Sweet Faith

Long Time

2010-02-21T20:15:00.001-05:00

For those of you who may have followed us, I want to apologize for not posting in so long. As many of you know... life happens.

More to come later....

The Word "Retard"

2008-06-01T08:22:00.002-05:00

This is a blog entry that a fellow parent posted on Faith's MySpace page
______________________________________________________________

Below is a copy of the transcript of the speech given by Soeren
Palumbo regarding the use of the word retard. I found it at
http://www.ncpad.org/yourwrites/fact_sheet.php?sheet=514

'Retard' Speech Made by High School Senior
(Though our Community Voice column typically involves anecdotes about the effectiveness of exercise or physical activity for people with disabilities, this month we decided to feature an essay by Soeren Palumbo which has been highlighted on national organization websites, including the The Arc of Illinois. Soeren is a senior honors student and big brother to Olivia, who has an intellectual disability. During Illinois Writer's Week last month, Soeren gave the following speech to a gymnasium full of his high school peers and faculty at Fremd High School, Palatine, IL, and received a standing ovation.)

"I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender. So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, 'Oh my gaw! I think it is so cute that our school brings in the black kids
from around the district to wash our windows!' The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, 'Hey, Negro! You missed a spot!' The young man did not turn around. The first girl smiled a bland smile that all white girls- hell, all white people- have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.

"So now it's your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch 'em in the face.

"Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism? Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school hates racism and sexism and, by that logic, discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you. Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination, only to turn and hate those around you without the ability to defend themselves, the ONLY ones around you without the ability to defend themselves. Pinch yourself for each time you have called someone else a "retard".

"If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the hate focused on one person, and no, it wasn't the slanted Asian eyes or cookie-cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you, doesn't it?).

"The girl didn't say "hey, Negro." There was no black person. It was a
mentally handicapped boy washing the windows. It was "Hey retard." I removed the word "retard". I removed the word that destroys the dignity
of our most innocent. I removed the single most hateful word in the
entire English language. I don't understand why we use the word; I don't think I ever will (understand). In such an era of political correctness, why
is it that "retard" is still ok? Why do we allow it? Why don't we stop using the word? Maybe students can't handle stopping -I hope that offends you students, it was meant to; but ,I don't think the adults, here can (handle stopping) either. Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word "faggot" or "nigger" - hell, (even) the word "Negro" - used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means, if you have. That's what I thought. Clearly, this obviously isn't a problem contained (only) within our age group.

"So why am I doing this? Why do I risk being misunderstood and
resented by this school's student body and staff? Because I know how much you can learn from people, all people, even- no, not even, especially- the mentally handicapped. I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her Cheerio's. And as I sit down, she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hiding the question-mark-shaped scar above her ear from her brain surgery two Christmases ago. She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication, but I don't notice that anymore. I lean over to her and say, "Good morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her Cheerio's. I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonna see Mista Bee!" she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man, outside of our family, on the entire planet; and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking. She finishes her cheerio's and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7'o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school. I watch the bus disappear around the turn and I can't help but remember the jokes..... The short bus..... The retard rocket. No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some mature kid's joke. She will always be the butt of some "adult"'s joke.

"By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt (others), she will never be accepted.
That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what it is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it's nothing but another form of hate. It's more hateful than racism, more hateful than sexism, more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "retard", before the next time you shrug off someone else's use of the word "retard". Think of the people you hurt, both the mentally handicapped and those who love them. If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of us will (find) in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is "retarded".

"Maybe this has become more of an issue today because society is
changing, slowly, to be sure, but changing nonetheless. The mentally
handicapped aren't being locked in their family's basement anymore.
The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.

"I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education". I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope
that, someday, you will love somebody as much as I love her. I love you, Olivia."

Uncle David

2008-01-05T15:22:00.000-05:00

What I want to post about is something very special.

It's about a very special man named David. He attended our car show and took home "Faith's Favorite" and "Best of Show". His car was unbelievable and it showed how much sweat and work he had put into the vehicle. It meant a lot for us to present him with these awards. What's more special about David is that he lost his daughter in 2002; the same year as I lost my mother. January 13, 2002.... which means the same year, the same day as we lost my Mom. The story behind the beautiful vehicle was so very touching. It was like a bond was formed immediately. Even though I didn't have the opportunity to talk with him much at the car show, I could tell he was an amazing man. It warmed my heart to see him win those trophies and I never had a doubt that those trophies should have went to anyone but him. I was so upset that I didn't get photos of the event and of David's special beautiful car.

About a week before Christmas I received an email at work from my husband. He told me that he had gotten a very interesting call about someone wanting to meet Faith. I emailed him back promptly to find out the details... his response was that he would tell me when I called home on lunch. So I did.

It was David. He said he has been thinking about the car show and Faith since September and would like to meet her. I was thrilled. This was, by far, more than I could have ever hoped for. It truly touched me that our little girl and our car show had such an impact on someone that they had called us months after the show. I spoke with him on the phone and I don't think I've ever spoken to a sweeter guy. He mentioned that he would like to come visit Faith and told me that he had picked her up something for Christmas. Isn't that so touching? Through all the madness of Christmas, he remembered my little Faith Ellen.

We met he, his wife and 2 granddaughters for dinner the Saturday before Christmas. It was such a wonderful time and Faith just loved the company! Of course the gift he had gotten her was a HUGE hit (Chicken Dance Elmo) and it really touched me that he and his family thought of us. Spending the afternoon with them was a blessing and turned out to be a wonderful experience.

I am so emotional about our story touching the life of David like it did. David's story sure has touched the life of our family as well.

And to Faith's advantage.... now she has herself an Uncle David!

