How do I help you to say goodbye?

I know it's been a while since my last blog entry.....I apologize for that. I knew after my last post that this next one would be the most difficult to write -- sharing how I explained "death" to our Autistic child. As difficult as this will be for me, I know it's a story that must be told....and perhaps our experience will help someone else. I guess that is the whole point of this blog right? To give me an outlet -- a place to tell our story -- and at the same time, hoping that our experiences will help another parent or another child dealing with Autism.

I can honestly say without a single doubt in my mind.....every challenge, etc that we've faced thus far -- is nothing compared to the challenge of how to explain death to a child. It's hard enough for a "normal" child to deal with....but when Autism is thrown into the mixture, it is the most difficult thing in the world in my humble opinion. As I said before, aside from the death of a family pet (a cat)....our children haven't had to face the loss of someone close to them -- someone they loved -- until the death of their beloved uncle Frank.

Our youngest son understood it on some level....as did son #3, but I think since they are both still young it really didn't sink in until they were at the funeral home and saw their uncle's body in the casket. Son #2 took the news hard -- and he closed himself off & shut down his emotions for quite a long time. He loved his uncle more than words can express....my brother is the one who helped to fuel his passion for anything and everything "Star Wars". During each visit, they would sit and talk about all of the different characters in the various movies, etc. and my son loved to show his uncle the new figures he had. My brother loved old cars, swap meets, etc. -- and you'd often find him at some type of swap meet or toy show, selling his wares with the rest of the vendors. We'd often go to the local toy show to hang out & spend time with him.....I remember the one year, shortly after his cancer diagnosis...the kids & I went to spend the day with him & his wife at the show. We walked around and looked at all of the items, and he helped my son pick out some new Star Wars toys. It was funny watching my brother teach my son how to "wheel and deal" with the vendors.

And of course he helped "Taz" as well....Taz loved everything about cars....Hot Wheel cars, race cars, Nascar, etc. -- if it had wheels & could be driven, he loved it. Thus my brother would talk to him about cars, engine parts, and everything in between. My brother was always so patient with Taz -- would answer the millions of questions he had without treating him like he was being a royal pain. Frank was impressed with Taz's photographic memory and his ability to rattle off facts about various cars or race tracks. Aside from cancer, my brother also had Parkinson's....I don't remember if I mentioned that before or not. Due to the health issues, my brother wasn't able to walk as easily thus he resorted to using a motorized scooter to get around. Well Taz just LOVED that scooter....and in a matter-of-fact tone one day he said "uncle Frank, when you die can I have your scooter?" Instead of getting angry, Frank just laughed and said "no, I'm taking it with me." Yep, he had a dry sense of humor! Every time Frank's butt wasn't parked in the seat of that scooter, Taz would try to climb on it. Frank never got angry though...he'd just smile and say "Taz, get off the scooter". Taz would plead with him to take a ride on it, and Frank would just smile and say "not today". I look back on those memories now and just smile....I love the way he always joked with Taz about the scooter and how patient and supportive he was.

The day my brother died, I somehow managed to pull myself together and finish the social story book I had been working on that would help with explaining death. I included basic pictures of things like a casket, urn, grave, tombstone, etc and simple info that explains what happens when our body dies. I also included various religious information (both Christian and other beliefs). I wouldn't have been as prepared had it not been for the help of my in-laws (who own a funeral home)....they were wonderful with providing photos and information. I strongly suggest to anyone reading this -- if you have to discuss death with a special needs child -- have a book -- either one of the many books that are out there (I didn't like most of what I found, thus the reason I made my own)....or make your own simple book. To also help prepare the child (and this goes for all children, not just special needs children), try to visit a funeral home ahead of time so they can see what the inside of the building looks like and perhaps even allow them to see an empty casket....stop at a cemetery some time and explain about graves and tombstones.....doing things like this will be extremely helpful in preparing them for what to expect. If you can remove some of the fear of death ahead of time -- it will help them to understand it all and to be able to grieve in a better way.

So anyhow.....on the day my brother died, once the school bus arrived, I was armed and ready.....prepared to share the sad news with the children and prepare them for what would come next....the grief and funeral. We sat and talked, shared our favorite memories of their uncle.....and we cried.....so many tears. I explained to them that although it made them sad to know their uncle would no longer be here with us on Earth, they should also be thankful that he was no longer suffering....no longer battling the cancer that was slowly destroying his body. They should be thankful that their uncle was no longer in pain.

The day of the funeral came.....as much as I tried to prepare them, nothing can really prepare a child for what they will experience. No matter what grief I was feeling at the time, I knew I had to push it aside -- pull up my big girl pants -- and be "strong" to help them deal with everything. We walked into the room, greeted other family members....and slowly began to walk around and look at all of the floral arrangements and photos that had been hung up on the huge poster boards. Once the children felt comfortable, I asked if they wanted to approach the casket.....I walked them up, one at a time and gave them the chance to say their final goodbye to their beloved uncle. Finally it was Taz's turn.....I didn't want to force him to approach the casket, yet I wanted him to be able to see that yes that really was his uncle -- so he could make the connection somehow in his brain that yes his uncle was gone. All things considered, he did well -- we walked up slowly, he asked a few questions and then said "bye uncle Frank - I'll miss you".....then quickly ran off to the safety of the other room. We allowed him to sit in the "side room" as they called it, away from the rest of the crowd during the funeral service.

My heart ached for him.....and I couldn't help but wonder -- "did he really understand all of this?" -- "Would he ever be able to express the correct emotions over losing someone that he loved?" He never cried -- not once. Although I could tell just how much it was hurting him -- his brain just wasn't processing the emotions the way that it should. He was more concerned about other things -- how long the funeral would last, where would we be going afterwards, would we be stopping for something to eat, etc. While we were there for the visitation and funeral service, we stopped at my mom's house to visit with her. I remember sitting there watching mom & Taz talk to each other.....both in some ways lost in their own little world -- their minds not working the way that they should be. Mom's Alzheimer's had gotten worse, thus even though she was taken to the funeral home separately so she could say "goodbye" -- she didn't seem to grasp the fact that it was her only son laying in the casket.....she didn't seem to understand that her son had just died. In some ways I guess I'm thankful for that -- thankful that her mind couldn't process it all....thankful that Taz didn't seem to completely either. Perhaps that was a blessing in some ways?

I knew in my heart that either way, the true test was yet to come.....my mom's health declined after Frank's death, and we would lose her just 8 short months later. As difficult as it was to lose my brother -- our children's beloved uncle -- I knew in my heart that it would be ten times worse when my mom (their only living grandparent) passed. All of our children were so close to her -- and Taz was always so protective of her -- he would hold her arm to help her walk, push her around in her wheelchair with such love and care, etc. Yes, as difficult as it was to lose their uncle....the true test was yet to come....the only question being -- would I be able to be strong enough to help them get through it? Time would tell.....

Middle School

We survived Fifth grade....and worked to prepare our son for the transition to Sixth grade. Not only would this transition involve yet another new school building (attending class at the Middle School), but also a whole new "can of worms" -- having to wake up earlier each day (the MS & HS kids start an hour earlier than the Elm kids, and get out an hour earlier), having to change classes each hour, being around other hormone filled teenagers, new teachers to deal with, new staff to deal with, a new aide, and riding the bus with High School students.

