Five Little Pumpkins

David’s class did a wonderful job on their play “Five Little Pumpkins.” David hid safely out of sight so that he could be like a professional narrator. He spoke loudly and slowly—the loudly wasn’t a concern but speaking slowly was. Not only did the preschool children like the play, but the students who care for them seemed to really like the play also. The cookies and s’more treats were a big hit, so much so that I returned home with an empty plate.

Skyline High School pumpkin

We stayed so that we could have lunch with David and he really enjoyed us being there. I must say that school lunches have changed so much since we were in school. You had those large plastic trays and you might have had a choice between two different entrees, but that was about it. David’s school has a Café and their options are amazing. You can choose between fresh made pizza, burgers, custom made subs, chicken sandwiches and much more. No longer are students required to choose between milk and chocolate milk—how about a smoothie? The prices are very reasonable and the food was very tasty.

David, preparing to give his lines

David’s teacher did a great job. The class had run a fund raiser in which the class of 12 students made over 500 cupcakes and put on a play, all in the same week. The class has a life skills class, so the cupcakes were a part of the cooking and kitchen cleaning section.

Ms. Jones, David’s teacher is wonderful! So many teachers have looked for ways to get David out of their classroom when they encounter his issues, but Ms. Jones has spent her energy on ways to help David succeed in her class. She has the same mindset that we have, David has to learn these skills in order to succeed in life and passing him around and to the next level will not serve him well in life.

School Daze

Well, I spoke too soon on my last blog post. The school situation lasted exactly 2 days—yes 2 days. The school that was to work perfectly for David turned out to not be so perfect after all. The problem is David has some rough edges, but is not a tough kid. In fact he is very immature for his age. So when he got to a school that held 18-year-olds that have spent most of their lives fending for themselves, we all began to worry about his safety. The school recognized this the first day so they made some changes on the second day and found they could not give him the safe environment that he would need. So we were back to Square One.

We were then set up to check out another school setting within the district. On first look we had some major concerns, but during and after the meeting we knew this was not the setting that David would succeed in. Some of my concerns dealt with issues that I could not use to keep David from attending this school. One of those issues was the very liberal bent of the teachers. Since it is a small school they don’t have P.E. every day, but one of the days they did have it they picked up trash at the park and when they got back to school they sorted through it to create “art” work about how we are destroying the earth. This is not what I would consider Physical Education. The teacher whose class David would be in didn’t seem thrilled at the prospect of David being there. This, again, I could not use as a reason to keep him from attending there. So at 4:00 am I was on the Virginia Department of Education website to research a way to keep David from attending.

Our front door

The first line of defense was a safety issue. The school is on Main Street and just a few feet from a road that has traffic speeding by all day. The school is set in an old home that is need of repair—the railings on the front porch can’t be leaned on because they are so loose. There is about a five-foot drop from the porch.

My second reason was the educational aspect of the school. No true Physical Education course means no diploma. Also the school hours were 9:00 to 3:00, however due to busing issues the students are picked up between 1:30 and 2:00 which is shorter than the hours required by the Virginia Department of Education. This school also takes one extra Teacher Work Day a month, which means the students are not able to attend the amount of days required by the state.

When I mentioned all these issues with the head of special education it became obvious that something very individualized would need to be done for David. So the request for a one-on-one behavioral specialist that was denied originally—“that is not an option”—would now be requested by the school. David would get a one-on-one and return back into the original high school he began the school year at!

But, as you can imagine this process has taken quite a bit of time and wrangling. So, for the last three weeks David has been attending the second of the three schools after school hours for two hours a day. That meant I was chauffeuring him back and forth each day and he was home for the majority of the day. We have also been in meetings almost daily with a variety of county workers.

Milkman doorbell (outside of door)

This morning we were up bright and early to have another meeting before school began. This meeting was attended by his new one-on-one and David’s school schedule was adjusted to give him a truly individualized school plan. He will attend History in a classroom setting. He will then have P.E. every day (to meet those VA Dept. of Ed. requirements) with a small class. He will have a Life Skills class (they are teaching budgeting right now) and for his math class he will work with a computer teacher and his one-on-one and will be taught on the computer. David works well on the computer and finds it much more quick-paced and enjoys the challange. We have even worked out him joining a club or two during the half hour he gets to school before classes begin (flex time).

