Facing The Sunshine

Wednesday Video - Down Syndrome in the 21st century

2011-05-18T21:03:00.000-07:00

When I look at AngelicA now and I think back to the time she was born, I feel that the doctors at the hospital held out absolutely no hope for us. I can still remember the conversation with the pediatrician. He told us that our baby would never be independant, that she would have to go to a special school and went on and on about what she wouldn't do. I remember staring at the little cuddly toy wound around his stethoscope and thinking - does he have anything nice to say? He was pessimistic about what the future would be. At best he was too, too pragmatic basing all his pragmatism on his text book knowledge of what Down Syndrome is. I'm not really angry or anything but I really wish doctors knew the facts...that today a child born with Down Syndrome can have a full life, just like everyone else. And this clip proves it...

Thanks for reading,
JD

Wednesday Video - The Push

2011-05-11T04:12:00.000-07:00

My little big girl Ellie, sweet as she is, can be very clingy sometimes. Whenever we go to some new place, she climbs on to my lap and wraps her arms around me. At times, she clings to me even at home, almost all through the day. I tried talking to her, explaining to her, even being a little stern but nothing worked for too long.

One evening as were driving back from some place, she decided she wanted to sit on my lap again. It was dark and she must've been tired, so she whined and whined. All my attempts to reason with her were met with more whining. Then daddy told her a story about the mommy birds and the baby birds, and how the mommy birds push the baby birds out of the nest not because they don't love them but because mommy bird knows that the baby birds need to become independent and learn to fly. The whining stopped as Ellie listened to the story intently. And we had a peaceful ride home after that.

As luck would have it, I found this lovely clip in my mailbox today and I played it for her. I think she finally understood...

Thanks for stopping by,
JD

Wednesday Video - A dedication to our angels

2011-04-20T05:43:00.000-07:00

There's just one word to describe this clip. Awesome! Sit back and enjoy the lovely visuals and music. And when you're done, let me know what you think of it.

Thanks for visiting,
JD

Everyday Miracles

2011-04-19T03:29:00.000-07:00

More God | Forward this Graphic

Something really amazing happened yesterday. As I was leafing through the newspapers in the morning, a little leaflet slipped out. It was an announcement for a new children's hospital in my neighborhood and somewhere in all the details one line stood out. They had an pediatric occupational therapist for kids with special needs. And this wasn't just any occupational therapist - she was the former head of the occupational therapy department at one of the largest government hospitals in our city. I was like wow!!!

So I called the hospital right away and the staff scheduled an appointment for the same afternoon. Now I haven't really written about the trouble we were having in finding a good occupational therapist. We have had to change therapists three times for various reasons. Because of this, AngelicA's fine motor skills are not as good as they should ideally be, even if we factor in the delay for kids with Down Syndrome.

When we finally saw the therapist, it was like a dream. The facility was nice, they had a nice big aquarium right next to the therapy area and AngelicA had her little nose glued to it for most of the time we were there.

Our meeting with the therapist went off really well. She did an assessment and drew up an therapy plan for Angel. What I found most encouraging and comforting was that she was positive about Angel and her future, she was empathetic, kind, caring and so good with Angel that my little girl almost went and sat on her lap. It was a big change from having to drag her for therapy while she resists, kicking and screaming. And the best thing is that it is right next door and not half way across town so I won't be kicking and screaming (in my head of course) either.

I have a feeling this will go well and I am so, so happy. It feels like a prayer was answered before it was even on my lips. A little miracle. Reminded me of a homily I heard a long time ago. The priest had read a beautiful poem and talked of the little miracles that happen in our lives everyday, those which we often fail to notice. I found a poem (not sure if it was the same) and thought I should share it with you.

Everyday Miracles

By Walterrean Salley

Miracles happen
Every day
To many a folk
In many a way.
They’re not hidden
Beneath a tree,
But manifested
For all to see.

A mother giving
Sacred birth.
A flower shoots up
From the earth.
A wanderer
Who finds his way.
A survivor
Sees another day.

A beggar gets
His next meal.
A patient that’s
Completely healed.
The ocean with
Its shades of blue.
The sky with
A many hue.

Everywhere
And every day,
Miracles happen
In every way.
You don’t have
To travel far—
Just look around
And there they are.

You can find the poem here.

Thanks for reading,
JD

Ever little thing she does is magic...

2011-04-15T02:06:00.000-07:00

Only where children gather is there any real chance of fun.
~Mignon McLaughlin, The Neurotic's Notebook, 1960

As a parent I feel blessed that I am privy to a wonderful world. It's like having the best seats in the circus, with two resident clowns. A long time ago, when Elle was much younger, I was trying to explain to her what the 'magic words' are. I thought I did a pretty good job of it until I asked her "So what are the magic words?". Pat came the reply "Abracadabra?"

And now I have a budding comic in my 28 month old. The best thing is she has a great sense of timing and she knows when she's being funny. It's a treat to watch her break into giggles at just that moment.

Her unsuspecting victim is almost always daddy, Jason. Daddy likes nothing better than a kiss from his little girls when he gets back home from work. His princess Elle usually obliges, but Angel - the little monkey that she is - makes a game of it. She comes up to him, mouth puckered and then she runs right past him, laughing her head off.

The girls also enjoy some rough play time with their daddy who has just one rule - no tickling. AngelicA listens to him very intently and nods. But when daddy isn't looking, she goes right up to him and tickles him.

Recently, she peeled off some stickers and stuck them all over her face. Elle found it so funny, she couldn't stop laughing. And since then, AngelicA never lets go of stickers, plastering her little face with as many as she can to amuse her older sister.

Sometimes, it's the things she says. She's busy reading these days and it's kinda cute when she makes up stories. We can't get all the words she uses but we're pretty much sure that she's quite a story teller. A few days ago, she signed she needed a drink. "Would you like a glass of water," I asked her. "No," she said "Juice." It was the first time she said two words together. I was so excited.

And then there are times when she's quite naughty. She waits for mommy to be out of sight so that she can annoy her big sister and then pretends to be completely innocent when mom steps in. This Angel seems to have traded her halo for a pair of horns :)

Thanks for reading,

Wednesday Video - Oil for your lamp

2011-04-13T00:35:00.000-07:00

Here's a nice clip for women. Special needs moms might find that it 'speaks' to them and they wouldn't be far from the truth. We moms are very good at putting ourselves last, aren't we?