As if that wasn't bad enough, we found out at the very last minute that our ISD rep had been offered a new job -- thus the district was in the process of trying to fill his position and we had no clue who the new guy would be. The other TA/ISD person who rotated between the buildings, working with all of the AI students was planning to retire....thus the school district would also be looking for someone new to fill his position. Our "go to" people -- the two guys we always had in our corner -- were leaving and we had no clue who would replace them! Neither one of them had the guts to tell us they were leaving, we had to hear it "through the grapevine".....they didn't even bother to say goodbye! Boy talk about feeling totally abandoned! As we prepared for Sixth grade, our "safety net" and "go to" people were gone -- we were completely on our own! We met with the new "team".....created our own transition story -- which of course I've had to create every story that has been used thus far to date, so that wasn't anything new -- but it really stunk trying to enter the whole Middle School transition with no one to guide us, no one to provide insight or info.....

The Sixth grade was a struggle.....but regardless of each hurdle we had to jump and each new battle we had to fight, we did what was best for our son. The "team" quickly learned who I was -- they learned that I would be there to help in any way possible and would be their best friend -- their "go to" person -- or if they tried to push their ideas/plans too far (like the numerous "hints" that perhaps we should put our son back on medication) -- well suffice to say they quickly learned that I could also become their biggest nightmare. They learned just how involved I am -- they learned just how vocal I am -- and they learned very quickly that I'm not like some parents that can be easily bullied or swayed into accepting their mantra of "we know what is best for your child". They also learned that although they could push me to the point of tears on some days -- they did not want to try their "bully" tactics on my husband! Like the lion that calmly stalks it's prey.....they saw first hand at one meeting just how much my husband can push back! My husband will go to hell and back -- fight the devil himself -- for our children.

So yes, aside from the many new battles we had to fight -- and the numerous hurdles we had to jump, our son seemed to do ok with the class changes and challenges of Middle School. There were some issues here and there, a few meltdowns....but despite it all, he thrived academically. All of his classes were general education classes -- he did very well, especially in Math. We found out later that he was the ONLY Sixth grade AI student to make the honor roll for the entire year. We were thrilled by that news....and so were his former teachers at LTC. Of course as they say, nothing good lasts forever......just as things were starting to calm down and go well, life threw a few new hurdles into our path. 

Our son was having problems with his ears, and we discovered that one of the tubes never came out -- it was fused to his eardrum and causing pain & problems.  He would require surgery as soon as possible to avoid having permanent damage done to his hearing. While he was recovering from surgery, life threw us another curve ball.....my brother Frank, our son's beloved uncle & biggest supporter -- had cancer. Frank had battled cancer on & off for almost two years -- we thought the worst was over and he was finally in remission -- we were hopeful that this time he had beaten the cancer for good. But our hopes were quickly dashed.....and it wouldn't be long before our hearts would be broken. The cancer was back -- and this time there was nothing the doctors could do. 

The only bright side to this -- if you want to call it a bright side -- is that we had participated in the Relay for Life ACS event each year for the past 8 years, so our son Taz understood on some level what cancer was. That year, when we went to Relay....instead of trying to run off or do something that would stress me out like he had done in previous years, Taz stayed right at our booth & helped out. He walked the track with us, and even when we were tired and ready for a break....he wanted to keep going. When I'd ask him why, he would say "because I'm walking for uncle Frank." He was so proud of the fact that he had gotten a t-shirt for his uncle.....and we gave it to him later that month when we saw him. We spent time with Frank and family in November of that year, and although you could tell that he was weak and worn down....he laughed and joked with us and the kids. I cherish those memories now and am thankful we had that time to spend together.

My brother had told me during that visit in November....if something were to happen, he did not what me or the children to be there at the end -- Frank went as far as to make me promise him, that when the time came -- I would not be there. He knew how hard it would be, especially for our son "Taz"....and he wanted to spare our kids as much pain as possible. Our mother - Taz's grandmother - had developed Alzheimer's a few years early, and she wasn't doing well either at the time. Thus my brother knew that we would have many new challenges to deal with soon enough.....and if the worst were to happen, then he wanted to spare our children the pain of having to watch their uncle die. Typical big brother -- still trying to protect me as much as he could even though I was a grown adult. Just like our father (who died of cancer years before my kids were even born), Frank put the needs of my children, especially Taz -- before his own. Although it broke my heart to not be at his side when he took his final breath....I kept my promise. I take comfort in the fact that I was at least able to speak to him on the phone right before he died, so he was able to hear my voice as I said "I love you big brother" one last time.

I wasn't there by Frank's side that cold February day in the hospital when he took his final breath and left this earth.....I kept my promise. The kids were at school when the phone call came telling me that he had died. I fell to my knees and just sobbed. Although it felt like someone had just ripped the heart from my chest, I had to push aside my own grief and feelings....and find a way to explain to our son & other children that their uncle had died. I had already started a social story about death....and had to work quickly to finish it before the bus brought them home from school. My mind began to race with a million thoughts -- I had to prepare "Taz" for what to expect at his uncle's funeral. Although he understood on some level what cancer was (all of the kids did), he had not experienced death -- so I had to find a way to help our son understand that this was it -- his uncle was gone.

Public School....Part 2

Delighted by the changes in our son's behavior and feeling more confident that we had made the right choice by discontinuing the medication, especially due to the problems it was causing for his heart....we had more confidence as our son began Third grade. Our son loved his Third grade teacher -- she was wonderful! His fellow classmates were very accepting and compassionate towards his issues.....and finally for the first time since he entered the public school system, we felt confident that things were going in the right direction. Yes there were still some minor meltdowns and issues....but things were finally going well.

Of course at that point, the "powers that be" at the school were still upset that we had chosen to discontinue medication....so they tried to throw a monkey wrench into things as much as possible. "They" wanted us to switch our son from the inclusion/general education program to the special needs/resource room classroom (for no logical reason of course - just so it would make it easier for them to keep all of the kids like our son in "one place"). Of course when we pointed out the flaws in their logic/argument for that and basically put our foot down and said "NO".....they looked for other ways to battle us. "They" decided that our son was too attached to his aide.....and it would be in his best interest if they made a change, and assigned a new aide to work with him. Of course we failed to see their logic in that idea....our son had worked with Miss "A" since he attended LTC. She knew him, knew what triggered meltdowns, knew how to calm him down, etc. He was comfortable with her -- he trusted her -- and he worked well with her. As much as we argued and fought, the school won out in the end....and a new aide was assigned to our son.

That was the worst thing they could have done!! He did NOT click with the new aide at all. I honestly can not put this in a polite way....she was a total bitch (sorry if that word offends anyone). She would yell at our son for every little thing, tried to push him to conform to doing things like all of the other kids, refused to let him wear his headphones (he has super sensitive hearing).....and the list goes on and on. Our son began to regress.....behaviorally, academically, etc -- you name it -- it happened. We tried to survive the best that we could because we knew the transition to Fourth grade would be coming soon and that meant a new building and a new teacher (and hopefully the switch back to his former aide).

Well the transition to Fourth grade came and went....and the "powers that be" wouldn't grant our request to assign the previous aide to work with our son. During Fourth grade things really "hit the fan" -- at least 3 or 4 different aides worked with our son (they kept switching things up), the teacher was timid about working with him and preferred to let the aide take him to the other side of the room & close the divider -- so they could work one-on-one separate from the rest of the class....the other students began to treat him like some type of freak and/or outcast.....he was losing friends at a fast pace. He began to have more frequent meltdowns, started to become aggressive, and was cycling back into previous behaviors (things he hadn't done in years!).....he was frustrated, we were frustrated -- and the school was of no help at all.  The teacher finally changed her attitude a bit towards the end of the school year, but by that point it time it was too late in my opinion.....our son was already on a backwards cycle.