We are very happy that we were able to work out all these issues and finally get David back to school. David was more than ready to go back to school and likes his one-on-one.

Milkman doorbell (inside of door)

During all this we had a bit of a health scare for David when I found a lump in his left breast. Since we don’t know a lot of his birth parents’ medical history we were a bit concerned. We had him checked out and though we must watch for any changes we are told it’s not uncommon at his age to develop this.

I promised to show you our new home and haven’t forgotten, I just haven’t gotten any work done lately with David home and all the meetings and paperwork we have done. But I thought I would share a glimpse of our “milkman’s doorbell” from our side porch. It has the sound of an old-fashioned bike bell. Also our front door has so much character that I just love it. We have decorated our front porch with pumpkins and garlands of fall leaves. We even had someone stop in the street in front of our house the other day to get a good look at it.

We have not found a church yet, though we have visited a couple. But we are not in any hurry to commit to one church. We are checking out the options and waiting to see where God would have us to become a part of.

An Outstanding Teacher

We received a phone call from David's English teacher this morning. She had two things she needed to talk to me about. As she was telling me how much David has improved over the last five weeks my mind was dreading what the second thing would be. This was the course for many of my discussions with teachers—the "but...." that would follow. I was very glad to hear that he was progressing well in her class without his one-on-one aide.

The second thing was not a but!! During the morning television announcements they reminded the eighth graders that the money and permission slips for their field trip to Washington, DC, needs to be turned in tomorrow. The problem is that no one in her eighth grade homeroom knew anything about it. All these kids are in special education classes and the information for the field trip had not been given to the special education history teacher. The history teacher that is charge of the field trip is out sick today and no one know where the paperwork is. The teacher who called only knows that the papers and $50.00 in cash are due tomorrow.

I will be taking David to school tomorrow in order to talk to the teacher in charge. I want to make sure all the paperwork is completed properly and that the cash is received and a receipt given. I don't want an excuse down the road that prevents David from attending. I don't know if this was just an oversight or an intentional slight to the special ed classes. I will also be speaking to the office about this issue so that it doesn't happen to others in the future.

I am very happy that David's homeroom teacher has looked out for her students. She has always gone above and beyond what is in her "job description." She has a loving heart and a level head. His one-on-one has also agreed to go on the field trip with David. These individuals are a big reason that David is doing so well.

It really upsets me that the kids who are in special education are often forgotten. This has happened before. One year after buying a yearbook and waiting months for it we found that even though David's picture was taken it wasn't in the yearbook. I went to the parent who was in charge and questioned her. They had forgotten to add the special ed classes. I demanded our money back and then asked her how she would feel if her child were left out. I reminded her that just because they had issues didn't mean that the parents loved them less or that they shouldn't be included in a school-wide publication.

A New IDEA

David and me looking over one of the three rivers

This weekend our family plans were rained out. We had planned on an outdoor family day before the weather turns too cold. Rain was to come as of Friday, so we thought it might be a bit wet, but had not planned on downpours. So we stayed in and I made cold weather food—baked potato soup and pulled pork sandwiches.

Saturday David woke up in the wee hours of the morning (like 3am) and was up for many hours. We all finally got a few more hours of sleep but it was almost 9:30 before David finally rolled out of bed.

Old train station entrance (next to our hotel)

So as Rich and I tried to be quiet, he turned on FOXNews. They began to cover a speech that Sarah Palin was making in Pittsburg about special needs children. I listened with great interest since this is a topic close to my heart. I felt that since her son had not hit the school issues her understanding of special needs parenting would be limited. However, after listening to her speech I think she has surrounded herself with many others, including her sister, who have been able to express the issues that arise from parenting these children.

One of the points she made in her speech is the need for the federal IDEA funding to follow the child, no matter where they move to. We found this to be a major consideration in our family. We actually receive less services in our new home then we did in our old home. And of the services David is receiving, we have fought hard to get every one of them.