My little 9 yr old

2007-12-24T11:31:00.000-05:00

Today is Faith Ellen's birthday, Christmas Eve. I can hardly believe I've had this precious angel in my life for 9 yrs. She's taught me so much in the short time she's been with me. I don't know what my life would be without her. Happy Birthday baby girl.... Mommy loves you so much and thanks God every day he chose her to bless with his special little angel.

God Sent To Me An Angel

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."

"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

- Paul Dammann

Website

2007-11-27T20:52:00.000-05:00

Just wanted to let anyone and everyone know that's trying to access our website that it has been down due to a domain transfer. We tried to move the hosting from a local company to GoDaddy... which we've found out wasn't the best idea. We've now cancelled GoDaddy and as soon as we are refunded those funds we will be transferring to BlueHost, who should have the website a go within a day or two.

Worst case scenerio..... we're hoping that it will be back up within a week. Just wanted to let everyone know that we're still here.... just temporarily lost in cyber space

State Complaint

2007-10-22T13:29:00.000-05:00

At some point you have to take things a bit further.... so I did just that. I filed 5 complaints to the State on the Harrison County Board of Education (which ended up actually being 7 complaints, per the State). My letter to the state, as follows:

Dee Bodkins, Director

WV Department of Special Education

Building 6, Room 304

1900 Kanawha Blvd, East

Charleston, WV 25305

August 10, 2007

Dear Ms. Bodkins,

Please let this letter serve as five (5) formal complaints in regards to my daughter’s educational services.

My daughter’s name is Faith Smith and she is enrolled in the Special Needs classroom within Nutter Fort Elementary School. Her disabilities include Agenesis of the Corpus Callosum, Hydrocephallus with a VP Shunt, Grand Mal Seizure Disorder, and Hypotonic Disorder. As mentioned, she suffers from seizures which can come without warning and can become a health risk. She also receives special education services from the Vision Impaired teacher. To my knowledge there are approximately twelve (12) students in the classroom, with one (1) teacher and two (2) aide.

As stated in her IEP, Faith requires hand over hand assistance for all educational activities, as well as total personal care. Faith does not initiate anything and depends on someone else to direct her, physically and mentally, to the activity being presented. All of her services are provided in a special setting, due to her great need for assistance. I do not disagree with her IEP. In fact, I believe it is well thought out and is appropriate for my daughter. (Complaint #1) My disagreement is that I believe there is no way the current staff can offer quality educational services to Faith for six (6) hours a day as she is entitled. In the 5/17 IEP meeting, the teacher stated that Faith is placed in the prone stander and she frequently falls asleep while there. They do not interact with her during this time. They also stated that she sleeps in her wheelchair at different times of the day. When questioned, the teacher admitted that those were times when the staff was busy with other students.

Faith does not sleep on and off during the day when she is at home, or when she is at the sitters. She typically, when feeling well, only takes one (1) nap per day for approximately 30-45 minutes. There is no medical, behavioral or physical reason why Faith would sleep more than this, other than boredom and lack of initiative.

At the 5/17 IEP meeting, we once again requested a 1:1 aide to be assigned to the classroom to assist Faith. There was no representative from the Board office at the meeting but Mr. Gorrell, the principal of Nutter Fort Elementary School, flatly refused consideration of an additional aide. He stated that he was not going to allow any further people in the classroom. He also stated he was not going to ask the Board Office, because he stated that they would tell him to move around his existing manpower rather than they fund another position.

I have included a copy of the 5/17 IEP. Faith’s father and I refused to sign it because of the disagreement and we were first told that Faith would not receive any services at the school until we did, then we were told that it didn’t matter – our approval was no longer required and they could and would do as they wanted with my daughter’s educational services. (Complaint #2) They then convened another IEP after the 5/17 date, without an 8 day notification to us. After receiving notification of this (via mail), I immediately contacted the school and advised Mrs. Hilton (teacher) that the meeting was not to take place. I advised her that we were not given appropriate notification and it would need to be rescheduled so that we could attend. I then called again the day after the meeting was supposed to take place, (Complaint #3) to find out that the meeting was held anyway, regardless of our consent. It is my understanding that several representatives from the Board Office were there, but I do not have any specific information as to what was accomplished at that meeting, nor how it affects my daughter’s education as a copy of that IEP was never sent to me.

(Complaint #4) Also at the ***5/17*** IEP meeting, I requested an IEE (Independent Educational Evaluation) and was given no information as to how or where to go. I based my request on my belief that Faith’s IEP as written cannot be appropriately implemented in a classroom so large, with so many severe and individualized needs with so few staff to attend to the needs of these students.

(Complaint #5) There was at least one episode last year when staff failed to administer Faith’s seizure medication. They said they were just so busy, they had forgotten. When confronted with this, Mrs. Hilton (teacher) advised me that she was sorry but couldn’t guarantee it wouldn’t happen again. While this incident occurred in the beginning of the school year (September 30, 2006), I chose not to file a complaint at that time as I was concerned about the consequences the children may have to face if the aide were to be terminated or suspended; the classroom wasn’t staffed enough the way it was. I did however file a complaint after the school year. I contacted the Board office and spoke to Angie Carvelli who advised me of the paperwork I needed to complete. After completion and filing of the proper paperwork, I was advised by Ms. Carvelli that this would be a citizen’s complaint not a special education complaint. I didn’t understand this, as Faith’s medication is in her IEP and on file every year via her Medicine Administration Form. After the complaint was filed, I was contacted by a Board representative that my complaint was dismissed as it was after the ten (10) days of occurrence that the citizen complaint must be filed.

Please advise me what I need to do to move forward with this. Now that the new school year is fast approaching and I need to feel that my daughter’s health, well-being and education are seriously being considered for the school year 2007-2008.

