Someone I Love

This poem was sent to me by a friend who also has a special needs child, his name is Grayson. His story and photos are on our website if you'd like to read more about this little angel. Thank you Erin for your emails, it's encouraging to receive support from someone who knows how life is when you have a special child in your life.
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Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and
renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that
most of us take for granted.

Someone I love will never have the opportunities that every child
should have.

Someone I love will need unconditional love and support after I am
gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and
prejudice at every turn, because they look, act, and/or learn
differently than others.

Someone I love has needs that require me to allow "outsiders" to
have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life
long after other children are able to assume a place as part of the
world.

Someone I love has needs that require more time and energy than I
have to give.

Someone I love has needs that mean I am not able to meet basic needs
of my own.

Someone I love has needs that have become the driving force behind
major decisions my family makes.

Someone I love has changed me in ways I will never be able to
describe.

Someone I love has taught me about love and about the really
important things in life...

And still others don't understand what it is to be me.. they aren't
living in my skin.

This touching dedication is from the book Living in My Skin, The
Insider's View of Life With a Special Needs Child by Lori Hickman.

Another "Commenter"

Had the "privilege" of receiving another comment. As follows with my reply:

Anonymous said...

Sorry to read about your daughters condition, thank God that the missing meds did not cause her any problems. But the bottom line is I feel that if your daughter is requiring meds that could endanger her well being and is that important why are you not giving her the meds yourself. If I had a child that required meds I would be more comfortable giving them myself, even if it meant going to school every morning. I would not rely on school staff or anyone else to make sure this is done. It sounds like you really love your child, but taking revenge on someone who didn't know the meds were due is the wrong approach. Everyone is human they make mistakes as I am sure you have made a few yourself. Continue your fight for Faith but don't forget why your doing it. Making others lives miserable is not the answer. You said you have faith in God so show it.

My Reply......

Dear Anonymous:

While I can appreciate your standing, I do have to work. Unfortunately I'm not capable of not working, nor do I know many people that can just "not work" to see that their child is administered medication. First of all, WHY should I need to go to school to do this? This is part of their job when they have Faith. Secondly, the aide DID know the meds were due. This morning was no different then any other morning over the past 4 yrs of Faith's schooling. You DO NOT make a mistake when it comes to a child's health condition; you think it would be fine if a parent "forgot" to take their cancer stricken child to chemo? No, it would not. Unless you stand in our shoes, you have no clue what you're talking about. The Board of Education makes OUR lives miserable, I'm just about to give them a taste of their own medicine. Until you have been on this side of the fence, don't throw stones.

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While I appreciate any comments, it seems that this commenter may be related to the previous commenter. Funny how it is folks can comment like this when they know NOTHING about what goes on

For my "commenter" on post "A Mother's Freedom"

I tried to comment myself on the blog in reply to your comment, but was unsuccessful. Therefore, this post is just for you. Thanks for visiting the blog and hope that you also stopped by our website

a concerned special ed. mom said...

I'm glad you love you daughter that much, but you should know the facts before you start an all out war. Your heart is over riding you mind. You should concentrate on the fight for your daughter and not on revenge on someone that was not at fault with the missing meds. You can't be held responsible for giving something you didn't know needed giving. If the aide had known your daughter was on meds and didn't give them then yes she would be responsible for the missing meds. She didn't know she was on meds so therefore you can't be blamed when they weren't given. Please keep fighting for your daughter she is well worth the fight. Just fight for the right reasons and not the wrong ones.

reply: Actually the aide knew about the meds. My daughter has been on seizure medication since she was 1 yr old. So yes, I am holding her totally responsible. Revenge? No, I wouldn't call it that; especially since the teacher made the comment "I'm real sorry that we missed giving Faith her meds, but I can't promise it won't happen again" That, to me, is unacceptable. I do fight with my heart, but only because my daughter IS my heart.

