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    Posted June 18, 2014 by
    This iReport is part of an assignment:
    Raising a special needs child

    Trying to balance a broken system and my broken son.

    Looking back on the past ten years I am amazed that I have survived with a sense of humor. To explain that simple sentence you would have to travel an anguished and frustrating past to when I was a happy care free 24 year old. At the time I was engaged to your father and just found out I was pregnant. He was very happy at this surprising news. I was not as joyful as he was but I decided that since he was excited I was excited. As my pregnancy progressed I developed really bad nausea and vomiting. I even lost weight but not enough to cause alarm. I was bartending along with waitressing still and my ob didn't think this would harm the baby. My ninth month came along and I decided to take leave off work. Unfortunately your dad and I were not on the same page. Your father couldn't hold a job and was having I thought at the time a mental break down. On easter sunday april 4 of 2004 at around 6 o'clock a 7 pound 6 ounce 21 inch long gorgeous baby boy was plopped all slimy and gross on my belly. I loved you fiercely and utterly. Everything was rainbows and sunshine the first 2 months of your life. Then your dad lost job after job and we were fighting again. Eventually I decided to go back to college to finish my degree and convienced your dad to get his GED and go to college too, you were about 6 months at that time. All through your 6 months you babbled fluently avoided eye contact screamed like you were in pain through diaper changes and clothes changing. You hated when we had company and grew fussy everytime. I had no idea there was anything wrong. The local college had a excellent day care co op program and you were enrolled on campus so I could continue to breastfeed. I was enrolling in the nurse program. The months flew by I continued to have issues with your dad and was aware of your developing oddities but completely clueless to what it all meant. Then at 15 months the teacher of your day care and supervisor of the center called us into a meeting. The teacher was concerned that you were not able to play with others or toys like other children. Also you acted deaf unless it was a siren then you would screech and turn in circles. That was the day I first heard the word Autism. They both advised us to take you to your pediatrician. I was shocked but unconcerned because honestly had no idea what was in store for your future. I made an appointment for you right away and prepared a huge list of concerning behaviors. Your doctor listened to our concerns and reviewed your chart and decided that our concerns were valid. You had several appointments. First he thought you may have a hearing problem since you were plagued with several ear infections. He also referred you to Childrens Village to see a neuro development behavioral specialist. We were able to see ENT first who said you had such thick inner ear fluid you had hearing loss and putting tubes in would correct this. He also stated you would be able to catch up on your language skills once this was done. He was wrong. We got your first visit to see Dr Leibe at Childrens village when you were 16 months. She was amazing and told us you had classic Autistic like behavior but you were too young to diagnose so was placed under a umbrella of several global delay diagnosis. Your dad was shocked and dismayed. I wanted to start treatment right away so you were placed in a birth to 3 program and several therapy sessions such as OT, PT, speech, and at home therapy program. I stopped working and carried a lighter load at school. Your dad couldn't handle it all, he drifted furthor away and eventually stopped going to your appointments. At this time I was still in school, working part time and juggling your medical appointments. You were breaking my heart everyday, I would take you to the park and you didn't know how to play with the play ground toys. You had picca really bad and would try to eat everything. You would scream and scream. I couldnt take you on a walk because you would get fixated on a fence line because of the pattern. When you reached the age of 2 you were officely diagnosed with Autism and your dad cried hysterically. By this time you had been kicked out of 2 really good day cares. This was the year your dad left. I was still in college and working part time. I was still working closely with your therapy team. When you were 3 the services disappeared. I had to set up my own treatment plan for you. It's like the system just stops when you turn 3 but your disability is still a constant wall that blocks your ability to function. I realized that when your dad left I had to sacrifice your therapy or my education. I switched from the nursing program to the medical assistant program since this was mainly online and class times were more flexible. On top of this I had you in a special preschool class, therapy, and had made my way through the SS and DDA rec tape to try and get you more services. Trying to balance a broken social, government system with my child's broken mind was painfully exhausting. I have developed depression and anxiety something I never thought I'd experience but I was smart enough to seek help. My family has been a there on the sidelines offering love, support, a ear on late night hysterical cry feasts while my son sleeps. I carried every year and to date this chest tightening anxiety that what if I am not doing enough? You my wonderful boy, my monkey, are worth every late night. I at times wonder blissfully what my life would have been like if you had never been gifted to me. My thoughts linger painfully over the fact that I would not be me without you. Those moments pass quickly since I have bigger things to waste time on. The fact that our school system is way behind on working out a program for kids like mine. Believe me there isn't going to be less kids like mine, not with the numbers of children being diagnosed. Also the fact of services dropping when a child reaches a certain age. My son is lucky that I don't give up easily and nagged, pleaded, bullied more services for him. My child has been kicked out of every qualified day care in town. I fought hard to get him care giving services through DDA. I have to sweat every time I get government budget cut notices. Does it make sense to cut services to the most vulnerable and under served? I am extremely fearful of the future for my son. I went to one of the meetings with are legislatures, I was dismayed that they focused mainly on thefe campaign word vomit that it was useless to continue talking with them. They cut what little services parents like me get we will have worse issues as a society. We will have under served young adults that are left in the cracks of society with the potential to be violent, abused, taken advantage of flooding our already over flowing broken mental health system and judicial prison system. What now? Did no one see this coming. I did and continue to stress and worry about what to do for my son. He is now in school in enclosed class room since he can not function in a regular class. But what will happen to him when he reaches middle school? They do not have enclosed classes in middle school or in high school. I will continue to fight for services for him. We as a society need to ask these questions znd help bring a change. I love my wonderful boy, my monkey, but I worry that his future my not be as bright as I would want it.
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