Nighttime view of the skyline
taken from the Dusquesne Incline

In our last community the services were readily offered before we needed to ask for them. Many would then wonder why we would move. After coming to the new community we maintained two houses to determine which area would be best for our family. While the old school system had great services for our son that was where the benefits ended. The mental health care was not sufficient for children and the city environment caused David to become more aggressive. We also had less of a support system.

There was nothing we could do about the health care or aggressive environment of living in Northern Virginia. But I knew we had a better chance of fighting a school system to get David services.

We are very glad for our decision since David is growing and accomplishing more then anyone ever thought he would. If David's funding had followed him we could be receiving more services then he currently receives.

David and me at a pizza restaurant

Sarah Palin also addressed the additional concern for long term needs of these children. While all parents have concerns for their children, there is often the concern for lifetime care and services that special needs children may require. We as David's parents are training him in the skills that can help him hold down a job, provide for his needs and sustain a relationship. But we are also preparing for the eventuality that he may always be under our care. However, we have been told by many "professionals" that this is a hope that is unlikely to occur. One doctor even told us, after an eight hour comprehensive testing session, that children with David's issues were either dead or in jail by the time they were twenty. I told this man to never call again, since I refused to just accept his diagnosis.

It was funny that Gov. Palin's speech happened to be in Pittsburg. Several years ago I attended adoption workshops in Pittsburg and was even able to bring my family for this workweek-long event. This past week as I was purging boxes I found the pictures of that week.

I have included Gov. Palin's speech in its entirety below.


Palin's Speech on Children with Special Needs
By Sarah Palin, Pittsburgh, Pennsylvania

"Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I'm grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children's Hospital of Pittsburgh, Autism-link, the Children's Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives.

John McCain and I have talked about the missions he'd like me to focus on should I become vice president, and our nation's energy independence and government reform are among them. But there is another mission that's especially close to my heart, and that is to help families of children with special needs. And today, we'll talk about three policy proposals that are going to help us fulfill our country's commitment to these children: more choices for parents, fully funding IDEA, and efforts to reform and refocus.

Too often, even in our own day, children with special needs have been set apart and excluded. Too often, state and federal laws add to their challenges, instead of removing barriers and opening new paths of opportunity. Too often, they are made to feel that there is no place for them in the life of our country, that they don't count or have nothing to contribute. This attitude is a grave disservice to these beautiful children, to their families, and to our country -- and I will work to change it.

One of the most wonderful experiences in this campaign has been to see all the families of children with special needs who come out to rallies and events just like this. We have a bond there. We know that children with special needs inspire a special love. You bring your sons and daughters with you, because you are proud of them, as I am of my son.

My little fella sleeps during most of these rallies, even when they get pretty rowdy. He would be amazed to know how many folks come out to see him instead of me.

When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose.

And what's been confirmed in me is every child has something to contribute to the world, if we give them that chance. You know that there are the world's standards of perfection, and then there are God's, and these are the final measure. Every child is beautiful before God, and dear to Him for their own sake. And the truest measure of any society is how it treats those who are most vulnerable.

As for our baby boy, Trig, for Todd and me he is only more precious because he is vulnerable. In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed.

Of course, many other families are much further along a similar path -- including my best friend who happens to be my sister, Heather, and her 13-year old son Karcher, who has autism. Heather and I have worked on this for over a decade. Heather is an advocate for children with autism in Alaska. And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students.

Heather and I have been blessed with a large, strong family network. Our family helps make sure that Trig and Karcher have what they need. But not everyone is lucky enough to have that strong network of support. And the experiences of those millions of Americans point the way to better policy in the care of children with special needs.

One of the most common experiences is the struggle of parents to find the best and earliest care for their children. The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need. Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy.

Many of you parents here have been through the drill: You sit down with teachers and counselors to work out the IEP—an individual education plan for your child. The school may be trying its best, but they're overstretched. They may keep telling you that your child is "progressing well," and no extra services are required. They keep telling you that—but you know better.

