What Happened to My Normal Little Haygen Baby?

VACCINES AND AUTISM

There is a tremendous amount of controversy surrounding this subject. I can't say that vaccines causes children to have Autism but I do know how my baby acted and was before the MMR vaccine. (Remember this is my blog and these are ONLY my opinions and beliefs)

There are many who agree that vaccines causes autism while there are many more who disagree with vaccines causing autism. There are also many scientific studies that prove they don't cause it. There are many scientists who firmly believe that they do cause autism......and I could keep going on and on about who does and who don't but I'm looking at all of this from a parent's perspective.

Haygen was normal, there was nothing different about him than from my oldest son (who is 4 years older than Haygen) They played together, played hide n seek with each other. He met all the milestones on time and some before it was time. He could talk, walk, see, play and eat by his self, everything a normal toddler would do. NOTHING was different. I am positive that I did not miss any signs because there weren't any to miss. I could understand that I could've missed some signs, IF Haygen was my first baby, but he wasn't.

He did not get his MMR at 18 months because we were in the process of moving, so I waited until he was 19 months. Almost, immediately I knew something was wrong but in 2008, I didn't watch or read the news and I had no idea of the controversy between autism and vaccines. That never once crossed my mind that the vaccine did something to him. I was watching him play and I watched him fall, he didn't trip or anything like that, he just fell limp. It looked like how you would hold a dish rag up and let it go, it was weird because I seen his eyes and they were rolled back in his head. I was scared to death and didn't understand.

I picked him up, grabbed the diaper bag that I kept by the door, got in the vehicle and just drove. I knew something serious was happening so I didn't even bother stopping at local hospitals.........I just kept driving until I got to Arkansas Children's Hospital (ACH).  We had been there for hours waiting and finally were called back BUT Haygen was playing and acting like a normal toddler would, so they were going to discharge him (we were still in the ER had not been admitted at this time) BUT when I was signing the discharge papers it happened again. He fell just like he did before we got there but this time the doctor SEEN him. We were sent directly to neurology and Haygen was immediately hooked up to the video EEG. You should've seen the seizure activity that was going on, I just cried and cried. This was the beginning of our 1st and longest hospital stay. It was 4 months.

During this time, he stayed hooked up to the video EEG for 3 1/2 months out of the 4.  He was having 20-100 seizures PER DAY :( And during this hospital stay he lost his ability to walk, talk, sit up, crawl and even hold his head up. He had lost all of his motor skills. I was a complete wreck and I pretty much hated the world then. I kept asking "What did I do wrong?" "What has Haygen done to deserve this or what did I do to cause this much pain on Haygen?"  It is tough.

I did eventually pull myself together while we were there. I remember there were so many teams of different doctors in and out of our rooms because BELIEVE ME there wasn't nothing that they did not test for.......NOTHING. Over a year after the seizures started, I was told he would never walk or see again.  You can read more about this here at The Beginning of Our Journey and at 2009 The Year of Total Darkness LeBonheur Children's Hospital also confirmed that Haygen would never walk or see again. After 2 years and 2 months of NON-STOP seizing everyday, his seizures completely stopped. You can read more about that here at Our New Beginning

Everything has been ruled out except the vaccines, and it never would have crossed my mind if that doctor had not asked me for Haygen's "original" shot records and told me "I can't rule it out and I can't stay that it is"

Haygen has been tested for Rett's Syndrome, Angelman Syndrome, Lennox Gastaut Syndrome and many genetics tests have been done by different hospitals. They have not diagnosed Haygen with anything yet, maybe they just don't know or maybe its because they know the vaccines caused it and just don't want to admit it. We will never know and that's ok if we don't because he's already beat the odds that were stacked up against him.   He stopped seizing, he started walking and seeing again and finally in 2012 his feeding tube was removed. After 6 years of testing all they can tell me is that he has characteristics of everything and although his autism characteristics are more visible than anything, they have not diagnosed him as autistic.

