Our journey.. It began in April with the birth of our daughter. She was average size 7 lbs. 4 oz. She had really wonderful apgar scores too. I remember my mil saying that she was going to be perfect as her first test came out high scores. The only real concern was when my water broke there was a little blood in it. So they had the NICU staff ready in case but the NICU staff weren’t needed.
You could hear her cry all the way down the hall to where they took her followed by her father to do the foot prints and things. I had to have stadohl as an epidural was not an option for me since I have poor feeling in my feet to begin with. I think our first indication that something was going to be different was when she hated to be wrapped tightly. She would scream like she was in pain that would end immediately after you loosened the blankets. When the nurse took her for her first bath, dh & I could hear her screaming. She was all the way down on one end of the hall & we were at the extreme far opposite end. Every one agreed she would be a good opera singer some day as she had power in her voice.
Things were pretty good until the 2nd week began. I had to go back to school to finish my secretary training as finals were only 2 weeks away. The night I had to seriously start hitting the books for finals the colic came. For some odd reason during that time I was craving dairy products and pretty much lived on milk shakes with molasses as I couldn’t get enough of them. I just plain craved milk & ice cream. A friend of mine who was an RN and had agreed to be our babysitter stopped over one night during a really bad time with the colic. She asked some questions that at the time I thought was goofy but I heeded her advice & stopped all dairy products and the colic lifted in it’s intensity. It never went away but it eased.
The next bad case was when she was 3 months and I had to have an emergency dental surgery and with no time to prepare had to switch her to formula and a bottle. She didn’t do good until we found some really expensive preemie stuff. She could handle the preemie formula but not the stuff in the stores. Unfortunately we weren’t able to afford it and my friend who gave it to us in the first place only had a few cans on hand from weaning her son which she had given us already, so we had to tough it out with the colic until she got used to a soy based formula. It never truly went away but it lessened into a more bearable state. I mentioned this to her pediatrician and was told that it was all in my head.Looking back I see that I shouldn’t have let myself be bullied into thinking I didn’t know what I was saying. I believe now that this was the another glimpse at the road ahead.
At 8 months she became fascinated with National Geographic program with Spin. The show that reached her was on Lions. By the end of the show she was trying to say Lion. A friend video taped the show and brought it by as she thought that it was good to get an educational jump start by watching these types of shows. By the end of the week of watching the show her first word was Lion. I was so proud of her. I can’t be sure when she walked as she was walking for the babysitter and others before she would for us. It was 2 in the morning and we had just gotten off work and sent the babysitter home when we heard a strange noise coming from the monitor. We tipped toed down to her room & peeked in. The strange noise was her walking the length of her crib causing the mattress to crinkle. When she spotted us watching her it was the saddest sight. Her little face fell and she laid down & went to sleep. Upon awaking, she walked for us, too.
Around this time people started noticing that she didn’t like to make eye contact and that she became passive. You could sit her in one spot and she wouldn’t move from it. Her speech took a sudden halt and then went to stopping and only rare grunts. It was easy to keep the house clean as I didn’t have a toddler tearing it up. She could care less about things around her. There was a movie on lifetime that a friend was watching and she called me told me to watch it too. I don't even know what the movie was named except that when it was over my world came crashing down. The little child on the screen could have been my daughter. It was at that moment that all the little nagging worries jumped out at me. My daughter had stopped. There was no cheerful face greeting me in the morning, no mama, no hand tugging to lead me on some grand adventure, none of it.
When the better babies social worker came the next day I confided to her what I had seen, noticed, etc. I asked her what to do. She told me what so many others would tell me and still tell me. That I was a new mom who was over reacting and that all kids take 2 steps forward and 3 steps back sometimes to just let time take it’s place. Besides she might be coming down with a cold. I drove my point home a little more when I asked if she noticed where my daughter was now as compared to where she was when she first walked in an 1 1/2 hours ago. She hadn’t moved from her location by the window nor had she noticed the other person entering & talking to me.
At the 18 month appointment the doctor told me it was all in my head and that I was a new mom with a first child so it was OK for me to be paranoid over things but to let it go and move on. I was crushed. I started keeping track of the what she was & wasn't doing or weird things that she liked to do for example. Her top game with milk jug lids, the banshee type screeching over & over again for long periods of time, the violent reaction to hugs & affection. By Jan. I was no nearer to getting an answer and I was feeling like maybe it was my bad parenting skills. Well because of my growing concerns and begging the social worker for what should I do. It was decided that I should take her to the preschool screening in our area. If the screening said nothing was wrong with her then I was to stop thinking that there was something wrong and let it go.
I got the appointment in Feb. It was a hard one for me to do. Probably the hardest of all that I had to go through. See my husband had left the night before the appointment to go into the military and I wouldn’t see or hear from him for at least 6 weeks. He was very angry with me for thinking something was wrong with our child and had his mom backing him up (too this day she still believes it's bad parenting & figments of my imagination). At the appointment we went through several stations and my daughter was really good. She even shared her graham crackers with another child. I was so proud and really started thinking I was insane and should just leave without finishing as I was the one with a problem not my child.
Just before you can leave the evaluators score the results of the tests & then call you back for determination of what you should do next. The staff there told me that my daughter had a problem. And I blurted out Thank You. They looked at me like I was weird. But once I told them how long I had been wondering about what I was doing wrong and who the doctor was they understood and they set me up with help from Early Child hood Intervention or ECI. The staff also told me that I should have brought her in sooner as more could have been done for her and that I should always trust my instincts with my kids. It was nice to hear but I still felt guilty for not pushing harder or sooner.
Early Childhood Intervention started coming once a week to our home & working with her. The big thing was to get her to respond. Our first assignment do something, anything to get her to respond. The neighbors thought I was nuts banging pots and pans and crawling on my hands and knees blowing a new years horn, playing loud music, etc.
The worker would come with a book of stickers & she would sit by my daughter & talk about the stickers and we would have conversation regarding the characters in the stickers. Pooh was the theme of the majority of the stickers so we talked a lot about pooh bear & his pals. The worker would sing the pooh theme song. We would watch Disney channel to see pooh or tapes of pooh programs to reinforce.
After a really frustrating day of nothing going right at all, I had to go shopping and Target was having a sale so I took her with me to Target. We got our items and had to pass the toy section. On the aisle end cap was a big display of Pooh bears and other Pooh Characters & items. As we passed another child was having a screaming fit over not getting one. I don't know if it was the temper tantrum or the colors that caught her attention but she looked at the end cap.
I mean really looked. The fog that was so often over her eyes lifted and mouthed a word. It came out oooh but I knew what it was in my heart I turned around & went back to the end cap & pointed to pooh. She pointed and said ooh. I didn't know whether to laugh or cry.
I wasn't sure what I should do. I would have bought the stuffed pooh bear if I could have afforded the $25 for him. The next day when the worker came she got a surprise of hearing my little girl struggle to say pooh. That was the first word in her vocabulary. It was the first step back on the road to our world. Three days later she turned 2 years old.
*****
Not to long after this break through new challenges started to happen. Because she was making sounds, she started speech therapy. But the speech therapist wasn’t able to make to much progress and we had more issues. She didn’t like to do the exercises & would come unglued with certain textures in her mouth. Her dad was still gone and things started to fall apart with the daycare she was in, I was stuck working longer hours to make ends meet and started to come out of remission and get sick. She started to head bang, rock and get into fights at day care. She would go off and screech like a banshee at times and they couldn't get her to stop. I didn't know what to do. I asked the pediatrician and he told me it was because I was a bad parent and neglecting her by putting her in day care. He was also very furious for me going behind his back to the the preschool screening and then having ECI go with me to ask for referrals to speech etc.
Then there was her going to stay with her grandma (my mom) while I went to her Dad’s graduation from basic training. I had to take the bus & couldn’t see her handling the long bus ride to Georgia and back. While I regret not taking her with me to Georgia only because she & her dad could have reconnected and I could have had some time with her, I am thrilled that I didn't as it would have been the trip from hades trying to take her by bus. I barely made it without getting to exhausted physically and I can only shudder at the thought of both of trying such a thing. Especially since she didn't like routine changes, being confined, and smells.
Then we had the change change in workers with ECI. The new worker felt that she might have autism but the doctor wouldn’t follow up with it. Instead I was labeled with being a bad parent and told that I was the reason she was how she was. He also told me that I didn’t care about her or love her. I didn’t know what to do or whom to believe the doctors who said there wasn’t anything wrong with her or the worker who felt that there was a problem and it had a name of Autism.
The new gal was good but she saw my daughter as being autistic and wanted me to think of things that like institutions and foster care for her that I just wasn't ready to deal with. She was able to get the pediatrician switched. I was amazed when we went in to see a different pediatrician in the same practice. The gal observed my daughter for 2 minutes & asked when had she been diagnosed with autism and by whom. When I told her never she recommended a neurological eval.
ECI started a play group and that fell apart as she was too uncooperative, anti social and wild,. Her Dad came back from Georgia and so we had to get her use to him being around again. Then I had to have surgery & treatment for thyroid cancer which meant she had to go stay with my mom or my aunt again for several weeks.