The Final Countdown

It's official. Our 1st Annual "Ride for Faith" Poker Run is now one week away! The past week has been exciting and productive. We've been able to add not one, but two more stops to our route AND our sponsor list has had quick growth just in the past couple of days. We're now almost 98% sure we have a band to play and the feedback we're getting about what the bikers think about the ride is great! That's the most important thing right now, we want to be sure that the bikers are happy and have a blast doing this. I know next year will be much better though. Putting all of this together in 35 days has definitely been a challenge. So far it's all seeming to work out. We're down to the wire now and the only pressure I'm feeling is to be sure that we have enough food. Of course that's something that will have to be a last minute thing; we'll be out buying up food on Saturday as we'll find out what it is that everyone will be bringing. As a last resort, I'm sure that hot dogs will pull us through nicely if food starts to run low.

As for the drama with the school board; I've learned that there are more severe steps that can be taken rather then dealing with them myself. I've exercised that right and it's now out of my hands. Perhaps Angie Carvelli will think the next time she snickers a little laughter when a parent tells her they are contacting the state......

Right now, I'm enjoying time with Faith and loving all the support we're getting. I have to say though, if it weren't for friends and family this would be a huge challange; it amazes me how folks come pouring out when you really need their support the most.

I just wanted to thank everyone for their encouragement, support and love through this whole thing; I wish my Mom could be here to see how many wonderful people surround us and are supporting us in this. Faith was her world and she would have been so amazed, as am I. I know she's seeing it all, just from a different angle.

Thank you all so much, it means the world to us to have you be a part of this wonderful cause!!!

A Mother's Freedom

Have you ever read an article on the President? I'm sure each of you have. Now with that taken into consideration, do you think that every article written has been consented by Mr Bush? Not even a chance. I've read articles that slander him up one side and down the other; more so, I've seen television shows that are rude and crude..... to the PRESIDENT. Do you know why this is, and how this can be done?

Let's take a walk down memory lane..... 1st Grade

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.

That's right boys and girls; it's the First Amendment of the United States Constitution. This is how those articles are written and published; freedom of speech. Now that our history lesson for today is complete, shall we move on with the regularly scheduled post?

Today I was finally able to speak with a gentleman from the BOE about my complaint on "the aide and the missed meds". He stated that in section"blah blah blah" article " blah de blah" that if a complaint was filed 10 days after the incident we didn't have a leg to stand on (my words, not his). Now this is the first I've heard of this 10 day rule; it's funny how they want to enforce these day rules when it's to their benefit, but God forbid if parents want to enforce day rules when they fail to follow procedure and not give an 8 day notice of an IEP. Pffft, but who are we? Ya know?

Back to the facts at hand. Upon him advising me this, I advised him that I would then just contact the state and go from there. He asked who it was we had been talking to at the state. I advised him that was something that I'd rather not disclose, seems this upset him and he made it a point to advise me that they are open to the public and anyone could contact them. I agreed and again advised him that I didn't wish to disclose that info. He asked that after speaking with the state contact that I could have them to call him directly to discuss anything further.

He then proceeded to advise me how he'd been given printed copies of Faith's blog and how several staff members were upset about their names being mentioned. Well now, is that so? First of all they are PUBLIC servants who work for the PUBLIC, anything I wish to say (reminder, our history lesson on Amendment 1 of the US Constitution) about them to the PUBLIC is just that. My freedom of speech. I haven't "slandered" anyone, or for that matter said anything untrue. Now take more time to ponder this. They're upset? Why? They don't like this being brought to the public attention? After his statement of their "unhappiness"; he proceeded to tell me that he would "have to contact their lawyer to see what could be done about this". Guess what? NOTHING!!!! Reminder: 1st Amendment of the United States Constitution (God I love my country!) Lastly let me say that this gentleman was very nice and professional; even after the point in the conversation when I became an emotional train wreck, he was very kind and stressed "off the record" how he respected me for standing up for my child.

