AUTISM AUTISTIC ANGEL KANE'S WORLD OUR LIFE There are so many things that can help Autism! : The Start

AUTISM AUTISTIC ANGEL KANE'S WORLD OUR LIFE There are so many things that can help Autism!
The Start

Hello, I am the mother of my bi-racial, adopted, autistic son, Kane. Wow, what a mouth full. Please keep reading and stay with me. I started this site for many reasons, with the main reason being; to let you and others know that Autism is NOT a “Death Sentence” as some often refer to it as.

There is HOPE. There is HELP.

Bullfrogs, Bugs and Butterflies

Now Open in Crete, Nebraska

Call to enroll your child today

402-826-FROG

www.bullfrogsbugsandbutterflies.com

Making a Difference One Life at a Time by Educating the Whole Child!

This was on our team t-shirts for the first ever Autism Walk; my daughter drew it for Kane!

UPDATE: The first Nebraska Walk Now for Autism Raised $85,300 dollars, had 737 registered walkers, 110 teams, and a total of

2000 attendees!

Welcome Newcomers to Kane's World and Kane's battle with autism. Please feel free to e-mail me at: autismkanesworld@zoomshare.com

As you can see the Puzzle Piece backround is Gone; I am currently~slowly trying to update for January of 2009!

I wanted something brighter, softer~ not so AUTISM!

To all of you regular users of Kane's World you are at the right site and I am sure you all understand~ The lighter and brighter side of Autsim~

A Wish, A Dream and a Child so light and bright is brilliant~

And that my friends is my son KANE!

I try to update our life and Kane's progress approximately every three to six months. (Click on Update for most recent progress) Please check back on Kane's progress and Kane's World. Thanks for visiting Kane's World and taking a few minutes of your time to live in our life. Be sure to open the pictures in a new box to read the comments of his weight and head size from birth; quite remarkable.

First, I do not like the word “Normal” we use the word “Typical or Average”. Who says “Most” children of the world are “Normal” and that Kane is “not the normal child”, to us Kane is “Normal”. Just because the majority is one way, does that make it the “Norm”? What really is “Normal”?

FROM THE START

BIRTH TO AGE 2

So…here is our story, our life, and Kane’s World, as we often refer to it as, or to our days. Kane first came to us in Foster Care, straight from NICU at 7 weeks old, weighing in at 2 grams short of 5 lbs, which was big, starting out at 3 lbs. 2 ½ oz. (Kane’s estimated gestation was 28-29 weeks.) Kane was very ill from the start, with numerous medical problems. Kane came home to us from NICU with 18 medications, we now have 4. (Cerebral Palsy, seizures, a blood disorder, hernia, blind, a brain bleed, low muscle tone, growth retardation, fetal alcohol, a hearing loss in the right ear and of course prematurely and many more), ((this is the short list)). From birth Kane would “play possum” when people would come over, with a State Ward adoption, we had our share of visitors. Over time Kane would not “play” with toys, he would just fidget them in his hands or fidget just his hands together, as though he was ripping something up. Toys or anything not attached to the floor would go flying across the room, from Kane throwing it. Kane would not look at people, but only for a short time. He was not an affectionate child, no hugs or kisses, now we do get hugs and kisses; we take all we can get, for they are short lived. Certain sounds would and still do drive Kane crazy, or cause Kane to have a “melt down” as we call them. Babies crying and certain laughs from adults are the worst for Kane. Kane never said mama until just recently, a little older than 2 years, that was heart wrenching and a high goal as a mom, of course. So when we adopted at 9 months, our eyes were wide open, we DID know what we were in for. We already had been living with the pain, tears, joys and love; we had already jumped on the roller coaster ride with both feet planted firm. (We had no idea what would come next, but we knew it would just all fall into place) ((Little did we know how much more pain, tears, joys and love would follow)) After all, Kane was predicted to be wheelchair bound, not walk, not talk…basically nothing. Kane proved us all wrong. To everyone’s amazement, love, prayers, and work, work, work on all of us, especially Kane. Kane now walks, runs, climbs (on anything he can climb on and on some things he should not). Kane sits, feeds himself, and “looks” like a sweet “typical” little boy. As time went on some problems lessened, some remained and some got worse. ADHD was next, Kane is never still, if Kane is still, Kane is sick and then we are still on the go, somewhat. Some speech but most of it was jargon or babble, humming, lip smacking, grabbing and hitting his ears, and head banging. Kane picks at things, (picks off the cork off of coasters, the felt from underneath the couch, his clothes). Kane's wall paper on one entire wall of his room, Kane has picked off into small, tiny pieces; I have replaced it numerous times only for Kane to re-pick it off. We have decided to paint the walls, (maybe magnetic paint, then he can take off and on magnets) How are we going to paint Kane's room... Who knows, we haven't figured that out yet. The slightest upset in routine makes things much worse. If Kane does not have the comfort of "his" room for even one day, he will have extreme behavior problems for the next three days or more, on average. We are on our fifth DVD player, in 2 years, from Kane opening and closing it, non-stop. The light switch goes on and off according to Kane. Kane does hold our hand now, but at times this is a struggle, yet. There are many delays in many aspects with many behavior issues, kicking, hitting, head banging on furniture, concrete, self and others, while screaming for 6-8 hours straight. We tried day care for 2 ½ hours, 2 days a week, Kane would hit him self and the other kids and scream, most of the 2 ½ hours. This became too difficult for the provider and for Kane, that we did not continue with it, he needed to be with me and in his home environment, his comfort zone. With desperation, we heard of “Baby Signs” and started signing with Kane at 15 months, using “Baby Signs” and ASL. (((See Sign Language Links))) Kane instantly grasped this “hand” talk, his frustration and anger lowered greatly, with the fact of us just being able to understand when he wanted a simple thing; milk. A little over a year later, Kane signs 60-70 signs and is verbalizing 1-2 words together at times. YEAH!! We still have to give Kane verbal prompts and cues; other times Kane speaks and signs by himself. We also started the PEC’s (Picture Exchange Communication System), this has helped Kane learn and visualize. (((See Communication Devices Links))) The interesting part of this; is that when Kane signs he looks to us for reassurance that he did a “good job” or that he did the signs right and waits for us to sign back to him. When Kane does not know a sign, he makes one up; Kane relies greatly on his hands and this wonderful language. Kane likes to do crafts, cooking, music and things that are “hands on”. Music has been a calming tool for Kane. We play Christmas music all year round and classical music is a change of pace for us, depending on Kane’s day, Kane’s World and Kane’s World is what we live in now. However, we still noticed that some other things were still not quite right and not quite up to speed as a “typical” 2 year old. We often threw the “Autism” word around and wondered, worried, questioned, prayed and continued with Doctor after Doctor for answers, other answers, NOT AUTISM!