Sincerely Yours,
Lori Bailey

I post this letter in hopes that other parents will take such steps to see that the School Board's failure at Special Education are brought to attention. I received the results last week, and they are as follows:

Allegation 1

Has the district proved the parent the required notification of the Individualized Education Program (IEP) team meeting?

Conclusion

Policy 2419:Regulations for the Education of Students with Exceptionalities, Chapter 5, Section F, requires the district to provide written notice to the parents no less than eight (8) days prior to the meeting unless waived by the parents. In addition, the district is required to take steps to ensure one or both parents attend or have an opportunity to participate in the IEP team meeting and document its attempts to arrange a mutually agreed upon time and place for the meeting, such as video and telephone conferencing in the place of physical IEP meetings if the parent and district agree. If the parent refuses to attend or the district cannot convince the parent to attend, the district may conduct the IEP team meeting and provide prior written notice of the decisions made at the meeting.

Documentation and interviews confirm the district scheduled the IEP team meeting with the parent by telephone on May 30, 2007 and provided the notification in writing on the same date, which was seven (7) days prior to the IEP team meeting. However, no documentation was submitted to verify the parent waived the required eight (8) day notice. Subsequently, on the day before the meeting, the parent telephoned to cancel the meeting, as she was not able to participate in the meeting on that particular day. Nonetheless, the district convened the meeting in the absence of the parents without offering to reschedule the meeting at a mutually agreed upon time or providing any alternatives to a physical meeting as a means to obtain their participation. Therefore, violations occurred.

Allegation 2

Has the district provided the parent an opportunity to participate in the IEP team meeting?

Conclusion

See Allegation 1

Allegation 3

Has the district considered the parent’s request for a one-on-one aide for the student?

Conclusion

Policy 2419, Secion 5.1.3, requires the IEP team to consider the strengths of the student and the concerns of the parents for enhancing the education of their child. In addition, Section 8.1.1, requires the district to provide prior written notice to the parent of an exceptional student within a reasonable time before the district proposes or refuses to initiate, or change the identification, evaluation, or educational placement or the provision of a free appropriate public education to the student. The notice must include:

a) a description of the action proposed or refused by the district, and explanation of why the district proposes or refuses to take the action, and a description of any other options the district considered and the reasons those options were rejected;

b) a description of each evaluation procedure, test, record, or report the district used as a basis for the proposal or refusal;

c) a description of any other factors which are relevant to the district’s proposal or refusal;

d) a statement that the parents of the student have protection under the procedural safeguards or the means by which a copy of the procedural safeguards can be obtained; and

e) sources for the parents to contact to obtain assistance in understanding the provision of the procedural safeguards.

Documentation and interviews confirm during the May 17, 2006 IEP team meeting, the district considered and refused the parents’ request for a one-on-one aide for the student and made the decision to provide the same support as specified in the previous IEP. Accordingly, the district provided its proposal/refusal in writing in the form of prior written notice on the same day as the IEP meeting. Therefore, with regard to the districts consideration of the parent’s request, no violation occurred. However, the notice did not include a description of each evaluation procedure, test, record or report the district used as a basis for its refusal. Therefore, the district’s justification for its proposal/refusal was not substantiated on the prior written notice, and a violation occurred.

Allegation 4

Has the district provided the parent a copy of the IEP?

Conclusion

Policy 2419, Chapter 5, Section 2.M, requires the district, following an IEP team meeting, to provide the parent a copy of the IEP. Additionally, Chapter 10, Section 3.B, requires the district, when the parent does not attend the meeting or disagrees with the IEP, to provide prior written notice at least ten (10) days prior to implementing its proposed action or within ten (10) days of its refusal.

Documentation and interviews verify the district convened an IEP team meeting on June 6, 2007 without providing the parents appropriate opportunities for participation. Documentation and interviews verify the team reviewed the May 17, 2007 IEP and documented the results of the meeting on a Memorandum of Conference and through prior written notice, which were both provided to the parents within ten (10) days of the meeting and again on June 13, 2007 at the parent’s request. Furthermore, no documentation was submitted by either the parent or the district to verify that chances were made to the IEP during the meeting. Therefore, the parents were provided copies of the Memorandum of Conference and the prior written notice within the specified timelines, and no violation occurred.

Allegation 5

Has the district provided the student an Independent Education Evaluation (IEE) at the parent’s request?

Conclusion

Policy 2419, Chapter 10, Section 7 provides the parent the right to an IEE at the public expense if he or she disagrees with an evaluation obtained or conducted by the district. The parent has a right to an IEE at his or her own expense at any time. Furthermore, Section 7 requires the district to do one of the following within ten (10) days of the parent’s written request for an IEE:

· agree, in writing, to pay for an IEE at reasonable and prevailing rates, and provide the district’s IEE criteria and information about where an IEE may be obtained;

· offer WVDE mediation to try to resolve differences. This is only available if parents agree to mediate; or

· request a due process hearing to show the district’s evaluation is appropriate.

Furthermore, Chapter 3, Section 1.C, requires additional evaluations requested by the EC or IEP team to be completed and an EC or IEP team meeting held within sixty (60) days from the receipt of parental consent for the identified evaluations. The request for parental consent must be sent within ten (10) school days of the EC or IEP team meeting from which the evaluations were requested.

Documentation and interviews confirm the parent did request further evaluations for the student at the May 17, 2007 IEP team meeting. However, the district failed to document the requested evaluations on the IEP and obtain the required parental consent. Therefore, a violation occurred.

Meanwhile, in an attempt to correct the violation, the distrect met with the parent on September 14, 2007 to determine the evaluations necessary to conduct a comprehensive assessment of the student and obtained parental consent.

