In Part 1 (1981) Aaron was 6 years old and we outlined a vision of what a happy, successful quality of life would look like for Aaron as an adult. (click here).
In Part 2, Aaron was 14 years old and we were moving forward with the plan(click here)
In Part 3, Aaron is now 23 years old and is moving out of his parent’s house and into his own place with a roommate and 24 hour assistance from caregivers. For a peek into his home setting here is an earlier post. (Click here)
Transition for Aaron and Mom
When Aaron was getting ready to move out, I wanted to write down some general ideas for the new caregivers. I knew there would be several of them and I wanted to have something in writing that would be in Aaron’s file. I’d read other parents talk about how staff people did not listen to parents. There were also so many details to remember, I knew it would be hard for anyone to remember everything I wanted to say.
Also, Tom and I were meeting with an attorney to try and set up a will and trust. We needed a statement of what we were hoping Aaron’s life would look like should we die.
Here is the report–or list–or letter that passes on some of the information I knew about Aaron.
In some ways this was part of my transition as well as Aaron’s–Part of my ability to let go of giving Aaron care 100% of the time and hoping he would be happy and safe.
We planned on taking Aaron home every weekend, and we planned on having the staff become part of our extended family and Circle of Friends.
We knew Aaron and the staff would work out their own ways of doing things, but it just seemed to make sense, that when Aaron couldn’t talk for himself, there would be some written communications about his likes and dislikes.
Because Aaron doesn’t talk with words this is my way of giving him a voice.
Aaron Ulrich (12-18-74)
November 25, 1998
Aaron’s Likes and Dislikes:
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Aaron is a very friendly person who likes to be around other people.
He sometimes will watch you from a side-way position instead of looking at you straight-on (He doesn’t like to watch much television, but will watch TV most comfortably from a side position also).
Aaron is also very intelligent. He will understand everything you say. Though, like most of us, he has selective listening when he doesn’t want to hear what you are saying. i.e. “Aaron it’s time for bed.” You want to talk to Aaron in a normal voice. He doesn’t like it when people try to talk to him like he was a baby. He doesn’t like high-pitched or very loud voices.
Movement Disorder/Autism
Aaron sometimes likes to be by himself, and will sometimes try to avoid being touched. At these times, I allow him to get his radio or a magazine or look out the window in his room (open the blinds). If he wants private time in his bedroom to lay on the floor and masturbate I will shut his door.
Some people will tell you people with autism don’t like to be touched or be with other people. That is not true with Aaron. Sometimes he likes to be by himself, but most times he likes being with other people. He is very sociable and friendly.
Aaron likes hugs and “Hi 5’s” and will shake hands. He will sometimes come and sit by you on the couch and very much want to be a part of things. Sometimes he will initiate these, but many times because of his movement disorder, he may have to be touched (either on the shoulder, or actually turned on the floor into a position where he can get to his knees) and formally invited to join in.
One way of getting him to join the group is to offer him a transition object. i.e. “Aaron, here are some cards, or a book to take to the living room.” “Give this to James” (his roommate.)
If you are interested, I have a book with more information on movement disorders written by Anne Donnellan.
Aaron uses facilitated communication to type messages. His typewriter is in a gray bag in his closet. His computer is in the room downstairs, it needs to have the initial program reinstalled at Microcenter. Tina Veale is his best facilitator, and she begins speech therapy again on Dec. 4th. If you are interested, I will provide the book Aaron wrote and a video about Facilitated Communication.
Books
Aaron is particularly interested in Science and People. I try to find books, textbooks and/or encyclopedias with lots of pictures on these topics. I try to find age-appropriate books that would be used by other people his own age (not picture books young children would use. We are always looking for more books, because they tend to not last long. Aaron will lick the pages of the books, when they get beat up or torn throw them out and let me know so we can get more books.
Cards to Flip and Sort
He also likes cards any topic: playing cards, picture cards, sports cards. These seem to calm him and are good for “waiting” times i.e.. in the car, lines in grocery stores…” He will pass the cards back and forth with you.
Aaron has Balance issues.
He will bite his hand or grab the closest object (which could be your arm or hair) if he is in a situation where he is off balance.
