Microsoft word - letter of intent032007revised.doc

Letter of Intent
Revised 3/1/07
Bill's routine:
Bill often has a hard time waking up. On school days you need to wake him up at least an hour
and preferably a bit longer before he has to leave for school. Right now, we leave for school at
7:40 and we wake him up at 6:30. He usually needs to be told two or three times to get up. We
lay out his clothes in the morning on school days so that he doesn't have to take time to think
about what to wear. On weekends we let him sleep in and he usually gets up between 8:30 and
9:30 a.m. We encourage him to pick his own clothes out on the weekends when there is more
time in the morning.
He does not like to eat a lot when he first wakes up. Lately, he has just been having some
grapes or apple slices and a small amount of dry cereal (usually multi-grain or honey nut
cheerios). It doesn't seem like much, but he really doesn't have an appetite in the morning. He
eats well at lunch and seems to do fine all morning at school on the small breakfast he eats. He
takes his pills with a cup of milk. Right now his morning pills consist of 2 B-6 pills, 1 Fish Oil pill,
225 mg of Lamictal. I pack lunch for him every school day. He likes a peanut butter sandwich
(NO JELLY), or a few slices of turkey breast rolled up, or a tuna sandwich with butter on the
bread. He also gets a baggie of grapes, a baggie of goldfish or other snack he likes and milk. I
pack his milk since he only drinks organic. I also provide a weekly half gallon of organic milk to
his classroom in case he wants some more while at school. If home, he eats lunch anytime
between 12 and 1:30 when he is hungry. Bill usually eats an afternoon snack between 3:30 and
4:00 and we usually eat dinner @ 6:00. We try to get homework done after snack so that after
dinner he can just relax. After dinner, he plays with Ben, reads books, plays on the computer
etc. and then at 7:45 goes upstairs to brush teeth, go to the bathroom, and get in pajamas.
They then get what we call "free reading time" until 8:25. They quietly read in their room and
then at 8:25 we bring them a small sip of water, tuck them in and lights out at 8:30. He is a very
good sleeper - sleeps all night with no problems ever.
Self Help Skills
Bill can dress himself, but needs some help picking an appropriate outfit for the weather. Once
his clothes are laid out he can dress himself. May need some help with buttons or other
fasteners. He prefers pullover shirts and t-shirts rather than shirts with buttons. He prefers
athletic pants that he can pull up such as track pants rather than jeans or slacks. He can put on
his own socks. He struggles with tying shoes and we have switched exclusively to zip up or
pull-on shoes. There are enough of these type shoes in the market now that we have decided
to not make him battle with shoelaces. He is able to zip his own coat, but may need help at
times. Using zippers, snaps, and buttons are a continuous goal for him to work on manipulating
them independently.
He needs to be reminded to brush his teeth and wipe his face, but can do these tasks
independently both in the morning and at night. He hates mint toothpaste and uses the kids'
flavors. Right now he is using Kid's Crest - Sparkle Fun flavor. He hates getting a lot of water
on his face and needs a washcloth that is just barely damp. He squirts a small amount of
Cetaphil cleanser on the washcloth and wipes all over his face and then rinses with a damp
cloth. He can do all this himself, but hates it and needs supervision and verbal
prompts/encouragement.
Bill is doing well with taking showers. It has been a long process. He can wash himself fairly
well with the washcloth and can now wash his own hair. He continues to need someone
checking in on him and providing verbal cues to wash and rinse his hair well. He gets upset if a
lot of water goes on his face so rinsing his hair is an issue. He is doing much better with this
these days, but needs someone making sure he is getting it well rinsed. Although we have
been able to transition him to showers for washing, Bill still enjoys taking a leisurely bath. We
call them "play tubbies" meaning he doesn't have to wash himself and can just play in the tub
for as long as he wants. This really calms him and he loves it. He will take "play tubbies"
several times a week either after school or after dinner. Offering a "play tubby" is a good
reward for him when you are trying to get him to complete a task. For example, finish your math
homework and then you can take a "play tubby". In our current house, we have a Jacuzzi tub
and he LOVES this.
