Testing, Testing

A couple days ago, I woke up feeling some kind of way. As many of you know, Amir had 3 major head surgeries before he was a year old. The aftermath required him to have to go to different therapies to reach all his developmental milestones again (though thing for a parent to deal with). I remember at one of his neurology appointments, the neurologist told me “ You can have him tested to be put in special ed”. I told her that wouldn’t be necessary, but he was like two, so I was like what the fuck. That shit was always in the back of my mind. She was ready to label him without even really knowing him or assessing him.

Fast forward to now

He’s gearing up to attend Pre-K in the fall, and because he stutters occasionally, I went ahead and had him assessed. Ya know because I don’t want anything in the way of him learning.

The woman who assessed him took my concerns just as seriously as I did, and I appreciate that. I explained his medical history to her, and she was shocked. She stated how she never would’ve guessed he had gone through so much.

So boom, she begins assessing him. He’s ripping through these tests like it’s nothing. Answering everything with ease, and a bit of smartassness, (pretty sure I made that up). He even knew things I thought he didn’t know, things he’d tell me ” I don’t know” as an answer when we are reviewing material. Every so often she’d stop and say “Mom, I don’t know what you’re worried about, he’s really smart”.

I could see for myself she was thoroughly impressed, her body language said it all. She tested him for about 30 minutes, right. When she was done, she stated how he’s performing how they expect 6 year olds to perform. I was like what you talking about Willis. To me he was simply being smart ass Amir. (Insert gif)

She stated how she only heard him *insert technical name for stuttering here* once, and that it certainly does not affect his learning abilities.

Having him tested eased a lot of things for me. Knowing my 3-year and 9 month old perform how they expect 6-year olds to perform was quite comforting. My efforts of educating him have paid off.

After the assessment was done, I began to think about how the neurologist was ready to throw him into special education. There’s absolutely nothing wrong with special education, but I do have a problem with people labeling children, particularly black boys, before giving them a chance to display what they are capable of.

Parents should certainly get their children the help they need, but don’t let anyone label your children. You have to fight with and for your children. Don’t ever let anyone just throw labels on them.

I wonder where my baby would be now had I settled for what the neurologist suggested.

Nonetheless, I am super excited about my baby going to big boy school. He’s so elated to finally be going to school with his big brother. Hmm 🤔, I wonder what the results would show if I had my oldest tested, that kid is highly intelligent.

Each one of my children have taught me very different things, and that’s what motherhood is about. Not only are we to teach our children, but they teach us.

This journey with Prince Amir has been an extremely turbulent one at times, but oh so beautiful.

If you haven’t, you can read about it here

Advertisements

What a Difference a Year Makes

December 22, 2014, a day I won’t forget. I was at work, and received a call from my sons pediatrician. He told me I needed to pick my son up NOW and get him to the emergency room. I stood up at my desk, and said “Ok. What’s going on?” He proceeded to tell me that my son had a skull fracture with bleeding on his brain. That he had called the emergency room and told them I’d be in with him. I remember telling my boss “I’m leaving and don’t know when I’d be back”. I called my mom while I was en route, and she was able to keep me a calm while I drive. I made it to daycare in 10 minutes tops. I sat in the car composing myself because I knew this could get ugly extremely fast. I walked in as another parent walked out. I went to where my son was sleeping and I stood there. His caregiver was changing another child or something, I really do not remember. When she turned around and saw me standing there, she tried to make conversation. I wasn’t having it. I asked had my son fallen or been dropped since he had been going there. She said no. Ok, I figured that would be your response. I walked out rudely, and sped to the hospital.

Sure enough, they were awaiting our arrival at the hospital. I was questioned by doctors, detectives, and Child Protective Services. I was highly upset because I knew I had not harmed my child, yet I was being interrogated to the point of aggravation. When I was told an investigation had to be done to see where my son would end up, it hurt my soul! My baby was still exclusively breastfeed, so I’m thinking he can only be with me, and I’ll be highly upset if someone gave him formula.

