On Wednesday Sept 23, 2015 at 11:53am Jace came into the world at 1lbs 4oz and his sister Amara Renee was born 12:04 pm weighing 1lb 5oz. Jace and Amara were due Jan. 16th. The 23 weekers were fighters. Unfortunately, Amara gained her angel wings 10 days after being born leaving her brother Jace to fight in the NICU. Jace was hospitalized for 4 months he had severe grade 4 bleeds of the brain and chronic lung disease due to premature birth. When he came home in January he was on oxygen until May of that year.
Jace had services from Early Intervention ever since he came home from the NICU, he had pt, ot and speech. Jace was delayed with a lot of his developmental skills due to his premature birth. As a mother I made sure that Jace had all of the services that he needed. I made sure the I was and still am his advocate, when he was 3 years old I noticed that he still wasn’t talking at all. I noticed that he was stimming as well. I asked his coordinator with Early Intervention if he could have a developmental test. I set the appointment up and that’s when I found out in late December of 2018 that Jace is on the spectrum for autism.
Cayla was born 35 weeks to the day. She was considered a late term premature baby. Luckily after a week my baby came home with me. Cayla was always a quiet baby, so quiet that when she started walking I had to put bells on her shoes lol. Just so I could find her. At her 16 month appointment her doctor asked me how she was progressing. He then informed me that I may want to get her hearing checked because at the time she was only saying two words. After the first appointment and being told she was okay and would need speech therapy. I knew speech wasn’t going to fix this so I went for a second option. I remember it like it was yesterday, it was June 19, 2016. My baby was diagnosed with ASD with a receptive disorder. In terms sometimes she has difficulty understanding what is said to her. Then I think about when I tell her not to get on the ice cream and when she hears me coming she runs past me laughing. Also she can hear the language but cannot use spoken language.
That night after her diagnosis I cried an asked the lord why my child was different. Did I do this to her and how will her future pan out. Over the years I have come to learn to live with my child’s disability because it doesn’t define her as a person. When you see her running and smiling. I know that her future is bright!
She first went to Crozer and I had already made the second appointment at Du Pont in Delaware. But I went to the second appointment because the doctor at Crozer was not able to answer my questions about why. I wanted to know why their was a change in her demeanor after her first birthday. She said she was find and the speak would help. But my mother intuition told me it was something else and I could figure out what exactly
I went to Du Pont because they have one of the best behavioral health centers for children plus the doctor didn’t sugar coat it any wanted to help make both of our lives easier
Her triggers include tiredness: when she is tired she wakes up at 7am and doesn’t go to sleep till almost 10 some nights. Instead of laying down she will start running around and making loud noises and sometimes trying to bite herself.
Discomfort: she does not have frequent bowel movements so after about a few days of not going you see a change in her demeanor and her eating habits
Large Crowds and loud noises
Not being able to express her needs makes her frustrated and will cause a change in her routine.
Shiheem was 3 years old when he was first diagnosed with Autism and ADHD. What made me feel something was wrong was,at the age of 3 still was acting as if he was a one year old baby. While attending daycare he could not say his name or state what he wanted or express his emotions. At the time I couldn't express my feelings because I was unsure of what was going on with Shi Shi. I wouldn’t say in denial but more unsure.
His triggers are loud talking or loud music or being in a loud situation period. He is most definitely a loner and is very stand offish. Shiheem is affraid to ask for help from family and people he does not know. Shi likes to color, play at the park and watch youTube.
Shiheem has come a long way
He is able to express how he feels and his vocabulary is coming alone so much. There are times when he is still unable to express his feeling in full detail but we are working on that daily.