He is completely independent with toileting.
Working on helping Bill be as independent as possible in all daily living skills and as he gets
older with understanding money, household chores, shopping etc. all the practical things he'll
need to know in adulthood should be a constant focus.
Food preferences:
Bill is a picky eater and has a limited, but healthy eating repertoire. Fruits: Apples (sliced) - Gala or golden delicious Grapes - Red, seedless Peaches - canned slices Bananas Veggies/sides: Green peas Corn (canned or on the cob) Raw baby carrots Raw broccoli Potatoes - boiled with a little salt and cubed or French fries Any kind of pasta with melted butter, plain rice Meats/Protein: Peanut Butter (loves a spoonful of peanut butter with his breakfast or as a snack. He likes peanut butter sandwiches without jelly) Roast Chicken - white meat slices Hot Dogs - cut into round pieces - no bun Tuna - likes it mixed with mayo and just formed into balls that he pops in his mouth and has just started eating tuna in a sandwich on buttered bread Turkey Breast - cold cuts - he doesn't like it on a sandwich just rolled pieces of turkey Chicken Nuggets Ground beef - he likes cheeseburgers, but only if it is with Yellow American cheese, he also likes spaghetti with browned ground beef in the spaghetti sauce. Bagels - loves them with cream cheese on one slice and butter on the other and eats them open faced Pizza Snacks: Potato Chips
Goldfish crackers
Peanut Butter Ritz Bitz
Pop Tarts - only Cinnamon/Brown Sugar
Sugar, Peanut Butter Cookies, or Oreo cookies
Drinks: Bill prefers milk or water. He will drink juice on occasion. All his dairy products are
organic. (Eggs, Butter, Milk, American cheese)
Bill does not like foods that are mixed such as casseroles. He is getting better at tasting new
foods and this is a goal we are always working on. Please don't push him or rush him into
eating lots of different foods. Please slowly ease him into trying the different foods your family
eats.
Activities:
Bill is a very low activity/motivation kind of kid. He would be content just sitting or wandering if
we let him. We have worked hard at getting him to pick activities to do and also to occupy him
with meaningful activities and in the last six months he is doing very well. You will need to help
him choose activities and encourage him to stay engaged at times. He enjoys reading books to
himself and to us, enjoys puzzles, playing on the computer, watching television, building with his
Kidnex sets, dot to dot books, blowing bubbles and playing board games. He loves to play all
board games - his current favorites are Sorry, Race to the Roof, Pokeno, and Balloon Lagoon.
He used to love going to parks and playgrounds and swinging and climbing , but lately he just
wants to sit on the bench. We are definitely trying to get him more engaged at the playground.
Bill loves hiking in the woods and loves playing in creeks and wading in waterfalls. He loves
listening to music. He does not enjoy team/competitive sports, but likes throwing a ball around,
having a catch with large balls, shooting hoops, and hitting street hockey ball to someone or into
a net.
His motor skills and motor planning are lacking and he needs help negotiating motor activities.
He currently uses training wheels on his bike and has difficulty with steering and the strength to
pedal up inclines. He enjoys the bike, though and the ultimate goal for him is to be able to ride a
bike without training wheels someday.
Bill is currently involved in a music therapy and a social skills group. We would like him to be
involved in, and feel he will need, similar groups throughout his life. We would also like him to
have the chance to try a musical instrument. He is learning the recorder at school right now and
enjoying it. We would also like him to be enrolled in some kind of movement skills class if
available in your area. Such as an adapted gymnastics or motor skills class or even karate or
something like that.
He loves to take bubble baths - they relax him - please allow him to take one every day if he
wants. Please take him on hikes, wading in creeks and expose him to nature informally and
through classes if available in your parks and recreation program. The sky is the limit when it
comes to spending money on books - please buy him new books regularly - he loves reading.
