“Normal”

I keep wishing for people who do not spend every day with my children to tell me that what they do is “normal”.

Let me be very very plain about this, I would love to have “normal” kids, with “normal” meltdowns and “normal” things, but I don’t. I am okay with it, and I’m asking everyone else to be okay with it too. We have things that are totally age appropriate and developmentally appropriate, but what people that live outside of these 4 walls don’t see is all of the work we put in as a family to appear “normal”.

Daily we have to talk about our schedule for at least 30 minutes before we can leave the house, sometimes longer, and I am to the point of reinstating a visual schedule for both boys, maybe that will happen today actually. If I refuse to talk about it for the 7ooth time we melt down, hard.

We get stuck talking about the same thing for days, and sometimes even weeks. When the subject is changed, we melt down. If things are asked in different ways, or told in different ways, we melt down. If one of the kids tells the other what they are saying is wrong, without using a specific phrase, we melt down. It’s a circle that sucks to get stuck on.

We have a very specific way of starting the day, if that is interrupted we melt down. If we are going to be doing something special or out of the ordinary there are days of prep involved in making it a success. If it is to a place we’ve been we talk about when we are going, we look on calendars, we count days, we tell every person we come in contact with. If it is a new place we have a million questions and if left unanswered we have issues.

We stutter, and spin, and flap and hum. We fight sleep and have night terrors. We have seizures and tummy issues and are hungry all of the time. We try new foods and gag hard every time. We do better when we have our kindles and headphones on. We can’t move to a certain task until we have finished reading an entire series of books. We HAVE to brush our teeth after every meal, we have to eat every meal and snack at just about the same time every day.

We lose our words when we are over stimulated, we sleep hard after seizures, we have to be in charge of everything. We try to play with friends and end up alone just about every time because we can’t figure out how to play tag, or why they aren’t into the overly complicated adventure game we’ve concocted.

More than anything we try every day. We try to just go with the flow and it’s hard for us. We try to find our words, we try. And sometimes we have ugly responses, and they aren’t always intentional, and mommy and daddy know when they are and when they aren’t. But we still get the looks and the eye rolls and the stares.

I see where other almost 6 year olds and almost 3 year olds are, and I know where my boys are. I know where we excel and where we lack. But normal, we are not. AND I AM OKAY WITH IT.

So please, stop telling me things that worry me are just normal and they will out grow it.

 

 

 

 

More worry. Always with the damn worry.

We had Max’s Psychology evaluation with our local regional center. The Psychologist was the same initial psychologist that did not diagnose Leo with Autism. ( we went back a month later and he was diagnosed within minutes of a different Psychologist meeting him) So I have my reservations with his decision.

We also had his evaluation with our school district. They blew through it. Parts of it made me uncomfortable because they assumed he knew things without testing him. Is he smart, very much so. But there are problems, concerns, issues. And I can’t figure out how to help him right now.

His speech is slipping backward more in the past week. He is losing more initial letter sounds, he has “language” right now but most of it is not recognizable to most people. His current speech teacher said this week with his lack of words she was able to hear a very pronounced lisp and is wondering how much of that is effecting the rest of his attempted language.

The Psychologist through the regional center said he was going to write his report that his speech delay is still a huge concern and we would not lose funding for speech services. Then last week our liaison tells me that they never have funding for children over 3 for speech services. So we lose his regional center help in a month. We have an IEP meeting with the school district next month, but if they don’t find enough of a delay he will not be given services through the school district either. So there is a chance that my child, who still cannot communicate and has an overload of sensory issues will lose all services next month and I don’t know how to help him.

There are so many things with him that are worrying me.

His hands are clenched in fists almost all of the time, he can’t speak in understandable sentences, he can’t answer simple questions a better part of the time, he melts down when he gets frustrated, If a bath towel touches him he screams, washing his hair is like a wrestling match, he can’t handle that water on his head.

Every interaction with him ends up like a speech session. Trying to get him to slow down and very intentionally make his sounds. But putting them together it doesn’t happen. It’s like his mouth literally will not form certain letter sounds. I watch him fight and fight and then get frustrated and shut down. When he shuts down, it’s over. I can’t get him to even try again.

Trying to get Providers and Insurance to acknowledge his sensory processing issues is hard. And his sensory issues are so outside my scope of knowledge. Even with reading and listening to his current O.T. and trying all kinds of things I can’t get a grasp of his problems. I can tell you what sets him off, what he can’t handle. I can tell you how I try to make him comfortable with any of these things, but it doesn’t last long or at all and I feel defeated.

I want him to be able to talk to me, to tell me that something hurts or that he just doesn’t like it. I just want to be able to communicate with my little guy, and I can’t. And I don’t know how and right now my spirit is pretty squished.

So pray please, that we get some help so that I can continue to learn to help him learn and grown.