So you can see why I think the vaccines played a part in this, I mean even the doctors are all sitting around puzzled. They can't figure out what's wrong or what happened to him and they can't figure out why his seizures suddenly stopped. Even though I believed they played a part in this, I did continue with his vaccinations.  It was a tough decision but I know it was the best one. I will write about the reason why I chose to keep vaccinating later on. So for now I do believe they played some involvement but not totally to blame. I am just happy I still have my Haygen Baby because there was a time when I (even the doctors) didn't think he would make it to the age of 4. He will soon be 8 and I couldn't be any happier.

Autism and A Life of Isolation

First, I would like to apologize for the long break. It has literally been one thing after another. The week of Thanksgiving is when it had got very hectic, I had to make a very hard decision of whether to medicate or not medicate Haygen. He had not been on any medicine since April of 2010 but I had to do something because I was very concerned with his aggression. I decided to medicate him and this is all I have to say about it....BEST DECISION I'VE EVER MADE!! Medication isn't for all children or parents of children with autism but it was right for Haygen. He has progressed SO much since he's been on them. I will write another blog about the medicine very soon.

Besides dealing with the side effects of Haygen's medicine along with my health problems, ISOLATION is still the hardest part of this autism journey. It doesn't get any easier to deal with especially during the holidays because we even spend those by ourselves. When you go from "Being the life of the Party" to "No longer being at the Party", it takes an emotional toll on you. I know I probably make our lives look like there's so much fun and excitement in them (on social media) and it TRULY is but its also JUST THE 3 OF US 24/7 literally. When we are at baseball games, 95% of the time me and Haygen are off to the side by ourselves or in the vehicle watching Zan play. The medicine has helped tremendously with his meltdowns in public, Praise The Lord.

I know life gets busy and everyone has families and responsibilities but never in a million years did I ever think certain people would turn their backs on us. I live 30 to 45 mins (at the most) away from family and friends that I grew up with my entire life which isn't far away, so I guess that's why its so hard to comprehend. I don't know if everyone thinks I should load up my kids and go there to visit (which is an absolute NIGHTMARE because of the fact that my youngest child is autistic) or if its because I have nothing to offer them anymore. I just don't understand and never will. Explaining all this to others, especially family is exhausting, frustrating and I shouldn't have to when it comes to family. If you can't count on family, who can you count on? No one

Social media is too much for me sometimes because its a reminder of all the things that Zan is missing out on. I would love to spend more time with him to go and do normal things but with no support system it will never happen. My family believes its as easy finding a babysitter for my autistic child as it is finding one for a normal child. WRONG!!! After 6 years of explaining autism, begging and pleading you get to the point where you just have to give up on people.

Last week, everything was put into perspective very quick, I had to have a heart cath because the doctor suspected blockage in my heart since my echo, ekg were both abnormal along with my chronic high blood pressure. A friend of mine (who I met 6 years ago while Haygen was in the hospital in 2008) drove 2 hours from where she lives to keep both of my boys just so I could go and have the procedure done while her daughter met me at the hospital to drive me back home. I had drove myself that morning and I had to have a driver plus the hospital was also 2 hours away from my house. My dad and stepmom offered to watch the boys but they live just as far away plus my dad wasn't even at home. He was actually out of town his self but if I would've said yes they would've been here. That speaks volumes considering we just became part of each other's lives 3 years ago (very long story and beyond our control).

I know that heart cath's are performed everyday and is no big deal to some BUT when they take you into that operating room to begin prepping you before knocking you out lol (without hearing from the ONE person who is always suppose to be there for you no matter what plus a couple of others) its a huge deal to me. I was scared to death and alone. I do not wish and would not EVER wish this type of isolation on anyone. This is what I deal with everyday and its heartbreaking seeing the true colors of the people you love.

DING DING DING.......Round 1

Bad Boy vs Mean Moma

This has been the funniest part of our journey..........Ok maybe not the funniest but it sure has been FUN and it still is.