Day care finally kicked her out for her inappropriate behaviors of spitting, head banging, her banshee shrieks, rocking and twirling (the joke from one of the workers was my daughter must be part trout as she acted like she had whirling disease.That joke didn't bother me as it truly described how she was acting and still acts at times now), & being aggressive with the other kids when she got mad at them.
She wasn’t making any progress in Speech and the therapist wasn’t sure what to try next.One weekend, mil took her to her house to show her a new computer game with Dinosaurs. She lit up. We asked the speech therapist to try using dinosaurs and it worked. With dinosaurs she was able to learn her colors and she started to be a walking talking encyclopedia. Even correcting a college professor who’s a paleontologist on a simple mistake.
We met with a pediatric neurologist and she did several tests blood & urine and EEG and by Dec. we were told she might have PDD. Nothing more or less. I didn’t know what it meant. The ECI worker took it as a good sign and was able to get her transferred into a school district preschool when she turned three and had to leave the ECI program. ECI only works with kids from birth to 3 years. It was again pointed out that we should have brought her in sooner as she would have had a chance to make more & better progress than she had.
****
Well now we enter some actual dealings with the school district so things are changing. She left ECI for a special Ed preschool classroom with our local school district.
She was placed in an enclosed classroom with kids with varying degrees of disability. It was a good mix kids and the teacher was awesome. The thing that really impressed me the most was her drill sergeant routine. She was tough enough not to be pushed over but so gentle as to cry at the smallest of accomplishments. She challenged me to let go and let her fly.
Another thing that really impressed me with the teacher is the stuff she had these kids doing. Ex. She did a lot of toast with jam or peanut butter for snack time. What she did was get tons of the big cookie cutters in different shapes and depending on what the unit they were studying was the shape of the cookie cutter. So when they studied dinosaurs she had dinosaur cookie cutters on hand & she would have the kids push them firmly into the covered toast to make the outline of the cutter. Then they would eat "Dinosaur Toast". For spring it was a flower shape and they had "Flower toast". To this day my daughter likes her Dino toast. (I must admit that while I loved getting my child to eat was great the cost of getting & keeping track of the cutters was a pain at home)
This is one ritual that we still carry on especially if one is ill or blue. Another example was the kids going on weekly field trips. Yes, they were weekly field trips to different places in the community. In the 1 & 1/4 school years that my daughter was in this classroom she got to go to a pet store, fire station, police station, bird rehab unit, a ostrich farm, pumpkin patch, etc. Every Thursday anywhere from 12 to 18 kids with adults and aids would load up on a bus and go on an adventure around our town. It would only be a short 3 hour trip for the most part but they would get to see something other than the inside of a classroom. K loved these trips & would do everything in her power to go on them. She only missed 3 the police station, farm, and an Indian heritage one at our local college.
She did well during her time with her class. The full year in Cheri's class was the best she has ever had. She made a friend who she stuck by & would be compassionate & caring for. The little boy had an odd name & she struggled to say it. So she often referred to him as her land (landon was his name). She would push his wheel chair & defend him from any all threats (real or pretend) She started to open up to our world & talk about things other than dinosaurs and she started to dream about being a paleontologist. Unfortunately her compassion and growth got her exited from Cheri's classroom. And the progress just hasn't been that remarkable since.
During the summer break she went to a special summer school that was held at our local high schools career center. It's a basic vo-tech school but for high school kids whom won't be going on to college and are looking for vocations. At this place is another good program a day care style and during the summer it’s the location of the special ed preschool. It's on a very busy (speed limit 45) isolated (no city sidewalks & just on the edge of the city limits) street as it's right next to the College of Technology and one of the many main streets through town. Here we started to have problems.
She was no longer in an enclosed classroom so she ran often. The furthest she got to was the main road which makes me really sick to think that it took them 1 hour to find her and the only reason they did was one of the high school students who worked at the center was coming back from a doctors appointment & noticed her & was able to get her to get in her car to go back to the campus. The head banging returned, and she started to stare off into space so back to the doctors I go.
One thing that bothered me was Cheri's comment that because K was compassionate towards Landon that she didn't have autism. This won’t be the first or last time that autism is mentioned and that she can’t have autism because she is capable of showing some compassion towards another person. Like bringing a Kleenex to a sobbing person or pushing Landon chair so he can go with them on a field trip. ( I am mixed with this as I believe that it’s possible to train dogs & monkeys to do things why can’t a child who’s exposed do the same thing. (I have MD, chronic fatigue & fibromyalgia and sometimes need to use a wheel chair especially for long shopping trips or outings do to fatigue issues) I mean she had seen me be pushed around in a wheel chair, had been told that I couldn’t go anywhere without being pushed in my chair for 3 years even rode in my lap during outings where I was in a wheel chair. She's had people stick Kleenex in her face when she cried often enough to get fighting mad so why not do the same for another doesn't mean she knows why its done she just knows it's done. She’s smart, she’s practical and she’s got compassion and I think you can have those & be autistic too)
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Next Step Head Start
While she was in the enclosed classroom she blossomed. The structured routine was wonderful and exactly what she needed. She jumped off the paper in tests several times the tester stated that they wish the test would have gone on as they would have liked to see how far she would actually go. She had made so much progress in the short time with Cheri that I am still in awe of that teacher Her future looked bright and we had hope. She still needed help but she was able to go on to Head Start like other peers. She would be in Head Start with Special Ed support.
There were two choices really that could have been made. A special preschool & I wouldn’t have to pay for it as long as she qualified but if she ever reached the point of making progress to where she didn’t qualify as a child at risk I would either have to pay $360 a month or she would be removed from the program. There was also Head Start. Head Start would take her no matter what and it was free. Since I wasn’t sure of where our next paycheck was coming from I chose Head Start.
More testing was done during the summer and a seizure disorder was discovered. Another reason to choose head start over the other school as the seizure meds weren’t cheap.
Looking back Head Start wasn’t a very wise choice but then that is always how hind sight is.
At head start she was learning but not at the rate she had been. She just couldn’t get what the other kids where doing. Her social skills were atrocious & causing major problems. K felt the strong need to defend herself and retaliate which was not good (although I can't say I blamed her in all of it).
When asked about what was going on it was always told that Kids would be Kids and not to worry about it so much. I didn’t have any medical reason for her behaviors so the teachers weren’t as understanding as they were with the kids who had a label. Not that a label really makes a difference (again another hindsight issue). I had her in counseling, had her on seizure meds to control the seizures and on other meds as well to help with her behaviors but things just weren’t working out.
Her councilor called a team meeting and it was then that we learned about her attacking a peer with a snow shovel on the playground after he took away the paints she had been using during art time and ripped her painting, it was then that we learned about her being a bully to anyone who took her items or bumped into her or got in her space, it was then we learned that Head Start was seeing seizures & that K had tried to hurt the teacher, it was then that we learned that all the work that Head Start said they were doing on her IEP wasn‘t being done.
At this time I was physically unable to go to her classroom which was upstairs. I also didn’t have reliable transportation so a pop in visit was out of the question as any time I had need of a vehicle it required lots of negotiating and scheduling. I felt like I totally had let K down. I remember that meeting with such shock & horror as the councilor questioned the different staff people at head start. By the time he was done it became clear that she wasn’t in a good place but in a place that didn’t know how to handle her and help her learn.
The head of the school district special ed with Head Start scooted away from the table & held her head down failing to make eye contact or to be vocal during the rest of the meeting after the councilor got done questioning her. Things changed after the meeting.
K went through testing and it was absolutely horrifying to see the results. The little girl with a bright future only a year ago was now a little girl who had a very different picture. She lost so much ground that the testers from last year where questioned as to if they had really done the testing.
In my heart I know that they hadn’t done anything wrong with the testing. My hopes and dreams lay crumpled in a heap. It was also at this time that another word came out about us and we got labeled. I was starting to be considered a trouble maker and that’s not good. Head Start is a place that really is wonderful for kids that don’t have special needs. I highly recommend it for “NORMAL” Children just not for any kid who has any sort of a problem no matter how mild or severe. Head Start had left her behind. Since there was only a month left she finished out & graduated with her class.
Now there was a new dilemma. Where to send her for next year? Kindergarten with no support or Special Ed Preschool? Would it be bad for her to start school at a later age or would it be better to keep her on track? Tough choices.
Because of how bad she did at Head Start especially since her speech had deteriorated over the year it was decided to give her a chance to regain her speech so that teachers & peers could understand her and hopefully things would be more positive than what had been at Head Start, It would give the Kindergarten teacher more time to prepare for her and so off she went on to special ed preschool.
*****
Family
From here the story will get a little more complicated. Some more intense interactions with the family starts to interplay. K’s little brother L is born. She had for months told us she wanted a brother and is proud to be a big sister. I feel relieved as I am able to weasel out of one battle so easily because she got the boy she asked for. I had a rough delivery and being seriously anemic makes it hard for me to come back physically after his birth.
K’s a trooper she doesn’t understand it but tries to help in her way. She doesn’t regress like the doctors told us she might in fact if anything time seems to stand still. She’s a little rougher than she should be and has to be watched closely. Looking back I think it was more of an experiment as to what a baby is and does than to be really mean. Although her mean disturbing behaviors start do start to come out. I can’t let her be around cats as she has tried to hurt mil’s cats. Being L was a boy and normal he starts getting lots of attention from family members.
