Tuesday, September 18, 2012

The Demise of Our Children

I am so disillusioned by the state of our country these days that I am almost speechless. ALMOST. I am constantly amazed by what I hear on the news about shootings and fighting and killing. Most of you think I am talking about world affairs don't you? No, I am talking about our children and our schools. These things are happening on a regular basis in our children's schools. As parents we should be so outraged that we tell our kiddos that there will not be a toy or car or video game left if we ever hear of them bullying someone. But that is not happening. So do we blame the children, the schools, or the parents??

 I have experienced as a parent the receiving end of the bullying with my child and I will say that with all the very silly privacy rules in place that I was not allowed to know the names of the children or parents of the offenders. How ridiculous is that? This people are terrorizing my child and you are protecting them? I am also very aware that the no tolerance policy in schools only takes effect when they want it to. In our case the bullies were very prominent athletes at the school and they did not receive one iota of disciplinary action. The school's response was to tell my child that if he got in a fight with them he would not get in trouble for defending himself. Um, they are three times his size and you are promoting violence. Nice.

 As a result of this chain of events, my child now despises school and the assailants have gone on to bully others unscathed. I think about the children that have died over bullying. I wonder how many of them begged for help and their schools let them down as well. I wonder how many of them kept their pain and suffering to themselves until they could not handle it anymore and snapped. I am grateful my son came to me so I could help him.

 But what can we do? Parents are so busy anymore and so many are not willing to get involved unless it is something that directly involves them. We have lost our love of community and our theory that it takes a village to raise children. Now if anyone dares correct or even report bad behavior of our children, the first thing the parents do is shuck responsibility. "It could not possibly be my Johnny's fault! He is perfect!" News flash!! All kids mess up and do stupid stuff.

 I truly fear what my youngest son has to look forward to in school in a few years. It is some scary stuff. You are really not safe anywhere anymore. Not at the mall, not at the movie and not even in school. We need to get God, discipline and responsibility back in our kids lives before it is too late. I ask that tonight and every night you say a prayer that our country gets back on track and our children as well.

Tuesday, January 17, 2012

My IEP Frustration

Ok folks. This is my venting post about trying to get an IEP (Individual Education Program) in the public school system. Let me preface this by stating that I am no stranger for fighting for my child. W was born addicted to cocaine, thanks to his birthmother, which in turn has caused him numerous health issues. He has had problems since his first day on this earth and I have been fighting for him since that day. Nothing comes easy. It almost seems as if you are the only one who is willing to go that extra mile for the child, that everyone else is satisfied with letting things sit at status quo. You have to push and push to accomplish any small task.

I fought with the pediatrician for 2 years to get W help early on when he was not meeting his milestones but I was told that all kids are different. He will get there when he gets there. When he was two and could not even say Mama, I finally found out on my own about Early Intervention on the internet and got him into Hand in Hand by myself. There he started all his therapy which started the ball rolling to recovery. This also started my uphill, grueling, every day battle for this child to become a normal functioning child. There were also many health issues I fought for. I had to beg to be referred to gastroenterologists and ENTs and neurologists. W could not poop without medication until this year!! He had severe sleep apnea that I finally got him to a ENT who took his adenoids out at 4 so he could sleep more than an hour at a time. He had not done that in his entire life!

I say this all not to evoke sympathy but to show you mine and Wade and W's resolve. We are no strangers to a battle. But this school system is like nothing I have encountered thus far. These people do not make any sense!! It is like talking to the wall and the wall just doesn't seem to get it at all! I don't know how anyone gets services unless your child is severely handicapped. I know these special ed. teachers care. They have to or they would find another career path. Maybe they are hardened by the strict guidelines the state has tied their hands with. But they just don't seem to care. When I bring that to their attention I get the response, "Look I am just trying to lay it all out there so you know what you are up against." Well how about a little compassion and a little glimmer of a teacher who wants to help me with getting my child to succeed! That would go a million miles toward dealing with all the bureaucratic crap we are up against.

So thanks for letting me vent. We have a meeting with the special ed dept., the principal, W's teacher, and Wade and I next week. I have a fabulous letter from W's psychologist to accompany his diagnosis paperwork where she basically tells them to get there crap together and "DON'T MAKE ME COME DOWN THERE!!" Gotta love Dr. Barnes!!

