|
Update January to May 2006 Kane is 4 years old! Wait and See...Good Tears and Sad Tears First before I start with our life: I am considering doing a Walk for Autism Research in Nebraska. This would be a huge job and an even larger event. It would be through the National Alliance for Autism Research and Autism Speaks. What I am asking; is if anyone would be willing to help and be part of the team to put this event into motion. By joining a walk step by step we’ll find the missing pieces. This would take about a year to plan and it would be volunteering your time, work and energy. What you will get… is the rewarding experience of the end result of walk day and seeing a community pull together to form a united front, doing all they can do to find the answers to autism. If anyone is interested please email me at autismkanesworld@zoomshare.com There are a lot of new things added to the web site, be sure to check them out, power points on Behavior Management, Multiple Intelligences, Biomedical Interventions (vitamins) and Bernard Rimland. New shopping cart items and more to come in the next few months and new pictures.
Ok, now for our life in 2006; we decided not to retest Kane’s Vineland test because of the issues with behaviors we were experiencing, we will wait for now. We started the New Year out with the annual Sesame Street live, no seizures this year and Oscar the Grouch WAS the hit. The rest of January continued ON basically the same path of trying to get back on track with medications and behaviors. We continued with our same Psychiatrist and all the other numerous doctors and things just continued to get worse and worse and worse. It seemed as if the Psychiatrist was at a road block with what to do with Kane. He suggested a hospitalization and a medication flush; we were not pleased to hear that, to say the least. I wondered and worried profusely how his little body would be able to with stand a medication flush and then add to the problems-put him in a hospital room out of his home environment which is Kane’s safe and comfort zone… not a possibility! Things seemed to never want to level out since we did the medication flush in the home last summer, how in the world would a hospitalization work. After weeks of trying to get into a new doctor that specializes in autism, we were exhausted, sad and mad to say the least, no one would take new patients and no one took children under the age of 5 years. Now what?
Finally, with my persistence and never taking the word NO lightly, I got my foot in the door to the new doctor…but not until March 16, 2006. I didn’t care if I had to wait 2 months; we had already been waiting. I was told he was willing to see Kane only on a one time consultation, and then he would decide, that day if he would keep him as a routine patient. In my mind; he WAS going to keep Kane, I wasn’t going to leave that office until he did, NO was not going to be tolerated; March would come eventually, in the mean time February came with many tears, fears and prayers.
February came with even more trials! My 18 year old daughter had had her yearly physical in January, and things came back BAD, she was loosing tons of weight, (dumb me; thought she was just not eating; a teenager dieting, me giving her every lecture I could about anorexia and had her in counseling) (I guess now, counseling can’t hurt anyone, I just wish I would have thought more about her health and listened to her, that she was eating). Her Pap smear came back “abnormal”-was the words. Yes, 18 years old! Our doctor told us to wait 3 months and retest; NO I don’t think so…our family history is too scary to wait…waiting seemed to be the concept of the year of 2006. We went for a second opinion and they said the biopsy needed to be done immediately. From there we scheduled a biopsy the second week of February her senior year. (She had the biopsy done on me and my husbands 6th anniversary). We hoped for a false positive. NOPE, it was precancerous cells of the cervix. The biopsy did not go well, she got extremely sick and was in ER and missed about a week of school. Kane was still not doing well either, and to make things worse he sensed something was wrong with her. His emotions were on his sleeve and he cried all the time, I know now looking back; he felt the tension, fear and her just not being the sister that helped him.
The unbelievable part of this; as a mother of an 18 year old daughter; was there were senior girls in her class that didn’t even know what a pap smear was. I was shocked!!
So here goes my lecture; all you mothers out there EDUCATE YOUR DAUGTERS, IT MAY SAVE THEIR LIVES! Talk to your daughters, open the lines of communication, it maybe hard, embarrassing or difficult, but it is necessary; how else do they learn, they maybe teenagers entering into adulthood, but they are still your children and they still need guidance. Don’t wait, get second opinions, I thought about all the young college girls that may have been told the same, “oh, just recheck in 3 months” and how many would believe that. DON’T, go again, and get answers. The Doctor that we received our second opinion told us, that with the technology today there are new machines that are catching abnormalities so much more. An hour physical once a year, is something so simple; help them, guide them, and save them. OK, I’m done now with my lecture.
The next week after the biopsy she had the surgery to remove them; we were told the first step was freezing the cancerous cell, if they come back. then laser them off and the worst and last possibility-would be to start removing portions of the cervix. We had the freezing the end of February (I did not faint while I held her hand and told her to keep breathing but…as they were doing it, I looked in her eyes and I saw her as my baby, not my 18 year old daughter becoming an adult, I bit my lip and held the tears back for her and her utter fear) now we wait…the worst part we are currently still waiting now in May. We wait for three months and recheck if the cancerous cells are gone. So now in May of 2006 we have been retested and are currently awaiting the results. ((6-01-06 SHE IS CLEAR!! WE WILL RECHECK IN NOVEMBER OF 2006))
In the meanwhile, she was supposed to have her interview for college to get into the Graphic Design program. Well…she did not get in, but went to the interview, shortly after the procedure. I was so sad to give her the denial letter. In the end when I told her, she was relieved and had decided she really didn’t want to go into Graphic Design, and really didn’t know what she wanted to do with her life. Hum, imagine that at 18 with all the rest of the stress that she was dealing with-a lot to take in at any age. She is back with the boyfriend that broke her heart last summer, so now the tears have went from a broken heart to health issues, fears and life’s decisions and changes.