Family members who ignored K because she was a girl, different, or might have a seizure start to come around. More to see her brother than to see her. She doesn’t care as interactions with these people aren’t that important. I however do and it hurts deeply to see her pushed to the side by her grandparents in particular.
The good is dh starts making more of an effort to be involved but He still doesn’t want to see his little girl as having anything wrong. Now there are battles with meds for the seizures & behaviors. Battles to keep K from hurting L and the sibling rivalry start by the time L turns 4 weeks.
At 6 weeks for L, they are in the back seat of the car we are heading to a doctors appointment for K and she starts screaming at the top of her lungs. Make him stop. Make him stop. He was looking at her. The beginning of the classic back seat battles of he’s looking at me, he’s touching me, etc. It’s funny in away when you look back, such normal sibling behavior but it’s so hard as she doesn’t understand that he’s doing what babies do and not doing it to pick on her.
After one particularly bad battle dh comes around to our side. Dh agrees that we will disagree and that he doesn‘t want to go to the doctors etc. He’s torn between what he sees and what he hears from his mother and my family. His own bad past experiences, his fathers death and his mother keep him locked in the grip of denial & fear.
So often I must go through things alone. Leave him a message or corner him late at night with the details of what’s going on. Be it good news or bad. I can’t ask his opinion or for help as he’s not there when the decisions are needing to be made. He resents that and a part of me does too.
Only I resent that fact that there was no other way. I couldn’t pick up a phone or call the red cross to get the messages to him when this all started. He was in boot camp. Trying to make a better life for us and I was trying to hold the fort down so he’d have his little girl to come back too.
All I could do was go forward & hope it wouldn’t hurt us to badly. But unfortunately it’s lead to us not being able to be untied at appointments or with meetings or other decisions, I am stuck having to speak with him and get back to the others waiting for the decision. I also don’t like the fact that because of his need to work that he can’t be around for fear of losing his job.
But at least we are talking and he’s up to speed for the most part. I am afraid that if anything happens to me he’ll be totally screwed with the care of the kids. It’s funny how having cancer & fighting it made this crystal clear and stand out in my mind. What got me through was my little girl needed me plus having a very easily cured cancer.
Things start to get rough for us. We are about to enter a period of extreme grief that is unbelievable. I am working at a job that is physically too much for me but I can’t get voc rehab to help me get another one even though it‘s suppose to be temporary. I‘m on year 2 of my temp job. Just another lame promise of this is only temporary and hang in there. So my being exited from the program should come as no surprise to any of us neither should the shock of how fast other ground for me is being lost.
I can no longer ignore this fact. I now how two kids, a job and my health is starting to fail. I don’t know what to do so I try to find another job. Meanwhile, circumstances change and I look at having my grandma & aunt move in with us. Nothing new here when ever I needed serious help they would come and stay but now it’s more permanent.
It’s sad and I feel the strong desire to keep my promise to my grandma that I made when I was 4 years old. That I would make her last days as comfortable as possible. Dh & aunt hate each other so things are well in that corner. My mom is getting worse in her mental behavior & my step dad is as mean as ever but at least they are rallying and supporting us. They don’t approve of how we are living but they come to visit & try to help were they can.
My aunt takes over some of the routines that I struggle with. It’s amazing but since she starts cooking, I start reducing my accidents. I never realized how much trouble I had in the kitchen. My health starts to turn and so does grandmas. I am forced to make decisions about my parents and again I face it alone. I try to get dh to help me and he does try but he can’t stand up by me nor beside me and that sets problems for us off in another direction.
I am forced to make a decision regarding my parents. I fight for my mom to get medical treatment. The missions begin to save her life, to confront old demons, and heal old wounds starts. Because of L I have a vital weapon in my arsenal to use and I don’t hesitate to use it.
See in my parents eyes I was never good enough because I had a health problem that embarrassed them and I was a girl and then I got married to a guy whom they deemed to be unworthy and had a girl with problems whom my mother adored but my step-dad couldn’t see the value in. So by having a boy I was redeemed as worthy to be in their life.
The next 2 years are a whirl of blackness. K was getting worse and no one would listen, L started to have problems, Grandma was diagnosis with Parkinson's and is beginning to slip. Mil starts having problems with the fact that my family is around so much. She starts pushing dh’s buttons. And I don’t take it but push him back. In the process the roof about came off the apartment.
First, I had Grandma & my aunt here. The deal was I would provide Gram with a comfortable place to stay and the chance to be with her great grandchildren. My aunt would help me do the stuff that I was struggling to do and keep the nosy at bay. Dh would do his thing and together we would survive what ever came. The plan worked for a little bit.
Then I had to add my mother & step dad to the mix. As my mother got so ill that I almost lost her 3 times. My step dad wouldn’t allow her to go to the doctors so I would have to beg dh to go with me as he would be the only one strong enough to carry her out of the house by the time we got there.
It was an hour up and an hour back as fast as one of us could drive. Usually dh would drive behind us with my step dad while I raced with my mom to the hospital praying I would arrive in time. I always did. Mom would be admitted, surgery preformed to unblock her intestines and released after a several week stay in the hospital. Only difference was that I would make her stay with me for a bit afterward.
Then dh’s beloved grandfather gets a diagnoses of lung cancer that has spread, his fight to stay with us, parting grace that he & my dh found towards the end, and then his death. Grandma was failing too and we weren’t sure she would make it and My mom was starting to get weird again.
My Grandma’s health then starting to fail and my aunt started turning into a witch. The tension runs high as nothing is what it seems. The kids seem to remain stable yet the problems are non-stop and I am back to seeking treatments for my daughter.
All I want is someone to listen & help me help her. I can feel my family is slipping away and I don’t want my little girl to go with it. It was alarming to see what was happening to those around us. While we are dealing with the fact that Grandpa’s time has come my step-dad gets way out of control and my mom just takes it. I had to ask for help from visiting nurse services as I was clueless about how to do shots and blood sugars. Not that I didn’t understand the basics I knew that as had been around it most of my life but I didn’t know what to do about the lows and highs.
So instead of running to wake mom I was taught by the nurses and given the help we needed. They suggested an elder assessment and while we are waiting Grandpa loses his fight.
The elder assessment stated step dad had dementia and needed help. That was a blessing and a curse as the state was able to find an elder care person who could help me get him into a nursing home and to help my mom and me keep him there while he recovered with a broken leg.
Unfortunately this provided a new worry as my mom’s mental problems started to show up. She was badly addicted to the pain drugs, felt the world had turned on her, and didn’t know what to do. She tried to be strong for dh in losing his grandfather and she tried to ease the sting she felt my mil caused us. She was there for us when my Gram passed on a few months later and she helped us in the end to make her comfortable but it didn’t bring mom the peace she so desperately sought.
Mom even helped us get through it when dh’s grandma died suddenly a year and a month to the date of her beloved husbands death. All the intervention that was done for my mom managed to do for her was leave her spending a few good moments with us but those weren’t really great moments.
The years of abuse had taken there toll on her. She couldn’t be separated from my step-dad and so she made herself sicker by being on a constant bedside vigil. In the end over a misunderstanding about the kids riding with her in a car while she was under the influence of the pain meds, she left my home for the last time.
She ran back to my step dad and hardly left his side. She got hurt and never called to tell anyone. She had stopped returning my calls so I didn’t know how bad it was. Everyone I asked told me to give her space and time and she’d contact me.
Two weeks later I was called to the hospital to make the decision to turn off the machines keeping her alive. Her death is hard to accept as there was some bad stuff between us. When she left me she said things that hurt to the bone but that I now see as her finally being honest with me after 30 years of lies.
I am thankful that K & L didn’t understand the words that they over heard or what was happening or they might have had a harder time saying goodbye to their grandma. The really sad thing is with her death a beautiful thing happened. A doctor listened to me.
I mean the doctor really listened when I explained that it was so hard with out my cheerleading section. Both Gram & my mom and with both dh’s grandparents being gone, left me with no outside cheerleaders. That in a 3 year period of time I had lost my total outside support system. There wasn’t anyone I could turn to anymore to share the joys, the downs, etc. Dh had walled himself up with the pain of more loss as the only people who had ever cheered him on or advised him to stick it out with us was gone now. The anger & resentment about me chasing my mom and her death left him unable to open up to me or be there for me.
I in turn took it as his disgust of me for making a mess out of everything.. Only his mom was left and she was very spiteful towards us. She went back to how horrible the kids where and how I wasn’t a good dil. See it now as partly how she is and partly how grief plays with the emotions of others but still calling us (me, K & L freaks of nature... really hurt).
The doctor asked why my mom died and when I said I don’t know the actual cause just the reasons. He looked shocked. A box of Kleenex later he told me to get her medical records, and to ask the front desk for his new patient package and to get all of K’s records to him. He was going to look in and see if he could help us. I thought he was joking. No one had ever offered to help us before. I said it’s just me being a bad parent and he said no it’s not. Your a good mom and I think I might be able to help you. It was the first time in 7 years that I had hope for myself & my kids.
I was also able to have hope for a future.
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Bonnie’s Class
As the new school year rolled around, K was excited to be back to riding the school bus and not going to head start. She was a little upset about not being in Doretta’s class but glad to be away from Head Start.
