I love my son so much. It’s what gives me the ability to be patient and understanding with him. Raising a child with autism has many challenges. I take them on, day to day, and handle them to the best of my ability. Some are easy to deal with, others are not. Now that my son is a teenager, some of them seem to be getting harder.
My son has always had a stubborn streak. In the past, I have been able to manage this. He was easily redirected to something else. Now, he isn’t. He gets his mind set on wanting to do something, or get something, and there is no redirecting him. We’ve been having a really hard time at night because of this. He doesn’t want to go to bed when it is time. He wants to be on the computer, or he wants the computer turned off. He won’t go to bed if the computer is on, even though we are using it. My son has always been OCD, but it was always minor. It didn’t interfere with day to day life. Now it does. His OCD has gotten worse. One example is walking. In the past, he would walk around a different surface type, and avoid stepping on things. It wasn’t a big deal, but could be challenging when walking across a parking lot. Now, he has to step on everything. Any little difference in the surface, any object on the ground. His entire focus is on the ground. This is dangerous when we are walking in a parking lot. It’s also lead to him walking into people, or things.
I blame this on teenage hormones. Becoming a teenager isn’t just a matter of my child getting older. It means things have changed internally. Chemical changes. Every parent of a teenager will tell you that their child completely changed when they became a teenager. I had hoped that I wouldn’t have to deal with this with my son. Of course, that was wishful thinking. The teenage years are officially here, and I feel overwhelmed. The school has even noticed differences. I have an IEP meeting scheduled the last week of school. I am going to talk to them about a behaviour plan. We haven’t needed one before, but I think it is time now.
We’ll get through this, I know. It’s just going to take time and patience. Something I’ve gotten good with.
Remember the post I did about my son’s communication device being broken at school? The device was broken at the end of March. We sent it to Words+ to be fixed. My husband called them and got the address to send it to, and an estimate on what it will cost to repair it. He packed it up and shipped it out. We waited for a phone call that never came. You would think that they would call us when they received it. No. It just sat on a desk. It was looked at, but that was it.
My husband ended up calling to find out what was going on. They said only the screen needed to be replaced, and they needed payment before fixing it. The cost was $350. We paid it. It hurt us, but it hurt more to have my son without his communication device.
We were told that we would have it back in a week. A week went by, and nothing. We waited a few days after the time that was given to us to expect it in the mail. Then my husband called. Words+, in California, mailed it to Texas. That didn’t make sense to us. If it had to go to Texas to be fixed, why weren’t we told?
Two weeks later and still nothing. It’s been over a month since we sent it to be fixed. We’ve paid for it to be fixed. My completely nonverbal autistic son has been without his device for over a month. My husband called yesterday. Guess what? It’s somewhere between Words+ and HP. HP? When did they get involved? Words+ is the software. HP is the hardware. Since it’s the screen that need to be replaced, that falls on HP. Only, nobody knows where it is now. We were told it shipped out from one to the other, but they can’t find the tracking information. It’s lost. Now what do I do?
I am so frustrated at the lack of support from Words+. I’m so angry that my son is still without his communication device. If I had known that this was going to happen, I would have went with a different company for a communication device. I should have gone with a device from DynaVox Mayer-Johnson.
I mentioned it on Twitter when it happened. My son’s communication device was broken at school. It’s a Say-It! SAM device. My son is completely nonverbal, and this was his main way of communicating. The device, which is expensive, was paid for by his insurance. The repair for it isn’t covered. That will be coming out of our pockets.
My husband sent it off last week. If the only thing that is wrong with it is the screen, the cost of parts will be $267. I don’t know what the cost for labor will be. I’ll find out when I get the bill. I also don’t know how long it will take. I’m hoping that it will only be a couple of weeks. A very long couple of weeks. Try not talking, at all, for two weeks, and then you will understand what my son is going through.
I don’t know how it was broken at school. No one there knows. Bottom line, as long as no one there knows anything, the school isn’t liable. When I first held the broken device in my hands, I felt like my heart had been stabbed. I went off on my own and had a breakdown. I didn’t want to do it in front of the kids. Communication is so difficult for my son, losing his “voice” was painful for me. It had taken so long to get him that device.
If you are a parent of a non-verbal autistic child, I’m sure you understand how the broken device has been such a hardship for my son. If you aren’t, just imagine that your child isn’t able to speak, and you will have an idea.
The new statistics for the rate of autism is 1 in 88. My child isn’t the only child with autism that is nonverbal. It seems like, as the rate rises, it becomes harder to get help for my son. Have people become desensitized to autism? Have they decided that it is something to be accepted, and can’t be changed? By people, I mean doctors and government officials. April is Autism Awareness month. From what I can see, we have plenty of awareness. People know about autism. Chances are, you have a child with autism, a family member with autism, or a friend with an autistic child. Awareness isn’t the problem. We need action. We need actual help. We need to know what causes autism and how to minimize it or cure it. With the way the rate of autism keeps rising, how long before it becomes a 1:1 rate?