Nevertheless, the numerous Doctors had the same concerns and the same answer; we did not get the answer we wanted, all saying the same thing, the dreaded label----------“Autistic”

IT IS AUTISM:

AROUND AGE 2

Now, we finally had an official “Name”, diagnosis, we started the work. We thought it was work from the beginning, we truly did not know what was about to come next. I started researching, reading and making phone calls, after numerous attempts the majority response I continued to get was… “You need an ABA program”. “I need what”? “You need ABA”. (Applied Behavior Analysis). “What is that”? Too much surprise, I could never get a real true answer or detailed step-by-step answer to this approach, process or intervention, no one could give me answers. But now, I had somewhere to begin. (I was told change Kane’s diet, add this, and remove this. Try brushing the child with a horse brush for sensory issues, try vitamins, try medications and the list would keep going, we would try and try again. Some things did help, some did not.) ((Medications did help with some of the aggression and self-injurious behaviors)).And many would say “You are so lucky, you have a diagnosis so young”. (2 years old) “Lucky”? I wanted to scream at them and yell right in their face; “Lucky”, would not have to deal with this at all. After finally getting in touch with an understanding mother, a Psychologist, Psychiatrist, Behavioralist, Neurologist, an amazing Speech Therapist and our Pediatrician, we were told, and now knew that ABA was the best known course of action for children with Autism at an early age. I then realized I was “Lucky”, in a strange sense of that word. Having Kane diagnosed at age two, meant we had 4 years until school to do our ABA program. We now just needed someone to teach us, show us, and train us how to do it. We needed what is called a consultant. (A Masters Level, Board Certified Applied Behavior Analysis Consultant) ((This is the professional Title, you want, when you hire one)) (((See ABA Consultants Links))) The next problem came, finding out that in Nebraska, (We live in a rural, very small town ((1500 people)) there were/are only 2 “Professional ABA Consultants” in the entire state, and the waiting list was forever. These 2 Consultants were over an hour away from me, one-way. I then started emailing to out-of-state consultants. With much response… we would love to help you, but we are so busy as well and the cost to you for an out-of-state Consultant would break you. “What insurance does not pay this”? Another problem… “No, most insurance companies DO NOT PAY ABA, and if they do, if…they only pay a small portion”. “The state; Medicaid (which we had as a secondary insurance, through the adoption) WOULD NOT PAY, even one penny, either”!!! “IT IS NOT MEDICALLY NECESSARY”!! However, everything I read and was being told, said ABA was the number one course of action that Kane needed and we only have a little more than 3 years now, to get Kane HELP, time is ticking!!! The expense for ABA for the next four years, before Kindergarten would be minimal compared to an institution and the cost to care for an autistic through out their future, without an ABA program. I was told ABA could cost from $35,000 to $80,000 a year depending on in or out of state consultants, and the level of impairments that the child has, with on average the cost per year to institutionalize is $900,000.00. **I believe Insurances need/should and some day will need pay at least the training with the consultants.** Families are having to hire 3-5 team members after the training, just to keep the ABA program running effectively, this expense is added on to the fee shown above.** ((Crazy, but true.))

We were starting to like the word “Lucky” now. We found a wonderful ABA consultant in Kansas, that had a training program for parents and team members and we jumped in. We hired team members, some worked, some did not, and we would start the process over. But now… we do our ABA, Kane is doing remarkable, we are on medications for the aggression, head banging and cognitive abilities. Kane can say some nursery rhymes with assistance, count to 3, knows his primary colors, can say ABC with no assistance and a major safety issue, Kane now knows stop and go. Kane is starting to go potty on the potty chair. Yeah! Kane is matching objects, and speech is slowly improving. This is a start and we are hopeful, we know that things will never be the same for Kane as it is for the other “typical” children of the world. Each day is different, never the same, some are exhausting, some are painful and sad; with solid tears, some are funny and silly, (to Kane some day’s, Kane’s World is hysterical) but all the day’s are cherished and loved. Because…we now know it will be, “just ok”.