I try to place his hand on banisters or on escalator handrails wherever possible. He loves elevators, but again, I place his hand on a wall or handrail in the elevator. I grab his hair back and he will release your hair. This is almost an automatic response and usually it only takes touching his head for him to release.
We have found that placing a doormat at the place where he is to step seems to help him focus and position his step. This includes a bathmat in the bathroom and doormats by the front door and the bottom of steps (including the basement).
Another good idea is to take cards, etc. away from him as he goes down the stairs so he can use both hands for balance. If he gets in a position where he cannot move or is moving very slowly, place a hand on his shoulder; or have a person in front of him i.e. he will go up and down the steps on the bus faster if another person is in front of him, it is better for him to be in the middle of the line than first in line. Another trick for getting him to climb up or down stairs is to count them out loud (one, two …).
Bathing and Grooming
Aaron does not wipe himself so he will need help after he has a BM’s. His underwear needs to be monitored for discharge. Aaron will initiate going to the bathroom by himself, but he should be reminded to go whenever you are getting ready to leave the house. If you are in the community insist on him going every 1 1/2 to 2 hours more if he is drinking lots of liquids or has just finished swimming. Sometime Aaron will say, “Bathroom” or give the sign for “Toilet”.
Aaron likes leisurely baths. We think this might be because he can sit down and control his balance. Liquid soap with aloe (for his sensitive skin) is to be put on the sponge. The sponge stimulates his skin and helps in relaxation. This is a technique that is called “rubbing” in physical therapy. Usually I will give Aaron the sponge and encourage him to wash his private parts which he can do with some success. Then I will reapply the soap and scrub his underarms and privates again–particularly the right side of his upper groin area. (This is an area that will often get a rash.) Aaron does not wipe himself after using the bathroom so his bottom needs to be washed well. Aaron gets his hair washed with a mild shampoo every day. I usually use Ivory – full body or one of the others with no conditioners. Usually it has worked best to use a pitcher to rinse. Aaron likes his eyes wiped immediately after with a towel or wash cloth. Lastly, I wash Aaron’s face with a wash cloth. Watch for a big smile as you wash his forehead and cheeks:) . Aaron does pretty well in getting out of the tub. He has learned to brace his feet on the opposite side of the tub. If he leans forward he is usually able to swing his feet around so he can support himself in rising. When getting out of the tub, place his hand on the wall or on a rail for support. He likes a good rubbing with the towel, particularly on his back (Almost like a massage). Aaron will take a shower, which work well when you are in a hurry, but he loves baths.
Because Aaron will sometimes pinch, it is a good idea to make sure his fingernails are very short. His clippers for fingers and toes are in his top drawer.I try to use the clippers after his bath when his nails are soft. Sometimes you can only do one or two nails at a sitting, then you must wait until he is calm and try again. I try and cut his fingernail and toenails after his bath when they are soft.
Eating/Drinking
Aaron sweats a lot, so he needs lots of liquids. One soda pop per day is best. He usually chooses Diet Pepsi. If he drinks more than one pop, Aaron gets hyperactive and will sweat. He drinks a pop at the police station each morning on his job (ask the job coach if he is still doing this.) so alternative drinks are ice water, weak ice tea (so not to stain his teeth), and fruit drinks. I try to stay away from the red dye colored products. Aaron likes to drink his milk with ice in it. He also likes to chew on the ice. I try to get 1%, (the fat free seems to spoil so fast). Aaron can pour his own drinks from the fridge, though he will need to be monitored. He can put his cup in the sink when he is finished.
In order for Aaron to be able to go for Horseback Riding in the Spring, he cannot weigh more than 175 pounds. Dr. Freeman has written a prescription for a dietitian which was
given to Gloria after our Doctor’s visit last week.
Aaron’s diet is very important because only through monitoring his diet and vigorous exercise will we be able to keep Aaron off medication.
Morning Routine
In the morning Aaron has a very acid queasy stomach. If he drinks milk or orange juice without food, he will vomit (reminding me of a pregnant woman). We have found that if we give him a soda cracker or a couple oyster crackers immediately upon waking up, then he is fine and can eat breakfast. I usually force him to eat the cracker (put the oyster cracker in his mouth almost like a medication) but I do not force him to eat breakfast. He used to like to eat 1/2 a peanut butter and jelly sandwich before he caught the bus, and take 1/2 the sandwich with him. His snack at the police station is essentially his breakfast (ask the job coach about this).