The major change for this year is we were back in a structured environment with a teacher who was better prepared for K and knew what to do. There were days that weren’t so good do to the seizures but even that was handled smoothly and appropriately. Speech therapy resumed and progress was made. We had issues with getting her on the bus but nothing compared to when she went to head start. K started to regain much of what she had lost while in Head Start. She did amazingly well considering how much ground she had lost. Just showed the power of a good teacher and positive classroom setting.
As the IEP time got closer to being held the teacher spoke about her goals and what she thought would happen. In her opinion the Kindergarten year would be a turning point for K. She strongly felt that it was in the best interest of K to go to the morning Kindergarten class and then ride the bus to spend the afternoon with Bonnie. It would make for a long day for K but it would help K to make the transition to school and reinforce her social skills that still were in pretty bad shape.
The shock came at the IEP meeting. First the youth case manager assigned to K was over 30 minutes late for the IEP. Second the PLUK representative who was to attend this one didn’t come at all. Something about other meetings and trainings that had snuck up and were more important than the IEP. (I remember joking with my mom that I bet no one comes as that’s how it had been for all of K’s IEPs the ones who were to come and help advocate for her always disappeared to other IEPs or meetings or training at the last minute & never show.)
Well, we repeated it. Instead of the plan that Bonnie, Doretta, and I had worked so hard to outline for the IEP was tossed. The testing was improved by an 1/8 of a point over so she didn’t qualify. She made speech progress to age appropriateness and didn’t qualify any longer except to be monitored for regression. The school councilor said her part and that is when Bonnie got mad and spoke against the councilor.
Turns out the councilor had only come once to class and had observed K for 15 minutes. During that 15 min observation there were no problems so she couldn’t recommend her continued placement. What the councilor failed to note and wouldn’t accept the teachers input on was that it was 15 minutes of observation where K had just been returned to the classroom after having a particularly hard seizure and therefore K wasn’t acting like her normal self.
I exploded that it wasn’t fair, seconded by Bonnie and by the speech therapist Sue. In fact they weren’t happy at all with what the school councilor had to say. It was the first time the terms ADD and Oppositional Defiant Disorder had come up. As the councilor admitted to seeing those in the 15 minutes. In the end I didn’t know what to do.
I called PLUK to find out what to do. I asked the case manager what to do as it didn’t feel right. The principal was kind and he requested that it be written in her case that he felt strongly that K was a child who was falling through the cracks and at HIGH RISK in not having an IEP in place. However, there was nothing that could be changed mostly because of an 1/8 of a percentage point gain. (Hind sight: I later learned that I shouldn’t have caved. I should have protested & refused to sign the forms and I have been haunted by this mistake for years) K had just fallen between the cracks of the school system. Who knows if she would get pulled out in time.
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Luckily the Kindergarten teacher had two years to prepare for K’s arrival and she used that time well. She wasn’t happy about going it alone with K and she took steps to make it the best year K would have at her school.
She knew when to push K and when to let things go. Unfortunately that did both good and bad things. It was good cause K had a positive school experience but it was bad because K was let to slide so much that it’s made her have problems with peers and with her future classes. Had the teacher pushed K then she would have been right back on to the IEP but then this hind sight. K had already done 3 years of getting ready for Kindergarten in her preschool settings and was quiet bored with Kindergarten. This was good as she was successful in most of her undertakings but it was bad because she was more of a disruption to the rest of the class.
Again we didn’t have a name for what was happening so it was hard to explain to the others. Her lack of social skills, tendency to be a dinosaur or other animal or worst yet a walking dictionary set her up to be teased and picked on by her classmates & peers. Her knowledge about diabetes because of my step dad being a diabetic caused her to be over protective and to have panic attacks when her fellow classmate was diagnosised with the disease. As a parent I thought it was sweet that she cared enough to be aware of this peers health problem. Although I will admit to wishing she’d had picked a better way to tell me than dumping her cupcake treat on the floor and biting me the night before her class party. We saved the day by taking unsweetened applesauce instead.
We also had to leave school for a week so that K could be in the hospital and tested for seizures with a week long EEG that was video taped and auditory recorded as well. That was not a fun experience for us. First, she was confined to a room with wires all over her head and had very limited mobility. (not good with a child hwo needs to move around) Second she was having mood swings that were extremely rapid and intense, she‘d be happy one minute and angry the next and try to hurt whomever she could get close to.
My mil got a really good taste of what I had to put up with K on a daily basis. She got such a good taste that it took her a long time to want to spend any time with K after we got home. Even the hospital staff got to see K attack us and do her autistic tendencies. Instead of the results being positive and working towards getting her help for the autism, it just strengthened the label that I was a bad parent and didn’t know how to handle my child correctly. No seizures were found.
That really surprised me but it didn’t my mil as K wasn’t reduced off of all her seizure meds until 18 hours before we left. She never went back to the seizure meds and also started to be weaned off all of the other meds she had been on. The behaviors got worse and yet better. I think what got better was K wasn’t so groggy any more. We started back up in counseling with another councilor as K lost her Grandmother who was living with us. I wasn’t sure how to reach her and help her with the loss of someone who had always been around in her life so I opted for a councilor to maybe be able to help us.
K didn’t do a whole lot of learning this year. Mainly I feel it was the boredom of repeating so many of the same things for the 3 years in a row that impacted this. Along with the meds she was taking for seizures she apparently didn‘t have. Because she wasn’t as groggy after the meds stopped. I honestly can‘t say the seizures have stopped as there are times when it sure looks like she has them but as the test didn‘t show them at all then I must say they don‘t occur which doesn‘t set easily with my conscious. Especially when she stares off in space and wets herself.
As summer rapidly approaches even more changes occur. The doctor (Alan) who has been treating her little brother asks to see her medical file and sets up an appointment. He thinks he might be able to help us. We are also bumped to the top of a waiting list for a new psychiatrist (Ralph). I am nervous about the new doc on the team as so far I have had no positive experiences little did I know how rapidly that was going to change. Also K’s new case manager Becky is able to get some of K’s medical records that haven’t been viewed before and the information contained in them is very disheartening.
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We made progress during the summer months. K found out that she likes to play soccer and swim and she was accepted into a t-ball team for kids who have disabilities. So she got a new outlet for her energy and even made some positive peer interactions on the t-ball field.
The new psychiatrist Ralph took to K right off the bat. He was immediately concerned by what he saw and angered by how she was falling through the cracks in the medical and school systems. He started doing testing and thought he might be able to help her better depending on the testing results.
We got the answers to the test results just minutes before we met K’s first grade teacher Mary Jo. I remember having hope that the test results would help Mary Jo be able to reach K and actually help them both to learn. Boy was I naive to think that a label would help at all.
The next few months were a whirl wind of getting answers and seeing the doctors. My son’s doc had reviewed all of K’s records and discovered that she had been diagnosised with medical conditions but had never gotten treatment for them. Ralph also discovered the same thing. He also discovered why. It was something that an a very angry doc had put in the files. Why he did it no one is sure but the fact is its there and will never be able to be removed and it will haunt us for the rest of K & L’s life. The good news is there are two doc and another person who are willing to back that what is in the file is a lie and that it shouldn’t matter as K does has problems and those problems have been documented.
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Mary Jo, 1st Grade
We made some progress during the summer. A new doctor who came on board and made some recommendations for the school year based on the tests he did before school started. My first clue that the school year was going to go badly came from meeting the classroom teacher for the first time.
I took K with me to find her new room & meet her new teacher. When we walked in to the room K started to do her side to side hop an early warning that something wasn‘t right in the classroom. The teacher came over and wouldn’t even look at K as she introduced herself to us. She did show K where she would be sitting and tell her that she looked forward to working with K. She totally ignored me & my questions, as soon as she was done with K she went right back to her desk of papers.
I walked over to her and asked again if she was familiar with K’s history and that we had a new diagnosis on K. The teacher looked at me blankly and said no she wasn’t familiar with K, why would she need the past information regarding K, and what diagnosis could possibly mean anything to her. I told her that K had been diagnosised with ADD-ADHD combined form to a severe level. The teacher said so she’s going to be on meds. I said No!!! She won’t be on meds because the meds don’t work. (We had tried Ritalin, Adderol, etc. in the past for K and all the meds did was make her really violent or brought out really inappropriate behavior and did nothing for her attention) The teacher just rolled her eyes and said I would be changing to putting her on meds soon enough.
Well, needless to say K wasn’t ready for 1st grade, because of not getting extra help and her poor social skills. Also since she was one of the oldest in her class, K was expected to have better behavior than her younger class mates. What really hurt was that we were told that she was doing just fine by the staff at school but she would come home in tears, with bruises, grass or rocks in her pullup and was just plain miserable.
The teacher wouldn’t speak with us about what was really going on and K seemed to not really comprehend the work she was given. The big battle was the book a night reading. The teacher felt that the book a night reading should take 30 min. at most. Our reading took 5 hours on a good night to not happening at all on a bad night.