Hope you liked it.

Thanks for stopping by,
JD

Wednesday Video - Don't give up

2011-04-06T06:12:00.000-07:00

I'm one of those people who would have to scrape the bottom of the barrel if I had to muster up an ounce of perseverence. Tenacity has never been one of my strenghts and being a special needs mom throws my grit (or lack of it) into sharp relief. But not to despair, I tell myself, there's hope. This little video can help, atleast for now.

Thanks for stopping by,

Wednesday Video - Dream Big

2011-03-30T02:40:00.000-07:00

There are days when I feel I desperately need some inspiration. Something to perk me up, like a nice steaming cup of coffee on a cold winter morning. Today was one of those days. I was in one of my contemplative moods, mulling half baked plans and a Big Dream in my head, my thoughts steering towards the very real possibility of failing. Yes, I needed a good pep talk.

And then I found this clip...

And boy did it do its magic on me. I think I'll save the coffee for some other day :)

Thanks for stopping by,
JD

Wednesday Video - No Limits

2011-03-23T05:41:00.000-07:00

I am back to blogging after a long hiatus. And I wanted to start off with something really special. So starting this week I will be posting an inspirational clip every Wednesday.

This week's clip is of an amazing guy - Nick Vujicic. Nick was born without limbs and yet is a shining example of someone who beat the odds, who believed he had a lot of abilities despite his disability. Nick's story is truly inspirational and I am happy that I found some great videos of him to share with you.

If you're wondering why Nick? Well, here's the short story. In the days following AngelicA's birth, the phase which I still look back upon as a sort of a low patch, the newspapers and magazines were filled with stories of people who made it in life despite being born with disabilities. Strange coincidence, right? Just when I would be thinking what would become of my baby, there would be some inspiring article somewhere to remind me that all was not lost, that there is still hope. When I look back I like to think of those moments as my 'Hand of God' moments.

Nick's story was the first that I read in those days. I'm not exactly sure but this story could have been one of the things that lifted me to see the positives in my situation.

Here's another clip:

After watching these clips, I can't help but feel inspired and blessed. I'm sure that you will too.

Thanks for stopping by,
JD

Ah, that tongue!

2010-11-30T09:44:00.000-08:00

It's almost bed time. The girls are fast asleep. I tip toe over to their beds for one last g'night kiss. And then I see it - the tip of AngelicA's tongue is sticking out, one of those common things in kids with Down Syndrome. Very gently, I put it back into her mouth and usually at this point she retracts it. It makes me smile - that little tongue. In fact, I quite love the way it sticks out when our babies laugh or flash that impish grin.
It's another matter that I am not so happy when every therapist that we see invariably asks me if she always keeps her mouth open and sticks her tongue out. She doesn't. At home, she usually keeps her mouth closed but when we're out, her mouth is mostly open. It's probably because she is distracted and so is not conscious of it.

Each of her therapists have given me a few suggestions to address the protruding tongue. Her speech therapist suggested, among other things, that I should put my thumb into her mouth and press down on her tongue. I think I was too naive, or rather too foolish, to think that a toddler will be very sweet and open her mouth and let her mama fiddle around. AngelicA didn't appreciate it one bit. In a fraction of a second, she clamped down her razor sharp new teeth on my finger and wouldn't let go. The memory still makes me wince.

Anyway, now that she is a little older she understands when we ask her to close her mouth and promptly closes it or if we just remind her about her tongue and she will push it in with her little fingers just as we do.

There are few resources on the net to address this protruding tongue and here's a great article which has loads of exercises to help tone the tongue - Tongue exercises. I will try some of these with Angel. Until I read this, the only exercise I would get Amy to do is by making her funny faces. I would stick my tongue out and then she would do the same. Then I would wag my tongue from side to side and then she would copy me. But now, I'm glad I have a few more exercises for her.

The other thing we do is we give her foods that she needs to lick - like Nutella, honey or chocolate syrup. This is something that her therapist suggested but we haven't been doing it too often.

I used to massage her mouth with a Nuk brush, dipped alternately in the juice of a lemon and some honey. Angel hated it so I stopped.

One more suggestion from the therapist that I need to work on immediately is using a Jiggler for oro-motor stimulation. I had used it when Angel was very young and it was quite effective in reducing her drooling. I guess it might improve overall sensation and tone in and around her mouth.

It's just been a few weeks since she has figured out how to drink with a straw. Her speech therapist says that this should help improve the tone of the tongue muscle. I plan to give her some more viscous drinks - like a smoothie - with a straw. That might be even better.

My little Angel is slowly getting the hang of it and is able to control her tongue movements a little so I guess in time we'll lesser and lesser of her little tongue, except maybe when she gives us that naughty smile. And that I wouldn't want to change.

Thanks for reading,
JD

Helping a preschooler with Down Sydrome keep up

2010-11-30T05:26:00.000-08:00

I have borrowed the title of this post from an article I found with Angel's case papers. I couldn't have asked for more appropriate reading at this point. This article has some great strategies to help our little ones who are in their preschool years.

I tried to locate this article on the net so that I could link to it but I haven't been able to find it so I will quote directly from the article.

The author(s) of the article says that "during the preschool years, children develop a better understanding of the world and extend and expand their ability to act on it. Along with the growth of these cognitive skills, there is a corresponding growth in language. The child can tell her wants and needs and can use language for learning and gaining new information. She uses words to describe (on, big, one, soon) and develops early grammar skills. She uses and answers questions, and follows longer directions. Her speech skills improve and more people can understand her, although she may continue to use sign language along with speech."

The article goes on to say that the child's "play and social skills become more advanced and she begins interacting and playing cooperatively with her peers."

The article elaborates on several teaching strategies (listed below) to help a preschooler with Down Syndrome.

It's important to use multisensory, social and experience-related play and learning activities to teach the child because she is still a sensorimotor learner, which means that she learns by doing and experiencing.

Keep the child actively engaged in learning. Use movement, hands-on learning activities, and concrete learning experiences with frequent changes in the activities to keep her focused and engaged. Teach to the child's strengths and work around her challenges.

Use direct instruction, practice, and review to stabilize the child's skills, then encourage the child's use of these skills every day so that she generalizes them.