Haygen does not like clothes PERIOD. This would be ok if he was "House-Trained" YES I said house trained not potty trained :)  He will take all his clothes and diaper off even if it is a "poopy" diaper, he wants it off.  He will get his clothes and diaper off faster than I can turn around and will have his "poopy" diaper smeared EVERYWHERE (Ok this is not a fun part or even funny). I have read everything there is to find about autism and special needs children but I've never found anything or anyone that talks about this.  However, I did find where one reader asked a blogger this question "does your child smear poop?" and the answer was "NO"  I am not going to sugar coat anything because Bad Boy does "smear poop" and I was just about to lose my mind. It was a living hell :(  I knew I had to do something but I just didn't know what so....................This is how DING DING DING Round 1 got started..................

As I've said before we find humor in everything, so we found humor even in "Poop" :)  We started playing dress-up with Bad Boy. We started out with putting onesie's on him first then putting all kinds of clothes over that. It worked maybe a day and a half. Round 2........I bought some overalls and put those over the onesie plus all the other clothes...........Round 3..........Someone had gave us a bib because Haygen used to drool a lot. She had made the bib and we really liked it because you put your arms in like putting on a shirt.

I put the onesie plus all the clothes on including the overalls and then put the bib on him. This worked for a little while Praise The Lord!! Mean Moma was WINNING........but it was short-lived :(

Round 2568........Ok I had to come up with more ideas and it was getting harder and harder. Bad Boy is the Undisputed Undefeated Lightweight Champion. It's hard competing against him :) So I came up with the idea of bandanas. Me and Zan wear them sometimes so I had plenty of them. I would put his pants or shorts on over his onesie or without one then put the bandana on as his belt and tie it in a knot. The bandana lasted longer than the bib.

But once this stopped working I was at a loss. A friend of mine who was actually brave enough to watch the boys after school and during the summer awhile back found something online about pajamas and cutting the feet out. I was so proud that she found that and because she SURVIVED the summer with Bad Boy.

Round 36,895.........So, I started buying footed pajamas and they are hard to find in stores especially during the summer :) I found a great website that sells nothing but footed pajamas and they aren't expensive but the shipping costs are outrageous. I bought 4 pairs of pjs all at once and the shipping costs were more than all 4 pair of the pjs added together. The quality of the pajamas are great so its worth it. I would cut the feet out of new pajamas (that was a bummer) and then turn them around and put them on backwards. Whatever works right??

 

I have even cut some of the pajamas as shorts and short sleeves, but this can be tricky because of how the zipper is made and if it's a long zipper or a short zipper. I've actually messed up several pair because of the zipper. These are the ones he wears during the summer (in the picture below) because the ones I order from the website are thicker and they keep him warm during the winter, but I am running out of the "summer" pjs.  I will eventually have to start making a few of the "winter" pjs short sleeve and shorts or I may have to resort to something else altogether because of the quality of the "summer" ones that are already cut and the "winter" pjs that are just about worn out :( I'll probably just keep buying footed pjs and try to find another website that sells some thinner ones, but WHO KNOWS :)

 

YES he's wearing pink and purple LOL.

Our floors are very cold in the winter because we have all hardwood floors. Bad Boy won't even keep socks on no matter how hard I try to keep them on him or how many times I put them back on him. So, I have been brave enough to buy the footed pajamas and NOT cut the feet out of them and actually put them on him RIGHT. (after a year or longer of him wearing them backwards) However, I put a safety pin in them from the inside. I put it through the zipper (after I zip them up) and back through the pajamas and fasten it from the inside so he doesn't mess with it and so he doesn't unhook it and poke his self with it. Thankfully, this has worked so far. I always put a shirt on underneath so the pin doesn't touch him and so he won't know its there. :) He still wears them backwards when its not too cold.

Putting on the pajamas backwards with the feet cut out (even putting them on right with a safety pin) has been a LIFESAVER. It is still working. There have been some accidents but I realized it was because of the quality of a few pair of his pajamas. When they start wearing out (from washing them so many times a day it doesn't take long for certain ones to wear out) he has figured out that he can get his little hands up through the legs of the pjs and get his diaper off without even taking off the pjs. YES, he's that smart. I've also realized that certain ones that I've bought with a long zipper almost to feet of the pjs are the ones we have the most trouble with, but other than that.....WE GOT THIS. We have had a lot of fun with this because of the fact of how smart he is, he keeps outsmarting me and I know he's thinking "What else you got Mean Moma cause I will eventually figure it out!"

