Mother of Autism
Caring for an Autistic Child
So to start this is going to be a daily story of the journey of being a mother to a child who is autistic. I want people to know what it's like from the moment your child is diagnosed, to the steps you should take, and then what daily life is like.
Autism is not as rare as it used to be. Now when children are diagnosed alot of parents feel lost and confused. Some get angry and wonder why me. But there is no point in blaming yourself, it is a part of life that we need to just accept and deal with.
My son Andrew had a rather regular birth if you count a c-section as regular. There were no complications and he was a healthy baby at 37 weeks old. He was born August 23, 2017 and weighed 5lbs 4 oz and was 16 1/2 inches long. He was a small little peanut as the nurses called him. His father and I never imagined that he could be autistic. There were no warnings or any indications right away.
He passed his well checks with flying colors and by the age of 1 he was already saying; mama, dada, milk.
Then when he was about a year and a half, his speech completely stopped. It was as if he had forgotten how to talk. Then the behaviors started, the screaming, and aggression and just overall abnormal behavior. His father and I started to get worried, after all I hadn't experienced this with his older sisters.
So after getting a hold of Early Developmental Intervention, we managed to get him evaluated. At first the word autism wasn't spoke. It was a guess that he was just a bit slow or delayed in his development. But then his behavior got worse.
He would be perfectly fine one moment and then in the next be screaming as if someone was killing him. There were times when nothing would calm him and he would scream for over an hour. When he turned two my husband and I decided to get him evaluated for Autism.
We took him to a place called Hope Bridge, we were referred to them by Early Intervention. When we had the evaluation the evaluator was great. He explained everything he was doing and why. He explained what the ABA tests were and how they were scored and what the different levels meant.
After giving us an explanation he began to ask us questions as he watched Andrew. Andrew would not give eye contact, he would smack his feet repeatedly, felt the need to jump a lot, has a aversion to different textures.
On that day December 26th, 2019 he was diagnosed with level 3 high functioning autism. Now what does this mean exactly. Well there are three levels of autism.
Level One: People with level one have issues with their communication skills and socialization skills. The symptoms: decreased interest in social activities, difficulty with social interactions, struggle to maintain a two way conversation, obvious signs of difficulty communicating, trouble changing or adapting to changes in routine or behavior, difficulty planning and organizing. End result: Most people who have level one autism can maintain a high quality of life without much support from others. Behavioral therapy tends to help though.
Level Two: These people require substantial support, they severely lack verbal and nonverbal communication skills. Symptoms: Difficulty with change, significant lack of verbal and nonverbal communication, behavior issues noticeable by strangers, reduced or unusual response to social cues, communication or interaction, trouble adapting to change, communicating with overly simple sentences, and narrow specific interests. End result: They generally need more support than the level 1, even with support they still have a hard time adjusting to change. Different therapy helps, sensory integration therapy, occupational therapy are key. These help them to learn how to complete daily tasks such as decision making.
Level Three: This final level requires the most support (this is where Andrew is at). In addition to a severe lack of communication skills, and aversion to change, people with this level of autism display repetitive or restrictive behaviors. Doing the same thing over and over, either physically or verbally. These tend to distance them from everyone around them, which can lead to an inability to adapt and grow. Symptoms: Highly visible lack of verbal and non verbal skills, very limited desire to engage socially or participate socially, trouble changing behaviors, extreme difficulty coping with unexpected changes to routine or environment, and great distress or difficulty changing focus or attention. End Result: Frequent and intensive treatment, for different issues including communication and behavior, sometimes medication is necessary, a caregiver who helps them learn basic skills is also necessary.
Those are the levels of diagnosis, once they were explained to us a lot of things that made no sense were finally making sense to us. My son's repetitious behavior, his dislike and hardtime of changing his routine. The screaming for no reason. This was his way of communicating.
It's as if he is speaking in Italian and we are speaking English, his mind was not on the same path ours is so we couldn't communicate with each other. When he was diagnosed I took a deep breath and my first question was, what do we do next.
The therapist at Hope Bridge got us set up to do a in office evaluation to see if we could get services through them. Not even three weeks later we had our appointment and they were ready to get him started that Monday. Up to this point it had been a whirlwind of emotion.
After we had got this settled, we started to relax a bit. That night when my little one cuddled me, I started to cry. Not because he had autism, or because I was upset or angry. I cried because we were able to start getting him help, and he wouldn't be like other kids with autism that I've known that didn't get help as children.
For my story today I want to conclude with this: Don't be afraid, or angry, or upset if your child has autism. It doesn't make them any less of a person, it just makes them special in their own way.
Tomorrow I will continue my story with how his first week at Hope Bridge went.