To top it off, he was getting sick a lot.....numerous colds, sinus infections, ear infections, etc. A visit to the ENT's office determined that he would require surgery to remove his tonsils and adenoids....and would need to have tubes placed in his ears. Of course this news put me into a whole new level of panic. How on earth would I explain to him what needed to be done? How on earth would we get through the surgery and recovery with him being a special needs child? It was difficult enough trying to take him to a normal doctor's appointment....and it took at least 4 people plus myself to hold him down when he required a shot or any lab/blood work.....how on earth would he get through a surgery? Granted, he was verbal and seemed to comprehend stuff easier than some other children...but still, this was what I considered a major surgery. As much as I searched, I could not find anything that would help to explain what had to be done....as many "professionals" as I questioned, no one had any info that would help to explain things to him. So.....I decided that if I couldn't find something, I'd make my own social story book. The day of the surgery came.....things went fairly well, although it was difficult for the nurse to get the IV into him and they had to give him something to help him relax a bit first. Recovery went fairly well, although afterwards it seemed like there was one issue after another.....and the remainder of the school year was very difficult.....for our son and for us.


Now it was time for Fifth grade.....the teacher was horrible (she made it very clear from day one that she did NOT want an AI student in her classroom), the aide was extremely difficult to work with, and it seems as though there was one issue after another. Our son was suppose to have a laptop to use for certain assignments but the aide refused to allow him to use it -- only because she had no clue how to work the various programs -- thus it sat on the teacher's desk and collected dust. To top it off, our son began to have more health issues & was going through one growth spurt after another.....and I was stressed beyond belief. It got to the point shortly after the Spring Break holiday, where I was being called to the school almost on a daily basis. After numerous meetings with "the powers that be" -- we decided it was time for our son to be switched to the "home base" program......thus he would do his school work from home. Unlike normal homeschooling, with the home base program there would still be support provided by the ISD and school district. The school district would provide all of the assignments & tests for him to work on at home, and he would still receive speech therapy. During Fifth grade -- the teacher, aide and school staff did not follow the terms of the IEP.....there were so many IEP violations it isn't funny! Thus I could have fought them and made things really ugly....but I just didn't have the energy to fight any more.....

I was tired......tired of fighting the school, tired of fighting with doctors, tired of fighting with the ISD. I felt beat down.....and as if all of the wonderful progress our son had made just a year or so earlier was slowly slipping away. I began to doubt myself as a mother.....maybe "they" were right -- maybe he wouldn't be able to graduate from school, maybe he wouldn't be able to drive a car, maybe he wouldn't be able to hold down a job....or any of the other things that "normal" kids would one day do once they reached adulthood. Maybe "the powers that be" were right -- I don't know, all I do know is that I felt like a complete and utter failure. Our son went from a straight A student to struggling with his assignments....he went from having friends and being accepted by his peers, to being treated like some outcast -- "the weird kid that wore headphones"......I felt lost and alone, unsure of how to help him and how to get him back on track academically.

Looking back now on things.....I can say with almost 100% certainty that the issues that occurred were a result of a combination of things -- the health issues (including the tonsil & ear tube problems), numerous growth spurts and what effect that had on him, and most of all -- the numerous battles we had to fight with the school & ISD. Perhaps if they wouldn't have pushed us to do what they wanted and changed around his aide (among other things) -- perhaps some of this wouldn't have occurred? Perhaps if they really would have considered what was best for our son -- some of these issues and the backwards cycling in behaviors wouldn't have occurred? In all reality, he was one of the few AI students to be placed in a full general education setting -- and they didn't know how to handle that. I guess if nothing else, one positive thing that came out of all of this -- the school district & ISD learned from their "mistakes" -- now there are better programs in place on the Elementary level for other AI students who are capable of being in an "inclusion" general education program, there are low stim rooms with all sorts of equipment in them (instead of using a little closet with a bean bag chair as a "low stim" room).......and the teachers, aides, staff, etc are better trained on how to work with children like our son. It just sucks (sorry, can't think of another word) that our son had to be the ISD & school's "guinea pig"......it sucks that I had to educate a majority of the staff on how to work with an AI student, create schedules & PEC's cards for them to use, write all of the social stories, etc. And it sucks that because of "the powers that be" and their inabilities....our son ended up struggling so much and slipping backwards in his development & academics.

Public School....part 1

I apologize for not posting anything new over the past few days....I have been super busy. Aside from daily life duties (housework, being a mom, paying bills, etc)....I've had school events to deal with, numerous meetings, and other family issues. Why on earth does the school district insist on trying to cram as many events as possible into the last few months of school? Book fairs, field trips, "fun fair" days, IEP meetings, etc -- seriously don't they realize that life is hectic enough for parents without trying to squeeze time into an already busy schedule for all of these extra events as well? Anyhow enough venting about that for now.....on with our story.....

Although my husband and I had many concerns regarding the transition for Taz to public school, we were excited by his progress and hopeful that this transition meant we were heading in the right direction. I wish I could tell you that things have gone smoothly over the years....but that would be a lie. Each new school year brought with it a new set of challenges, new issues to deal with, and new battles to fight.

After surviving the first transition to grade K, the transition to First grade wasn't that bad....at least in some aspects, since Taz was in what they called a "multi-age" classroom with the same teachers from grade K.....and classmates that were at the same grade level as he was, (kids who had advanced from grade K to First grade) thus they had become familiar with some of his issues & quirks. We dealt with the issues, meltdowns, etc the best that we could.....switched around the medication a bit and continued on with the journey. Second grade meant a move to a different school building.....more transitions, more meetings, more battles. Sigh.....

During his Second grade year, after trying numerous medications each with different (negative) side effects.....we decided it was time to go "med free". Part of that decision was due to the problems the current medication was causing with his heart. It was causing his heart to race, almost like he was running a marathon during slow calm times (like when he was reading a book, playing quietly, or sleeping)....and during high activity periods (like recess and P.E. class), the medication was causing his heart to slow way down. After several tests and consulting with his doctor, we determined that the majority of medications on the market contained similar ingredients.....so switching medications wouldn't solve the problem. Thus if we continued with medication, we'd be putting him at risk for serious heart problems. Although the school balked at our choice -- I explained very clearly to them that I would NOT risk having my son have a heart attack just because they wanted him to be on medication so he'd be easier for them to deal with. In all reality, no matter what their argument -- the choice was OURS to make....NOT theirs, because he was OUR child.

Neither my husband nor I were prepared for what happened next. Within a few weeks of stopping all medications, it was as if someone flipped a switch.....our son began to change for the better. He began sleeping through the night, he was eating better (still picky but didn't have as severe of a gag reflex), was more focused, and seemed to be overall a lot happier and "normal" (for lack of a better word).....and most of all, there weren't the daily meltdowns like before. Now his meltdowns were few and far between, and for the most part were no where near as severe as they had been when he was on medication. It was like a night vs day difference! To top it all off, our son was doing amazingly well academically -- needless to say, we were thrilled with the changes! I can't say for certain if these changes were 100% due to discontinuing the medication...or if they were due in part to growth spurts, etc. -- but I can say that regardless of what caused the changes, we were thrilled with how things were going.

Mommy doesn't take naps

While chatting with a friend today, I couldn't help but laugh when she said "you look tired, you should take a nap when you get home." A nap?!? Seriously.....who has time for a nap? Aside from the lack of time during my normally hectic day.....bad things seem to happen whenever I try to take a nap.

