Archive for the ‘Parents’ Category

Grandma gets a Thong

The twelfth day of Christmas is actually Jan. 6th–Little Christmas, The Feast of the Magi.

Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.

Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)

I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.

My mother is 89.

Recently she’s had hip replacement surgery and has trouble shopping for herself.

Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT

Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT

She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.

I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT

She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8′s and 9′s and 10′s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT

She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT

The next three stores didn’t have black or whole foot slippers. But they did have navy.

You know where this is going, right?

Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.

So, it makes you wonder.

Was the gift really about slippers at all?

Grandma and the Thong

The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT

She also gave one to Grandma.

The gift became an urban legend in our family. It brought down the house.

Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.

Which again makes me wonder about gifts.

Aaron’s Christmas Gift and Charity

This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.

This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.

There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.

At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.

Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.

Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT

The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT

The slippers were size 11.

Aaron wears a size 9.

Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.

And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?

Is “Just getting something to open” the point? Even if they can’t use it?

What is Charity?

If you plan a charitable event and are giving gifts:

Don’t

Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.

Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.

Don’t give them things you couldn’t sell or are broken.

Don’t make your interaction a one-time-event.

Do

Do have a party with chairs and refreshments for everyone.

Do get to know people as individuals

Do think about what YOU would want to get

Do think about normalization, age-appropriate entertainment and gifts.

Do think about transportation and staff and family members

Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.

Keep Climbing: Onward and Upward

Mary

Comments:

Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????

For anyone who buys gifts for a person with autism or a disability, here is a fun twist on the classic poem which shares some of the reasons it is so difficult to find the perfect gift.

Cindy Waeltermann, is the founder of AutismLink and gives us permission to reprint her poem on behalf of her two children who are adults with autism.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Thanks to Trish Doerrler, a parent of a child with autism, for sharing this poem on her blog In so many words.

Hope you all have a fantastic Holiday, with lots of precious moments.

Aaron’s Favorite Gifts

This year we are getting Aaron a tape/CD player because Aaron thinks listening to music is an active sport. He loves putting the tapes (yes, tapes) in and out. We can find tapes in used book stores. They are usually pretty cheap, but that is great because then when they only last a couple days, they can be replaced. The hardest part will be to get the staff to understand the batteries are rechargable and should not be thrown out.

Aaron also likes to lick and flip baseball cards. He especially likes the ones with cheerleaders:)

I wish we had a longer list. He really isn’t impressed with new shirts and underwear.

Keep Climbing: Onward and Upward.

Mary

Comments:

Which gifts work for your child? especially adults with autism or other disabilities? Are the gifts age-appropriate?

Here is one of our most popular posts. Relax and make an individualized ENJOYMENT plan for your best holiday ever.

Mary

Easy as I.E.P.

Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Want to enjoy the holidays?

Of Course.

Easy as I.E.P.

Don’t laugh. I.E.P.’s were developed because they are good planning tools. Some people are intimidated or challenged by the I.E.P. in Special Education. One way to demystify the I.E.P. process is to use it in our everyday lives. So, stick with me for a minute while we look at how this can work in real life.

Let’s use the Individualized Education Plan to create a holiday planning guide.

The first part is to create your Dream Plan of what you want. Then we plug in the basic parts of the I.E.P.: Evaluation, Annual Goals, Short term objectives, Related Services, Placement, and circle back to the Evaluation for the next I.E.P. for next year.

Dreaming of YOUR perfect holiday

Everyone’s perfect holiday looks different: Grandma’s turkey feast, or make that a roast goose, or Uncle Bob’s ham and sweet potatoes, or a vegetarian, or Kosher, or vegan, or gluten-free …

Everyone has different expectations, traditions, time and money constraints. So forget the Women’s magazines, forget what your Mother-in-law wants, forget what happens on the Food Channel and Martha Stewart show.

We don’t care about “Everybody.”

The beauty of the I.E.P. is it is individualized. It is for You. Not your mother, your children, your boss…YOU! This is YOUR moment, your freedom, just YOU–what do you want?

Action Step 1: Visualize a Dream Holiday

Take a deep breath and picture a smiling yourself surrounded by your favorite people, doing what you really want to do. Ahhhhh.

Are you skiing down a mountain? Are you sitting by the fireplace listening to Bing Crosby? or Lady Antebellum? ….

What would make this a joyous holiday for you–with just the right balance of work and relaxation?

What were the strengths and weaknesses of previous holidays?

Do you want to start any new “You” traditions, new family traditions?

Define your dream plan (see related post)

Feel empowered to do it YOUR WAY. This is your holiday gift to yourself. You deserve it!

Don’t you feel better already? This holiday is going to be the best.

Dream Plan:

1. Take a sheet of paper and fold it into four squares: Wants, Needs, Likes, and Dislikes.

2. Fill in the boxes based on YOUR Individualized choices.

If you are feeling pressure because others are trying to get you to do something you don’t want to do, be polite but tell them to make their own IEP. Empower yourself! I know this is hard for me and most Moms.

3. Circle your five top priorities and they will become your goals.

For example: Want live tree. Need family to be together for dinner. Loved shopping with Aunt Ruth. Hated the last minute rush….

One Priority goal: Need family to be together for dinner.

Making a decision is the first step. What do YOU want? What would bring YOU joy?

EVALUATION:

Since there is no standardized tool to measure the
holidays–no HFA (Holiday Fun Assessment) or HQ (Happiness Quotient)–we will create an informal evaluation tool based on ecological assessments.

GOALS:

–

LONG TERM GOAL I: To have a traditional, homemade turkey dinner with family members on Christmas Day.

Do we want to raise the turkey and grow the corn for the stuffing? Serve the strawberry preserves from your summer garden? Do we want to skip the preparation and order in? Or go out to eat? So many choices?

If we decide to keep this as one of our goals, then we must break down our long-term goal into measurable, observable steps.

Mom decides she wants to cook the Christmas dinner and eat at home.

SHORT TERM OBJECTIVES:

“Short term objectives are merely small steps that enable us to get from where we are now to where we want to be by a certain date.”

A. Mom will finalize the menu by December 10.

B. Mom will make the list and complete the shopping by December 15.

C. Mom will prepare the dinner by December 25.

Each of these short-term objectives can be “task analyzed” and broken down into smaller parts.

We know these are important steps to reaching our goal so they must be completed with 100% accuracy. (75% completion of the meal may leave some family members hungry.)

Goal Two:

LONG TERM GOAL II: To have the gifts wrapped and under the tree by December 24.