WE LIVE IN KANE'S WORLD NOW

We live by Kane’s routine, Kane’s schedule and Kane’s environment. We start our day with the same thing, same way, and same consistency. We continue our day and our bedtime with the same consistency. I stay home with Kane 24/7, other than appointments for Kane, we live our life according to Kane’s World. We hired a baby-sitter once in 2 ½ years, (she was an ABA team member, so Kane would/was familiar with her) we went out to eat for my daughters 17th birthday and were gone for 1 hour and 45 minutes. Kane cried for the last 45 minutes because his bedtime routine was not done the exact same way that it is done every day, every night. (Structure, structure, structure) Kane has milk in his colored cups, his juice in the clear, straw cups and toast with every meal (cut in a circle and sprinkles on the top), snacks go in a cup, not a bowl. When you put a coat on Kane, it must be zipped; Barney is on at 9:30 am every day and weekends (on a tape). The music is played 24/7 through out the house, the same song. (Thank goodness for repeat on the CD player, ha-ha) Kane’s favorite blanket goes next to his skin, Winnie The Pooh blanket follows, the “soft” blanket goes on the top, next to his cheeks. The fish bowl is in the bed on his right side by his head, the other fish bowl is at the foot of the bed, the batteries are fresh and always on hand. The garbage is pulled out to the garage by Kane and only Kane, with no help, of course. The bean bag is ready in the middle of the floor for quite time, before nap. The Baby Bumblebee vocabulary video is played each day, at quite time. (((See Vocabulary Links))) Story-time is Wednesday, (this is my best day of the week, I enjoy going to this with the other mom’s, and I love to see Kane interact with the other kids, I am so proud on Wednesday’s, some are better than others, some days he can’t do it at all, but I still look so forward to the next Wednesday). Doctors and appointments are Mondays, (2 ½ hours round trip on the average) the earphones go along, the juice cup goes on Kane’s left side in the car seat, the “cup” of snacks go in between his legs, on top of his favorite blanket. Monday’s are our worst days; the drive is long for Kane and he struggles with the transitions from home, car, Doctor’s office, car and home again. Kane’s pocket calendar (daily planner with the plastic covers), spiral notebooks (3 x 5) go everywhere, Kane goes. I keep an extra supply on hand in storage, you never know when we need one; I have an extra one in my purse too. We use the vacuum only on “good or great days”, or the vacuuming does not get done, the fuzz balls wait, ha-ha. Medications 3 times a day, meals are scheduled and not more than 5-6 minutes later then the scheduled time. We decorate for holidays each day for the entire month, adding a little bit to the environment, as Kane tolerates. We tried on our Halloween costume, everyday, twice a day for two weeks before trick or treating. We made it to the volleyball games this year to watch my daughter cheerlead, Kane did not make the entire games, my husband or I would leave early with Kane, the other one stays for the rest of the game to support my daughter and her activities as well. The buzzers, the crowd, and the loud noises cause Kane to have his “melt downs”. This is great news, last year we only made about 15 to 20 minutes, this year we made about 45 minutes. YEAH! The walls have Kane’s schedule board and PEC’s system mounted. We have no “pretties” sitting around were Kane can throw them or hurt himself. The house is Kane proofed, and Kane proofed each night after Kane goes to bed, for in the morning our day begins with the same thing, same way, and same consistency. The tick’s go on and on.

Kane is a bright-smart little boy, some things he can do will amaze an adult. Kane has a smile so bright, a belly laugh that make the whole world seem at peace, with no harm. He is funny and silly; Kane likes to show off when he does his “silly face”. Kane loves to play out side; he loves swimming, books, crafts, cooking, animals, trucks, tractors, colors, painting and play-dough. His hair is the curliest hair you have ever seen and his cheeks are round like a chipmunk. When he is being silly, his eyebrow will curl up and he gets a twinkle in his eye, you better watch out. He likes playing chase, Barney, the Teletubbies and Sesame Street. He walks like a butterfly and we all laugh and so does Kane, now. Kane can dance, and can get the entire house dancing; he loves music, just with his smile and his moves of course. Kane kisses and hugs us all each night before bed and signs and say’s “I---ub—ew”! (With prompts and cues.) We kiss and hug Kane back and say, “I love you, too.” See he is “Normal”, Right? This is Kane’s World, Kane’s life and now ours. We take each day, day by day, hour by hour and some days; even minute by minute. We have learned to love this special world, for the special way that it is, because if we didn’t live in Kane’s World, our world would be very sad and lonely. For Kane’s World is Special, Just as he is, Special!! We thank God, for all the “Lucky Stars”, and remember we are “LUCKY”!

KANE IS 3 YEARS OLD:

Kane has completed 6 months of Applied Behavior Analysis. It is a remarkable intervention. We started Kane’s ABA program in September of 2004; Kane was 2 years 6 months old. I will try to express to you what ABA has done for Kane in the last 6 months. It is extremely difficult to put into words what this intervention has done, for Kane. In order for a person to truly understand the enormous changes in this child, a person would have to live it and love it every day. Kane's Vineland Adaptive Behavior Scale show the remarkable results: September 2004 his lowest score was in Play and Leisure Skills; he was at a 5 month old level, 6 months latter with ABA, he is at a 17 month old level, a 1 year and 10 month gain in 6 months. WOW, but it gets better the highest; he was at in September 2004 was Gross Motor Skills at a 2 year old level with a gain of 13 months, now at 2 years 9months, Community Daily living Skills were also at 2 years with a gain of 6 months, now at 2 years 6 months. But, it gets even better yes it's hard to believe; his highest increase in actual months was in Receptive Language he was at a 9 month old level and had a gain of 26 months, now he is at 2 years 11 months. He also went up in every aspect, there are 16. In Written Language he was at 1 year 6 months and had no change but... this is acceptable for his age. Remember Kane was 2 years 6 months old in September of 2004 when we first tested and now at 3 years old. Wow what scores, YEA KANE!! These scores I presented in my legislative speech also. (((See Leg. Bill 101))) Kane went from a little boy that had a world only as big as our house, no…our living room. Kane’s world has expanded in only 6 months to: weekly story-time with other children, appropriately sits with the group and listens to the story, participates in activities but most importantly appropriately interacts with other children without hitting. Kane is attending one day a week the local special needs public preschool, with my ABA team member and is interacting appropriately with the preschool children. Kane kissed me good bye and said bye mom (not mama) for the first time after 8 visits and never cried, for the first time in the entire hour. He recently quit throwing his snack and hitting. He also started attending a “typical” Preschool, I do attend this with him, 2 days a week for 3 hours, (with hopes to gradually fade out), this has been a struggle because it is hitting nap time, 2 days a week, (don't know if it is a bigger struggle for Kane or mom, you become so regimented that you are immune how routine things are, it is just as hard for me to adapt too, but he loves going and is hanging around the long blonde haired girls, haha (just like his mama's hair). He still struggles with his attention and cognitive abilities; the sitting is very difficult for Kane.We have started on Strattera for this; this medication has done a world of difference you can actually see him seeing things he has never noticed before, because his little brain was going at the speed of light, now it's trying to take in the world at a “typical” speed. We have also started Kane on a vitamin called Spectrum Complete, it is amazing stuff, the hyperactivity is almost 50% or more, better. (((See Biomedical Interventions Power Point for a more indepth view))) Believe me I was very skeptical with the whole vitamin thing, but desperation to give him peace, you will try anything; (remember we even tried the horse/shoe shine brushing way back). As a parent you just want it to be fixed with any sort of miracle. Kane is able to attend public high school basketball games and has made an entire game without aggression, self-stimulation or self-injurious behaviors. Kane approaches children and adults and verbally says “Hi” and waves and has outstanding eye contact. Kane now “Plays” with numerous toys and has the concept of “pretend play” he also helps clean up. Kane now laughs with us and other adults. The humming and lip smacking are completely gone. The ADHD, throwing, self-injurious behaviors, self stimulation and “melt downs” are better, we now can redirect Kane out of them with-in minutes compared to constantly all day, and they are now controlled. The screaming is almost entirely gone, except for the fact that he is 3 years old, after all most “typical” 3 year olds have their days. Kane knows all of his colors (Kane learns everything with color codes), 7 of his ABC’s, 8 nursery rhymes, 75 objects, over 12 body parts and counts to 3. Kane can do a 13 to 16 piece block design puzzle card, hummmm interesting at the least. Kane is outstanding in music, it is out there what he can do with music, he will blow most adults away with what he can do with music, it’s almost scary. Kane knows safety issues’; he knows stop, go, wait, yes and no. Kane can dress himself with assistance and undress himself entirely, washes his hands and face, brushes his teeth and can eat in a public restaurant, with out “melt downs”. Kane is going potty on the potty chair and the “big” potty, standing up. Kane still signs about 100 signs; he uses the signs when he is not comfortable in a certain environment or with certain people. He is still using the Picture Exchange Communication System or also known as the PEC’s system. Kane’s speech has improved to 2-3 word phrases, sometimes even 5, you stop and look at him, to make sure you heard his little, sweet voice right. He verbalizes familiar people by first name. Kane now holds our hand, but most important to me; he gives hugs and kisses and say’s “Mama, I wb ew”. We still have our days and our moments and some ticks, (spiral note books and pencils still remain "the thing", shoes are the new obsession, we have white, blue, and even green, we have brown and yellow high tops; to Kane they are "boots" haha and his favorite), we walk in the garage around the car 2,579 times a day while Kane pulls his wagon and does stop and go, this is a family activity, we don't need to exercise; we walk, and walk and walk, (I wore a mile tracker once and just being home with Kane I walked 3 miles a day, hummmmm) we also do the "elephant" non stop, I wonder what people think when they drive by and the window shades are open and see my husband and I walking like elephants, Kane is so short they probably can't even see him doing it to. (They probably think we have lost our minds, haha).The house is “Autismvill”, the rooms, the furniture is arranged for Kane, the schedule, the walls, and our lives, but for now we are on a stable path.We have 3 more years before school and we are very hopeful for Kane’s future. Don’t get me wrong I know ABA is not always a cure all, but we are not looking for perfection, for if he was perfect he would not be “Baby Kane”. The other news, good and bad, our awesome ABA team member will be leaving us in August, she is amazing, and we will miss her greatly and always remember what she has done for us and Kane, from the start of ABA.

But, on the good side she is going to college and will be studying special needs, she had no plans of this until, Kane. (See I told you all; he was an angel sent from above to do his work in others, and make a difference) When she completes her education she is going to benefit so many children, we need more talented people like her in the world. We are well, loved, and blessed for we are lucky, we get to view the world in ways no one else sees it. It is a world different than the norm, but it is a world we would never be able to live with out. We see things differently, we love differently, we live differently, and we learn differently, we are so blessed to be touch by this little angel from above.

2005 SUMMER UPDATE

A summer of past dreams, lost dreams and new dreams.

Hello, Welcome to our summer of 2005. This has been a summer filled with emotions of bitter sweet. Our summer started with great joy, Kane attended Preschool Summer Camp at the same Preschool from last year, but instead of 2, 3 hour days, he went 5 days for 4 hours for 2 weeks in a row, and then attended Bible School for one week. He did outstanding, no help from mom, no Para, with 20 some kids, it was absolutely unbelievable. During the Bible School Program, he sang songs and did the actions too. He didn’t complete the program, but that didn’t matter to us, we shed lots of tears, of pride and joy. In a month’s time from the end of the year program in May; to the Bible School Program in June, there was an amazing difference. Kane still remains hyper with a short attention span, but he continued to show progress and lasted much longer. When night-time came he would be exhausted from camp and would crash quickly. He has tons of friends, the girls love him; dote on him, pat and love him and most of all; and all the kids help him. As our summer continued, next would be swimming lessons, for 2 weeks in July. Kane got extremely ill with a horrible cold, with his medical history, he has a hard time fighting illness of any kind. Kane’s behavior started to decline back into extreme aggression and he continued to regress. The throwing, kicking, hitting, screaming, head banging and all the self stimulation and ticks slowly started to return and suddenly return with a vengeance. We kept telling ourselves it was because he was so sick, school was over, he was bored, and we had cut down on ABA for the summer. We just believed these reasons were why. In the end, we cancelled swimming lessons got him back to being completely healthy and tried to keep him busy as well; as we could. The worse behavior of slapping his own face and head continued to get worse, repeatedly for sometimes hours at a time. My heart was breaking; all we (Kane) had worked for and accomplished was starting to become lost. By the end of July, Kane’s eye contact was regressing so bad to the point of almost none, he was out of control with aggressive and self-stimulating behaviors. Kane then resorted to what he knew best and his comfort zone… Signing. He started signing and vocalizing “headache”. Constantly, this little angel would sign and vocalize, repeatedly, sometimes before, during or after the out bursts of aggression. We went over and over in our minds what could be triggering the behaviors and the anxiety. The Doctor increased his Risperdal with some relief, when the answers started to come. Kane would be playing like a “typical” child, pushing his trucks, playing totally appropriately and in seconds start screaming, blood curdling screams, hitting himself in the head as hard as he could, signing and vocalizing, “headache”, he would literally start to destroy the entire room with aggression. As he would pull out of the “episode” he would say, “Sorry, accident”, and be perfectly fine again. My motherly gut and heart said something was very wrong. We went back to the doctor and found out Kane is having migraines. Evidently, migraines are “typical” in autism, and believe me I had no idea and thought I knew autism inside and out. (You never know it all) I was never told migraines are very often and very sever in autistics, but we now had an answer to the aggression and self-stimulation.