A perfect example....remember the Vaseline crop circle I mentioned in a previous post? Well back in the days before Autism....the Vaseline crop circle was the result of a nap. I had recently given birth to son #2 (if I remember correctly he was only about a week or so old at the time this occurred), and "Taz" was in full toddler mode. The baby had been fussy & kept waking up throughout the night.....and I was exhausted by the time I finally got him to go back to sleep. Of course by that time, the alarm clock started to beep....time for hubby to wake up and get ready for work. Before either of us could hit the "snooze" button, Taz woke up and was full of energy. I tried to convince him that it wasn't time to wake up yet.....begged him to lay down and go back to sleep......even offered to let him sleep in the "biggie bed" with mommy. I'm not sure, but I think I might have even offered to buy him a pony or some shiny red sports car if he'd go back to sleep -- but that didn't work either. So I dragged myself from the bed and tried to prepare for the day ahead as hubby left for work.

Just a little background info.....when son #2 was born, the doctor had suggested putting Vaseline on the circumcision area to help with the healing process and also for pain (that way his little "boy part" was coated down and wouldn't hurt when he went pee pee in his diaper). Well being the thrifty mom that I was, I purchased the big industrial size jar of Vaseline. I won't even go into the strange looks, etc that I received when I purchased said jar and asked the clerk "is this the largest size you have?" Now I'm sure if I had purchased said jar at one of those huge outlet "buy in bulk" type stores, that wouldn't have happened.....but at a small pharmacy they apparently think you're some type of weirdo if you do that......oh well.....anyhow.....

Taz just loved to be a helper -- from the moment his little brother was born....he was always right there, eager to help. Whether it was handing me a diaper, or running to grab the container of wet wipes....or looking for the beloved "binkie" (a.k.a. the pacifier) that had somehow fallen out of his brother's mouth. Taz loved to help with diaper changes most of all and he was just fascinated with the Vaseline. He kept asking me - "what dat?" (in toddler talk) asking me what it was for. So during one diaper change I explained it to him. Ok -- fast forward to the sleep deprived morning. I fed Taz breakfast, threw in a load of laundry, did the dishes, fed the baby, changed the baby, put the baby in the swing, picked up all of the toys, fed the baby again, changed the baby again, etc. Before I knew it -- it was lunchtime. I fed Taz lunch, fed the baby, changed the baby's diaper and proceeded to rock him in hopes that he'd take a nap. At this point, I was completely exhausted! I put the baby in his little carrier seat thingy and said to Taz "hey sweetie, why don't you lay on the couch with mommy and take a nap?" Taz was tired....I could tell.....and thankfully he snuggled up next to me and went to sleep. Ahhhh peace and quiet.....perhaps I could grab a quick nap as well?

Well, I didn't realize just how tired I was because I did fall asleep......and woke up to a giant crop circle in the middle of the living room carpet and 2 children covered head to toe in Vaseline! Obviously Taz had woken up from the nap before I did....and he decided that his baby brother needed a diaper change. Apparently he had tipped the carrier over (thank heavens it wasn't that big or high off the floor!), and had somehow moved his baby brother out of it. Thus I awoke to see the baby laying on the floor next to his carrier thing -- his diaper had been taken off, and he was covered in Vaseline. Of course he was perfectly content -- he had his binkie in his mouth and was peeing straight up in the air while laying in a crop circle of Vaseline. Taz of course had decided to strip and go naked as well -- (apparently I missed the memo that it was "naked day") -- and he was covered head to toe in Vaseline. They were both literally covered head to toe in the stuff -- it was in their hair, etc......what he hadn't coated himself or his brother with, he had smeared into the carpet (thus the giant crop circle), all over the VCR and TV. The industrial size jar of Vaseline was completely empty! I'm sure you've all seen greased pigs at the county fair (or at least on TV).....well that's what my 2 children looked like, sitting in the middle of a Vaseline crop circle. Did I mention that we lived in an apartment and were renting at the time?!

Of course I flipped out -- first grabbing the baby to make sure he didn't have any Vaseline in his nose or mouth (amazingly he didn't). I then checked Taz.....and began to attempt to clean them up with a pile of wet wipes. I quickly realized that the only way to remove the slime from the Vaseline was to give them a bath. Ok for those who might not know it.....Vaseline is a petroleum type based product. It's slimy, it's greasy, and it does NOT wash off with just plain soap and water. I tried using baby shampoo in their hair, tried regular shampoo.....even dish soap and some laundry soap. The more I scrubbed and washed, the worse the greasy Vaseline was -- and it wouldn't wash out of their hair no matter what I tried. I took them both out of the tub and proceeded to call hubby at work. I was in tears and freaking out -- how in the world would I get this Vaseline washed off of them and out of their hair?! I was sobbing and so hysterical on the phone that all hubby could understand were the words "Vaseline", "baby", and "razor" (I was considering shaving their heads bald). He hung up the phone, quickly told his assistant manager that there was an emergency at home -- and left work.

When he walked in the door, there I sat holding two greasy soaking wet kids....just sobbing hysterically. He took the boys, gave them another bath and somehow miraculously got the Vaseline out of their hair & off of their bodies. Then after they were dried off and dressed, he looked at the crop circle and Vaseline mess. Hubby told me to relax -- he'd clean everything up. He went to the store, purchased a giant carpet cleaning machine and went to work cleaning the crop circle. How he managed to clean that greasy slime out of the carpet.....I will never know. But he did thanks to the assistance of "soggy" (a.k.a. the carpet cleaning machine). And that my dear friends is why we now own a carpet shampoo machine. By the way, for those considering having children.....I suggest the very first item you place on a baby registry is a carpet cleaning machine! Trust me, it will be the best investment of your life!

Fast forward to present day......a few other failed attempts at naps have shown me that the only way I'll ever nap is either: (1) once my children are fully grown and move out, or (2) if someone puts me into a coma, or (3) once I'm dead. Yep.....it's pretty much a given that I will remain sleep deprived until the day I die. Because I've discovered that it's just not a good idea for me to attempt to nap, even if the kids are napping.....my last attempt resulted in the kids waking up first (they were between the ages of 3 and 8 at the time), and finding my economy sized jars of finger paint. My 3 sweet little angels (we have 4 kids total, this happened before son #4 was born) painted themselves from head to toe and also painted the entire kitchen.....then proceeded to run laps around the inside of the house, chasing each other......leaving little rainbow colored footprints & handprints everywhere they went.....on the carpet, on the tile floor, all over the furniture, all over the kitchen appliances, etc -- thankfully it was washable paint....and I had "soggy" to help with cleaning up the mess.

Thus one of the many reasons why.....mommy no longer takes naps.....and also why I no longer buy industrial sized products. Hmmmm....and people wonder why I have gray hair and look so sleep deprived?

Medication, meltdowns, and mayhem

Meltdowns:

We've experienced more than our fair share of meltdowns.....some have been mild, where as others have been pretty severe. Some people can't seem to understand that when an Autistic child is in meltdown mode -- they can't always control their words and/or actions. I swear I'd love to slap the folks who say "if you discipline them more, they wouldn't do stuff like that!" More than once I've responded with....."Really moron? You really think that you can spank the Autism out of them?" -- seriously.....what idiots those people are! During a meltdown, the child isn't able to "think" -- they just react.....similar to when a wild animal is trapped into a corner. They react to whatever the trigger is that is causing them to feel anxiety, etc and they can't always just "flip a switch" to calm themselves.....at the time, all they want is to flee/escape by whatever means possible.

