Emotions

 I am currently working on a Master's degree in Curriculum and Instruction and with this class I have chosen to take my passion of creating an after school program for children with cognitive learning disabilities and research different topics to gain credibility with this new program. As I was researching I came across an article called Working with Families of Disabled Children in this article it helped describe the emotions of a parent who has a disabled child. It was so true I thought I would share so that you would have a small glimpse into a parent's heart.
Self-Blame/Mourning
"It has been reported in the psychological literature that the birth of a
handicapped child, or the acquisition of a handicap, precipitates a period of
mourning, much as the more familiar experience of death does. Stages of
mourning are identified as denial, anger, open grief, and, finally, resolution
and going on with life [Kubler-Ross 1969]. The assumption is that mourning
is time-limited; going on with life implies a once-and-for-all resolution. Onceand-
for-all solutions seem quite superficial when applied to the complex tasks
of parents of handicapped children. Parents often need continuing help to
understand their own idiosyncratic responses to their child's needs while they
are helped to meet the needs of the child. For example, each stage of the
child's life requires parents to reconsider expectations of performance and
adjust to them [Rappaport 1965]. As families move through the normal
experiences of life, parents have to reassess and reintegrate continually the
meaning of the handicap, for themselves and for the child. This, in turn,
suggests that mourning may be an indefinite process that consumes considerable
quantities of psychic energy. Moreover, if one has not come to terms
with self-blame resulting from having taken drugs or medication or smoking
while pregnant with the child, or whatever real or imagined self-badness or
weakness one believes may have contributed to the handicap, the energy
requirement may become overwhelming. The vagueness of the diagnosis of
learning disability reinforces parental fears. Each one of the imagined causes
mentioned above can be translated by the parents into a form of neglect on
their part. The quixotic persistence of learning disability reinforces the
chronic state of mourning, partly because of repeated hopes that arise with
spurts of accomplishment or creativity in scattered areas of the child's
functioning. Each hope is battered by subsequent failures in academic and
social spheres. The daily experience of parents may be described as a constant
process of adjusting to new, unpredictable realities. Whether these are hopeful
or hurtful experiences, the inability to predict behavior based upon normative
outcome expectations creates in the parents a sense of loss of control of their
lives."

Reference:
Vigilante, F. (1983). Working with Families of Learning Disabled Children. Child Welfare, 62(5), 429-36. Retrieved from ERIC database.

Easy Link

You always wonder is it really that easy? I'd like to say that the Easy Link is as cool and witty as the Easy Button, but I would by lying!! The Easy Link is a computer toy made by Fisher-Price. For those who have never seen it, it is a device that hooks up to your computer, the child puts one of the character that it comes with (in this case Elmo, Dragon Tales, and a dog) in the device and it links the child to a number of websites where they can play games, puzzles, etc. The child can choose to change their people or even go to another website by just a click of a button, but it will only go to the websites for that particular character. It is also password protected so the child can not get out of the Easy Link and delete or rearrange anything, let alone access sites that are not approved.

We bought this toy for Jack a few years ago thinking it would be something he was interested in, but it just wasn't the case, however the other kids enjoyed it. After we moved we still kept the toy thinking Jack would some day enjoy it. But everything fell by the wayside and I forgot all about it until we moved Jack into his own room. Again I put it aside thinking he still wasn't ready until I went into his classroom a couple of weeks ago.

While his teacher and I were writing his curriculum Jack sat quietly at the computer with his earphones on just as content as could be, then I saw she had the Easy Link. I asked her if he used it and she said yes. So I dusted the one we had off and plugged it in to the computer in his bedroom...A light came on, his face lit up and he continued to say "thank you momma!" Every day since he has gotten on the computer, plugged in his character and clicked away. Through this program I found out how much he loves puzzles! Though most of the puzzles are 9 piece puzzles, he still loves the challenge. He enjoys the ability to move around the websites and play what he wants without worry about exiting out of the program and getting frustrated. Not only does he love it, but the kids have found a new passion for it as well. Who knew something so small could make such a big difference! So it may not be the Easy Button for me, but it is definitely the Easy Link to fun and excitement for him!

An affirmation

In my struggle to know when, where, with whom, and if this is true, I saw this post on FB that gave me the courage to press on! Amazing how God uses the little things to speak to you!! Crossroads will be coming soon and I can't wait to see what comes from it and the people I will be blessed with to help make this work!

A Hopi Elder Speaks
"You have been telling the people that this is the Eleventh Hour, now you must go back and tell the people that this is the Hour. And there are things to be considered . . .

Where are you living?
What are you doing?
What are your relationships?
Are you in right relation?
Where is your water?
Know your garden.
It is time to speak your Truth.
Create your community.
Be good to each other.
And do not look outside yourself for the leader."

Then he clasped his hands together, smiled, and said, "This could be a good time!"

"There is a river flowing now very fast. It is so great and swift that there are those who will be afraid. They will try to hold on to the shore. They will feel they are torn apart and will suffer greatly.

"Know the river has its destination. The elders say we must let go of the shore, push off into the middle of the river, keep our eyes open, and our heads above water. And I say, see who is in there with you and celebrate. At this time in history, we are to take nothing personally, Least of all ourselves. For the moment that we do, our spiritual growth and journey comes to a halt.

"The time for the lone wolf is over. Gather yourselves! Banish the word struggle from you attitude and your vocabulary. All that we do now must be done in a sacred manner and in celebration.

"We are the ones we've been waiting for."

-- attributed to an unnamed Hopi elder
Hopi Nation
Oraibi, Arizona

A quandary

As we were having kids people would always ask me how many I wanted and my answer would always be 6! Now I know that many would be rolling their eyes or their jaw would drop at the mention of anything mote than 3 let alone 6! I have always wanted a big family considering I had just the opposite. What I failed to realize in my request for that many kids, was to be specific. Yes I have learned over the few years of raising kids that he has a sense of humor! So he decided to give me my 6 kiddos in 4. Like I said I never specified that I wanted 6 individual bodied children, just 6 kids.

If anyone has met my youngest you would understand that he is definitely 3 in 1! Now as I am looking at my family I question is this normal? So since I have never been around children with disabilities till J, I asked his teacher if his hummingbird like qualities were typical for him? To which she said NO! my understanding is that it is often difficult to get children with DS up and moving around, most of them are quite content just being... J is not this way, he is impulsive, busy, asks the same question over and over again, and most times defiant. Now when I think of J I think differently with him than I do with the other kids, it's necessary, but often I forget to step back and compare symptoms... Well because quite often it's never in our best interest to compare (which is a whole other post!). so once I took a step back I realized that most of the behaviors were behaviors I had seen before in my other kids who all have been diagnosed with either ADD or ADHD, which led me to make a decision to look further into this. After his teacher gave me her observation form I realized that we are dealing with the same thing.

Now I have never been a fan of medication, but to see what a positive effect it has had on my others, I am hoping it will have the same positive experience. But my concern is how will it change him??? Will he still be the same little man everyone loves? Will it change his behavior to the point where I don't see the boisterous little man everyone craves for hugs? Who know? All I know is that there has to be something that is a happy medium, one that will allow him to focus and still maintain the little happy go lucky man everyone loves and that hopefully we will no longer have to leave a place for fear of impulsive behaviors that warrant constant, grueling, exhausting watch over him. It will only be trial and error, but we'll find out more in a couple of weeks when we go see the doctor! So for now we are in a quandary as to our next step and how differently our future will look!