Down Syndrome Days

The best teachers ever!

jane — Fri, 02 Jul 2010 03:52:01 +0000

These two women have been the best teachers! They even attend events happening in their student’s lives outside the classroom. They have a tenderness and love for their class like no other I have seen. You will be able to hear that in their comments about the vicissitudes of these beautiful children.

The woman on the left was awakened to the idea of becoming a Special Education teacher at age 12 after visiting relatives who had a Down syndrome toddler. She never varied from her decision — to the benefit of every child she has nurtured in her classroom.

On the other hand, the woman on the right never expected to go into this line of work. She volunteered daily at her children’s elementary school just to be on campus and heard of a paid opening in a Special Day Class. Having spent some time there, she knew thet she cared for those children and felt qualified for the job as a result. Again — to the benefit of all the children in the classroom.

This set of teachers have been together in the same classroom for 10 years. They ask a lot of the children, and the children consistently meet up with what’s asked. Both of these teachers encourage, encourage, encourage, and I have also watched them wait and wait for individual students to respond because it routinely takes time for students to pull their best performance out of their brains and bodies.

Love and patience — that’s what they have needed to help their students feel calm and succeed, and that is just what these ladies bring to their classroom.

We talked just at the end of the last day of school. Normally the classroom is fully stocked with books and decorated with the children’s work.

May 2010

jane — Sat, 01 May 2010 22:47:39 +0000

We found out about our baby’s diagnosis in July before he was born in December. I wish I knew then what I know now about what to look for on a sonogram. I would have been spared the wondering for two weeks until the results of the amniocentesis came back and I received the results by phone. I was glad to have the chance to know ahead of the delivery, but my mother was surprised that I preferred it that way. Every parent and situation is different.

When and how were you told about your loved one’s diagnosis?

April 2010

jane — Thu, 01 Apr 2010 21:14:44 +0000

With a single-mindedness and a discriminating palate, Down syndrome kids seem to enjoy a very small circle of desired foods. Early on my son ate nothing but fruit and grain bars. “Not very interesting to me, but at least as good as a vitamin,” I would tell myself to try to defuse my guilt over the lack of variety in his diet. At one time he ate pancakes, toast, or eggs, but we’re virtually down to hot dogs or chicken nuggets now (with, of course, any cake or cookies he can find).

What are the foods that your loved one simply cannot do without, and from which he/she will not deviate?

March 2010

jane — Mon, 01 Mar 2010 19:42:52 +0000

Let’s look on the light side . . .

What is the funniest thing you can think of that you somehow ended up in the middle of with your Down syndrome loved one?

For example – - We, my 3 children and a couple of their friends, were just finishing checking out at Target one day when my son (age 3) threw up — all over everything: the cart, the floor, and some even went into my mouth! I wish you could see what we saw in the look on the face of that checker!! We were mortified, reminded the checker to have the cart cleaned, and slunk our way out of the store. Once safely in the car and sensing the children’s abject humiliation, I said the only thing I could think of: “Well, we can either laugh or cry.” And we just all busted up laughing. We laughed all the way home till we were nearly sick and laughter tears just streamed down everyone’s faces.

Indelible is the look on that man’s face . . .

I know if we talked about it today we would all still laugh till we hurt!

Your Questions . . .

jane — Wed, 03 Feb 2010 21:03:09 +0000

If you are wondering what other mothers, relatives, or friends are thinking on any Down syndrome-related topic please post it as a comment here. We can all find out what others know or have experienced in whatever area you may choose.

February 2010

jane — Wed, 03 Feb 2010 18:18:07 +0000

Former university president, Jeffrey R. Holland, shared this thought-provoking story in 1999:

Thirty years ago last month, a little family set out to cross the United States to attend graduate school–no money, an old car, every earthly possession they owned packed into less than half the space of the smallest U-Haul trailer available. Bidding their apprehensive parents farewell, they drove exactly 34 miles up the highway, at which point their beleaguered car erupted.