Use routines (familiar repeated activities that have definite sequences) to provide repetitive practice and predictability. The repetitive nature of these routines lets the child anticipate what comes next in the sequence and encourages active participation. Examples of daily routines are bath time, getting ready for preschool, feeding the dog, or meal time.

Each learning experience should have a definite beginning and ending with a logical sequence of steps. Break the learning activity into steps and teach one at a time as needed. Reinforce learning at each step

Have a variety of activities to teach the same thing. For example, when teaching the body part "hand," have the child use her hands to wave, give a "high 5", do handprints, or put lotion on.

Give the child a reason to communicate or use the skills and knowledge she has.

Encourage the child to keep trying and to stay with a task or activity until it's completed ("You're doing a good job," "Let's do one more," or "You get a sticker when we're all done.")

Reference and source: For Parents & Professionals: Down Syndrome, Published by LinguiSystems, Inc

Here's some more reading on teaching children with Down Syndrome, more from a schooling perspective.
Mainstreaming in early childhood education: How to help the Down syndrome child
Teaching Tips for children with Down Syndrome

Thanks for reading,

Cognitive development and improving IQ

2010-11-28T05:22:00.000-08:00

What was the first fear that crossed your mind when you learned that your baby has Down Syndrome?

Well, I have a confession to make - for the first few days after AngelicA was born, I couldn't get the R word out of my mind. That's all I could think about, day in and day out. I was very, very worried about my baby's cognitive development. I imagined the worst, mostly because the pediatrician at the hospital painted a very bleak picture of what her (and our) future would be - which included statements like her intelligence will, at best, be comparable to that of an 11 year old. In hindsight, I think I worried excessively and needlessly.

Angel is now a happy and healthy two year old. She is smart, curious and fiercely independent. She insists on feeding and dressing herself. She even puts on her own shoes. How different is that from a regular two year old? She manages to navigate a reasonably complex playground set up and can climb up a 10 feet tall slide all by herself. She is an amazing dancer and is on the floor the minute the music starts to play. She loves to read and she loves to learn. One of my closest friends, Freeda, never tires of telling me that she has yet to come across a two year old who is as much into books as my little Angel is.

We have no clue about her IQ and we have come to realize that it doesn't really matter. AngelicA's IQ will probably not be the sole determinant of her future well-being or happiness. Of course that doesn't mean we are going to sit back and just let life take its course. We do our bit toward enhancing her cognitive development. We try to provide a stimulating environment at home, we expose her to new things/situations/places and people on a regularly basis. We try to stretch her and challenge her, and we keep our expectations high.

Step back everyone. I can handle this

As AngelicA grows, I wonder if there's anything that we can do to further enhance her cognitive development. And I don't mean giving her any drugs. There's enough evidence to show that doing some simple things can go a long way. Here are some:

Play - In our pursuit, it seems like we completely underestimated the importance of play. Play is important to healthy brain development, says this article, emphasising that play allows children to use their creativity while developingtheir imagination, dexterity, and physical, cognitive, and emotionalstrength. "It is through play that children at a very early age engageand interact in the world around them. Play allows childrento create and explore a world they can master... As they mastertheir world, play helps children develop new competencies thatlead to enhanced confidence and the resiliency they will needto face future challenges," say the authors of the article .

Music - Some studies (see here and here) indicate that music training can also improve cognitive development in kids.

Dance - Here is an article which suggests that dance may be helpful for children with special needs.

I will definitely consider music training at some point because Angel loves music. Any impact on her cognitive function as a result of it will only be an added bonus.

Here's some additional reading on the subject:
How to Improve Your Child's IQ: Learning the Basics
Exciting Advances in Down Syndrome Cognitive Research

Do you have any thoughts or suggestions on this subject? Please send your comments to downsyndromeparenting@gmail.com. I would love to hear from you.

Thanks for reading,
JD

The comparison trap

2010-11-23T02:58:00.000-08:00

One of the toughest aspects of being a special needs parent is avoiding the comparison trap. If you’re a parent of a kid with special needs, you must have experienced this at some point.

This competition to figure out whose baby is the smartest/ prettiest/ most perfect…hit me real hard one day when I was waiting outside AngelicA's play group class. A group of moms were busy comparing notes on their amazing kids – one of them was telling the rest about how her two year old can recite six nursery rhymes and can identify so many colors and can count to some number… The others chipped in with their own list of feats on what their kids could do. And I just stood there thinking about the fact that my little Angel couldn’t do most of the things that these parents were bragging about. For a few seconds, all the positivity I felt about being a special needs parents was washed away by a twinge of sadness. As expected, my baby was sort of lagging behind the rest and kinda fell short of this 'ideal' that these parents were talking of. Then I reminded myself of the wonderful blessing that she is and I was OK.

It did strike me, though, that dealing with such situations can be even more tough for some special needs parents. Like this mom I met a few weeks ago when I was waiting to see the endocrinologist about Angel's thyroid condition. My little Angel was busy running along an empty corridor and this mom was watching her quite intently. It was then that I realized that the lady’s baby too had Down Syndrome. A little later she came up to me and asked me how old Angel was and at what age did she start walking. I told her that Angel was walking independently by the time she was 18 months old. “My baby is 18 months old and she isn’t walking yet,” she said, her voice quivering and tears running down her cheeks. My heart hit the floor with a sickening thud. And I could feel the tears prick my eyes. My mind searched for the appropriate thing to say but all the words chocked in my throat. So I just reached out and held her hand. And when I did find my voice, I did the only thing I could - I assured her that her baby would do fine and that all would be well.

We are not above comparisons. As a special needs parent, I feel that I am even more vulnerable to making comparisons even though I am all too aware of the futility of it. So what do I do when that insidious comparison bug creeps up to me? Here’s a short list of ideas to stave off the blues.

Look at the bright side. I try (really hard, sometimes) and focus on what makes my journey worthwhile and on all the wonderful things about my baby. It usually works for me.

Remind yourself that everyone has issues. I have yet to come across a person who never ever had anything to worry about. Just reminding myself that other people have stuff to deal with too sometimes puts my own concerns in perspective.

Build a circle of compassionate parent-friends. They will be not just your support system but will also provide you an outlet to vent your feelings without being judgmental.

