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.

I get KNOCKED down........

Tonight was gonna be a special night, Zan was singing with his choir. I was looking SO forward to listening to him sing.

Let me back up until yesterday morning, I found out that Zan had a choir concert and realized we had to go shopping. So after work the 3 of us head out to the stores. Zan needed new everything cause he had outgrown all of is "dress" clothes. He tried on a lot of stuff but we had fun of course even got pics to prove it.

BAHAHA look at Haygen in the mirror :)

We decided on those khaki's plus the red shirt. Then all we needed was a belt and shoes then he would be set. Zan was so excited. 

So after work, I rush home got the boys dressed and we were out the door again. We get to the concert (yes a little late) people were already parked by the door and we had to park behind the building and that's cool. We get out and I get Haygen's wheelchair, put him in it and now we are going to the front door where we are suppose to enter. I didn't see any sidewalks or anywhere to push the wheelchair except through the grass and I had asked several people who were also walking and to my surprise there was no answers. I eventually found a sidewalk but when I get to the door there are 3 steps to go up. I was at a loss. So I turned Haygen's wheelchair around and proceeded to pull it up the steps while people were watching including one man. Not once did anyone offer help, not once. 

I was kind of tired by the time I actually walked through the door but it wasn't no big deal in fact, I wouldn't know how to feel if it were as simple as jumping in a vehicle and getting there. The room was very quiet and of course Mr Haygen was screaming and jumping up and down in his wheelchair so what does everyone do, turn and STARE. This probably wouldn't have bothered me if I wasn't so tired. I then push Haygen outside for a second to get him to quieten down a little bit and he did. We get back inside, Haygen gets louder. Of course this time, I'm bawling and the tears wouldn't stop and me and Haygen ended up in the vehicle before I ever got to hear ONE song that Zan sang with his choir. 

The people staring at us weren't bothering me, it was the way they WERE staring. I don't know why but it does hurt especially when you already feel like an outsider to begin with. Maybe it's because I treat people the way I want to be treated and that's not how the world really works or at least not tonight it didn't. I know for a fact that I would've offered help to someone who was trying to pull a wheelchair up some steps. Most likely 99% of the time that person won't let you help but it's letting them know that you are there for them. 

Right now I am hurt, I'm knocked down. YES I will get back up stronger than I was but the only person truly suffering tonight is Zan. I was not able to watch him sing on his "big" night as he called it. I do not have anyone who will watch Haygen for me so that I can participate in (Non-Haygen) activities. Not even family members who live close and have the time. I thank God everyday for allowing Zan to be the child he is because he does understand that it's really just the 3 of us. And my ZANMAN looked so handsome tonight.

2009 The Year of Total Darkness

As I said in my last post, 2008 was a tough year for us but it sure didn't prepare us for the struggle we were about to face in 2009.  You know that saying "OMGOSH can things get any worse?!?" The answer is always YES, YES THEY CAN!!! So if you make it through whatever it was that made you ask that question, just thank God for giving you strength to get you through it. I have changed a lot since February 23, 2008, and I've found out more about myself since then than I have my all life. I will elaborate more on that a little later. 

 

Haygen had continued having 20-100 seizures per day and at the last doctors appointment he was scheduled for surgery to have a VNS implanted near his heart. The surgery was scheduled for February 25, 2009, almost a year to the day that all of this began. A VNS (Vagus nerve stimulation) is a technique used to treat epilepsy. It involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve.  This little device is a Godsend!! It truly is and technology is absolutely amazing. It didn't completely stop the seizures however, it did lower the number of the seizures he was having everyday. But there were some days that it didn't help at all.  It takes a while and its more like trial and error to get the settings of the VNS to where they need to be.

 

The VNS was helping Haygen with his seizures but he was still on the meds and by this time the dosage had increased several times since the beginning. He was still having all types of seizures not just one certain type.  There was still lots of ER trips, lots of doctors appointments and lots of sleepless nights. My ZanMan was doing good in school considering all of this and he was enjoying every sport that the YMCA offered and Haygen was right there at every practice and every game (unless we were in the hospital). Zan loves Haygen more than life itself and you can clearly see it in his actions. When it comes to Haygen, he is like the Big Bad Wolf.  He will protect him and make sure he is ok.  At his Christmas school program, one of his classmates saw Haygen and asked Zan "Why don't your brother just die??" when they were behind stage. I didn't know about it until he told me when we got in the vehicle. I could barely understand him because he was crying so hard.  He said, "Moma, they just don't love Haygen like we do and they don't understand that he has feelings too!!" My heart was hurting because at that moment Zan saw the world in a total different light. The next morning I called the school (not to fuss or get anyone in trouble) to tell them what had happened so that maybe they could talk to Zan's classmate and explain to them about his little brother. Its wasn't the child's fault at all they just probably had never been around any special needs children. There's many children and adults that have never been around those with disabilities or special needs and that's why I chose to write this blog to maybe help educate others about them. After I spoke with the school, Zan's teacher asked if I would mind bringing Haygen to Zan's class so that everyone could meet him and see how precious and special he is to me and Zan.  Of course I said yes and the whole class just loved him. Zan has never had anyone else to say anything like that to him again. In fact, I think he's had several to ask where Haygen was if he wasn't with me at the school!! :)  

