Who's Thinking About Next School Year?

I am!! In browsing around, I found some excellent material online that I wish I had found much earlier! Such good info about IEP meetings, involving the student and self-advocacy. Wow! I will be asking my son this last set of questions, for sure.

What Exactly Does Self-Advocacy Mean?

It means taking the responsibility for communicating one’s needs and desires in a straightforward manner to others. It is a set of skills that includes:

§ Speaking up for yourself

§ Communicating your strengths, needs and wishes

§ Being able to listen to the opinions of others, even when their opinions differ from yours

§ Having a sense of self-respect

§ Taking responsibility for yourself

§ Knowing your rights

§ Knowing where to get help or who to go to with a question

One of the best places to start teaching your child about self-advocacy is in his or her Individualized Education Program (IEP) meetings. Including your son or daughter in the IEP meeting provides him or her with an opportunity to learn and practice important life skills. Some advantages your child may gain by being involved in the IEP process include:

§ Learning about the impact of his or her disability

§ Practicing goal setting

§ Building teamwork skills

§ Developing an ability to speak up for himself or herself

§ Participating in a process of resolving differences

§ Gaining an understanding of his or her strengths and needs

§ Learning how to ask for and accept help from others.

Even very young children can contribute to their IEP meetings. If you feel your child is too young to participate in the entire meeting, you may choose to include him or her just in the opening of the meeting. This helps your child to know the IEP team members better and to start to be more comfortable in a child to display at the meeting. You can also receive your child’s input before you attend the IEP meeting. Ask your child if there is anything he or she would like to share at the meeting or to have you share. It can also be very beneficial to ask each team member to state one positive trait or skill your child has as you begin the meeting. Be sure to include your child in this sharing of positives. After the IEP meeting, sit down with your child and explain the goals and services or answer any questions your child may have.

As your child becomes older, the ways in which he or she can participate in his or her IEP meetings greatly increases. It is important to discuss the meeting process with your child beforehand. Role-playing being in an IEP meeting with your child can be a great teaching tool and may help your child to feel less anxious about participating.

Some Questions You May Want to Discuss with Your Son or Daughter Prior to the IEP

Meeting Are:

What do you want to learn or work on this year?

What are your special concerns for the school year?

How do you learn the best?

What do you need to be successful?

What would make learning easier for you?

What do you wish your teacher and other school staff would understand about you?

Discuss with your child how to handle the situation if something negative or difficult to hear is said about him or her in the meeting. Determine at what point, if any, you would stop the meeting and have your child leave. If the meeting is likely to be too stressful or negative, have your child only attend part of it and determine the agenda ahead of time with the team. Be sure to include your child’s input on the agenda. If your child chooses not to attend a meeting, ask if he or she would be willing to share ideas or opinions in writing or on tape to provide to the team.

Get more of this good stuff here.

If You Could . . .

Is it possible that writing techniques taught to my son two years ago are positively affecting language and communication today? I have reason to believe so. I am going to attempt to recall several of the questions he has asked me recently that I believe are connected to his 7^th grade English class. His middle school years were complicated and are fraught with wishes for a do-over on my part, but it encourages me to see that something good yet remains from that class I pushed for him to be in!

Every single day there was a writing prompt on the board, and the students were required to answer it as fully as possible in a short amount of time. This was sometimes frustrating for N, due to his fine motor skills not allowing him to write as fast as others, not to mention his language delay. (We looked into a device –like a mini laptop—but it did not work out.) The questions usually started out, “If you could _________, what would you_________ and why?” He never turned these questions outward. Until recently. Now they are non-stop.

“If you could have any superpower, which one would it be and why?” (Hmmm, still thinking. . . .)

“If you could drive any car you wanted, what kind would it be and why?” (Mine is fine. If it stopped working, I would think about it then. I just don’t let myself go there if there isn’t a reason! But I said an old Camaro anyway.)

“If you could work at any restaurant at all, which one would it be and why?” (I said a bakery. I’ve always wanted to operate an industrial-sized mixer and use those huge ovens and pans. ??)

“If you could work at any store, which one would it be and why?” (I said “Glo”, this cute little makeup store. I have a thing for tons of colors-- I only need to look.)

“If you worked at Sonic and it was your lunch break, what would you fix and why?” (I said tater tots that are fried twice as long to get them really crispy.)

What I recently learned about him is that he would work at Bed, Bath and Beyond if he could work at any store, and that if he worked at Sonic, he would make himself a triple burger with fries and a Coke.

I read just recently that adults and children with Down syndrome typically ask much fewer questions than others. This inhibits conversation greatly if you do not ask questions. What cracks me up is that he never forgets the “why”, leftover from the class! I would love to know why two years later this is re-surfacing and what jogged his memory.

