Friday, November 6, 2015

Somewhere on the Spectrum. Written by Holly Noel

Somewhere on the Spectrum

Hi, my name is Holly, my son will be 14 in Nov 2015. He is on the autism spectrum but didn't get officially diagnosed until he was 12. Officially, in our case, means that the right person from our insurance company diagnosed him.

My oldest sister had two boys and 25 years and 15 nieces later, (I have five siblings), I had a boy. When he was born I already had an 8 year old and a five year old , both girls. Will was a good baby and when he got fussy we could lay him where he could see the ceiling fan and he stopped fussing. As he grew ,we noticed that he never pointed at things and was quiet and liked to play by himself. He liked matchbox cars but didn't play with them like you would expect. Instead he would like them all up and they would be color coded. He didn't want you to move any of them at all. Remember it had been 25 years since we had a boy in the family so we just thought it was a quirky boy thing. I was happy he knew his colors lol.  His favorite thing was playing cards and he would line them up all over the house, end to end. Again, quirky boy thing. Thought he was making tracks for cars.

He never ate much but when he was 3 1/2 -4 , he stopped eating anything. Literally! My mother told me that he would eat when he got hungry, he didn't. I got some supplemental drinks for him because I was worried. We found out his tonsils were huge and almost touching, that's why he wouldn't eat. They took his tonsils out and he started eating a little bit. He never did eat more than a handful of different things. Must be because of all that room in his throat, right?

He would play barbies and house with his sisters for about ten minutes then start lining up his cards. He had lots of cards. He would run around and around in a circle and sometimes sing a few words from a song or a movie, over and over and over..... I would sometimes say that I thought he had autism and whoever I said it to would tell me I was nuts. He could talk and only flapped his hands when he got excited. We didn't know much about autism and had no idea that it was a spectrum! We couldn't go to any store alone with him because someone Always had to take him back to the car . He would come through the doors and after a few minutes, he would start screaming and getting violent. We thought he was just being a brat and didn't want to shop. The guilt I feel from thinking that is horrible. I didn't know he was in sensory pain overload. He Loved being in the pool but hated a bath. I later found out that he had to have the water almost cold or it was too hot for him.  

When he started school, I had to talk to his teachers to find anything out about his day. He never would tell me anything. He was hard to understand when he talked and my girls and I were the only ones that usually understood him. His dad did sometimes. I was told that we needed to stop doing for him and make him say the words. My niece started going to school with him and I would find out from her about his day. I also found out that the teacher was mean and always got mad at him and made him stay in detention during recesses. I talked to the teacher and she said he doesn't turn in homework or doesn't listen in class.

I saw something on TV or a book about autism having a spectrum . I started reading and it was describing my son to a t. He was in fourth grade at the time and I talked to his teacher about it. She could see what I was saying but didn't excuse his behavior. Our school system is very small town, almost 200 kids in high and grade school total! When he got off the bus and walked in the house all hell broke loose. He had a violent meltdown Every day when he got home. My girls would shut themselves up in there rooms and he would attack me or kick holes in the wall. I talked to his Dr. about it and he couldn't diagnose autism so he sent us to a psychiatrist. They sent me to SIU which is about an hour from our home and the closest place that diagnoses autism. A few years ago they apparently only diagnosed classic autism. They told us he just needed speech therapy. I was so angry when we left there. When I saw his psychiatrist , he said he couldn't do the diagnosis but he knew he was on the spectrum. Insurance only listened to SIU.

My son's anxieties and fears and meltdowns were horrible. They put him on Meds and they helped some. The school was no help at all, no matter how many meetings I had with them. We ended up pulling him out of school and homeschooling. I would give anything to have done that long before. I read everything I could about ASD and I felt so alone.

My oldest sister and I are best friends and the only one he is ok with staying the night. I asked my girls about playing with Will and did they notice anything different then other boys. They said he was very literal and had No imagination. My sister and I tried to help him with that because her granddaughter (who lived with her and was his age), was very dramatic and imaginative. She would get very frustrated because he had no imagination. We told him to pretend he was a soldier which he loved. We told him that pretending was believing you really were a soldier. Later that evening my daughter came and got me and said he was roaring and throwing chairs. When he finally calmed and ,as usual, fell asleep, they said he was playing army and my niece wanted to play fashion show. Well, long story short, there are No fashion shows in the army!

He needed more therapies but insurance wouldn't allow it without official diagnosis. His Dr. sent us to Vanderbilt Children's Hospital Autism Wing and at 12 years old he finally got an autism diagnosis. It was a three hour drive, one way. Car rides make his head hurt and his stomach hurt. We stayed in a hotel and he got to be in the pool most of the time so it was ok. When we finally got him into OT and BA and Speech, he didn't get a lot of help. We still had to drive an hour to any of them and again, he doesn't like car rides. They said he should have had therapies when he was little and they didn't really know how to help a pre- teen. He is almost 14 now and puberty and autism is horrible for my little man.

My sister is very close to my kids and knows as much about our daily life as she can without living it. She had never actually been there when he had a bad meltdown until one day at her house. When it was over and we had gone home, she called me crying and said she knew about the meltdowns but you just couldn't imagine it until you actually saw one. She cried for him and for us. Since then she has seen more and sees when it's over that he is soaked from sweat and usually falls asleep. The week before during and after a full moon are horrible. Trust me, it totally affects him.

Honestly, I couldn't have gotten through any of this without sites like this. I live in the country and the small town where the school is, doesn't have a child on the spectrum that they admit to. Trust me, everyone knows everyone's business. When I read what other families were going through that mimicked mine, I wanted to yell, Hallelujah!! I cannot put into words how much y'all have helped me. I thank you from the bottom of my heart. Knowing what I know now would have helped my son and my family so much if we had known that autism had a spectrum! It is imperative to spread autism awareness. I don't know if this is what you wanted but it was therapeutic to write lol. I could write so much more but figured this was long enough.

Please pray for us as we go through our journey. His therapy now consists of things y'all try and write about and things my niece sends me about her son's therapies. Same age but they live in Springfield ,Illinois and have awesome therapists. I will stop writing now lol. (((Hugs))) and Prayers.

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