A Moment in His World

I’ve been concerned lately at Noah’s growing frustration and lack of cooperation.  Most attempts by me to work with him on refining his speech is met by resistance.  He is starting to be noncompliant in our school time, and I’m just sensing barriers going up any time I push him towards doing anything remotely academic or speech related.

The thing that bothers me the most is his aversion to making eye contact with me when he knows I’m trying to work with him.  Am I pushing too hard?

Probably.

But I can’t just let him stay where he’s at.  I mean, it’s my job to push him to do great things, right?

No answers here, but I did enjoy a few minutes with him yesterday evening.

I met him where he was at.  And he let me stay awhile.

Noah was sitting on the couch looking at a book.  (YAY!)

I walked in the room and without saying a word, I was able to attract his attention.  I signed to him without saying a word that I wanted him to come with me so I could brush his teeth.

He signed back – “YOU come HERE!”

So we went back and forth a few times playfully signing “You come here,” and “No, you come here.”

But I really did need to brush his teeth, so I cozied up to him on the couch.  By this time he was laughing.

I signed “You ride.”

That got his attention.  So I gave him a piggy back ride to the bathroom.

Mind you, it is VERY unusual for us to use sign language without at least me saying the word out loud too.  But this communication exchange we had was totally silent, and boy did I have his attention!

So we got to the bathroom and continued our silent game, and I lived for a few minutes in a Noah-controlled world where no speech was necessary.

Magic.  Absolute magic.

After a bit Noah caught on I was up to something, so he reverted back into his uncooperative self, but I had him for a few precious minutes, and oh, the fun we had!  What a blessing to hear Noah laugh and laugh and laugh.

There is something special that happens when you and your child look into each others eyes and use language other than speech to communicate.  It doesn’t have to be formal sign language.  There’s a lot you can communicate just by gestures.

Try it.  Even if your child doesn’t have a speech delay, try making a game out of communicating without the spoken word.  I often see the spoken word as a key to the world around Noah, but that spoken word can also be a barrier.

Hearts know no words, but they know each other.

 

Related articles

• Sign Language (mattmilbrandt.wordpress.com)
• Show Them ‘Signs’ of Understanding (ilearnnearn.wordpress.com)
• Sign language courses in college increasingly popular (mercurynews.com)
• Free Printable Cutom Book for Target Speaking Words (wordsofhisheart.wordpress.com)

Robert Ethan Saylor – An Update

I know I’m pushing the line here and trying the patience of other moms of children with special needs with my follow-up on the Robert Ethan Saylor (commonly known as Ethan) story.  If you’ll remember, I posted my opinion here:  http://wordsofhisheart.wordpress.com/2013/04/11/robert-ethan-saylor-when-push-comes-to-shove-what-do-we-really-believe/ about the young man with Down syndrome who died at the hands of off-duty police officers when he refused to leave a movie theater after the movie was over.  After a struggle, the police officers handcuffed him face down on the floor which resulted in Ethan dying of positional asphyxia.  The police officers were mercilessly attacked on-line and the special needs community was outraged that police handled Ethan in such an aggressive manner.

My take on it, which was quite contrary to popular opinion, was that as horrible as this death was, the police officers were simply doing their job.

Thanks to one reader in particular who had done significant research on this case, I have been educated a bit since then:

1. Police officers are specifically trained to avoid the dangers of positional asphyxia, especially when dealing with people who are overweight the way Ethan was.  (This I have verified with my own research.)
2. The police officers were actually off-duty sheriff deputies who were being employed as plainclothes security guards.  (This I have not been able to verify.)  It is likely Ethan never knew these men were police officers.
3. Ethan’s aide who had left him in the theater alone returned in the middle of the struggle, and the police officers refused to allow him to try to defuse the situation by communicating with Ethan.

The failure of the officers to preserve Ethan’s life has very little to do with Down syndrome.  Good officers diffuse bad situations.  It was probably obvious very quickly that Ethan had a cognitive delay, and as soon as his aide showed back up on the scene, the aide should have been enlisted in diffusing the situation.

As far as the positional asphyxia, the big question here is how long was he left in that position.  There’s been a lot posted around the internet accusing the officers of hog tying Ethan, yet that is not what happened.  He was simply handcuffed while lying on his stomach at the bottom of a heap of officers.  The latest things I’ve read indicate that he stopped breathing in the midst of that struggle.  He was combative and the officers subdued him the only way they could at the time.  I’ve searched for official reports that indicate the details of his time on the floor, and I have not been able to find one.

Uniformed officers have already taken the first step in diffusing a situation – identifying themselves in a very concrete way as police officers.  For a person with limited cognitive ability or communication disabilities, a uniform can speak volumes.

While I still adamantly cling to the assertion that it is complete and utter hypocrisy to on the one hand insist that people with conditions like Down syndrome or autism are just like everybody else and should have the same opportunities as everybody else and should be treated the same as everybody else but when push comes to shove they shouldn’t be held to the same standards as everybody else (i.e. as in breaking the law or not submitting to rules or even to cultural norms).  I think the truth lies somewhere in between.

The cry of my heart is it is okay to be different!   It is okay with me that my son with Down syndrome is not going to be competing with your son for a spot on the NBA or that college scholarship.  He has his own strengths and will contribute his own unique gifts in this lifetime.  And do I want you to have compassion on him?  YES!  Do I want you to give him an extra hand?  YES!  Do I want you to go out of your way to include him and open up opportunities to him?  YES!  And will I do my part to keep him out of any situation that could possible put anyone else in danger or significant inconvenience for that matter?  YES!  And if I fail, do I hope and pray that you will show him mercy?  YES!

The latest update I’ve received from the National Down Syndrome Congress http://ndsccenter.org/ is that they are working with government officials to come up with materials specifically designed for law enforcement when they come in contact with individuals with Down syndrome.  One has to scratch their head when trying to find consistency between that and their national slogan, “We’re more alike than different.”

Another blogger out there has very eloquently elaborated on this concept along with her grave concerns surrounding training officers specifically in regards to the Down syndrome population.  http://gardenofmyheart.wordpress.com/2013/04/21/open-letter-to-ndss-and-ndsc/.

Although it seems like common sense would be sufficient as far as officer training in situations involving people with cognitive impairments, it may not be.  But folks, if we’re going to train officers, let’s cover our bases and train them for dealing with all people with cognitive impairment and communication disorders, not just people who happen to have an extra 21st chromosome!  If every syndrome and spectrum disorder releases their own training material, our officers are going to have to spend more time in the classroom than they will on the streets, and I don’t know about your town, but my town needs them on the streets, and in the malls, and yes, even in the movie theaters.

Although I cannot agree with everything laid out in this on-line petition, I wanted to make it available to my readers.  Read it for yourself and go where your conscience leads you:  http://www.change.org/petitions/justice-for-robert-saylor.  I’d like to see Saylor’s death investigated by somebody other than the Sheriff’s Office, but I’d have to hold my judgment until the facts are sifted from the opinions and speculation.

In any case, my sympathies continue to go out to the family and friends of Ethan Saylor.  World, this was our loss.

The following is courtesy of www.askville.amazon.com.

“Society must make it right and possible for old people not to fear the young or be deserted by them, for the test of a civilization is the way that it cares for its helpless members.~Pearl S. Buck (1892-1973), My Several Worlds [1954].”
“The test of the morality of a society is what it does for its children.” ~Dietrich Bonhoeffer
“A decent provision for the poor is the true test of civilization.” ~Samuel Johnson, Boswell: Life of Johnson
“The most certain test by which we judge whether a country is really free is the amount of security enjoyed by minorities.”~John E. E. Dalberg, Lord Acton, The History of Freedom in Antiquity, [1877].

“…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. ” ~ Last Speech of Hubert H. Humphrey

“A nation’s greatness is measured by how it treats its weakest members.” ~ Mahatma Ghandi

“Any society, any nation, is judged on the basis of how it treats its weakest members — the last, the least, the littlest.” ~Cardinal Roger Mahony, In a 1998 letter, Creating a Culture of Life

“The greatness of America is in how it treats its weakest members: the elderly, the infirm, the handicapped, the underprivileged, the unborn.” ~Bill Federer

“A society will be judged on the basis of how it treats its weakest members and among the most vulnerable are surely the unborn and the dying,” ~Pope John Paul II

. . . And here’s what Scripture has to say about the matter:

Matthew 25:31-46

New International Version (NIV)

The Sheep and the Goats

³¹ “When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. ³² All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. ³³ He will put the sheep on his right and the goats on his left.

³⁴ “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. ³⁵ For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, ³⁶ I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

³⁷ “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? ³⁸ When did we see you a stranger and invite you in, or needing clothes and clothe you? ³⁹ When did we see you sick or in prison and go to visit you?’

⁴⁰ “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Driving Our Way Through the ABC’s

I combined a couple activities I saw on Pinterest and came up with this:

I bought the cars at the Dollar Store – three for a dollar.

The Littles (Noah -6 with Down syndrome, Bella 4 and Seth 3) love this new activity!

Here’s the scoop:

Activity:  Driving Our Way Through the ABCs

Supplies Needed:

1. 26 toy cars.
2. White craft paper from a roll
3. Markers
4. Circle stickers (found in office supplies for garage sale pricing)

Preparation: 

1. Draw a road on craft paper with separate “garages” marked in order from A-Z.  Add decorations like parks and trees – get as fancy as you like and perhaps even let your little one help.
2. Write a different letter on each circle sticker,  A-Z. 
3. Place one sticker on each car.

Directions:  Have your child drive each car along the road to its designated garage.  For children new to the alphabet, line up the cars in order so that the first car goes to the first garage which will be marked A, the second car will go to the next garage marked B, etc.  For children more familiar with the alphabet, mix up the cars so the child will have to search for the matching letter.

(Or you can just look at the picture and probably figure out everything you need to know.)

Look out Mom – this activity just might keep Junior busy for the whole afternoon!