Now I ask you. Do you have a definite opinion on any of these questions? Please tell. And why.

Monday, Monday

Sometimes Mondays are hard. Sometimes Tuesdays are hard. My boy does not like to let the weekend go. When he was having a terrible time at school (two schools ago), he had such troublesome stomach pain in the mornings. This carried on until we finally got his school switched. (That was like going to court and will be for another post!) But even though we have had his stomach completely checked out, that morning trouble still reappears, but in a much milder form. Usually on Monday mornings.

I have good reason to believe that his current school is not stressful. I believe that he has some general dread that comes with Monday, just like it does for a lot of people. The weekend is just too much fun and school is . . . not. It’s school. When he has these episodes and goes on with his day, he later reports being fine. Once, though, we attached his staying home to a test day! Sometimes he is able to be persuaded that Monday is not half bad. Monday is a great day to buy lunch at school, as opposed to making his own. What is served? A huge slab of chicken fried steak and two big scoops of mashed potatoes topped with gravy. Sounds like a good Monday to me.

I adopted a comedy routine for the drive to school on Mondays and some Tuesdays. It is me pretending to be Super Nanny to him. It usually sends him into fits of laughter because I fixate on his grooming, throwing in lots of references to the objects in his nose and the whiskers on his chin. My pitiful British accent makes him snort and gasp for breath, while begging me to stop as we slide into the drop-off line at school. I congratulate myself on his happy glance back at me as he shuts the door. I thought I was going to have to pull out the routine this morning, but he stopped me, saying, “No, Mom, really . . . ,“ and he changed the subject. I guess he knows what I am up to and if he needs it. Or maybe my routine is that bad!

An Outstanding Advocate

A few months ago, I had the opportunity to hear a dynamic speaker at a conference. He had more energy than anyone I had seen in a long time. Just watching his animated presentation was highly entertaining, and then he mentioned his ADD in passing, which I figured was part of his package! His positive approach in advocating for all people with disabilities (or "possibilities", as he likes to say) to be employed was contagious. His premise is that there is no one who can't be employed, and he illustrated with an unbelievable story.

As a former special ed teacher, he was accustomed to looking for each student's strengths. He needed to find a job for a nonambulatory, nonverbal guy. His strength or ability? Blinking. That is literally all he could do. He studied this guy's likes and dislikes, and found that he loved loud, noisy places. Patrick, the speaker, found him a job in a busy copying center, where with a switch, powered by a blink, he could run copiers and collate! Imagine that. This man actually had to lie on the floor because of his disabilities, but he thoroughly enjoyed running his copier with his switch. Amazing.

Patrick Schwarz, the speaker, has books to his credit and has very unique ideas for the inclusive classroom. He also described several brilliant ways of helping kids transition to the next school. (That was my favorite part, since he took a kid who hated change to his new high school several times. He played basketball there with him with no one around, made sure he bought him a drink from the machine, and slowly introduced him to staff and classrooms. Voila! It was a beautifully smooth transition.)

One controversial idea he had was to always reward with the student's (or person's) passion. He was so emphatic on this topic. He told all about a noncompliant student who loved whales. They could get him to do nothing until Patrick discovered this love. Every positive behavior was then rewarded with a whale stamp or a chance to work the whale puzzle, and he blossomed into a very cooperative, hard working student. People I talked to wondered, though, if that would just further an obsession that might need to be extinguished or was inappropriate. I say if the behavior is undesirable enough, bring on the reward. What do you say?

You can check out Patrick Schwarz's website here.

Special Exposure Wednesday -- Day 6

Polo shirts and khaki shorts were fine while it was so hot, but now N is required to wear a tie every day to school. Yes, a tie! Every day. He likes it and makes his momma ga-ga over him each morning.

For more great photos, go here.

What's a Swamp Mother to Do?

I hardly know what to say about N’s school so far. I haven’t written much about it, except that we did not send him back to our regular school district this year, and that my coping with his entrance into high school has sent me in search of chocolate and purses. This education thing is hard. And the cumulative effect of all the years of being on guard and in defense posture may have made me a little wacky . . . and very wary. (You may think I meant “weary”. That, too.)

Seeing as our district made it somewhat clear back in the spring that they were going to assign him to a certain high school, I began to search out other options. I only did that after I spent several days at this school trying to figure out how it could possibly work for N. To say that the facility is woefully inadequate would be putting it mildly. The basement is mostly reserved for the students with special needs, and it is routinely called “The Swamp”. I spent time in the swamp, I sent N to “shadow” in the swamp, and I interviewed others who had swamp experience. I even have depressing quotes from a former swamp teacher who asked me not to repeat them. What is a “would be” swamp mother to do, except go rogue?