On a different note; on February 21, 2006 at 7:59 am a new baby boy, weighing 6 pounds 8 ounces came into this world, born to Kane’s bio mother. We don’t know much….we know she has the baby and the state is doing home checks. We don’t know the health or what the future will hold. We have a picture and have tucked it away for Kane someday, if he should want to know when he gets older that he has a half brother; but for now we have closed that chapter in our lives; and pray for a healthy, happy child, and a drug free mother. We still do not have contact with her and have not since she was arrested two years ago. It’s time for me to move on…I am at peace with this now, I hope she is.
On a positive note we have visitation with Kane’s bio-father every Sunday at noon, he never misses and we all wait and cherish the visits. Kane knows him and sits in the window waiting for him to come, it is a site that gives you “happy tears” (sometimes, those happy tears can get ya more than the sad ones). Kane does know him, Kane does understand and Kane does have the capacity to love and laugh. Kane may not understand the entire why’s of why he comes to see him; but someday he will and he will remember this young man; that looks just like him coming to see him each week. The questions and answers that Kane will have someday will be so much easier to explain and understand. And when that day comes, when Kane wants answers to his questions; we will all do it together; always…for Kane. When he leaves Kane does the same; laughing, smiling and waving out the window.
His bio-father has the same girlfriend and is scared to death to have anyone, even someone special in his life meet and get to know Kane, (because if you meet and get to know Kane, you have to meet and get to know autism and it is hard to explain to people that do not know and understand what autism is). (I know the feeling; when someone in the community asks how Kane is, it is easier to say good, great, wonderful; than horrible. I used to be honest; but then I started seeing the “looks” of why in the world did I as her that question; or the “look” of what kind of a mother are you; or the “look” of yea, right; or the best one yet, is the “look” of how can I get away from her with out being rude, I wish I wouldn’t have ask her how Kane was; or my favorite the dreaded stare with the jaw on the ground. Yup, for sure; for those of us that live with autism we have all experienced those “looks”--- those “looks” are heart wrenching and even funny to a point.
Autism is a very unique disorder to understand, I don’t think anyone can ever understand it entirely, even people that live it. But…I do think now...that Kane’s bio father understands more of the “scary” parts of it. The hardest is WHY, we all want to know why…for now, we all have left the WHY’S go…it is better to just live for today and for Kane, which is what we all do- LIVE and LOVE KANE!
March is finally here! And Kane is 4 years old on the 6th. We had a big birthday party and I do believe that he actually knew for the first time, what a birthday is and that it was for him. The party went great and he did as good as he could; the noises still bother him but he has found coping methods that help.
Next, came the new doctors visit, it went wonderful. We are now on tons of vitamins, (see vitamins link and Biomedical Power Point for an larger indepth view). HE IS KEEPING KANE AS A PATIENT! See I told you I would not take No! Ha-ha. We are now currently, trying to do a medication flush in the home, not the hospital, (which he agreed was not appropriate for Kane). We are doing things differently than last summer; instead of taking him off a does every 3 days, we are taking a does away every 3 weeks. We have started with Risperdal, then we will go to Depakote and Abilify. As for the vitamins, I don’t know if I have the words to express what they have done for Kane. The biggest change is his speech, eye contact, behavior and his emotions. His speech has soared, and he now actually “feels” things (if that makes sense). We not perfect and we won’t be, and that is ok, we are better and slowing working our way through all these medication changes. I don’t know that one vitamin made more of a difference than another; but I do think that GABA and DMG has had the most effect on his speech and behaviors and the Melatonin on his sleep. We set up medications and vitamins each day, with a list close by to keep track, we are down to 3 Risperdal from 5 a day. It is along process, removing one every 3 weeks, but it is working so much better than removing one every 3 days.
Kane is on; Ability, Depakote, Risperdal, Flovent and Strattera (four medications) plus fluoride. Vitamins; Kane is on; B-6, Folic Acid, Super Nu-Thera, Melatonin, DMG, TMG, GABA, Vitamin C, Melatonin plus Magnesium, DMAE and Selenium (11 vitamins). Yes, a lot! (((See vitamins link and Biomedical Power Point for what does what))) We go back in August and have high hopes of being off all the Risperdal and maybe even one of the three Depakote; time will tell. When I left that Doctors office that day after an hour and a half consultation; I was crying before I even got to the car, (that he WOULD follow Kane’s care), I had so much relief lifted, I don’t know what kind of tears they were happy or sad just…relief. He treated Kane as a little boy, with feelings and emotions, not as just a “kid with Autism” he treated me, mom as a mom, not a worry wart, or a complainer or a nut. Here is why…He has a 15 year old son that has autism! (Makes a big difference, when you have lived it).
Autism never ceases to amaze me; I am always learning more and more, no one can ever know it all, or learn it all. Here is what I learned from this amazing doctor; he gave me some wonderful books that have great information; (Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm, Facing Autism, by Lynn M. Hamilton, and 1001 great ideas for teaching and raising children with Autism Spectrum Disorders by Elle Notbohm and Veronica Zysk). My mom lesson learned; Kane has Autism Spectrum Disorder; Kane is not autism; he is a child, a person, with feelings and a heart just like you and I; he is NOT autism; he is many other things that are so much more important than autism. (Does that make sense?)
“Typical” Preschool continued for Kane all year; with him doing amazing things at school; he has friends and they all dote on him, especially the girls. His preschool had a fundraiser chili feed the weekend of his birthday, the kids sang songs and Kane did it, and did the actions to the songs; Yeah Kane. The teachers there are nothing less than angles from above; they have done so much for Kane; there are no words to explain what they have done for Kane’s life and future. Thank you Miss Michelle and Miss Terri!
We also started a new ABA aid the first week of March; Brooke. Kane loves Brooke and we do too. She comes to the house 3 days a week, and Kane is doing remarkable work with her, of course I have to leave the room, ha-ha, so he can do his work! He does not want mom to watch. Thank you Brooke; for joining our family, and including us in your family, with your brother; whom is special as well.
