It’s easy to explain ADD, social anxiety, and depression to people. They understand, and sometimes even identify with the causes, treatments and such. When talking about my son, Super Samurai, that’s a different story.

As you guys know, I’m a stay at home single parent, and not to go into too much detail, do receive help from different agencies to make this household work. It’s part of the reason I dream big, and I’m extremely frugal. I’m not ashamed of it, because I do still work, when time permits. When dealing with Super Samurai, I have to put his time and needs first, even with him being 16. I have since had diagnoses of my other two of different things, as I listed above, so my life is around the crew.

I think, for my readers, and followers, Super Samurai deserves his story told in full, and maybe then people will understand my big plans, our family business, and why we just roll with it.

He was 1 1/2 when he had his first seizure. His tiny thumb began to twitch. Family and myself thought it was just lack of vitamins, and his pediatrician even didn’t think anything of it. I mean I was 18, and a young mom, what did I know? It wasn’t but six months later when everything changed. I remember it like it was yesterday. We were grocery shopping. My mom, my two little ones, and myself. Just a routine day in California. Just like that, a full on grand mal(full body seizure) in the shopping cart. It was like time stopped and everything was in slow motion. I remember running to get help for him, because this was 2000, not everyone had a cell phone. EMTs were there getting him to calm down, and got the seizure to stop, and asking questions, I answered as best as I could, because they were so foreign.

“how long has he had seizures?”
“Who’s his neurologist?”

Our lives were changed. It was constant changes to the simplest things. No more outside trips, due to being too hot. No more video games or any sort, or even flashy toys, tv, or anything. Long trips were gone. Even some family trips, like amusement parks or the zoo were out. He was diagnosed with epilepsy at the time, and we made changes to adjust. From that point on, our lives revolved around him illness. I think anyone who has a disabled child knows that aspect.

Once school came, we tried to let him go, but at this point, he was in a special needs class. His speech deteriorated to a 2 year old, due to his seizures, and from the first medicine he received, Dilantin, rotted his teeth, so he had a lot of his teeth pulled. He was taking in as much as he could, but the seizures even had a hold on his education. He was eventually home schooled. Even then, the seizures had a hold on everything. At this point he was on two medicines, and had a rectal medication if the seizures got too bad. It wasn’t until he was 9, almost 8 years later, we got a diagnosis. After the adjusting, fighting, passing up on things, adjusted medicines, and taking work to make sure someone was home, we got a name for it.

Rassmussen’s Encephalitis.

Yeah, say that 20 times fast. It explained the seizures, and at this point, paralysis on his right side, and the backwards of development. We even got a treatment plan for it. Hemispherectomy. In other words, brain surgery. I can’t speak for my ex, but anything to make it end, I was all for. From my perspective, I hated seeing him like this, to the point he couldn’t play outside because we were afraid if he had a seizure, he hit his head. How it was explained was it would end the seizures, he probably wouldn’t regain use of his right side, and there was a risk of being a vegetable from it. You could see in this little boy’s eyes. He wanted the seizures to end. He wanted the constant poking and testing to end. He was extremely miserable. After extreme debate, we relocated and the surgery was performed. We were all scared. Again, more big extreme change. 8 hours of surgery, re-learning basic things, and hoping that he wasn’t going to be too different afterwards.

It was done, and he was the same little man I remembered. The personally shined through. He took full advantage of the gourmet food in UCLA childrens hospital, and since one of the medicines brought on early puberty, I saw him take advantage of the nurses in the hospital. He celebrated his 10th birthday in the hospital. I remember it clearly. We didn’t know the nurses planned it out, but we didn’t have much to give to him but a DS since we were tight on money to drive back and forth, food, and still pay for bills at the house, but these nurses planned it out. Decorations, cake, and a huge monster truck. He was happy.

Since then, no seizures. Going on seven years. I’m so happy for him, and grateful they are gone. He had to have a second surgery, for his back. He developed scoliosis due to his disease. He has a pole and screws in his back. He has a leg brace, and hand brace, but he wears them proudly.

  Super Samurai Before Surgeries, Age 7     Super Samurai after surgeries today, age 16

As cheery as this post is, it’s still a rant of some sort. I told that background to people to understand why I’m home. He may not have seizures, but other things that couldn’t be changed or learned are my responsibility. He can’t button or tie his shoes. He can’t comprehend a lot of directions. He can cook somethings, with supervision. I have to be available to help him. It’s my job. Not because I’m mom, but within our budget, we can’t afford an aide to come in and help. One incident, just last year, he had a bad migraine(a side effect of the surgery. He still has seizures, but since that part of the brain is detached it’s a headache instead), and I had to pick him up. He was pale, and just couldn’t do it anymore. We were walking out of the school, and he had to use the bathroom. The passing period started, and the noise was so unbearable, he had an accident right there, and threw up in the bathroom. It was a rough day. I cleaned him up and we went home for him to rest.

As we were walking out, we got the weirdest looks, but I didn’t care. What pissed me off was the lack of consideration to make a way for us to walk with his bookbag.

This was the point of the post. The lack of understanding of being a disabled child and being a parent to a disabled child. It’s not collecting a check to sit at home. It doesn’t mean you talk to him like he’s stupid. Yeah, some words he may not understand, but hell, you tell me if you understand and know the complete English language.

Don’t worry I’ll wait.

I’m home for those calls. I’ve worked too. Had jobs in higher positions, and in my experience, jobs are understanding……to a point. Calling off once in a while is one thing. Asking for a certain schedule, and being able to leave when you need to, without explanation, adding days off for doctors visits for follow ups. This is not happening.

That we can go on vacations, but I have to consider his condition as well. Nothing too physical, or a lot of walking. Nothing water related(can’t swim), nothing too loud, hot or cold or anything too complicated. It slims down the options we have as a family. We all excepted that, we don’t care. Super Samurai is awesome. We have fun in our own way. He’s 16, and loves wrestling and basketball. He’s chilled out for the most part. He watches me cook because that what he wants to do. He wants to work in a restaurant.

Remember my dream of being an owner of a restaurant?

I want that, but it goes deeper than that. It’s for my kids. It’s something I can pass on to them. The income he will receive as an disabled adult isn’t enough to pay rent in most cases, so he’ll be with me or relatives for the rest of his life. It’s for him and I. I know he wants to work in a restaurant, but reality is he won’t be able to. The setting doesn’t have time to be patient or understanding to his needs……unless I own it. Financially, it will take care of him without me having to worry.

This post is to inform, that I have learned to roll with it. That my life to special needs kids isn’t easy, and I hope one day society is more considerate to that. That some of us who are home do struggle, you just don’t know it. That, for example, going for a bike ride, may never happen for him, and that’s ok with him, but breaks my heart for him. Bikes for him start off at 6,000 dollars. That driving probably won’t happen for him, due to his condition. That something as simple as washing clothes, isn’t something he fully understands. He wants to try, but didn’t understand one tablet goes into the washer, instead of half a bag.

I have to be home to be patient and understanding to it all. Not get mad but explain as best as I can to him how things work, and why to do things a certain way.

It’s all about the understanding. So before you assume my or any parent with a special needs child of any age being at home, that life is easy, or smooth sailing, maybe you should go by their home and see what life is like first. Then consider could you actually do it, because the parent in this club, for the most part, didn’t choose to be here, but are true parents, because they sacrifice anything and everything to may their kids happy. They adjust.

They roll with it. It’s common sense.

If you want to read the technical explanation of his disease, here’s the link:

http://www.ninds.nih.gov/disorders/rasmussen/rasmussen.htm

~CSM~