My instruction book got wet

There are challenges to have having a child, especially if you aren’t close to other parents. It only takes your first blow out diaper to realize you might be in over your head. You constantly wonder if you are doing the right thing. Constantly! You struggle with every single decision. Over car seats, to binkies, what brand diaper, to daycare choices. It doesn’t get easier either. Soon you are deciding on which bike helmet, which sneakers, best way to discipline and reward and bed times. There is no instruction booklet and even if you have kids, or have been around them, each one is different. Sure…there are certain milestones each kid will reach. Developmentally…unless something is wrong, they will roll over at this age, start to recognize mom and dad at this age…but each kid is different like snowflakes no one is the same, so what works for one doesn’t always work for the other.

Having a child with special needs is like that – only now someone has given you a basic instruction booklet (because after all you were a kid once) but it’s wet…so parts of the book ran together, or broke off. Some other parts are all mushy. Every now and then you can read some of it and it works, but for the most part, everything you know is muddled.images

My son is classified with ADHD. However, he has other things going in relation to or because of it. He has noise sensitivity. What does that mean for a parent? Well it means what you think was fun as a kid…watching fireworks for example; going to an amusement park is not fun for him. The noise is overwhelming or to loud or both. I took him to his first amusement park and as we stood in line for the roller coaster (which was right next to the pirate ship, directly across another roller-coaster) between all the screaming, the screeching of the breaks, the people talking and laughing, I thought my son would lose it. I felt like a failure. How could I not foresee this? How could you? If you don’t suffer from it yourself, it is hard to remember that it is there. Especially when it held so much joy for you as a child. We finally got to a quieter side of the park but it just goes to show you how easy it is to ‘forget’ something as little as that.

Fireworks.firework Forget it for obvious reasons. Trains, buses, pretty much anything with squeaky breaks…nope.

He can be so hard on himself that you would think we are that hard on him (we aren’t). If he can’t get something right the first time (tying shoes for example) he thinks he is stupid and wants to give up.
He can, at the same time, be so blasé about things: “so I can’t tie my shoes, oh well I will just wear slippers”. You never actually know which way it is going to go. I don’t know what part of this is him and what part is the medication he was on, which brings us to medication:

For years we have been going back and forth with his doctor and the insurance company and the school. Finally we have him on a non-stimulant medication. These medications are meant to have fewer side effects then their stimulant brothers, but offer the same benefits. If I told you the nightmare, the absolute stress inducing, gray hair producing ordeal it was to even get the medication, never mind get it approved by the insurance company and into my hands…forget that week and half of hell…but just to get to the point where we could try it…years…I can’t tell you how appalled at the system I am. To want children to start off with drugs actual drugs is ludicrous. They should be started (if started at all) on non-stimulant medications. This is a rant I had before. So I won’t be going on it again. I will just say that I still find it ridiculous that this how they handle things.

Which leads me to – being an advocate for your child: You know your child better than anyone else. You know if they can handle 50 after school programs or 0. You know if they like their sandwiches cut into squares or triangles… you know them. You have to fight for them. You have to speak up and tell everyone who sees them, teachers, doctors, etc. that this is what your child needs. No I don’t mean to be pushy and entitled. Little Johnny shouldn’t be allowed to sit in the back of the class and flick boogers at people because it helps him relax. I am talking about a reasonable IEP, reasonable medications and therapies, reasonable school day hours, reasonable homework amounts (yes I believe in homework, no I don’t believe it should take a 7 year old over an hour to do it).
You have to stand up for your child in a calm, reasonable, manner because no one else will. In our school district they are mulling over a grant from the state called the Extended Learning Grant. See more here: 

What this means is that the school district will receive a grant of x and extend the school hours, either by extending the school hours or the school year. Now, at the time of the grant, when the school district applied, their proposed schedule was for a longer school day. A longer. School. Day. For my 7 year old. Who, by the way, already hates school. The proposal would have the kids getting on the bus at 7 and not getting home until almost 5. It is a ludicrous proposal that would end in the failure of millions of children. (our district isn’t the only one that wants to try this) Because, heaven forbid our children don’t do well on standardized testing. I am so against this extended learning day that if they pass it I will take my son out of the school district. I know that sounds extreme, but you have to be an advocate for your child. They can’t speak up. You can. Sure, some kids might be able to handle a longer school day. I know for a fact that mine can’t. I am willing to bet, most elementary school kids…won’t be able to perform well in that environment. I think what children need more of is more time at home. More time with their parents. More time being kids, playing outside, climbing trees, catching fireflies, building snowmen and less time worrying about the college applications when they are in third grade. Maybe I am wrong…

Again how do you know you are doing it right? And again, each child is different.

The other day we told our son to go out and play. He went out, sat down at the patio table and stared the flowers. When I went out and asked him what he was doing he said, “I am too big to play outside…” My husband and I thought, perhaps it is the medication. Without the medication, he can’t concentrate at school. He truly has ADHD, he isn’t one of those kids who is just uncontrollable. So what do you do? Ideally you take him off the medication, tell the school to deal with it. But they have 20 other kids, yours isn’t the only one with an IEP, and yours isn’t the only one there to get an education. You could try behavior rewards, but that again requires the teachers support. So what do you do? Keep him on medication that makes him stare at flowers? Take him off and risk him suffering in school? There is nothing in the instruction booklet about this.

What do you do when the school district extends the school day?
What do you do when your child physically can’t stand school?
What do you do when you have medical condition that prevents you from doing all the things you want to do with your child? How do you make it up to them?
What do you do when you have a child with special needs and you try to understand them but fail to do so?
What do you do you do?


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