I'm not sure if he's figured out that he can't get them off or if he's just given up but...................Mean Moma has scored 1 point. Well, for now anyway because this round isn't over yet :)

SCORE

Bad Boy 1,528,489,993

Mean Moma 01

 

Groundhog Day.....

Our life is very much like the movie Groundhog Day. We do the same thing everyday BUT everyday is different because you never know what to expect. We do everything if at all possible to avoid meltdowns. We have routines. We have our morning Monday-Friday routine for getting ready for school and work. Our afternoon routines are the same Monday-Friday after work and school. The same goes for Saturday's and Sunday's, the routine is different from M-F but it is the same routine as the last weekend.

I've never been a stay at home person, me and Zan was always on the go before I had Haygen so this has been a huge adjustment for us. We spend a lot of days, nights and even holidays just the 3 of us together. Some people think we just don't want to be social but it really isn't that easy. When we do get away from the house, we pretty much have to load up the whole house to go somewhere, even the wheelchair. Even though Haygen can walk now, I still have to use the wheelchair because he doesn't understand commands and he's never still. He is like the "energizer bunny" his batteries never run down. During our stay in Memphis, he was tested for "Angelman Syndrome". Children with Angelman Syndrome are very happy and require little to no sleep and you've guessed it, he was negative. He did not have Angelman Syndrome!! On a good night, Haygen may sleep 1-2 hours a night and that's through out the whole night not all together.

Haygen has no fear and feels very little pain. He had cut his foot one day and I had no idea until I saw bloody little footprints throughout the house. He never cried or anything, and I had no idea how he cut it. I spend pretty much everyday trying to "Haygen Proof" our house but you really have to stay on your toes with him. He's very smart and he can figure out more than you'll ever know and that's because he can't communicate it to you. I bought our first house at the beginning of this journey but I never knew the path our lives were fixing to take. I love my house but I'll probably have to rebuild it from the ground up before we are even half way through this journey. It's a very good thing that I own our house because we are constantly "Haygen Proofing" it just to keep him safe. The way I look at it is that everything can be replaced except our Haygen Baby. We are always at our house except for when we are at work or school. Thank goodness for the never ending evolving of technology because our iPhones, iPad's, and everything else is what keeps us connected to the outside world. I always tell people if it doesn't happen on Facebook or Twitter then I don't know about it and they just laugh but I'm dead serious :)

Being a parent to a special needs child takes a lot from you. It affects you personally, physically and emotionally so being able to get a break from it all is very important. You need a break so that you can recharge and stay the good parent that you are and that's so hard to explain to someone on the outside. They think you are being selfish and that's so far from the truth. I've tried and tried to explain this to a person and it does no good. I don't ask anyone to keep my boys for me to go out and party or anything like that, its mostly when school is out and I have to work. I understand some people not wanting to keep Haygen because its a lot on someone.....Believe me I know :) But when you ask everyone that you know and beg and plead with them because you REALLY need to work and the answer is always NO, that's when it dawns on me that we really are in this world alone. Its a huge emotional roller coaster but when I find myself in the situation again, I always ask anyway thinking the answer may be yes but it never is :(  I haven't stopped asking for someone to watch them while I work but I have stopped asking for someone to watch them while I have time to recharge.

I did ask someone about a year ago if they would watch the boys one weekend a month so I could go and do things once a month without the boys and the answer was YES. Well, I'm still waiting for that to happen. I have FAITH that it will happen, ok maybe not for me but for somebody it will :) I can't stress that enough about how important a break is because the Groundhog Day is real in this life and it doesn't stop. That's all you have to look forward to, doing the same thing everyday. I guess the only thing that keeps me going is MUSIC. That's all I have (well besides my phone lol) that I enjoy and I can listen to it, sing it, scream it or whatever and wherever me and the boys are :) On the bright side of things through, I have been raising an 1 year old for the past 6 years (Haygen is 7 and on an 1 year old level) and that means I'm not getting older either :)

Just The 3 Of Us

When I say "we" or "us", I'm referring to Zan, Haygen and myself, it's always just the 3 of us. This includes the past posts as well as the future ones.