Alan had managed to go through all of K’s medical records and to get a copy of my mom’s autopsy report. He started making diagnosis's and recommending treatments. Also he found where K had been diagnosised by other doctors but the information had never been passed on nor had treatments been started. He quickly changed all that. For starters, he recommended the same diet that Ralph recommended. So we started the Gluten Free & Casein Free diet. We noticed an improvement in 3 weeks.
However, we had a major battle with the school. I took in several doctors notes and letters from both doctors regarding the new diet. I took in the same information to the teacher and food service people. Only to find out that K was still getting the bad foods and no one was honoring the notes. I eventually worked my way to the top of the food service chain only to find out that K wouldn‘t be allowed to eat school lunch anymore. She would have to take all of what was served or do with out as they don‘t make special meals nor do they allow children to pick & choose what is served.
I asked if she was a diabetic would the rule apply and was told that diabetics are an exception to the rules. As everyone knows that diabetics can’t have sugar. Diabetic children could refuse any sugar containing items or pick & choose there meals and still be allowed to eat school lunch. I explained that I wanted K to get the fruit & vegetables and juice drink that came with the school lunches. But as K would be refusing the Gluten & Casein containing items she still wouldn’t be allowed to eat school lunch.
So we started sending her lunch to school. However, K would take anything any other child offered her or traded even when she knew she shouldn’t. The school informed us that they couldn’t police her in the lunchroom nor could they get involved in what the kids were doing during lunch time. Either taking her lunch, slipping her things she couldn't have or teasing her for eating different foods than what they got.
So to keep her safe & on her diet we had to pull her for lunch. It’s sad that you can’t trust the adults taking care of your child to keep the child safe & healthy. (At the CST meeting we found out that the new diet was working. When she started 1st grade she was reading at below kindergarten level, she wasn’t making eye contact, her sentences weren’t very long and she tended to grunt for yes or no. After implementing the diet her reading skills jumped 8 levels making her at a first grade level, her eye contact improved, as did her sentences and she started acting more normal.)
With lots of pushing and much letter writing, we were able to get a referral to have her tested to see if she needed help. The CST meeting was a real eye opener in itself. We had help from a organization that works with parents to advocate for a child (pluk) especially with school issues. However, the pluk worker who was to come to the meeting never showed for the CST meeting. I know this shouldn't have been a huge shock considering the history with PLUK.
The new case manager that she was assigned had never been to a CST or IEP before so he was basically worthless. The testers all reported that she had problems but as long as she was in a fairly quiet, well lit room with little noise and animal crackers she did well but with in 1/2 to an hour of eating the animal crackers her behaviors got worse. When asked why she was given animal cracker the response was as an incentive/reward to stick with the task. When asked about why the doctors notes for a Gluten & Casein Free diet weren’t being honored. None of the testers were even aware that she was on such a diet. They had seen the doctors notes with her diagnosis but had either neglected or ignored the Gluten Free & Casein Free part of the diet. One even told me that animal crackers where Gluten & Casein free but had to admit upon further questioning that she didn't know what Gluten or Casein was.
The testers said that K had issues with her short term memory, attention span, and would probably not do well in the higher grades of 4th, 5th, and 6th. K would definitely need an IEP for 4th grade and above but not for now. That K was getting all the help she needed in her current setting especially since she was in a title one program. That the doctors hadn’t diagnosed K appropriately. So we didn’t get her an IEP but a very watered down 504 instead.
The principal & teacher let us know that we got what we deserved and that we wasted their time with the request for an IEP. The principal restated her comments that if K had what the doctors said she had then she would be in an institution not in school. I was very angry but held my tongue.
The school year kept getting worse for K. Because she had a tendency to head bang, rock, or tap her hands against her legs the staff felt that she was seeking attention inappropriately and also when she is talking about difficult issues she has a tendency to rock and doesn’t make eye contact so the staff felt she was lying about what was happening to her on the play ground. Also that if she truly had any of the diagnosis that the doctors where giving her , she would be in an institution and not in a school at all, I got this from her classroom teacher, from the school nurse, and repeatedly from the principal of the school.
I mentioned the rocks & grass in her pullup and was told it didn't happen. I even showed them the evidence and had K tell them what happened. I had to file a complaint after the 3rd occurance. There was an investigation and it was deemed not to have happened at all. I was there for the interview with K. K did what she always does when forced to speak about something difficult. She rocked, flapped her hands, & wouldn’t make eye contact. After K was excused from the room. The investigator said that K was lying about the incident & the case was closed. I asked her how K was lying when we provided the evidence and she said it was obvious K was lying as she wouldn’t make eye contact and wouldn’t sit still.
I asked her how much she knew about Autism and she said that she knew enough about autism to tell me that K didn’t have it. I totally lost it. I pulled out a copy of the doctors letters and handed them to her. She scanned them briefly and said the diagnosises in the letters don’t apply to K or the complaint. I then really lost it and asked her where she got her medical degree from.
She told me that I picked the two worse doctors in town to be in charge of my daughters care. I later found out that the peer who was doing this to my child has problems and has an IEP. That is why he was allowed to slide. That this peer was a problem not only for my daughter but for several other kids in the school. I also found out that this peers mother was helping in the classroom and was allowed to work with & discipline my daughter. I protested this and was able to get K switched to someone else.
K started complaining more & more about school. She was getting teased by her classmates for being in pullups. Something the other kids didn't know until after the rock/grass incidents which I must remember never happened.
The staff at school admitted this was happening but nothing could be done as K is too sensitive & children will be children. K especially complained about the smell that came from her teacher. She didn’t like to work close to her teacher and would come unglued if made to. When asked about the perfume the teacher was wearing or what exactly was going on we were again told it was none of our business.
K started to spend more & more time in the office or library. When questioned as to why the answer was because she got in trouble in class but I could never get any details. I would go to school to volunteer in the classroom and the principal would come down & yank me out even threatening to call the cops on me. She said I wasn’t allowed in the class do to confidentiality and that I couldn’t volunteer in the school. When I tried to volunteer in other areas of the school like in the library or for the PTA I was pulled out & threatened with jail.
I admit I quit trying to go for volunteer jobs or to be in the classroom. Even when I would go to pick K up for appointments the staff would call down to the room and warn the teacher I was coming so I couldn’t get a sneak peek at what was going on in the classroom. I tried to get the case manager to help me and I tried to get help from pluk but couldn’t get any from them.
One gal who worked in the school as an aide (especially to K’s teacher) quit her job. She looked me up & gave me a real ear full. Turns out that the reason there were so many adults in K’s class was to help the teacher and the reason K was sent out of class so much was because she was a handful in class. She didn’t cooperate, didn’t sit still, and was so paranoid she would attack certain peers especially the ones who attacked her on the playground. (ex. the peer that put rocks & grass in her pullup).
The teacher was undergoing chemo therapy for cancer, that is why she had a funny smell and needed the extra adult help at school to manage & teach her class. That is why certain parents were allowed to work with & discipline the children in the class. It boggles my mind that someone so sick was in charge of teaching a classroom full of kids. No wonder K didn’t want to be close to her as K has always been sensitive to smells & odors. No wonder the teacher couldn’t report what was going on in the classroom with K and no wonder I wasn’t allowed in. Cause I would have blown the whistle on the whole set up. She was allowed to continue teaching so that she could keep her health insurance.
The head of the title one program contacted me regarding K. Turns out that K was being a little monster in title one. She was so bad that none of the other kids in title one wanted to be with K. They were afraid of her and that fear got more intense after she threw a chair. I asked the Title One person why I was never notified about the negatives going on in Title One so that K’s meds could be adjusted or other help sought. She said that wasn’t her job but the teachers.
The teacher said the title one program never told her about it and the principal said it was none of my business do to confidentiality. K’s case manager said not to push it and to let it go as it was too late to do anything about it. I felt really bad about K being in that situation. I feel really bad that I have put her in such a negative environment.
Another mind boggler is the class room observations done to see if K. The report was that K only paid attention in her class about 2 to 5% of the time and spent the remaining 98 to 95% of the time goofing off and had learned enough to pass into 2nd grade. Everyone at the school thinks that I am weird cause I want K to spend only 2 to 5% of her time in the classroom goofing off and want her to spend the 98 to 95% working & learning. What the heck would happen to K if she did that? I can tell you that she would be out of her class really fast if she did and would be in a different class or school all together.
There is no help for her in social areas. No help for her because she falls through the cracks. The best I can do is keep taking notes, and letters from the doctors in to the school with hopes that one day they will listen. Keep her on the diet & meds that she needs and limit her time on the play ground as that is where she gets hurt the worst. And pray that some day the school will understand that there are many faces to autism and that not all autistic kids are in a vegetative state and institutionalized.
Something else we found out. None of the kids in that 1st grade class was truly ready for 2nd grade. Hmmmm.... I wonder why?
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It’s funny what you do to in the beginning times or just to get through the days.
Sometimes desperation can be the mother of invention. Here are just a few things that I remember doing just to make it through certain times. For ex. I had the stroller set up with a 5 foot chunk of laundry rope on it so that I could shove it forward towards the wall and yet be able to pull it back so that I could study & K could still get her movement that she needed. On my weak days I would put her in the sling and then try to scoot around in the wheel chair without losing her just for that same type of movement and so I could get things done.
