Blizzard 2016 arrived and we didn’t have school yesterday. We both enjoyed a three day weekend. He got to go outside and have a snow ball fight with his friends and I got to catch up on treatment plans and lesson plans. I’m a teacher by day and a counselor by night. I don’t know how I make it work. Somehow it just all works. 

Yesterday I recieved a text letting me know that the schools will be closed again due to the amount of snow still left on the roads in the town I work in. I’m sure you may have seen it on the news. Many of Newarks residents are upset with the Mayor for not removing the snow in a timely and orderly fashion. I feel for the residents of Newark especially for those who live on side streets. It takes the city days before they get to you and plow your street and that’s with just a few inches. I’m sure it’s really gonna take them time with over 2ft of snow. 

Well any! I got another snow day and he didn’t. Justins not happy 😔 but I am ☺️. I have to attend his IEP meeting anyway today! He keeps questioning me on what I will be doing for the day. I told him for one thing I will be at your school and attending your IEP meeting. He smiled. I explained to him in a few years well actually next year he will begin to attend his IEP meeting. I can’t believe it. He’s going to be in the 8th grade and then off to High School. 😱

Time sure has ticked tocked by fast. 

Autism

Another Snow Day 

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So,I was filling out a questionnaire for a website that provides you with activities that you can do with your child or students with disabilities. I was asked the question “What is my biggest challenge as a parent?” It didn’t take me long to answer it. My biggest challenge is my fear. Here’s my response 

My biggest challenge as a parent of a child with a disability is trusting the world around him. I fear that people will take advantage of the good qualities I’ve instilled in him. 

Because I don’t trust the world around him I place a lot of restrictions on him. I know it’s not fair but it’s my way of keeping him safe as long as I can.  

What’s your biggest challenge as a parent? 

Keena's Moments

What is my biggest challenge as a parent? 

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Moments, Reflections

Part II / Two for One 

I know I’m a few tomorrow’s far from when I originally said I would continue part two. So here is goes. Dr. Levitt thought it be a good idea if he did one big surgery rather than two separate one because of the risk of him losing his hearing again once the tubes fell out. They say after the age of five ear infections shouldn’t occur as much as you get older. Well that hasn’t been the case for Justin. Somehow he still kept getting them. Well know we know why he kept getting them. His adenoids were so large they were covering the hole that drains your ear fluid. Which is why he had fluid build up in his ears. 
I wasn’t happy about the surgery because I was more concerned with how Justin will react. However, I know that it was a must because he needs his hearing. As soon as we left the doctor’s office I notified his father. He father was worried just as I was. This would be the first time Justin’s been in the hospital for something serious. He’s never really been or had to go to the hospital. Except for the one time when he was little and he needed stitches. Justin tripped over something and fell onto a broken chair. My mom was the one who took him to the hospital that time. I was at work. From what I recall from my mom’s version of things he put up a fight with the doctors. Justin was a strong little boy. He didn’t know he strength.
 After recalling that incident now I’m remembering another incident. When Justin was 4 he was bitten by another student who had the HIV virus. Yup! You read right. I don’t know how I forgot that day. I remember when I got that phone call from the school asking me to come in. I’m saying to myself why did they need me to come in for a bite mark they could have just applied first aide and wrote me an incident report. It wasn’t until I got there and they sat me down I understood. All I remember was grabbing Justin and flying straight to the hospital. The reason I had to take him to the hospital was because the other student broke skin. As soon as I arrived at the emergency room they took him straight in. I explained what happened. The number one question that I did not have the answer to was ” Did the other student have cuts or his blood in his mouth as he bit your son?”. Like I said I didn’t know the answer. The school didn’t provide me with that information. The hospital called the school and no one answered. For precautions and safety reasons they took blood for blood work and they started Justin on HIV meds. He would have to take those meds for a week or two. I was not a happy mother. He would also have to get tested again in six months to make sure he doesn’t have the virus. All I could think of is what else are we gonna have to go through. 
Justin is HIV free and he didn’t attend that school that long after the incident. 