You know that your children are not getting all of the help they need, at a time when they need it most. The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters. And when our public school system fails to render help and equal opportunity—and even prevents parents from seeking it elsewhere that is unacceptable.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents'. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice—public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective -- because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.

That's why John and I will direct the Department of Education to clarify the statute administratively. We'll make explicit that when state funds are portable, federal funds are fully portable. We're going to make sure parents have choices and children receive the education they deserve.

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act. To his great credit, it was President Gerald Ford who signed the legislation that became the IDEA—establishing new standards of respect and inclusion for young Americans with disabilities. From that day to this, however, the federal government's obligations under the IDEA have not been adequately met. And portions of IDEA funding have actually decreased since 2005.

This is a matter of how we prioritize the money that we spend. We've got a three trillion dollar budget, and Congress spends some 18 billion dollars a year on earmarks for political pet projects. That's more than the shortfall to fully fund the IDEA. And where does a lot of that earmark money end up? It goes to projects having little or nothing to do with the public good -- things like fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark. In our administration, we're going to reform and refocus. We're going to get our federal priorities straight, and fulfill our country's commitment to give every child opportunity and hope in life.

For many parents of children with disabilities, the most valuable thing of all is information. Early identification of a cognitive or other disorder, especially autism, can make a life-changing difference. That's why we're going to strengthen NIH. We're going to work on long-term cures, and in the short-term, we're going to work on giving these families better information.

Once a condition is known, parents need the best and latest information on what to expect and how to respond. This service is also provided for under the IDEA. And we will make sure that every family has a place to go for support and medical guidance. The existing programs and community centers focus on school-age children -- overlooking the need for assistance before school-age.

But it would make a lot more sense for these centers to focus as well on infants and toddlers. This is not only a critical stage for diagnosis; it can also be a crucial time to prepare the family for all that may lie ahead. Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation. As Todd and I and Heather know, there's no substitute for the friendship of those who have been where we are now.

The IDEA is also intended to serve teens and young adults with special needs. And here, too, there is an opportunity to reform and extend the reach of federal support under the IDEA. By modernizing a current law, the Vocational Rehabilitation Act, we can better serve students with disabilities in our high schools and community colleges. This will require reform by the states as well. Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities. And the result we will expect is simple: that every special-needs student be given a chance to learn the skills to work, and enjoy the freedom to live independently if that is their choice.

As families across America know, the care of special-needs children requires long-term planning, and especially financial planning. A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort.

Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements. They fear that Senator Obama's tax increase will have serious and harmful consequences—and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused.

Our opponent has an ideological commitment to higher taxes. And though he makes adjustments on his tax plan pronouncements seemingly by the day, his commitment to increase taxes remains the same. John McCain and I have just the opposite commitment. We intend to lower taxes, promote growth, and protect the earnings and savings of American families.

Not long ago, I spent some time at a place in Cleveland called the Michael T. George Center, a beautiful home for adults with Down Syndrome and other disabilities. I met Michael George, too, a boy of five with Down Syndrome. Michael is a healthy, sweet, joy-filled little man—and I saw in him all the things I wish for Trig in just a few years.

Michael's parents, Tony and Kris George, are advocates for children with special needs in their community. They are thinking far ahead, in their own boy's life and in the lives of others. They named the center after their son. It's a public-private partnership. This welcoming place—and so many others like it—shows the good heart of America. They are places of hope. They are the works of people who believe that every life matters, everyone has something to contribute, and every child should have things to look forward to, and achievements to point to with pride and joy. As many of you know better than I, it can be a hard path, and yet all the more joyful and productive when the barriers are overcome.

John McCain and I have a vision in which every child is loved and cherished, and that is the spirit I want to bring to Washington. To the families and caregivers of special-needs children all across this country, I do have a message: For years, you sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Thank you all, and God bless you."

Sarah Palin, the Governor of Alaska, is the Republican vice presidential nominee.

Finally Some Results

After six weeks of school David finally got a one-on-one that was supposed to begin on the first day of school. This time we have a male one-on-one and it will be interesting to see how things work out.