One of the wackiest baby shower gifts I got was a sling. It just plain didn’t look safe. But how wonderful it was. I could carry K and move without my arms getting tired. I could even slip out of it and leave her in it without disturbing her on those lucky moments that when I stopped moving she kept on sleeping. Plus it was great for dh as it didn’t need to be adjusted to much to fit him and it worked a lot better on him for carrying K. I remember wearing that sling almost constantly her first year as I never knew when I would have to carry her. Sometimes dh would come home and find me asleep with the sling still on.
Next best item was her swing. I remember being terrified as she got bigger & heavier of what would we do when she didn’t fit in the swing anymore. I remember the day she no longer fit and crying for an hour to dh because I didn’t know what to do. Swinging made her happy in away that I couldn’t as her mom. I think part of this was the release of knowing something was wrong and feeling like it was my fault. Being practical he just took her to the park across the street from our house to swing. That started the if I want to do x, y, z then I had to go to the park for x amounts of minutes so she could swing first & handle whatever we did afterwards. Now that’s the kind of math I remember thinking they should teach in school. How to figure out how many minutes you had to do something in order to get a kid to cooperate.
I depended on a tape of the lion king sound track and how I mourned it’s wearing out from extended and repeated play back. Not the kind of mourning one does over the passing stage of a child but the desperate mourning of the loss of another survival tool. With the tape I could get her to sleep without carrying her or pushing her. With the tape on I could get a chance to shower in peace or eat something semi warm. I could get her into a vehicle to travel. Dh would get off the late night shift and drive around for hours listening to either the lion king or Pantera to get her to sleep just so I could get a little rest before school.
I remember walking to a little shop in the plaza just to get the banana bread muffins that K loved and would eat over anything else. I became a regular in her shop buying as many of them as my budget would allow per week. K loved them so much that I asked the gal to make it in a loaf form for K’s 1st birthday cake. She thought I was nuts but it really made K happy and I felt so good cause I was doing a healthy choice instead of cake.
I remember pushing healthy food at her and taking it personally when she threw fits after eating some of those choices. Like the cereal with Wheat germ sprinkled on top, the yogurt so she wouldn’t develop yeast infections on the antibiotics, Oatmeal, lots of whole healthy grains in many forms from breads, muffins, cereal etc. I remember getting multi grain cheerios because they were allowed with WIC and how healthy they would be for her. I never realized nor understood why she would have a rougher time when I used the cheerios for snacks or incentives to cooperate. Which now looking back I can see how bad the anger & temper tantrums and fighting was in connection to those items and how mean I must have been to give them to her and make her eat them.
I look back and see what I did and I can laugh at some of it as it seems pretty funny and other things aren’t so funny.
Like to get K to notice things around her I would crawl on my hands and knees so I would be at her level and bang pots and pans together. I would try to tap on things for different sounds where ever we were, I would take gravel and drop it into pans or buckets anything to get a noise and try to get her to copy me.
Then there was the baby blue dog leash that my best friend had given me so I could show my dog and follow one of my dreams. It was a normal leash for the most part but K loved it. She would drag it around with her. Once she started walking and then running away from us I knew it would come in handy. I had gotten the idea from some parents who I babysat for as a teen. They used dog leashes when they took there 2 year old twins for hikes. It kept the kids from going astray on the trails and yet allowed them to be curious and explore. I figured I could try it and see if it would work for K. Work wonders. Best invention I could have. I would hook it to the belt loop of her pants, to the belt if she was wearing, one or a fanny pack. K didn’t have to hold my hand which she hated and I didn’t have to worry about her running away or out into to traffic on busy streets.
Unfortunately this did get me in trouble with several people. They thought it was demeaning and humiliating. I would argue back that this was a safety issue and that I was trying to keep her safe as best I could. You saw kids on leashes all the time so what was wrong with mine. Well what was wrong is instead of a harness system or wrist system mine was fastened to the pants. Also it was so obvious a dog leash and it was solid not springy. I explained that I didn’t like the springy type as she would pull and then it would catch her off balance and she would fall. We found this out when we had tried them with her. With the solid non-springy type she could pull and the tension would be steady and she wouldn’t fall as much.
I proved my point when a very nice lady came to see why I was humiliating my child on our walks. We did it her way with no leash. I believe it was after the 20 or 25th time of chasing K back from the busy street and away from a ditch that she agreed that maybe a leash was a better idea. So we tried her wrist springy leash combo and as we walked K got hurt. The spring in the leash was just enough that when it caught her just right it would pull her off her balance and down she would go. Plus being it was on her wrist as we were talking at a nice stopping point on a bridge K un-strapped and re-strapped it to the bridge post. The lady who was giving me a lesson didn’t notice. When I pointed it out to her she couldn’t believe K had done that. So on the way back to my place I asked her to try my method. We even took a loop so we could go back to the bridge. Much to K’s disappointment she couldn’t undo my leash therefore she couldn’t attach it to the bridge a second time. Also she didn’t fall down as the tension was easier to adjust and keep the right amount and no chasing after her into the street or ditch. The lady didn’t say much on the way back. In fact the only thing she did say was that I needed to make sure I didn’t scar K for life and to chose my use of it wisely. I really didn’t think I had made much of an impression until 3 years later when I saw this woman again at a fair and she had her own child attached to a leash. She later confided in me that it was the perfect solution to her own runaway problem and thanked me for sharing with her.
The leash didn’t always work. In fact one of the funniest moments happened just before the leash left us. K and my mil had gone to the mall during a huge sidewalk sale. I had argued with mil not to take K because I knew that the smells and noise and crowds would be more than K could handle. Again I didn’t have a reason other than past experience so my mil ignored me. She let me know what a failure as a mom I was too while she was at it but she did agree to take the leash and use it. I gave K the advice of where to go should she get separated from my mil who was safe etc. I called and checked to see who was working security and gave them the heads up that K was coming with my mil. I even called some of the places in the mall and asked my friends there to keep their eyes and ears open for trouble. Everyone agreed to help out should the worse happen. Well, I didn’t hear from anyone for a few hours so I figured maybe I had over reacted. Then the calls came. First it was my girl friend from Cinnabon telling me how K had escaped at least 4 times before the leash was applied. Then came the call from another friend who verified that mil & K had made it to the mall and that K was having problems with the crowds and changes etc. She then told me a very funny story that was later confirmed by a security guard. K and mil were shopping at the end of the mall that had many tables and racks on wheels. K was seriously getting bored and mil was telling her to be patient. K threw a temper tantrum and mil got after her. Well instead of K sulking and settling down she started pushing the clothes off the table. When mil got distracted by trying to pick up the clothes k had pushed off she let go of the leash. She didn’t drop it but she let go enough not to keep the tension tight and K got it unfastened. She then fastened the leash to the bar just below the length of clothing but above the wheels. As my mil walked she felt the tension and assumed that she had won her battle with K. Unfortunately what mil hadn’t realized is that she wasn’t getting K to move with her but an entire rack of robes and lingerie. K had crawled under the table and was laughing out loud and so hard that it attracted the attention of several people who then noticed that mil was shop lifting an entire rack of clothing by pulling it down the mall and hadn’t even noticed. Alas I had to admit it must have been pretty embarrassing for my mil and that it was time to put the leash away for good. And when the time came for it to go away I was filled with a sense of sadness and dread. How to keep K safe when she hated to hold hands. It haunted me in my sleep but luckily we have come up with some creative ways using coat sleeves, a shoe lace, etc. and they have worked.
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I remember celebrating the little mysterious moments in her life and then feeling the dread of OMG she can do this now what do I do. Those moments of amazement and wonder that are so unique and special no matter how dangerous or inconvenient at the time like being able to unlock the dead bolt to our front and back doors, running the VCR and TV so she could watch her beloved pooh movie, being able to operate the toaster (awe the stench of the smell of a plastic lid being toasted by a very hungry 28 month old), the eggs all over the kitchen floor because she could “crack” them, clothing strung in all directions and my little streaker running down the street towards the ditch so she could be with the ducks or out to the busy street. The moments of her being a dog (not that this one has gone away yet cause as her teachers can attest it hasn‘t) when I thought it was normal and showed how smart and imaginative she was.
I had pulled a double shift at the pizza place here in town and had only gotten an hour and 1/2 of sleep when my mil dropped K off with me. I remember her just sitting playing with her milk lid tops and thinking it’s ok I can close my eyes for a minute. It was an eerie silence that woke me about an hour later. That dead silence that you know something is horrible wrong. I felt a soft breeze and that is what caused me to set bolt upright. The back door was wide open and K was gone.
I didn’t stop to think I just ran out the door and started calling for her. She had gotten tired of her tops or maybe she heard the ducks I don’t know nor figured out what it was that caused her to unlock the door. When I finally caught her she was down by the big irrigation ditch watching the ducks swim in the water. I was so angry at her for leaving the house and so relieved that she hadn’t drowned that I just picked her up and cried hard all the way home. When we got back to the house I beat myself up for not making sure the dead bolt was locked and asked K about what she wanted to watch on tv. She said ooh. so I told her we would as soon as I peed. Well I went to the bathroom and came back down the hall just in time to watch her put the movie into the VCR and turn on the tv. I was floored here this small child was doing something that I had never seen her do nor had I thought it had registered with her when I did it. Obviously it had or she wouldn’t have been able to do it. That made me wonder about the locks.