Beyond all this drama; I've been calling for the past 2 days to get Faith's school records, from the first day her foot went inside the door to the last day that I drug her out because of an aide attitude problem. Needless to say, I've gotten from everyone (aside from the very helpful school secretary) a "we'll get to if we can, when we can" attitude. I'll be paying a visit to the school tomorrow morning to see if it's complete. If not, then I have the right to stand there and copy each and every page; oh yes. Let's not forget, they're charging us 20 cents per page copied. Unbelievable. But, that's fine. I'd pay as much as it took to get those records.

I also would like to take this oppurtunity to clarify a few things. First of all, not all of Faith's school years have been like this. The first two years of Faith's schooling were wonderful, however we've still fought for Faith to have a 1:1 aide from day (1); as we knew all good things must come to an end. . Wonderful teachers, wonderful aides..... small classroom. Faith got the attention she needed, even though one person was not assigned to her. I didn't worry and I didn't feel Faith was falling behind because of the lack of attention. She then moved on to the larger classroom with more needs, this is where it started to get alarming. In the middle of the school year the BOE made us remove Faith from that school (Nutter Fort) because it was not her "home school". We had moved to another town and the BOE advised us Faith could no longer attend Nutter Fort. They called us after dropping Faith off at school that morning and advised us that we had to come get her, no waiting and no notice and it couldn't wait until the end of the day. We had to come get her "now". This of course ended up being an absolute blessing in disguise! Faith started Big Elm and the teacher and aide there were as wonderful as when Faith had first started school. I dropped Faith off in the mornings and not one worry came to mind about her; I trusted these people with my daughter and I knew in my heart that they were there to make a difference in Faith's life.... and they did! The improvements Faith had made were wonderful; these teachers/aides were there because of the kids. I miss them so much; I really do. I would do anything for Faith to be able to be in one of their classes again. I've seen Faith regress so much from just last year leaving Big Elm to this year going back to Nutter Fort . It makes me so sad. I have not taken the opportunity to thank these teachers/aides for what they've done and I would like to do that now.

For all the teachers, aides and therapists who have made a difference in Faith's life, and been so much a part of her growth: Thank You. I truly love you all dearly for what you've done for my little girl. I miss you so much and I'm sure if Faith could do it, she'd express her thanks also. I know she remembers you all and misses you as much as I do. I'm sorry that I didn't take the time to do that before, but you know who you are when I express my gratitude.

IEP

Friday I received notification in the mail that Faith's IEP was to be held on June 6th. I received it on FRIDAY. It was written up on 5/30 and they are REQUIRED by law to give at least 8 day notification. This was not an 8 day notification.

I called the school on Monday morning and spoke with the teacher and advised her that the meeting was NOT to occur, that we weren't given proper notification and it was NOT to happen. Period. She said that she would have to check with Angela Madia (BOE) to see when they could schedule it. I told her that there was no seeing when it would suit THEIR schedule, as they had to work around MY schedule. Period.

Wednesday evening I began to think about the meeting and how after my call I hadn't heard anything at all. I decided to call the next morning to confirm that the meeting did NOT happen as I requested. So I did just that. Called the school and spoke with Mrs. Hilton. The meeting DID happen. They had it not only against my request, but without my permission. Nobody there to represent Faith. They conducted a meeting deciding what's best for MY daughter without us there! I then called the BOE and spoke to Angie Carvelli, I became upset and advised her it was not appropriate for them to hold this meeting without my permission. She argued the fact based on we had asked for a reconvene and that is what it was. I advised her that they must still give adequate notice and advised her that we would again have another state complaint filed. She laughed; yes, she laughed. I was absolutely livid.

The Harrison County BOE thinks they can run over parents like this. Time and time again, year after year this is their manipulative way. Not only are the kids being put on the back shelf; the parents aren't even being listened to!

I was so upset all day yesterday, needless to say it did more than ruin my day. I am so angry about it all.

