Special Exposure Wednesday

Most of the time I can figure out why my kids do some of the strange things they do. But this one I just can't.

Yesterday morning, I went to wake Ashley. It was still pretty dark - I was still half asleep - and at first glance all I saw was the green of her sheet. I looked around her room and couldn't find her. I started to panic but glanced again at the bed. I saw a lump under that green sheet!

Ashley had pulled all the covers off her bed, and then crawled up under the fitted sheet.



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Dear Doctor

After four trips to three different doctor’s offices this past week, I have decided that most doctors’ offices are seriously in need of a redesign. And, they need to consult with us parents of children with special needs when doing the redesign.

For example, just separating one large room into two by using a row of chairs does not a sick and not-sick waiting area make. If you truly want to separate the children who are sick from the non-sick, two separate rooms, each with their own door, are needed.

If you wish to supply toys for the children while they wait, you need to follow daycare toy rules – wash them every evening in a bleach water solution – don’t include any soft toys like stuffed animals – and definitely consider that there may be children with vision and hearing impairments, autism, and other sensory issues. Also keep in mind that there may be children from infants to teens. My teen daughter really has no interest in your shape sorter toy.

It’s very nice if the office has automatic entry door (although most don’t), but what about all the other doors? Those of us with children in wheelchairs or walkers still have to perform acrobatics to get your exam room doors open or your bathroom doors open. And yes, most of you now have accessible bathrooms, but please consider that some childhood wheelchairs are huge, and that sometimes two adults are required to accompany a child to the restroom. Please make sure there is enough room for all the people and all the equipment.

If you supply books and magazine, please understand that many of our children with special needs love to tear paper. If you have a particular book or magazine that you cherish, don’t put it in the waiting room or the exam room. And about those exam rooms – I have yet to find one big enough to accommodate my child, her chair, her equipment, me, and another adult. As soon as I walk into the exam room, I turn into a furniture mover.

Also, I understand that many of the exams doctors perform require that a child lie on an exam table. But I can no longer lift my 14 year old daughter onto the table. If you really need her up there, we’ve got to come up with another idea, or at least 4 strong people.

I love my daughter’s doctors. They are some of the nicest, most caring people I have ever met, and I know they have my daughter’s best interest and optimum health at heart. But let’s not forget the practical side to caring for children with special needs…

For Azaera

Azaera asked me for two things last week, and I am honored to oblige :)

First, I had mentioned in my Thankful Thursday post that I loved dinners that could be prepared in under 30 minutes. Azaera asked me to share some recipes. Well, here's the first - super simple and quick meatloaf muffins:

You will need 1 box of Stove Top Stuffing Mix - any flavor will do, 2 eggs, 1 cup of water, and 2 pounds of ground beef or turkey. Just mix all the ingredients together and fill 12 muffin tins with the mixture. Make sure to coat the muffin tins with cooking spray first, especially if you are using turkey. Bake at 350 degrees for approximately 30 minutes.

With the muffins, I serve boiled new potatoes - no need to peel them - just chop, boil, drain and season however you like. Our favorite is salt, pepper and some chopped fresh chives from our herb garden. For something green, I steam brocolli in the microwave - that way it keeps more of its good vitamins. And then if your family is like mine and always wants bread of some sort with dinner, I serve leftover biscuits or store bought rolls.

Azaera, I'll post more in the near future!

Azaera's second request was for some more pictures of Ashley. Ok, well just twist my arm!! Here are some that were taken over the summer:

Circle of Friends

Ashley came home from school yesterday with some artwork that she and a student in regular ed created together. With it was a note explaining that the regular ed student was one of the 'Circle of Friends' club at the high school.

I had heard about Circle of Friends from my son who recently graduated from this high school, and I had heard from other parents. Although comments have been mixed, the majority have been positive, and the existence of this club was one of the reasons I chose to send Ashley to this high school.

Regular ed students join Circle of Friends as an extracurricular activity, similar to joining the Spanish Club, for example. When the students have study hall, or sometimes before and after school, they will volunteer in the special ed classrooms. I'm really hoping these students will help bring Ashley the social experiences that most high schoolers find.

As I wrote earlier this month, I've pretty much given up on expecting my school district to provide an actual education for Ashley, but I haven't given up on the social aspect that school can provide. So far, it seems we are on the right road for that, and I will be keeping my fingers crossed that it can continue.

Does your child's school have a similar program?

Thankful Thursday

Today I am thankful…

• for flu shots. I know they don’t always keep me from getting the flu, but each year I’m hoping that will be true.


• that Dancing With The Stars and **MAKS** are back on tv


• for good books that keep me up too late at night


• for dinners that can be made in less than 30 minutes and still taste good


• that the lovely Miss Brooke is feeling better


• that Ashley has been sleeping pretty well for the last few nights


• for Dr. Wright, Ashley’s pediatrician. She is so thorough, so nice, and so very caring of children with special needs


• for Jessica’s person centered planning team. It warms a mother’s heart to know that other people care so much for your children

"Gotta Love This State I Live In", she said sarcastically

I love living in the South. And I've always loved many of the things my home state has to offer. Then something like this comes along and sends my blood pressure off the charts...

Hopes For Group Home Dashed

A community service board in Northern Virginia dropped plans to set up a group home, pictured on the right, for adults with intellectual disabilities after neighbors complained vehemently to the local board of supervisors.

The Rappahannock-Rapidan Community Services Board (RRCSB) had proposed converting a foreclosed home in a rural neighborhood into a supervised group home for a handful of adults with developmental disabilities who had no criminal backgrounds.

Members of the neighborhood voiced concern that a group home would lead to decreased property values, compromised neighborhood safety, a violation of neighborhood covenants, lost insurance coverage, and safety problems for the residents with disabilities.

This newspaper editorial was excellent however.

I just cannot believe this cr*p happens. OK, yes I can, but I don't want to believe it.

The Birds and the Bees

My daughter, Jessica, is 18 years old and wants a boyfriend. Problem is – I’m not sure she understands what that means.

I’ve tried through the years (I adopted her at age 9) to explain the birds and the bees in a way that her significant cognitive impairment could understand. But, I never felt like I was getting through. Combine that cognitive impairment with the very real possibility that she was sexually abused while in the foster care system, and sex ed did not come easily.

But it’s time to figure out something. Jessica is an adult and wants to enjoy things that all adults enjoy, including the companionship of another adult. I believe she has a right to a sexual relationship if that is what she desires, but at the same time, I believe she needs to be taught what that means.

So several other members of her Person Centered Planning team and I went in search of resources. What we found is called Life Horizons. It is a two part, full curriculum which addresses sexuality.

The first part talks about the Physiological and Emotional Aspects of Being Male & Female. We previewed the CD yesterday, and it is graphic, but not graphic in a salacious way. And since it is presented as slides (no live action), slides which may not be appropriate can be skipped. The second part includes sections on Building Self-Esteem & Establishing Relationships; Moral, Legal & Social Aspects of Sexual Behavior -- Male; Moral, Legal & Social Aspects of Social Behavior -- Female; Dating Skills & Learning to Love; Marriage & Other Lifestyles; Parenting; and Preventing or Coping with Sexual Abuse.

It’s a lot of information, information which cannot be covered in one sitting. But, it appears to be very comprehensive and exactly what Jessica needs and wants. I will keep you posted as we start through the program, but I am curious as to what you think now.

Are you a parent who has had to struggle with this issue, and if so, what did you do? And, do you feel it is important, even critical, to educate a person with a significant cognitive disability on these matters? How have you responded to questions about dating, marriage and sexuality? What advice do you have for me as I undertake this journey with Jessica now, and Ashley later?