SHORT TERM OBJECTIVES:

A. Mom will purchase all supplies by December 10.
B. Mom will supervise the gift-wrapping by December 15.

Task Analysis example:

Mom will supervise:

1. Billy will cut the paper.

2. Dad will wrap and tape the gifts.

3. Susie will add the bow.

4. Tommy will place the presents under the tree.

Notice in the Task Analysis, family members with different skill levels can all partially participate.

RELATED SERVICES:

—“Developmental, corrective and other supportive services to enable you to reach your goals.”

To achieve Goal IC –“Mom will prepare the food by December 25”—Mom will need the following supportive services:

Consultant: Grandma has the expertise to bake and bring perfect pumpkin pies.

Consultant: Aunt Jane will come early to help in the kitchen.

Community Resource: We will purchase the local bakery’s famous dinner rolls.

PLACEMENT:

Now that we have written our IEP we must determine the least restrictive environment for accomplishing our goals.

We could cook and wrap the presents at Aunt Sara’s and bring
everything home, but to meet Mom’s goals on this particular IEP, her own home is the least restrictive environment.

Remember any IEP can be revised or modified at any time. For instance, if Paula Deen wants to invite my family for a holiday dinner, I would change these goals in one butterfat minute.

Happy Holidays

I hope using the I.E.P. process not only makes it easier to understand, but I hope it can be a tool for you to have a magical holiday season.

Well, what do you think?

1. Do you better understand the IEP process?
2. Would this process be useful for everyone?
3. Does anyone raise turkeys?

Keep Climbing: Onward and Upward
All my best,

Mary

Other posts you might enjoy:

Celebrating St. Nick and two special sons.

Balancing My child’s needs and my needs

Celebrating St. Nick and Two Special Sons

"The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there."

Family Traditions:

Because of our German heritage, St. Nicholas’ Feast day on Dec. 6th was the start of the Christmas season. The tradition of putting out our socks (or shoes) was always great fun.

Aaron, our son with the label of autism, and Tommy, our son with the label of normal are now 36 and 35 years old. Last post I wrote about how our holiday celebrations are evolving: St. Nick meets Disney Princesses.

Old Traditions

The first year we were married, my mother-in-law Jean, hand-made Christmas stockings for our mantle. Of course, we were living in a small apartment with no fireplace or mantle, but it began a family tradition. You know this was a long time ago because while Tom’s sock was a typical crew man-sock, mine was shaped like silk hose plus garter. (Do they even make those anymore?)

To personalize the stockings, Jean lovingly sewed small schoolhouses on both of our stockings because we were teachers, adding a felt wedding ring on mine and a felt set of golf clubs on Tom’s. When I was pregnant, she made an “Our Grandbaby” sock for Aaron who was going to be born in December. Later I store-bought some Christmas stockings for both my sons but glued and sewed some Christmasy trim on the socks.

Now a generation later, I captured our family’s own Norman Rockwell moment—Isabella pointing to the “Our Grandbaby” stocking on our mantle.

Making New Family Traditions

Lots of families put up Christmas stockings, some find stockings that are personalized with each person’s name, or hobbies, or interests like socks for dog lovers, Barbie dolls, sports fans, or ….

But, our family made the old tradition our own by adding a token of some special moment each year on St. Nick’s Feastday.

Adding a Memory a Year

Throughout each year, Tom and I look for small tokens and give them to each other on St. Nick’s Day.

Vacations and trips were easy. There were always ready-made patches, pins, buttons we could pick up at souvenir shops. Scouts, school events, sporting ribbons and awards also were small and could be easily attached to the socks. We even added some mementos inside the socks, like Tommy’s business cards for each new job and Aaron’s first pay check. Now the front, back and inside of the socks carry magic moments to remember.

Our socks have become treasured scrapbooks of our lives.

Tommy's Christmas Sock 35 Years

Aaron's Christmas Sock 36 Years

What do you think? Does this tradition meet the test of inclusion+ normalization? Are Aaron and Tommy’s socks alike? Age-appropriate? Do these socks also celebrate their individual gifts and interests?

You can see Aaron’s Trolley Bus pin from our trips to the Smokies, the pin from Carlsbad Bat Cave, his school bus and Lakota Pin, his prom key chain, his Boy Scout patch from Woodland Trails, a horse pin from Cincinnati Riding for the Handicapped, National Park patches where he hiked with our family…

Tommy has Boy Scout pins, school patches from the cross-country team, buttons of him looking fierce in his junior high wrestling uniform. Tommy also hiked the same easy trails in the National Parks but those patches were not the same accomplishment they were for Aaron. Tommy was proud of his week in Philmont and the more difficult mountain hikes on the Appalachian Trail with his dad…

So both Aaron and Tommy had hiking patches. The difference was the intensity, duration and difficulty of the trails.

Both were proud accomplishments.

Transition

Tommy’s wife, Ana, bought Christmas stockings for their first Christmas together. Each year I give them some token to add to their sock. This year, Ana became a United States Citizen. After the ceremony the Daughters of the American Revolution passed out little flag pins. I asked for an extra one, planning to add it to her sock.

Aaron just moved into his new house, I have stockings ready for his first house decorating party, he will get a house key on his sock.

And so the tradition continues:

“The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there.” (Night before Christmas)

Wishing you many happy memories this holiday season.

Keep Climbing: Onward and Upward

Best,
Mary

Comments

I hope you’ll share some of your family’s holiday celebrations. Is this an idea your family can adapt? Does your family celebrate St. Nick’s or have some unique tradition?

Other stories you might enjoy:

Tale of Two Brothers: Sibs of People with Disabilities

Circles of Life: Family Reunions

St. Nick and the Batman Socks

St. Nick and the Batman Socks

Last year, I shared my story about St. Nick and the Batman socks. I told you I would give the Batman socks to our granddaughter when she went to kindergarten.

Well, as you can see in the picture above, Isabella picked the Batman socks right off our tree, made a face…and a new family tradition began.

As we learn in early childhood and special education, we take our cues from our children, right? Use those “teachable moments.”

New St. Nick Traditions

I don’t know if Tommy and his family will decide to put Isabella’s worn socks on their Christmas tree, but I’ve been trying to figure out how to continue our St. Nick’s tradition of fun plus lessons in diversity, inclusion and building community.

I’m not sure it will work, because two year olds are pretty young to understand sharing, but I’m thinking of giving Isabella two sets of Disney Princess socks for St. Nick’s.

One for her, and one to share.

I don’t want this to be a “charity” or “pity” model, but rather a gift of joy. I have read research which says giving is the best present you can give yourself.