Snack
Because Aaron has a one on one job coach at the police station, a fruit cup (low calorie) with a plastic spoon and a peanut butter and jelly sandwich (could be the one he didn’t finish at breakfast) and a napkin. The job coach should be consulted about how this is working. Often the policemen give Aaron treats.
Lunch
Aaron is not big on Ham, but will eat most anything else. Because there is noone to supervise at the workshop I usually used plastic sandwich bags that folded over, not zip lock. Aaron can open a bag of pretzels if he really wants them.
I can hardly think of his lunchtime at the workshop without an anxiety attack, again check with Vicky to see how this is working.
I try to fit both his snack and lunch in his backpack so he doesn’t lose them in transit.
Dinner
Aaron can help set the table with a placemat and after they are washed, he can sort the silverware into the drawer. He can clear dishes though you have to make sure he doesn’t just throw them into the sink (they break).
Aaron will need to be reminded to eat slowly. He alternates left and right hands, his food will need to be cut up. If he is eating too fast, the system from home and school was to put the sandwich or fork down between bites. It is unacceptable for him to grab food from anyone else’s plate. He will use a napkin if reminded. He is to keep his food on his placemat (that is his space).
Aaron likes most all foods. Favorites: sharp cheddar cheese, popcorn, pretzels (nonfat) drinks, drinks, drinks, not big on candy and for some reason has decided he doesn’t like ham. Everything else look out! I’m trying to get him to cut back on french fries and choose something else.
Future Goals
Aaron really likes a schedule and some structure. A schedule book and a set routine like swimming and gym on Monday and Wed., grocery on Tues….. Aaron used an order book at restaurants when he was in school, he also participated in grocery shopping. I have some information on this if you wish.
There are two cookbooks with pictures (from his friend Julie) which have simpler recipes near the counter. I would like these to become some of Aaron’s ISP goals when things get settled.
Aaron says “hamburger” and “popcorn” for most everything. They usually mean he is requesting food. Though they might be his way of engaging you in conversation and have nothing to do with food.
Aaron has two exercise bikes downstairs. He will ride them if someone else rides the other. He will also play some notes on the organ if you sit close to him on the bench or a close chair. I usually try to touch him- my leg to his leg. Again this is another form of the movement disorder and using facilitated communication. If he is sitting at the table, he will be more calm if someone else is also sitting at the table, he will eat if someone is also at the table eating….
Aaron also likes to look at pictures, so we will be giving him a camera to take some pictures for scrapbooks for Christmas.
I hope this gives the basics, Aaron is just a great loving person. I hope you can love him as much as we do.
Additional Thoughts after Aaron actually moved in.
November 29, 1998
Clothing
Because Aaron is always hot, I try to put him in layers of clothing with a t-shirt underneath that could be his shirt if he needs to get cooler or if he spills anything on his shirt. Aaron has started to be bothered by his neckline, so recently I have been getting him V neck t-shirts and/or golf type shirts with buttons. This seems to reduce his discomfort and saves the shirts from figorous pulling at the collar. For sweat shirts I get him X-Large so he can take off the shirt himself when he is sweating.
Toileting
Aaron is to always sit down when he goes to the toilet. Because of his movement disorder, this helps his balance. Plus, his aim is terrible and this saves the walls, but sitting down is the only way I have figured out for a much more serious problem. In public restrooms, Aaron cannot use a zipper like most men, which then means he has to pull down his elastic waist pants exposing much more than the typical person. This not only makes him more vunerable to abuse, but it has caused some smaller children to become afraid (one parent told me he had exposed himself to her son). In order to be consistent across environments and avoid unnecessary safety risks, it has been our policy at school and home to just have Aaron go into a stall and sit down.
Aaron will need to be reminded to flush. This has been a major goal for a long time. Usually a gestural point to the toilet is enough. A verbal prompt “Flush the toilet” is plan B. I usually body block him so he cannot leave the bathroom until this is done.
