Medicine

Some autistic kids are just that. They are just autistic and nothing more. They can go through life without medication. They do well through routine,school, and therapies. Some other autistic people have other diagnoses that go along with it and they need further help. More intense therapies, more structured routine, more tests and medicine.

Zequal wasn’t fortunate in only needing routine and some therapies. Zeq has had many occupational therapies, so speach therapy, extensive behavioral therapy, routine, specialized classes, institution, and much more.

When it comes to medicine it takes a cocktail of them to keep him stable. Sometimes they work sometimes they dont. We have tried numerous different kinds, times of days, etc.

He takes medicines that his doctors tell me if I would take his nighttime medicine I would possibly sleep for 2/3 days and it doesnt even make him tired. It takes a team of doctors to decide when he needs to take them and how often. To make sure nothing interacts with them.

To give you an example of his medicine. His anti physcotic he takes. He takes an extremely high dosage that is also a 24 hr release. But it doesnt begin to cover 24 hours. His doctor needs him to take more but insurance companies do not think a child should need more. Have had to send stacks of documents to show why he does. His 24 hr dose lasts him on a good day around 5 hours. This medicine is used to keep his personalities at bay. So it is stragically timed to get the most useful time out of it.

He also takes medicine, for his anxiety, for his adhd, for his nerves. If he doesnt have 1 of these medicines he shakes, cries, screams, personalities come out even more.

Imagine the pharmacy being out of one of these for even just a day. Not all medicines are made to stay in your system. Imagine having a headache and cant get any tylenol how you think your head is going to explode. Now think of how Zequals head feels if he doesn’t have one of his.

We make jokes with the pharmacy that when it is time to refill the pharmacy percentage for the day is always up. We make jokes and laugh about it. Because if we dont laugh about it we would probably cry. Seeing all these pills everyday go into this little guys body. But no matter how I feel about these medicines, I know without them he wouldn’t be able to get out of bed. It makes me mad, cringe, sad all rolled into one. But I know it is what’s best and what is needed for him to be even a little bit stable.

Onward and upward

Institutions

I’m not going to come in and say I’m for or against institutions.. are they what’s right for our family. No. Do they work for other families?! That’s something I dont know.

But what i can tell you is what they are to us. I can tell you Zeqs story. A few years ago we were at a point that his doctor stepped in and said it’s time for him to go. We had reached the max dosage of his medicines, we went to our back up med and we hit the max dosage of that one. So we tried a new one… well it didnt whatsoever help it sent him into a downward spiral. So we went back to the other. Yes it helped it stabilized him enough that he wouldnt hurt himself. Then they drew up all the paperwork for him to go. I was heart broken, he didnt understand.

We packed up his bag and drove 2 hours away. He didnt understand and I felt like I had given up on him. I didn’t by any means. But to him I am sure it looked that way. He was placed in a hospital for 9 days. He got a 10 minute phone call a night. I couldnt understand him. He would be crying so much. But I kept telling him I loved him and I would see him soon. Every three days I could go see him for 1 hour. I never missed a visit. But imagine packing up some stuff to do and get him a happy meal driving 2 hours to get to see him for a brief moment in a small room with a table and two chairs. I took him a puzzle and brought a word search book. But we couldnt do a word search but he couldnt have a pencil. We would do our hour and then they would come take him away. He would cry and I just had to walk away.

Sending him to this place was supposed to be the best thing for him. It would help him. They had to take showers, eat certain foods, and talk to the people they loved for 10 mins a day. I do understand why he had to go. He was detoxed off all his meds in a controlled environment that was safe for him. It was to restart him basically.

But for a little boy who cant understand what’s going on and have no one that he knows or trust around. It is terrifying. It was the longest 9 days ever. But I cant imagine what it was like for him. I questioned myself every minute of every day. Did I do the right thing. Will he be ok.

Whether or not it was ok no one will ever know. Did it help at the time…. yes and no. Will I ever do it again?!? Absolutely not. I believe institutions are and can be good for some. But running an institution is just that. Not any two people are the same. Disabled or not. Putting an autistic child in an institution is never really a good thing in my opinion because I understand fully you cant cater to just one person. But autistic kids do not eat the same as all of us. They dont bathe or brush their teeth the same as you and I. Their routine is what they live by so by disrupting that aren’t we hurting them worse?

All institutions are basically the same when it comes to disabled. Its schedule you wake up.. make your bed, breakfast, single therapy, lunch, group therapy, dinner, shower, phone call, quiet time, lights out. You have to do that exact schedule there is no varying from it. Which is all good and well. But when you have lived your life in a different routine it is hard to make that any different. If you don’t participate you get a frown if you do participate you get a smiley. Those smileys are what gets you closer to going home. Zeq was set back 3 days by getting one frown. It discouraged him and made me wonder if I did the right thing again. Because once you sign them in you can not sign them out. If you want to remove them you have to go fill out paperwork and they will release them 3 days later. 3 days.. can you imagine thinking to yourself this isnt helping and I want my kid then getting there and them telling you come back in three days.

So again I say I’m not for or against institutions. One way or another. I think all kids need help. I just wish there were other opportunities than placing these kids places where they didnt think they were all alone. I believe that different diagnoses can benefit greatly from some facilities. I believe group therapies greatly help certain people. I believe workshops set up facilitate some kids. It is all about the person and how it helps. No two people are the same. So one path may help some as another path may help others.

It was an eye opening 9 days to say the least for me and I’m not sure about for him. To this day all he knows is that he doesnt ever want to go back. He doesnt know why he had to go in the first place. But I know in my heart I couldnt make him go back. Not because he was mistreated, or beaten. But because in my heart making an autistic child eat green beans, and drink juice when they dont like it, or having to shower when all they have ever done is bath is going to make them worse in the end. We all have limits and for disabled children their limits are a little different.

By all means this is just my experience and opinion about them.

Onward and upward