They may lash out at someone, usually whomever is the closest at the time.....it's nothing personal really, it's just the "luck of the draw".....if you're the person closest to them at the time a meltdown occurs, then you may become the target of their aggression. I've been the target on more than one occasion. If you've never witnessed a meltdown, consider yourself lucky......if you have, then you understand how scary they can be at times. Over the years I've been able to determine what some of the "triggers" are -- things that will automatically trigger a change and/or meltdown......once you discover what these triggers are, you can do your best to avoid them and/or help your child through desensitization. Desensitization is a process which can help to reduce the level of meltdown that will occur......sometimes it works, sometimes it doesn't. Some automatic triggers are:  change in routine, weather/season changes, time changes (you know that "spring ahead" & "fall back" time change stuff), a full moon, and growth spurts......oh yeah, we're learning just how much growth spurts and puberty can trigger issues.  Other triggers can be minor things like a fly buzzing around the room or certain smells.....especially for children who have hypersensitive senses (smell, hearing, touch, etc).....little things that we might not notice can cause them extreme anxiety and issues.

Mayhem:

When dealing with Autism, you always have to expect the unexpected. Just when you think you've got it all figured out.....life throws you a curve ball! Never assume you know everything --- and always be alert. Just because things appear to be going well at the moment, that doesn't always mean that something won't happen.....it's like the calm before the storm. It could be a tiny trigger like the wind blowing the wrong direction or something more obvious.....but it will happen when you least expect it and then "WHAM!".....chaos occurs! Thus most parents and caregivers always seem like they are never 100% relaxed, usually sleep deprived and always on edge....just sitting there waiting.....because they know that mayhem can strike at any moment.

There have been times during a meltdown when I've wished that the nearby gawkers would have jumped in to help out......like for example, the day of my mother's funeral when our son had a meltdown and ran from the funeral home. Of course if the gawkers have no clue what they are dealing with, then they can make a bad situation much worse. Although even just a tad bit of compassion and/or understanding can mean the world to the parent of a child with Autism. It's a shame that more people can't seem to "get it".....a simple outing to the grocery store can be a major production for the parent of a special needs child.

Medication:

I've briefly commented before about medication. Personally, I'm not a fan of medication....although I know it has helped some AI kids tremendously.....after what we went through, I have vowed to never put our son on medication again. Our son has been off of medication for 5 years now and will never go back to using it! Shortly after diagnosis our son was placed on medication....over the coarse of several years, doctors had tried a variety of different medications. Some caused him to become very aggressive, changed his appetite (he wouldn't eat), he wouldn't sleep, had numerous severe meltdowns daily, etc. and other medications resulted in him walking around like a zombie -- so lethargic, etc. almost like he was walking around in a fog.

The last medication caused problems with his heart.....it would make his heart race during "slow" times, like when he was sleeping or doing a calm quiet activity (like reading a book or watching TV) and then other times when he was active (like during P.E. class and recess) the medication would cause his heart to slow way down. It was at that point in time that my husband & I decided we were through with medications. We'd rather deal with whatever meltdowns and behavior issues that might occur vs putting his health at risk by continuing with medication. So we said goodbye to medication....

The difference was like night and day! The day our son stopped taking medications, it was as if someone flipped a switch in his brain......he started eating better, was sleeping through the night, his behavior improved (no more daily meltdowns), and most of all -- he was paying attention more in school and thriving academically. His first year of middle school, he had wonderful grades and was the only AI student in his grade level to make the Honor Roll for the year!

Things aren't perfect....there are still some issues and triggers that result in a mini meltdowns from time to time, but there have been so many improvements -- we feel like we're on the right track at this point. Now we're entering the unknown.....the age of puberty......

Thinking "outside of the box"

As I've mentioned before, one suggestion we received at the start of this journey was...."sometimes you have to think outside of the box". One thing we've learned along the way is that so many people try to cookie-cutter these kids into certain categories based on their splinter skills and/or development level.....while others automatically assume that if a child has Autism or some other disability, then they are automatically incapable of doing anything.....thus they give up on the child without even trying.

I know there are some children that are unable to do certain things due to their disability level, however I feel that it is wrong for a parent and/or teacher to just "give up" before they even try to start. I have lost count of the number of people I've heard say things like "oh, he'll never drive a car" or "he will never hold a job", or "he'll never....blah blah blah." -- how do they know that for certain? Do they have some magic crystal ball that allows them to look into the future? In my opinion, if you're going to do that -- then you might as well walk away now. As I said, I know some children may not be able to do those things due to disability level....however it's so important to not give up before you even get started.

In the beginning, my husband and I agreed that we wouldn't give up -- we would never say "Taz can't do (insert task here) because he has Autism" without at least allowing him to try first. If he tried and was unable to do whatever "it" was, then fine -- so be it, but at least we would know that we allowed him to try rather than just saying "he can't". We didn't want to put up walls or set limits -- in doing so, we would be telling not only him, but also everyone else -- that we'd given up -- that he was incapable of doing anything.....and we weren't ready to do that. Now we aren't living in some type of fantasy bubble -- we both know that there may be some things in life that he may not be able to do and/or certain things will be more of a challenge for him -- but no matter what, we will ALWAYS allow him to try.....because if we don't, then we have failed him as parents. Now, this leads me to the topic of this post:

"Thinking Outside Of The Box"

I've always believed that people can learn in 1 of 3 different ways:  (1) visually, (2) auditory, or (3) through "hands-on" learning. I am a visual learner -- I have to see things to better understand them. My husband is an auditory learner -- tell him something once and he understands it. I believe that Taz is a mixture of visual and "hands on".....of course he has an amazing photographic memory, thus in some ways the visual learning methods work for him (especially in regards to math), but for other tasks the hands on and/or visual learning works best.

I can't guarantee this will work for all Autistic children, but in Taz's case it did. We've discovered over the years if there is something that he likes, say Nascar for example....or a certain subject in school....then he seems to be able to sit still and stay focused for longer periods of time. Thus we've used that as a learning opportunity. As I mentioned before -- we decided to use his fixation of Nascar to help him to re-learn his numbers, colors, ABC letters, shapes, etc. and we've used Nascar in place of certain things for story problems in math. We've looked at other ways Nascar could be used as a learning tool as well.....

We had the same thought process when it came to dealing with his picky eating habits and gag reflex. We slowly yet repeatedly introduced certain foods and smells to him....in an attempt to reduce his picky eating, reduce the gag response, and also help to desensitize him to those things. He loved to be a helper -- especially in the kitchen. We had to explain that if he wanted to help, then he couldn't be gagging and vomiting all over the kitchen and food. (By the way, teaching your child things in the kitchen like how to cook, how to help with dishes, etc. are "life skills" that they will need to know once they are older). We also allowed him to help with writing out a grocery list and picking out a new food that he would like to try. During grocery shopping trips, I would have him look at the ad flyer to see what items were on sale, check items off of the shopping list, help sort through my coupon folder to see if I had a coupon for whatever the item was we were buying, put items into the shopping cart, etc.

Another "outside of the box" technique we tried.....planting a garden. I can not tell you how much this has helped! Yes he's still somewhat of a picky eater, but not as bad as he used to be....and his gag reflex is almost gone (once in a great while he will gag slightly, but no where near as bad as he did before). Not only did the garden help with those issues, but it also became another learning tool (there's that box again!). Planting the garden helped to teach him about science --- weather patterns, how plants grow, soil and water, etc. and also support the things that he was learning in school about the food pyramid, where certain foods come from, etc. So we had him help with planting seeds & plants, pulling weeds, picking vegetables, etc. We froze and canned a lot of foods, thus he was able to help with that process as well......yes at times he didn't want to help at all or would just dig in the dirt while the rest of us worked, but other times he'd run through the garden eagerly picking green beans and tomatoes. He loved to look at the seed catalog and help daddy pick out which seeds we would buy each year.

