My journey with 2 special kids : Samantha Sanders
Hi, My name is Samantha. I have 3 kids actually. One is an adult and he is what we call ‘neuro typical’ , but my other 2 babies are both autistic to some degree. What makes my life even more complicated is that they both have some serious health issues too.
Let’s start with a quick history of us! Ty is almost 17yrs old now. But when he was born he was very sick, he was expected to die, so we were going to let him , however he did not.The damage was already done, with the oxygen slowed to his brain for over 10 hours. Ty has severe autism and severe brain damage, he will always remain like a 6yr old child no matter how old he gets. When he was about 3 yrs old we put him in a special needs classroom in our state. We were so happy that maybe there was going to be some help , as parents with a diagnosis of autism, life can be scary and unpredictable. We had no idea how he was doing with his new school, the only thing we DID know was after a few months and many questions later, we knew our son was getting to be very angry. He would scream and cry when we dropped him off. But that didn’t seem to raise too many red flags as Ty never liked to be without us. We were his whole world, so we figured it was to be expected. After about 8 months of this bizarre attitude I questioned his special needs teacher , AGAIN. Only to be told , again, that he was doing great there was nothing to worry about. I saw one of the aids in the classroom returning to school and she had this very serious look on her face. She said ‘ Can we talk in private?’ Well obviously I thought we were just going to have a light conversation, but that didn’t happen on this spring day . What I heard made me so angry and so full of hate. I actually thought I could harm someone. She ended her conversation with me by saying ‘ You never heard any of that from me and I will deny it all’ , as a parent with a special needs child and too much trust , those are the last words you ever want to hear. What she told me was that all of my questioning to the teacher and to the school was making things worse on my son. My son was being abused by his special needs teacher and some aids in the classroom. The aid who told me could not afford to lose her job. My son was being ridiculed, made fun of, and treated with such disrespect., he was yelled at and made to do projects or he would be screamed at. When my son would sit there and do nothing and would eventually be locked in a closet that was in the classroom that held supplies, and he was in the dark and screaming like an animal. How dare anyone treat my baby this way? I went into the classroom and picked up my son and left, I cannot tell you how long I stood there or even reminded myself to just breathe, but it felt like an eternity. I never did let my precious boy go back into that classroom. The damage was already done. It explained so much. He eventually did calm back down but it took years, he was violent from how he was treated. Can you blame him? I never did. But I would be the one person who would always be by his side! Now that my son is nearly 17yrs old, you might wonder did any of that stay with him? Actually it did. He still sleeps with a night light in his room, he has too. That has never changed. But if you take him camping he needs to have a separate light so it can stay on all night. He is getting much nicer to women in general, I have spent years trying to get him to understand that not all women are bad. He still has trust issues. My boy has agreed to let me tell his story and we even work with some key senators that are trying to change laws so that maybe what happened to Ty will not happen to your child, or anyone else’s. Ty’s story was one of a hundred stories read on the senate floor and before the house of representatives , we are trying to change those laws so that all special needs kids and adults will have their rights not be infringed upon.
So that brings me to my next subject. An adult with autism. I am scared yes! What do i do with Ty once he is done with school? I have no idea. We have brought up group homes but with no trust , it will not be easy. So, Ty will remain at home til he is ready to change that. no pressure. He is always going to be my little man!!! Even though my little man is 6’4″!!! Then with his health problems, limited speech and writing abilities, he has no luck with the state helping find a job. So we are just one of those lucky families with more questions then answers. We do look for those answers, but I tell you once your cute little girl/boy is growing up that cuteness wears off , no one seems to care anymore (doctors, therapists,speicalists) It is as though there job is done, and you are now back to being in charge of your child, they have done all they can do. They usually have this seriousness about them, when they used to have a look of hope. When he was younger they would tell me about each new study, and its findings. New therapies that looked promising. But by the time he was about 14 yrs old. Most went away. He was all mine to do what I wanted. Yes, they still give us services if I ask, but they do treat me as if I am wasting their time when they could be giving that time to another child who will do better than my son. My journey through autism with this child, has not been easy for one moment.