April of 2006 came to be very busy. We started the month off with a community fair at Kane’s school and we were to help with it; well…we left before the event even started. The school environment was totally different than the school days; Kane was confused, the fire engine with its sirens; sent us home in a hurry.
Next came the annual dentist appointment; it went well. I was expecting the worst; we even cleaned and polished the 4 four front teeth; two on top and two on bottom, that was the most we could get, without making the visit go in a bad direction for next time; good memories are what we want; I can’t even imagine doing a cavity…ever.
We then started micro soccer for 4 weeks in April and May; one hour a week. It was not a fun experience for any of us…COLD and RAIN. Kane did great, by the end of the four weeks it was noticeable that he did get the concept that the ball needed to go through the orange cones. (Maybe not by foot, but it did need to go through the cones some how, ha-ha). Kane does not and has never been able to deal with the cold, I think because of his birth and having a temp of 88 degrees or lower. He just can’t stand to be cold. Out of all of the four sessions, we did not make the entire hour, but one we made 50 minutes once (even with the cold); Wow Kane!
Easter came with a dinner at my mothers and an Easter egg hunt; Kane’s bio-father got to attend with us. It was a wonderful time. Kane actually knew to get the eggs and put them into his basket. (We died eggs the weekend before with Kane’s bio-father as well, we all helped and Kane painted his own egg, Yeah Kane.
We ended April with parent teacher conferences at his preschool with an outstanding report of progress and growth from last year; mainly speech and learning to cope, instead of screaming or throwing.
We ended April with my daughters senior prom; what a night of tears for mom… the last prom. She had a beautiful hot pink dress with antique brown lace, that we shopped for an entire day for, it was the very first one we tried on, but kept looking, and of course we went back and got that very first one. Ha-ha. Her and her boyfriend looked amazing (((see pic’s))); we prayed for a safe night for all. They were so tired they left post prom at 3:30 am, if you left you could not won prizes. Of course, she won an IPOD and did not get it; she was soooooooo mad at her self for leaving, a half hour early.
And last, May 2006. A mother’s month and year you wait all your life for but dread all of your life. My daughter’s high school graduation on Mother’s Day. The weeks of yard work, cleaning and cooking started way before the actual day. We did it differently than most graduations; we had a Taco, nacho bar, taco dips, and fruit with a chocolate fountain, which was the hit. The graduation went wonderful, and the party went even better. Kane wondered around the party and even got his own piece of cake. We had sent over 80 invitations times two, so we knew there could be some major issues for Kane. All in all Kane did outstanding; he kept saying we were having a birthday party, ha-ha. My daughter asked all week how long she would have to stay at the “family party” (like all teenagers they want to go and hang out with their friends). The funny part; the last ones left; my husband, Kane, me, my daughter, her boy friend, Kane’s bio-father and his girl friend, how typical! Ha-ha. Even as well as Kane did, for the actual ceremony and party, (with no nap) we paid for it for the next three days. Kane struggled with many emotions being very teary and whiney; we are slowing getting back to routine, getting the environment back to being Kane’s and getting him caught back up on his sleep. The hardest issues for Kane were not having the cars in the garage, because of the tables; he was so confused by that; all the people and the noises. (By the way we had so much food left…but Kane has now polished off the cake with his sweet tooth). Ha-ha.
Thank you to all who came for the graduation, near and far; we had a wonderful time and appreciate all you do for us. Now, life’s decisions come for my daughter; the current decision---cosmetology, she will start in September, live at home and drive to school. She is having some difficulties of how to leave Kane; she believes that mom can’t do this with out her. I have tried to explain to her that Kane is not her responsibility, but she feels guilty, as we all do, if we don’t give Kane 110%. It’s ok for now that she lives at home, but someday she will have to fly out on her own wings, with out Kane and without the guilt of “leaving” him—she needs a life of her own. I know that is easier said than done; for all of you other families that have older siblings know that this is actually “typical” of a sibling. And for now, me mom; I don’t want her to go either, (not quite yet), she’s still my baby; I only cried twice the entire graduation day, I was rather impressed with myself; (held them back a lot).
This brings me to the end of the 2006 school year for Kane as well. He did outstanding; we were unable to attend his end of the year music program; being on the same day as graduation. We made a judgment call and decided graduation is once in a lifetime event, Kane has two more years of preschool and to take him during the party would have been harder on him than not to go.
Some other things that didn’t quite fit any where; that we have tried over the months; were a weight vest; it did help with the hyperactivity but he hated it, and it even was Bob The Builder, ha-ha. The other is light therapy; he has a 12 in square light in his room that has smaller squares colored and it lights to different patterns of his music; this has helped tons to calm his anxiety and sleep. Chocolate or well the caffeine in chocolate, has help with the behaviors and outburst; I know it sounds a little weird, but I am the biggest skeptic out there…now use what works.
Now, if someone could bottle sunshine for the winter, or invent a ceiling sun light for the winter, I would be impressed and the first one to purchase it. We are always worse in the winter months, which is typical with autism.
We still deal with perseveration and hooking things together; mainly strings and hitches to trucks or cars. The new one is clothespins; I think we were at 42 once. Strings are the worse for the anxiety; Kane took an entire blanket in his room and ripped all of the strings out of it; he had rug burn marks on his pointer fingers and thumbs from pulling them so hard. The anxiety goes down when he does this, but when strings will not hook together to make “big long ones” as he calls them; the anxiety sky rockets and he bites his fingernails and his hands. He has learned a little, to cope better with his anxiety; by asking for loves (hugs), but it is still a challenge.