While on the subject of comparing, here’s an interesting article by Dr Joanne Stern. It’s written for moms, not specifically special needs parents. But it makes some good and relevant points and is worth the read. You might just find something in it for you.

Thanks for reading,
JD

Speech and language development

2010-11-11T04:47:00.000-08:00

When AngelicA was just a few months old, my sister gave me one of the Chicken Soup books which had a story of a couple and their special needs child. I still remember one particularly poignant part - At the first meeting with a therapist, the parents tell the therapist that all they want is for their child to say 'I Love You' to them.

At the end of the story, my sister had scribbled - Don't worry, Angel will say ‘I Love You’. I guess my sister knew - as only a sister can - that I was quite concerned about the speech delay associated with Down Syndrome. I would wonder when she would say her first word. I hoped that she wouldn't take too long to speak. You know how it is, right?

So over the past few months, I’ve been trying to do a little more than her speech therapist has suggested. While I do stuff with Angel through the day, we reserve one hour every morning for some intense reading, talking and singing. Angel loves songs with animal sounds – Old MacDonald is her favorite – so I do the singing and she fills in the animal sounds. We also do a lot of action songs and games. She really enjoys it and I think all these sessions have helped her language development. Even her therapist is amazed at the progress she has made. Though she still babbles most of the time, she has started saying a few words. And just before her second birthday, she surprised us – she scrunched up her little face up and wrinkled her little nose as she struggled to mouth the words and then slowly but surely she said “Appy Birthday” and clapped for herself. It was just too cute J

Since language development is one of those major developmental concerns for our babies, I've been looking for some speech and language development resources on the net and here are some of them.

This page on the National Down Sydrome Congress site is a must read for all parents. It provides links to several useful articles by some of the leading experts on speech and language development.

If your baby is really young, this article provides a good overview on speech difficulties and milestones for speech. And here’s another comprehensive article on Speech and Language Development in Infants and Young Children.

Speech pathologist Robert Kurtz has some really great ideas on creating a language rich environment and some of them are listed below:

· Turn off the TV

· Talk, talk, talk (slowly and simply)

· Sing and rhyme (if you can't sing, rap)

· Get out the toys and play, but ditch the batteries

· "Talk" some books to your child

· Use focused stimulation

· Learn (and use) some baby signs

And here are some more sites that have loads of ideas and even games that you could use at home:
Everyday household activities for encouraging language development

Speech Therapy Activities

Mommy Speech Therapy

Speech-Language therapy resources and games that work

And finally you can find some more links here.

Thanks for reading,

A very special birthday

2010-10-07T03:58:00.000-07:00

Recently, I came across this post about birthday parties that tugged at my heart strings. Written by Terri Mauro, a mom who has two children with special needs, it gives a realistic ‘special needs’ parent's perspective on birthday parties. All of us special needs parents know that birthday parties can be a challenge.

My own little angel turned 2 last weekend. For many weeks before her birthday, I debated if we should have a kids’ party for her. To be honest, I was apprehensive. I’m always looking for those little signs that show that she is accepted and liked by other kids and I was anxious about a low turnout. I had almost decided to play it safe and have a nice but low key party with only the immediate family. But somewhere deep down inside, we wanted to do something bigger for our little girl. We wanted to celebrate her and her beautiful life and we wanted to share our joy with others too. We also felt that this was a great opportunity for people to get to know her for who she is.

After a bit of going back and forth, we decided that we would have a nice big birthday bash. Once we made up our minds there was no turning back. All our efforts were then focused on how to make it the best birthday party ever without breaking the bank…okay we did stretch our budget but it was totally worth it.

So here’s what we did:

First, we made a guest list. The list included our extended family and some close friends. We also made sure there would be enough kids at the party so it felt like a kids’ party too.

Second, we tried to include activities that would engage kids and adults and make the party fun.

Cousins Alyssa and Naomi at the birthday party

Since her birthday was on a Sunday, we decided to throw a birthday brunch at our local Holiday Inn. We had about 70 guests and it was perrrrfect beyond my imagination. The hotel had set up a separate Kiddies Zone, where they had a face painter, a magician, a mascot and some activities to entertain the kids. They also had play station set up for the older kids and there was loads of stuff to keep them busy and happy for hours. Without a doubt, the kids had a blast.

The adults had a great time too. There was live music and the food was really good, with many live counters to choose from. The best part was our birthday girl who totally enjoyed herself. She danced with her uncles, gave warm hugs and kisses to whoever held her and basically had everyone falling in love with her. And as everyone gathered around to sing Happy Birthday, I felt tears of joy up in my eyes. I could feel the love. Yes, AngelicA is a very special baby and what better than a very special party to celebrate her. It was a happy, happy day and I am so looking forward to doing it all over again next year. In fact, I plan to invite some of the neighborhood kids as well the next time around.

Here are some thoughts and suggestions to help you host a great birthday party for your child:

Plan well in advance. Give yourself a couple of months to plan for the party. This will give you enough time to consider several options on scale of the party, location, type of party and themes. It’s best to have a theme party for kids – kids love themes and will probably be even more keen to attend. It also gives you an opportunity to try out different ideas and help you put together a really great party.
Be as creative as possible. Try to bring some out of the box thinking to every aspect of the party. The more creative you get with your theme, the greater the chance of kids turning up at the party and having a great time. Make interesting invites. Plan some fun games. Be creative in the décor, have a uniquely designed cake, have snacks that kids love. The idea is to make the party as fun as possible so that kids look forward to coming over again.
Have a balanced guest list of familiar people and some new faces. While putting together your guest list make sure that that at least 70 percent know your child well. That way you can be sure that some people will surely turn up. The other advantage is that when kids who are not familiar with your child see him or her being treated like any other kid, they too might get more comfortable and start accepting your child as an equal.
Include some ice-breaker games. This will to get the kids to mingle and talk to each other. Treasure hunts work well.
Give your child an important role. For instance, you could designate your child to give away all the prizes. The more opportunities the child has to interact with kids individually, the better.
And last, but most importantly, have fun

Here’s one post by a special needs moms that I found quite interesting. It’s full of some great ideas that I will use in the future.