A few days later I would get my answer. My mother came to visit and K let her in to the house. I asked my mom if she had used the key and she said no she hadn’t. I was bothered about it and relocked the door. Then my gram and aunt showed up and to all of our amazement she unlocked the door letting them in too. It was then that I knew I had a problem with no easy solution in sight. Amazingly enough it was a simple solution. A friend had gotten one of those noisy motion censored items and I borrowed it. K couldn’t figure out how it busted her and I could tell when she was headed for the door. Best low tech gadget I could have asked for to keep her safe.
Her escape at the local doctor complex where she tried to find me brought home the seriousness of her abilities for figuring out how to handle obstacles like doors, locks, elevators, etc.. For one thing the whole time she was never afraid just angry because I was hiding on her. This was one of those after the horror and DFS and the police left I could see the intelligence, wisdom, and clear thinking she had. See she climbed out of her car seat, past her great grandma, and got out of the car. Her great grandma had a bad injury (broken bones & Parkinson's) and couldn’t get out of the car unaided to go after her all she could do was honk the horn which sped up the great aunt to hurry back to the car once she heard it. (The great aunt had left the car to use a bathroom) K then walked to the far side of the parking lot to a parking garage and took the elevator to the main level and then proceeded to the hospital and got on another elevator. Here with the crowd of people she got lost and got on the wrong floor.
Why did this happen? Well I had left her with her great aunt & grandma in the car seat asleep while I went to the doctors appointment at the hospital for & with her brother. Great aunt had to pee so she left for a minute to find a restroom, take care of business and get back. When great aunt heard the horn honking she knew something was wrong and then when she couldn’t find her she got me. We went to the car to see if we could find her. While great aunt tried to spot her in the lot or on the street.
I went to look for her but the only way I could do it was to think like K. That was easy in one aspect. I knew she knew that I had an appointment with her brother and that she had been with me to that part of the hospital in the past. I also knew that I had told her when I was done we would go get something from the cafeteria which is located on the same floor as where the appointment was. The only reason that plan had changed was on the way over she had fallen asleep. I figured she would do what we always would do for the appointments. So I did and for the most part I was correct with that assumption.
What boggled my mind is that no one who saw her from the coffee bar workers, security guard, the information desk lady, nor hospital volunteers bothered to stop the small child walking through a busy section of clinic/hospital by herself. In fact a security guard didn’t get concerned until she showed up in an ICU section and then K went blank and couldn’t speak and that‘s what scared him. Luckily for me, once I hit the information desk and heard that she had passed by unchallenged I was able to call a friend of mine who worked in the hospital and she was able to contact security and then get back to me so we could meet by the cafeteria. It was amazing how far K had gotten on her own. She even said she got off at the wrong spot cause she couldn’t see the floor because of all the people in front of her so she wasn’t sure if she was on the right floor or not. She couldn’t reach the buttons on the elevator so she was sorta stuck with what ever floor opened when the crowd got off.
I was lucky that my friend worked for the hospital and would vouch with me. Plus I was lucky to have photo id for myself and to have pictures of K in my wallet and a yellow dino child safety ID as the security guard didn’t want to let me take K. K had also had a seizure that’s why she went blank and was a little groggy and struggled to answer questions. Then the guard wasn’t sure if she was being honest since she wouldn’t make eye contact, wouldn’t stop rocking from side to side during the wait time and while he was checking my ids. He reported it to DFS but all they did was tell me not to leave my child with her great grandmother in a vehicle. I was very very lucky in this situation.
After this experience I started to question K when we went places. And more often than not If we went to a place she had been in before she could find her way around. Especially if given enough cues. For Example, she could find where I worked at in the mall. Because of the smell of perm solution, butter popcorn form the theater and the rides out front. If we came in from another directions at the mall it would take her longer but she would get us there it just took more steps.
Same thing in a local grocery store. I asked her where the cold cereal was and sure enough she took me on the usual shopping route through that store and stopped in front of her cereal. I was amazed by this. Once she got to where she could see out of a car window she could tell where I was headed and if I varied the route she knew it. And would often throw a fit if it wasn't the way she thought we should be going. (To this day she does this)
The challenge here was when we were going for the painful lab tests etc. It was harder to distract her and she could get herself in quite a tizzy by the time we arrived and that made it harder to get her to go inside willingly. I had people stop & stare so often that her case manager told me to give them her name & number as she would handle the butt-in-skies as she called them & hoped it would cut down on the threats they would make to call DFS on us for abusing K or trying to kidnap her.
Mrs. Henrichs
2nd Grade
Well now we start another year at school. There is a slight hope that things might go better this year. We requested a teacher who wouldn’t be too soft nor too hard. We also requested that the teacher go over K’s file so she could be prepared for K to be in her class.
On the day before school started we took K to meet her new teacher and find her classroom. K was very afraid that she would have the same teacher as last year so she hid all the way down the hall. She was surprised to see a new room and teacher. The teacher was very warm and welcoming to K. The teacher seemed to be just right. Hard to describe but she didn’t seem to be a push over and was eager to learn more about K. She had read the file and wanted to learn more about the Celiac Sprue disorder. She took the hand outs that I had ready for her willingly but seemed to be a little over whelmed with them. The handouts were quite simple at least to me. Basically a list of ingredients that K couldn’t have, a list of items that usually were no no’s like clay, glue, envelope seals, soap, etc. and a letter requesting her help in keeping K safe. We also discussed snacks and parties or special treats.
A few days later we had our first test. One of K’s peers in school had a birthday and the mom brought treats. There was no real time for her teacher to have gotten familiar with the class to warn me so she had to do some fast thinking and instead of a gluten-casein containing cupcake she gave K a pencil. K was thrilled to get something and not be left out and didn’t care that she didn’t get a cupcake. I was thrilled that the teacher handled the situation appropriately and didn’t cave or panic. I asked her is she would be willing to allow me to send a letter to the parents of K’s classmates explaining the diet and requesting them to notify me if they had questions, concerns, or a birthday coming up so that K would be prepared with what she could have. (We had requested permission to have some special cupcakes that K could have stored in the school freezer for such a situation but the principal refused to allow it.)
I printed up 17 letters and gave them to the teacher. However, none of the students received the letters to take home. The teacher asked the principal for permission or the principal saw the letters or something happened anyways and the letters weren’t sent home. Why???
Well the principal said that the letters can’t be sent out due to confidentiality would be broken and the letters are against the confidentiality rules at the school. I also spoke with the teacher to see if I could have a lady come in and do a presentation on both Autism and Celiac Sprue so that k’s classmates would have a better understanding and be more willing to accept K as a member of the class. Again this was deemed wonderful by the teacher but 86’d by the principal. The reason again is it violates the school confidentiality rules.
K was doing ok in school. She adored her down to business teacher and likes being in a small class this year. She only hates having other kids in her class. The teacher very willingly and for the first time in over a year accurately filled out the behavioral forms that K’s doctor needed in order to judge K’s medication dosage. The teacher also provided loads of information on K’s day and we were able to adjust the dosages to fit the day. Things looked like we had died and gone to heaven as compared to last year. K was happy, We were getting information that was needed, the teacher was happy and the doctors were happy. Oh how short those two weeks of bliss were.
At the open house that the school had I went to visit with the teacher. A major change in her attitude had happened since the first day of school and it was noticed at this open house. I asked her what her goals and challenges she would be having K face academically and was told not to worry about it as K would pass 2nd grade with flying colors. It was in the bag. I asked her what she meant by that and she said that K was guaranteed to pass academically so I didn’t need to worry about it and I didn‘t need to provide K with any assistance except to do a book a night.
I was encouraged to just write in titles for the book a night too since K hates it and has started fighting it. (She didn’t always hate to read it was after she got caught reading that she changed to hating it) The teachers big concern and what she was going to work on was getting K a friend.
When I told her I wanted K to be a successful adult and able to support herself she laughed and said I was shooting for the moon and would be very disappointed. That I should just accept that K has limitations and should focus on getting her friends instead of preparing her for a college.
The principal came in and that ended our conversation. Later on at the open house I saw the teacher again. She wouldn’t make eye contact and seemed very sad and refused to speak to me or be introduced to K’s dad. The next day she was put on bus duty and not allowed to escort her class out of the school and couldn‘t talk to me about K‘s days as she was too busy doing bus duty.
The teacher also started the push to get K a friend. She chose to sit K near a little girl who seemed tolerant. To this little girls dismay she got assigned to be K’s helper. It was her job to partner with K in all the classroom activities and to play with K on the playground. However, she refused to do the playground part of her new classroom job.
The little girl also made it very clear at Wal*Mart a few weeks later what she thought of K and how unfair she thought the teacher was being. Her mom also agreed with her 100%. I felt bad and poor K didn’t understand why the girl was saying that she hated her and was acting up. K’s never been good with friends and has never really had any. She doesn’t understand the social skills to make and keep friends plus she is very active and likes to play tag above all the other games. (This is the one game that a FSS got K to do with some success and now it’s all she will do for the most part in a social setting). I asked the teacher about the little girls comments. Again do to confidentiality I didn’t know the child's name and teacher switched to another peer.