Direct Violation

I never realized how I love those words. They're like a songbird singing on the windowsill on a bright sunshine morning.

I was told by the BOE (Angie Carvelli) after calling to file a "formal complaint" on the missed meds that it was a Citizen Complaint, not a Special Education Complaint. Found out directly from the state today; they are wrong. And the lady that we spoke to from the state became agitated that it seems that the school, the County office and the staff are trying to blow it off as such. So that's fine. I'll fill out their little paper and turn it into the school, but I will follow it up by also filing online at the state level to see that it gets attention. Actually it seems we've made just the right connections at state level. I heard from a source inside the BOE, but cannot confirm, that the BOE used special education funds to place new turf on Bridgeport field. Whether that is true or not, I can't say. And while it is not the intention of this blog to found unsubstantiated rumor, I wouldn't be surprised. The Harrison County Board of Education (IE: Carl Friebel, Vic Fisher, Angela Madia, Angie Carvelli) have not been the least bit cooperative in any way, and have, in fact, made this struggle a very, very personal one. So, in deference to the uncooperative spirit of this board, I will do my best to win this fight, regardless of how difficult this may make their lives. They've certainly not made Faith's any easier.

I'm usually not an evil person. But the day of the IEP meeting when I left there in tears and for the first time felt like throwing my hands in the air and screaming "Fine... you win. I quit!!!". Then I got pissed. I was pissed because they actually got me to a point that I felt like giving up. But then I realized if I gave up on this, who would there be to fight for Faith? She can't fight for herself and it is my duty as her mother to fight for her. Period.

Then the aide, oh yes that aide. Well she crossed the line with her tone and "I didn't do anything wrong" attitude; now it's personal. Very personal. And I'm done. I'm sick of trying to be understanding and nice about this. I'm sick of people looking at these kids as only their salary. Don't get me wrong, not everyone in special education is like this; but the ones that are should perhaps apply at McDonalds drive thru, it doesn't take much skill to flip a burger or two.

This is MY daughter and I will fight for her to the end and now in FULL FORCE. I'm done. Done being nice. Done being understanding. Done with putting up with the excuses and the attitudes. Done with the bullshit.

I'm sure that the BOE has made plenty of mistakes that need brought to the State's attention. So I will now make it my personal goal to see that they pay for what they are doing to these children.

If you're a parent of a special needs child and you're also sick of the excuses and attitudes; please join us in this fight. We're all that our children have.

Truth and Consequence

Being faced with the truth sometimes isn't a pleasant experience, especially when it comes to people. Consequence, on the other hand, is never pleasant.

This morning I was faced with truth; she was faced with consequence.

I dropped Faith off for her last day of school. She's missed the last 3 days becuase she's not been feeling well. Upon me dropping her off I took in some flyers for our Poker Run as the aides there said they would be interested in participating and hanging up flyers around their town. I, of course, was glad to comply since it seems this is the only way that we can succeed in bringing attention to this matter; word of mouth.

I placed Faith in her stroller and went to hand the flyers to Maletha. She immediately denied recieving them stating "I can't hand those out, I'm not going to support the poker run anymore." I was a bit taken back and thought that word had gotten around that she was interested in this cause and perhaps it was her job in jeopardy. Of course, I would not want to do that. I then told her "Ok, I'll just stick them in Faith's bag and if you could let Lisa know they're in there." Again she declined and I then realized her harsh and short tone. I was curious as to why her support had all of a sudden vanished.

She then went on to inform me that she had read Faith's blog and no longer wanted to support this cause. She didn't need to say anymore, and while I realized why she had taken a turn; I didn't fully understand her reasoning. First, the blog entry dated September 30th must be read before understanding anything further. Maletha was the aide/LPN that failed to give Faith her seizure meds. Now, any parent has their child's interest first and foremost, especially parents of special needs children who have watched their children endure so much. This is what pissed her off to the point not to support this cause? And yes, this from a person who stated that she fully understood how these children are suffering in the school system.

