These past few months have been very exhausting. Yes, I know what you are thinking: “You have three autistic children, you should be always exhausted!”.
I know, but in the last few months have been really hard. Our middle son, who is now eight years old, and who I would describe as the one who seems to portrait the most symptoms of classic autism, is having a very hard time coping with anything around him.
He seems to be extremely bothered by any sort of noise, he doesn’t want to do anything related to learning or playing and he seems to just want to walk up and down the house telling everyone else what to do or teasing them and laughing hysterically.
At first, I thought he was bored but as the time passed, we realized that his symptoms are not related to him being “Bored”. He goes out very often and we realized that more often he goes out, the harder it becomes for him to settle down when he comes back home. It is like we never took him out in the first place.
He also displays aggressive tendencies when things do not go the way he wants them to go. For example, today my youngest decided to go by the living room where he was. He moved the curtain to see outside and our middle son saw him and got very angry and agitated, ran towards him and started hitting him, just because his little brother touched the curtain. You can well imagine the chaos in the house when things like this happens. It is very frustrating mainly because his behavior is so unpredictable.
One day he can wake up in a great mood and the day can go quite okay but other days like today, he seems to wake up in some sort of “Mood” where he would start laughing for no reason and teasing and doing things he knows he is not supposed to do. The most interesting thing about his behavior is that when he does have the opportunity to bond with you and have that one on one interaction, he doesn’t want it..he just wants to continue teasing.
The thing is, teasing is not really a characteristic of autism. According to the Journal of Abnormal Child Psychology, Vol. 33, No. 1, February 2005, it stated that: “Teasing requires the ability to understand intention, nonliteral communication, pretense, and social context. Children with autism experience difficulty with such skills, and consequently, are expected to have difficulty with teasing”. It doesn’t seem to be the case with him, I could see in his body language that he seems to understand that he is expected not to do something but gets a kick out of our reaction when he does it. This also reminds me of the fact that every child with autism is different.
In recent weeks, we also had to do a few changes around the house in order to accommodate the needs of the kids. During lunch and dinner, our middle one has been teasing our oldest endlessly (Trying to kick him and laughing, throwing his napkin on him, teasing the little one, etc). The biggest issue is the fact that because we have three children in the spectrum, their reaction to his teasing is never ignoring him but all the opposite.
Our oldest gets very angry and our youngest starts screaming and crying so we had no choice but to get a separate table for our middle one so he can eat by himself and our oldest and youngest can eat in another table in relatively peace. My husband and I hardly eat at the table anymore (We eat late at night when everybody is asleep) because it is the only time we can actually enjoy a meal. And yes, everyone likes to eat together as a family but our family dynamics are a little different.
Sincerely, there are times I feel like I am losing my mind so I try to relax at night, watch a movie that makes me laugh, eat something I like or read something inspirational”¦anything but feel sorry for myself or get caught in depression. I know that no matter what, my kids are NOT choosing to be the way they are, they have autism.
Today was one of those crazy days and I came across the Keli Thorsteinsson’s Story. Margret Ericsdottir is the mother of Keli, a severely autistic non-verbal boy. All the doctors and specialists who saw Keli told the mother that there was no hope for him, that he has the mind of a two year old and that he will need to be institutionalized. Thank goodness, his mother refused to accept it and went to a journey to try to unlock the mind of her son. She traveled across the US to look for the best specialists in autism and try to get answers to help her son. It is recorded in the HBO documentary called “A Mother’s Courage: Talking Back To Autism”, I haven’t seen it as yet. Margret heard there was a treatment in Texas that could help non-verbal autistic children learn how to communicate using a letter board and after a while, the unexpected happened: Keli started communicating.
The first three words her son wrote were: “I am real” and now he writes beautiful and inspirational poems that can help so many lives. Can you imagine being locked up in your body and in your mind you have all the words you want to say and you understand what is being said to you and yet you are unable to say them?
In a part of this documentary, Keli tells his father that the “Words just couldn’t come out from my mouth”. It is interesting because when our oldest son (Now fully verbal) was young and he was unable to speak, he told me that he could understand everything around him but for some reason the words just couldn’t come out even though he knew the words in his mind. Same exact thing Keli said.
Our oldest couldn’t speak when he was five or six years old and many times we wondered “Will he ever speak?” “Will he ever”¦” And he is now, 14 years old, fully verbal and saying words I cannot even spell! Talking about astronomy and science. If you ever meet him, you would never guess he didn’t talk until that age. I know it will be the same for my two other children.
We have been entrusted with a huge responsibility in this life as parents of three children in the spectrum. Just recently someone said to me “Did you ever ask God why?”. And I answered: I have, many times but deep inside I feel like I have been chosen for this work. And I am not saying this to sound inspirational or greater than any other parent or anything like that but really thinking back in my life, it almost seems like I have been given clues that it was going to happen”¦
When I was a little girl, I was the one always befriending the kids who nobody wanted to be friends with, not out of feeling sorry for them or anything like that but because I truly wanted them to feel good and have a friend. While most of my classmates were laughing and making cruel jokes about certain kids, I would be the one standing up for them and saying it is the wrong thing to do and I was just 5 or 6 years old. As the time passed, something incredibly odd started happening to me. I realized that a few people with special needs would try to befriend me but they wouldn’t do it with anybody else.
I recall a point in my life that I had a friend, who was visually impaired, another girl had a severe global development delay and a guy with down syndrome. One day, I just finished talking with one of them and I went to my bedroom. I laid down on my bed and asked my grandma: “Don’t you find it strange? “I wonder why is it that people with special needs seem to want to be my friend. I love them but I am just wondering”. My grandma thought for a few seconds and replied: “Because they know they can trust you and you will not hurt them”.
Many years have passed since that day, and I am convinced more than ever that for some reason I have been asked to do this. I do not recall how, why or when it was told to me but I know it happened. And rest assured, I intend to complete my mission.
Yes, I can relate…. Mealtimes are rough, most of our kids simply CANNOT sit still, and they are judged so harshly for it. It is great that you and your husband can make the time to eat together at some point! I really admire that!.
Came back here to read this post, and I just wanted to underscore your Grandmother’s words and to add…. You are SUCH a treasure! xoxoxo
Thank you so much Tracy. 🙂 I appreciate a lot your comments and thanks for stopping by!