Thursday, March 28, 2013

My Child has........Oh so much

Friday Awareness Post From a friend.........

My SON is my 5th pregnancy.  My daughter passed away in1999.  When I found out a was pregnant, I was not excited, I was terrified.  I'd been down this road so many times.

I got prenatal care 3 weeks into this mess, week 6, 7, 8, and 9 went by, and then by week 10 I knew something was wrong!  With my blood working and internal ultrasound they found I had CRV(Toxoplasma gondii)from cat litter and uterine cancer.  The doctor says you need to consider an abortion because the fetus will never make it to term.  Well I said a few choice words and found another doctor. In my first trimester I was being monitored very closely.  Week 18 I started to bleed bad. The doctors gave my son (in utero) Christian shots to develop his lungs right then and there and stopped my labor.  Week 23 my uterus started to descend.  I stayed at a 90 degree slant upside down until week 32 then my water broke!  June 24 @ 6am they gave me a pill to dilate my cervix and every hour they probed me and it was so painful!!  Then at 6pm another pill because apparently even thou I am a larger person I have a small and tilted vagina...go figure.  Around midnight, 18 hours later and I'm only at 2cm...they hook me up to potassin...Then around 2ish Christians heart rate becomes erratic and then flat lines, they unhook me get me ready for emergency surgery when he starts to come around, so they let me be.  6am on the 25th roughly 24 hours later and I am still at 2... so they hook me up to potassin again with the same results.  The doctor schedules a C-section for 10 am. While monitoring my sac fluid.  I got into emergency surgery at 2 a saddle block (the parts of a patient's body that would touch a saddle if the patient were sitting in one are anesthetized by injecting a local anesthetic into the spinal cord) because they are running out of time.  I'm telling this bitch I feel her cutting, but she doesn't listen!  Then they pulled my baby boy out.  The last thing I remember is telling my biological mom I love her and to takes care of my son.  I knew I was dying. I seized ....fell off the operating table and went into a coma.  2 weeks had past when I woke much more I could tell but this lies the foundation for what plays ahead.......

He was so long and only 4 pounds.  He was my beanpole. 

After the feeding tube came out the fun began. 7 formulas until we found alimentum, which is $25 a can and wic only gave us 8 a you figure how many we had to buy.  We were at the doctors weekly because something was wrong.  OK, so again I will cut to the chase cause so much more to tell...Bean had 13 sets of tubes, 3 corrective eye surgeries, tonsils and adenoids out all by the age of 2.  He was doing breathing treatments since he was 3 months old and started singular at 1 year, crushed in applesauce.  He still was mute, so we taught him ASL(American Sign Language) which he still knows.  He hit most of the milestones, but let me tell you, I have video proof lol, he never crawled, he was up and running at 9 months.

By 1 he had already had 4 sets of stitches.  I never "hospital shopped" I always went to same er, even if it was a bump, just to make sure.  CPS showed a few days later, interviewed all my neighbors, they told her they had never seen a more amazing mother, even with all my health problems, (I had had 23 surgeries in my sons first 2 years of life) anyway CPS was there 11 minutes and I was calling 911....bean came running around the corner and hit the staircase head on.  She said ladies case closed, good luck at the hospital!

He was soooooo tall but sooooo behind in weight.  He was on formula until he was 3 1/2.  At 4 years old he reached 30 pounds, his asthma and allergy's were  finally under control, but to this day he dehydrates within minutes.  Oh yeah and when He was 16 months he was completely potty trained.  He wasn't having any part of the diaper thing! 

Skip ahead five years, yes bean was placed in preschool and as an educator I could already see developmental milestones not yet met, but I continued to push his verbal skills, so there are no words.  At the end of his kindergarten year sight words and reading were average, geography and science soaring above average, so what's left, math and communication skills didn't exist so I decided to hold him back.  The next year seemed to zoom by, he had caught up for the most part but he still was behind in math and communication, worst of all he had gotten to make one friend, then it happened I got sick.

6 months I was gone, and my baby had been bounced between our home and his grandparents.  So much more to tell but not enough time.  When I returned home from the nursing home everything had changed, Christian had relapsed in his studies, social and emotional skills were gone and my baby, who I fought so hard for, for 7 years, was unrecognizable to me.  Cruel and disrespectful, didn't give a damn about anything, not even school anymore.
  No one saw this?   No one told me, was everyone that ignorant.....really?  I know what you are thinking...why didn't I see, simple I had sepsis, I wasn't allowed visitors, I was contagious and he already had enough medical issues.  We talked everyday but obviously it wasn't enough.  School personnel said "He doesn't focus on his studies"  "He refuses to participate in the extra studies program I placed him in"  "He bounces of the wall, gets distracted easily, focuses on something and than obsesses"  "what social/emotional skills he had were gone"  I decided to seek help for him for us for everyone.  16 hours of testing, while starting individual therapy, and parents child interaction therapy each one weekly still to this day.  He has been clinically, legally, diagnosed with PTSD Severe OCD and ODD...ADHD and Asperger's moderate on the autistic spectrum of social/emotional disorders, basically a got mess and long ass road ahead.