Allegation 6

Has the district implemented the student’s IEP with regard to the administration of seizure medication?

Conclusion

Policy 2419, Section 6.1, requires the district to provide the special education and related services necessary to implement the student’s IEP. Documentation and interview confirm the IEP’s did not include medication administration for the student. Therefore, no violation occurred.

Allegation 7

Has the district provided adequate staff for the student’s classroom?

Conclusion

Policy 2419, Section 6.1.3, requires the district to provide qualified personnel with the training and skills necessary to implement the IEP of each student assigned to them. In addition, Section 9.1.3, requires the district to provide qualified staff, who are appropriately trained and adequate in number to implement these regulations. Furthermore, Section 6.1.5, requires the district to assign no more than twelve student with mild mental impairments with a full-time aide and eight students with moderate and/or severe mental impairments to a separate class combination program with a full-time aide.

Documentation and interviews verify the teacher’s caseload documents eight (8) students with one (1) teacher and two (2) aides. Therefore, the district provided adequate staff for the classroom, and no violation occurred.

___________________________________________________________________

I've typed out this verbatim in hopes that there may be other parents out there who are undecided if filing a State complaint against the School Board is worth it. This proves it is. While they weren't found in violation of ALL allegations..... 4 out of 7 isn't bad. All the info you need is here.... the address, the Director and laws of which the BOE has failed to comply with in regards to my daughter's special education needs. Please feel free to use this info to your benefit or if you have any questions that I may be of some help with, please don't hesitate to post a comment or email me directly at Lori@crusadeforfaith.org

The School Board must also take corrective actions to the allegations found and report those corrective actions back to the State.... and yes, they are on deadlines. They must provide this required corrective actions in writing with copies of what they failed to provide us with from the beginning.

Maybe this will make the Board realize that we will NOT sit back quietly while they determine the fate of our child's education.

In closing..... on your toes Harrison County BOE, there are eyes watching you and you are walking on thin ice with many parents in this region. Our children will come out victorious in the end..... the State will see to that.

Bad New for them.... possibly GREAT news for us!!!!

2007-10-14T22:20:00.001-05:00

No Boundries

2007-10-14T20:13:00.001-05:00

1st Annual "Crusade for Faith" Car Show

2007-08-26T06:40:00.000-05:00

Just wanted to announce that it's been confirmed on the date and time for our car show.

When: September 29, 2007
Registration Fee: $15
Dash Plaques to the first 30 registered
Trophies in many categories
No cost to come to the show, but donation jars will be set up if you would like to contribute.
Time: Registration 10am-noon
Show Time noon-3pm
Where: Horizons Church
Directions:
From Clarksburg/Bridgeport take I-79 south to exit 110 at Lost Creek. Take the first left onto Rt. 25 (Mt. Clare Road, opposite the state road facility). Continue for 1/2 mile and turn left

From Weston take I-79 north to exit 110 Lost Creek. Turn right at the end of the exit ramp. Go to the stop sign and turn left. Go 3/4 mile and turn right onto Rt. 25. Continue for 1/2 mile and turn left

We'll also be having a "Paper Plate Special", as well as cookies, brownies, and refreshments.

Tickets for door prizes and music for one and all to enjoy.

Hope to see you on September 29th at the CAR SHOW!

Crusade for Faith Car Show

2007-08-16T08:48:00.000-05:00

I'm in the process of looking for a place to hold our first car show. I've narrowed it to Sept 8. I'm waiting on the application to fill out for Nutter Fort park, this way we can get a pavilion and do our bake sale from that as well as have a place where people can sit and eat. I've emailed a few folks regarding "entertainment" (a band and a group of cloggers), hopefully I'll get something positive from them. I'm getting excited.

More updates as they come....

Social Security Frustration

2007-08-14T11:19:00.000-05:00

I applied for SSI benefits for Faith back in May. I got a letter today telling me that the claim has been denied. Why? We make too much money. Unbelievable. I mean this money was going to be put back for Faith and her future..... just because we make too much money that should effect that? I just don't get the Government. This little girl will be disabled for the rest of her life, but yet they deny benefits because of income.

I'm livid. Absolutely livid.

My Biggest Fear

2007-07-26T08:06:00.001-05:00

I recently read this article in the news....... it sickens me to even see this man alive, let alone walk away in cuffs. That isn't justice.......

Respiratory therapist Wayne Albert Bleyle was in New York state on a wintry day when investigators called him about allegations he had molested patients too sick to defend themselves.

When they asked how many children he molested, investigators said, he looked out his window and asked, "How many snowflakes are there out there?"

On Wednesday, Bleyle didn't turn to look as a succession of parents and family members of victims spoke at his sentencing hearing. Some wept; others shook with anger.

As part of a plea deal, Bleyle, 56, was sentenced to 45 years and eight months in prison for molesting five of his young, disabled patients and for taking pornographic photographs of others. Prosecutors said he targeted those who were comatose, brain-damaged or too disabled to talk.

"You have violated the trust of your patients, you have violated the trust of your employer, and you have inflicted indescribable anguish on your victims and their families," Superior Court Judge Kenneth K. So told Bleyle.

Bleyle, who told investigators he molested as many as half the children he treated in his ten years working in the convalescent ward at Rady Children's Hospital in San Diego, stared straight ahead or cast his eyes down at the table in front of him as victims' relatives spoke.

"I just want you to know it doesn't matter what you say or how many years you spend in jail - it's not going to be enough," Lillian Godfrey, whose daughter is now dead, told Bleyle. "I don't think you have a soul. You're just an empty human shell."

Prosecutors said the extent of Bleyle's molestation will never be known because he targeted patients who were comatose, brain-damaged or too disabled to speak.