Teeth
Aaron needs to have his teeth brushed 2 times daily. After his cracker in the morning and at night. Aaron will often gag. I let him try to brush and usually I sing three times: “This is the way we brush our teeth, early in the morning (before we go to bed). After he pushes the brush around in his mouth, I take the toothbrush and scrub more completely. Aaron has to go to the hospital and be put under for cavities and intense cleanings so thorough cleaning is important. The dentist said we need to be extra concerned about his front bottom teeth, front and back.
If Aaron has milk or pop before he goes to bed, I try to give him a little water to rinse off his teeth. Aaron has been able to go through the motions of gargling water at times, he is good at spitting.
Illness
Aaron is very seldom sick, but because he can’t tell you verbally there are signs to look for: He will get feverish and be laying around more than usual; He will be pulling on his ears or will seem to want his radio very loud (usually means ears are plugged with wax); For these two conditions I usually have Aaron go to the Doctor.
Sometimes Aaron will be congested. Aaron does not blow his nose, so he has no way to get out the phlem. When he seems to be getting a cold, I will give him Benedryl to dry him out (in top drawer). Sometimes I will use a vaporizer over night, which seems to help a lot. If his nose gets crusty, put a little vasoline under his nose.
Sometimes he will throw up. Aaron will not make it to the toilet so either a bowl or a towel are put up to his mouth. Aaron usually throws up in twos, so after the first burst, wait a moment and then a second round will begin. Then usually I wash his face with a warm wash cloth, and let him soak in a medium warm bath (not hot) and give him an ounce of pop when he wants it. I only let him have one ounce at a time. He will keep saying “drink” but he gulps it and then throws it up again.
Aaron sometimes get a rash on his groin area. This area needs to be washed and dried after each bath. Prescription cream is in his top drawer if rash develops. First apply the Lamisol, then the Hydrocortizone cream.
Aaron can take small pills but has trouble with larger pills. If medication can be given in liquid form or small pills he does fine. For pills, place one pill in his right hand and have a glass of water ready in his left hand.
Note: Aaron is extreemly sensitive to the sun. He can sunburn in Summer and in Winter and should wear sunscreen whenever in sun for over 15 minutes (in top drawer or in backpack).
If you have any other questions, I’m just a phone call away.
Thanks for working with Aaron. I know you will soon learn all the little things that make him such a loving person.
What do you think?
Would all this detailed information be helpful? Do you want to take bets on whether the caregivers and staff even looked at this?????? What would you do?
We’re moved to be closer to our kids and deal with health issues I talked about in the post “…the yet-to-be-disabled”(click here).
Tom\’s Garden with memory rocks
For the last 10 years, we’ve loved everything about our condo: our neighbors, the location, the resort setting, watching the morning mist on the golf course, and the fact Tom no longer had to rake leaves, cut grass or shovel snow. Tom did choose to nurture his gardens. Pictured is the smaller garden in the front of our condo, there is a much larger one with tomatoes (with old golf clubs as stakes) in the back yard.
In many ways, Realtors are like the professionals in “special needs” and “Disability World.” (click here) Like most professionals, it is all about “being objective,” utilizing “best practice” and “scientific research.”
They would look at this garden for its curb appeal. Since I will NEVER be objective, I want to give you an unscientific tour of Tom’s garden.
Over the past ten years, he has fertilized, tilled, and built up the soil until it is now rich and hearty. In Ohio, it’s been a dust bowl kind of summer, but Tom’s kept the flowers alive with his devotion and a lot of watering. He grew most of the marigolds and petunias from seed. He’s brought the impatiens back from death several times. He agonized over whether the white flowers would be better positioned between the pink and purple, or the red and pink. The golf flag was a Christmas present from Aaron. We bought the log on a Sunday drive in the country. The rocks are special: each camping trip Tommy and Aaron got to pick a rock to bring back for the garden. There is one from Chief Crazy Horse’s Monument (we bought it-don’t worry). There is one from outside Yellowstone National Park that has the yellow flecks in it. There is one from my sister’s yard in Colorado that caused the bomb squad to detain our luggage. Our neighbor even brought us two rocks from the coast of Maine on his last trip. You get the idea.