I met this week with a representative of the agency that is providing the service. I feel they are more prepared for this type of work than the last agency was. Much of the last agency's work was intense home therapy, which we were not in need of.

The new one-on-one began yesterday and David was testing all the limits so it was a little bit of a rough start. But, today was a very smooth day. I went in to school during the last class today in order to meet him. I wanted him to get his feet wet before asking if he had any questions.

I have now sent a letter to the school department that provides the funding for the one-on-one services to request that they award no new contracts to the old agency. Since the old agency hasn't been able to provide the services of existing contracts they don't need to pursue any new contracts.

A Tough Week

Late last week we found out that the one-on-one had not worked out and we began working on alternate plans. I was very upset with the agency that was contracted with Lynchburg City to provide services for David. They called on Friday and told us they had no idea who to get so we may need to look for another agency. Even though I feel this might be a good idea since overall they have not provided consistent service it does frustrate me about all the time I have dealt with them over the summer.

It is now a week later and after a lot of calls, e-mails and meetings it looks like a new one-on-one will begin on the 15th. Only this help comes too late since David received a three day suspension yesterday. Everyone agrees that David needs this support right now, but when the adults around him fail it is David that gets the short end of the stick.

The new one-on-one will be through another agency, which means hours upon hours of paperwork that I already completed with the old agency will need to be re-done. It also means many meetings to try to communicate what works and what doesn't work with David.

The old agency called today to see how it's going. Needless to say I wasn't interested in spending any time going over what's been going on since they just dumped him. I am planning to write to the board that funds this to let them know they need to dump the agency like they dumped us. If they can't provide service for a child they already have a contract with they do not need to be given any more contracts for new children.

Today has been very difficult since even though we know David needs a one-on-one we still hold him responsible for his behavior. So David is not allowed to play while he is suspended. We have him reading books and having to give us a synopsis of them. While Rich and I love to read, David has never enjoyed it. I am hoping that by reading The Adventures of Tom Sawyer he will begin to see how wonderful books are.

So this has not been a very pleasant week in our home as we deal with adults and a child that are not doing their jobs.

Best Laid Plans

First the good news
We had a meeting at the school yesterday afternoon in which we adjusted some of David's classes. He will go from special education social studies to advanced social studies. We did this with his science class last year and we were very pleased with the results. Most advanced classes have a high ratio of girls, which David loves. Whereas there is a higher ratio of boys in the special ed classes. David is still in advanced science and enjoyed the Skittles experiment he did with his lab partner yesterday. They then had to eat the evidence. He begins his advanced social studies class today.

We are very thankful for David's case manager at school. She is taking pro-active steps in managing his schedule and potential issues.

Now the bad news
When I returned home from the school meeting I got a message from the agency that provides David's one-on-one. You know, the one that is supposed to start with David today. They have not heard back from her since Tuesday. She was to bring in her paperwork and all the forms. She has not returned their phone calls and they can't get in touch with her. This is the second person they hired to work with David this summer who has done this. They have never worked with him and I have to wonder if his old one-on-one has been talking behind backs.

The agency has no one to work with David. So what to do? I am working with the school and we may go back to a day treatment counselor. We tried that last year at the beginning of the school year, but since they could only work with David for two classes this didn't work. David has grown up a lot and is behaving much better in school—in fact, the sub one-on-one that was with him yesterday didn't even have to go into two of the classes with him. I also feel that the teachers he has this year as a whole are much more equipped to deal with him.

This may actually be a blessing since we may be pulling supports out faster then we had planned. The question is if David is ready to have these supports removed.
This morning has been taken up with phone calls, e-mails and prayer for this situation.

Summer School Begins

Today was the first day of summer school. Due to David's issues, the school opted for a home bound teacher. This means she will come into our home for two hours a day for four weeks.

I am so thankful that the teacher God sent is a Christian. During the school year she is a special education middle school teacher in the next county.