When the doctors showed me the scan of my sons head and told me he should have been in a coma because of all of the blood on his brain, I could have lost it. I was livid!! The up side of it was they also told me he showed no signs of shaken baby syndrome, so he had either fallen or been dropped, *sucks teeth*. They told me how some of the blood was old and some new. Whaaaaat?!? Are you serious? All types of thoughts are running through my mind. Who would harm a child? A very small child at that. It was concluded that he was injured between the ages of 4 and 6 months.

These people turned my life upside down! Interviewing anyone who had ever interacted with my son, questioning my abilities as a mother, the whole nine. Meanwhile doctors came up with a plan as to how they plan to remove the blood from his head. He was scheduled to have two drains inserted, one on each side of his head, to remove the excess blood. First my baby needed a blood transfusion because his was low.  W T F! Dad may not have known it then, but I’ll tell him now, he kept me sane while my son was in the hospital.

December 26th, surgery day. Needless to say I’m nervous as all get out. The hardest thing ever was watching my 6 month old be wheeled away and I couldn’t be right there next to him. Surgery went well. Of course I couldn’t pick him up because of the drains, which meant I couldn’t nurse him. I absolutely hate pumping, but I did it for my son. He was a busy baby, trying to pull the drains from his head out of curiosity. The drains were connected to these measuring tubes on each side of his bed, and I could see all of this blood being removed from his head. CRAZY! As the days went on, the doctor informed me that the nurse could close the tubing so I could nurse him. That was a great relief. I was more than cautious with him. Our bonding time was limited due to these drains. My son would not nurse for long, as he would just fall asleep. He was comforted just being in my arms.

 One of the drains my son was connected to.

Being in PICU was hard. I was away from my oldest son, and he could only visit 20 minutes a day because he is younger than 14. About a week goes by, and no improvement in his condition. The neurosurgeon told me how his next step was to install a ventriculoperitoneal (VP) shunt.

A ventriculoperitoneal (VP) shunt is a medical device that relieves pressure on the brain caused by fluid accumulation. VP shunting is a surgical procedure that primarily treats a condition called hydrocephalus. This condition occurs when excess cerebrospinal fluid (CSF) collects in the brain’s ventricles.

I’m not a person who panicks or overly stresses, but this disturbed me. The fact that my son had been injured, and all of this could have been avoided by  whomever the culprit was, simply telling me. Anywho, I agreed to the procedure. I was not at all happy about my baby being sedated and cut again, but his overall well being was the at risk.  The neurosurgeon informed me of how my son may need the shunt for the rest of his life, and may not be able to participate in sports because of it. I was saddened to know that there was a possibility he wouldn’t be able to participate in things because of his condition.

  Throughout it all, my son was always happy.   

Again surgery went well. We stayed in PICU, a couple weeks longer. My son began physical, occupational, and speech therapy, as a result of the surgery he lost most of his developmental milestones. That’s what took the greatest toll on me. As parents, we can’t wait for our children to meet milestones, as it is a sign of their growth. I was pissed and hurt that we pretty much had to start over.

Once discharged, we of course had to see the neurosurgeon for outpatient check ups. A few days before his first checkup my son began to have a twitch, which I soon learned were actually partial seizures. At his appointment, he had an episode. The ticking was so minor that the neurosurgeon didn’t think it was much to be up in arms about. It wasn’t until my little man had a checkup with his neurologist, that they concluded they were partial seizures. This was fixed with medication and another surgery for drainage purposes.

Everything was looking better, he was getting his therapies and making improvements. Then one day at a physical therapy appointment, he vomitted on the therapist, and had to be rushed to the hospital. Because of the shunt, anytime he vomitted, he had to go to the ER. This go round I was told he had a fresh bleed on his brain. Now I’m panicking! It seemed as if we couldn’t catch a break. They monitor him of course, and his neurosurgeon comes up with a new plan to drain the excess fluid. They get the excess off his brain without having to resort to surgery, which was my greatest fear, another surgery. Once discharged this time, things began to look better quickly. EXCEPT for the fact that I was terminated from my job because of my attendance. That did not bother me in the slightest. If I had to choose work or my children, my children easily come first.