Shortly after this meeting the teacher informed us that she could no longer fill out the forms, do the communications notebook, or tell us about K’s day. She would only say it was a good day. We could tell it wasn’t a good day as K would have bruises, scratches, muddy or grass stained clothes, would be crying and screaming that she hated school and never wanted to go back.
I went to an advocacy agency to see if they could assist with the sudden turn around in the teacher and the hostility we were receiving from the school. They went to work on writing letters and setting up a meeting. I asked them to help me get to the bottom of the buttered popcorn incident etc.
K’s class had won a special treat from the principal. the principal gave each kid in K’s class a bag of buttered popcorn. K willingly took the bag of popcorn from the principal and happily munched on it. When we picked her up from school she was happily munching away on the popcorn. When asked who gave it to her she said the principal. When we asked the teacher why she didn’t tell us so we could provide an appropriate reward she claimed lack of time to notify us. She also claimed it was a surprise and wasn’t buttered. The bag was greasy and you could smell the butter. The principal couldn’t discuss the incident as she was conveniently in a meeting. so we turned to the advocacy program for help.
At the school meeting the advocacy person couldn’t make it but the advocate did talk to the school people and had the game plan worked out and unfortunately my signature was applied to the recommendations since I had signed the letter requesting a review of K‘s progress in school.
The case manager that K had changed a week before the meeting to a very nice gal who was clueless as to what she should or shouldn’t do at the meeting. And I didn’t know what to do either especially when my signature appeared at the bottom of a letter that was written by the advocacy group but I didn‘t agree with nor approve the attached papers.
The principal ran the meeting. The school people who attended kept there heads down and mouths shut. the principal took the attached papers that I was unaware of and got tons of very valuable items removed from teh 504. I was left with nothing for K’s protection.
Because I had signed the letter requesting the meeting and the advocacy person had attached papers that her & the principal agreed on to the letter it looked like I approved. I said that I didn’t approve of the papers attached nor did I know about the attached papers but I had no one to back me or support me.
The advocacy person wasn’t there to confirm or deny my knowledge of the papers, the new case manager had no clue about what was being done so she couldn’t help me to protest the papers, and the principal kept saying that I had to know or they wouldn’t be attached to my letter. To this day I don’t know if they were even truly attached to the letter. All I know is that the principal won by having many items taken off the 504.
I asked again to appeal and after the meeting went to the advocate to get the appeal started. Only to be told that I had nothing to appeal as what was done was done. My aunt felt it was vindictiveness that the forms were attached without my knowledge.
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A very interesting parent teacher conference was held. I was told it would be just the teacher, myself with K’s case manager, and my aunt. Instead we got several more school district people to attend. The school psych, school behavioral specialist, school counselor, and principal all showed up.
At the beginning before the others joined us. We found out that K was having issues in class. She copies the other peers to a T, she tattles way to much and bugs the staff for help with problems with peers, she has missed all her afternoon recesses and that she deliberately does repetitive motions to bother her peers.
We found out some very interesting information. One that K is paying attention better in school. Last year she was on task about 20 to 30% this year it’s closer to 60 to 70%. I was thrilled to hear that of course. I want K to stay focused in class and learn. They said that K has only had to go to the office 2 times in order to finish her work and has missed every single afternoon recess because of not finishing her work since school began.
There is no problem with her missing afternoon recess nor did they feel that it was an excessive amount of recess to be missed. Every single afternoon recess since September seems a little much to me. They didn’t understand why K would rather not finish her work and miss recess than to do as told and get to go to recess. They also mentioned that since the playground incident where K’s ribs got hurt she has gotten worse about deliberately not doing her work and therefore missing recess.
I mentioned that her not feeling safe during recess has caused her to use lack of finishing assignments as a way to avoid recess. I told them that K has told us, her doctors, and anyone who would listen that as long as she doesn’t do her work she can stay inside. When questioned why she chooses to miss recess. She said the kids pick on her and she’s always in trouble on the playground and that the only way to stay out of trouble and not get hurt (either physically or emotionally) is to avoid recess the only way she can do that is to not finish her work. I pointed out that this concerned me.
The staff said that K cries wolf to much and is constantly tattling on the other children. That she often starts a fight and then won’t admit to her part so the staff has gone to disbelieving anything that K tells them. I said oh is that why she was ignored when her ribs got injured? they informed me that because she wasn’t dripping blood that they felt she hadn’t been hurt. Plus she was breaking the rules so getting hurt was part of the consequences in their opinion.
I was floored by this remark. I again explained that K doesn’t know what to do. She is told by staff to use her words not her fists and to come to them when there is a problem but is also told not to come to them when there is a problem. So K would rather avoid recess than to try to figure out when to go to staff for help and when not to go.
I was told that since she is almost 9 she should know how to handle the situations by now. I re-explained that since K doesn’t get the social aspects that she struggles with recess and I asked about her possibly being set up by her peers. The staff admitted that K is often set up by her peers to do things that will get her in trouble. The staff feels that K should know better and is willfully continuing to play tag, chase the kids, and play games with the other kids that she knows better than to play.
That if K isn’t doing these wrong activities, she does even worse things like running in circles, being an animal (if a dog she growls and tries to bite those around her or a horse and moves in circles), hopping on foot to foot, making loud noises, repeating noises in varying levels of sound, talking to an invisible person and has on one occasion has been seen head banging. All of these behaviors the staff feel are inappropriate and that K should stop doing them and should know better than to do any of these as they aren’t what normal people do.
However, one of the complaints is K copies the other kids to a T and she refuses to do her work. See the teacher has decided to help K make friends by assigning a peer to be K’s buddy for the day. K’s buddy is to help K out when she has questions or struggles with following routines. K is to copy her buddy. Well, the teacher described a very interesting problem with this routine.
One day a boy was assigned to be K’s buddy. He helped K stay on task and follow the day. K was really using the buddy program to the max. The only glitch was that the boy finished his classroom assignment before K. So he was allowed to clean out his desk. K happened to look up for a visual cue and saw that he was no longer working on the assignment. She asked him what he was doing.
He told her he was cleaning out his desk. K got flustered and upset. She took a minute and then put her work aside and started cleaning out her desk. The teacher came over and asked K why she wasn’t working. K said I have to clean out my desk now. The teacher said No you have to finish working. Then if there is time left over you can clean out your desk. K looked shocked. She said NO I have to clean my desk.
The teacher says why. She says because her buddy for the day is cleaning his desk. The teacher told her no it is work time and you will put your stuff away and get back to work now. K got really angry and in her face. K stopped and backed down. She put her stuff back in her desk and went back to work. The teacher saw K as cleaning out her desk to get out of doing her assignment.
The behavioral person saw K as manipulating to get out of her work. Everyone was concerned as to why K got mad over a little thing. They didn’t feel that it was appropriate for K to feel anything but remorse for doing the wrong thing.
I told them that I saw K as doing what she was instructed to do. I said you told her to do as her buddy does and she did. The anger probably came from the fact that K thought she had missed a transition or instruction to stop work and to clean and felt she was in trouble for following instructions given to her by her teacher to do as her buddy did for the day.
She was embarrassed for doing the wrong thing yet again in front of her classmates. See what the teacher didn’t know and the others is that at lunch time K came home in tears and told us how she is stupid. She told us that she didn’t understand why the teacher had gotten after her in front of everyone for following her buddy’s lead. K didn’t understand what was happening and didn’t understand why her teacher told her she was doing wrong when she was just following her buddy’s lead like the teacher has stressed for her to do.
The teacher also commented that K is hooked on doing her work in a certain way. Using a ruler as a number line or using a number line for Math. One color of pencil for writing and another for doing dot to dots. The teacher finds this to be rather frustrating as K gets very angry and shuts down when she can’t use the ruler, number line or is unable to find the right color pencil to do her work. She feels that K uses these crutches as excuses to get out of doing her work and that K is deliberately doing it.
I asked her if she remembered our conversation at the beginning of the year when she introduced the ruler as a number line. The teacher thought hard and admitted that she remembered me saying something against it.
I had told her to teach K to do her math how she expected her to do it at the end of the year. I explained that K would do her math however the teacher wanted and that later she would resist changing to a different way to do math. The teacher admitted that maybe that is why K is having an issue with giving up the ruler & number line.
the teacher also commented that K is super sensitive to odors, lighting, and noise and frequently complains about them in order to get out of doing her work.
Her other big complaint is how K resists change in certain things. She is ok with the change of a book, change of buddy, or change in what is covered in class ex. studying oceans and then going to farm animals or something else. But K can’t handle changes in the classroom structure of subject order ex reading or math before writing exercises, or changes in recess aides.
another comment that floored me was that the staff didn’t realize that K shouldn’t be talking to her dead grandmother and following her instructions nor did they realize that K talking to voices & following the voices instructions was serious and part of her Schizo-effective Disorder and why she takes the zyprexa.
I was able to ask if any of the people in the room where familiar with autism, schizo-effective disorder, & sensory integration issues. I was told that they weren’t familiar with those diagnosises at all. I didn’t know whether to be angry or very sad. They have had 2 years to learn and still refuse to get informed about what K has. The staff expect K to be normal and to not do the things that make her be K. All I know is I got her in the wrong place and I don’t know how to help her.
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