Boring...

My college student, Kiera, was giving me some "constructive criticism" last night and told me my blog is boring. Boring? Truth be told, I am about as exciting as a cow pie in a pasture...

I'm calling this brief period in my life peaceful. Perhaps my blog is boring but I am enjoying a quiet Lent as Reagan recovers from her transvenous pacemaker procedure. She is feeling good but we are staying close to home so that Reagan doesn't catch any of those community acquired viruses while she heals.

Speaking of Reagan, I can't tell you how proud I am of her attitude and behavior throughout her admission to the hospital. She was better behaved than most typically developing 16 year-old patients that I've taken care of over the years. She was engaging and cooperative pre-op and woke up like a model patient - charming the PACU (Recovery Room) nurses. She stayed briefly in the Pediatric Intermediate Unit, calling every nurse friend, and then home.

For the next month Reagan can't lift anything heavy or raise her left arm above her head to avoid dislodging her new pacemaker leads. I must say I was more than a little concerned because of her forgetfulness, but a little tool to remind her has worked well. On the way home from the hospital I bought her a sling just to remind her of her short-term physical limitations. She never fails to wear it and has not needed a reminder as to what she needs to do (or not do) as she recovers. She is managing her own post-op course better than most adults. I am one proud mama!

With the right tools, I believe she will be a fairly independent adult. I find that very exciting! The work to get there is filled with baby steps which can seem to be boring as we move through them but they are baby steps to independence and independence is our goal.

Really, my life couldn't be more exciting as I watch her grow towards independence!

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Don't Feel Sorry for Me...

I see it in your eyes and as you stare

When you see me at the grocery store or the library, don’t feel sorry for me

When you see me at church functions, don’t feel sorry for me

When you see me on the beach or at the pool, don’t feel sorry for me

When you see me taking my daily walk, don’t feel sorry for me

For you only see...

The young lady by my side has Down syndrome and you feel sorry for me

A pity that stems from your own prejudices

For you don't bother to acknowledge or know her

Your stare tells me you thinks she is an anomaly

Didn't your mother teach you that it's not polite to stare?

She is not an anomaly - she is a precious child of God


People with Down syndrome are not mistakes

For God does not make mistakes

She is an intentional part of His creation

Sent here to heal you


As her mother, I know…

A love as unconditional as our Father’s love

Kindness and caring as no other can offer

Immediate forgiveness for my transgressions

Hugs which are heart to heart


Truth be told, it is I who pity you…

For you do not know what a precious gift has been given to us

People with Down syndrome are a gift from God to a world lacking in kindness and compassion

A self-absorbed world that values high IQs, perfect teeth and McMansions


I know…


Pure delight in who she is and what she has accomplished

A beauty that is profound, which resides in her soul

An innocence that finds joy and delight in all things and everyone

An unpretentious nature that generously gives, which does not judge

Someone who loves life and appreciates every moment as an opportunity to love another

I know...

Joy far beyond what you will ever know

A little piece of heaven – God’s gift to all who truly know her

Never a burden, but a blessing

Our lives are better for her presence

Don’t feel sorry for me

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IDSC for Life - World Down Syndrome Day

March 21st is World Down Syndrome Day. Celebrate with me with this beautiful montage put together by the International Down Syndrome Coalition for Life:



All life is precious...

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Lent

Lent is here and I am not.

I mean to say I have planned well for Lent. I have my devotionals, my Bible reading schedule, I am fasting and I am giving more in areas that I have found lacking.

It is a good thing that God knows my heart and whispers in my ear those places which need work. Charity is the word he has given me this Lent.

Charity as a virtue is love.

" Charity - An unlimited loving-kindness towards all others, is held to be the ultimate perfection of the human spirit, because it is said to both glorify and reflect the nature of God. In its most extreme form such love can be self-sacrificial. Confusion can arise from the multiple meanings of the English word "love." The love that is caritas is distinguished by its origin, being Divinely infused into the soul, and by its residing in the will rather than emotions, regardless of what emotions it stirs up. This love is necessary for salvation, and with it no one can be lost."


"Charity is comprised two parts, love of God and love of man, which includes both love of one's neighbor and one's self."

BUT, I am a mother who is distracted by my daughter's upcoming procedure. Reagan is getting a new pacemaker on Friday. I am distracted by my own anxiety. In the scheme of things this is not a big deal. But it is a big deal for me and a very big deal for Reagan.

