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!