Charity is tricky. I want Isabella to learn that she is giving a gift. It is something she would like, it is pretty and new (or gently worn), she can try to envision what the new little girl will feel like when she gets it.

If all goes well, this can be our new tradition.

Who doesn’t need a new pair of socks?

And even though the Disney Princesses are all young and beautiful, they are from different cultures and had to overcome some diversity, right?

Hopefully, the story of “St. Nick and the Batman Socks” will become a cherished tradition…and will continue to teach about diversity, community building and inclusion. And hopefully, our precious little Isabella will also learn about giving and sharing with others.

Comments:

Want to take bets? How will this little experiement work? Do you have any holiday traditions that promote community building? Do Disney Princesses rock?

Keep Climbing: Onward and Upward

All the best, Mary

Check out these other posts about the Holidays:

Grandma Gets a Thong

What is Charity and Love?

Thanksgiving: A song about autism

Kill the Turkeys: Life lessons for people with disabilities.

Thanksgiving: Inclusion and Interdependence

We have a house!

Amazing News: A House and Roommate| Part 12

Miracles Do Happen:

Last week, a non-profit agency bought a house near our home. They will accept Aaron’s HUD housing choice rent voucher.

Today, we met with a young man and his mother and we think we found a roommate match.

Miracle Triangle:
House/HUD–Roommate–Residential Staff

For those of you who have been following our journey to move Aaron, our son with the label of autism, home to our county, this is Part 12. You know how complex and difficult this has been. Here is the link to Part 11: 1st miracle| Aaron needs a Roommate| Part 11.

Even with the two miracles, don’t breathe yet. But we now have two pieces of the triangle in place.

The third part of our miracle triangle is great staff. I’ve talked about the critical importance of staff in Caregivers: Part 1, 2, 3

But as Scarlett O’Hara says, “I’ll think about that tomorrow.”

Here are the details in two emails: one from early this morning (2:30 AM—mothers never sleep); the second is after our dinner meeting (9:00 PM—mothers put in long days).

Task Analysis for Monday Morning:

From: Mary E. Ulrich [mailto:marye.ulrich1@gmail.com]
Sent: Monday, September 26, 2011 2:28 AM
To: Everyone I could think of who might be part of this move
Subject: Aaron’s house

Hi Everyone,

I met with the director of the non-profit on Friday. He said they closed on the new house last Monday and so we can begin the countdown to a move-in date of Nov. 1. Yea, Yea!

Thanks to the Non-Profit and the County Board of DD for making this new resource available to Aaron and our community.

So now there is much to do to be ready by Nov. 1st.

HUD

The director of the non-profit is finalizing the paperwork to become a HUD landlord in W. County. There will need to be an inspection and he is negotiating the rent…. As soon as we get Aaron’s roommate, we will be applying for three people and a 3 bedroom subsidy (Aaron, roommate and caregiver.) This is what Aaron has had in our past County for the last decade, so I think this should be pretty cut and dry. It is an accommodation under ADA, but is different than the rules for HUD’s definition of “caregiver.”

We have received HUD extensions until Oct. 31st. It has been a lot of running around between counties, but Debbie and Wendy have both been wonderful caring professionals. Thank you for helping me figure out the system.

Notices

I need to give notice to everyone in our current county and the current provider by Oct. 1st, which is fast approaching.

I’ve given the notice about moving to Aaron’s current landlord.

This will not come fast enough. Aaron had another “unusual incident” last week where he was not groomed for his day program. (The food he got in his hair on Monday was still there on Wednesday—the staff felt he had not had his hair washed in two days and it was dirty and grimy.) Also, Aaron is running out of transportation money to his day program.) Tom and I are taking Aaron up on Monday mornings, and usually picking him up one afternoon a week.

House Remodeling

The director of the non-profit says they closed on the house last week and will begin the remodeling shortly. They are starting with some tree trimming because of the possible danger and then will refinish the floors in the Living Room, Dining Room and move on to the bathrooms. If everything works out well with HUD and we get the caregiver’s designation for the third bedroom then there may be enough rent money to justify new windows (the current windows are casement windows—inefficient and BAD). They are reluctant to begin the bathrooms until we know who the second roommate will be. This makes sense if we want to make accommodations which are specific to the person needing the bathroom.

I think this is a great way to begin because we will want to show the community we will be great neighbors and take care of the house before the rumors begin that two men with intellectual disabilities are moving in. This is what worked on Aaron’s current residence and I have too many memories of Stetennius, Five Mile and other hearings from worried neighbors. It is a mature neighborhood, I don’t expect any problems, but we want to make a good first impression.

Tom and I will be planting some mums and have a couple inexpensive porch chairs to make the place look lived in. The house has been vacant for a long time so a few improvements should impress the neighbors.

Potential Roommate

I am hoping to hear from the parent of the potential roommate today, and then can set up some visits. This is the next big step.

Then, I understand from the new county board, we will finally get a case manager.

Transition for Aaron

We have been driving Aaron by the house and telling him it is his new home, but I can’t imagine he understands what we are talking about. I’m worried he will miss his roommate of the past 13 years and am sure he will be confused. I want to start some visits to the house as soon as possible. The more familiar he is, the easier the transition.

I’m hoping he will get to have a couple meetings with the new roommate and new staff as soon as possible.

Furnishing House

We also need to figure out how to furnish the house. I have begun to take donations from relatives. We probably have about $1000 set aside.

Tom and I furnished Aaron’s first two residences. We are told that if the furnishings belong to Aaron he can take them with him, but I am uncomfortable just taking the silverware out of the drawer and telling them, “Sorry, this belongs to Aaron.” We have enough problems with the current staff as it is and we don’t want to cause problems for Aaron’s current roommate. But, it is expensive to start a new house from scratch.

My family will be having a shower to donate items sometimes this month. I will have to coordinate with the director of the non-profit when we can get a key and get into the house and it’s not a Bengal’s game (if there are any Bengal fans left in Cincinnati by then).

I’m hoping we can set a corner of the garage or one bedroom to begin collecting items.

I began with a couple boxes in Aaron’s current residence and the staff (without permission) gave them away. “What would you do? Case of trash vs. treasure”. (I’m still VERY upset about this. Just add it to the list of why I want to get away from them ASAP.)

New Agency

Next week I will begin interviewing residential providers. They will need to hire and train staff by Nov. 1. We have met 3 different providers as we visited the 3 potential placements for Aaron. One company impressed us because it was a local company in Mason, but we are open to suggestions. Please email me ASAP. We are well aware that just because a company was good last month, doesn’t make it good this month. Having caring staff will be the second most important variable, after a good roommate.