Reagan is used to procedures. They are a part of her life...and I really hate that part.

The part of her life which steals normalcy from us.

So, I am working very hard on charity as one of my Lenten devotions. I'm sure God means to stretch me well during this relatively minor procedure and inpatient stay in the hospital. I am going to choose charity as we move through this. I know I am going to be challenged greatly but with God I can do all things as long as I keep my eyes focused on Jesus and my heart fixed on heaven.

...and then Lent will truly begin for me.

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Repentance - Anglican Perspective

Do You Homeschool a Child with Down Syndrome?

Do you blog about homeschooling your child with Down syndrome? I would like to know who you are!

Here are a few that I know of:

Barbara at Barbara Frank Online

Lori at Special Connection Homeschool

Beth at Hannah's Shenanigans

Kimberlee at Pondered in My Heart

I know there are more of you. Let me know you are out there! I would love to put you all on my sidebar.

A Fascinating Mind

As Reagan, 16 y.o. with Down syndrome (Ds) gets more mature, I become more fascinated with the way she thinks and responds to life. She is quite verbal so I am given a wonderful picture of what she thinks and feels.

Feelings/Emotions

Reagan often tells me she has feelings. It’s funny, at times, because she displays her emotions clearly. I know she has feelings! She verbalizes them quite well. I have no doubt she experiences the whole range of emotions common to humanity. If you’re willing to listen, she will tell you her life history, marked by events that are important to her displaying the joy or sadness (or something in between) that accompanies the events.

Reagan often asks me to tell her the stories of her infancy and toddler years. Those years of which she has no memories - like most of us. She wants to hear them in chronological order starting with her growing inside my womb, her birth and then year by year by birthdays. I tell her the stories which she greatly enjoys, she to commits them to memory and then to retell the stories – great exercises in stretching auditory processing skills! She then tells the stories of which she has no recall with the feelings I project and articulate. The rest of her life story of which she has wonderful recall she adds so that her life story is orderly and makes sense to her just like she is reliving it - emotion and all.

Fascinating.


Thinking

Did you know that people with Ds often think and recall events in pictures? It makes sense because of their relative visual strengths and weaknesses in auditory processing. They have excellent visual memory skills and an amazing recall of people, places and past events. Their strong visual skills are useful in so many ways – learning, in social areas and enhancing independence.


So why do I find this fascinating?

It is who she is. As a mother, I find the way my children think and respond to life fascinating. Because of the intimacy we share, I enjoy the uniqueness of my children. It has been a journey of discovery and joy getting to know how their minds work and who they are.

Mourning. Reagan's mourning is different. She mourns the sister who died before she was born as if she knew her. She mourns the loss of the pets she remembers, a dog and a cat – beloved members of our family. These pets died 7 and 5 years ago respectively. She mourns them in the same way she mourned them when they died. It’s intense, tearful and she verbalizes the same pain and sadness today as she did yesterday, last month and the years since they died.

Changes. I am trying to help Reagan with the changes in her life today. She is adjusting to Kiera being off to college but it is still hard. She has “rain clouds” in her eyes daily. She tears up frequently and expresses great sadness that her sister isn’t here with us.

The Problem

I know Reagan is a concrete thinker. She shows me little in the way of abstract thought.

She knows what time it is and what she needs to be doing.

She doesn’t, however, have a sense of time. It is just something marked by the clock and the calendar.

Today, I opened up Mental Wellness in Adults with Down Syndrome, A Guide to Emotional and Behavioral Strengths and Challenges* by Dennis McGuire, Ph.D. and Brian Chicoine, MD to gain some insights and found some great information that helped me put the pieces together that might help Reagan and found:

Disadvantages of a Strong Visual Memory

Characteristics of memory recall in people with Down syndrome

"Difficulty in linking memories to time
Although people with Ds have exceptional memory for past events, they often have little understand of when these events occur in time – due to the abstract notion of time. Many people with Ds do not have a good sense of recalled events as part of the past or as part of an historical sequence of events

The tendency to relive past memories in the present
It seems that combining their visual form of thinking with the absence of a sense of time results in a unique phenomenon. People with Ds do not seem to remember a past event so much as to relive or experience as if it is happening now – often with the same feelings and emotions experienced at the time of the event.