 

A couple of months had passed since the surgery for the VNS and there had been a little improvement with the seizures but he continued having them everyday. He was not getting any better with the medicines that he was on, so his neurologist wanted to put him in the hospital for a week if not longer.  He wanted to run more tests and observe him more closely because by this time Haygen could no longer walk, talk, sit up, hold his head up, hold his bottle or anything. It was like he had literally became a little vegetable overnight. The doctor scheduled it for the week of July 20-24, 2009 but wanted me to come in to his office a week or maybe 2 weeks before so we could discuss the tests and what they were going to be looking for during that week.

We went to his office the week before and he told me he would not be there when Haygen was going to have all the tests ran. He was moving to Texas because he took a position there to help with children but would be back in a year. He said I had a great doctor that was taking his place and that he had already briefed him about Haygen. I didn't want him to leave but I understood.  He was going to help with some program that Texas has for children and they needed doctors that were willing to come work for free and be involved with research (I can't remember all the details) and I truly admired Haygen's doctor and not just because of that but because he truly cared for each of his patients. To him Haygen was a "mystery" baby and he hated to leave Arkansas Children's Hospital but he felt like this was something he needed to do. I feel like he would have never stopped searching for the answers for Haygen. We sure do miss him cause he was the BEST!!

We got settled in at the hospital and a few hours later we met the new neurologist for the first time, he was from Texas.  It was odd that our doctor left for Texas and was replaced by a doctor from Texas.  He seemed nice. He explained to me again about all the tests and said hopefully we would have answers before we left. A few of the tests results had a came back within a couple of days and of course they were normal but on the 3rd day the doctor came in and told me that Haygen had Lennox Gastaut Syndrome or LGS. LGS is a difficult to treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems.

Then on the 5th day the doctor said that Haygen was never going to walk again and someone would be there later to measure him for a wheelchair. I started crying but I wasn't hysterical because deep down I had known for awhile that he would eventually be put in a wheelchair and I had already accepted that but it was just that everything was happening so fast.  They weren't quite finished measuring him before someone came from optometry to take him down for his vision tests. As we finished with the tests, the doctor said "he can not tell if the light is on or off" and I just looked at him and he calmly said "Your baby is blind!!" I don't remember exactly what I did at that moment but I remember him leaving the room and it was a little while before he came back.  When he finally came back he brought another specialist with him that ran the tests again and told me the same thing as he had but added that Haygen would NEVER see again. I do believe I had everyone that was in that hospital at that moment crying, even the doctors. It was BAD or I guess I should say that I was bad. My baby being in a wheelchair, I had already accepted but the thought of him being in a wheelchair AND blind was way too much for me to handle in ONE DAY.

After things had settled down a bit, the doctor came in and said that he was releasing Haygen that day because every test that could be ran has been done except one and he was scheduled for it right then.  He said he would have all the discharge papers ready for me to sign when he was finished with the test.  I asked what it was for and he said "His hearing"  I said NO WAY ABSOLUTELY NOT!! You are not going to test his hearing and then tell me he can't hear NO WAY NO SIR!! You can schedule that test for later. We were discharged that evening and Haygen did not have his hearing tested before we left.  I know I couldn't have handled it if they had told me that my baby was deaf on top of everything else that day.

After we were home, I think that was the darkest time of my life, knowing Haygen would never walk again, never see again and not to mention the horrible seizures he was having 24/7 was almost to much for me to handle. It was a NIGHTMARE that never ended and couldn't wake up from but I also had to remain strong for Zan.  I never told him that his Bubba couldn't see, I just said that his Bubba was sick and left it at that.

There were many more trips to the ER after that hospital stay mainly because of the seizures and the severity of them. But then he began not being able to use the bathroom, his diapers were always dry after all day and during the night. This was the beginning of our transition to Memphis.....................