I still laugh when I think back to the first time he ate a raw green bean. We were all out working in the garden, Taz and his brothers were picking beans while hubby and I pulled weeds and picked other vegetables. All of a sudden I heard son #2 say "Eewww Taz, gross don't eat that -- it has dirt on it!" I looked up and saw Taz munching away on a green bean (picture Bugs Bunny munching on a carrot). Of course Taz ignored his brother, ate one bean and started in on the next. His brother tried to grab it away from him and once again said "gross it has dirt on it, don't eat that!" I looked at his brother and said "shhhh, leave him alone". Son #2 looked at me and said "but mom, it has dirt on it!" I motioned for him to come over to me, leaned down and said "honey a little dirt won't hurt him -- he's actually eating a bean, so hush up and let him do it!"

A year or so ago, Taz became fascinated with NASA and the whole space program.....yep you guessed it -- we decided to "think outside of the box" and that became another learning tool. We used his fascination with it to teach him about the space program, rockets, planets and the solar system, science, weather patterns, geography, etc. There are so many other ways to "think outside of the box" when working with an Autistic child. Some respond well to music, others respond well to writing lists or putting things into categories. Thus my best advice is:  find what works best for your child -- think about what they like/fixate over and then USE that to help them learn. Everything can be a learning opportunity -- whether it's teaching them about health (brushing their teeth, taking a bath, etc.), stranger danger, math, science, English, life skills (how to do laundry, balance the checkbook, etc) -- be creative......you never know what will or will not work unless you try!

Changes

Taz's time at LTC was a mixture of good and bad. He regained most of his verbal skills, and had FINALLY re-mastered potty training (yippee no more pull-up pants!).....however there were still numerous daily meltdowns, medication issues, eating issues, sleep issues, etc. We were dealing with things one day at a time.....and with the support of the staff at LTC, we were surviving.

When Taz began attending LTC, he was placed in Mrs. K's classroom for an "early childhood" (Head Start) type of program, then transitioned to Mrs. B's classroom for preschool/grade K type work. He was thriving, he was learning, he had friends....and his achievements helped to keep us motivated. LTC was a part of our family.....we were happy there.....and more importantly, Taz was accepted there. At LTC, Taz wasn't looked at as some type of "weirdo" nor treated like an outcast. LTC was our "safe place" -- unlike many of the places we went to in public (grocery store, restaurants, church) where we received strange looks and rude comments.

While Taz attended LTC, I had the opportunity to become more involved and taught parent workshops -- showing other parents how to use things at home to teach and work with their children the way the staff did at school. I used the skills and knowledge I had obtained to create things that helped Taz.....and my wonderful amazing husband used his skills to work with our son as well. He used his business contacts to obtain items we could have in our home (school desk, phonics charts, etc) and also to arrange a private "meet and greet" for our son to meet his hero -- Nascar driver Dale Jarrett (there was an autograph signing event at a local business). My husband was and still is so amazing -- he has moved heaven and earth to help our son, and has been my rock & support throughout this journey.

Things were going fairly well for our son at LTC and we were happy......what came next however resulted in a mixture of emotions. One day while visiting his classroom, I had a conversation with Taz's teacher. She spoke about how well he was doing, etc and said that it was time to consider the next transition. I guess the puzzled look on my face was enough to tell her that I had no clue what she meant by that. She said "we've done all we can for him here -- it's time to transition to public school." My heart skipped a beat! I asked what she meant -- transition as in placed into a special education program or what? She smiled and said "no, based on where he is at academically, I'd say he's ready to be placed into what we call the 'inclusion program' -- general education classes that include special needs children." WOW....was Taz really ready for this type of major transition?

And IEP meeting was held, everything was discussed.....and Taz transitioned to the local public school within our district. He was placed into a general education grade K classroom. It was obvious from day one that the teacher did NOT want an A.I. student in her classroom. She was very rude to our son, very impatient, and extremely difficult to work with. And her attitude and behavior projected onto the students -- they were afraid of Taz because of his meltdowns, and very unaccepting of him -- to them he was "weird" and different.....and he became a social outcast, struggling to make friends.

It was shortly after the class Halloween party that we demanded Taz be transferred into a different classroom. I remember it like it was yesterday. As I helped other parents set up the classroom for the party -- while the students were out at recess -- I realized just how unaccepted our son was. I was near the window with 2 other mothers and watched as my son wandered away from his aide and attempted to approach several classmates. You could tell by the look on his face that he desperately wanted to join them in play, but had no idea how to go about asking if he could do so. Each child that he approached would laugh and run off away from him, or shake their head no -- and you could tell by the gestures, etc that they were telling him "no, go away -- I don't want to play with you."

I stood at the window, watching as my son was turned away by one classmate after another.....shunned by his peers. At LTC he had so many friends, he was happy & loved to play. But here at the public school, he was alone.....aside from his aide, he had no friends -- no one to play with....no one that understood what it was like in his world. Although he wasn't able to express it in words, you could tell from the look on his face that he felt alone and sad. My heart just ached as I watched helplessly from the window as one child after another rejected him. I wanted to bang on the glass and scream "play with him -- PLEASE -- be his friend!" But instead I just stood there with tears welling up in my eyes. The other moms began to talk about their kids, and point out where their children were on the playground. My son approached the one woman's daughter and the little girl shook her head and ran off towards the swings. The other mom said "who is that kid?" while pointing towards my son. The first mom responded "oh that kid, my daughter said he's such a weirdo -- apparently he's a retard or something.....he has tantrums and does strange things. He shouldn't be in this type of class, he should be in the Special Ed room!" At that moment both of the women noticed that I was standing there -- they looked at me and asked "so which one is your child?"......with tears in my eyes, I simply mumbled "the weirdo".....they both just stood there. As I turned to walk away, I glared at them and said  -- "By the way, he isn't retarded he has Autism".....then I walked away quickly before they could see my tears.

Now, before everyone freaks out and starts sending me hate messages....let me clearly state, I do NOT consider my son to be retarded nor have I ever used the "R" word  -- I hate that word. I hate the way that people can be so cruel and use words like that to hurt others. I wanted to punch those other moms in the face for the way they spoke about my son.....but instead of hitting them with my fists, I hit them with my words. I left the classroom and went straight to the Principal's office. I explained to her that I felt my son was not being treated fairly by the teacher, and it was obvious that she did not want him in her classroom. I demanded that he be switched to a different class immediately. Of course we had to go through the "red tape" of another meeting.....but our son was switched to a different classroom.....the multi-age class. This classroom was a mixture of grade K and First Grade students, and was co-taught by 2 seasoned teachers. Of course the transition wasn't a smooth one, and the new teachers and I butted heads a few times....but eventually they figured out that I could become their best friend -- or their biggest nightmare. After a few struggles, they opted for the friend route.

I spoke to both of them about how the other students respond to my son and requested that I be allowed to visit the classroom and explain to the students about Autism......perhaps if it was explained in a way that they could understand, it would help them to understand my son. Both teachers loved the idea and after obtaining permission from the principal, I visited the classroom. The students were very well behaved and asked a million questions! After that visit, they seemed to adjust and become more accepting and understanding......slowly my son began to make friends. Whew, one transition battle down.....many more to go......

He's not a brat, he's my brother

I'd like to take this opportunity to talk about our other boys for a moment. Son #2 was born before Taz's Autism developed (before the big relocation for hubby's job). It saddens me a bit to think back to that time....Taz was so excited about having a new baby brother!

He was such a great big brother -- even though he was not quite 2 years old at the time. He used to give his little brother hugs & kisses, and was constantly by his side. He loved to be a helper, and aside from a few little things and a Vaseline crop circle incident (I'll tell you about that later).....he was an amazing big brother. I have a photo that hangs on our fridge.....it's of Taz snuggled up next to his baby brother while they both napped.....Taz's arm is wrapped lovingly around his little brother.....I love that photo! Sigh.....