Our other challenge; we are potty trained fully; but we are not bowel trained. This is a major problem, not wanting to go on the big potty; fear. We will keep working on that one. The last major step that Kane accomplished recently, was riding on the lawn mower. He has hated the lawn mower and has had outlandish fears with the lawn mower noise. One day he said to me, I try! I helped him on with daddy and away they went. He did it!! You could see how scared he was with his lip quivering and his anxiety way up, sitting in the autism stance. But he did it, that’s all that counts, he tried! Another goal; to pedal his big boy bike, by the end of summer. Kane now counts to 17 and knows the letters of his name; we are still working on the other letters. Safety has gotten much better, we still have some concerns; but the receptive language skills that he has gained in the last year, have help that.
Things to come in our summer; June will have 2 weeks of camp at preschool, 5 days for 4 hours a day, he will attend this alone; yeah Kane, we are so proud of you. This will include a trip to the zoo. His first Bible School, at church for one week for 2 ½ hours a day; his ABA aid will attend this with him and my step daughters wedding. July brings us swimming lessons; with hopes to complete them, last years he was so sick we had to cancel. The next big event will be a vacation again, you will have to check back to see where were going and how it turns out. And last the annual Czech Day’s celebration; Kane will be Beseda dancing again. Busy summer!
My husband is still crazy busy as a Physical Therapist; I often wonder how he transitions from work to home, into autism. I commend you for all the work and support that you give me; I know it is hard for you to adjust from work to home. I also know that there are some days where I miss and lack the adult conversation of not working outside the home and I go on and on and on, thanks for listening and being patient. I also know that we as a family will continue to support each other and will all continue to strive to do our best and live each day one day at a time.
On a mom note; I am still in school, I have slowed down a little for the summer with only 6 credits. The last semester I was at 12 credits; full-time status and about lost my mind, it was a little much. But I am very PROUD to announce---I ended the semester with a 4.0 grade point average and a cumulative status of a 3.857. I am very proud of my self and my family for allowing me to do this. This fall will be the same; full-time; I hope to graduate a year from this coming fall; we shall see.
Thanks for taking the time and supporting our life and the web site; to all the parents, family members and individuals that send emails; we appreciate all of them. Hang in there and always remember things could always be worse; smile, love and laugh a day is to short not too. Hug your children and guide them to the best of your abilities and say your prayers when each day ends; not for a better day for another day. God Bless, and see you all in August 2006; have a safe and fun summer!
Update May 2006 to August 2006
Honesty, Sacrifices, Love and Something More
This entry is dedicated to all the children with autism that work every minutes of their lives just to “live” and to all the parents, siblings and guardians that help them work so hard and love them unconditionally!
On the other hand; this is also dedicated to those people that have no idea how children with autism have to work and cope every day and what family members sacrifice for these children whom they love unconditionally.
Hi everyone; were did the summer go? I am going to warn you all now; this is probably the hardest entry I have ever written. I titled it just the way I felt. Vacation did not go well this year. I have pondered how I would ever write this entry without it sounding so devastating and depressive. So instead; I decided to write it honestly! Because that is autism; harsh, cold, cruel, and a real nightmare; at times. Since I have come to know autism; this was the first time in four years that I actually hated the word; AUTISM! Is that honest or what? I don’t like it, I don’t want it, I don’t want research it, I don’t want my sweet little boy to battle it, I want it to GO AWAY!
So here goes the entry…when I read the final copy I realized (after the fact) this entry didn’t really sound like me or my previous writings. I then realized I needed to regenerate and rethink Autism and that is just what I did.
Now in August, I am ready to fight again!! As for any of you parents of children with autism you know what I mean----I think this is some what “normal” to lose you way; while fighting this horrifying disorder. But, I truly believe it is what makes us all keep fighting the fight for our precious children. Sometimes it is a good thing to lose you way, in order to find your way back and be productive.
Here is the next honest statement; if you really don’t want to “know” how Kane is; don’t ask me! If you really don’t have time to hear the bad with the good; don’t ask me! And if Kane is with me, ask him how he is; not me! Don’t give me those looks, of I feel so sorry for you; when you really don’t and really don’t have any idea! And please don’t stare! And lastly, don’t whisper about Kane or anyone in my family, because some day it might be you or your family others are whispering about and then you will know how it feels!
Think before you speak and live your life like someone is always watching, because…your children are watching!
Now as for the children and the family’s members of autism; I commend you, pray for you, cry and laugh, and love just the same as you! You are special people and no one should have to have, deal or cope with this disorder; but we all do; with nothing less than the highest form of dignity, pride and love. So hold you head high, smile and know there are others in this big world that do “know”, do understand and do feel just as you do.
To start off I wanted to share an email that was sent to me; maybe it will help everyone reading this entry understand a little “more”.My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes.Of course, that’s what she says. That’s what mothers have always said.Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat out ugly.Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close.Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.Some mothers leave the hospital with a healthy bundle; then months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of the devastating news. It can’t be possible! That doesn’t run in our family.Can this really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw; rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony.Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.Every body will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medications or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serous disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the clichés and platitudes, well-intentioned souls explaining how God is at work when you occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one—saluting you, painting you as hero and saint, when you know you’re ordinary.You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose Me! I’ve got what it takes.”You’re a woman who doesn’t have time to step back and put things in perspective, so please; let me do it for you.From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil.You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.You can be warm and tender one minute, and when circumstances require, intense and aggressive the next.You are the mother, advocate and protector of a child with a disability.You’re a neighbor, a friend, a stranger I pass at the mall.You’re a woman I sit next to in church, my cousin and my sister-in-law.You’re a woman who wanted ten fingers and ten toes; and got something more.YOU’RE A WONDER!
On with the entry…We ended May with a cookout on Memorial Day at Kane’s bio-fathers, girl friends, parent’s house; ok; did that make sense. We had a wonderful time and Kane made a new friend; a baby puppy. They rolled in the grass and played and played.
