This Is Our Life

Skipping a few chapters, today my daughter is 5 1/2 years old and in Kindergarten at a school for hearing impaired children. She communicates solely through the use of ASL (American Sign Language) and she wears the processor for her cochlear implant every waking hour without struggle and she has quite some time now. She is the pickiest eater I have ever met and getting her to eat nutritiously is a struggle. At school they feed her foods I don't approve of such as fries, chips, fried chicken, etc. It's out of my control what she eats at school and that frustrates me as I see my daughter who used to be in the low percentages for weight now weighing over the 50% percent level. She didn't become potty trained until she was 4 years old and to this day she still wears a pull up every night to bed. Some nights she is dry, other nights she is not. Bedtime is still a struggle. Her grandma must lay down with her every night in order to get her to sleep. She throws her toys everywhere and is very reckless/careless with her possessions. Getting her to clean up her messes is a nightmare. She takes her brother's toys off of him while he is playing with them and then throws a tantrum when she is disciplined for doing this, as if she doesn't understand she is being wrong and her actions have consequences. She cannot talk and makes noises, usually in play or in objection to something. These noises can cause me headaches and embarrassment in public as they sound like noises a mentally retarded person would make. Taking her to public places is like gambling these days. You never know if she is going to behave herself and keep her noises to a minimum or if she is going to scream and throw herself on the dirty floor when you explain to her that you're not buying toys and candy for her that she wants. My mother still continues to try controlling this situation and acting like my daughter is her child even though she is only her grandchild. Sure my mother helps deal with this child a lot, but I do not agree with her ideas on discipline as it lacks structure, rules, and reason.

As for the A-hole that is her father, he has been in and out of her life since she was a baby a few times. He has always gotten behind on child support and always put himself first. He has dropped in and out of college and gone from job to job and lived in place to place. From Christmas of 2006 he has been in her life and shown interest in changing his deadbeat ways and maturing. He has been seeing her on his days off, for the most part. But of course he isn't helping with her in the ways that he should. You figure there's 168 hours in a week. He is seeing her roughly 7 hours, which is around only 4% of the time in a week. She now attends speech therapy through Children's 2 days most week and it has become his job to take her there. This saves me a lot of anxiety honestly, but still it is not enough for his half. Now he is working a different job where he has off on Sundays and she doesn't have school on the weekend. I have had to suggest that he take her from Saturday into Sunday overnight, he couldn't think of this himself. Her father give my mother and I much disrespect and lack of appreciation for all that we have done for his daughter. His family also irritates me because they love children and they all shower the other grandchildren/nieces/nephews with attention and my daughter misses out on that because her father doesn't have her more. Here I am struggling to raise a special needs child as a single mom and he has this huge support group of family waiting for him to have her so they can help out with her. Is that fair? My mother is driving me more insane all the time. I have come to accept the fact that I will not be able to handle taking my daughter when I move out on my own with my son. I also will not allow my daughter to stay here with my mother. There's a few reasons for this; 1. she is not my mother's child 2. she can't provide the proper discipline 3. her father has that large support group, not us 4. it's not the right decision for anyone. My mother seems to think differently of course, yes that's right, she doesn't want her granddaughter to move out to live with either her rightful mother or father, she thinks she should keep her instead! That's beyond ridiculous but the truth. I have addressed these issues with her father and he sees my point on things even though we don't get along very well due to his lack of respect. In a few months if all goes accordingly, my daughter should be living with her father, I should be out on my own with my son, and my mother can be all alone realizing the wrong she's done in trying to control the situation with her granddaughter for the last time.


Of course I have documented some of the things her father has done and I am posting them as my sort of vent here in the meantime. I am keeping this blog to discuss the drama of this crazy situation.

Life Ain't Always Beautiful Pt. 2

Life continued to be crazy and anything but normal. My daughter's behavior grew worse and worse. She would throw herself on the floor for any given reason of not cooperating. The communication barier was beyond frustrating and added to her outbursts on top of other reasons including her stubborness. I started researching signlanguage online and her teachers that came from Early Intervention worked with us as well. It was all very overwhelming but we got some of the basics established and it helped this child to communicate some of her needs to us a lot easier than screaming and throwing fits. Still her behavior was a nightmare at times. She wasn't a baby anymore and she didn't want to sit there in her stroller or a shopping cart. She didn't want to be carried or hold your hand while she walked. She wanted to run off and do her own thing. Whenever you chased her down and picked her up she had a fit. You couldn't explain to her things like you would a typical child so it was beyond frustrating for both her and us. It was embarrassing the outbursts she would have in public places. Tantrums, screaming, outbursts, more than any other child I have ever seen. It got to the point where I tried to not even take her to the store with me to save myself any remaining sanity I had left at that point. I loved to shop and it used to be a great stress reliever but taking my daughter shopping with me was just a nightmare. I tried everything I could do to calm her behaviors or redirect her attention. Everything I had learned in early childhood education classes were a complete and udder waste with this child.

At this point in my life I was also in a verbally/emotionally abusive relationship and found out that I was pregnant with my son. I had so much going on to deal with and I just wanted to scream sometimes. When I found out I was pregnant, the first thing that came to my mind was having another child with her condition. I had many fears but I knew deep down everything would be ok with this baby. Still, my daughter was now turning 3 and Early Intervention stops at this point and special needs education starts outside of the home at a school that suites your child's needs. That means I had to look into preschool options at schools for hearing impaired children. We toured her school and I had yet another anxiety attack that caused me telling the staff that I was feeling dizzy and lightheaded so I needed to sit down for a moment. My anxiety attacks I tried to conceal and yet sometimes I couldn't and I was embarrassed.