The tendency to repeat specific memories
Many people with Ds replay certain specific memories over and over. These repeated memories are often memories that elicit strong positive or negative emotions. Given the intensity of their visual memory, they are able to transport themselves virtually backing to relive these experiences."

This is Reagan! Her difficulty adjusting to the changes in our lives and mourning her losses does not interfere with her ability to function. These mourning episodes are brief and then she is done. It is incredibly sad for me to watch but now I understand better why her fascinating mind works the way it does!

*Do not wait until your child is nearing adulthood to buy this book. It is full of insights into our children with Ds too

The Little Things

Last night I was thinking about a jewel of a book we used with Reagan when she was younger and beginning formal pencil and paper activities. As you may recall, children with Down syndrome (Ds) learn little incidentally. They do not learn as much through observation and indirect exposure as typically developing children.

Skills need to be directly taught to children with Ds. When our children get a new toy, we often have to teach them how to play with said toy. Step by step, we teach them how to enjoy it or learn from it.

When teaching concepts through the well-known method of match-select-name in teaching reading we have to teach our children what match means. When following directions on a work sheet, we specifically need to teach them directions like draw a line to ______ or circle the ______ or cross out the _____.

These are skills we must teach specifically to our children with Ds. They often won’t immediately adopt these skills. We must give them practice at skills that are often left unspoken and not specifically taught. We must be as intentional about the little things as we are the more important skills. For it is in building on the little skills, we find the big picture.

Developing these skills takes only a few minutes a day. You could certainly make your own worksheets to teach the skills. We had a very helpful guide:




Follow Me! Listen and Do Activities by Grace W. Frank, was very helpful in teaching skills needed to follow simple directions on paper. Ms. Frank defines and teaches basic direction terms (line on, line next to, line through etc.), position/location words (top, bottom, beside etc), association (matching, same/different, categories etc.), exclusion (not), sequence (before, after, first, last etc.), word meanings (equal, more, most, fewest etc.) and listening (beginning sounds, rhyming etc.)

Follow Me! Listen and Do Activities is for K-3rd grade. We used it for a very long time. The directions are very simple as are the worksheets. As we moved through the book the directions became more complex. It is spiral bound so that making copies of the worksheets for repeated practice is quite easy. Reagan thought the activities were interesting and fun. They worked and improved her auditory processing skills as she followed simple to more complex directions and gained many new skills often picked up quite easily by typically developing children.

I almost hate to mention this book because it is out of print but can be found for a fairly reasonable price on ebay - reasonable compared to $160.00 and up from Amazon booksellers. Sometimes I wonder how much my homeschooling library must be worth. I’ve been doing this so long that many of my books are out of print!

You certainly don’t need a guide to teach your children these skills and definitely not one which has that kind of price tag. We do need to think about and intentionally teach the little things to ensure our children can learn, step by step - building on what they know, the big things!

From Homeschool to College

This past fall our oldest homeschooled through high school daughter, Kiera, left for college. The process of picking schools, the application, getting a transcript together, visiting schools, the interview, and making a decision were the easiest part of transitioning to college. So many parents fear this process. I know I entered it with great trepidation.

The Fear Factor

Parents fear their transcripts won't meet the standards that government schools generate electronically. We found this process quite easy. We listed the classes our daughter took, her grades and generated a GPA for the semester and school year. A transcript accepted by every school to which she applied without question.

Parents fear their child won't be accepted to college or can't compete with those educated within the system - because they are homeschooled. Colleges covet the homeschooled applicant. Homeschooled students score higher on standardized testing (including the ACT), have higher GPAs and higher graduation rates. Read more here. Colleges and universities want students who succeed and make them look good!

They fear the interview process. We found that what is commonly feared as the school interviewing the high school graduate is actually the school wooing the prospective student.

FAFSA. Haven't we all heard horror stories about how hard it is to fill out the form to qualify for federal grants. It is apparently much easier to file the form these days. It only took hubby 30 minutes to complete and submit the form.

Parents fear the cost. College is expensive. Student loans take a long time to pay off and can be burdensome to the student and parents. Scholarships were an important factor in our choice of schools. We also learned that with a little support from scholarships offered by the schools that private schools were competitive with state funded schools.