Next; came the news that my daughter was free of the precancerous cells, I did place an update on the last entry; but some of you may not have seen it; now she will retest in November and hope for a clear test once again.
June was a busy, busy month for us…the first week Kane had summer camp for the entire week; he went every day for 4 hours. (The same place where he goes for preschool during the school year) This was way more hours than during the school year; normally he only went 2 days a week for 3 hours each day. Kane did wonderful; which did not surprise us; he loves his preschool and he loves his teachers and all of his friends. The only difference that I was concerned with was, that it was camp so there would be way more kids there than just 12, but in the end he did outstanding. We ended the week of camp with a trip to the zoo; we all went; mom, dad, my daughter and Kane; we had a wonderful time. The children got to play at the park before the zoo; this was so fun; Kane use to be very scared of any platforms that you could see thorough (holes; in most of the park toys) but he adapted instantly. (((See Pic’s Link of the park and the zoo)))
The zoo…any where we go that has animals is a hit to Kane. Kane looooooooves animals; ants are the favorite. I get to “the ants” later. Kane is also into goats and fish. (((See Pic’s Links))) The amazing part; he is so gentle to the animals at the zoo which is something we have worked very hard on with Kane.
The second week of June was the start of Czech Dance called Beseda Dance. It is a wonderful, free activity for all the children in the community. They practice every Monday from noon to one so they can dance at the annual Czech Day’s festival in August. Kane loved dance; or well…loves the music—polka’s. He thrives in music it is a site to see him “boogie”.
The 15th of June took us back to the doctor we had seen in March; we were originally not scheduled until August but Kane had been having some behavioral issues since the end of May and we were still were doing ABA three times a week; so nothing had really changed for Kane other than no preschool, but he had had camp. He was back to screaming and crying most of the day; the worst was the perseverations on things, and I mean preservation---repeating something at least 50 times in 2 minutes. He would also hit and kick basically when ever he did not get his way or just out of the “blue”. So we went into the doctor early; hoping to get control of his behavior before vacation in July. The visit brought increases in vitamins; GABA and DMG and the addition of Cod Liver Oil. On a positive note; it brought decreases of Medications; Depakote and Risperdal. So….he increased his GABA and DMG to two times a day and added Cod Liver Oil four times a day. And increase the medication; Abilify to three times a day. And took him off of the Depakote and Risperdal----slowly is the word. (Currently in August, we are off all 3 doses of Depakote and all 5 doses of Risperdal). YEAH!
The 16th of June came with my step daughters wedding; this we were worried about for Kane being an hour away from home with pictures being at 5:30, the wedding and the dance. So, we decided to stay in a hotel; (yes, being out of our environment is stressful but in the end the decision was if I needed to get Kane out of there I had a place to go locally and my husband could stay at the wedding for his daughter) Kane danced and danced and danced; people were loving him. He wore bright orange shorts (orange and green are his obsession colors) and a plaid orange and blue shirt with an actual big boy tie and sandals; he was adorable!! In the end, it did work out very well staying over night. My daughter and her boyfriend came along so they went back to the hotel with Kane and me around 10:00 pm. At 1:00 am Kane was still up; not understanding why we were not going home in the yellow car. It took everything I had not to break out giggling, even with it being 1:00 am and exhausted. He would hide under the covers and pop up saying “peek a boo; good moooooorning” in his sweet little voice; after about 20 times of saying that I could not hold in the giggles and of course Kane got the giggles and we were up until about 1:30 am and he arose in the morning about 5:30 am. Short night!!!
Monday; June 19 came with a new member to our all ready “farm house”. I don’t remember, but I don’t think I have ever written about our pets, if I have it may have been briefly. Well… the new addition is a puppy---we named him Pooh Bear; don’t you think the name fits; with Kane and Winnie the Pooh!! ha-ha Ok, so here is our “farm”---Max—is a calico cat we have had since my daughter was in kindergarten; we took him in for his check up and he was almost 17 pounds; here is the funny part…they estimated him to be between the ages of 105-107 years old; but the age chart did not go any higher and when we got him he was full grown not a kitty so….he may even be older. When people come to the house they think he is a lion, ha-ha. When Max passes this will be very difficult on the entire family; he has a sixth sense with Kane when he is sick. Of course Kane cannot lift him; but when Kane calls him, he comes to Kane like a dog.
Next, is Allegra a Persian cat. She has inherited the name “girly” from Kane. This is a cat that takes everything, from Kane carrying her around by the neck, upside down. Kane is very protective of her; I think since she is so little; about 7 pounds and she takes everything Kane dishes out to her.
Next, the dogs---Alex is a mutt of some kind with Pomeranian. He is the guard dog of the house and the safety dog; he barks, barks and barks if someone comes to the door or if Kane opens the door and tries to go outside; he is the one that does NOT take Kane’s behavior, but would protect Kane with his life.
Next, is Winston or Winnie—the PUG, his is a “fatty” according to Kane and does not have a mean bone in his body; he just snorts. He also takes Kane’s behavior and puts up with about anything. He runs wild playing tug of rope with Kane and then crashes being so tired he can’t move for hours.
And lastly, the new addition is Pooh Bear Lhasa Apso and poodle mix. He came to us on June 19, 2006 as a puppy. He came from Brooke; Kane’s ABA aid. Kane is in love with this little guy and calls him sweetheart pooh bear. It is a site to see them play and hear Kane’s belly laugh. He is so hairy you can’t even see he has eyes, ha-ha. He is a lot like Kane; hyper! Right before vacation in August he almost died---I will get to that too. So, that is our farm; it is quite the household. Kane is learning so much with the animals…being gentle, nice and responsibility in more ways than one.