The Doctor stated Kane on Depakote, which aids in; migraines, seizures, aggression and is a mood stabilizer. He told us we would see a difference in 3-5 days, and if we didn’t, we needed to do a brain scan because my gut and heart was right, something was very wrong. Praying, hoping and waiting, within the second dose of Depakote, Kane was Kane, slowly coming back to the Kane we knew and had worked to. By day 6 Kane was completely back to being a happy little bundle, the aggression ended and the anxiety lowered, we are still hyper as ever, but that is just Kane. Now we can see and know what was/is triggering the migraines; heat, lights and being hungry. We were/are stable once again! We are so lucky to have amazing, talented Doctors that call us back within 15 minutes, get us seen in one day and know Kane and listen to us with complete confidence.

As our summer continued we received an emotional blow to our hearts on a personal note.

I don’t write or talk about this much, so bear with me. From my previous entries you are aware that Kane is adopted and we have open adoption, but what you are not aware of, is Kane’s bio-mother was arrested in December of 2004 for 2 counts of distribution of Meth and one count of possession, all of which are felonies. Here the short heart breaking story begins of my anger, grief, love and compassion. We knew things were getting bad, we had not had visitation since 4 months before the arrest in December of 04. She had called me about 3 weeks before the arrest from our local hospital with withdrawals and in total crisis mode, (which became the norm for her calls). I never will forget the vision of her and her pain. She had quit college and was fired from her job and was doing nothing with her life, but drugs. She looked like death, her hair was falling out, she weighed 92 pounds, had holes in her face and arms and she was a mess, with emotions of tears and pain. So… when we got the call she was in jail 3 weeks later, (I never heard a thing from her for those 3 weeks) I was not surprised. I visited her 3 times in the 58 days she spent in jail. The first visit was 2 days after the arrest and she looked about the same as in the hospital. On Christmas and New Years were my other visits. I told her I could not watch this and go through this with her, it was killing me. She made adult choices and did adult actions and she needed to take the adult punishment for her actions. I also told her; jail was the best place for her; she might live to see 21. (She was 19 at the time of the arrest). I know this sounds harsh but you all have to understand I have known this girl since she was 8 ½ years old, her mother before she passed on, was my very best friend (bio-mom was 13 ½ years old when her mother died), she was my daughters best friend when they were young and innocent, she had become a daughter to me and my heart. The visits in jail were mainly of tears, while I did the talking and questioning. She knew I have always held her accountable for her actions and I was not going to let her off easy. But…I could not fix this one, only she could and I expressed to her she was in a big mess, and the importance of understanding it. (To this day I don’t think I got through to her HOW BAD it really is/was). The year before she was doing outstanding; getting A’s and B’s in college and working 30-35 hours ever two weeks and just threw it all away. After serving 58 days in jail she received bail, never called, didn’t let me know she was out, nothing, this was the end of January 05. I knew things were not better, I had told her in jail she could no longer seen Kane until she was clean for 6 months to a year and done with her law issues. In June of 05 she had her trial and was sentenced to a work ethic prison camp for 120-180 days depending on behavior, Intensive probation after that for 3 years and numerous other little things. She was to report to the camp on June 27, 2005 now at age 20. Our heart breaking blow came to us on July 4, 2005. My 17 year old daughter was at work, at the local grocery store. She called crying and very up set, Kane’s bio-mother had just come into the store very high and made a scene, thinking everything was hysterically funny; she was out of prison camp. After making numerous phone calls, no one in our county knew she was out, not to mention being a holiday, made it even harder to get answers. July 6, 2005 my heart broke into tiny bits, she was out on medical reasons, spending only 3 hours in the prison camp, they just let her go. My mind and heart knew…. She was pregnant again. Finally, after getting confirmation I called my husband and Kane’s bio-father. Now crying and angry for another innocent little angel that will be brought into this great big world, most likely worse than Kane. I came to realize I could no longer help, fix, guide, and save her or this next baby, I could not do it. I started counseling 3 days later. There were lots of tears and lost dreams for this young girl I had loved as my own, over the years, pure heart break and anger. The very vivid memories of the exact moment she asked me and my husband to adopt Kane haunted me. Kane’s bio-father is NOT the father of this new baby. (The new father is 17 years old). The day I had confirmation that she was indeed pregnant was a day of emotions; to anger, pain, sadness, fear, hope and love. Kane’s bio-father told me that my husband and I were angels. Angels come and pass through a person’s life only a few times, if you are lucky you get second chances and we were his second chance in life. Said he was going to take that chance and use it, she was not, and I needed to let her go. We all love her in many ways, but there comes a point when you can’t continue to guide those who do not want to be guided. He talked so much about being so lucky, that he was able to see Kane, know what he looks like, and to see and know Kane is happy, safe and loved. With his second chance he has matured so much in 3 years, he is working full time, will be starting college in January of 06 and has a new serious girlfriend. He sees Kane when his schedule permits and respects us and Kane’s schedule as well. I have now come to realize even more, how blessed we really are, we knew we always were, but it is different now. We know sometimes we get tied up in the chaos of the everyday world and life’s daily stresses, but we continue to see the positive and look for the positive in everything we do now. Everyday I still think and worry about the next baby and the next family that will adopt her next child, which will come into this big scary world in February or March. (March; Kane will be 4, WOW!). But… Now I have peace that God’s will, will continue with what should or should not be. We signed medical releases to help the baby and the next family, but we are physically and emotionally not able to do much more, maybe with time we will be able to find the strength to meet the child, but not for now. This has had an effect on our entire family with the unfairness, pain, sadness, fears and love that the new baby will have to endure. But from day one of this story of our life, we have lived the last 3 years and before as a loving family unit and now we will live the future years the same way. Tuck the good and the bad memories in our hearts and in our minds, we will be stronger and wiser in the years ahead; only looking and believing in the positive, and the strength of the power and love and the Lord.