Anyhow.....I've received many compliments over the years in regards to how our other children respond to Taz and/or how well they behave during IEP meetings, etc. At times it's difficult to refrain from giving the person a "well duh!" look or sarcastic response. Why can't people understand? This has been their life -- the other boys never saw how their brother was before the Autism developed (aside from son #2 who was too young at the time to remember what things were like prior to the Autism), thus this is all they know.....he is their big brother.

They accept him, they love him, and they understand what Autism is. The boys are so supportive and protective of their big brother......and for that, I am extremely thankful. I know this hasn't been easy for them.....they have had to deal with a lot at such young ages. Although things have been difficult at times, this journey (Autism) has helped them to be more sensitive towards others, more patient, and more accepting. I can't take credit for the way they are.....the credit goes to their big brother.

A few years ago, Son #2 was teased and bullied for befriending an AI student.....a little girl whom some of the bullies picked on. Son #2 took her under his wing, became her best friend and protector....and as a result, the bullies turned their attention towards him. But he stood his ground....and he protected his special friend. I remember asking him back then why he did what he did, and he said: "Mom, they were being so mean to her and it made her cry. I thought about how kids treat Taz and the way they tease him and make fun of him....it made me sad, and it made me angry. Why can't kids see people like her and Taz for who they are, and not for the Autism?" Oh what a great kid......I'm so proud of him, and he is wise beyond his years.

This year at the parent/teacher conferences both son #3 and son #4's teachers told me how amazed they were at the way the boys respond to the AI students in their classroom and school building. Both of them have assisted in helping AI students......whether it's been by volunteering to be their partner for some classroom project or by helping during a meltdown. They are the first to befriend these special students, sit by them at lunchtime, play with them at recess, etc. Of course I reminded both teachers -- yes of course they do things like that, their big brother is Autistic....they understand -- unlike some people, they actually get it. At that point the teachers both had a "light bulb moment" and said "oh yeah, that's right"......duh!

The Journey - Part 2

Although several of my friends know the real names of our children, for now I will just refer to them by their nicknames to protect their identity since I'm not certain as to how many "strangers" may read this and decide to follow the blog. I hope you all understand --- I'm just a tad bit OCD when it comes to being a protective parent. Also for those who may not realize it....this blog is about AUTISM and our journey with it, thus if you found this blog through some link and thought it was about something else, guess what it's not....so please feel free to move on. Anyhow, with that said, on to part 2 of the journey.....

Enrolling our son at LTC was by far the best thing we could have done! The staff are so well trained, experienced, supportive, & compassionate....I can not express just how much their support meant to me. At the time, I felt like my entire world had been turned upside down.....like I had just fallen off of a cliff and LTC became the "safety net" that caught me before I crashed into the jagged rocks of despair below. After going through the anger, guilt, depression, etc phases (I moved through them all rather quickly) -- I became determined to do all that I could to help our son. The only problem -- where to start? The staff at LTC helped to point me in the right direction -- sort of like handing someone a map and saying "ok, start here".

I jumped into this full force.....I was a mom on a mission, and nothing would stop me. I read everything I could get my hands on, contacted several "experts" and "professionals" -- you name it, I did it. We converted the den into an "at-home" classroom, I made PEC's cards, social stories, schedules, etc and even taught myself sign language. After a long conversation with one staff member at LTC, I realized that the best way to help our son was to "think outside of the box" -- figure out what type of things he was interested in, and use that to help him. I don't mean to sound like I'm bragging or saying "hey look what I did" -- I honestly feel like I could have done more if there were extra hours in each day.....and feel like I only did what I'm suppose to do as a mom. It's difficult for me to actually talk about the things I've done -- I feel a bit embarrassed and very humble. As I've told people in the past who've given me compliments and praise...."I'm a mom, it's my job to do these things." I'd rather have the spotlight shine on our son and all that he's accomplished rather than myself.

The first year was definitely a challenge...."Taz" has a stubborn streak a mile long and because of the medication he was on at the time (I'll rant about medication later), he would have numerous meltdowns each day.....some were worse than others. He went through what we now call the "poop Picasso" phase....digging treasures out of his diaper and painting the walls, toys, etc with it (yeah, it was pretty gross -- thankfully we don't have to deal with that issue any longer!). He has super sensitive hearing, and a heightened sense of smell....which led to the development of a horrible gag reflex & becoming an extremely picky eater. Remember that movie where the lady did projectile green vomit? Well "Taz" mastered that skill as well.....I swear, the first few years I cleaned up more bodily fluids than most seasoned Hazmat teams! I had to be extremely careful when taking Taz with me to the grocery store....I would basically sprint through the aisles, throwing items into the shopping cart as quickly as possible before some random scent could trigger the gag reflex.....resulting in hearing "clean up in aisle 3" over the loud speaker.

Anyhow, his teacher and classroom aides at LTC were wonderful.....they worked with him daily and by the end of the first year, he had regained some verbal skills. The second year at LTC led to even more improvement and mini milestones being reached. He was a HUGE fan of Nascar....he would stand in front of the TV and screech and clap while watching the races each Sunday. He had a few toy cars and would line them up and move them around in a circle like the cars on the race track. When I mentioned this "fixation" he had, his teacher suggested it was time to "think outside of the box" -- and that we use this as a teaching tool. So, after a little creativity on our parts, our son was able to re-learn his colors, numbers, etc via Nascar.

As his verbal skills re-developed, his fascination with Nascar grew. He knew the team owner's names, the sponsors on each car, and if the vehicle was a Chevy, Ford, or Dodge. He would stand in front of the TV and "cheer" for his favorite drivers.....#88 UPS Dale Jarrett (in his vocab it sounded more like "dawl jarro") and the legend -- #3 Dale Earnhardt the Intimidator (translation in Taz's vocab was "dawl eenhad da intadator"). Although he was able to say Nascar words....he hadn't regained the ability to say "mommy". Yes, in some ways I was jealous of the Nascar drivers....I laugh now thinking about it -- but at the time it was like a knife through my heart. I would say "Yes Taz, that's Dale -- now say MOMMY....say M-O-M-M-Y" to which he'd respond with a giggle and run off to play with his cars or some other toy.

Slowly the words came back to him.....ball, cup, his beloved Nascar, etc -- yet he still couldn't master "mommy". Towards the end of his second year at LTC, he put together his first sentence. I remember it like it was yesterday. We were standing outside waiting for the bus to arrive one morning, and as it approached he gave me his version of a hug and said "by mommy, I ride cool bus now". The tears were streaming down my face as the bus pulled up.....the driver opened the door and gave me a quizzical look....I smiled and nodded the best that I could to let her know things were ok. I waved to my son as the bus drove away, then fell to my knees at the end of the driveway and just began to sob. He finally said "mommy"!!!

Apparently I sat there crying for at least 10 minutes....because my husband walked out and asked what was wrong. I told him, and tears started to form in his eyes as he said "ok, come into the house and cry -- the neighbors are starting to stare out the window at you." I didn't care -- let them gawk, let them wonder if I had lost my mind -- our little boy had just given me the best gift in the world! It had been over two years since he uttered the word "mommy".....and not only had he said it, but he also re-said his first real sentence! After we got into the house, I quickly sent an email to his teacher to share the good news!

The Journey - part 1

I'm sure as time goes by, I'll go into more details about "the journey".....some memories are still too painful to put into words, so for now they will remain locked away in the corners of my heart. Looking back, it's as if I'm watching a movie in my mind.....watching as someone else goes through the hell and heartache that we did. Then I have to mentally "pinch" myself and say -- yes, that was our life...we really went through all of that. It seems like it was so long ago....the day we began this journey.

