I Love Crackers!

Mommy said I hate using my hands.  When Mom gives me something to hold with my fingers, I always just toss them away and make them scatter all over.  Who could blame me when my fingers are so limp and droopy.  I have a hard time using them because I cannot control them properly and they feel as if they're asleep all the time!

One day, Mom gave me crackers to eat.  Instead of feeding me directly through my mouth, she placed it in my hand and encouraged me to feed myself!  It was hard and it's still is.  I dropped the cracker so many times before I finally got to bite it! But even though it was hard, I did not seem to mind since I love eating crackers so much! 

Mom said feeding myself is one big step to independence.  Eating crackers also helps me strengthen my hand and finger muscles!  It also challenges my problem solving abilities as I figure out how to move my fingers and hold the cracker as it gets smaller and smaller every time I bite into it.  Plus, it helps me improve my oral motor skills as lick, bite, chew, crunch, and feel the different textures scattered inside and around my mouth.  

Anybody want to have a cracker? 

Yum Yum!

Mattie


Note:  Please make sure that your babies are developmentally ready to handle these types of solid food.  A lot of times children with down syndrome take a longer time in developing oral motor skills - they may have difficulty in chewing, swallowing and may have sensory issues due to low muscle tone.  Also make sure that crackers or food you give to your babies are soft and will break into very small pieces in order to avoid any danger of choking.

Playing with Tissue Paper!

Mattie at 15 months, hates using his fingers to hold, pick up, or grasp things - especially when these things are small (no matter how attractive they are).  He refuses to use his hands to feed himself, nor does he like to hold his toys and play with them for a long time.  He usually just brushes all of them away with a swaying motion or grasps them and throws them away making them all drop and scatter everywhere.  Our OT tells us not to be worried as Mattie may still be in a stage where he's fascinated with the objects dropping or falling.  Our OT calls this "object permanence" or "cause and effect" where he's learning to see what happens if he let's go of the object, or if the object will continue to be there when he lets it go.  At the same time, Mattie at this stage is still developing his grasp, especially  his pincer grasp or his ability to pick up small objects (objects like raisins or peas).  While regular kids master this skill at around 9-12 months, Mattie will master this skill a little bit later.  I guess this has a lot to do with his low muscle tone.  With low muscle tone, fine motor skills such as skills using his hands and fingers are affected.  The development of Mattie's hand and finger muscles are delayed and they need to be strengthened as well.

With an effort to help Mattie enhance his hand skills, I try to give him some activities to encourage him to use his hands and fingers.  One of the activities which I think was a huge success was playing with tissue paper and pulling them out of the box!

For some reason, Mattie has this fascination with tissue paper.  Maybe it was the tissue's texture or maybe it was the awe of pulling something out of the box! Picture yourself in your baby's eyes, won't you think that it's like magic that something can come out of a box every time to tried to pull?  And so the never ending game of pulling tissue papers out of the box!  For Mattie, it was just fun and playing but for me, it was Mattie exercising his hand skills!

 

Learning how to hold things will enable Mattie to play and discover more about his surroundings.   Being able to grasp things is also his first step on the road to feeding himself! And guess what, as an added bonus, coincidentally Mattie learned how to feed himself with a cracker after a week of this tissue pulling exercise!  (See my next post: I Love Crackers!)


Mattie's Mom

Working on Sitting

 

This picture was taken when Mattie was 11 months old.  At this time, Mattie just learned how to sit on the floor without support.  He has also developed enough muscle strength and coordination to move in and out of sitting (from lying and sitting by himself), and has learned to sit well and balance himself sitting on the floor without falling.  Our therapist wanted to further strengthen Mattie's sitting abilities by giving him more challenging sitting exercises.  One of the exercises she asked him to do was sitting on a bench, just like what you see in the picture above.

Patricia C. Winders - P.T., in her book: Gross Motor Skills in Children with Down Syndrome, calls this the 90/90 sitting.  90/90 sitting requires Mattie to have his hips and knees bent 90 degrees.  Here he will learn to sit with his trunk up straight, hold his legs together, balance with his legs together and take weight on his legs with his knees bent. His feet will be flat on the floor and he needs to learn to actively use his feet to help him maintain his balance when he leans forward.   This sitting position, with legs positioned closer together, encourages Mattie to learn balance sitting on a smaller base as compared to sitting on the floor with a wider base.

Sitting on a smaller base is more challenging and difficult.  In this position, Mattie needs to learn how to hold his trunk up straight, because if he leans forward, he would fall off the bench. Sitting on a wider base or on the floor makes balancing easier as he only needs to prop his hands on the floor to feel more secure. 90/90 sitting helps strengthen Mattie's back and tummy muscles as he learns to use them for balance, and encourages him to hold his trunk up straight rather than having his back rounded and slouching.  Don't you think he has a pretty good posture?  Notice how he keeps his back straight as he sits on the bench? =)

To make the exercises all the more challenging and interesting, our PT added in reaching and turning while sitting activities.  This she said will help Mattie develop body and arm stability and control in preparation for fine motor skills.  She challenged Mattie to reach in different directions for toys while he was sitting on the bench.  By doing this Mattie learns to control the movement of his body while accurately reaching out with his arms.  He also develops better stability, and body strength as he uses his tummy and back muscles for balance.

 

I think this is a very good exercise.  Any exercise that would help Mattie strengthen his muscles and develop his balancing skills is good enough for me.  We all know that due to our children's hypotonic muscles, they need all the helpful exercises they can get in order to get stronger and thus do more challenging activities later on!  He's working on sitting here, currently he's working on pulling to stand and standing with proper weight bearing and posture.  Soon he'll learn how to cruise, and walk and run and even ride a bicycle!  Won't that be exciting?