Birthday Parties for Kids with Special Needs: A Special Way to Socialize

Thanks for reading,
JD

Our first occupational therapy session

2010-02-28T02:43:00.000-08:00

Last week I made an appointment with an occupational therapist because I wanted to get AngelicA assessed on her fine motor skills development and areas we need to work on. Besides, the developmental pediatrician who had done her developmental assessment had suggested that we start Angel on occupational therapy. So yesterday, we made the short trip to the early intervention center to meet the occupational therapist.

Initially, when we got there Angel started fretting a bit and was clinging to me. She does this quite often now. But once the therapist gave her some beads, blocks and other stuff to play with, she got comfortable and played while we chatted about her.

He told me to show her how to string some beads and Angel caught on quite quickly. After a while, he told her to put the blocks back into the box and she did as she was told. He told her to stack some cups and she did that too. But after a bit Angel was distracted and wanted to play with Elle, somehow whatever her sister's doing always seems more interesting so she scampered over to Ellie.

All the while, this therapist kept observing her and making notes. I wasn't sure what he was making of it. Until all of a sudden he asked me - Is she always like this? And I was a bit puzzled. Like this? Excuse me, like what? And then he asked me again, is she always hyperactive? I just didn't get it. Among all the kids in our extended family, Angel is the most placid and amiable. Yes, she has started jumping around like a little monkey now that she can stand without support and climb pretty well, but don't all children do that? I told him so but he still insisted that OT will help us to address her hyperactivity!!! Can you believe that? So that remained a moot point in the course of the assessment.

At the end of the assessment, he said that he doesn't see too many issues with her but because she has 'a condition' it would help to get her started on OT so that she is able to reach her milestones more or less in line with typical kids. He suggested that we do some of the exercises at home with her. I had already started getting her to do a few things like coloring with crayons and playing with beads. I've been showing Angel how to unzip and zip up the zippers on cushions to help her develop a more mature pincer grasp. And sometimes she pulls down the cushions so she could go at it herself. Now I'm looking for some peg boards that could possibly be as useful.

I've picked up some suggestions from About Down Syndrome and listed them here.

- Picking up small items (i.e. uncooked macaroni, cheerios, etc. and putting in cups or bowls.)Always, always stay with your child when doing this and make sure he does not put these items into his mouth.
- Putting together snap lock beads
- Manipulating puzzle pieces ( the kind with the pegs for picking up the pieces)
- Brushing or combing his hair (or yours, but beware, he might get overzealous!)
- You can give your child a crayon and piece of paper and let him go at it (make sure to supervise this activity)
- Alternatively, a magna doodle might do the trick
- Peg boards

Another interesting article on Bright Hub recommends that toddlers should be encouraged to use the index finger and grasp tiny objects as they engage in the following daily activities:
- Point during finger play songs
- “Paint” with the index finger in whip cream
- Put small pieces of crackers inside large container openings
- Stack blocks
- Put large pegs in or out of a board

The article goes on to say that two-year-old children are ready to practice the following fine-motor activities that will develop these skills:
· Stringing large beads
· Putting objects inside containers/ dumping them out
· Opening food wrappers
· Opening and closing lids such as the top of a band-aid box

Pic source: Brighthub.com

Suggested activities for three and four year old children include:
· Opening and closing squeeze clothespins
· Using toy pliers to move around objects
· Opening or closing screw caps
· Winding up toys

I would love to hear from you about all that you have been doing at home to develop your child's fine motor skills. Please do write in to littlemommysunshine@gmail.com.

Thanks for reading,
JD

A love story

2010-02-19T22:57:00.000-08:00

Elle is one lucky girl. When her baby sister sees her, all she wants to do is show her how much she loves her - with countless wet, slobbery smoochies. And Elle is alway happy to oblige, allowing AngelicA to crawl all over her as she puckers her little mouth over Elle's face. The two are crazy about each other.

It's obvious that Ellie has a special place in Angel's life. Her face lights up when she sees her big sister. They giggle and laugh at jokes that only they understand. Playtime is the most fun when they are together. Their happiest moments are when they're holding each other and rolling all over their cushion and pillow mountains and castles or splashing around in their baby pool or throwing their soft toys at each other, laughing, gurgling and more laughing.

The other night as we were getting the kids ready for bed, Ellie did the sweetest thing for her baby sister who was already asleep - she pulled out the sheets from the closet, picked out her favorite glow-in-the-dark sheet and covered AngelicA with it carefully. It was one of the many little things that Elle does for her sister each day but I couldn't help feeling all fuzzy about what she had just done - parting with one of her favorite things is a big deal for a 3 year old, right?

But with Elle, it's different. She behaves like she is the mommy around her little sister. She's the one who runs to Angel when she wakes up in the morning and shouts out a cheery "Good morning sunshine." She's the one who rushes to get the tissues to wipe Angel's nose when she has a cold, tries to read to her, wipes her tears when she cries and comforts Angel when she hurts herself. She feeds her, tries to bathe her and even helps to clean her up though we insist that some of the chores are exclusively mommy's or daddy's.

Elle and Angel are usually inseparable. Elle even tags along for Angel's physiotherapy sessions and visits to the doctors. It helps sometimes, the two end up playing and Angel hardly notices what the therapist or doctor is doing to her. Even the therapists agree that we get more done when the two girls are together.

There are times, though, when Angel's visits to the doctors or therapists don't go very well; like when we need to draw a blood sample for her routine blood tests, or when the physiotherapist makes her walk and she doesn't want to. Those are the times when Angel bursts into tears and her little body quivers as she sobs and it is at those moments that Elle's love for her sister becomes most apparent. Her eyes become wide with fear and I can see she is torn between consoling her sister and crying herself.

Elle doesn't know yet that Angel is a little different from her though once in a while she says that her sister looks like "summ'un else." I sometimes wonder how it will go - this whole business of telling her about Down Syndrome, I wonder how she will take it, what she will make of it.

I've been reading up on siblings of kids with Down Syndrome and I came across some interesting stories (find them here and here) and some useful articles (find them here and here) and a video at the end of this post all of which are quite encouraging. And I am hopeful that as Elle grows she will see she hasn't been shortchanged by fate; that life is beautiful, even with its warts. And that when you have the love of an Angel, you might need little else.

Thanks for reading,
JD

Up for reading

2010-02-17T08:51:00.000-08:00

Of late, my little AngelicA seems to have made the connect between books and reading. I just have to say or sign read and she makes a dash to perch herself on my lap and then she waits for me to start reading. Sometimes she pulls out her books from the shelf, picks one of them up and then reads - turning the pages and mumbling to herself. It is such a cute sight.

