Tyrique age 5, diagnosed with:
ADHD - attention deficit hyperactivity disorder
Developmental delay- refers to a child who has not gained the developmental skills expected of him or her, compared to others of the same age. Delays may occur in the areas of motor function, speech and language, cognitive, play, and social skills.
ASD- Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges.
I had Tyrique at the age of 38, the youngest of my 3 children. I am a single mother originally from the Bronx, NY. I moved to Virginia in 2011 to give my older children a taste of suburban life. We moved to get away from the big city life and I had hoped moving to VA would give the kids a better life with more opportunities. I met Tyrique's dad in 2013 and it was drama almost from the beginning.
We had Jr in 2014 and he became seriously ill when he was just 3 days old. Jr began the fight for his life and stayed in the NICU for a month and then was transferred to a rehabilitation hospital for about another month. He finally came home on Feb 12, 2015 with oxygen, feeding machines, nurses, and all kinds of machines to make sure he was breathing well and getting enough oxygen. Jr was diagnosed with brain damage which was permanent, and as time went on he received a diagnosis of adhd, developmental delay, and eventually ASD in 2019. Jr is my miracle baby. I had never had anyone fight so hard to be a part of my life before and I am eternally grateful he won the fight and is a part of our family.
I ended up leaving VA and moving to Delaware for a job opportunity and to be closer to my family who was still in NY. When I moved to DE I lost all of Jr's services and since he has behavioral issues he was expelled from daycare. Dover, Delaware does not have any services for special needs kids like my son that I was able to find. So, I had to quit my job due to the lack of child care and moved back to the Bronx to stay with my family. NY is a great big city and I knew I would be able to get my baby the services and the help he needs. The process has been challenging to say the least. Everywhere I go there are very long wait lists or his insurance is not accepted. I pray for patience everyday as I continue to maneuver my way through these agencies because I will not stop until I get him the help he needs.
Jr has behavior problems which is the most frustrating thing for me. He pushes other children unprovoked, he spits, he screams, and throws tantrums on a consistent daily basis. His behavior is disruptive in school and is impeding his ability to learn. My biggest question is how do you motivate a child to learn? How do you teach a child who is disruptive and has these behavior issues? I am desperately trying to get him ABA (Applied Behavior Analysis) therapy again since he started it in VA. I am hoping all these evaluations and testing will provide the help we need to get him focused and on the right track. Jr is very smart and I know he can be a great student. We just have this obstacle to overcome and I will do all I can to make sure we overcome it.
The ABA therapy has been challenging. Most of the places I called do not accept Medicaid so I’m having a hard time finding providers. I did find one place but they told me the insurance denied him. So now I’m back to square one. I cried yesterday because I was so upset. Sometimes I feel like I’m never going to get him the services he and I need and it just makes me feel so helpless. He goes to the doctor in Feb (2020) so I’m hoping they can give me some resources, because I need help.
I am surrounded by my mom and my sister and my aunts and amazing friends. I have an awesome support system. This was the main reason why I did not hesitate to move back to NY. I cry a lot because I get so frustrated and sometimes I feel alone on this journey, But my friends and my family provide an outlet for me to vent, cry, laugh, whatever I need to do at the moment. Being back home makes me know I am not in this alone and I have people on this journey with me. I have my dad also who is amazing with Jr and loves him very much. It takes a village to raise a child and my village is freakin awesome!
When Tyrique comes home from school he is exhausted. They switched his medicine to a higher dose recently and I think it’s making him sleepy. He comes home very cranky and moody.
Homework is tough because he is usually cranky but we get through it most days with lots of prompting and redirection. I try to remain as calm as i can and I will let him take a break if needed since it’s hard for him to sit still.
I am in love with my vision board. You basically create a vision board with all the things you want for yourself and what you see for yourself in the future. I’m a big believer in speaking things into existence so my vision board has lots of positivity, love, money, and good things I see happening for me and my children in 2020. I actually just got a new job. I think this new job is going to alleviate a lot of stress for me. I will have a steady income coming in and it will allow me to maintain my household and allow me to get my own place as soon as possible (my new fab home I see me in is on my vision board). My mom is retired now so she is going to be a great big help to me while I’m still getting things in place for JuJu.