Note:  Please supervise your child at all times.  He may fall easily until he learns to lift his trunk and balance.  It might also be better to provide your child with a bench that has just the right height.  The correct bench height would allow your child to sit on the bench with his feet flat on the floor and his knees bent 90 degrees.  Having a bench that is too high will make him be on his toes which will make him insecure and unstable.  Having his feet flat on the floor can make him work on is balance using a stable position.

Hello Sunshine!

The smile that makes our day complete =)

Mattie Turns One!

  

Matthew (Mattie) is God's most precious gift to us.  God has blessed us with so much that he chose us to be stewards of His precious gift.  I thank God that he gave us our little Mattie, entrusting that we will be the best parents for him.  Our prayer is for God to give us the wisdom to help Mattie grow up to be the person He wants him to be, and that one day God will use him for His glory.

To My Little Mattie, daddy and mommy love you very much.  You are such a blessing to us.  You enrich our lives everyday and give us joy that goes deeper than mere happiness. Love you Mattie!

Developmental Assessment

Today we went to Mattie's developmental pediatrician to have his 1 year developmental assessment.  His assessment showed the following details:

A. History: 2 episodes of pneumonia
B. Physical Examination: chest gurgling, hypotonia
C. Profile: Based on Griffith's Mental Development Scales
     Loco-motor: 9 months
     Personal Social: 7 months
     Hearing and Speech: 7 months
     Eye-Hand Coordination: 7 months
     Performance: 7 months
     Practical Reasoning: NA
D. Clinical Observations/Concerns:
     - good social skills
     - babbles
     - reaches and rakes
     - sits without support
E. Assessment:
     - Down Syndrome
     - global developmental delay
F. Recommendations:
    - continue early intervention with PT and OT
    - include feeding skills in OT regimen
    - Follow up in 6 months

Visiting the developmental pediatrician leaves me depressed and stressed every time.  Ever since Mattie's chromosomal test confirmed that Mattie has down syndrome, I have accepted, albeit painfully, that he will be have global developmental delays.  Consultations with the developmental pediatrician just reinforces this issue and it's the big GLOBAL DEVELOPMENTAL DELAY that's staring at me in the face all over again.  I know visits to the dev't ped should be helpful.  The dev't ped should be able to see what Mattie would need to develop and improve on, or what therapies we should start on or focus on next.  However with Mattie being assessed based on regular kids' developmental scales, he will undoubtedly always fall short.  This saddens me a lot and leaves me further with a lot of questions.  Questions like:  Are we not doing enough therapy?  Are the PT and OT exercises not done religiously at home?  Is there something wrong with Mattie's physical and occupational therapists?  Should I even be aiming for reaching the regular developmental scales?   Maybe we should work harder, more exercises perhaps? 

Why can't consultations be focused on the milestones or skills Mattie has achieved and portions on things to improve on? Don't you think it's better to hear something like "Your son has improved a lot since the last time, he's able to sit on his own, able to crawl, and pull to stand!  With a little bit more practice and exercise he can strengthen his muscles more and enhance his posture. Soon he can stand on his own and start walking!" Or maybe something like: " We're seeing delays here and there but that's expected, but I'm seeing lots of potential here and there so that's what we need to work on!" I just think that it would be better to focus on the positives than to compare ourselves with scales where we'll always fall behind.  But then again maybe I'm just a mom wallowing in bitterness.

What are your visits to the dev't ped like?  Please shed some light.

Mattie's Mom

A Bit of Learning and A Lot of Hugs!

Please bear with me and watch this video.  It's quite a long watch (3mins and 27 secs) but please please do take a look and tell me what you notice.

  

It is just the stage mom in me or is it Mattie beginning to sight read?  Did you notice that he begins to smile every time we get to the word HUG?  Is he beginning to recognize the word and so anticipate what comes next?  Whatever it is, I just love it when My Little Mattie smiles.  I think this is one more milestone worth celebrating!

As I do some research on several books and the internet, I happen to read a lot of good reviews about this reading program called Love and Learning.  It's a reading program specifically designed for children with special needs.  After careful consideration, my husband and I decided to try the first kit of this learning program and see if it works.  The first kit introduces letters and the sounds they make, and the associated word for each of the letters.  The kit is recommended for infants and toddlers to stimulate and improve vocalization and sight reading skills.  The program consists of a set of books, one book contains each letter of the alphabet printed on one separate page, the other books with the associated words and pictures for each of the letters.  The books are also supplemented by an audio CD and DVD that plays the sounds and videos of the letters and words in the books.

I know Mattie may be a bit too young for this learning material (after all he just turned 1!).  But I essentially wanted to start him on this program to 1. instill a love for reading (in addition to this, I also read to him a couple of other books during bedtime), 2.  introduce him to different sounds to encourage him to communicate and babble 3.  prepare him for sight reading and to familiarize him with letters and words (Children with down syndrome are found out to be very visual learners.  A lot of times they learn to read words before they can even say them!) and 4.  just to hang out, cuddle and have fun while we're learning.

I bet Mattie probably thinks that I'm just jabbering away and just making silly noises every time we do reading exercises.  I wonder if he is beginning to realize that these letters have meaning, or that words are actually made up of letters put together?  I wonder when the magical moment would arrive - the moment when he would start recognizing the words and begin reading them himself!  For now, the fact that Mattie sits with me all through out the session is rewarding enough.  While we wait for the magical moment, we will just have to consume ourselves with a lot of cuddling, a lot of loving, and a lot of HUGS.

Hugs to all,

Mattie's Mom