This might be “just some flowers” to an objective professional, but every flower, every rock is special. No one will even know a maple tree used to be out front, or we had to advocate with the home owner’s association to place the street light on the street (duh) instead of in the middle of the garden. Who would know a lawnmower propelled one of the rocks through a neighbor’s window? Rather than lose the view of the garden, she chose to redesign her window. Who would ever think the garden has a history and touched so many lives?
Though we can take the rocks and some planters with us, this little garden carries 10 years of memories. Like everything else in our move, it’s never objective–it’s very much personal.
Tomorrow I’ll be blogging about, “Turning it over to the professionals” a phrase which turns the blood of parents of kids with disabilities to ice.
Your Turn
What are your experiences? We are all on this life journey together. There are some adventures that just make us human. Share?
Keep Climbing: Onward and Upward.
All the best,
Mary
Alison and I are starting a Twitter hashtag #CB/BC Join us.
Aaron, Tom and I made our get-away-from-moving trip was to Clifty Falls State Park in Indiana. The weather was perfect, the ride up the Ohio was perfect, Aaron was perfect. Whew!
When your child has a severe disability and doesn’t talk with words, you look for ways to measure his happiness and enjoyment by other non-verbal signs.
Over the years, Tom and I have decided it is by the number of times Aaron crosses his leg.
I caught two on film (do they still call digital, film?)
Check it out:
Aaron\’s reading and watching Bengal game in community room
NOTE: I’m congratulating myself for figuring out how to download, edit and post my pics in under two hours. I’m a slow learner, but I’m learning. Now, with another hour or so, I might be able to figure out how to put the pictures side-by-side. Or not?
More about the trip tomorrow in Smokey the Bear and Aaron.
Keep Climbing: Onward and Upward.
All the Best,
Mary
Check out my challenge partner Alison Golden of The Secret Life of a Warrior Woman: (click here)
Comments:
Where do you like to go to get away?
How do your children communicate without words?
The Inclusive Class Podcast presented a panel with Tom Mihail, Paula Kluth, Torrie Dunlap, Lisa Jo Rudy, Frances Stetson, Kathleen McClaskey and myself.
The Title was: “When Schools say ‘NO’ to Inclusion”
Topics include Universal Design, Technology, Differentiation, Inclusive after-school and community recreation, and in the last few minutes I talked about Inclusion as a Civil Right and strategies for getting inclusion with your IEP.
Below is the supplemental material for my topic. If you have any questions please contact me.
So, you are sold, you have heard all the information about inclusion, you know in your soul this is what would be great for your child. You talk to the teacher, the principal, anyone who will listen and they tell you it won’t work for your child, it’s a passing fad, it is too expensive, it will hurt the other kids in the school…blagh, blagh, blagh.
What do you do?
Here are the 5 Points I outlined in my part of the panel:
1. Learn the History of People with Disabilities.
Legal Segregation
Society and Schools have been saying “No” to Inclusion for hundreds of years for many people, not just for people with disabilities.
1800-1900s. Institutions and Forced Segregation were common for those with the labels of mentally defective, feeble-minded, idiots, uneducable and untrainable. Individuals and Parents had no say. People who were different were removed for the health and safety of the community.
Today we still have prejudice against minorities, young women who are unmarried and pregnant, gang members, young people who are gay or lesbian, immigrants, poor, people who don’t speak English, Native Americans, homeless, children of migrant workers…
Our society is more diverse every day, we need inclusion for everyone.
Parallels in Time: A history of people with disabilities
“The 14th Amendment to the Constitution was ratified on July 9, 1868, and granted citizenship to “all persons born or naturalized in the United States,” which included former slaves recently freed. In addition, it forbids states from denying any person “life, liberty or property, without due process of law” or to “deny to any person within its jurisdiction the equal protection of the laws.” By directly mentioning the role of the states, the 14th Amendment greatly expanded the protection of civil rights to all Americans and is cited in more litigation than any other amendment.”
Citizenship: Is someone who has an intellectual or other disability, a person? (consider the slaves, Native Americans, women, immigrants, prisoners…)
Due Process: If you have a disability, do you have the right to due process? (consider people with physical, intellectual disabilities, people who are deaf, blind… can’t read/write/talk, people who can’t pass IQ tests…)
Equal Protection: If you have a disability, are you entitled to the same rights and benefits other people have? (go to school, live in community, get jobs…)
Consider the implications:
Plessy v. Ferguson (1896) Separate is equal. 50 years of Jim Crow Laws.