It's hard to put into words what it was like for those who've never experienced something like this.....it's sort of like driving on black ice.....no matter how careful you are, how many precautions you take....your vehicle still hits the ice and begins to spin out of control. No matter how tightly you grip the wheel -- you continue to spin.....helpless and scared  until you crash. But in this case, with Autism.....you hit the ice and just continue to spin.....and spin...and spin.... 

Watching our son regress after the duplicate immunizations was sort of like spinning out on black ice.....I was helpless and scared.....no matter what I did, I couldn't stop this -- and I was angry at the doctor for ignoring our concerns -- I knew that something was wrong, but he wouldn't listen. I used to wonder -- what if he would have listened -- would it have made any difference?  Yes, I was angry at the doctor for his "error"...I wanted him to pay for his "mistake", but I knew in my heart that nothing would change this -- nothing would fix it -- there was no cure. Trust me, that was a bitter pill to swallow. I was also angry at myself -- for being a new parent and trusting that the doctor knew more than I did -- perhaps if I would have stopped the nurse from taking him into the other room, this might not have happened. For a long time I blamed myself -- the guilt crushed my soul. 

The first year was nothing short of a nightmare.....our son went from being the sweet playful child we knew, to this wild out of control arm-flapping little creature. He no longer spoke, instead he just grunted and screamed.....and when he was really frustrated, he would hit, kick, bite and throw things. The sparkle in his eyes was gone -- instead there was a blank stare. I used to look at him and wonder "where did my little boy go?" We used to call him "Taz"....because he was like the Tasmanian Devil in those old cartoons.....just wildly spinning from room to room, leaving a path of destruction wherever he went.

Shortly after diagnosis, we received what I now consider a huge blessing.....I can't imagine where we would be now if things wouldn't have happened the way they did. There is a school in our area for special needs children. LTC has a long waiting list, but one therapist pulled a few strings and helped to get our son enrolled in their "Head Start" program. What happened after that is nothing short of a miracle. The staff at LTC were wonderful -- they taught our son sign language, used PEC cards as visual cues to help with re-developing his verbal skills, created schedules and all sorts of other things. They took me under their wings and taught me things that I could do and use at home to help our son. I made my own PEC cards and schedules.....I taught myself sign language....and we converted our den into a classroom.

There were still meltdowns (several times a day)....he would still hit, kick, bite, etc but at least we had a way to attempt to communicate.....and we were headed in the right direction. We had a support network through LTC, and we didn't feel quite so lost and alone.

More to follow.....

The day my world changed forever

Before I can share where we are at now, I must first share where we have been. I guess the best place to start is the beginning.....or what I like to call "D-Day" (no that doesn't stand for what you might think it does). For us, "D-Day" is the day we received the diagnosis of Autism.

In the beginning, everything was "normal" (for lack of a better word)......our son had no issues at birth, and was developing at age level and above prior to his 2-year old immunizations. I'll go into the details at a later point in time, but the short version of things (for now).....we had to re-locate for hubby's job. Prior to the big move, I took our son to the pediatrician for his check-up and 2 year old shots. I arranged to have his records sent to what would be the new pediatrician (yes I did my research prior to the move and had already set up an appointment with the new doctor).

After the move, I took our son in to the new doctor's office for his "new patient" visit. While there, the doctor and I began to discuss his immunizations. Apparently his former pediatrician failed to transfer his ENTIRE file/chart to the new doctor, thus according to the records they had -- our son hadn't received his immunizations. While the doctor and I argued about it, the nurse took our son into the other room and administered the 2-year immunizations to him. So.....he received those shots TWICE -- exactly one month after he had already received them from his previous pediatrician.

Shortly afterwards the new doctor's office realized their "error" (their words, not mine -- IMHO I think it was more than just an "oops, we goofed up" type of error). Anyhow, the new doctor assured me that duplicate immunizations given a month apart wouldn't hurt our son. Well, IMHO he was WRONG!!! Within a 6 month time frame after those duplicate shots, our son began to regress. During those 6 months, I expressed my concerns to the doctor MANY times but was either ignored or treated like an "overly worried new mom". The doctor said "oh this is typical 2 year old behavior" and "oh don't worry, he's just jealous of the new baby, he'll grow out of it." In my heart I knew that something was seriously wrong.....so I gave up trying to convince that idiot doctor and contacted another pediatrician.

Now I'm sure some of you are wondering just how bad the regression was. I'm talking a serious regression in development......prior to the doctor's "error", our son was age level and above in ALL areas of development. Walking, talking, in the process of potty training, etc. All of that came to a screaching halt -- and things went backwards quickly. Over a 6 month time frame he lost his potty training, ALL verbal skills, and so much more. I felt absolutely helpless at that time, and as if I were watching our son slip away a little at a time. He became this wild-eyed, non-verbal little ball of energy.....sort of like that little boy in the "Jungle Book" story.

It took a lot of phone calls, referrals, etc but we were able to get him in to a place to be evaluated.....that is the day we refer to as "D-Day".....the day that our worst fears were confirmed after several hours of testing & evaluation. At that time our son was almost 3 years old, yet he had regressed to an 11 month old status in development. Yes, you read that correctly --- he regressed to an 11 MONTH OLD status in development!

We sat there feeling just numb & completely overwhelmed as the professional told us "your son has Autism"......talk about having your world cave in....feeling like someone just punched you in the gut as hard as they could, knocking the wind out of you......yep, that's what I felt like. I remember sitting there, in complete shock.....the tears streaming down my face and thinking to myself "what now?" At the time, I knew very little about Autism.....most of what I did know came from the movie "Rain Man", which IMHO isn't an accurate description of what Autism is really like (although it is a good movie). After the shock went away, I jumped into "mom mode" -- I had to learn all that I could about Autism and figure out how to help our son.

And so, the journey began.......

Introductions.....

Welcome.....I guess my first post should be an introduction huh? Ok, where to start.....hmmm, well I'm a SAHM to a child with Autism. I'm new to this whole "blogging" thing.....

Many years ago I began a journal -- writing about our adventures with Autism. My plan was to turn my journal into a book....but somehow along the way, instead of finding the time to write things down -- most of it is still trapped within my brain, waiting for some "free time" to put it all on paper.

Those who know me will tell you, I always say "been there, done that, gonna write a book about it!" However, at the rate I'm going my "free time" (to actually sit down and write a book) is few & far between at the moment.....and at the rate things are going, I'll be in my 80's before I actually have time to sit down and write the actual book! As most folks know, when you are dealing with Autism, that "free time" stuff doesn't always happen.

I've shared many stories thus far with friends -- stories about our journey with Autism.....and at the urging of several of them (ya all know who you are)....I decided to take the plunge and begin a blog! I guess for now, this will be my "book".....

As I said, I'm very new to this whole blogging thing (some would say I'm a blog virgin - gasp!).....so please bear with me as I learn the ropes and design this thing. My plan/goal for this blog is to share our Autism journey with you.....perhaps provide tips, advice, info, etc for those who are also dealing with Autism. I'm sure along the way we will share some tears and laughter as well.....the life of Autism is like a roller coaster ride. There are ups and downs, good times and bad, laughter and tears.....with each experience you grow, you learn, and you discover just how strong you are. As time goes by, I will share stories from day one to present day.....so stay tuned!

OK well that's the intro......I hope you will enjoy following this blog and reading my posts. I will warn you right now -- I love to laugh and I can be a bit sarcastic at times. I'm also very outspoken and won't sugar-coat things like some folks do. If you have any questions please ask!