Sunday, September 18, 2011

The Verdict

Well after fighting and begging and dragging poor W to countless doctors and therapists, we finally have a diagnosis. Autism. Isn't his what I wanted? For someone to see what I see and label it so I can get him help? Yes and No. It is so hard to explain. I have known for years that there is a problem, a big problem. I have also spent years trying to get someone, anyone, to see what I see. To spend a little time with W, he is a delight. He is chatty and quirky and funny. So many have told me I am crazy and that he is fine, but he is so not fine. He has many struggles that no one sees but Wade and I. Believe me I would have given my right arm for him to be fine and just quirky.

On the one hand, I feel like a huge weight has been lifted off of my shoulders. The weight of trying to find acknowledgement of a problem and the proper testing. There is something seriously wrong with our system if a parent has to struggle so to get her/his child help and the insane cost of therapy is robbery.

On the other hand, I feel like we have opened a can of worms, so to speak, and it is all just beginning for W. I know he is high functioning and believe me I am so grateful for that and I know that there are children so much worse off but that does not lesson our pain of having a special needs child. We all want our kids to be perfect without a care in the world, right??

So I type this uncharacteristically serious post to say that I have my diagnosis for W, FINALLY, and it does not provide me with as much closure as I had hoped. It has left me sort of empty and sad for a bit. It was much harder to hear than I anticipated even though I knew in my heart what they were going to say. BUT---- I will remember where sweet W started and how far he has come and how strong he is. His fortitude will see him thru and he will be fine. He will continue to plug along in therapy and school and amaze us all and who knows? He may become the next Bill Gates!!

Saturday, July 16, 2011

A Typical Morning Around Here...

A friend of mine(THANK YOU SueMac!) recently did a video of a day in her life and I thought that was such a clever idea. However, there is no way I could accomplish this. There is no way I could get W everywhere and man a camera so I thought I would just log a written account of an audio day for you. All commentary is W speaking except when specified as someone else. So here goes:

2:58AM-Good morning Mama! Can I watch TV?

3:05 AM-Can I watch TV?

3:20 AM-Can I watch TV?

3:30AM-Falls back to sleep thank you LORD!!!

6:00AM-(Teen) Mom where is the Tylenol?

6:30AM-(Skittles) Paw scratching my face (Dog translation-I have to go outside!!!)

7:00AM-(Wade) Hi honey I am home! (Husband home from business trip)

7:05AM-I am hungry, let's go downstairs

7:06AM-(Teen again)Mom the cinnamon rolls say bake for 13-15 minutes. How long do I bake them? (Really?)

7:10AM-Mom will you play on the Wii with me?

7:15AM-Mom will you play on the Wii with me?

7:20AM-Mom will you play on the Wii with me?

7:25AM-Mom will you play on the Wii with me?

7:30AM-I am hungry but I don't want cinnamon rolls. Will you play on the Wii with me?

7:35AM-No I do not want any of the 25 things you have offered me for breakfast. I want Burger King so I can have the Transformer toy I just saw on TV. Can we go there? Crying ensues.

7:40AM-Mom will you play on the Wii with me?

7:45AM-Mom C ate all the cinnamon rolls!

7:46AM Mom will you play on the Wii with me?

7:50AM-I am hungry!

8:00AM-I am tired. I am going to go lie down.

8:01AM-Mom will you play on the Wii with me?

I will spare you the rest but you get an idea of a typical morning and you can just imagine how much fun living with an OCD child is for the rest of the day!! It is never a dull moment that is for sure! And I have learned to sleep in 5 minute intervals. We just take it for what it is and most of the time just go on but I am not saying that sometimes I don't loose it with the repeating. But in our family we try to see the funny in things. Some things you can either laugh at it or cry. And we would sure rather be laughing so I hope you can see the funny in this as well.

Sidebar: W just asked me if bad ass is a bad word! Wonder what teen he heard that from????? It is going to be a looonnnggg day.

Tuesday, July 12, 2011

To Retain or not to retain...THAT is the question

Well the time has come for me to eat crow! At the end of the school year, W's teacher, who I do not think did a good job, but that is another entry, told me that she thought I should retain W in kindergarten for another year. Not my baby!!! He is brilliant!