Well, we have a busy week ahead. Please say a prayer we sell our condo, it is a huge strain on us. We listed it with another agent last week. We have begun to move some of our things into our new condo.

I’m hoping by Christmas we can look at both Aaron and us in our new homes and know we are in a better places, but GEEZ, it’s going to be an action packed couple of months.

Thanks to everyone for helping make this happen for Aaron. Maybe the Bengals could learn from all our teamwork

Any questions please let me know. Have a great week. Mary

About 1:00 PM, the mother of a young man who might be a prospective roommate called on the phone. That went well so we picked up Aaron at his day program and all met for dinner in a local restaurant.

Email to same group at 9PM.

Tom and I always felt one of the most important steps was finding a good roommate for Aaron. We think we have found a good match.

Aaron, Tom and I had dinner with Jim and his mother, and it went very well, so we would like to move forward.

Jim was very friendly. He is the kind of person that hugs everyone and is best friends with everyone in a couple minutes. He has a devoted mom. Aaron kept looking at Jim. I wish he could speak and tell us his thoughts, but he seemed happy. Jim likes to swim and go to King’s Island—both things that Aaron liked to do in the past. Hopefully, they will be able to do many activities in the community.

By Providence, or some divine plan, or dumb luck…Tom and Jim’s mother actually taught at the same school together and used to talk about their kids at lunch. Pretty amazing, eh?

So, if everything works out—drumroll please– Aaron and Jim will be roommates.

HUD

Jim’s mother is going to call Wendy at the HUD office tomorrow and see what we need to do to get Jim on Aaron’s list. So we will have 3 bedrooms and Aaron, Jim and the caregiver will make three. So, hurrah hurrah.

Also, yesterday the non-profit started painting rooms and beginning the process to get the house HUD approved. So we are really moving forward. It is hard to believe—this is going to happen.

Medicaid Waiver

Aaron and Jim both already have Medicaid Waivers at appropriate levels. So we can begin the transfer of Aaron’s waiver to our new county and start interviewing residential providers.

Finding a good staff will make our miracle triangle complete: (House/HUD—roommate—staff).

Furnishings

My sister Janet, visiting from Kansas, had a friend donate our first items for the house. The director of the non-profit allowed us to begin to put them in the garage.
The painters were there to let us in….
Today went so well, I think I’ll go buy some lottery tickets.

Thanks to everyone who is helping us climb our mountain and move forward. It takes a village….

Mary

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Hope you’ll share your thoughts and experiences. I’m happy and exhausted and I know we are only about half-way on the move-in journey. Whew! Now on to making a task analysis for tomorrow. Whew! Whew!

Tom, Tommy, Aaron and Mary

Today I will be interviewed on The Inclusive Class on Special Needs Talk Radio on the topic: Successful Inclusion.

This is the third interview in their series on Inclusion. The interview is about 20 minutes long. I hope you will leave comments here, talk to your friends and use your social media to spread the word on Twitter, Facebook, Google Plus, DIGG….

My Brief Biography:

Like many people, I began my journey into Disability World when Aaron, my oldest son, received his first label of autism and intellectual disability because he didn’t reach the developmental milestones.

Fortunately, Aaron was born right as PL 94-142 (The Education of All Handicapped Children Act—the precursor of IDEA) was passed. He and Neill Roncker were the first students with severe disabilities to go to Cincinnati Public Schools. Neill’s case (Roncker v. Walter) went all the way to the Federal Supreme Court, ours was resolved locally because the school district didn’t want a class action lawsuit.

I was fortunate to learn about inclusion from the people at TASH (Equity, Opportunity and Inclusion for People with Disabilities–formerly The Association for Persons with Severe Handicaps).

Most of my life was spent as a mom and advocate. When Aaron moved into his own house, I went back to school to get my masters and doctorate degrees in special education at the age of 50. I taught at Miami University and am still fighting the good fight for adult inclusive services for my son who is now 36 years old.

We’ve had some success stories that warm our hearts, and we work every day to make Aaron’s life more inclusive. We are currently working to move Aaron closer to our home.

Questions:

1. Roncker v. Walters was the first court case under the Education of All Handicapped Children Act to go to the Federal Supreme Court about the Least Restrictive Environment. What effect did it have on what we now call inclusion?

Neill Roncker and my son Aaron both lived in Cincinnati Public School District. Neill was a year older than Aaron.

In the 70s, Ohio had a policy that children with IQs below 50 were automatically excluded from the public schools and sent to the segregated schools for children with severe intellectual disabilities. It took several years, but finally the Federal Supreme Court ruled Neill could go to public schools and services must be PORTABLE.

“In a case where the segregated facility is considered superior, the court should determine whether the services which make that placement superior could be feasibly provided in a non-segregated setting. If they can, the placement in the segregated school would be inappropriate under the Act” (Roncker v. Walters 700F.2d 1058 6th Circuit).

For instance: if the segregated school provided speech therapy, that same speech therapy could be portable and provided in a public school.

Since Roncker there have been many cases on “mainstreaming,” “least restrictive environment” and “inclusion.”

The court sometimes makes conflicting decisions, but the bottom line is the decision must be made on an individual basis (thus the reason for the conflicting decisions) and must ask the question: “Can the services in the segregated school/class be provided in a general education school/class?”

Remember in the 70s-80s, we were just trying to get our children to be considered: “persons”; “capable of learning”; “potential employees” and to be allowed to go in the door of the public schools.

The term “inclusion” had not been invented yet.

The Roncker case was important for many reasons: it showed the congressional intent of education in the least restrictive environment; the rights of parents to go due process; and the courts responsibility to hear the evidence in education cases as well as consider class action lawsuits. The question of costs was also to be a consideration. These were critical milestones which affected future cases like Daniel R. R., Timothy W. and many other cases.

To avoid a “class action” case, Cincinnati Public Schools settled on Aaron’s case after we won our first due process hearing. Aaron was allowed to go to a public school. Long story, but my husband was a teacher in Cincinnati Public and because of harassment for Aaron and our family, we moved to another school district a year after we won the right to go to public school.

2. Can you share a couple of those Aaron success stories?

Our family researched the 5 counties in our area which included 3 states. We found one school district where both our children could go to the same school. After our three year battle with our school district and hundreds of confrontations with angry parents and teachers, our first success story was on Aaron and Tommy’s first day in our new district.

The yellow school bus pulled up in front of our new house and both our boys got on the same bus to go to the same school. No bands playing, no angry protestors, just four neighborhood kids waiting on the corner.

One young man who was about 9 years old, who had known Aaron for all of ten minutes, reached out his hand to help Aaron get up the steps of the bus. No one asked him–no one gave him an inservice or lecture on attitudes toward people with disabilities–he just instinctively gave Aaron his hand to boost him up.

That was when I knew Aaron was going to be fine. A helping hand–isn’t that all we were ever asking for?

If you want to see a picture of this moment, click on the historical slide show from the Minnesota DD Planning Council’s Parallels in Time 2. Aaron getting on bus his first day in an inclusive school.

Aaron and Tommy attended school together for almost their entire educational experience. Tommy is one of the most sensitive caring people I know and is now a radio frequency engineer with Sprint. They shared many activities together.

Aaron participated in inclusive social, emotional, some academic and after-school activities: Boy Scouts, the prom, the junior high dance, track/cross country, chorus, the environmental club, Friendship club, bowling, work study/vocational job club, and many other school activities. On my blog, I wrote about the graduation ceremony (link below).

If you want more information about A Place to Learn, check out the Parallels in Time 2. It is wonderful.

3. When you were teaching the “inclusion” courses at the university, what did the education students think about inclusion?

It was interesting. Most of the university students who went to school with people with severe intellectual and developmental disabilities couldn’t understand what the big deal was. The students who came from private schools where there was no diversity, were confused and uncertain how inclusion could work. I’m hoping my class made a difference, I’m hoping the next generation of students will have the learning opportunity to be voters, friends, neighbors, co-workers and bus riders with others who are different from them. As our world becomes more diverse, this will be a critical life lesson.

4. Some school districts call a school an “inclusion” school and all the students in the school have IEPs. Does that meet the definition of inclusion?

NO! Some school districts just make up their own definitions. Other districts “dump” kids in classes with no support services. Last year I went to supervise student teachers in an “inclusion” school and was shocked that everyone in the school was on an IEP. Check out Michael Giangreco’s article and terrific comics: “Moving Toward Inclusion.”

5. Why do you think inclusion is a civil rights issue?

The reason we have the term inclusion is because we have had exclusion, segregation and inequality. Senator Lowell Weicker said, “As a society we have treated people with disabiliteis as inferiors and made them unwelcome…”

If you have any doubt, check out Parallels in Time I ” a website on the history of people with disabilities.

In Brown v. Board of Education (1954) “separate is inherently unequal” says it all.

Check out “What is Inclusion?” on my blog ClimbingEveryMountain.com and see Aaron and Tommy in their graduation pictures.

Again, here is the link for the interview: The Inclusive Class: Successful Inclusion with Mary E. Ulrich

Mary

Comments:

Share some of your inclusion stories and let
us know what you are thinking. Will you listen to other interviews on The Inclusive Class? I’ll pass on your ideas to Nicole and Terri.

Here are their websites:

Nicole’s site:

http://inclusiveclass.blogspot.com/
Terri:

http://specialchildren.about.com/

photo credit: bixentro

Part 5 | When did Aaron become a Cash Cow?

Disclaimer: I am NOT an expert on HUD. I am sharing my personal experience. Please check with your local HUD.gov office.

In the last four posts, I’ve been documenting our journey toward moving Aaron, our son with the label of autism and developmental disabilities, to a new county with his HUD “housing choice voucher program” and Medicaid Waiver:

HUD Tips for Parents and Guardians of People with Disabilities| Part 1.

HUD Tips for People with Disabilities| Part 2

HUD Tips for People with Disabilities| Part 3

Part 4| HUD Tips for Parents of People with Disabilities

“Back on the Ferris Wheel” Analogy…

In Part 4, Aaron and I were stuck on top of the ferris wheel, rocking back and forth as a lightening storm is approaching—tired, scared and trying to keep from hurling our lunches–while far below, the “professional” ride engineer fumbles with buttons, trying to remember if he was supposed to push the forward or backward button….

OR

Ahem. I wish this were fiction, no one will believe the truth and ensuing drama.

When we left off, Aaron and I were waiting for an appointment with the HUD officer in the “receiving county” to accept/deny our “30 Day Notice of Port”:

1. I don’t know these people. And, I really am trying to follow the rules.

2. The 30 days deadline is approaching quickly.

3. The officer from the “receiving county” doesn’t make appointments over the phone. Their policy is to send an official letter with a date and time–and you need to be there. (This is one of the shocks when you aren’t considered to be middle class any more.)

4. By Day 10 of not hearing from them, I am getting nervous the 30 days will run out before we even get an appointment. Everyone seems to be taking vacation time, and then there is the carpet….

5. No one is returning my phone calls. Again, I’m thinking it is vacation and the damn carpet….

Evil Carnival Clowns

A supervisor for the Residential Company we are leaving keeps harassing me that we are not including him in our meetings. “What meetings?” I keep asking him.
Here is where it gets interesting:

Remember back to Thanksgiving Weekend, when the mailman declared Aaron’s house as “vacant” and refused to deliver the mail. See post: Caregivers| This isn’t my job

All mail is sent to main office
Well, since there was a systemic problem with staff not picking up the mail and forwarding bills…the administration of the residential company made a policy to have all mail sent to their main office.

So, the bills do get paid with this new policy.

But all other mail may, or may not, get back to the house ie. Aaron’s birthday card from his grandmother came to the house 2 weeks late.

So, the same residential staff, who couldn’t bother to reach 6 inches outside the door and open the mailbox, is supposed to drive to the main office (10 miles each way—non reimbursed) and pick up the mail.

So the letter from HUD sat in the main office for two weeks. (Voila—date, time, 30 days timeline….)

And, since the mail is going to the main office, any letter which looks important is then screened by the administration. (VOILA—oh my, they are having a meeting and we aren’t invited. Oh my, it looks like we are going to lose Aaron’s waiver money, and maybe he will take the whole house to another company….

Oh my, we will lose the cash cow….

So, the 30 day deadline is ticking away. I am calling the HUD office hysterical I can’t even get an appointment, and the letter with the date and time is sitting in a mailbox in the main office of the residential company I think is totally incompetent and the reason we are leaving the county to begin with.

Plus, since the residential company is trying to sabotage this because they are losing Aaron’s cash cow, they certainly don’t care if the parents miss the deadline, because as all service providers know, “parents are irresponsible.”

So, by the time I get the letter, the appointment is the next day, the same day as the speech evaluation we have waited for, for six months.

Actual Visit with HUD representative

Good news

Once I actually talked to the “receiving county” representative, she was wonderful and we became human beings again.

We scheduled the appointment for the following day. I was on time, she was on time and for the next 2 hours, she reviewed all the forms, policies, restrictions against parents owning the HUD property, and I walked out of her office with Aaron’s packet of forms to be presented to the landlord. She even gave us a list of potential landlords.

We left the meeting with a hug and best wishes. I felt this was a woman I could work with and was excited that we had jumped through this hoop successfully.

Back to Disability World

Now, if Aaron was just poor and had his Section 8 rent voucher for our new county, we would just go shopping for the best apartment/house that would accept the voucher. Because of the low rent, it would be difficult, but doable.

But Aaron isn’t just poor. He also has a severe disability. So, now we begin the journey of looking for not only a landlord (not parents) who will accept the Section 8 voucher, now we must find a roommate who also is looking for a place to live and who has a Medicaid Waiver to compliment Aaron’s waiver.

Medicaid Waiver

I cannot emphasize enough how lucky we are to have the HUD portable voucher. I also have to shout to the heavens a huge thank you that we have a Medicaid Waiver voucher. Without either one of these programs, we would not even have a chance of having a life for Aaron–or traveling this journey toward Aaron living close to us, with a good roommate and the 24/7 care he needs.

From: Mary E. Ulrich [mailto:marye.ulrich1@gmail.com]
Sent: Thursday, July 21, 2011 8:39 PM
To: Administrator of New County
Subject: Aaron Ulrich

Dear Mr. ____,

HUD

Today I asked for the 30 day extension on the HUD rent subsidy, so we have until August 31.

I met with HUD staff in both W and B County.

Our 2 hour meeting in W County involved filling out all the paperwork, and we are now ready to go in W County.

I learned that if Aaron uses the rent subsidy he must stay in that place for a year before he can move. If Aaron is not placed by 120 days he will lose the voucher completely and go back to the bottom of the 3-5 year waiting list.

If I understood it correctly, Aaron could move into our home during the 120 day period. He would not be using his HUD voucher during this time; W County HUD would be holding it for him. We could use this time to establish his W county residence so we could get a support coordinator, etc. I’m not sure how this would affect his Medicaid waiver, but at least he would be out of the clutches of the current residential company and we could get a support coordinator.

According to HUD, In-home support staff can be family members, or not. They would get an extra bedroom in the home if they live there full time. (Not shift workers).

We were given a list of apartments and rental homes in W County that take Section 8 clients. Another housing option is just to check out houses for rent and then ask the landlord to take section 8.

There is an exemption for parents to own the house, but in the 13 years Wendy (the HUD representative) has worked in W County only one was ever approved. So it is a hard sell. (But we could try if we need to.) That person was deaf and blind and the argument was that it would be too hard for him to learn the physical layout of any house other than the one he had grown up in.

Other CompaniesTransportation Money

Aaron is over his transportation budget to go from his current home in to Goodwill/Easter Seals Day Program. At his current rate, he will be out of transportation money by Sept.

The long bus ride (around 90 minutes each way) is still causing him to have increased behaviors (chewing his shirts, biting hands, toileting accident…)

Residential Company

Aaron’s current company is very difficult to work with and putting pressure on us. The supervisor said to move the Medicaid Waiver Support services from one county to the next is also a complex process. (And I’m not sure how cooperative they will be, so we might need extra time.)

Roommates

We would appreciate any phone numbers of potential roommates as soon as possible.

Thanks for all your help. I’m sure there is another person looking for someone like Aaron.

Mary

I am posting the administrator’s response. I like this person. I think he is competent, showed a lot of empathy and truly wants to help. I just want others to see what the process looks like from a parent’s point of view. I also think the 120 day maximum extension period should have some flexibility for special situations.

From: _____________name of administrator
To: Mary E. Ulrich
Sent: Wed, Jul 27, 2011 9:07 pm (notice the poor guy wrote this at night after office hours, before he left for vacation—that gives him bonus points IMHO).
Subject: RE: Aaron Ulrich
Mary,

I am still actively seeking possible housemates that may be a good fit for Aaron. I have requested ___(service coordinator) assist with connecting Aaron and a gentleman living in (county seat). She will be speaking with this person’s SSA to determine if he believes they may be a good match. I am hesitant to involve the other family at this time unless the match may work. I am hopeful it will and then we will assist with connecting you and his mother.

Unfortunately, I am not able to approve Aaron living alone in his own home with 24/7 staffing. The quickest option for Aaron moving to W County is to reside with you. He can receive homemaker/personal care services in your home with a provider of your choosing. If you choose to move Aaron into your home, I will continue my efforts in finding a suitable residential home for Aaron.

I must add that I cannot guarantee a suitable home will be available for Aaron within 120 days of moving.

I understand that this matter is very frustrating to Tom and yourself but I believe finding a good housemate for Aaron is the first priority. While the HUD matter is a concern, I may not be able to solve this dilemma within HUD timelines.

To complicate matters more, I will be on vacation beginning 7/28 and will return 8/8. I have requested ___(a service coordinator) give you a call once she communicates with the potential housemate’s SSA. I am still hoping we can resolve this quickly. Thanks.

__________ name
Service and Support Administration Director
W County
O:
F:
Emergency #: 1-800-

Confidentiality Notice: This e-mail message, including any attachments, is for the sole use of the intended recipient(s) and may contain confidential and privileged information. Any unauthorized review, use disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy all copies of the original message.

COMMENTS

WILL THE FERRIS WHEEL LAND SAFELY?
WILL MARY AND AARON SMOOTHLY MOVE ON TO THE NEXT RIDE?
WILL ANOTHER FAMILY TAKE THEIR SEATS ON THE FERRIS WHEEL?
WILL THE “RIDE ENGINEER” LEARN THE DIFFERENCE BETWEEN THE FORWARD AND BACKWARD BUTTONS?
WHAT WOULD YOU DO?

Keep Climbing: Onward and Upward.

Mary

OTHER RELATED POSTS:

Signing Your Life Away (Literally)

Dream Plan for Aaron (Part 4)

Please recommend ClimbingEveryMountain.com to any other family or professional caregivers. It’s a great way to show how much you care.
If you are receiving this issue of climbingeverymountain.com as a forward, and would like to get your own subscription, sign up for “notice of new posts” on the home page (top left).

photo credit: kevindooley

HUD Tips for Parents and Guardians of People with Disabilities| Part 4: Are we having fun yet?

Disclaimer: I am NOT an expert on HUD. I am sharing my personal experience. Please check with your local HUD.gov office.

In the last three posts, I’ve been documenting our journey toward moving Aaron, our son with the label of autism and developmental disabilities, to a new county with his HUD “housing choice voucher program” and Medicaid Waiver.

HUD Tips for Parents and Guardians of People with Disabilities| Part 1.

HUD Tips for People with Disabilities| Part 2

HUD Tips for People with Disabilities| Part 3

Disability Ferris Wheel

Round and Round and Round we go. Where we’ll stop nobody knows….

WHY AM I SHARING THIS?

Social Workers and other professional solve problems all the time.

BUT PARENTS DO TOO!

We just don’t have the experience, contacts, resources and the emotional distance. So, even if we do have the intelligence and problem solving skills, it takes us longer to figure out the system and put it all together. If we are really considered part of the “team” our communication, resourcefulness and advice/concerns are respected and valued.

Our child’s need is often the first time we are trying to solve this particular issue. I often tell professionals, I had to become and expert on early childhood when my son was a baby and young child. Then there was school-age, and now that we are in the world of adults, I need to become an expert on all the adult life spaces where Aaron lives, works, recreates, and interacts. And this is why I’m learning about HUD, residential agencies, non-profit housing boards, county boards, Medicaid, Medicare funding for communication devices, apps on IPADS…. the list is endless.

I hope that makes sense, because the letter (below) shows some of the frustration, some of the complexity, and some of the layers of needs for just our one son. And, all of this happened in just one week.

And since our lives–and our child’s life–hangs in the balance, we don’t have months to resolve the issues.

They always say the best way to teach or to write is to “show, don’t tell.”

I want to “show” what a parent’s life might look like.

A social worker might be taking care of just the residential piece of a person’s life. A teacher, just the school piece. Those are complex, I’m not knocking their jobs.

A nurse or doctor works on the medical piece. A communication or speech therapist, or a dentist, or a transportation person, or even a residential staff or supervisor only handles one tiny piece of the daily life puzzle.

BUT PARENTS OR SELF-ADVOCATES HAVE TO DO IT ALL.

Often, I feel like we are all on a giant ferris wheel hoping to someday get off. But the wheel just keeps on turning…and all of our life is going past in a blur of meetings and appointments and we are getting nowhere. What do you think? Do you feel like you are stuck in the little car on the top of the ferris wheel and the guy below is purposely letting you swing back and forth with your legs dangling in the air. (Ugh, feeling the queezy feeling.)

Here’s my letter, from last week, to our day care staff person and our social worker. Note: I love these two people, so they are worth communicating with.

Letter to Aaron’s Adult Day Program Coordinator and his Support Coordinator.

Hi P___ and L___,

Tom (Aaron’s dad) spoke to the direct care staff person last night:

1. She hadn’t bothered to open Aaron’s backpack or daily communication notebook from the day program.

2. Tom told her to find the electric razor in the bag and see if she could figure out how to use it. Last week, Aaron had cuts on his face from the straight razor, so at the “meeting” everyone decided Aaron was to use an electric razor. (This is the same woman who used shaving cream and ruined the last electric razor, so we wanted to be specific.)

3. He also told her Aaron hadn’t had a BM since 1pm on Sat. (that’s over 55 hours) and asked her to consult the toileting chart in the communication notebook.

4. He told her to give him yogurt, some of the fiber stool softener, and try to put him on the toilet.

5. The direct care staff person listened, but we have no faith she will do anything.

ADDITIONAL INFORMATION

RAZOR

We traded electric razors when we picked him up this weekend to see why the staff was having such a hard time using it. When Tom checked the electric razor he found out no one had emptied the hair inside the razor in ages and it was full, full, full. Apparently, these were women and they didn’t use razors, so didn’t know they had to be cleaned. Who knows how long … gross, gross…we won’t go there.

Once Tom cleaned it out, the razor worked great. Previously, Tom has showed staff how to clean it out, but apparently they were too lazy, didn’t care, forgot, or were incompetent.

Residential Agency

Because of our continued frustration with the direct care staff, and other agency changes (like they went bankrupt) We hope to get Aaron out of his current agency’s care ASAP. I’m still aggravated his residential supervisor insisted on that meeting last week, and lied about Aaron losing his Medicaid Waiver, because he knew that would motivate us to come. But, basically he wasted our time and was on a power trip to show parents their place….

HUD

I found out each county has different timelines, paperwork and rules. I met with the “receiving county” counselor from HUD and she was wonderful. The meeting took about 2 hours, and I’ll talk about that in another post.

I dropped off Aaron’s current “nondriver” state ID at the HUD Warren Co. office. I also met with the Butler Co. HUD person and signed her paperwork for the extension. (probably drove close to 60 miles). Called current landlord and she FAXed the extension letter.

To: Sending County HUD and Receiving County HUD

Re: Aaron Ulrich, HUD extension

From: (guardian)

July 17, 2011

On behalf of my son, address, we are still in the process of moving to ___ county. We are requesting a 30 day notice to continue at current address in current county.

Thank you.

Mary E. Ulrich (guardian)

Apparently, we will need to repeat this process again next month, if things still aren’t completely in order.

HOUSE in Receiving County

Potential Good News:

The landlord (non-profit company we have had for over 13 years) is going to get back to me next week (person on vacation, of course) about buying a house in our new County.

We think they do a good job.

Aaron could use his HUD voucher and rent from them.

If they buy a house, Aaron would have to start paying rent by his 120 day limit or lose his voucher.

So (vacations or not, new babies, new staff, new carpet or appointments not withstanding) Aaron has to be in his new County by the 120 day limit.

I called and left a message with the director of the new county.

This would solve the problem of “parents owning the house.” You know those evil parents who always try to take advantage of their children:)

IF IF IF this works, we would then have to begin the process of moving Aaron’s Medicaid Waiver to a new company, and

Then we would need to get a roommate, and make sure, not only are the two guys compatible, but also their funding is compatible.

This is a positive bit of news. YEA, *crossing fingers*

DOCTOR APPT

Aaron’s Medical Doctor said to continue the same meds for another month. He said it didn’t look like the Zoloft was helping much, but it was such a small dose he thought we would just see how he did. Aaron was as calm as ever in the Dr’s office. It’s amazing, we try to explain his anxiety attacks and he’s sitting there with his leg crossed, playing with his baseball cards happy as can be. Aaron’s blood pressure was better than anyone’s in the room. Next appt. August 29. Aaron really likes the Doctor.

Communication: S/LP

The speech therapist from last week’s appt. said she wasn’t going to recommend Aaron get an IPAD because she knew his medical card would not pay for it. She would, however, recommend the PECs program. My friend, Patty from the Arc gave me a copy of formal regulations which said Medicaid might pay for the device after Medicare turned it down.

After I passed on that information, a couple emails and calls, we told her we would buy the IPAD device, but we needed a speech therapist to tell us what apps… worked with Aaron.

She recommended a therapist who worked with adults. (Ironic that this is the same place Aaron went for speech therapy for over 15 years.)

I told her Easter Seals also had an IT guy who might be able to recommend some tech applications.

I’m thinking we’ll buy the device, and then if Aaron lives close to us, we can figure out how to get him to therapy (it will be a reasonable distance.) Aaron’s Doctor gave us a prescription for the speech therapy.

Thanks for all your help. Can’t wait to see what this week brings.

Ps. Penny, Would you send me a note to let me know if Aaron had a BM? I forgot to give you Aaron’s yogurt for the week, will you be shopping and able to pick some up? I think you have plenty of raisons and other fiber snacks.

Maybe we should start doing midnight dances or sacrifices to Mother Nature.

Comments

Please share your thoughts. Do you have any tips for housing for people with disabilities? Life is either a daring adventure, or nothing at all. (Helen Keller) Is it possible to look at this HUD journey, as a trip on the ferris wheel? The highs and lows are just part of the adventure? Have you ever felt stuck at the top?

Keep Climbing: Onward and Upward,

Mary

Related Post:

The Right to Communicate and What Parents are Communicating: We are the experts.

Please recommend ClimbingEveryMountain.com to any other family or professional caregivers. It’s a great way to show how much you care.

If you are receiving this issue of climbingeverymountain.com as a forward, and would like to get your own subscription, sign up for “notice of new posts” on the home page (top left).

photo credit: smcgee

Happy First Birthday| Blog for Parents and Caregivers of People with Disabilities

Can you believe it? On July 21, 2011 ClimbingEveryMountain.Com celebrated its first birthday.

Fellow Climbers

Parents, Caregivers, Advocates, Friends

Parents, Caregivers, Friends and Advocates of people with disabilities need each other. Our journey up the mountain is exhausting and treacherous.

We climb, not because we want to, not because we think it is a fun challenge, not because “it is there”—we climb our mountains out of need—OUR CHILD’S NEED, OUR NEED.

For the past year, this blog has been a basecamp where interesting people from around the world add their ideas, personal stories, ups and downs, advice and expertise. To everyone in our Climbing Every Mountain Community, your love and friendship means so much.

There have been 120 blog posts of original content and 1,261 comments. Here are the first posts which explain what this blog is all about. I’ve updated a couple things, but the mission holds true. I hope you agree.

Shouting my Commitment | Is anybody there?

Climbing Every Mountain is a Team Effort| What this blog is about

I am thankful for each of your comments, emails, phone calls and the many other ways you have reached out to our team. Together we are better. Together, we can each work for inclusion in our own way, and the ripple effect will be that our individual efforts will change the world, not only for people with disabilities, but for all of us.

Google Analytic Statistics for July 21, 2010 to July 21, 2011:

There have been 12,184 visits to http://ClimbingEveryMountain.com from 114 countries/territories. The top ten include: US, Canada, United Kingdom, Australia, Philippines, India, Ireland, Brazil, South Africa, New Zealand….

3,664 returning visitors. 19,216 Page Views. 1.58 pages a visit.

I’m sure some of these visitors were looking for The Sound of Music or some mountain peak vacation adventure, but I know many were looking for our basecamp for parents, caregivers and advocates. I know Google expects visitors to spend more time on the site and look at several articles each visit, but thank you for a terrific start.

photo credit: hfb

Tech Support

Climbing Every Mountain has a terrific group of people who help with the tech support. I’m a novice blogger and they have held my hand and guided me up the social media mountain. Real mountain climbers need good equipment and guides, thanks for giving me a safety net and strong lifeline:

Tim Gary

Mindcue: Brilliant Ideas Deserve Brilliant Websites (security, tech support, hardware and software issues, fighting off hackers, bad guys, and encouraging a very insecure webmaster.)

Johnny B. Truant

Johnny creates inexpensive websites and helped me with the start-up, plus he coauthored, Question the Rules, a course for non-traditional thinkers.

Cheerleader Team

Alison Golden

The Secret LIfe of a Warrior Women Alison is my blogging partner and has been a terrific source of information and encouragement. We met at Question the Rules. She is a strong advocate for her children. Her gentle spirit and humor are her secret weapons in being a warrior woman.

A special shout-out to my friends at OVRWA. You help me believe in “happy ever afters” and pick me up when I post an article and get more spam than comments.

Learning to venture into the real community outside Disability World is one of the cornerstones of inclusion. If we want this for our children, we need to learn to build community for ourselves. Alison and OVRWA are helping me learn to be “normal.”

Mentor Team

Sylvie and Michel Fortin

Success Chef Academy Every Wednesday night, Sylvie and Michel serve up an “over the shoulder” look at how to create your own success story. In their informal style, they have taught me about the back and front end of an online business. I’ve come to depend on their advice and personal encouragement. Many of my future goals for Climbing Every Mountain are based on what I am learning in the Success Chef Test Kitchen.

James Chartrand

Men with Pens has also been generous in her encouragement. She is working for social justice in her own way, and reminds me each website must have simple design and good writing. It was her gentle push that finally gave me the courage to take the leap into blogging.

Chris Brogan

Chris Brogan has more ideas than anyone I know. He also takes those ideas and makes companies, and they make money. (That’s certainly different than anyone I know in non-profit and disability world.) He has a geek brain, but… he can translate it into everyday, everyman language. Chris made one tweet about Climbing Every Mountain and I got more traffic that one day, than in a month. He is the guru of social media and helps non-profits. Plus, he talks about his kids and parents. Pretty neat.

There are many others, thanks to each of you.

photo credit: Ѕolo

Aaron wouldn’t let us end a birthday celebration without a song. Blake Roberts suggested The Climb as a theme song for our Climbing Every Mountain blog. I would like to ask you to listen to the inspiring words and feel proud of everything YOU have accomplished this year. Enjoy the digital magic created by Blake Roberts and Snoopi Botten using DecTalk, an augmented communication software program.

Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).

Keep Climbing: Onward and Upward.

Mary

Comments:

What was your favorite post this year? Any suggestions or comments for next year?

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For more about Blake Roberts and Snoopi Botten, check out Do you hear what I hear, Do you see what I see? for their amazing story.