Brown v. Board of Education (1954) “Separate is inherently unequal.”
Testimony of Tom Gilhool before the Joint Subcommittee Hearings on “the Events, Forces and Issues that Triggered Enactment of the Education of All Handicapped Children Act (EHA) of 1975” in TASH newsletter, 1996 p. 11-15.
Excerpt about PARC decree and 94-142: Teacher Training and Best Practice
The Requirement that Schools Know and “Adopt” “Effective” “Promising” Practices. Requires the delivery of an “effective” education. One, the Act (EHA) requires states and districts to see to it that all teachers, both “regular” and “special” are fully informed of and continuously trained in “promising practices” in the education of children. “Second, the Act requires every district as well as the states to “adopt promising practices’ Third, the Act’s requirement of “a free appropriate public education has been help by the Unites States Supreme Court to mean an education “reasonably calculated to enable the child to achieve education benefits”
Hudson v. Rowley, 458 U.S. 178, 203-04V (1982).
NOTE: Remember to NOT just look at the current regulations, go back into the Congressional Hearings before each law was enacted, the legislative history, court cases…
Other Court Cases:
“Inclusion is a right, not a special privilege for a select few” (Federal Court, Oberti v Board of Education).
You will want to quote the most relevent and recent cases.
Focusing on the dignity and goodwill of the people you’re working with. Build trust. Create a common vision.
Partners in Policymaking has programs in almost every state. The courses are designed for parents of young children and self-advocates. New groups start every year and are usually funded by your state DD Council. On the Partners website, find your state liaison.
NICHCY has a list of organizations and Parent Training Centers in each state. Find people both on the National, State and Local level who think like you do and can help.
National Organizations for Professionals often help parents and teachers. TASH helped me. I know the ARC, United Cerebral Palsy and National Down Syndrome Association have done advocacy work. I’m sure there are others.
Check out your local university. Sometimes you can find a professor or student who can help.
In our particular situation, because no group existed-we started a parent group in our local school district.
Set group goals: start an extended school program in the summer; make the buildings more accessible with universal design; start an after school Job Club and Key Club at the high school. By focusing on specific goals we were able to get local grants, publicity and see tangible results for our children.
NOTE: In hindsight, I would have made this an ad hoc committee of the School PTO or General Education Parent Organization. I would ask parents and teachers of general education students to be on this committe so it is inclusive. 20 years later, duh, it is so obvious.
The first part of the IEP process is getting evaluations of current level of functioning and setting specific individual goals.
Be creative. Don’t let the school psychologist run the show.
Have your IEP team decide what kind of evaluations they need in order to have your child make educational progress in all the school environments.
There are the formal evaluations that are the traditional testing tools of the experts. And, there are the individual informal tools also designed by experts, but cannot be standardized and put into multiple choice answers.
Informal Evaluations
1. Person Centered Planning, Circle of Friends can supplement the formal evaluations and look at social relationships, before-during-after school-weekend-summer activities, this can also be used for team building, communication, transition and long term planning.
http://inclusion.com/ Where inclusion began, great tools.
2. Educational Evaluations
Educational Evaluations are usually conducted by a teacher or other educator with the appropriate teaching license.
Educational Evaluations look at an individual person in their life spaces. Aaron’s evaluation started in his home, followed him on the school bus, in the classroom, in the lunch room, bathrooms, gym, after school activity and back home. The evaluation compared Aaron’s current level of functioning in each environment and then made suggestions for IEP goals.
For instance, the educational evaluation shows the “individual benefit” for Aaron. Not the whole class or school, just Aaron.
The Educational Evaluation determined Aaron, with accommodations and related services, could be in an inclusive class. What supports would he need? What supports would the teacher need? How would the curriculum be differentiated? What technology? Universal design strategies could be used?
See the difference between this sort of evaluation and a traditional IQ or standardized test?
Who Pays?