Part of her interest probably stems from the fact that her sister loves books and enjoys being read to. Elle was into books from a very young age and at one point she would only eat if I would read to her while I was feeding her. Her favorites are Spot, a couple of the Fisher Price early reader books and some Enid Blytons. And Angel has always been a part of all the reading that we would do with Elle.

I guess this is something that all parents do. And now there is increasing evidence that for kids with Down Syndrome, the benefits of reading are significant enough to warrant concerted efforts to build this essential skill.

I recently came across this interesting article - Teaching reading skills to children with Down Syndrome on Up-for-Reading.org - which has some interesting ideas on how to teach our kids to read. Here's what the article says on the benefits of teaching them reading:

Reading will help children with Down syndrome to develop vocabulary and grammar knowledge and will give added practice, and therefore improve spoken language skills. Reading practice will also help to develop working memory skills. The ability to read and write facilitates easier access to general knowledge and the school curriculum and it supports the skills necessary for problem solving and thinking strategies.

There is also evidence for the beneficial effect of reading on speech and language skills. Case study records suggest that early reading activities encourage progress to longer utterances and improved grammar in speech. They also suggest that reading improves articulation and speech intelligibility (the ability to be understood by the listener).

Picture source: Up-for-reading.org

Reading also helps in social development. The best part about reading is that it is fun. In one of my earlier posts (find it here)I had mentioned some of the stuff we were doing to support Angel's language development through early reading along with some ideas and links to resources for early reading.

I cannot emphasize enough how much of difference our efforts have made. Earlier today, I was reading one of Angel's books to her, I pointed to the word 'eat' and asked her "What's this?" And she signed eat, putting her little fingers to her mouth. It was the best thing that happened today - our little Eureka moment :)

Thanks for reading,
JD

The things I love about my new life

2010-02-13T08:58:00.000-08:00

AngelicA's birth was the beginning of a new phase of my life. I'd go even as far as saying it's a new life altogether. Initially I didn't want any part of it. And it was at this time that my sister sent me the link to About Down Syndrome, a site put up by Caroline whose incredibly adorable son Sam also has Down Syndrome. I’m glad I checked the site. It was like a breath of fresh air after all the depressing medical stuff I was reading. For once, I felt a little hopeful about the future.

I mailed Carrie to tell her that and she mailed me a very reassuring reply. This is what she said:

I am glad you are able to find some hope. As your baby grows, you will realize she is not so different from others. She will light up your world. Sam has given us so much joy. We marvel at every little thing he accomplishes. He is five now and going to school every day. He loves it and does very well. Though he is not learning at the same rate as his non-Down syndrome classmates, he is learning, and that is all that matters.

I wish you much joy and happiness with your child. Keep looking at the bright side, but know that it is normal to grieve for the baby you thought you were going to have. You will learn to adjust your hopes and dreams to this child, and all will be well.

I was touched by her thoughtfulness. More importantly, reading Carrie's site was a turning point in our journey because I suddenly stumbled on to a whole world of mommy blogs and sites. And what a wonderful world it is.

I was comforted by the stories of all these wonderful families and amazed at the kind, caring and strong women who wrote them. These women, I could see, are all sisters of the heart who truly care for each other. They welcome a new member with a warm embrace and the nicest of words. They are always there for you and for your baby any time, any day, they are happy to give you advice, share their experiences, pray for you, cheer your baby on, lend their shoulder to cry on, and do every thing that they possibly can in spirit without expecting anything in return. I am now a part of this 'privileged' club of moms of kids with Down Syndrome and I feel truly blessed.

Click Here For Images &
Counting My Blessings Pictures - Pictures

Over the past many months, I have often pondered on the other blessings that my new life has brought me, all the things that I now love. And so here it is, in no particular order, all the things that make my heart sing:

- I have found strength and courage that I never knew I had. Suddenly, I feel proud of myself for having got this far without breaking down every other day.

- I've figured out what is truly important in my life. Until Angel was born, my priorities were slightly different. Writing a great article, being appreciated for my work by my editors and readers...those were the things that would give me a high. Now, I get that sense of euphoria when I see my baby finally pull herself up to a standing position after a zillion attempts to get it right. And you know what, I'm happier now just spending time with my girls, taking them to the park, reading to them and singing silly songs and dancing with them. The headlines can wait.

- I love that my baby is still a baby who is just figuring out how to walk on her own and not a spunky toddler who's all over the place with me in hot pursuit; not that there's anything wrong with that, but if you're a parent of a child with Down Syndrome, you'll know just what I mean.

- I have found my cause - I have always been keen on supporting a cause but could never do much because I found too many of them tugging at my heartstrings. So even before I could roll up my sleeves, I was overwhelmed. Now, because of my baby with special needs, I've finally decided that this is the cause I will focus my energies on. Though I haven't got started yet, I have a plan and a purpose. I believe that the means will follow.

If you have a baby with special needs you might agree that you have received the gift of perspective with the arrival of this child. Would love to hear about what else you like about your life now. Please do write in at littlemommysunshine@gmail.com.

Thanks for reading,
JD

Poetry in motion

2010-02-11T08:36:00.000-08:00

We've finally reached a long awaited milestone - AngelicA took her first few independent steps a few days ago. We knew that she getting there sometime soon, she has been standing without support for a few weeks now and then suddenly out of the blue about a week ago she took one tiny step - a wobbly, shaky one - then another and a third before lunging for the sofa near her. She was so pleased with herself, she was laughing her head off. Since then she's been trying to do many encores sometimes successfully and sometimes not quite.

I haven't got a video yet but here are a few pictures of her trying to stand:

Ready?

All set?

And up she goes...

Way to go girl. You did well. You can take a bow.

Did we get plain lucky with Angel? We were led to believe that we would have to wait a long time to see her achieve this milestone. May be we did get lucky or may be it's just the little things we did that helped her get there sooner.

When Angel was about six months old, I read some articles about how treadmill training helped babies with Down Syndrome walk three to four months earlier than the usual 24 to 28 months. Initially, we decided we would invest in a treadmill but finally we didn't end up buying one because we didn't find any that suited our needs. So instead of putting her on a treadmill we held her up and moved her legs to mimic the walking movement. We tried to do this for a couple of minutes everyday, in addition to her regular physiotherapy, and when she started pulling herself up to standing position with support, we started making her walk with the help of a walker.