Being a mom takes a lot of hard work, being a single working mom is tough, being a single working mom to one very active sports player and one special needs child is challenging. You are pulled from every direction. You are the working mom during the day, the fun, crazy sports mom after work plus the therapist, nurse and caregiver in between all of that. There are days and nights that I cry myself to sleep, maybe from exhaustion or feeling like I've not done enough or perhaps just from guilt.  I feel absolutely guilty some days because I feel that Zan is missing out on lots of things during childhood. We used to be able to go to movies from time to time but now just leaving the house some days is an absolute nightmare.

Zan is the most loving, caring child I know with the biggest heart. He has amazed me through all of this probably more than Haygen. The way he interacts with Haygen is something you can't teach or show a child, it just comes natural. He did play every sport that the YMCA offered for a year or two, but I finally said "Baby, can you pick one sport that you love to play and just play that one?" I felt like a horrible mother asking him that but I had too. I was a complete train wreck.  He said "sure Moma" and he chose baseball. He has played every year since he was 5 and he will soon be 12, so you better believe that when baseball season is near it is his choice whether he plays or not and once he signs up, he has to finish the season because quitting is NOT an option. He is no Chipper Jones but to me he is better than Chipper. He plays with his heart and soul and baseball is the one thing that is "normal" in his childhood. I have missed a few practices and ballgames but not very many. Some of them, I'm there but me and Haygen are watching from the vehicle not because I don't want to get out, its just easier. In the parked vehicle (with the music on) in unfamiliar places is actually calming for Haygen, its sort of like a security place like home is to him. When he has a "meltdown" it could be 5 minutes or 2 hours or longer and its something we try to avoid especially in public. It's very easy for people looking in from the outside to say "All that child needs is discipline" and that used to bother me A LOT!!! But watching a child have a "meltdown" looks a lot like a spoiled little kid just having a tantrum. Seriously, some kids you would never know that they are autistic or a child with special needs just by looking. I will never forget the first day someone made me cry at Wal-Mart, we were looking at air filters of course Haygen was screaming, me and Zan were going on about our business because Haygen screaming is normal to us. This man stopped and said "Can you not control your child?"  this day I was very exhausted and Haygen could not sit up on his own then, he was sitting in the seat of the buggy and I was holding him up by having my arms under his and pushing the buggy by holding the back of the seat. Needless to say we didn't get any air filters. I picked Haygen up out of the buggy got Zan's hand and we left Wal-Mart. The saying "Don't judge others because you have no idea of the path they have been on or the path they are traveling" It's very TRUE.

Describing a meltdown is like a "System Overload" on your computer, say for instance you do things the same way everyday but one day you take a different route to work and all that new information (scenery, sounds etc) is coming back to you so fast that you can't slow it down long enough to process it, so your "computer" shuts down or crashes!!! That's how it feels to Haygen. His brain is the computer and all the information (sounds, smells, textures or just life itself) goes to his brain so fast that he doesn't know what to do with it. The "meltdowns" are his way of saying "STOP" and he needs all the new information given to him slowly and not all at once. Some meltdowns can be violate and some can be just screaming you never know.  I remember giving him a bath awhile back and as soon as I put him in the bathtub he started clawing me trying to get out of the water until eventually he pulled me into the bathtub with him. YES, he's that strong and I think he broke my thumb that day too. Haygen doesn't mean to be violate but things we don't even notice or pay attention to in our daily lives are scary for him. I had no idea what was happening or going on. I didn't know if it was the smell of the soap, the temperature of the water I just didn't know. Eventually, I realized the water was running that day I put him in the bathtub and now the water is ran before I even take him near the bathroom. He loves his baths and don't want to get out most of the time now. Everyday is a learning process not just for Haygen but for me and Zan as well.