Ms. Lydia is a lovely lady, who is deathly afraid of animals—yes even of Roger. So as of tomorrow "class" will be held in the kitchen. I chose not to have it set up there today since it still smelled of crab legs from yesterday's lunch. After explaining that David's issues were not academic but behaviorally based, she tailored her teaching to accommodate this.

She kept her teaching very easy to understand and after going over some math principles she quizzed him. Then he was able to quiz her on them. This made him learn in a more fun way, which he likes.

I just wish David had had a teacher like Ms. Lydia this past school year. David was not the only student in his class to fail. I was told that many of the students in his class did not pass. Since there were only seven students in the class I would say the teacher failed more then the students.

No Need to Attend

Last week I received another phone call informing me that due to the unstructured last week of school it might be best to keep David at home this week. This is not the first time I have received one of these calls, the first came at Thanksgiving break, followed by Christmas, Spring break and now end of school.

I really resent these calls. The law mandates the number of hours a child under the age of eighteen must be educated. Encouraging me to keep my son at home instead of at school goes against what is encouraged in other students. It was explained that because this last week of school would be more unstructured with movies and fun time it wasn't necessary for him to attend. We were also told to send a snack for a movie in first period if he did attend. What a wonderful way to begin the school day, hyped up on snacks.

I called the vice principal this morning and explained that the teachers are still being paid to educate the children and if the students need structure it is their job to maintain it. I also explained (again) that my job is to look long-term. When my son is employed and has a scheduled vacation in two weeks he will not be allowed to take off the weeks prior because it might be too hard to concentrate.

I was informed by the vice principal that David is going to proceed to the next grade. He has only failed one course and a student is only held back if two courses are failed. I asked what he needs to do in order to go into summer school to pass the math course that was failed. It will be interesting to see if we are told he does not have to attend, since he is in special education. Non-special education students must attend summer school, but I have been told that special ed students are not required to pass in order to graduate to the next grade.

Overall we have been very pleased with this school year, both with the school's willingness to work with us and with David's progress and growth. But, I feel if we had not been so willing to do our part as parents while explaining our reasons for decisions and expectations and followed up with the school on their part this year could have had very different results. David has had some great teachers, but also some that should not have been working with special education students. We have had many false starts with one-on-ones, but it looks like there will be a new one next school year.

IEP Changes

Today I attended another IEP (Individualized Education Plan). On the agenda was ESY (Extended School Year) for David. He has received this service for many years, but this year I was originally told that the school didn't provide it. After explaining my concerns and the fact that his school goals had not been met I was told he would be eligible. So this morning's meeting was to discuss if he would receive the socialization skills and behavioral reinforcement needed to bridge the gap over the summer. I came prepared with my file folder of referal copies and suspension notices over the last couple of months. I didn't need this because they had decided to make this accommodation. The service provided here would be considerably less then what was provided in the past, but it should help prepare him for the fall.

Construction Man David

The next issue was a referral that he received yesterday. In the past he would be suspended for 3 to 5 days, but this obviously has not worked. The suspensions have only resulted in more meetings and less learning. So the school has agreed that he is not to be suspended, but instead to be given after-school detention. How many days he must serve will be based on the behavior that resulted in the referral. If he serves ten days detention he will then have to attend Saturday School. One of the wonderful teachers he has is willing to spend three hours on Saturdays to make him work and learn. She, like we, believes it will only take two Saturdays for him to learn not to display these behaviors.

We then broached the subject of his grades. He is failing three classes, mostly due to the suspensions for his behavior. I was asked if I was still set on his failing and repeating seventh grade. I explained I would prefer that he pass to the eighth grade, but if he hasn't earned it by his grades he needs to repeat. I was told that they don't like to fail Special Education children. It would be different if I thought David wasn't smart enough to do the work, but David just doesn't want to do the work.

David and me having fun

I explained to the school that to me this is a life lesson issue. If we pass him without his having to try or do the work and gets the same reward (passing) as those who worked hard we are failing to teach him about life. As an adult he will need to go to work and then do the job assigned to him or he will not receive the same rewards as those who do. He will probably even get fired. I would much rather he learn this now and not when he is an adult and the lesson would be much more harsh. My concern is that we don't enable special education students to become reliant on the system to meet their needs for life because we have not prepared them.