And here we are now, applauding her as she tries to take one step after another, slowly and a little gingerly. She's still unsure and her gait is a little awkward. But for me, it's poetry in motion.

Thanks for reading,
JD

Sign on...

2010-01-26T08:10:00.000-08:00

If I were to list some of my favorite baby moments, watching a baby sign would be somewhere at the top. It just makes me go "Aaaaawww, that is soooo sweet". And we're having plenty of those moments these days with Angel's expanding 'vocabulary'.

We started teaching Angel to sign a couple of weeks ago after I read some articles that said that teaching a baby to sign not only helps them to have a meaningful interaction with other people but also helps to increase their IQ. Because babies with Down Syndrome could have some speech delay, teaching them sign language could go a long way in broadening their horizon.

Though our initial efforts weren't consistent, she picked up some of the signs pretty quickly. She has already learned to sign 'bath', 'eat', 'no', 'stop' and 'hello'. The first thing she learned was 'bath'. So everytime we would take her to the bathroom, she would sign 'bath', sometimes moving her little hands over her tummy really fast just so we got the message :) Oh yes, this baby loves her bath time.

The developmental pediatrician who saw Angel last month was surprised that we were teaching Angel to sign - all credit to the various sites and blogs I read :) Anyway, she recommended the book 'Baby Signs' which I didn't find at any book store here so will order it on Amazon. Until then I'm relying on the internet for all the information I need. There are some very interesting sites out there and one of them called My Smart Hands, which has been developed by an enterprising mom, is quite good.

The speech therapist (who we met later) reiterated the importance of signing and suggested that we use gestures for every word. We have plenty of scope to get creative and have fun. It's like we're doing action play all day. Even Princess has caught on :)

If you are a new parent and would like to teach your baby to sign, here is a great video that could help you get started:

There's another good video that you can find here.

Teaching Angel to sign has been a high point for us. Yes, my baby can now 'talk' - in her own sweet way. And I'm loving it.

Thanks for reading,
JD

Baby talk

2010-01-17T05:17:00.000-08:00

We've finally started Angel on speech therapy. Yesterday, we met a therapist who was recommended to us by the pediatrician at Ummeed. And I'm happy to say that it was a nice, positive experience.

I was initially apprehensive that we were probably very late in starting Angel on speech therapy considering she is already 15 months old. Thankfully, Palak (the speech therapist) reassured me that it was fine to start now.

She did an assessment of Angel's speech even as the two of them carried on a conversation. It was great to watch them both talking. I could see Angel was in a happy place, what with the new toys and someone actually 'understanding' what she was saying. That itself was a big learning for me.

Palak drew up an therapy action plan for us to work on with a two month timeline. What I really liked was that all of it can be done easily at home. The key actions that we have to incorporate in our daily routine are:
- We have to use short sentences, stretch words and use a lot of gestures while speaking with Angel.
- She has to learn to sign 'eat' and 'finished'.
- We have to incorporate doll play into our routine. We have to take the doll everywhere and make the doll do whatever Angel is doing.
- For oro-motor stimulation, Palak recommended we buy a set of training toothbrushes and use the beginner brush - which looks more like mini paddle - and roll it around her mouth five times each day. The brush has to be dipped alternately in honey and lemon juice and we need to do five repetitions each time.
- We have to record Angel's vocalizations and play it back to her.
- We have to imitate her vocalizations and do vocal play with her.
- We also have to talk for her. So when she says boo....we say boo...book? Do you want your book?
- Within the next two months Angel must be able to recognize 20 commonly used objects.
- We need to buy her some cause-effect toys. If you'd like to pick up such toys make sure you have the time to look around all the stuff before you pick what will really benefit your child.
- We have read the book 'The new language of toys'
- Palak also suggested that we play a DVD on signing for her. It's called - My baby can sign. We haven't managed to locate this and the book yet but as soon as I get them, I'll add the details to this post.

I left Palak's clinic happy and with a sense of having achieved a milestone even though it was just the first step. I guess you, dear parent, will know what I'm talking about.

We'll keep you posted on how the talk therapy is going with us.

Thanks for reading,
JD

Seeking Pollyanna in our education system

2010-01-08T05:50:00.000-08:00

Ms Elle is all set to enter the hallowed portals of The Big School. The key question for us is "Which one should she go to?" Early on, one of my main criteria for shortlisting a school for Princess was that it should be one where Angel could also go.

As someone who has written on education for many years, especially on the changing landscape of education and schooling across the country, I was somewhat hopeful that more educational institutions in India might have made progress on the inclusion front.

And recently, I came across this interesting article in the Hindustan Times which got my hopes up even more. This story is about institutes that provide a welcome alternative to conventional schools. These are just the kind of schools where Angel can truly learn and any one of them schools would be perfect for her, I thought.

Unfortunately, what followed is not what I hoped would happen. I chose two city schools from the ones listed in the story and called them only to be told that they don't take children with special needs because they are not equipped to address their needs. It would be an understatement to say I was disappointed with the response. Dismayed is more like it.

As everyone living in Mumbai knows, this city has a dearth of quality schools because of which even average schools have a long list of applicants. I'm pretty much sure that the situation is no different in other parts of the country. It's no surprise then that many schools, especially those that are considered top schools, shun children with special needs.

I have not asked any particular school the reasons for rejecting these kids, but after reading up on the subject, here's what I have arrived at - Schools fear that taking in children with special needs will put additional strain on their already overstretched staff and resources. They also fear that when these students get to the point of appearing for a public examination, they might not succeed impacting the overall performance (and therefore image) of the school.

Ironically, much of the research on inclusion (see here) has found out that having an equal opportunities policy has a positive impact on the school and the community. Special needs students benefit from being considered as equal members of a community and other students benefit by learning to be empathetic. Fr Agnel School, Vashi, Navi Mumbai, is among the few schools here that understand this, as indicated in this story in the Hindustan Times.

I've would like to make a concerted effort to find good regular schools in India that even children with special needs can aspire to go to. And I hope to list them here as and when I get any information.