He loves learning about and tracking the weather and the phases of the moon. We have helped
him learn how to access Accuweather on the computer and he checks it a few times each day.
We also found a site - Farmer's Almanac - that can tell you the times for Sun and Moon
Rise/Set as well as the phases of the moon for each month. He loves checking this site, too.
Nurturing friendships is a constant goal for him. He likes when a "friend" comes over, but never
really initiates or maintains a friendship. It would be great to nurture friendships either with a
typical kid that shows an interest or seems particularly kind or with another child with High
Functioning autism that he meets in a social skills or other group. Invite the friend over whether
Bill asks for this or not and try to encourage friendships. When he gets older, you might even
find a college student or young adult that you could pay to take him out into the community and
do fun things such as movies etc. The ARC here has a volunteer program called Community
Partners that helps get people with disabilities out of the house and doing things with a "friend".
See if there is such a program in your area. The ARC (formally the Association for Retarded
Citizens and the Autism Society are two national agencies that should have chapters in your
area and can be very helpful.
Religion: We realize it would be difficult to raise Bill and Ben as Unitarian Universalists while
you are all Catholic. We are giving our permission for you to raise them Catholic with the rest of
your family. They have this foundation and know all about Jesus' life and some of his basic
teachings such as "Do unto others…" However, please expose them to other world religions and
help them to have open minds when it comes to the merit of other beliefs.
Medical info.:
Other than his seizure disorder, Bill has been very healthy. He is rarely sick and sees the
pediatrician once a year for a check up at most. We go to Jones Pediatrics and their # 800-836-
xxxx. Our primary doctor there is Dr. T.
He sees the Neurologist twice per year or more, if necessary. In the morning, he takes 225 mg
of Lamectal with the 2 B-6 pills and the 1 Fish Oil pill. At dinnertime he takes 225 mg of
Lamectal and another Fish Oil pill. We keep all this medicine in the drawer to the right of the
pantry in the kitchen. Bill is very good at swallowing all his medication. His medication levels
change throughout the year so calling the neurologist to get the most current meds and doses is
advised. His neurologist is Dr. H in Asheville and his # is 828-252 xxxx. Please find a good
pediatric neurologist in your area. He is currently having two-three seizures about every 8
weeks or so. They are called partial complex seizures and are very mild and can be hard to
detect. He usually starts smacking his lips like he is very thirsty, his eyes get wide and his body
may be a little fidgety or shaky. They usually last about 30-60 seconds. He is fairly alert
throughout and can answer questions like, "Are you having a seizure?" Or "Do you need some
water?" He is usually pretty tired afterwards and will often nap for an hour or so following the
seizure - sometimes he is able to remain awake. We record his seizures in a small green
notebook that is in the drawer to the left of the pantry in the kitchen. I usually only call Dr. H to
report the seizures when he has two or more in one week. I don't call about random single
seizures - I just record them in the book for future reference and discussion at the semi-annual
appointment. Bill appears to be a decent candidate for brain surgery to cure the seizures so we
are thinking about taking him to an Epilepsy Center for a rigorous evaluation. There are
Epilepsy Centers all over the country and you can research them on the Epilepsy Foundation
website. We are very reluctant to go ahead with surgery since his seizures are few and mild,
but will most likely at least go for the evaluation to make an informed decision. If any of this has
not taken place when he is in your care, I strongly suggest getting the evaluation. Unfortunately,
we can't tell you what to do about possibly going forward with the surgery. I know that you
would do tons of research and consultation and make the best decision for Bill. We are mostly
concerned with his quality of life. If a few mild seizures are all he has then the risk of surgery
may not be worth it since his seizures are not severely affecting the quality of his life. I know
that you will make the right decision.