To eliminate having to schedule 3 therapies weekly, I placed my son in a daycare for medically fragile children. I looked for a job, went on interviews, and never seemed to be hired. This pushed me to find ways to generate income using my talents. I did pretty well for me and my children. There were good days and there were bad days, but that’s life. My son continued to make great strides in his development. The staff at his daycare were so very helpful, and I am forever grateful to them. Everything in our world had improved, and then…

On an October morning while working out, I receive a phone call from his daycare. They were concerned about his shunt, although he showed no signs of anything being wrong. I rushed him over to the ER. They examined him, took images of his head to see was the shunt functioning properly. GUESS WHAT?!?! His neurosurgeon found that there was no longer any need for the shunt and scheduled him for surgery to have it removed. This was a moment I thought wouldn’t come until some years down the line. I was so happy! My son thought my excitement was funny. Everything went well. He continued on at the daycare, and receiving his therapies. It seemed as if after the shunt was removed, his speech improved drastically. Shortly after that,  he began walking. That was a moment that brought tears to my eyes.

Everything he had acheived in these few short months did not come easily. There were nights when we were going over activities the therapists gave us to do, and I could see how sometimes he wanted to give up. I could’ve easily gotten frustrated, but I pushed him and myself to get through it. Yes, I wanted to swoop in and hug him, kiss him, and not continue with the activities, but I knew that would not have been beneficial to him, at all. There were times I tried to shelter him from certain activities because I kept thinking “what if he hurts himself”. I had to let him be a child, test boundaries, become self aware.  Those are things we have to let every child do, in order for them to become productive citizens of the world.

In the beginning I used to wonder why this happened to my child, but then I changed that to why not my child. This proved to me that no matter how much you vet a person or facility, things happen. Now I know things do in fact happen, but do NOT neglect to inform parents/guardians about what happened. As a parent I can respect a situation far better if you are upfront about it. Yes, I would have been mad at the incident, but I would’ve gotten over it. I don’t exactly hold a grudge now, but I occasionally become flustered when I think about it all. I am thankful for my sons, and glad that we can put all of this behind us. It took a toll on every member of my family.   With all of this said, I am not sure why it happened to us, but it did. I used to feel like it would not help anyone if I spoke about it, but now I’ll use any platform given to me. Parents please take your children to their respective checkups. Taking my son to his checkups on time was the only way we caught the injury, because he showed no signs.

This entire incident pushed me to think outside of the box when it came to generating income. I’ve come into contact with many mothers, and I have learned that we all struggle with figuring motherhood out. If we would stop trying to hide our struggles and openly discuss them, we can get the help needed. No matter how much help you do or do not have, being a mom is a journey. You discover so much about yourself. Be a fearless mama!  None of us have it totally figured out. Anything that you’ve been through, let it be a message to others. These are the things that make us who we are, none of us are the same. This is only a piece of our story, and I am open to answering any questions anyone may have. I just want to inspire people. I’ll leave you with a video that makes my heart smile every time I watch it.

To my oldest son, mommy loves you for being the brave, outspoken, wonderful big brother that you are. To my baby boy, mommy loves you for being the resilient, fearless, warrior that you are.

****UPDATE****

Here it is July 2017. My kiddo is now 3 years old and oh so amazing. I had actually forgotten about this blog post until I came across photos of him, as an infant, before he was injured.

My little man has become the epitome of what most of us think little boys are. He runs, jumps, fights, and eats EVERYTHING in sight.

Whenever people hear him speak, they’re surprised to learn that he’s only 3. We always get “he speaks so well for a 3-year old”. People truly don’t understand how happy that makes me. It affirms that all the work that was put into getting him back on track was not in vain.

I’ve spent this summer preparing my threenager for daycare/preschool, YIKES, as he has to go, now that I’ll be substitute teaching this upcoming school year, until I finish my Masters program. He’ll be in school with big brother next year, and big bro is excited about that.

My journey with my son has taught me that consistency is key. Stay consistent and you can achieve anything.

THANKS FOR READING!!