We tried Adderall and his poor tummy oh it was bad, so that was only 3 days.  I let a month go by and we tried Focalin.  Um, yeah, no that was a week trial period and I pulled him off.  He was aggressive and beat the hell out of me with a broom after I came home from surgery.  Destroyed and broke everything, and I mean everything, I did have a lock down in someway....I was done with this. 

Another month went by and he was struggling in school and getting beat up almost daily for being different, so I put him in a program called trauma focus day treatment and education.  They were lacking in educating these kids but were fantastic in coping with all kinds of issues and social skills.  You name it they did it.  Meanwhile we tried the Daytona patch....again no...if he actually kept in on.  He was an emotional mess and if you looked at him wrong he would cry.  He was going great in day treatment, but I started to get concerned, he again was falling behind educationally, so I pushed to get his meds regulated, we tried conserta, a month went by with a very slight improvement, increased the dose, 2 months later or little more so we increased the dose and nothing changed, we increased the dose to max for his weight but still one more level, We couldn't touch so I did about one month worth of research on intutiv and asked  his doctor what she thought.  She thought that he was a little better but I knew that around Christmas time I wanted him in a real school, but in his "special" environment he needs I knew what I had to do. 

Funny, because, later that day I got a phone call saying Christian is am amazing child and was more than ready to graduate from the program than most seniors who get aged out, fastest child to ever complete the program!!
My baby did it and WE as a school and as a family celebrated for a whole week, anything he wanted to do we did, in this time conserta and intutiv still seemed to be worn off my noon.  We could not even do a fire drill at home because 3 pm was to late for him....He was more concerned about how the fire extinguisher worked, the a b c meaning, blah blah blah.  I continued to make phone calls to a private school that some of my own students had transferred to, and got him am interview. I wanted them to see him at his worst so there were no surprises so we went in the afternoon; more testing and monitored social interaction.  Guess what? My SON, was accepted as a student for the upcoming new school year.  He is in transition now slowly until we continue to tweak his meds and continue therapy twice a week.  We have recently added a very small dose of Ritalin at noon, no noticeable changes or effects but its only day 3, I have not really talked about home life because each day is different.  Do I believe in sun down syndrome hell yes....full moon effects hell the weather making him more hyper or more down...hell we argue....hell we play...hell we need space from each other...hell yes but you know the best question asked....DO WE TEACH AND LEARN FROM EACH OTHER....HELL YES.

Because no matter how sick I am....I fought with all my might to bring my special angel into this world and I will crush any disease or human who stands in his way to becoming an extraordinary person....

 He forever will be my beanpole.


  1. Having a child with one disorder is hard, but Having a child with multiple disorders and severe health problems can be am exhausting journey for all involved. Everyday is an experience with new waters to test. Find an outlet for your child (trial and error) and yourself, but most importantly remrmber one thing:a lesson I learned from other parents going thru the same thing...learn something from each tribulation you encounter...

  2. Trying to Survive PTSDApril 3, 2013 at 4:56 PM

    I too was an unhealthy child. I didn't have nearly the problems that your precious one has but I'm not trying to make comparisons. Unlike you fighting for everything that is best for your child, I was a hassle to my parents. You are truly an inspiration to me. Though I have found the man of my dreams that treats me like a king and never lets me forget just how much he loves me, I still long for the love that I never felt as a child; that is a large contributing dynamic of my PTSD. I am sure from reading your story that you already know the importance of love. What you may not know is how important it is to your son. To an outsider all that you do for your son with all of his and your illnesses is proof of unyielding love. To a young one it may look completely different. Inadvertently while being focused on the health and wellbeing on your son he may not see the love behind it. I guess my whole purpose for writing is to give you a gentle reminder to not forget the love. Tell him of course but show him too. I would have given anything to have cuddled up on the couch with my Mom or Dad with their arm around me, even for a few minutes. Just to melt into them, to feel safe, to feel loved. And please play with him, be silly with him. He will see that as love. My parents were never silly with me and were upset if I acted silly. There used to be a place here that was indoors and had slides and tubes and lots of ball pools that I used to take my kids to. Parents got free admission and they just sat around and watched the kids have a great time. The first time we were there I asked if I was allowed to play with them. They said they encouraged it but very few parents ever did. I got my fat butt up in those skinny tubes and had a blast being silly with my kids. The other parents looked at me like I was nuts but I was a superhero to their kids. It was awesome. My kids knew without a doubt that I loved them from something as simple as me playing with them. (Playing comes with the extra benefit of keeping you young and happy too.) It doesn’t hurt to never let a day go by without hugging them and telling them you love them; no matter how good or bad the day has been. To finish up, bravo for being such a fantastic mother! I know that with you on his side, that you your son will be successful in life. Best wishes!

    1. That was so very sweet! It made me (the Blogger) cry! I will strive to be better than I am. I will also share this with the one that gave me the story so she can see that she is doing the right thing....

      Thank you!