Educational info.: Bill is currently functioning on a 1st to 3rd grade level. Reading is his
strength and he has difficulty with Math. He needs a lot of structure to learn. He currently
attends Valley Elementary School and is in a multi-categorical special ed class. The lead
teacher is Dona W. She and all the teachers are awesome and can be a big help to any new
school. The school phone number is 828-293-xxxx. He has a good balance of one-on-one
academic work in the special ed room and then is mainstreamed with a regular 4th grade class
for music, art, library, and reading. The hope is that he will be mainstreamed more and more as
he gets comfortable. Another person who knows his learning strengths and needs and will be a
big help is his former teacher, Kathy D. Her phone number is xxx-xxx-xxxx I would use trust
money to pay for Kathy to visit his new school and help them with structuring his needs. It is so
hard to say at this time what he will need in the future. All we can say is that our goal is to help
him at an early age - 12-13 to start identifying skills and interests that may prepare him for a job
in which he can feel productive and happy. 12-14 is not too early to start exploring this with a
child who has special needs. Look into the local supported employment programs/vocational
rehab agencies - see if they will help him with job search and job coaching in a part time or
summer situation while he is still in high school. We are also hoping that he will eventually be
able to live independently as an adult. At what level he'll be able to handle this no one can
know now. I know of high functioning adults with autism who live as roommates in an apartment
while family members and professionals from TEACCH or other service agencies check in on
them and help them with goals, budgeting etc. This sounds great to me! If he can be even
more independent - great.
Behavioral Information: As you know, Bill is such a lovable, affectionate, fun loving guy. He
loves to be silly and giggle. Valerie, you already have such a great relationship with him and
really great instincts with him - trust those instincts and pray for patience! He can be very
frustrating because he perceives the world so differently and gets upset about things that you or
I wouldn't think twice about. Since he is not very expressive verbally - it is hard to figure out
what has made him upset or angry or what problem he is having. Although, in the past 6
months he has become much more verbally expressive and can often say things like, " I am
nervous about that" or "I am mad because…" The best way to deal with this is to stay calm,
acknowledge his anger and then leave him alone. He will most likely go to his room to "cool off"
or just put his head in his hands. If he doesn't, you can suggest it. A lot of verbal
communication with him when he is angry or upset just makes it worse. The impulse is to try to
talk to him about it and "fix" things, but all this talking and attention at the moment he is upset or
angry usually just escalates things. Just give him space and leave him alone. Nine times out of
ten he comes back to you calmly and when you ask, "What made you upset?" He will be able to
express it and talk it out. It really is amazing how he has learned to remove himself to calm
down and then his willingness to discuss the situation afterwards.
He knows right from wrong and is used to being disciplined with a time out or a privilege being
taken away when he does something wrong. Do not baby him because he has a disability - he
can learn right from wrong. Please keep in mind, though that his judgment and impulse control
is developmentally below his age level. Right now he is 10, but his judgment is probably at a 4-
5 year old level. If he gets the impulse to rip something up - he will. He may throw something
in the toilet or damage something in other ways if he thinks it would be fun or cool to watch. He
may get fixated on something if it spins or shines a certain way. It is hard to balance allowing
him to be "autistic" and teaching him to act in a socially acceptable way. Please let him be
"autistic" at home if he needs to be sometimes. If he wants to drop a shiny object a thousand
times in a row - let him - it relieves stress. Just teach him that there is a time and a place for
such activities. Because his judgment is not to his age level, you do need to keep an eye on
him more than you would someone else his age. If he is somewhere else in the house, just peaking in on him every once in awhile will keep him in appropriate activities. He goes through little obsessions from time to time. For a while he was using the bathroom constantly. Then he was afraid to eat in public. He has since recovered form these fears/obsessions, but there will always be more. Try not to make yourself crazy when he is in a phase like this - he usually stops the obsession on his own in time. You can address it, but don't get too caught up in it thinking if you don't force it the obsession will stay forever - they never do. For example, when he was afraid to eat in public, we talked about how other people are busy with their own food and friends and aren't looking at him, how they may glance at him just because he is so cute, but they are not concerned with him. We also kept going out to eat with the knowledge that we may have to leave if Bill got uncomfortable or that he may not eat and we'd have to bring the food home for him to eat. He got over it - loves to eat out now. Most of the time he is pretty easygoing. You need to prepare him for new situations or people. Just talking it through is usually sufficient. Kathy H from TEACCH 919-966-xxxx or Kathy D whose number is listed above can be extremely helpful in dealing with Bill's behavioral issues. Please ask them for help. Please use trust money to give yourselves a break. Find a respite care program in your area or a college student studying education or counseling who can baby-sit and/or take Bill out a few hours per week. He has two developmental therapists that take him out and work on community skills each week. They are through the ARC here in Jackson County. Our case manager is Melanie S and her number is 828-342-xxxx She may be able to connect you with a similar service near you.