He was arrested last year after investigators tracing pornography through the Internet found tens of thousands of pornographic images on his computer, including photographs he took of himself abusing his patients.

He allegedly confessed to investigators in March 2006 when they reached him by phone in New York state, where he was visiting relatives. When he was arrested, he was living in a trailer in a casino parking lot because his wife had kicked him out of the house.

Bleyle worked at the renowned Rady hospital for 25 years, the last 10 at the convalescent home, where the most disabled patients live. The 59-bed convalescent hospital treated 176 patients during Bleyle's 10 years working there.

"He wishes to apologize to all the victims and their families," said his attorney, Casey Donovan, who noted that Bleyle himself had been sexually abused as a boy. "He knows he can never make amends for what he has done."

Investigators identified just four of Bleyle's victims: three girls and a boy who were all younger than 14 when the molestations took place. Two of the children have since died. Investigators were never able to put a name to one of the victims, a 2-year-old girl found in pictures.

Janice Frost, whose 10-year-old daughter died in June 2006, three months after investigators discovered her image on Bleyle's home computer, called it a "parent's worst nightmare." Frost said her daughter was under Bleyle's care from the time she entered the long-term facility as a 10-day-old newborn suffering a brain condition. "During her dying moments, I told her I would see this through," Frost said outside the courtroom, as she clutched one of her three older daughters.

Bleyle faced up to 165 years if he had been convicted on all counts in a jury trial. Prosecutors said they made a deal in part because they were anxious to spare one of Bleyle's victims, a teenage girl who claimed Bleyle inappropriately touched her buttocks while she recovered from a stroke, the strain of testifying before a jury.

Bleyle's arrest prompted the hospital to ban cell phones in patient treatment areas, including rooms, and require doors and curtains around patients be left open most of the time, said hospital spokesman Ben Metcalf.

In court, Pandora Johnson said she had asked her son, who cannot speak because of a breathing device in his throat, whether he had been abused. "He didn't give his usual yes or no sign. He just looked afraid," Johnson said. "And when I said, 'Wayne will never do this to you again,' he gave me a big smile. That smile broke my heart."

Question Answered

2007-07-12T17:57:00.001-05:00

I had a comment post on the blog and thought that I would touch base with it here in the open, as I do believe it's a legitimate question and one that I would be more than happy to answer.

The commenter asked what the funds from our events will be used for.

A lot of times special needs children require certain equipment (IE: walkers, wheelchairs, special strollers, etc) that the insurance companies may not provide. The insurance company may pay a "portion" of the cost, but will not cover 100%. This is where we hope to help. The last stroller purchased for Faith cost over $2000. While we were lucky in that case, there are some families that are not. They have to pay a portion of that cost out of pocket and these families have enough expense to deal with besides the fact of having to come up with 25% (with the $2000 stroller, that would be $500) of the cost.

Not only are we looking to help with mobility equipment, but also equipment that I first hand know the insurance company WILL NOT pay for. We're talking about adaptive and assistive technology for motor skills, as well as speech.

We even hope to one day have enough to help provide families with funds for legal defense. Unfortunately there are many times when it comes to that extreme, to obtain a lawyer to fight in court to see that your child receives the education he/she deserves. This is also out of pocket expense for these families. Folks put a lien on their house, obtain a loan from a bank.... anything to fight for their child. It's a sad fact, but one that many of us face.

Thank you for your question reader.

Someone I Love

2007-06-30T13:28:00.000-05:00

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.
___________________________________________________________

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"

2007-06-28T18:11:00.000-05:00

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.

_____________________________________________________________

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"

2007-06-23T15:01:00.000-05:00

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

2007-06-17T06:25:00.000-05:00

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

2007-06-12T19:13:00.001-05:00

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

2007-06-09T08:11:00.000-05:00

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

2007-06-07T21:41:00.000-05:00

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

2007-06-04T17:31:00.000-05:00

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

2007-06-04T09:09:00.000-05:00

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.

The Crusade

2007-05-26T15:53:00.000-05:00

I cannot believe that this has taken off the way it has. The t-shirts alone were a blessing from God, I never could have ever even imagined something that huge happening for us. And folks are being so supportive saying that they'd provide covered dishes for the after ride.

I'm really glad I'm off on Monday as this will give me a chance to hand out flyers. Faith will be with her Daddy so I should be able to get a lot handed out on Monday. Unfortunately I probably won't be able to make a lot of contact by phone, but hanging up flyers and going to Wal-Mart parking lot to stick flyers on the bikes in the parking lot is something I'm excited about doing. Word gets around quick with those guys. We're going to the local hang out on Thursday (bike night) to hand out flyers there. That's going to be exciting as well.

The site is being updated with a slideshow of pictures, that's going to be really cool. Unfortunately we've not recieved much feedback from the visitors to the site, hopefully that will change soon. I'd love to hear from people!

So we're off to the beginning of an exciting ride!!!

I Am The Child

2007-05-20T16:55:00.000-05:00

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater, for I cannot express
myself or my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and
repeated. I do not give you answers to your everyday questions, responses over
my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable... Instead I give you opportunities.
Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.

I drive you further than you would ever go on your own, working harder, seeking
answers to your many questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom. Oh! I've dropped my fork again.
I am dependent on you in these ways.

My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick...What I do know is infinite joy in simple things. I am not burdened as you are with the strives and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving.

Most of all, I teach you hope and faith.

I am the disabled child.

Author Unknown

Heaven's Very Special Child

2007-05-20T16:19:00.000-05:00

A meeting was held quite far from earth,
"It's time again for another birth,"
Said the angels to the Lord above,
"This special child will need much love.

Her progress may seem very slow,
Accomplishments she may not show,
And she'll require extra care
From the folks she meets way down there.