Our summer continued with the huge annual Czech Day’s Festival, Kane did Beseda dancing all weekend. The children danced 5 times in the weekend with Kane making 3 times. The second to last night he completed all 5 songs for the first time ever, even during practices he did not complete them. He had a smile from ear to ear, he still seeks us out and our faces for reassurance, and we held back the tears of joy and pride so he would not think we had owes. Ha-ha. He wore his Czech costume and danced, smiled and did all the actions with the songs. Here was what we worked for, here time stood still for just a moment, I forgot all the head banging and screaming and all the sleepless worrying. It was just my moment of complete joy, pride, relief and inner love, to the point of almost unimaginable, could this really be happening, yes it was!! I enjoyed every second of that moment I could.

Now for the end to our summer of 2005, we come to August 10-14, 2005.

Our first vacation in 3 years since Kane came to us, we went to The Great Wolf Lodge in Kansas City, KS, and it is a child’s dream of any age. (((See Vacation Link))). A 50,000 square foot indoor and outdoor water park. I was very worried how Kane would transition and adapt. The 5 hour drive went better than expected, we had to stop a lot and take breaks, but it went o.k. I packed everything, except the kitchen sink, we rented a van which Kane also adapted to very quickly and thought it was cool to ride in. On the way there we listened to Kane pound his new tambourine to the music, repetitively and dreamt about that tambourine that night. Ha-ha. The lodge had carts to carry in your belongings, most families used 1-2 trips, us…6, and Kane helped every step of the way. (Patience was a virtue). We walked into the suite and Kane yelled, Oh, new beds and giggled. (First step down) He instantly took the suite to his comfort zone, hummm it was decorated a lot like home, same colors, almost exact same coffee table, what luck. The Lodge was amazing, it is totally family-kid orientated and also geared to special children as well. The Kid Camp Club schedule runs daily, everyday including weekends. Story time, crafts, play time, they schedule 8 -8, there is so much to do you can’t get to it all. What could have been better for Kane? The water park is kids and adult slides, pools, hot tubes, you name it, it has it. They even have life jackets for the little ones, and the entire front pool is wheelchair assessable, there was a wheelchair in the water while we were there. Our first day of our 5 day journey started out with the water park, Kane laughed so hard he would fall over with the giggles from the bucket dumping water on daddy’s head. I sat on the side of the pool watching the soon to be sight become a memory, holding back the once again happy tears of joy, but yet also remembering back the past 3 years like yesterday. Again, all we (Kane) had worked for was being captured in a moment of time with each becoming a memory. I remembered all the pain, tears and work he had to go through from the very start, and not until now did I truly understand why…. The bed time was my biggest fear for Kane, this first night went o.k., and Kane was finally asleep at 11 pm. Compared to 8 pm at home, we were doing good, not being up all night. Our second day was a little more interesting and a true sign of how God works in mysterious ways. I did my normal “me” time in the morning and got up at 4:30 am, sat by myself out side on the patio and the tears came running, but just for complete thankfulness for my entire special family, I sat alone on the patio watching the sunrise thanking God for my family and my life. As I started my day, things became quite interesting. (This might be the time you might want to sit down and continue to read if you are standing). At 9 am the door knob to our suite was wiggling, assuming it was the maid, I opened the door to a young man about 15-16 years of age, his eyes met mine for a spilt second and his head went straight to the floor, I said I’m sorry you have the wrong room, and I shut the door. My gut and heart told me something was wrong, I instantly reopened the door, again to the young man still standing at our door. I asked are you lost, can I help you, and what room number do you need? He stepped back and started shaking his head from side to side grunting, No, no, no, repeatedly, just like Kane. I knew… I put my hands up in front of me and said I won’t touch you, let me help you. He never once looked at me, his head was buried straight down, eyes locked on the carpet squares of wolf’s and evergreen trees. I asked again, what room do you need, do you know your room number? The young man started to become elevated, shaking his head continually still grunting, “No”. He handed me his key and wouldn’t you know it, NO room numbers on the keys. I handed it back and continued to ask him his room number with my hands held up in front of me. The anxiety continued to elevate and he bolted down the hallway in lightning speed. I stepped back into the room said to my husband, I will be right back. My daughter and I took of running down the halls; a maid saw the fear in our faces and pointed to the direction he went. We got to the floor above us and he was at the exact room number above us. 4 we were 3, he had the right room number, wrong floor. My daughter and I waited from a distance to see if he got into the room, he didn’t. He was very nervous and scared, shaking back and fourth, at times his eyes darting towards us. I again, told him I would not touch him, and said, you have the key in back wards, you need to turn the key around, he did but length wise, wow if this wasn’t Kane I don’t know what was. My mind went to my ABA training; backwards to him was upside down. ABA came to me like yesterday, COLORS. I said, the brown side out, the white side in, and the green light will open the door. He walked in the room and I said your welcome, its o.k. He never said thank you, but he looked dead straight in to my eyes over his shoulder and I knew he was saying thank you in his own way. A little brother was in the room, rolled his eyes and said he’s autistic. I said, I know, it will all be ok, so is my son. The brother smiled and looked like he shrunk 2 inches from worry and embarrassment. I know God sent this young man to our door for help, I helped him, but that young man helped me too. For the rest of our vacation he reminded me of patients, luck, love, kindness, independence and hope for and in Kane. I will remember that young mans face forever. We then headed to Worlds of Fun for the day, the word was HOT. Kane went on 2 rides and was so scared, but did do it and all by himself. Yea Kane!!!! That night, we spent at the water park, it is quite noisy, but Kane adapted and loved every minute of it. Watching Kane if you did not know he was autistic, you would of NOT known, he looked and acted like a “typical” 3 year old, having a blast swimming. That evening Kane walked out on to the patio and yelled lots, and lots of pretty stars, ha-ha; the city lights. We all laughed, thinking that we don’t have city lights in a small town and yes, they did look like stars, how innocent a child’s mind is. This was a tough night for bed; at 1:30 am Kane finally was asleep. After having a complete melt down and kicking me square in the lip. (I’ve lost count now, of the fat lips and black eyes, they don’t faze us much anymore, we know he can’t help it when the anxiety over takes him). When he gets control back he says, sorry and starts to hit him self as hard as he can, like he is punishing himself for hurting someone else, it is so sad to see him go through those spells. After 3 hours of sleep, day 3 would begin, this would be a Kane and mom day, the girls and my husband were going golfing. Kane and I did the kids activities in the lodge, Kane did remarkable, but then again crafts are his thing. He was so proud and kept repeating “show Miss Terry, School”. (Yes, show and tell would be coming). The lodge does wonderful with children, the staff all knew Kane’s name and of course that he was autistic and all did wonderful with approaching and speaking to Kane by his name and of course his favorite word, you’re so handsome, you’ll get his attention then. The girls and my husband had a blast golfing, and of course the girls want to take up golfing, now. (Teenagers, ha-ha) That night, again we went to the water park, Kane did 2 slides by himself, dad at the top and me at the bottom catching, smiling from ear to ear; all of us. We also spent part of the night in the neon arcade, Kane laughed so hard, at the smash the beaver game, ((See pic's)) that he could barley stand up and the best part he won two little cars and cars are a hit to Kane. The T-Bones base ball game was rained out so we were a little disappointed but made the best of it. The night went much better; Kane was asleep at 9:45 pm, asleep from sheer exhaustion. The girls spent most of the night in the arcade and had a blast, by the time we left both had over 1,000 tickets to trade in for prizes.