The week of June 19 was a new concept for Kane; he went to Bible School for the first time. He attended this with Brooke his ABA aid and did very well all week. The program…another story! He saw dad and his sister and that was the end of that. (((See Pic’s))) There were two churches together doing the week so I think he was just overwhelmed by all the people. He walked in with the group and me; crying and then started screaming. After I took him out, he did manage to go back in but not with the class, but he did do the actions in his seat with us to the songs. That week I also tuned the big 37. I think after you hit 21 it is just another day. In fact when my husband told me Happy Birthday, I laughed because I had not even remembered it was my birthday, does that mean I am getting old since I didn’t even remember it? Hum ha-ha.
The last week of June again was Bible School, but this week was at the same place he goes for preschool, so Kane is and was familiar. He did outstanding. He did the entire program for the first time ever, yes mom went up with him; but he DID it all. Yeah, Kane! It was rather funny, watching him tap his foot to the music and pretending to strum his guitar. (((See Pic’s))) The sad part of this; my daughter did not go this time. This was the first one she had ever missed- thinking he would not do it, and she missed it. She was so mad at her self for not going and missing it. The interesting part…right before the program he asked “Where’s TA-TA.” We explained to him she was at work and he accepted that. They are soooo close!
As you can see June was very busy for Kane. July came in the same way. The 4th of July came with a cookout at our house; we had a wonderful time Kane enjoying the fireworks; this was probably the first time he really understood what they were. Last year he did well, but this year when he heard very loud ones, he would laugh his belly laugh and loved them; he was not scared at all. (((See Pic’s))) We also continued with the weekly dance practice every Monday, and also attend the weekly summer reading program at the library on Wednesdays. Some of these I attended with him and some Brooke his ABA aid attended, the story reading part of sitting still is still a chore, but the crafts and activities at the end are always a hit for Kane.
The Next week came to our vacation; we left the house at 8:30 am on Saturday July 15 and was gone until Friday July 21. Now, let me back up to a couple of days before we left. Pooh Bear; the new puppy started to vomit Wednesday night all night, and I am not taking just a little; he was vomiting nonstop. Thursday morning he started with uncontrollable diarrhea and had a fever and was doing nothing and I mean nothing. Kane and I rushed him into the vet. I remember those 11 miles to the vet; thinking if this little puppy dies how I am going to explain this one to Kane. We got to the vet and they said it was bad and he had a 50% chance of dying. They needed to keep him for 5 days and start IV’s; he had just been vaccinated and they thought he had Parvo; If any of you know what that is; it is not good and usually ends is sudden death. We left him at the “puppy hospital”, the next morning we took Alex and Winston in to be kenneled for vacation, since they were scheduled for it anyway. Pooh Bear had made the night, but they were still watching him very close. The entire family was shedding tears by Friday night and we were all worried about leaving him and going on vacation. We all said our good byes and our prayers as we left for vacation; and hoped when we returned Pooh Bear would return home with us.
Vacation July 15-21 2006 Branson, Missouri
Here comes more honesty, I did not like it. In fact; it was horrible. There were too many people, it was HOT and traffic moves at a snails pace. We left home Saturday July 15 and drove all day in the am; we stopped to go the bathroom and guess what? I had remembered to pack everything, even things we did not need… and while packing I was bare foot, YES, MOM HAD NO SHOES! Hum…maybe that was a sign of how the rest of the trip was going to go, I had jumped in the van with NO SHOES; so when we stopped for lunch we had to find mom shoes for the week, ha-ha.
Next, we stopped at the Precious Moment’s Chapel in Carthage, Missouri. (((See Links))) This I enjoyed; it is beautiful! Kane did not have the patience for this but I could have stayed for a long time and just wondered around. What he did love, was the fact that he caught a huge butterfly for his bug catcher. Ok, now let me explain this bug catcher. I had purchased little toys to take on vacation to help him with down time. The night before we left, he spotted the bug catcher and it went everywhere Kane went and still does. Now…in the backyard; we find ants. Big ants, little ants, fat ants, little guys, cute ants, wiggly ants, mommy ants and adorable ants; according to Kane. I hope I did not miss one there. Yes, at least 3,000 times a day we all get to see ANTS and BUGS.
So, for the rest of the drive there Kane did outstanding holding this gigantic butterfly in his bug catcher and saying “Go fishing”. Remember the word perseveration. This is what this vacation was…preservation, imagine every day, all day and night long, hearing go fishing, daddy fix it, I need lubs, screaming, I have an ant, I have a bug, it is a cute one, etc. Now every time you read a sentence at each period just think of him saying those statements in a row about 5 times each. Yes, the perseveration is just a tad bit stressful.
We finally arrived at 6:30 pm at our condo; it was 102 degrees (remember we left home at 8:30 am). The condo was beautiful on Table Rock Lake. It was called Still Waters Condominium Resort in Branson, Missouri. (((See Links))) The condo was huge and about the only cool place in Branson the entire week. Kane loved it, it became his comfort zone. It had two bedroom, two baths; one with a Jacuzzi, a living area with a patio, a full kitchen with a stove, frig, microwave, toaster, pots and pans and about anything you could want to cook with, there was also a dinning area and grills outside. (((See Pic’s))) the place was huge and very nice. Right on site, they have 3 pools, of course the lake, a game room, a market, free bikes, volleyball courts, playgrounds, a marina, kayaks, paddle boats, inter tubes, which are all free. You can also rent boats, jet skis and other bigger items. Of course, the first thing on the list after unpacking was finding fishing licenses and some where to eat. We settled for a pizza place and took it back to the hotel since it was so hot. I had also brought Kane a bug vacuum that went with his bug catcher and he vacuumed bugs all night long. But…I do think my daughter’s boyfriend enjoyed the vacuum just as much! Ha-ha. He and Kane caught mosquito’s most of the night. The vacuum is very neat; you suck them up and then they are magnified, and then you can open it and let them go. Kane was finally asleep at 12:15 am, first night, not bad.