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Moments

Dr. ‘s Appointment 

So, now I’ll continue the story. We get to the doctors appt and we go inside to explain to Dr. Levitt everything that’s going on. In addition to his hearing loss I was concerned about Justin snoring while awake. So, Dr. Levitt checks Justin and says his Adenoids and Tonsils are extremely large which is causing fluid to build up in his ears. I didn’t realize that our Ears, Nose, and Throat was that much connected. He said before he can make a decision on the type of treatment needed he wanted to check Justin’s hearing first. I’m thinking I had to scheduled another appointment to get his hearing check. Nope, everything was set up right in his office. 
Justin is looking at me nervously. He’s asking me what do I think is going to happen. I explain to him like before. The most serious thing that can happen is that he has to have surgery. He didn’t like the sound of that. I mean who does. I reminded him to remain calm and trust that the doctor will make sure he’s taken care of. So we go inside a small room to have his hearing check. As soon as the lady hook Justin up to the machine to do a fluid check she said ” Oh wow he has a lot of fluid build up in his ears”. She then takes in the hearing booth and checks his hearing. She’s asking me questions while doing the hearing test such as “is the TV louder than normal, does he talks lower, does he turns to one side so that he can hear you, and is he having a hard time hearing the teacher in school”. I answered yes to all of her questions. She then says “he’s going to need an IEP or a 504 plan because he’s lost a significant amount of hearing in his ears and his teachers need to make the appropriate accommodations so that it won’t impact his school work.” I took a deep breath and said well he has an IEP but I’ll see if we can get a 504 plan implemented. She also informed me to make sure he remains healthy as possible because any sign of a cold or sickness can reduce his hearing further to the point he becomes deaf. I took about ten deep breaths after hearing that. 
For the first marking period Justin received 4 A’s, 3 B’s, and 1 C. I think he did a really great job for someone who loss their hearing. He didn’t like having the C but I reminded him he did his best no matter what. So, we’re now back with Dr. Levitt and he reads over the hearing test. He said “well I have good news and bad news”. We can fix the problem but he has to have surgery”. So I’m thinking okay he just needs tubes in his ears. Dr. Levitt said “I can place just the tubes in his ears but because his adenoids and tonsils are so large we need to remove them so there is no more fluid build up”. Once again I said okay. I asked if we can just do the tubes to see how that works. He explained to me “we can but because of the size of his adenoids he’s for certain that once the tubes fall out his adenoids will continue to cover the hole that drains the fluid out of your ears”. As a result we will be back to where we are today. So he says “instead of doing two separate surgeries let’s just do one.”
That’s Part 1! I’ll continue the rest tomorrow. I have to get Justin up and ready for school. See you tomorrow. Have a good day everyone!!! 

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Moments

Good Morning! 

I have so much to share. I feel like I will be doing a flashback for the whole month of January to tell you guys about our December. In November we found out that Justin lost hearing in both his ears due to fluid build up. He lost 30% of his hearing in his right ear and 50% of his hearing in his left ear. He kept complaining that he couldn’t hear us that much and was having trouble hearing the teachers. I didn’t take what he said lightly. I first took him to his pediatrician to see his take on things. He thought maybe it could be an ear infection and allergies. But after checking his ears it wasn’t an ear infection. 
So he placed him on Flonase for a month and then recommended after that month on the Flonase if it does not work contact an ENT. I was praying the Flonase worked. Everyday at bedtime I made sure Justin did what he was suppose to. I would say “Justin did you inhale the Flonase” and his response as usual would be ” Yes, mom I did”. To make sure the Flonase worked I even cleaned out his ears every couple of days hoping that would help with his hearing. It would be the first day in November that I would receive a phone call from the school nurse. She informed me that Justin failed his in school hearing test. I informed her I was already on it and I’m just waiting to see the ENT specialist. I scheduled an appt with an ENT specialist but we weren’t scheduled to be seen until the third week in November. 
That seemed like a really long time being that he failed his hearing test. So I searched my desk for the ENT specialist list his pediatrician gave me and decided to call another specialist on the list. I called the specialist office and explained everything to his receptionist and she said we can see him tomorrow. I was so happy! Yes, we can finally find out what is going on with his hearing. 
Because I have to get ready for my day I will share what happen at the doctor’s appt. tomorrow. I hope you all enjoy your day! 