Day 4 we headed to the zoo, Kane did not wake up in the best mood but he managed and the rain held until we were just done. Kane did fairly well, but it was HOT again and a lot of walking. The train and tram were Kane’s biggest hits, with the music piped through out. He danced and danced and giggled. We ended our last night relaxing in the lodge, the girls took Kane swimming, my husband and I had a whole 45 minutes alone. The last night ended with Kane vomiting all over his bed, right before bed. Too much excitement, not enough sleep and too much Mickey Mouse Rainbow Ice Cream. Back to the tub we went, Kane finally asleep 9:15 pm, the earliest ever. Our last morning I woke up at 4:30 am did my normal routine and sat out on the patio to enjoy the last morning of our memorable first vacation. I looked to the interstate to see police lights and ambulances every where, I said a prayer for the families that were involved and thanked God for mine. Wondering and thinking if those families were on their first vacation, last vacation or just a vacation; having the same high hope as I did. I prayed for them and wished them Peace, the Peace as I have.

Lastly, on a personal last note, me… well, things have changed greatly for mom here. I am back in college and enjoying every minute of it, I was in college before we adopted Kane, 3 years ago, but quit due to his needs. I cut off 7 ½ inches of my hair and donated it to Locks of Love. My daughter will be a senior in high school this year and I am sad but excited. My husband is still busy working as a Physical Therapist. Kane will start a full year of Preschool in August. Lots of changes for our family this past year and the year to come, I have high hopes and high goals for us all, and nothing is going to stop us now. We are a family, one unit and we believe more can happen in minute than in an entire year, this year has had many precious minutes. Have a great school year, see you all in January we will be retesting Kane’s Vineland results then, can’t wait to see the results. God Bless you all.