My daughter started preschool Monday through Thursday from 8 am till 3 pm and Friday from 8 am till noon. This was a much needed break for me. I had time to clear my head and have help with this child that I had lacked for all this time. It's not easy by any means to raise a special needs child and you need a large group of support, I cannot emphasize this enough. Her behavior on the other hand only got worse. She became beyond picky when it came to eating and it was a constant battle. She was 3 years old and still not potty trained. It's not like we didn't try, they even encouraged it at school. She was beyond stubborn about everything and this was no exception. Bedtime was an even bigger struggle. She was too big for a crib, yet she refused to stay contained in a bed. When she had to wake up that early for school everyday, of course we needed to get her to bed earlier and in some sort of routine. Juggling my bi polar boyfriend, pregnancy, and my special needs daughter was more than I could handle and I worried constantly about my high stress levels effecting my unborn child in me.

Life Ain't Always Beautiful

I live my life day after day to the same reoccurring nightmare. This is my life as I have come to know it. There are days when I don't want to wake up, when I wish certain issues would just disappear. I've been through a lot and yet many people fail to take a moment to begin to understand before they dish out their harsh criticism and judgment. I have made mistakes in my life as we all do. But I feel that saying "God doesn't give people more than they can handle" is a complete lie in my opinion. I ended up pregnant at 17 to the biggest loser in this nation and having our daughter 2 months before I graduated high school. I was still a child myself and now I had a child of my own. I gave up college to take care of this child as I didn't have a support group of family and friends that doubled as free baby-sitters that many girls have who find themselves in my situation had. We lived with my mother who worked all the time, and crazy hours too that I couldn't schedule anything around. I felt so alone, so lost at times yet I managed. The father was a total deadbeat and his mother didn't care either. I filed for child support when she was 3 months old and he had the nerve to embarrass us with saying that he needed a paternity test. Until that time he never bought one thing for our child. Of course the results came back with what we knew all along. I was stuck dealing with his absence in raising our child and failure to pay child support regularly for the next 18 years. As my child grew she fell further and further behind in development of a certain area and I realized that something was seriously wrong. Her pediatrician told me to just wait until her next check up and if no progress was made she would refer us to a specialist. Call it mother's instinct but I knew something was seriously wrong and we couldn't wait. My child would not talk and didn't seem interested in sounds. Early Intervention became a part of our lives. The initial misdiagnosis of her condition thanks in part to a total ditz at the hearing center at Children's Hospital in Pittsburgh made things even more frustrating. It wasn't until months later that we had the proper diagnosis. I was only 19 and being told that my child had severe to profound hearing loss in both ears. I remember I started feeling light headed, dizzy as the room started spinning and my chest became tight and heavy making it difficult to breathe. My heart was pounding very fast. I felt like I was going to pass out so I sat down as quickly as I could as I had one of the many anxiety attacks that come from this heartbreaking situation. They tried hearing aids, but those were a big joke. The only function they served were huge, hideous earrings that didn't help my child to hear. Things were worse then n I could have imagined. I was beyond depressed and hopeless. It was hard enough being a teen mom with a typical child and now I had to deal with this. It just wasn't fair. My child had to miss out on having a father and on top of that have a disability. Life was anything but fair.I thought the situation out from every angle and figured out that I thought the best decision for everyone was to put my child up for adoption. She had needs that were out of my reach. I didn't have the means to provide the best care she deserved. I wanted the best for this child whom I loved. This wasn't me looking for the easy way out or being selfish. This was me trying to be responsible and caring. I figured that an older, stable couple would be able to give this child a much better life that I ever could, especially the anxiety and depression that situation brought me that prevented me from being the mother I dreamed of being. I told my mother of my ideas and she wouldn't hear of it. She threatened to disown me and all she could do was sob like an insecure child and say things like "you're not giving her up for adoption, that's MY grandchild." Acting like she had a say so in this matter, when all she was doing was thinking about herself and all the selfish reasons of holding this child back from having the best life she deserved. I tried to be the good mother I dreamed of being, but it was too hard for me. I would take my daughter to playgrounds and Chuck E. Cheese, pumpkin patches, and the mall. I would see all these happily married mothers with their typical children taking for granted all their blessings as they communicated verbally with their children. I developed a lot of anger among other feelings. I felt so alone trying to take care of my special needs child while the rest of the world had their lives go perfectly it seemed like. Therapists from Early Intervention would come to our house and work with my daughter a few times a week. It helped to develop her concentration skills and teach her some basic signing, but the results weren't even close to the goals we had hoped for. I researched cochlear implants and I knew that it would be the best decision for my daughter, in hopes that she might be able to hear and someday speak. It was heartbreaking taking her to a specialist and being told she was the perfect candidate for a cochlear implant, being tested by audiologists to determine how extreme her hearing loss was, the trips driving down to Pittsburgh with a screaming toddler strapped into a carseat in the backseat, walking through parking garages into a hospital or doctor's office. Finally in the beginning of December of 2004, when she was a little over 2 1/2 years old, she had surgery and had her cochlear implant. I was 21 when I had to sit in a waiting room while my toddler had surgery while other people my age were sleeping off the night before. The C.I. wasn't a sudden solution as some may think. It took a few weeks after surgery to heal, and when we they were going to turn her processor on for the first time an infection was discovered and forced us to wait another few weeks. She was scared and refused to wear her processor for a long time. She gave us more trouble than they've ever seen a child give in resisting wearing the device.