Sunday, I awoke at 7 am for some me time, there was not much since Kane was up shortly. Today was 107 degrees. We went fishing; I tried to get the video on the web site with no luck! It was the highlight of the entire trip. Kane was so excited about fishing and would laugh his belly laugh when the fish would wiggle! The fishing was great; you would put your pole in and have a little tiny fish that fast right off the shore. We caught 6 fish; two got off, one got out of the fish (“bug”) catcher ((the bug catcher became the fish holder)). I was quite surprised that Kane dealt with the life jacket, not one issue, it was like it was part of his clothes and he just put it on, amazing. He also never had any issues with letting the fish go. That noon we ate at a Mexican restaurant that was outstanding and somewhat cool inside. The next fun; we rode the Ducks. This was a hit for Kane, but he was a little confused that is was called a Duck, he loved going in the water. I don’t! I can’t swim and I am frantic if I can’t see or touch the bottom, water is not mom’s thing! But the ride was fun, he didn’t like the wind and it was windy, by the end of the 80 minute ride he was almost asleep. I was amazed how he dealt with the duck “quackers”, every one got a quacker and you were to quack when you saw another duck and let me tell you it was loud, Kane just covered his ears and actually blew on his a couple of times. (((See Links))). By the time we got back to the condo Kane was crying and tired. That am he had vomited, well spit up him meds and vitamins so I was not quite sure if it was the heat or what; and my husband did not feel well either that day. We did get Kane to nap with much effort; he was better after that. In the evening we went swimming in the lake and of course Kane wanted to catch fish with his bucket. (((See Pic’s))).
Here was a good thing; the entire trip, every time we stopped we tried to take Kane potty and he would throw a huge screaming fit. That night during supper he yells go potty! WOW! Yes, he told us. So for the rest of the trip we decided to let him tell us and he had no accidents the entire trip with potty, now that is a landmark in his life. We grilled out supper that night and enjoyed a night at the condo. At 10:00 pm Kane said “go by bye in yellow car”, and then finally said “go nappy” and realized we were staying there again. Kane was asleep 10:15 pm. Can you believe that, the second night?
The bath tub was so large being a Jacuzzi, which Kane was petrified of, so by the end of the week the only way Kane would take a bath was with his sister. So each night she would get on her swimming suit and she and Kane would play with the water monsters and the water squid in the Jacuzzi. Now, at 18 years old; I would say that is one huge sacrifice and one caring sister! What are we going to do when she goes to college in September? The rest of the night we sat outside on the patio and had an enjoyable evening. It was very nice for my daughter’s boyfriend to attend; it was so nice for my husband to have a guy around for once. (Since he has 3 girls, my daughter, me and Kane). We called it a night around 12:30 am.
Monday, I woke at 6 am and within about 15 minutes a tired little Kane joined me. We went fishing that morning because it got so hot during the day you could barely stand it. Today was 103 degrees with 70% humidity, hum are you starting to see the heat pattern!! We caught 4 fish that day. That day we went to Silver Dollar city, (((See Links))) this is where we got Kane’s tail braided, (((See Pic’s))) his tail was 7 inches, who would have thought with all those curls. Ha-ha. It lasted the next day, I was hoping it would have lasted for Czech Beseda Dance in August; but he pulled it out. They had told us it could last anywhere from two months to one year. I did not care for Silver Dollar City, lots and lots of people and it was very HOT. Kane would not and did not go on one ride. But we did manage to go on the train; (Thomas the Train according to Kane). We arrived there at 11:00 am with hopes of going through Marvel Cave but when I saw there were over 600 steps I knew there was no way. We stayed until 2:30 pm with much effort. The teens stayed until 5:00 pm and we went back and got them, they had a blast on the rides other than the lines were so long and the heat of course. We did manage to get Kane a nap again; this was the day Kane was starting to decline. After nap we again went swimming in the lake and “tried” to catch fish in the bucket. This night we cooked spaghetti in the condo and enjoyed the cool. After eating; they all went fishing again and gave mom some alone time. No fish!
I had packed tons of things that Kane liked; for if there were major problems and now I pulled out the paints. I could see things getting very stressful for Kane; the anxiety was slowing brewing. That night Kane was in bed at 9:30 pm and the rest of us at 10:30 due to pure exhaustion and the heat; I can’t even tell you how HOT this week was.
Tuesday was 103 degrees, I do have to add, Branson is beautiful, but the roads are solid hills and cures and the kids were feeling car sick most of the time we drove. This was a big day; I awoke at 6 am with Kane in toe. Now, I realize why I am a early riser at home; I need that alone time to regenerate me and to get my mind in gear for the day and autism. This was a tough day…no honestly this was the start of a nightmare; this was the start of that horrible word AUTISM AND THE MANY COLORS OF IT. We started out with horse back riding; Kane was so excited to ride the horse; it lasted long enough to blink your eye; once he sat on it and realized it was huge. The teens took the 40 minute ride and loved it. Kane, daddy and I fed the horses and Kane was content just doing that. (((See Pic’s, check out the one that says KEEP OFF FENCE, I am going to submit it to parent magazine))) The start of the behavior triggers was when we went to Talking Rocks Cavern (((See Links))) Kane got a compass with a string, remember strings are horrible triggers; we want them tied and we want them how Kane wants them; not crooked; which is about impossible to do. I loved the cave (((See Pic’s))) not many of the pictures turned out, it was so dark. My husband carried Kane the entire 80 minute tour, I have no idea how he did it; 200 stairs, wet and small entries. It was a little nerve racking. The interesting part is the cave stays 62 degrees all year round. There were places where you could see a dragon head, an angel and a cross, it was unbelievable and beautiful. There are also pictures of me and Kane mining for crystals; this was fun except once again---Hot and he did not have the attention with it being so hot. We had planed to go through the Wings of the World (birds) which is located at the same place, but Kane was so out of sorts by the time we got done there was no way. He screamed and screamed and screamed, kicked and kicked and kicked all the way back to the condo; and for some reason he decide no one could help him the rest of the week except daddy. (After getting home; we had come to the conclusion it was because he is not around dad as much as mom; normally he only sees dad for a few minutes in the am and a couple of hours in the evening after work and on the weekends) And remember dad is the softy compared to mom, ha-ha and Kane was going to play it to the fullest. This caused much stress and tension with all of us, and of course Kane sensed it. I had the tears most of the night and I was so stressed out by then I didn’t believe or think it was a vacation at all. The screaming “dad do it” and all the other sayings became repetitive with perseveration so bad I had to go take a walk and get myself together; it was horrible and the end of this vacation was not near.