The tricky part is that if the parent pays for the evaluation, and chooses their own “expert,” then the school district only has to “consider” the recommendations.
If however, (at least this is how it used to be), if the parents or teacher ask for an evaluation, and the school district agrees to pay for the evaluation, then they have to use that evaluation to develop the IEP, or if they disagree, they have to get another evaluation saying the first evaluation was not appropriate, and why.
If you go to court, the educational evaluation can make all the difference. If you are writing IEP goals, the educational evaluation gives you a practical starting point for goals and objectives. (The conversation is NOT about “Should we do this?” but rather, “How do we do this?”)
And, if the parent does pay for the evaluation and “prevails” in a due process hearing then the school district has to pay. Of course, it goes both ways and is risky because if the parent loses, then the parent has to pay.
How do you find an expert?
In our due process hearing we used our contacts from TASH (a national organization) and one of Lou Brown’s graduate students from the University of WI-Madison. This process was repeated several years later when Aaron was in Junior High, and again when Aaron graduated.
We also used local university graduate students and county respite providers when appropriate, ie. They did independent studies to help us design an after-school program and going to the prom.
If you are going due process, find out who the expert is in the area you are challenging.
Check out professional organizations, journals, university faculty. Who is going to know how to do the job? Who is willing to testify? Who will impress the hearing officer?
5. Be BadAss Confident
Know what you believe and how far you are willing to go.
Even if you are uncertain, typically shy and withdrawn–you have to act fearless.
This is your child, This is your class, the time is NOW!
When people see you walking in the grocery or in the school you want them to see you and immediately know what you stand for: “All means All”—“Inclusion means Belonging to the Community.” You have to model what you want others to do.
Build trust, convert the doubters. It can be done–and it’s up to you. And, you will join the thousands of other parents and advocates who have made a difference for one child or many and have moved history and inclusion forward.
Segregation and Inclusion by Zip Code
In my opinion, this is why we need a national policy, federal laws and oversight.
Vulnerable people with disabilities and other minorities should not have to reinvent the wheel, every year, in every city and county.
Do we want individual states and school districts to make decisions about segregation and inclusion?
Would you want to live in Mississippi, Alabama, Louisiana… and I include Ohio?
Different school districts have different definitions of inclusion. I recently visited what was called an “Inclusion School.” To my shock, the principal proudly told me, “Inclusion means EVERYONE in the school is on an IEP.”
After we won our due process hearing, we moved to a neighboring county where the school district shared our values.
The move was the best thing we ever did.
First, after we won our due process hearing, it was like Aaron had a tatoo on his forehead that said, “Don’t mess with me.”
Our reputations guaranteed they took us seriously.
Second, I got elected to the County Board of Developmental Disabilities. One of the proudest days of my life was when I got to make the resolution to close the segregated county school.
Third, because the school district was good for Aaron, it was also
an excellent school district for my other son who had the label of “normal.”
Bottom-up; Top-Down: Baby Steps
You can achieve Inclusion from the IEP process: bottom-up.
But it is easier to work from the top-down.
Try to get on influential committees, or find allies in leadership positions that will work for inclusion. If your school board and/or school administrators embraces the Inclusion paradigm, and understands how this will be better for all students, then you are well on your way.
Try to get inservice for staff, parents—both general and special, about inclusion, differentiated instruction and universal design.
Baby Steps:
I like to think of a yard stick. On the one end is segregation, on the other is inclusion. If I think an action, a decision, anything… is a step in the direction of inclusion–I accept it. There is always tomorrow.
Celebrate each small victory. There were many times when I had to take a deep breath and tell myself, “This is the best we can do today. Be happy.”
I wish I had a magic wand to make it easier for each of you.
Twenty years ago, we thought this would all be figured out and our children would just be children, parents could just be parents, teachers could just be teachers.
There is an old “Up With People” song that says, “Freedom isn’t free. You’ve got to pay the price, you’ve got to sacrifice for your liberty.”
Wishing each of you, freedom, libety and inclusion.
I hope you will share your thoughts in the comments.
Keep Climbing: Onward and Upward
All my best,
Mary
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Note: Since this whole website is about inclusion, almost every article tells part of the story. Some are about school issues, many are about adult issues. Here is a sampling:
