on now, but it’s mostly well intentioned people that aren’t specifically trying to be mean. 

When my husband left I started going to therapy because I just couldn’t get over it. I cried all of the time and I even ended up in the ER because I took too many pills. I wasn’t intentionally trying to kill myself, but I was trying to stop the pain and trying to sleep. I took Tylenol and Benadryl. The doctor said she did not think I was suicidal, but she did think I should talk to someone. Therapy helped to some degree. I was able to talk about a variety of things so that helped. She also helped me understand myself a bit more. She recommended a book called The Highly Sensitive Person. It explained a lot and that felt good. I felt less weird.

I have tried my best to give my children more than I had. I don’t mean material possessions. I mean more of my time more of my love and more understanding. I always felt out of place and like no one understood me. Life seemed to be so much more difficult for me. Everything hurt me so much more than others. I was always told I was too loud or too happy. I always felt criticized and like I wasn’t good enough. There were often times I would beg God to die or beg him to tell me what I did wrong and why he hated me so much. More than anything else I wanted my children not to experience the same. 

When I got my younger son’s diagnosis I was glad to finally have some answers, but I also felt a tremendous amount of guilt because I had already been through everything he was going through, so I passed this on to him. Had I known, I am not sure that I would have had kids. Life has been brutal for me and the thought that my child is going through the same hurts me deeply. For the most part is a happy kid, but school is hellacious. Kids are not nice a lot of time. I am hoping that when he is done with school and not having to deal with all of that he will be a lot happier. He is not as emotional as I am. I do comfort myself with the fact that he has someone that understands him and speaks up for him. Someone who fights for him. I didn’t have that. So if nothing else, at least I am more equipped I guess than some others are.


Kimberly with her son. 



**If you want to share your story, please email me at grapejellyonpizza@gmail.com.  As always, join us daily at the GJOP FB page.  

No comments:

Post a Comment