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Autism

He Got An A on His Spanish Test 

I don’t know how I have such a perfectionist of a kid. He has to do well in school. Last week he missed school because I thought his school was closed because my school was closed for Veterans Day. Nope! He had school. He did tell me he had school but I kept telling him he did not. Oh well! I guess next time I will listen or look at his school calendar. 

That following day Justin had a Spanish test and he didn’t do quite well on it. He called me overwhelmed and anxious. When Justin’s anxious he has a temporary headache and a slight panic attack. So what works in helping him relax is helping him sort out his solutions. I always remind him that it’s okay and next time he will do better but he does not like getting bad grades. So his solution was to stay late after class and speak to his teacher about giving him another chance to  retake the test. Justin said he’s also going to explain to her that he doesn’t do well talking timed test. Which is true! He always failed a timed test even in math which is his favorite subject. He would cry seeing a 40 on his paper. He would say I knew all the answers but I was worried about the time and not having enough time to complete it. 

He’s very much aware of his capabilities. He went to his teacher and explained to her why he failed and asked her if he could retake the test and she said “yes”. As soon as he got out of school he said “Mom! I retook the test and I got an A”. 😊 I was so happy for him. I praised him and told him how proud I am of him. 

Good Job Justin!! 💯 

 

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Keena's Moments

Happy Birthday Mom 

So today is my birthday. All I want to do is relax on my favorite spot of the couch. I told Justin and my boyfriend I don’t want anything big or to do anything big. However, I was informed this morning that because I ruined their birthday plans for me I have no choice but to let them complete what they have planned for me next week. I feel bad now. But I’m still going to relax. 
Justin sent me this beautiful text message.  

  
 Swag is a literacy program at Justins school  

This kid is so thoughtful. He also gave me a $1 he found on the street. Of course I couldn’t accept it. I told him to save it to buy himself something he wants. He said ” I wish I had a job so that I can buy you something bigger or you like” 😍. I’m so blessed to have him in my world.

My comfy spot has been taken. As soon as I get up this kid takes my comfy spot. I said Hey! That’s my spot for the day. He laughs and ask for some covers. Smh. Lucky got comfy with him.. I love my life and family. I grateful to see another year and be who I am. 

  
   Was this your spot ? 

Happy Birthday to Me and my twin brother!!!

 Keena and Keith

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This weekend has been a Wii filled weekend. Somehow Justin convinced me to place the Wii in the livingroom. I thought to myself maybe it’s not so bad having the Wii in the living room because I can catch up on my shows like Law and Order and Criminal Minds. I know I can watch them on regular tv, but there’s nothing like watching your favorite television shows back to back without waiting a whole week to see it again. I don’t care if I am a season behind, it’s certainly worth the wait.  
Back to the story. So Justin pretty much took over my living room now. Everyday, he says to me “Mom, can I play the Wii?” I sigh and say, ” Yes Justin.” So in the process of him playing the Wii in the living room he’s got my boyfriend and I playing the Wii with him. He’s truly enjoying his family moments. The smile on his face is priceless. Anything to make him smile makes me smile. Because of our Wii Moments we’re now having Wii challenges. So far he’s kicking our butts in bowling but I rock in Archery! Lol

Moments

Our Wii Moments 

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Lights

Hope is Light 

Last night Justin came to me and said “Mom take a picture of me holding this candle lit”. I said, “Okay”. He knows about the blog and loves the idea that I share our story with others. I took the picture. I was curious to know what the light meant to him. I asked him about it. He said, “Hope is Light”. I replied, “Interesting”. Then I asked, “But how?” He replied, “Hope is in the light because it can be a path for a bright future”. I hurried to grab my phone and asked him to repeat himself. He repeated that profound statement and then asked,”Are you putting that on the blog?” I responded with, “I sure am!”
“Hope is Light” ~J.W.C.

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