Therapy — 5 Minutes for Special Needs — Page 2


Our Role & words hurt

So I was thinking, draw 3 circles on a piece of paper.  One inside the other, so really you have 3 cirles around each other(as pictured)
The inner circle is our children, this is their culture of being a child with special needs.
The middle circle is us, the parents.  We’re not in the same circle as our kids because we’ll never fully understand what it’s like to be in that inner circle.  Even if, as parents, we have special needs.  We understand that as individuals, things have changed and are not the same for our children as it was for us in our younger days.
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Learning…I’ve not written about homeschooling yet so I thought maybe this would be a good time.  Homeschooling isn’t so typical for us, we have many challenges to get over.  We do use therapies as part of our daily routine (even if we are still on sabbatical from professional therapies at our local hospital).  We do a lot of reading…Last year we read 163 books (several times each).   This year we’re working on doubling that.  We’re in the 200’s right now.  Things that I have noticed lately are that my son appears to be more aware of his surroundings and is learning to place sounds. 

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How far he’s come. How far we have to go.

She wailed that B had her popcorn. Popcorn being used loosely as the container that once held popcorn kernels, gladly accepted by her at its end as an addition to her kitchen belongings….this thing that B was handling in front of her (the nerve) with an item of his already stuffed inside. To keep my headache from getting worse, he was asked to take said item out and put the (apparently) deeply cherished plastic popcorn container back in her kitchen in its rightful place.

I watched as he maneuvered the lid off, took his item out, then re-twisted the lid back on.

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Botox Dip

My son had his Botox treatment this week.  I knew about 2 weeks ago it was needed.  It’s funny how that works.  At first you think, is it worth it?  Am I doing it for him or for me?  Actually, both.  I do it for him. His spasticity is so severe, he could curl into a ball, despite my stretching him daily.  He receives it basically from head to toe… I do it for him because it loosens up his shoulders and chest to the point we can move his arms around, up and down, stretching out the elbows…we must, we must, we must increase our bust. 

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Gourmet baby from the getgo…

Do you cook seperate for someone in the family?  Do they have special dietary restrictions or needs? 

My son has a dairy allergy.  I say an allergy because it appears that if we avoid it all together we have a sweeter life.  We’ve never had an official test, but doctor’s have said why test you already know what works.  If he gets ANY dairy during a day, he’s fine, but come 2:00 in the morning life is much more…hmmmm…trying to come up with a nice word….sour.  He screams and scream and screams all night even through the morning.  So we found out early on if we avoid it all together we can sleep through the night.

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Let’s Get Real

I’m a realist.  Because of that, I sometimes get frustrated when it comes to raising a child with Down syndrome.  I want to know what is realistic and my questions are usually met with, “Don’t put limits on your child.  She can do anything she wants.”

Well, yes, and no.  I mean, yes, if we limit our children and say, “Oh, no, she can’t do that.” then she is going to live up, or down, to that expectation.  That’s true for any child or for anyone for that matter.  But let’s be realistic here.  There ARE limits.

Let’s take me for example. 

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Learning to ride…one step at a time…

A Cowboy Needs a Horse

Johnny lives in a big city, but has everything a cowboy could want
(Everything, everything)
He has a place to pan for gold
(Panning, panning)
And he has time to shoot a buffalo everyday
(Shooting, shooting)
And every night, he dreams he’s a cowboy riding the rangeFinally found the words to this song, it’s on a disney sing along VHS we have and we sing it all the time.  (well me & Tristan…and he seems to like it 🙂

Ridin’, ridin’ along…

Oh, a cowboy needs a horse, needs a horse, needs a horse
And he’s gotta have a rope, have a rope, have a rope
And he oughta’ have a song, have a song, have a song
If he wants to keep ridin’

Now a cowboy needs a hat, needs a hat, needs a hat
And a pair of fancy boots, fancy boots, fancy boots
And a set of shiny spurs, shiny spurs, shiny spurs
If he wants to keep ridin’

Oh, the fence is long, and the sun is hot
And the good Lord knows that a cowboy’s gotta keep
Ridin’, ridin’ along

So he gets himself a horse, and a rope, and a song
And he finds himself a hat, fancy boots, shiny spurs
And there’s nothing more he needs, or can have, or can get
If he wants to keep ridin’, ridin’ along

Spurs, shiny spurs
Boots, fancy boots
Sings a western song
And a horse
If he wants to keep ridin’, ridin’ along…

Tristan has been working up to the ridin’ for about 5 weeks now. 

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Have You Tried Sign Language

Sign language seems to be the current cure-all for those dealing with speech issues with their children.  You are bombarded with it either for your toddler who is just learning to talk or for your child whose speech is delayed.

In the beginning I had a positive attitude about sign language.  I introduced it to Peanut at a young age and even purchased 3 of the Signing Times DVD’s which she enjoyed watching.  However, by the time Peanut was nearing her third birthday, it became clear to her dad and I that sign language may actually be hampering her speech development instead of assisting it. 

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Is that too much to ask?

This week my husband’s grandmother passed away.  She was 93 year old, never took more than a multi-vitamin in her life.  She did however, several years back, begin her journey with Alzheimer’s Disease.  It was a long journey, spending 10 years in a nursing home.  She had 5 children, 12 grandchildren…and so many great grand children there’s just to many to count…and even one great great grandson.  She had an amazing life. 

So this brings me to mortality…I wonder what will happen to my son when something happens to me or my husband.  He should live long after us, but who will take care of him? 

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It Will Come

“It will come.”  Three simple words meant as encouragement.  Meant to give hope.

They don’t.

In fact, often they are received as a dismissal.  As a means of telling me it’s not a big deal.  Because I know this phrase is not meant in the way I perceive it, I simply smile and say, “I hope you’re right.”

What will come?  Speech.  Peanut is 6 years old and is still non-verbal.  I don’t mean she has a limited vocabulary.  I mean she is non-verbal.  She say’s “No.” clear as day.  She says a version of “Yes.”  The rest is grunts, babbling.

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