We left the district. Where we are now provides no special services. But they are more than kind and are accommodating in every way. The whole thing was the idea of my Neighbor Friend. (She is her own form of a super hero . . .) And she approached this very unusual school with the idea. And they said yes! Actually, not only yes, but, How can we help make this work and work well? Wow! We can scarcely believe it. The swamp mother thinks she likes life outside the swamp.

Better, Not Bitter

As I re-read my last post, I thought, “Hmm, I sound sorta bitter about my dealings with the ol’ school district and their people.” To tell the truth, I think that often I am. Really, things could be so much better, but it doesn’t seem that there are many administrators who really get it. We have had some phenomenal teachers who have been open-minded, kind, and very creative with regard to inclusion, and my son has had some good years, despite the Special Ed Administration. Maybe these people are overworked and are burned out on meetings and lack of funding.

I have heard it said, “Let tough circumstances make you better, not bitter.” So I have to ask, How am I better because of my dealings with our school district administrators? Here are several ways. I have learned to be prepared. As in, be prepared for anything crazy that these people might suggest. I have had it suggested to me that my son be dropped off at a different point at the school so that he might think he was being taken to a different school. (Yes, they really did say that.) They have turned me into the master of asking, “What? Are you serious?”. Being prepared with that question has helped me in all matter of circumstance.

I have also learned to be persistent. This is another trait that can have lots of value in other situations. The old “squeaky wheel gets the grease” and “If at first you don’t succeed, try, try again” have been put to the test and rewarded more times than I can count in my school meeting dealings. Life demands persistence, and I am grateful to have developed a tendency toward it.

Another way I have become better is through learning to become creative. If something I requested for my son got vetoed, I learned to swap it for something else just as good, but couched in different terms. This is an art I still need to develop, for it often requires quick thinking and good negotiating skills.

I have also become more aware of humor in situations. The neighbor friend that I have referenced has referred to some school meeting situations as, “Straight out of a Saturday Night Live skit”, which has been so true!

So, all of that was not for nothing, and it has made me wiser and more bold for the sake of my son. But there is more I want from the experience. I desperately want my experience to count for something for other people. I don’t want the battles fought to be for nothing, so that the “powers that be” can go about doing the same thing they did before us, keeping status quo. I want it to count as forward progress for students with special needs in the public school system. What can I do to make lasting change and promote willingness to try new things for the cause of inclusion? At times, it burns in me to make more things better than just me.

We'll Pass, Thanks

Have you ever felt like someone was avoiding you or did not want to talk to you? Have you ever felt like that someone was your school district, mainly the ones who are supposed to provide special services to your child? We have a long and varied, love/hate relationship (ok, you can leave out the love part), mostly with me leaving voicemail messages about my child’s needs and what they (Special Ed Administration) need to do to meet them. And mostly with them not responding or bothering to even call back. It would also appear that they try to get by with the least amount of effort on their part as possible. But we certainly hope this is not the case.

I suppose they started disliking me the first week we were a part of the district, when N came to first grade class. We had already had our IEP meeting and, upon their determination that he was not a flight risk, they made some sort of invisible note that he should not receive an aide for support, even though they determined out loud that that would be best.

After speaking with his frustrated teacher on the first day of school, I knew that their plan to not spend any extra money on my child would not survive. Their failure to provide an aide could, perhaps, be an effort to get him shifted to the self contained classroom or to make the teacher resentful and me give up. Me give up? No way. The first four weeks of school went like this: I went to the school from about 9:30 to 1:30, acted as my child’s aide, went home and called the district, Special Programs, specifically.

Usually into the voicemail recording (and into my log book), I would say each and every day, “Yes, this is Johnna, N’s mother, and I have been at the school today for about 4 hours acting as his aide. You see, he needs one quite desperately, and I am not an employee of the district. Please send someone tomorrow, as his teacher is very ready for her arrival. Thank you. Thank you so much.” I repeated this every day for 4 weeks. Finally, they sent someone. Yes, I was glad. This was only the beginning.

But today, 8 years after I first endeared myself to them, was the ending. The bus with our school district’s name on it pulled up in front of our house, someone hopped out and put a notice in our mail slot and rang the bell. The bus was driving off as I answered the door. Oh, so this is how I find out the high school he is assigned to? Why had no one bothered to tell us before the day school started? I have no idea what sort of plan they expect him to be met with tomorrow. And, I do not plan to find out. Good thing I had something else in place and he has already started at a school outside this district.

Yes, I have always felt that “someone” was avoiding me—the “someones” who are supposed to be providing a “free and appropriate education” for my child. What we got was not free; it cost me a lot. And appropriate? Maybe I’ll save that for another post!