Deciding on a college or university


Get started early! I had been collecting information about schools for years. We considered:

Our daughter's interests and academic path for her chosen field of study
The size of the school
Credentials of the professors
The professor - student ratio
Whether or not teaching assistants were used.
Graduation rate
Student supports
Extracurricular activities
Opportunities on and off campus for a well-rounded education
Cost
Religious affiliation
Distance


I polled many on their thoughts about different schools. I listened to many offer their opinions on the best schools for our daughter's career path. I also asked about religious affiliation - whether the school was only loosely affiliated or whether the school took seriously their role in forming Christian disciples.

I used the internet extensively. I checked mission statements. I looked at what each school had to offer as far as course of study. I looked at forums discussing schools. I plugged in key words that were important to us and did extensive research to narrow down our options. I ruled out many schools in this manner.

I even read many advertisements in the journals/magazines we subscribe to - journals with which we hold common beliefs. I did not rule out any resource.

We visited schools which we were interested in

To our surprise we were being recruited. We did not have to sell our child to anybody! They worked very hard to impress us with what they had to offer! We found out many things that the schools were not advertising just by listening and reading posters tacked to bulletin boards. Things and ideas that ruled out the school. Be very alert when doing college visits.

The Decision

The process which narrowed down our choices for schools was not really difficult. We took our time to discern which school would fit Kiera's needs and career path. We visited some great schools and had good experiences. After narrowing our field down from ten schools to two, and satisfying all of our criteria, it came down to distance. One school was a couple of hundred miles away and the other was more than a thousand miles from home. She ended up choosing the school closest to her family. Family support is important to the college student!

The process of finding the right school and jumping through all the hoops was the easiest part of transitioning from homeschool to college. The changes to our daily lives were more difficult. I'll just say my college student is doing better than her family. Oh, we are all adjusting but when I think back on that cute little baby and the young woman she has grown up to be, I can't help but want more of her!

Resources - Homeschooling and Down Syndrome

When we made the decision to homeschool, it took me awhile to discover that children with Down syndrome (Ds) learn differently from typically developing children and differently from others with different intellectual disabilities. While the knowledge I gained from general resources about learning and individuals with special needs was valuable to a certain degree, it wasn't until I discovered just how important specificity is as it relates to the unique learning needs of children with Ds are in creating an optimal learning environment.

Children with Ds have unique learning challenges which researchers have called a typical learning profile. So, what works for homeschooling families with typically developing children and those dealing with other types of special needs generally will not work for our children without significant adaptations to the material.

To create a more optimal learning environment, we need an understanding of the specific learning profile, which targets the child's strengths and weaknesses, and develop targeted interventions for learning success. In our children with Ds it means teaching to their strengths and understanding how their weaknesses impact learning.

Here are some of the many resources available:

Websites

These two websites have been the most valuable to me over the years. They provide up-to-date research into the way our children with Ds learn. It takes a very long time for research to appear in books intended for parents, teachers and service providers.

The Riverbend Down Syndrome Association
A wealth of information about how children with Ds learn and a homeschooling folder.

The Down Syndrome Educational Trust
Publishes research about Down syndrome from around the world.

Books and other Materials

Down Syndrome Issues and Information

Effective Teaching Strategies for Successful Inclusion: A Focus on Down Syndrome, published by the PREP Program

The Source for Down Syndrome Written by Catherine I. Chamberlain & Robin M. Strode

From Woodbine House:

Early Communications Skills for Children with Down Syndrome by Libby Kumin, Ph.D.

Classroom Language Skills for Children with Down Syndrome by Libby Kumin, Ph.D.

Helping Children with Down Syndrome Comminicate Better by Libby Kumin, Ph.D., CCC-SLP (ages 6-14)

Gross Motor Skills in Children with Down Syndrome by Patricia C. Winders, P.T

Fine Motor Skills for Children with Down Syndrome by Maryanne Bruni, BScOT

Teaching Math to People with Down Syndrome and Other Hands-On Learners by DeAnna Horstmeier, Ph.D. Book 1 and Book 2

Teaching Reading to Children with Down Syndrome by Patrica Oelwein

Mental Wellness in Adults with Down Syndrome by Dennis McGuire, Ph.D. & Brian Chicoine, M.D. (not just about adults)

My ebook Homeschooling Children with Down Syndrome compiles much of the information and research available - one stop shopping and it's free!

The books above are a great entry into the world of homeschooling and Down syndrome. These books speak to the syndrome and characteristics/traits commonly found in individuals with Ds and provide much valuable information presented in an understandable fashion. They provide a wealth of information and take the mystery out of therapies.