Ready to Read?

This summer, we have been blessed to spend time with a wonderful young lady who is just finishing her student teaching to become a special education teacher.  MG is exactly the kind of person our special little ones need; she has such a kind and gentle heart, and adores our special little ones.  Each and every child in her class will be loved, and seen as the beautiful child of God that he or she is.

MG, your mom shared with me that Matthew was your inspiration to study special education, and we are so honored by that.  But, this summer, you inspired us.  Your coming to help me with the kids not only helped me get some needed chores done, but you also helped renew my perseverance to help Matthew become all he can be. You told me about an article you read about teaching children with Down syndrome to read.

According to the article, researchers have found that children with Down syndrome learn differently than typically developing children.  Instead of starting with phonics, the researchers have found greater success teaching children sight-words.  They suggest simply writing some simple words on flash cards to begin to teach a child to read, starting with family names and some favorite things.  (When adults read, we don’t sound out each word, but rather our brains recognize each word as a whole.)  The entire article is fantastic, and I highly recommend that you read it through if you, or someone you know, is raising a child with Down syndrome.  Throughout the whole thing, I found myself saying, “Yes!  Exactly!  This is Matthew!”  This segment in particular:

… for some of the children signs were an easier and faster response mode than speech. They would look at a flashcard and appear to be concentrating on producing the correct spoken response, meanwhile their hands were already making a correct sign. This additional time needed to produce speech suggested to us that the children might have some sort of specific production difficulty with speech. Even when they knew what they wanted to say, they had difficulty in saying it. …The way in which the children substituted similar meaning words and signed when reading encouraged us to feel that they were more intelligent and had more understanding of language than they were being given credit for.

          …When we watched the video-tapes on which we recorded the children’s reading progress, we noticed that we had captured a number of sequences in which a child was trying to describe an experience or explain something to his mother for which his spoken language skills were inadequate. The child would resort to the combined use of single keywords and mime to try to convey his message. We were convinced again that the children knew what they wanted to say but could not express themselves in speech.

          There are a number of possible hypotheses which could be generated to explain these observations. For example, the child may not have mastered enough grammar to be able to construct the sentences that were being implied by the combination of words and gesture. Alternatively, we could postulate that the child was thinking in sentences but could not execute them in speech.

. . .

This is exactly what I’ve been saying for so long:  Matthew knows what he wants to say, he just can’t form the words!

The article goes on to describe some teaching strategies, the benefits of learning to read written language, and the increase in spoken language development the researchers observed in the kids using the technique.  To put it simply, reading enhances speech.

So, we decided to try it!  We started with just 3 words: “Matthew,” “car,” and “truck,” then introduced about 1 new word per day.  We practice his words for about 5 minutes at a time, just before rest and just before bed (because that’s when I have 5 quiet minutes to spend with Matthew alone!)

If he has trouble with a word, or is hesitant to speak it, we switch to “multiple choice” mode.  That is, we ask him to point to a certain word, which he does more quickly and easily than speaking it, especially if the word is new.

This video is just about 1 week after we started.  At the time, his newest word was “me.”  As usual, the only reward/motivator Matthew requires is applause.

I apologize for the camera angle – I had to prop the camera on a pillow.

Since then, he has learned the word “milk,” and “boat.”  I asked him what word he wanted to learn next, and he said “helicopter” and “hippopotamus.”  Maybe we’ll start with just one of those, and go from there, my ambitious child?

We’re so proud of you, Matthew!  And, many thinks to MG for the information and the inspiration.

As an added bonus, Jesse is learning the words, too!

Click here to read the article: Teaching Children with Down Syndrome to Read

Rediscovering the Joy in the Journey

Sometimes it’s hard.

When the world has raged such a war against children with Down syndrome – When politicians and judges admit that their goal is to eliminate the Down syndrome population – When the abortion rate for a prenatal diagnosis of Down syndrome is 90% or more; – I have to show this world how beautiful my son is, what a joy he is to my family, and how much he is loved and adored.

It’s easy to celebrate each small milestone, to rejoice over every small accomplishment, and to cherish each sweet snuggle.

But, my son has Down syndrome, and sometimes it’s hard.

Is it o.k. to admit that?

…If I do, will someone reading this think his life is not worth living? – or worse, that the child they are carrying is not worth having?  However, I would argue that each child, no matter how many chromosomes they have, has their own unique challenges, and that all good parents sometimes collapse on the couch at the end of the day and say, “This is hard!”

Usually, when things get difficult, I just don’t say anything.

(… Have you noticed how quiet this blog has been recently?)

A few weeks ago, things had been especially hard.  Matthew has gotten to a point where he has so much to say, but his verbal skills are not there yet.  And, the sign language we know is no longer adequate for him to express himself.  The result is frustration – for all of us.

Additionally, he hadn’t been sleeping well after our transition to bunk-beds, even though he loves being in the same room as his brothers.  I admit that the lack of sleep affects us all.

Then, for one full week, he decided to stop obeying.  Completely.  Matthew was testing us on every boundary, it seemed, and making us question every aspect of our parenting.  This kid has made us second-guess ourselves more than any other.  Were we expecting too much?  not enough? How much of what we asked of him was he truly understanding?  (By the way, he understands way more than we give him credit for.)

I was feeling more discouraged than I can ever remember feeling when I was blessed to have a wonderful visit with Libby, who understands these struggles in a way that few others can.  Libby is a mother with so much grace, whom I truly admire.  She is on a journey very similar to my own, and knows the unique challenges I face on a daily basis.  She knows that these frustrations in no way detract from the love I have for my son, or the value that he adds to our family.  With her, I can say just a few words – no lengthy explanations or justifications needed – and she gets it.  When God brought us together years ago, He knew we’d need each other!

She was also able to gently suggest that Matthew’s unusual behaviors (and possibly my ability to deal with them?) may have something to do with our brand-new baby, the fact that I had to recover from a c-section, which meant I could not pick up or hold Matthew for several weeks, and our house and routines have been quite disrupted … Hmmm…  She might be onto something there.

She’s just too cute! Matthew doesn’t understand why he can’t hold her every minute.

I returned home with a refreshed spirit.  Finding, once again, that this is not a lonely road – I have a friend traveling right along beside me.  It’s amazing how much courage that gives me to stay the course.

The very next week, Matthew returned to his usual, agreeable self.  And, as if he knew how much we needed it, he had a burst of new words and phrases, as well as several other words becoming more clear.  Each one caught me delightfully off-guard:

  • -“Whatcha doin’, Jesse?
  • SingingHoly, Holy, Holy” at Mass!  And, when I said, “Good job singing, Matthew,” he replied “Thank you!”  Wow – an unprompted, appropriate conversational response!
  • -“No Way!” (not that we really needed that phrase…)
  • -“No thank you.
  • -“Oh, my goodness!”
  • -“May I be excused?
  • -“Nice to see you!
  • -“Night-Night, Mommy.
  • -Verbally initiating play: “Micah, wait!
  • -And, I even caught him in the playroom singing the Dinosaurs A-Z song by himself: “A: za-za-za-saurus, B: za-za-za-saurus, C: za-za-za-saurus!

He’s back.  My boy who lives each moment with joy, who delights us with his smile, and who continues to surprise us.

Once again, when I am discouraged, when the self-doubt creeps in, God brings in a the gift of a good friend and an extra-helping of grace.  I am reminded that Matthew is exactly the boy God created him to be.  He gives me everything I need, and I pray that I can be the mother He created me to be.

To God be the Glory, now and forever.