This life training is needed for all children, not just special education students. Just like in learning to walk, they need baby steps. I can't send him to a job at twelve, but I can teach him that school is his job. If he fails to do his job he can't expect to get paid (graduated into the next grade).

A Written Record

Good news on ESY (extended school year) came with a phone call from the vice-principal. This is the same person who told me they didn't provide this type of service—just summer school for children who didn't meet their IEP goals. I explained that my son's IEP didn't have academic goals, all his goals are behavioral and social. I made a formal request in writing, so the subject couldn't be pushed under the rug until it was too late to accommodate my request. The school official called and said he is eligible (after checking with the head of Special Ed), but that they would schedule an IEP for April in order to see how he is doing on his goals. RED FLAG! I have a feeling this is going to mean I still have a little skirmish ahead. But I am preparing my ammo in the form of every call from the school, every detention and every suspension is being written down in a notebook. So when he behaves the week before the meeting and they state that he is "meeting his goals" I can fire back with all the calls I have received since my request. Just the sight of my notebook of what they have had to call me about should settle the issue. Yes, this is a lot of work and hopefully I won't need to use it, but it is comforting to know that I have documentation—just in case.

I have gotten services for my son that other special needs children have been denied. There are many reasons:

• I research. If I hadn't spent hours and hours on the internet and in seminars to find out what services my son is entitled to have he would not be receiving the services.
• I ask.If you don't ask it's likely you won't receive the services. If I feel there might be an issue or they are slow in meeting request I make my request in writing.
• I work hand in hand with the school. Only after I am convinced I can't get the services by working together then I will fight them for what is needed.
• I document. (I document, I document, I document) Did I mention I document? I have used my notes in order to go over heads and make a strong case. If I were to say "I think I requested this around January or February, but I can't remember to whom" this holds a lot less weight than "I spoke to Mrs X. on the phone on January 19th about requesting ESY, when we met on January 25th during our IEP, I handed Mrs. X a letter with my request."
• I request all reports that will be used in meetings to be sent to me prior to the meeting. I write this next to my signature allowing them to administer the test. I then verbally let them know I expect the reports prior to the meeting. I want the time to review the reports they will be using in the meeting so I can question areas they might skip over or so I can be prepared to question results.
• I stop meetings. If I feel the other members are wrong or if I don't understand some of their shortcut language I don't mind stopping the meeting to correct a point or to ask what they are talking about. This is how I got the OT (Occupational Therapist) to review her initial report of no need for services. I gave her copies of reports from Children's Hospital with an evaluation stating these sensory issues, then told her some of the issues we saw at home. When I stated these reasons in the meeting David's one-on-one said she had seen those issues in the classroom also. After talking to the OT specialist she admitted she had spent one class observing him and some of the issues she saw she put down as behavioral and not sensory (since she had been prepped by the school on his behavioral issues). David is now receiving accommodations for sensory issues. I do understand that she has a limited amount of time and many children to evaluate, but my job is to make sure my son is receiving the services he needs to be educated properly.

Update on IEP

I attended another IEP meeting this morning—only an hour, which is much better than the usual two- to three-hour meetings that are more common. David will be taken out of LD science and placed into an advanced science class. This will be a more hands on class, since he learns kinesthetically—this is wonderful news. The only reason he was in the Learning Disabled class was behavioral issues and not that the class size was smaller than the 32 students in regular science classes. The new class will have few students and more girls (which he already eats lunch with on Fridays.)

I also broached the subject of ESY (extended school year), which he has had for the last three years. I took my request in writing so that they knew this was an issue that I am serious about. This is not a typical summer school, but usually teamwork-related outdoor activities—because his IEP goals relate to behavior and social skills. They hemmed and hawed and are now going to take my request to the head of special education.

While I was at the school waiting in the office for the meeting to start, a grandmother came in complaining. She raises her grandson who was sent out of the classroom yesterday then received a suspension due to smart mouthing the teacher and fellow students. The woman was telling the teacher and secretary, in a raised voice, that it was illegal since he can't be punished for the same thing twice. She would really have a problem with me since I believe the student should then be made to work all day at home on the day of their suspension.