Now take a moment to think about this, if you will. I have thought and struggled with this all day. This "employee" of the school system is upset because she didn't do her job??? Upset that I, as a parent, felt strongly enough about what had happened to state it openly and rightly so in an online blog?? SHE is upset???? How does she think I felt finding out that my child failed to get the medication she REQUIRES on a daily basis. And I don't have the freedom to do so? Well pardon me for being upset over this, but it seems that one would find it more strange that a parent NOT get upset over something like this. I felt that blogging about it was something I had every right to do, I didn't call the BOE and file a complaint on her for not doing her job and by all means that is something I definitely could have done; and can still do, and may still do.

"My husband, nor I or any of my friends will participate in the run", was her final statement to this matter. I asked how it was she felt this right, I reminded her that it was HER mistake that she didn't administer Faith's medication and reminded her statement in "knowing what these kids go through by working with them on a day to day basis". I find it very hard to believe that anyone would withdraw their support from a cause because of something that was nobody's fault but their own.

I left upset; very upset. I didn't even want my daughter around this woman. I found her to be hateful and dishonest; these kids are her salary and that's it. If these kids meant anything at all to her, what I stated in an online blog (which, may I mention to be nothing but the truth) would not stop her from being supportive.

I met Tim back at the school within 15 minutes and pulled Faith out of school. Her last day of school for the year was missed all because an aide cannot face the consequences of something she was at fault for.

In all of the 5 years of dealing with issues from the school board, I had never felt once for it to be personal; before today. Now, it's personal. It's personal for my little girl, for my family and it will be personal from anyone who crosses our path. The boxing gloves are on and in full force; we will not hesitate to hit below the belt.

Correction to blog entry 9/30/06

NOTE: The blog entry on 9/20/06 was incorrect. The aide that I mentioned “Lisa” was not the correct name. The correct name is “Maletha”. My apologies to Lisa, at that time I was unaware of their names and now that all this is brought to attention I wanted to make that correction.

Sponsors

Well, this has truly been a learning experience; I'll give it that if nothing else. Being our first year we need some type of guidance and we've gotten some here and there.

We finally did round up enough locations for the ride. Unbelievable that people wouldn't even be one of our stops. All of them practically fell into our lap except one, our hometown. I was so disappointed and frustrated be ask time and time and time again; just to get nothing. Finally one of the places said yes, of course only if they were stop 4; I suppose stop 4 makes the most money. So we moved around our route and all the stops are all lined up now. That's a huge worry off our minds.

We've had to go to extreme measures to try and get sponsorship. We've been mailing out to local businesses individually and we've also placed an ad in the paper. We've spent $51.25 on postage to mail out 125 direct mailings and then $43.80 for one day, yes (1) day, run in the local newspaper. However we did decide since it's going to cost that much for one (1) day; then what better day to run the ad then Sunday. So I've already trucked out to the corner store this morning to pick it up. I'll be scanning it later today and adding it to the website and blog. Not only are we hoping this will generate sponsorship, but also attention.

Don't get me wrong; I love my hometown. Love where I grew up and really can't even fathom the idea of any place else being home; but I have to say I'm very disappointed by the response we've gotten from this. I mean it's for a great cause! If we don't stand up for these kids, who will? We're all they have and they depend on us to do what's right for them. I suppose it's a bit of sadness I feel, knowing that not only are our special children invisible to the school system but now wondering if the community also just "turns the other cheek". If people just had the opportunity of having these children in their life for one day, just one day..... then and only then would they see what an inspiration and joy they are. The poem "I Am The Child" sums it up well. I've been taught so many things from Faith.

I'm so blessed to have her in my life.

I just want to take the opportunity to thank those of you who have thought with your heart instead of your mind and taken a part in this cause. The children may not "know"; but they can "feel". Hopefully our cause to bring awareness will prevail and these kids will finally get the attention they've deserved all along. Thank you.