Tag Archives: bad day

The Pain in My Heart

11 Jan

INTELLECTUAL DIS-ABILITY

There are no words to describe how my heart hurts when those words are used to describe my son.

I feel the sadness take over my soul. The well starts to fill, and if not contained I might very well overflow today.

I listen to all my friends talk and prepare for their child to enter kindergarten. It is all really simple stuff like, what teacher will they have, or will they ride the bus?

I wish it was that simple for us. No, it isn’t. We have to undergo another round of testing, followed IEP meeting after IEP meeting.

We have to fight to get the extra help our kids need. We have to be prepared to go to war for them.

My child is not disabled.

We are all human aren’t we? We aren’t so different inside.

So here are my 3 words for today.

Here are my 3 words to explain how I feel about my son. Here is how I feel it should read.

Today I was informed that the school psychologist is suggesting that Blaise not be completely mainstreamed. Why? She feels that he needs to be labeled as being, “Intellectually Disabled.” God, that just burns me up, it hurts.

Does my son have learning disabilities, of course. I know plenty of “typical” people who have learning disorders as well. I know they are trying to get him the best care possible at school, but my heart is heavy right now.

I want my son to get the best education possible. I want him to have as “normal” a life as possible. I want him to love school and love life. I know that the labels are just there to get “services” for school, but I hate them. I hate labels. I hate it when others label my son.

I hate that I even have to fight for him to get an education. I hate that I have to fight to get him an aid so that he has the best chance at learning. Oh let’s not forget the aid to help him stay away from food, you know because HIS LIFE DEPENDS ON IT!

Why, why is this even a question. Why with all the information you give people they think they know better. They think that your child has an eating disorder that they will grow out of. They think that your child should be able to learn to control themselves around food. They think that sheer will power is all your child with PWS needs. I wish they only knew. I wish they knew what it was like to be on a 24/7 vigil for your child. To wake up in the middle of the night and say, “oh crap I left the fridge unlocked.” To know what it is like to never get a full night sleep because you are always listening, always waiting for the moment your kid gets into the food when your asleep.

Blaise has it tough. He has 3 diagnosis. Prader-Willi Syndrome/PDD-NOS(autism spectrum disorder)/Sensory Processing Disorder. This is a lot for one little man to deal with. In saying all that do I think he can handle school, YES!!! ABSOLUTELY. Do I think he needs an aide full-time, YES! ABSOLUTELY.

I will keep an open mind as I go into this meeting with the school. I will think about what they are offering. I will also be ready to go to battle if I have to, whatever it takes.

This is just a normal day for us. There is always so much, so much to think about, so much that weighs on me. Today though I am in a valley. Feeling sad for my son. Feeling sad for his never-ending fight in life.

As the parent of a child with special needs we already fight so many battles at home. Why, why I ask, should we have to fight for our children to get an education? I will never understand. ;(

I’m Not Gonna Lie…

4 Dec

A blog should be honest right?

Today was this kind of day for me…..

I don’t know what is wrong today, or yesterday for that matter, but I am just in a funk. I am just in a bad mood. I am cranky, stressed out, tense, and to be quite honest, kinda mean.

I hate when I feel like this because it totally consumes me. It consumes every single aspect of my being. So today I find myself totally consumed with a massive amount of insecurity. I have been doing so good lately with not feeling bad about my self, and today it was as if I put my self in reverse. I am totally aware of the fact that what I am feeling is coming out of my stress and that it’s not real, however that doesn’t necessarily make it any better.

To add insult to injury I got a lovely letter in the mail from the State Department today regarding my passport. Three weeks after applying they send me this letter stating that I didn’t provide SUFFICIENT proof of my identity. Apparently a certified birth certificate and current drivers liscence(by the way this is what they told me was required and was all that was required) is no longer good enough. They sent me the letter and said that I need to submit 5 DOCUMENTS TO PROVE WHO I AM and….THAT ALL THE DOCUMENTS NEED TO BE 5 YEARS OR OLDER. Oh really. Then they go on to add a 5 page attachment of which I am to list EVERY SINGLE PLACE I EVER LIVED. They underline and restate that I must list EVERY single residence. As if I remember all that. So I am leaving for Mexico in roughly six weeks, the trip of a lifetime for me, given as a gift by my amazing sister. This is my first time out of the country, and my first time away from my kids. This is supposed to be a chance for me to recharge and have some real time to reclaim myself. So help me god if the state department screws this up for me, well…I am not sure I should post those not so nice words on here tonight.

So you see the end result of all of this mess is this…I was not nice to my kids today, mean to my mom, and really lame to my husband. So a blanket apology to all of the above is needed. I AM SORRY FOR BEING NASTY TO YOU.

I really don’t know how I even managed to write this blog tonight, yes, I am in that bad of a mood.

I made a promise to myself to be committed, and for me that means writing no matter what. That is one thing that makes me happy today, being committed and following through with a promise to myself.

I am going to be this bad day to rest now. I hope to wake tomorrow feeling a bit better than today.

Not everyday can be a good day.

I will accept all the days good and bad. I will see today for what it is a pile of you know what, and then let it go.

So dear readers can you let go of your bad days, maybe bad weeks, sometimes even bad years?

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