Pulling off the freeway. . . the young father surveyed the steam . . . then left his trusting wife and two innocent children–the youngest just three months old–to wait in the car while he walked the three miles or so [to where] water was secured . . . and a very kind citizen offered a drive back to the stranded family. The car was attended to and slowly–very slowly–driven back . . . for inspection . . .

After more than two hours of checking and rechecking, no immediate problem could be detected, so once again the journey was begun. In exactly the same amount of elapsed time at exactly the same location on that highway with exactly the same pyrotechnics from under the hood, the car exploded again. . .

Now feeling more foolish than angry, the chagrined young father once more left his trusting loved ones and started the long walk for help . . . This time the man providing the water said, “Either you or that fellow who looks just like you ought to get a new radiator for that car.” For the second time a kind neighbor offered a lift back to the same automobile and its anxious little occupants. . .

“How far have you come?” he said. “Thirty-four miles,” I answered. “How much farther do you have to go?” “Twenty-six hundred miles,” I said. . .

Just two weeks ago this weekend, I drove by that exact spot . . . That same beautiful and loyal wife, my dearest friend and greatest supporter for all these years, was curled up asleep in the seat beside me. The two children in the story, and the little brother who later joined them, have long since grown up . . . The automobile we were driving this time was modest but very pleasant and very safe. In fact, except for me and my lovely Pat . . . nothing of that moment two weeks ago was even remotely like the distressing circumstances of three decades earlier.

Yet in my mind’s eye, for just an instant, I thought perhaps I saw on that side road an old car with a devoted young wife and two little children making the best of a bad situation there. Just ahead of them I imagined that I saw a young fellow walking . . . with plenty of distance still ahead of him. His shoulders seemed to be slumping a little, the weight of a young father’s fear evident in his pace. In the scriptural phrase his hands did seem to “hang down.”. . . In that imaginary instant, I couldn’t help calling out to him: “Don’t give up, boy. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead–a lot of it–30 years of it now, and still counting. You keep your chin up. It will be all right in the end. Trust God and believe in good things to come.”

What were your experiences when you thought you would not have the strength to keep going – - and what could you say to yourself looking back now?

Sharon

jane — Wed, 03 Feb 2010 03:18:12 +0000

Meet Sharon – - she is the coordinator of a weekly activity for persons with special needs which is sponsored by her church. The hour-long gettogether consists of 20 minutes each in whole group discussion, small group instruction, and (the favorite) singing time. All the staff are volunteers, some related to the attendees, and some not. Sharon describes what makes her efforts so worthwhile. There is a joy in her service.

A question for all . . .

jane — Sat, 02 Jan 2010 01:30:56 +0000

My niece called last month telling me that her friend had a 15 minute old baby and had just been told that the baby was diagnosed with Down syndrome. She pleaded: “What should I tell her!?!” I was eating in a loud LA sports bar watching three football games at the time so the question took me by surprise, but the first thing out of my mouth was “Is it her first?” “No” she replied. I said: “Tell her that she will love this baby exactly the same as she does her other children — that this baby’s face will be equally enchanting to her as her other children’s faces.” My niece said: “She’s just crying and crying.” So I told her to also add that ”It’s allright to be sad for a while. You have to mourn what you thought you would have, but you have lost. It is not disrespectful to this baby to mourn that one.”

My own Down syndrome son is 14 years old – – hard to believe it’s been that long, just like all kids who grow up before you know it. I was just wondering how anyone else with a Down syndrome child might have responded to that sudden question. So, I decided to put the question out in the cyber world to anyone who has been given the same news and might be asked the same question:

What would you have said?

Photo Gallery

jane — Sat, 02 Jan 2010 00:46:52 +0000

Me and Sissy!!

My brother loves me too!

Proud of our handstamps from the zoo!!

Siblings

jane — Sat, 02 Jan 2010 00:40:03 +0000

Having a sibling with Down syndrome teaches children some wonderful and powerful life-lessons.

What do siblings of the Down syndrome people you know have to share?

This is a video made by a 5th grade sibling of a Down syndrome sister teaching others how to treat those who are different from themselves.