She may not run or laugh or play;
Her thoughts may seem quite far away.
In many was she won't adapt,
And she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please, Lord, find parents who
Will do a special job for you

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for this gift from Heaven.
Their precious charge so meek and mild
Is Heaven's very special child."

Fight for the Right

2007-05-19T14:51:00.001-05:00

A lot going on these days. We have decided that arguing with the Board of Education every year for Faith to have a 1:1 aide isn't working. So we've decided to take things a bit further.

We are in the beginnings of a "Ride for Faith" poker run which will hopefully take place within the next month or so. Joel is currently working on a website for Faith and what the special needs children struggle with on a day to day basis in the school system. That web address will be www.crusadeforfaith.org ; please visit it often for updates and events.

As I said, we are just in the beginnings of this and any suggestions, support, or sponsors we can get for this cause would be wonderful.

It's time that someone step to the plate and voice for these children whom cannot voice for themselves.

Yup, this is my guy!

2007-04-29T20:34:00.000-05:00

Tooth Fairy

2007-02-16T23:59:00.000-05:00

Faith lost another tooth this week. This time at school. I'm excited to see this one come in as she's been sporting, as Papaw calls them, Chiclets for the longest time. I hadn't realized how long it takes for baby teeth to come out. She lost her bottom two about a year or more ago. Then her two front a good while ago and now she's just lost the one to the right of her big girl tooth. I'm not sure, but I think it's kind of strange for her to chew. I noticed tonight that she seems to favor that side and she hasn't gotten used to no tooth being there to help break up the food. She gagged a bit when I fed her this evening, but I think it's because maybe it's because she's used to the food being more "chewed" and now that tooth is missing perhaps she's not able to chew it up as well.

All I know is Mommy's little girl is growing up too fast.

One of Faiths big steps at Daddy's house

2007-01-12T03:41:00.000-05:00

Today she and I were sitting on the floor when I noticed Faith wanted more toys to play with,so I have been working with her to reach into her toy box to get the toy she wants. I told her she can do it,when she rolled over to the box she looked at it for about 30 seconds then she grabbed the box tilted the box over and started going through the toys it was so amazing to watch her be so independent. Of course I went crazy to see her do this! I loved and kissed on her for awhile after that to let her know that what she did made Daddy so proud and wished her Mommmy could have seen it. Faith is one of a kind ,she loves to show people love and really loves receiving it too. I know her mother and I show her so much love ,because Faith was given to us for that reason,she would always be loved no matter what.

2006-12-23T23:42:00.000-05:00

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Photos

2006-12-06T19:28:00.000-05:00

Newest Pictures of Faith:

A case where "Sorry" isn't enough.....

2006-09-30T11:19:00.000-05:00

So here's the update on the missed meds.

I drop Faith off at school the next day and there's a lady, whom I've never seen, bringing Faith's wheelchair to the door. I see someone sitting on the bench inside, I couldn't tell at the time who it was.

At this point they had no idea about the missed meds.

So the lady pulls the chair to the front of my car and I asked her if she was replacing Dee (the teacher) today, she said no that she was an aide out of one of the other classrooms. She talked to Faith and commented how pretty she looked and joked that she would have to borrow some of her clothes. We shared a little laughter. So I asked her if Dee was there today and she said yes, but that she was already down in the lunchroom. I told her that I needed to speak to someone that was normally in Faith's class. She said that Lisa (I believe that's the name she said) was inside. So I walked in the school behind her and "Lisa" was the aide that I dropped Faith off to the day before (better known as "the missed meds day" 9/27/06).

So I asked "Lisa" if Faith had eaten breakfast the previous day (if they didn't give her meds, I had to wonder if they had even fed her). She said yes, she had eaten breakfast. My next question is who fed her. She said, "Well, let me think....ah yes....I did." OH MY GOD!! She had think who fed Faith?? When she was the one that fed her?? Ya just gotta wonder, ya know? I then said, "Well, we have a major issue...". She gazed at me with a blank look on her face. "....because Faith didn't get her meds yesterday morning." I literally watched this woman's jaw drop. There were two other staff members in addition to "Lisa" and the aide that had Faith standing in the hall as I confronted her. I then explained to her how I had gotten in Faith's backpack to put in her meds for the next day and found that there was a dose left in there. I then made it a point of the hour that I spent on the phone back and forth to Tim trying to find out if Sheri had put the pills in and also made sure she knew that I had to have Faith's neurologist paged at 10pm to find out what I needed to do to ensure that Faith didn't have a seizure because of her low count.

Her response?
"Oh Ms. Smith, I'm really sorry".

My respose?
"Well, while I can appreciate your apology, that doesn't erase the fact that Faith's meds were not administered as directed. You have to give Faith medication ONCE a day DURING breakfast, how hard is that to remember? This medication is crucial. We are lucky that Faith didn't go into a seizure and ya know, I just gotta wonder even if she had...would have anyone noticed? Typically when Faith has a mal seizure it's so severe that this little girl has to be taken into the ER and adminstered Phenobarbital thru an IV. So again, while I can appreciate your apology you obviously understand why I'm so upset."

I left. I needed to before I got angry. I was hurt and felt that her "sorry" didn't even measure up to what I felt needed to be done. I kept very calm and actually when I look back at it, I'm very proud of myself because I'm gonna tell you that I was ready to explode inside. As I pulled away from the school, now late for work, tears were rolling down my face uncontrollably.

I find out later that this staff member that missed giving Faith's meds was the registered LPN.

WHAT???!!!?!

This is bad...very bad. Something has got to give here. While our children are in school it IS the facitlity's responsibility to take care of them as we would. Some children, such as Faith, take a bit more care and attention. Ya know....not having enough staff to see that my child is properly taken care of is NOT an excuse, nor will it be accepted. They think we're asking too much when we stress the importance of Faith needing a one-on-one aide, not only that it will further Faith's learning and development to have that attention but this situation would not happen again if one person would have one responsibility....and that being Faith.