Ben
Routines
Ben wakes up early, usually @ 6:30a.m. on weekends and will watch TV and hang out until
others wake up. During the week his morning schedule is the same as Bill's except Ben gets
up happily and raring to go. He gets dressed, eats, brushes teeth and puts on shoes
independently and with very little prompting. He will ask for snacks all day, but he only gets one
after eating a good lunch and dinner and in the late afternoon @ 4:00. His bedtime schedule is
the same as Bill's.
Self-Help Skills
Ben can dress himself completely. He may need some help choosing appropriate clothes. He
is completely independent with tooth brushing and toileting. Just may need to be reminded to
brush and wipe face. He is taking showers independently, however, we still find the need to
peek in on him and make sure he is washing hair and body correctly. He also does not like a
lot of water in his face, but is doing much better. Ben likes to have his towel hanging near him
and then he can wipe his eyes dry on his own if he needs to do so. Ben is getting more and
more independent in the kitchen. He knows how to use the microwave, he gets his own snacks
and makes the Easy Mac macaroni and cheese himself. He needs encouragement to continue
to expand his kitchen skills.
Food:
Ben is also picky and eats basically what I put down for Bill. He has some additions - he will eat
macaroni and cheese, beef ravioli, fish tenders, ham, mandarin oranges, and jelly with his
peanut butter. He does not drink milk so we give him Orange Juice plus calcium. Please go
slowly with introducing new foods to him. Ben LOVES to snack and would eat all day if we let
him. Please encourage him to make healthy food choices while allowing him to have treats from
time to time.
Activities:
Ben LOVES music. He loves to sing and play piano. His piano teacher is Andrea A and her
phone number is 828-631-xxxx. Please nurture and encourage this love of music. Please use
trust money to give him music lessons - piano or any other instrument of his choosing. Please
let him join choir at church if he wants to do so or find other musical outlets in your community.
He is also really enjoying performing - please find him a theatrical outlet in your community -
possible drama club or classes. Ben also loves to swim. Right now he is in an Advanced
Beginner class. He hates getting his eyes wet and uses goggles at all times in the pool. He has
come a long way having year round swimming lessons - please find him year round lessons
and take him to the pool a lot in the summer.
Ben enjoys books, puzzles, word searches and other word play games, board games, playing at
the playground, hiking, playing in rivers and waterfalls, playing on the computer, and watching
TV. He is not the most coordinated and does not enjoy team sports, but like Bill enjoys learning
and playing at home one-on-one with Daddy or Mommy. He occupies himself very well and
enjoys quieter activities. He enjoys other kids and will often hook up with other kids at the park
and play very well with them. Ben does not really ask to have friends over and is not the most
outgoing so please keep an eye out for children he likes and nurture friendships for him, setting
up play dates etc. with children you or his teachers observe him interacting with well. Ben
LOVES magazines and gets 4 subscriptions: Highlights, National Geographic Kids,
Nickelodeon, and Family Fun. He eagerly awaits them each month and reads them cover to
cover several times. He learns a lot from these magazines and also gets great ideas for family
activities. Please continue these subscriptions or others he may become interested in receiving
as he gets older.