School 2005-2006 Update August 2005 to January of 2006 GROWING UP

We started out the 2005-2006 school year off with some tears of joy and sadness a bitter sweet year, all signs of growing up. Kane started his first full year of Preschool at the same Preschool that he attended last year for only 2 months, due to his age. We started August with total excitement in the air of wondering how he would do, for a full year. To start off, my daughter is all grown up as well, she started he senior year, (makes me a little sad). She started her year off with the traditional Homecoming football game, the King and Queen crowning, and the annual dance, she was so excited to be chosen for one of the Queen candidates, and I was so proud. (Remembering almost 20 years back to mine ha-ha.) She had some tough days the start of the first few months of school, with the break up of a almost year long boyfriend, and me, mom some late nights with her and her tears. She is doing well now…she is taking all of her college general education classes through her high school and she will be totally done with all of her general education requirements when she graduates in May of 2006. She will then start a Graphic Design Program in January of 2007, she is patiently waiting to see if she gets accepted, we will find out this coming February, keep your fingers crossed. The other big excitement in her life as a senior; senior pictures and of course they were beautiful and I remembered many memories as each picture was taken and wondered where the years have gone. She got her first new car, (2002 new to her), did her first loan all by herself, yea!! The first night she went out with her new car, I gave her a 1:00 a.m. curfew, she proceeded to wake me up, so excited to tell me that she has “base” on her stereo, an awesome sunroof and “cool” rims according to the guys. I had to giggle being woken up for that, (she usually wakes me to tell me she is home, if I am not up), I will remember it forever. The grand memory; she turned the big 18 in October. WOW!Now on to Kane, where to start…Kane started his first full year of preschool in August, with 12 “typical” children. The highlight was school pictures; he did amazing, it is one of the few pictures where he is not doing his “silly face”. He looks like a boy not a baby. (((See Pic’s Link)). September came and brought us to the Preschool picnic, things did not go well. The picnic was at the city park in another town, which Kane had never been to; there were all the classes of the entire school, so that made it massive amounts of unknown faces, to him. We did not even eat or attend the program, due to Kane running into the street out of control screaming, kicking and hitting. It was horrible. It was obvious that he was not going to be able to control the triggers, but we tried. We also had the privilege of having a student from the University of Lincoln do her college a-fill hours with us and Kane, she was an amazing helper. She had to do 20 hours with us for her class, she is also a local dance teacher for children in our area and Kane did attend some of her classes, but his strength and attention was just not there. Thank you Chandra for all your hard work, we wish you the very best, and we miss you. Lastly, in September we had another visitor, a special visitor. Margaret; she was the case worker that placed Kane with us in foster care, almost 4 years ago, Wow where does the time go? I enjoyed seeing Margaret since the years have passed and remember the faces of her and Kane seeing each other again. Kane asked for weeks later if Margaret was coming after nappy, to play blocks with him. Margaret if you read this, Please know that you and Kane have a connection and will for life; it is like Kane knows and was thanking you for saving his life. God bless you and your family, come see us again. October came quickly, with a Preschool field trip to the local fire station; I was so worried how Kane would do. He did amazing, was giggling and so excited and he controlled the overexcitement appropriately. At the end of the tour we got to ride in the big, red fire truck back to the school, one child cried and it was not Kane, I was so proud of him. He made sure the entire time I did not leave or move more than about 8 inches from his side but he did outstanding, (Another memory to tuck in my heart), I remember sitting in that fire truck holding back the tears of joy, thinking two years ago that I believed he would never do something like this. Parent teacher conference came next; we got an outstanding report. The funny, double edge sword is Kane talks to much, ha-ha. We have worked on his speech and to get him to be vocal for 3 years and now he talks to much during story time, hummm I think it’s a good thing--- to a point. Now, we just have to get to when it is appropriate to talk. Our last exciting moment in October was going to the Pumpkin Patch with Kane’s Preschool, my husband and I both got to go. It was amazing; COLD but amazing. The “hit” for Kane was the hayrack ride, with the tractor. Kane is tractor and trailer crazy right now. All of the children got to pick out one pumpkin, boy what a hard decision where you are 3 ½ years old and there are hundreds of them, ha-ha. Which brought us to Halloween, Kane was an elephant, we tried the costume on for weeks before; he did ok. He wore it to school and actually took some pictures, he did go Trick or Treating for a short time in our neighborhood, to people he knew. November came with Thanksgiving and this was a memory of a special holiday I will never forget. We had our Thanksgiving on the Sunday before with few people, but special people; it was not the traditional family, but it was our family. It is kind of funny to list all of the people and how they connect to us, but for all of you reading to understand why it was so special, I need to list them. My bio-logical daughter, Kane, my adopted son, Kane’s bio-logical father, me and my husband, my husbands three daughters, one boyfriend, one fiancé and a foreign exchange student----see untraditional but what a family. It was so much fun, Kane’s bio-father brought us an Asian pot, basket and beautiful lantern, and taught me how to make sticky rice; dumb me, I thought we were going to “cook” it, no… you steam it, and we were laughing so hard. I hope that Kane can remember that day, and those moments of his heritage, and how much fun we had. We will cherish the items for Kane to have some day. This was the first time, we all sat down at the dinning room table together, I don’t really remember what the food tasted like, I just remember looking around the table and smiling to myself how nice, how blessed we are. Kane sat like a big boy and ate without any aggression or anxiety; it was a sight to remember. We ended our November on a sad note, one of Kane’s preschool teachers had a miscarriage, this rocked me and my thoughts of Kane’s bio-mother being pregnant again. We prayed for so long for Miss Michelle to get pregnant and then we turned our condolences to her and her husband of losing the blessing of their child. We still continue to pray for her and her husband and thank God every day that she is a part of Kane’s life, for he will touch her life, and she has and will continue to touch his. Our dearest sympathy goes out to Miss Michelle and her husband and we thank her for all she does for Kane. Slowly through out the last 3 months was when we started to see Kane decline again, some days were great, some good, some bad, and some unimaginable. Over the months of September and October we tried to take Kane of his Risperdal to see how he would do, (remember the life of the drug is only 10 years) we gave it a fair chance, with horrific outcomes. Kane was on 4 pills a day, we got him down to 1 and problems broke out, it was so sad to see how out of control he became, in days. He was back to square one and declining every day, again. We went through blood draws which were excruciating; I have no idea how they will ever do one again, now that Kane knows what they are. His Depakote level was in the normal range but a little low so they increased that. We had an EEG the day before Thanksgiving to look for seizure activity; good news; none, (remember Kane had over 20 some a day, as a baby). By Thanksgiving I was at my wits end, waiting on answers, the Doctor re-started the Risperdal, increasing slowing and us trying to be patient; one knows what patience are when it comes to autism, I’m beginning to think they should have named the disorder Patience. The behaviors were all back; severe aggression, the ticks, the stem, all of it completely back 110%, in full force. Now, we are back on four Risperdal a day and three Depakote, along with vitamins and other med’s, it is a long, lengthy process. Now… we are slowly stabling out. We had high hopes and dreams to be off the med’s and we gave it a fair chance, but it was not possible for Kane. So we do our best, and work hard each day to make each day special, for we will never have that day back.December came with the Preschool Christmas program, we were so proud once again; Kane did 2 songs out of 5 and went up for story time. Kane’s bio-father got to attend for the first time; it was quite emotional for all of us. Our Christmas was busy, like everyone’s. We made the best of the triggers of all the newness in the environment and remembered our past year with joy. Kane has found new items of interest in the last six months; we are Bob the Builder; literally. He has a cell phone like Bob the Builder, sings (screams) the entire song, and knows all the words to the movie. Trucks and anything with a hitch is the new obsession, he hooks as many together as he can, like a puzzle. I think we have hooked about 8 together now. Pens and pencils still remain. Kane is also in a big boy, twin bed now but…he prefers to sleep under it. Ha-ha, (that enclosed comfort issue). We have gotten the potty issue down, but we are still working on the number two issue, with no luck yet…we will get there. On a mom note; I am still in school, some days I think I will never get done, but some how, some way it always does. I am still getting honors and I still have that high goal. I have hopes of graduating next fall, but I try to leave it open and take what comes each day, one day at a time. Things to come in 2006, we will attend the annual Sesame Street Live for the 4^th time, Kane’s bio-mother is due sometime in February or March, my daughter’s senior prom and high school graduation in April and May, me and my husbands 6^th anniversary in February, Kane turns 4 in March, summer camp for Kane, the annual Czech Day’s in August and possibly another vacation in July. Wow, sounds like a busy year when I write it. God bless everyone, Have a great 2006, see you in May of 2006.

Please click on 4 yrs and 5 yrs for next up date.