No, I don't think it's too much to ask that my little girl be safe and taken care of while in school. I trust them to see that this is done while she is out of my hands...it IS their responsibility. If something was done to their child while in the care of someone else, wouldn't they expect the same?

The fight for Faith, and now what I feel has been jeopardized..her safety...will turn even stronger.

TV, radio, newspaper, Senators, Lawyers....whatever it takes.
Sad, isn't it?
"Normal" children don't need to go through this to see that they get a proper education and ensured safety.

Not being fair is an understatement.

The War Begins

2006-09-27T22:37:00.000-05:00

Well, it took a lot less time than what I thought...besides the fact that I didn't think it was going to be anything THIS major.

Get this.

So, every night before bed I give Faith a snack (usually something like a Little Debbie cake) to take her meds with. It's easier and more tolerable if it's sprinkled on some food. When I do this routine, I also take the pill bottle out of her school bag andgo ahead and put in her meds for the next morning. So I get in the school bag and fish out the bottle. As I take it out I hear, what I think, is the empty capsules (her meds are capsule pills that are opened and sprinkled over her food). I was stunned to find out that it wasn't empty capsules at all, but the dosage she was supposed to have taken with breakfast....at school.

I don't want to freak out just yet. There was a possibility that Sheri (aunt/babysitter) could have put in the dosage for the next morning. Even though she NEVER did this....maybe, just maybe.

So I call Tim at work. I tell him we have an issue and then go into explanation. He said he would get in touch with his sister and ask. In the meantime I get to thinking...ok, what do I do if it wasn't given. I mean, if it were then heck...things are all good. I've never had a complete dosage skipped before...given late, yes....but skipped? Hell no. So I call the hospital to see if they have Dr Gingold (Faith's neurologist) on page. She said yes. I give her my number and wait for the call. In the meantime, I call Tim from my cell to see if he had heard from Sheri yet. He said that he had to leave her a message and he should hear something from her no later than 10:30. While on the phone with him, Dr Gingold calls the house phone. She tells me instead of giving Faith's regular dosage and the entire dosage missed, to half the missed dosage and give it with Faith's normal dosage for night. Sounds confusing, but I understood what she was saying. So Tim, still being on the phone, overhears all this and says that I should hold off on giving her the additional till we find out for sure that Sheri didn't put the pills in her bag. He's tolerable when he thinks.

15 minutes later he calls back to inform me that Sheri DID NOT put those pills back in her bottle.

Oh yeah....the war begins and we're about to go in with loaded ammunition.

Daddy's Town Fair

2006-09-17T09:11:00.000-05:00

Not much has happened in the way of the school board lately, of course we haven't scheduled her IEP meeting yet. I suppose once that's done and over with there will be a blog entry 5 miles long. I'm so sick of fighting.

So yesterday after dropping of Faith to her Daddy, I run over to Family Dollar to pick up some "must haves" and actually found quite a bit of "don't neccessarily need, but want" and decided to live on the edge and pick those up. I needed something to do till I had to make the drive to Pittsburgh. Hey, that's what happens when he (Joel) goes out of town and leaves me here all alone. I do the obvious......blow money.

So I'm browsing the store and my cell phone rings "Dueling Banjo's", the ringtone I have set for Tim....ummmm, what other ringtone would I apply to him? Fits perfectly. So, I pick up and he says to me, "You'll never believe what Faith and I just did!". I was a bit wierded out by him calling just to give me the latest scoop on his day, but I played along. My comment was, "Ok, I'm scared...but what?". His response? He says, "Faith and I just took a ride on a helicopter!". Faith's been on a helicopter before, not sure if she remembers anything as she was flown out because of seizures. He said she LOVED it! That's so funny. My little rebel. Now me? There ain't a million dollars.....well, I dunno...let's go a bit lower when talking cash, eh? You couldn't give me a hundred dollars to get on an airplane OR especially a helicopter. Now see, that's where Faith and I share something. I was life flown to a hospital back in '92 as a result of a car accident, but I don't even remember the accident let alone the helicopter. Nope. I'd HAVE to be unconcious to fly.

Anyways, Lost Creek (the town Tim lives in) was having their wonderful annual hillbilly ho-down yesterday and I suppose they were giving helicopter rides. I dunno. I try not to think of everyone in that town in one place at the same time. It scares me. I had to go to that friggin thing year after year and the visual memories are haunting. Well....maybe not that bad, but you get the idea.

Big Girl

2006-09-09T12:42:00.000-05:00

Well it seems as if Faith is going thru a "growing spurt". She's growing into a young lady very fast. It's funny to sit and watch her. She knows more of what's going on around her then what a lot of people think. She's amazing. And God it takes my heart to watch her. She is such a happy little girl. Yesterday when I picked her up from her Daddy and she saw me she got so excited and started waving those little arms in the air! Warmed my heart to see how happy she was to see me.

She loves her music too, I have to say she definitly takes that after me. Her new favorite is "London Bridges" by Fergie. Yeah, that's my girl...my lil hip hop queenie!! She, of course, will always love Nickleback and Rascal Flatts. Ah yes and let's not forget Alison Krauss. My lil music mama.

I can't even begin to imagine having Faith any other way. I wouldn't change a thing about this little girl. So she doesn't walk, she doesn't run and chase the cat, she doesn't say "Mommy", or she doesn't say I love you. But to see her eyes and to watch her, I don't need to hear those words. And when...if...those words ever slip from her lips then of course I would be happy. But if not...I'm fine with the way this wonderful little girl fills the hole in my heart.