Then the new counselor who has never laid one eyeball on my child called me on the phone and said that according to my chart I was "undecided" about retention for next year. Well any of you that know me can imagine how that flew all over me. "I am not undecided about anything," I told her. "I am quite clear on all the facts." Then I proceeded to write letters voicing my displeasure over the schools lack of efforts on my child's part and his getting kicked out of his IEP and yadda yadda yadda.

So I hired tutors to teach W to read and write this summer and get him ready for first grade. Tutors who know W like a book and who I trust completely. They sat me down last week and recommended that I indeed need to retain W another year in kindergarten. That in spite of all our efforts, he is just not ready. I should continue to pursue my quest for a new IEP and hand pick his teacher with the aid of the principal and counselor. UGH now I have to call that ding dong counselor and eat crow! What I do for my kids!!

Oh well, the pitfalls of being passionate about stuff, right? Sometimes you have to eat crow. But the other times? You get er done!!!

Sunday, July 3, 2011

Another disaster (I mean doctor) appointment.

Well I am trying to figure out a way to describe what happened at W's doctor appointment in a positive light. But I cannot think of any. It was truly an event that I could never accurately portray and even if I could, you would never believe it. The hardest part of the whole thing is to get people to understand that we are not dealing with a rational thinking child. He is an anxiety ridden ball of OCD and language barriers that make it impossible to reason with or negotiate with him. I tried to explain this to the nurse as she was getting ready to do "lab work" and she said oh I know. My son is just like that. That told me right there that she had no friggin clue what was about to happen- that the next few minutes would play out like a scene from Rosemary's Baby.

As soon as the word blood work was mentioned, W bolted for the door. The fight began as W went into complete survival mode-fight or flight. I will spare you all the gory details but in the end, the room looked like we had slaughtered a pig in there and W left with 2 blown veins, the nurse was bandaged, everyone had blood on their clothes, and no blood work was achieved. We hung our heads in shame and slunk to the car.

Let me back up a minute. Before the massacre started, the doctor tells me they want to admit W to the hospital for 24 hours and insert a tube in his nose and down his esophagus to be left there for a day to measure his pH levels. OK people, W will never cooperate enough for this to happen. My concerns, as usual, were dismissed as those of a neurotic mother who is overprotective. After the massacre, I think they finally see what I was talking about.

We left the doctor's office and Wade and I sat in the car in silence for several minutes not knowing what to do or say. Finally, Wade broke the silence and said, "There is no way he will allow them to put a tube down his nose. It is not worth the trauma to him." Hallelujah!!! The voice of reason! We are thankfully on the same page and I will be calling the doctor on Tuesday to cancel procedure. The doctor's office will be doing the happy dance after my call I am sure!!!

Sunday, June 12, 2011

The dentist

I will start this entry by telling you that a few weeks ago I noticed something in W's mouth that I thought was food and after scrubbing his teeth realized that it was his permanent teeth growing in behind the baby teeth. Shortly after that, I took Shark Boy to the dentist and we agreed that the two bottom baby teeth would need to be pulled. Oh dear Lord help me!!! W can barely survive a teeth cleaning and we have to do that with a regular toothbrush because the electric one freaks him out. So the wonderful dentist suggested I give him a Valium 30 minutes before the appointment and that plus the happy gas should knock him into another world.

Now, I knew that this idea would not go as planned but I did not know what would happen. So Thursday morning rolls around and we give W the Valium and we wait. We get in the car and W gets steadily louder and more hyper and squirmier and LOUDER and LOUDER and I am having a come apart in my mind thinking, "THIS IS NOT WORKING!!" We get to the dentist and they say are you sure you gave it to him? Well not to worry the happy gas will knock him out. NOT! He was like a pinball machine ball bouncing off of the walls and it got worse with every moment! The dentist said he had never seen anything like it!

Well fortunately our dentist is the best thing ever and he acted as silly as W, which W loved and they managed to "dance his teeth" right out of his head. It was a miracle. Then the dentist says to me---are you ready? "Now that Valium is time released so he will be in and out all day." Yes, in and out of insanity!!! He got crazier and crazier and finally crashed about 10:30 that night. Never slept a wink and I don't think he sat down either!

Another day in my crazy world of unpredictable happenings. As usual, when I told them that he would not react normally to Valium I was dismissed as I did not know what I was talking about. I guess that is my cross to bear in every situation because you know-- I AM ONLY HIS MOTHER!!