This whole journey has changed our lives. We see the world differently. We don't live from day to day, we live from minute to minute. To us tomorrow is the "UNKNOWN" and we face it as it comes. We find humor in everything, we have a lot of fun. We focus on the POSITIVES and not on what we CAN"T do because you will definitely drown in this world if you don't focus on the positive things. People used to ask me "How can you be so happy all the time?" It's not easy by no means but I look at it this way "We didn't choose this life, it was GIVEN to us" so that makes it more special. Not only am I a better mother now, I am a better person over all. I make mistakes everyday but the key is to learn from them. I have found strength that I never knew existed. Patience. Ahh, I never knew someone could have this much patience. Out of all the learning though, I learn the most from my boys and at the end of the day, I realize we don't want to be "normal" because we have enough love, affection and are closer than probably most "normal" families.

Our New Beginning........

When we left Memphis, we left with good news about the test but we were still clueless as to what happened to the normal healthy active little Haygen. It was frustrating but on the other hand it was a relief because all the big tests were normal. We also starting weaning Haygen off the seizure meds and got the feeding tube. (I no longer had to put it through his nose anymore YAY) Since the surgery, when he pulls it out now, I have to put a new "micky" button in the hole in his little stomach and then fill the balloon up with water. NOT FUN but definitely better than the nose.

It had been a few weeks since we started lowering the dosages of his meds and something was different about him. I started noticing his seizures were lowering and he looked SO alert it was like WOW. One day I realized, Oh My Goodness he had had NO SEIZURES. There has never been a day without seizures since he started seizing in February 2008. I'm pretty sure my whole neighborhood heard me that day :) Watching your child or loved one seize non stop on a daily basis takes a tremendous toll on you especially cause there's nothing you can do but hold them, comfort them and love them. Haygen has been seizure free ever since that day.

Then one day I'm almost positive it was August 28, 2010, Haygen's nurse from his school called my office and asked me "Guess who just walked in my office by their self?" and I responded "I have no idea" me and his nurse talked a lot so this wasn't unusual for us. And she said "HAYGEN" yea I think I fell out of my chair pretty sure I did. Haygen walking into her office never crossed my mind because he wasn't showing any signs of really trying to walk. He was crawling some but not pulling up a lot where you would think he was trying too anyway. I was completely shocked. Crying, laughing, thanking God and everything and everyone. So after work this is what I saw..........I didn't know whether to laugh, cry or what cause he still amazes me. :) This was the VERY first time I seen him walk. I went in the school with the video on :)

 

 

Haygen never slowed down either. He was soon running and jumping and to this day in December 2013, he still out runs me. He's a fast little thing too. When we went back to Memphis for our follow-up, the neurologist said 5 words to me MAYBE. He sat there for an hour and half just watching Haygen, he was amazed. He was watching him play, walk, jump, and throw toys. He said "I don't know why he's getting better." I just turned to him and said "I do and its PRAYERS, Lots of answered prayers!!" We have seen some of the best doctors there is and I'm here to tell you God is the "REAL" doctor. Two of the most amazing children's hospitals said he would never walk again. They did all the tests and there was all different types of doctor at each hospitals PLUS the tests were sent to most of the states around the US. There was nothing in the tests indicating he would ever be able too.

Those same 2 children's hospitals also said he wouldn't be able to see again and the neurologist did say at the follow-up appointment in Memphis that Haygen could see something but wasn't sure what or how much he was seeing. Totally different from the blind diagnosis and saying that he can't tell if the light is on or off. I had also forgot to mention that a friend of mine's daughter was having seizures and she had tubes put in her ears and her seizures stopped. I had never heard anything connecting tubes with seizures but I mentioned it to the doctors in Memphis the week we were there and they said that yes sometimes it does help because it takes pressure off of the brain and given Haygen's history with ear infections they also scheduled the appointment at ACH for that as well. We have and will try anything to see if it helps.

So with all this going on there's no way to say that the tubes in his ears stopped his seizures, or getting him completely off all medicine or just getting the feeding tube was the reason he was getting better other than GOD IS IN CONTROL. You just have to give it ALL to him.

Even in darkness, there's ALWAYS........HOPE

"If you've never been through anything, you can't help anyone."  That quote is the reason for my blog, I hope I can help at least one person through this and let them know they are not alone. Even in the darkest hour there is always HOPE!! NEVER GIVE UP!!!