I just wanted to wish, pray, wash and scream myself…autism go away. It is so frustrating that as a parent there is so little control; I want to fix it, I want to end it. It is not fair that a child so sweet and innocent should have to deal and cope with this. It is a miserable disorder; a disorder where everyone that is associated with it through LOVE sacrifices almost everything in their life every minute of every day. During my walk; I had no other words for it; it is MEAN!!
We finally got Kane down for a nap after Kane had spent numerous times in time out. For supper we went looking for the Floating Café; we did not eat there it was not the cleanest place. But the walk was worth it, (((See Pic’s))) we walked across the main dock and there were turtles and big fish floating right underneath of the dock. There were geese right by the edge of the shore and seashells. This was a site to see all the big fish and turtles swimming right underneath you. We finally found a restaurant after driving about 2 miles down the midway in about an hour and a half; needless to say everyone was, hungry, hot and not happy. To top it off the restaurant was having air conditioner troubles just as about every restaurant there; I was really beginning to think they did not use air conditioning and this made it much more difficult on Kane because no matter where we went we could not get him out of the heat; except for at the condo. He does not handle the heat at all; remember last summer he was having migraines from the heat.
On the way home the kids wanted fishing poles and Kane wanted Ice cream so we made the slow travel back and got both. We were back to the cool condo around 9 pm and sister did the bath time routine with Kane, again; Kane was in bed at 10:15 pm. I relaxed at the condo while Kane slept and the rest went fishing in the night. They had so much fun fishing off the dock. My daughter was bound and determined to catch a fish before the men--with NO luck. Ha-ha.
Wednesday came at 103 degrees an even worse day for Kane than Tuesday. Kane awoke at 5:30 am; we stayed in for the morning and made a big breakfast at the condo. My husband left to go to Wal-Mart to get another card for the camera and more water (I took 2 cases of water with us). Kane had a melt down instantly when he left and kicked the door, threw chairs and was in time out most of the time he was gone. It was very extreme. (Wal-Mart…triggers, triggers and more triggers; do I need to say more of why he did not go along with him). We had saw signs along the way for Predator World and since Kane is obsessed with animals we went; we really didn’t have it planed. (((See Link’s))) This was awesome; again I tried to put the video on the web site with no luck. The kids fed sting rays, YES, fed sting rays! My daughter, the one that thinks it is gross to touch raw hamburger; even fed them. Ha-ha It was quite the site, you can see some of it on the pictures but not a lot; they would come straight up to the top of the water and beg. They have two mouths; so you are actually giving it to them in one mouth, there was an enormous one; but I could not get a picture, it was so dark in the place. They also had an entire section of just snakes, it was not for me. Ha-ha and you can also see Kane touching an alligator, again no video; rats! This place Kane did ok other than he was still perseverating on everything; tractors, trailers, trucks, strings and clip boards; every where we went this is what Kane looked for.
Right beside Predator World was the Haunted Adventure; the rest went through the 35 minute haunted house while me and Kane sat outside and looked for bugs, bugs and even more bugs. Ha-ha. They said it was the best haunted house they had ever been to. After 37 minutes some ones goes in and helps you out; I was starting to get worried what was taking so long, and there they came; wet and laughing. That was our morning; we did manage to get Kane a nap once again. After nap we went fishing and caught 3 fish. We again stayed in the cool condo for supper and made Lasagna, since we had plans of going to Celebration city that night (((See Links))). (They don’t open until 3:00 pm and close with the fireworks show at 10:00 pm). This was what we all were waiting to go to; the fireworks! If you go to Branson this is a must see- it is called Ignite the Night; it is a firework show with laser lights to music and water; it is every night at 9:30 pm. It was about 20 minutes long, at the beginning Kane screamed bloody murder from the loud music and fireworks; I think it was because it was so dark and he could not see. He calmed down and watched with his ears covered, it was extraordinary. Again, no video, darn I wish I could put them on the web site but, they are too big. Kane did not ride on any rides but the teenagers did. When we left Celebration City at 10:15 pm; it was still 95 degrees outside and humid, it was miserable heat.
Here is an interesting thought, we walked from the front of Celebration City entrance to find the firework entrance, there was a fork in the path; we went down the path with the lighted caterpillar, after that we headed back to the entrance to look for a tractor for Kane, NO tractors. When we headed back to the fork in the road; when we got to the fork, we decided not to go on the path with the caterpillar and go the other way to see where it went, Kane went crazy, threw himself out of the stroller on the concrete, yelling that way, he had mapped that park out and thought we were going the WRONG way! Interesting; I truly believe I will never get lost when I am with Kane! Kane was very happy when we got back to the condo; he was in bed at 11:45 pm.
Thursday was 106 degrees and Kane was up at 7:45 am, Wow Kane! We went to Ripley’s Believe it or Not, this was ok, I guess if you have seen one you have seen them all. Kane did not like it; to loud. The kids had spotted a Water park called |