Medical info.:
Ben is extremely healthy and rarely sick or to the doctor. He has inherited the family skin
problems and gets a dry patch and rash on his face and back of his arms often in winter. We
use Dovenex cream sparingly on his face that the doctor gave us. The cream is in the medicine
cabinet in the boys' bathroom. He gets a multi-vitamin that has added calcium every morning.

Educational info.:
As you know, Ben is a very intelligent, curious learner. He is very articulate and above grade
level in every subject. Even though he is in 2nd grade, he scores up to the 7th grade level in
reading, spelling and language arts and is at a 3rd grade level in math. He is a voracious reader
and very curious learner. Please nurture his love of reading and learning. He loves to go to
museums. Please advocate for him to get advanced work in school/gifted programs if this
continues to be appropriate. We fully expect Ben to go on to college - please keep him on this
path. Right now he says he wants to design and build cool amusement rides when he grows
up. We think the sky is the limit for him academically and so teaching him how to be
appropriately social with colleagues and team members is so important. He does have some
issues with flexibility - difficulty with transitions and wanting to learn what he wants to learn and
not with the group. He is fully mainstreamed in a second grade class at Valley Elementary. His
teacher is Miss F and the number at the school is 828-293-xxxx. Another good resource is his
former teacher - Kathy D who we mentioned above in Bill's information.
Behavioral:
Ben is a great kid! He is so loving and sensitive. He is an incredible brother to Bill and has
really taken on the big brother role already. He will be a good resource and help to you
regarding Bill. He can be stubborn and engage in debate over things he doesn't want to do. It
is best to just say, "Enough, Ben this is what we are doing…" rather than engage back and forth
in debate. For the most part, Ben is eager to please and follows directions very well and without
much prompting. He eagerly completes his homework each day needing hardly any help at all.
He is less enthusiastic about practicing piano. We have started a piano practice candle and he
loves this and it is motivating him to practice every day. We light a candle right before he starts
practicing and then he blows it out when he is finished. When the candle burns all the way
down he gets a treat like going out to lunch. Ben actually found this idea in Family Fun
magazine and asked if we could do it! His sensitivity can be a liability when it comes to other
kids being mean, but he is learning to stand up for himself. I find him to be a lot like Thomas
and so I know you will be able to understand Ben and help him navigate the world.
Helpful Contacts:

Friends:
Anne C: xxx-xxx-xxxx - Anne is a very close friend and has known Bill and Ben since birth.
Karen and Ed K: xxx-xxx-xxxx - our oldest friends in NC, they have known Bill and Ben since
birth and their children are friends with the boys.
Diane R: xxx-xxx-xxxx - Diane has known Bill and Ben for 6 years and also has a son with
autism. She would be an excellent resource.
Liz Y: xxx-xxx-xxxx - Liz has known the boys for 6 years and her son, Alex, is a friend of Ben's.
Sarah S: xxx-xxx-xxxx - She is a graduate student and baby-sits for us. The boys love her and
she knows their routines.
Missy H xxx-xxx-xxxx - Missy used to tutor and baby-sit the boys in Durham. She is incredible
and knows them really well. She would be a good resource and willing to help in any way.
Kathy Dolbee: xxx-xxx-xxxx - former teacher and friend
Professionals:

Dr. T - Pediatrics 800-836-xxxx
Dr. H - Bill's Neurologist 828-252-xxxx
Creek Veterinary - 828-586-xxxx
Kathy H - autism specialist at TEACCH 919-966-xxxx or 919-544-xxxx - she knows Bill very
well
Melanie S - Case Manager at ARC of Jackson County - 828-342-xxxx or 828-631-xxxx - she
is Bill's case manager and helped us get respite and developmental therapy. She could help
with transition to an ARC in your area.
Dr. R - Dentist - 828-488-xxxx
Dona West and Jenny F - xxx-xxx-xxxx - teachers
Dona West Home number: xxx-xxx-xxxx

Source: http://www.seangodwin.net/files/70485/Letter%20of%20Intent.pdf