So the fight begins....

2006-08-23T16:27:00.000-05:00

Ok, I can no longer do the "on behalf of Faith" writing. I will write in MY words, from MY point of view ON Faith's behalf. Sorry, but today has been one of the first, of many, days that irritate me to no end.

So moving....ya know. Moving sucks anyway. I mean you gotta pack up all your crap, crap you probably forgot you had, and load it to unload it and then put it all back up again. I think it would be real neat if they had "ready to move in" places where you didn't have to move a single slappin thing. You just moved and everything you need, and liked, was already set up. Eh, wishful thinkin' I suppose. Anyways, so we're moving. Moving from one city to another.

So I go to Nutter Fort today (the 1st school Faith ever attended, which she left 2 yrs ago) to enroll her. The principal is awesome. He's a former Marine Sergeant so he looks rough, but his heart is pure gold. I know, I've seen this man practically in tears...it was heart-wrenching. Anyways, I go in and ask if he wants Faith back and he immediately smiles. I explain to him that we're moving back to Clarksburg. He asked where. I told him. He said that wasn't his area and that I needed to talk to the principal over at North View to sign the transfer papers and then set up and IEP meeting before she can actually attend Nutter Fort. Fine. Now mind you, Monday is the first day of school. I know...procrastination...but I assumed transfer papers would be the only thing I needed to do. So I head to North View. Nobody's there. I'm looking around the building and there are steps everywhere. There is absolutely no way Faith can even get into this school, let alone the fact that the Special Needs classroom is located on the 3rd floor. Granted they have an elevator, but what if there's a fire?? There's no way she can be carried down 3 flights of stairs. So at this point, I'm kinda freakin out. I mean I have got to get some answers...TODAY!! So I'm done. I will go right to the source...the BOE itself. Hell they are gonna have to help me there, right? I dreaded this. I have not had one good experience with these people yet so I had a feeling my day was going to do nothing but go downhill. I even called Joel to "warn" him that the next call he gets from me might be from the Harrison County jail. Yes. That bad.

So I walk into the BOE building with my boxing gloves on and since there's no receptionist downstairs I just picked a floor. 2. That's always been a good number (process of elimination, really. There were 3 levels, I picked the middle). So I tell my story to the "fill in" secretary and she picks up the phone to call Mr Yedneck. No answer. Calls Miss Media (oh buddy, her and I have clashed in the past) and she pretty much tells her (not knowing the specs on the situation and not having a clue it's me) that I needed to do the transfer between principals. So another gentlemen overhears me freaking out and asks me if he could help. Well, before I even got 2 words out a lady steps out of a nearby office and he intros her and I. So...I start my story again. Before I got a sentenance out a gentleman steps off the elevator and she interrupts me to intro me to him. At this point I felt like I was just being "pawned" off to any passer-by. I met John Babyak (do you hear the choir and see the halo yet?) and he immediatly takes me upstairs to his office. Sits me down and asks my story. So, from the beginning I tell him. His response? Immediatly picks up the phone to call remarking how there's no way that Faith can go to North View without it being handicapp accesible. Wow! So, he makes several calls and to get to the point of the matter...this man made it happen. He brought down Miss Media into his office and pretty much said "Make it happen". It was amazing. I was so shocked about how smoothly things went, actually I was a bit frightened that the end was near. So I got his card, thanked him (with tears), and made sure that he got a picture of Faith. I mean this man didn't only make it happen, but he truly acted like he cared and was interested. He didn't approach the situation as Faith being another statistic. It was awesome! Justice for Faith!! Yayyyy!!!

So, the first battle has been won. But I know the first battle is the easiest, so the fight begins.

Ouch

2006-08-20T11:06:00.000-05:00

Ok so you'll learn as these posts start that things that are "normal" for most kids are a big deal sometimes for me. Here's an example.

Yesterday I was at mommy's and she had me on the couch changing my diaper and brushing my teeth. Daddy pulled up so she left me on the couch to get up and run to the door to tell Daddy that it would be just a minute. I guess when I tried to get up my hand slipped off the couch and I landed upside down right on my head. Mommy and Joel (mommy's fiance) ran over to me and quickly snatched me up and sat me on the couch. Mommy was freaking out and then Daddy heard me crying hard (I don't cry very often so usually when I do, there's something wrong). Mommy and Daddy held me and calmed me down. Mommy walked me out to Daddy's truck and everything was fine.

Later Mommy called Daddy 3 times to make sure I was ok. Daddy kept telling her I was fine but it's when things like this happens that everyone freaks out. I'm a little tougher than what most people think, but I guess they worry because of my shunt and stuff. Heck I'm a tough little girl. Mommy tells me to keep that up so I can beat up any boys that try to kiss me. Course I think if any boys ever try to kiss me then Daddy would step in. Oh gosh, I'll never have a boyfriend with these two!!!

Sweet Faith

Long Time

The Word "Retard"

Uncle David

My little 9 yr old

Website

State Complaint

Bad New for them.... possibly GREAT news for us!!!!

No Boundries

1st Annual "Crusade for Faith" Car Show

Crusade for Faith Car Show

Social Security Frustration

My Biggest Fear

Question Answered

Someone I Love

Another "Commenter"

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

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

The Final Countdown

A Mother's Freedom

IEP

Direct Violation

Truth and Consequence

Correction to blog entry 9/30/06

Sponsors

The Crusade

I Am The Child

Heaven's Very Special Child

Fight for the Right

Yup, this is my guy!

Tooth Fairy

One of Faiths big steps at Daddy's house

Photos

A case where "Sorry" isn't enough.....

The War Begins

Daddy's Town Fair

Big Girl

So the fight begins....

Ouch