When the teacher tried to expain that the student had severe anger issues the grandmother responded with "well, don't we all?" I thought, "yes we do, but does that make it right?" When the teacher tried to direct her to the head of guidance and to introduce them, the woman said "I don't know him." The woman could not have been in the guidance director's office for more than a full minute when she stormed out.

Peter and Pam Wright
of Wrightslaw

This woman isn't helping her grandson in two ways is creating obstacles for him to overcome: by minimizing and excusing the behavior she is encouraging it but also she hasn't taken the time to learn education law and then spouts off about his rights. I have found that firmness and knowledge about the true rights are more effective. I even attended a full day seminar last fall with Wrightslaw, special education attorneys who empower parents to become advocates for their children.

Organizing for School Meetings

Having attended many school meetings, for my own son and also as moral support with other parents for their children, I have found that the way you present yourself can determine how seriously they will take you. Even before my son started school I learned that I needed to keep all his records handy. (One doctor's office misplaced my son's birth records even though I provided them copies three different times.)

Filing System: Before

I have used a rather large notebook and took the notebook to meetings and doctor's appointments. I have often been able to supply a report before the school official was able to locate it in David's records.

I have also demanded that they include reports from doctors and testing that they do not require. The additional testing we had done helped get him services that would not have been offered so readily otherwise. I attend the meetings as if I am paid to be there, dressed nicely for the meeting and coming ready with files, paper and pen. But, my folder has become increasingly full to overflowing.

So I headed to out to find a filing box big enough to leave room for growth, but small enough to carry comfortably. After looking at several stores I hit the jackpot at Target. My new box is pretty (and oh how I love pretty things). It has handles on the side for easy carrying and even came with pretty multi-colored folders inside. We saw no price on the box or any of the other boxes on the shelf. In fact the price was not even on the shelf. When we tried to check-out, the employees couldn't come up with the price either. So they offered the box to us at $5.99! I had seen the folders alone for this price, so I snapped it up quickly.

I have spent the last two weeks organizing this new system, including a spreadsheet with the dates and a description of each document. I have printed this spreadsheet to include in the front of my box for even quicker retrieval. In fact, I am now ready for my meeting today at the school. I feel my attitude about these meetings has benefited me, they tend to take me (and my son) more seriously, and this has allowed him to get better services more quickly.

Filing System: After

On the other hand, I have been with another parent who attends the meeting when it is convenient. She missed an IEP (Individualized Education Plan) because her husband had taken the day off, so they went to the gym and afterwards went out to lunch together.

She called me all in a panic saying they had held the meeting without her and she was not happy because they weren't going to provide the services the mother wanted. She wanted me to intervene and get the school to schedule another meeting. I had to explain that I would go with her to the school and talk to the guidance counselor to see if we could straighten out some of the issues.

As we began to talk, I found that this was not the first meeting she had missed. At this meeting she was dressed in sweats and her general appearance was haphazard. The teacher we spoke with stated that she continued to send home notes that were never responded to. I had to sit the mom down and explain that the school was perfectly within its rights and would not be scheduling another IEP and in the future she needed to take these meetings more seriously.

If her husband was home the day of the IEP that would have been perfect for both of them to be involved. The school and she needed to work together and not as an adversaries. The school was really meeting the students needs, but mom wanted more than the daughter needed. Needless to say that was the last that I heard from the mother. I had already suspected this since her attendance and input into our support group was very low. She never did attend another support group meeting and never responded to our repeated calls to her.

So I will head out this morning with my new pretty box and fight for the needs of my son.

A Trip To Holland

I am often asked to describe the experience of raising a child with a disablility—to try to help people who have not shared this unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say "Yes, that's where I suppose to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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As a parent of a special needs child this poem touches the very core of my soul. I have met some amazing people due to my trip to "Holland." People I would never have met if not due to my son's needs and I would not have changed my missed flight to Italy for anything.