Friday, August 23, 2013

This week as a special needs parent

The past few weeks have been interesting, but this week takes the cake. Toss in a cycle and you have mama, filled with extra-emotions. I have not even exercised but once this week and broke my diet, a lot. Really hate to do the weigh-in later on tonight.

Anyway, Kalen has a global delay. He is delayed in walking, talking, and fine motor. Brad is autistic and adhd. Kalen is 2 and Brad is 12.

Kalen's ECI referred Kalen to a neurologist, who requested an EEG, EKG, audiology, and genetics testing. Kalen did excellent in Audiology. He has perfect hearing, even though he lost interest during the examination. Throwing a two-year old in an audio booth, with toys, is trouble lol.

So, this was my week--this week.


Kalen had Physical Therapy. He did excellent. Ms. Sandy even had him practicing outside on the sidewalk. He walked, with one finger holding Sandy, from the sidewalk to the house and back. She said with his progress (if he continues like he is doing), he may be walking by Thanksgiving.


I had an eye doctor appointment to replace my glasses. I did an exam and picked out my new thin, black frames. Why I am replacing them? My wonderful son, Kalen, broke off both handles. I went to the dollar store, bought some reading glasses, installed new handles on my glasses, he broke those off too, along with the brackets. 

Later that day, Kalen had early childhood intervention. He did excellent. He played with the toys. It was also a sad day. It was Lisa's last day of working with Kalen. Everyone had to re-apply for their jobs. Lisa chose not to re-apply, so she can focus on school. She also mentioned the department lost at least 10 other people (those, who chose not to re-apply and terminations). This means over 300 kids do not have a therapist. The week before Lisa had told me to go on an advocate-emailing spree to get a new therapist for Kalen. Luckily, Lisa found him one or one was assigned to him, since he needs help with transitioning. Kalen will conclude both ECI and PT through Keep Pace in May. He also starts school in May (Head Start and a school for developmental disabilities). I will miss Lisa. She has worked with Kalen since he was 1 years old. 

This was not supposed to been an ECI day, but Lisa is having surgery, I think today, and wanted to see Kalen. 


Brad had an new pediatric appointment at LBJ hospital. The appointment was at 12:45. The appointment lady told me to be there an hour early. I got there around 10:30. My mother dropped us off. After navigating the hospital, we finally found the pediatric clinic. I signed in. The registration lady said I was early. (No, for real). I sat down. My kids, my lovely kids, was fighting with each other. Pushing the stroller. and hungry. I fed them before leaving the house. I went to the vending machines on another floor, where the machine was fancy. The machine did not accept dimes, nickels, or pennies.

I also gave Brad his risperidone to calm him down BEFORE leaving the house. I gave him a smaller dosage of Melatonin to calm him down. None of it worked. Brad was good until they brought him back to take his vitals. The nice nurse, Ms. Wesley wanted Brad to get on the scale. This meant taking off his shoes and backpack. He screamed a loud, piercing scream. Would not cooperate. Finally when Ms. Wesley left the room, Brad took off his shoes, took off his backpack, stood on the scale, and another nurse ran quickly into the room, to get his weight. He also let her take his height.

We was getting ready to go into another waiting room, when another nurse said the room was ready. The children tore up paperwork out my purse, knocked over stuff in my purse, was screaming, hollering, fighting again. The dr, a resident came in. He asked me a bunch of questions. He did not access Brad at all, except his heart. On a good note, Brad has lab work next week (have to change the appointment. Overbooked myself accidently), will get a referral to a dentist, and will get a referral to a autism clinic.

Then, had to wait over an hour for my mother to pick us back up. Brad was starting to act up badly. He laid in the middle of the floor, by the sliding doors. He banged on the windows. Kalen slept the whole time during the middle of this. We was at the hospital from 1030 am to 430 pm. Too long if you ask me, especially for a mama, dealing with Aunt flo, and two special needs kids.


Kalen had an MRI and EEG scheduled at Texas Children's. I had no sleep since I had to get up before 5 am to get to the hospital at 6 am. I had to sign him in at one building, then walk to another room for vitals, then go to another building for the actual test. While waiting, I went to get something to eat. I had no idea how to get back. I knew what building he was in and what floor. Everyone I had asked did not know where radiology was. I ended up walking past the building I needed back to pediatric radiology registration to ask where I needed to go. I finally found my baby. Within minutes of me coming back, Kalen was brought into recovery, where they woke him up quick. Yay me. Kalen's EEG was in an hour. I wanted him to stay sleep. I found my way to the EEG room. Same building, Express elevator, 21st floor. Signed him in. Kalen went from waking up from MRI to active baby. He was crawling. He was climbing. He was trying to walk. He was pushing the stroller.

The lady in the EEG waiting room said the EEG person could take me an hour early since she had no one back there. So on, we went to the EEG room. It was made for sleeping. A big sofa bed and soft cushiony chairs for sitting and sleeping for the parents/guardians. The tech wanted Kalen to go back to sleep. Kalen was not having that. I presented him a boobie and between crying, screaming, and trying to unplug the wires, Kalen and I both went to sleep. Eventually, the tech came back into the room, woke me up, and told me to wake Kalen up. Kalen never woke up until I got home 2-3 hours later. The poor lady flashed lights in his face, called his name, flashed more lights in his face, and Kalen refused to stir. His hands moved. his body moved, but his eyes said, hey man, he is tired, leave him be lol.

I got home and crashed. My internet was down. Didn't feel like checking my email from the phone. I was tired. I said, screw it, and went to sleep.


No therapies for any child today. I woke up about 10-ish. I been trying to clean all day long.  I got some work done. My youngest done pulled my mirror off the back of the closet door, with the door screws as well. He also left me a nice surprise when I went to do laundry. I put him in his crib, with the bed made. Came back, to see a naked baby, with all the bedding pulled off, except the bottom sheet. 

Monday, Brad has a psych appointment. Wednesday, Kalen has an ECG appointment. Let's get next week started.

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Please leave a comment. Thank you. Stacie