Tyrique age 6
When Tyrique was born he was in the NICU on a ventilator, as he had gotten really sick all of a sudden. They air lifted him to Children’s Hospital in DC and he was placed on 7 medications and suffered 11 seizures in one day. He hasn’t had any seizures since but because he did it’s possible they could come back. He was displaying some body movements that were peculiar and the neurologist suggested we go to the hospital to have an EEG done to monitor his brain activity. This is the second one he has had. I watch Tyrique very closely all the time. Anything that seems out of the ordinary to me I take him to the doctors to have him checked out. He is a generally healthy kid now, however I do not want to take any chances. Eleven seizures in one day for a 3 day old baby is a lot. I watch him sleep sometimes and I think about that. I don’t take any chances with him, he is my miracle.
The hospital stay was ok. I got very sad though because it reminded me of those days in the NICU followed by the rehab hospital when he was a baby. Even now when I go back to VA to visit, and if I go to DC, I get overcome with emotion and I flashback to the NICU days. It was such a tumultuous time in my life. Tyrique was fine though. He had his tablet and he watched his shows, but he didn’t eat a lot. Neither one of us had much of an appetite. The EEG showed no signs of seizures however he had “irritability” or “spikes” on the EEG. In the end they determined the abnormal occurrences could be due to his brain damage (his hippocampus is damaged on both sides) or it could be nothing. I have to follow up with the neurologist in March for an MRI. We were there for a couple of days. When we were discharged I mentioned the name of his neuro from DC and when I did one of the Drs said “Oh I know Dr. Chang”. I flashed back to the NICU days and got sad again. I know I have PTSD because of everything that has happened to me from that period of time. But Tyrique is ok and we’re home now so that’s all that matters. As long as he is ok, I can force myself to be ok too.
He goes to a special school for children with Autism, Devereux Cares NY in Mt. Kisco. Once he started remote schooling last year I saw first hand how the community school was failing my son. He was in Kindergarten and the work was way too advanced for him. The school kept telling me “Oh don’t worry he won’t be left behind”. What?! Tyrique wasn’t even on a Kindergarten level and you want to push him to first grade? No way! The work was too advanced for him and he was falling through the cracks. I called IEP meetings, I called Advocates for Children, I researched schools and programs and the school finally agreed with me and recommended District 75 placement. I refused it. That was the only program being offered and I knew that was not going to work for me. I needed options. I knew what I wanted and what he needed and I was not going to settle. At the last IEP meeting the community school said I could call an impartial hearing if I chose to because they would not be offering me another option. I had already started looking for a lawyer because I knew that was my next step. So when the school said that to me I let them know I had already requested one. They called me back within an hour and said they would have the IEP meeting to explore other placements. It was at that meeting they recommended private placement at no cost to me. I cried so hard after that meeting. I did it. I fought for my son to get the best. My other children went to a top school in the city and I felt Junior deserved that too. That’s how we ended up at Devereux. I love it, it is an amazing school.
Junior gets ABA everyday for about 3 hours a day. It has been helpful and he has learned a lot from the ABA. Those negative behaviors I have seen are still there so I would like them to concentrate on that. But his school is an ABA school so that was another reason why I chose it. The home health aide comes daily also. She doesn’t do too much because Junior is fairly independent. The OT comes twice a week. The only one that has made a difference in him is the ABA. He speaks more and uses sentences more in his communication. But since I am heading back to the office I have to discontinue these things for now until I see what my schedule will look like with work.
When Tyrique is at home doing remote school my days are hectic. It’s constant noise and a revolving door of people coming and going in and out. My lunch hour isn’t used for eating. I’m usually helping him with a class or service or I have a video doctor visit scheduled. I often wish his dad was around so I could get a break and just be Adrina even for 5 minutes. But that’s not my reality, so I very rarely get to be just Adrina. I’m always Mommy, or Ms. Bell, or Junior's mom as the aide calls me, lol. But when he’s at school 3 days a week, I miss him.