I have a babygirl, well not so much a baby anymore! She is 12yrs now. Her name is Niki. When I was pregnant with her, I asked my doctor, what was the probability of this child coming out autistic? The doctor did let me know that it hardly ever happens, Ty was just a fluke. So go home and get ready for my new baby to arrive soon, and he was sure she would be fine. Now I can laugh at his stupidity! Or mine? We did not know she could be autistic. We did treat her like a regular normal child. So when she did things just like our son, I was paying attention. I brought it up to family and my husband, they all made me feel like I was just looking for problems. I really wasn’t, but since I was homeschooling Ty I was paying attention. I noticed little things. And then again when I would bring it up , family would tell me I was just trying to get attention. I was thinking to myself, what kind of attention did I get from the first autistic child? nothing good. So , in what way did this mean I was going to get good attention? In fact , I started to doubt myself. Some people made me feel so bad for suggesting this ,that I gave up on it. I watched my babygirl struggle and I never let the thought enter my head again. At least until she was 9 years old. I was sent to a neurologist for several reasons. He was a very kind older gentleman, and he asked very insightful questions.But by the end of our appointment , he asked a strange question ‘ Mrs. Bryant (I was married then) do you think your daughter is autistic or have you ever given it any thought?’ immediately I had tears in my eyes. Someone was seeing it too. I wasn’t crazy or seeking attention. I told him how I thought it for several years but that my then husband , thought i was just making it up. I told him about all the things I noticed for years. And how I felt like I failed her. I did. But this very kind doctor patted my shoulder and just let me know we were not the first ones to come to him with another autistic child in the same family and ignore it. He let me know that is was hard to face raising one and now we are facing two. Wow. I was blown away. I couldn’t breathe. I kept looking at my child. I felt so guilty, and not worthy of being her mother. I owed her an apology(she got one). She would, from here on out ,be taken care of and get services she needed. I would not fail her again, ever.
My story doesn’t end here. While my kids do have autism, and we deal with that dynamic each and everyday. We do however have to add in some serious health problems that both kids did wind up with. Both kids have Ehlers-Danlos syndrome, it is connective tissue disease. They have to have physical therapy each week, I am trained to do this for them 3-4 days a week. Yes it can be debilitatiing but managed. Both have thoracic kyphosis, hypotonia, with only one of them having scoliosis. One or the other have, some for both : pectus carniatum,epilepsy, chrondomalicia patella, severe hyper lordosis, osgood schlatter, face blindness, enuresis, sensory issues, selective mutism(both), Obsessive compulsive disorder (both), ADHD , ADD, Central auditory processing disorder(both),both have bad long and short term memory problems.Both have wheel chairs because of the Ehlers-Danlos. I have my hands full each and everyday.
My daily life, I have meds schedules, home school,my kids are not self sufficient so my day is geared towards helping them with the things they cannot do for themselves. With sensory issues they eat maybe 11 different things. So i have had to make lots of meals in my day so that all people in our home are fed more than this strict menu. i have to watch out for seizures from one child, while another one has trouble walking through the house. I have been living with unrealistic demands for quite sometime and no help from anyone, and yes it did take its toll on my almost non existent marriage. We didn’t work together, I did most of the care for the kids, with limited sleep for many years. I try to encourage Cindi that it will not last forever. Yet even as we speak my babygirl and babyboy go to bed at about 3am most mornings. But the difference is they know they have to stay in their beds, can have a small drink and a small snack. If you really need mommy wake her up. So far, so good. To be a single mom with more obstacles then i care to think about , is very tough. But I do it everyday. As long as my kids will get out of bed, so will I . If anyone would have the right to feel sorry for themselves and all that they go through , it would be my kids, yet they never do. Both so far are not past a 4th grade education. So homeschool has to be fun and as fresh as I can make it. Year after year, I give it my best. Their doctors tell me to keep up the good work. Which definitely helps keep me encouraged. Some of my very good friends have stayed by my side through the divorce too, and have been such an inspiration that I can carry on, no matter how the odds are stacked against us. I only hope through my story you will strengthen your marriage, and be there for your neurotypical kids!!! ( that was a special time too!) and definitely keep yourself healthy, and as rested as you can. I wish you luck on your own journey. I pray it will not be negative a situation as mine has been. If you would want to reach me for any questions or if i can be of further help please contact DogforDavid, or AutismDiary, as Cindi is a very good friend of mine, and I am always happy to help.
Good luck and best wishes on your journey, ~Samantha~
For more from the blog event
Autism: The Bigger Picture
please visit here. Thanks for reading! : )