Here are a couple to start with:
Billabong High International Schools, which has an explicit inclusion policy.
Fr Agnel School, Vashi, Navi Mumbai

If you know of any inclusive schools, please do let me know and I'll add them to the list. My goal is to have a comprehensive list of such schools from across the country. After all, our kids deserve quality education too.

Thanks for reading,
JD

Perfect gifts

2010-01-06T22:08:00.000-08:00

My sister has a knack for buying my girls the most appropriate gifts. Angel's very first Christmas gift given to her by aunt T was a book with animal pictures and different textures for their fur/ hide/ skin. Since then, she's picked up other multi-sensory books ("Hugs" is a big favorite), developmental toys and loads of other stuff.

The other gift that the girls absolutely love is a play tent given to them by uncle Godwin. Angel loves to play peek-a-boo and crawl in and out of the tent's many doors and windows. This is one of their favorite play things and it really makes me happy to see them spend some of their best moments in there.

My friend Gauri had got Princess an interesting developmental toy that helps to improve hand-eye co-ordination and I find it very useful for Angel. It's a box with a couple of colored balls and a wooden hammer that you use to knock the balls through the holes in the box. Angel's getting pretty good at hitting the balls and I'm sure it's doing her a lot of good.

Another interesting gift was given by Santa at our local christmas party. It's a ball with the outline of different shapes cut into its surface and it came with a whole bunch of corresponding shapes. Angel loves pushing the shapes through the various holes and clapping for herself when she manages to do it. It's a very basic toy but I'd rate it higher than some of the other toys made by the big brands.

One of the best gifts that Angel has got is from my sister and it is the entire set of Brainy Baby DVDs. The girls love it. Not a day goes by without them watching at least one of these DVDs. They are excellent, full of colorful visuals, catchy music and fun learning. Ok, I confess I'm hooked onto them too.

Here's a peek into one of the videos available on YouTube:

Of course, the very best gift my little girls receive is the gift of love :) What's the best gift that your child has received? Please do mail me at littlemommysunshine@gmail.com with your stories. I would love to hear from you.

Thanks for reading,
JD

Learning, with love

2010-01-05T08:43:00.000-08:00

A few weeks ago, I read Colleen Bailey's story (click on Education in the list of contents and then click on the last piece - Inclusion - under education). It's one of those stories that makes you want to stand up and applaud the child, his parents, the whole family. They must have worked very hard to make Colleen the star that he is.

Wouldn't we all would love for our kids with DS to have such great stories? I know I would be thrilled for Angel (and all our kids). So our efforts to teach her to read started quite early. When she was about seven months old, I came across this wonderful website - Love and Learning - which is about a reading and language development program meant for children with special needs. The program has been developed by a couple - Joe and Susan Kotlinski - who have had remarkable success in helping their daughter (born with Down syndrome) acquire reading skills. They now offer the program to other children with special needs. The stories on this site are so heart-warming and encouraging, I decided that I must get Angel started on this program.

I got in touch with Joe and Susan and ordered the first two kits. Joe was very helpful and gave us some good advice on how to use the program. Each kit comes with books, a DVD, a computer program and an audio CD. As soon as we got the kits, we started reading the books to Angel. She watches the DVD everyday and loves to watch the animated letters and words on my laptop, whenever we run the computer program for her. She even knows that she has to press a key to make it go to the next word :)

Though we are not able to do much everyday, we still try to do a little and are delighted to find that she has begun to recognize words. She's tried to say apple when I showed her the word apple a couple of times, and she even tried to say bus and car.

Recently, I found another excellent resource on Downsed International. It's called See and Learn and you can find it here. This site has an entire range of downloadable material that is easy to put together and use. It took me less than an hour to get the first lot of the material ready and we were ready to go. The material is customizable and it provides a good template for you to create your own flash cards. I cut pictures of myself and Angel's daddy to make the mom and dad flash cards. Interesting and fun.

And now to the crux. We are at a point where Angel is easily distracted and would prefer chewing on the material rather than looking at it so I'm not sure how much of what I do is being absorbed but I still read it to her everyday. I'd like to believe that she will be reading soon and I can add her story to all the other beautiful and inspiring ones out there. I would love to hear about your efforts and your child's progress. I'm sure he or she is doing great. Please do write in with your stories.

Thanks for reading,
JD

You've come a long way baby!

2010-01-04T06:25:00.000-08:00

Angel does the cutest things these days. She loves to pick up any phone that she finds near her, hold it to her ear and yell out "Yeah" :) She loves to explore the world around her, cruising along furniture and walls quite comfortably. And she's also very quick - she climbs beds and sofas in seconds. And boy does it make me happy. Especially since some experts had us believe that we would have to wait a long time before she achieved these milestones. Yet at one, she's showing just minimal delays much to everyone's surprise.
We recently got Angel's developmental assessment done at Umeed, an organization that helps children with developmental disabilities. This could easily be one of the most important things we have done in the recent past. It not only gave us an idea of where Angel is, it also helped to identify areas that we need to work on.
Angel started on early intervention (only physiotherapy) when she was two months old but we had never got a developmental assessment done and we were not even aware about it. Our serendipitous discovery of Umeed led to us making an appointment for the assessment. I know for a fact that many children here (in India) have no access to such facilities so if you are a parent of a child with special needs and you live in India I would suggest that you find out options through your pediatrician to determine your child's progress. This would be very helpful in designing a development program for your child.
Coming back to Angel, the developmental pediatrician told us that she's showing good potential in many areas. We do have areas that need working on - the main ones are speech and language. So that's going to be key over the next few months. I'll be making an appointment shortly with a speech therapist who offers an at-home programme. In the meantime, I'm trying to implement some of the recommendations made by the developmental pediatrician at Umeed. Will keep you posted on how this goes.

Thanks for reading,
JD

Counting my blessings in 2009

2009-12-31T01:40:00.000-08:00

It's New Year's eve and what better time than this to take stock. It's been a wonderful year and I have much to be thankful for - from the mundane to the truly extraordinary.

Right at the top of my list is Angel's miracle life. Who would have guessed that this baby with Down Syndrome would surprise all of us? A year ago at her birth, the doctors' prognosis wasn't exactly heartening. But here we are with a baby who is one smart cookie. No, no we are not in denial nor are we deluded. Angel has really accomplished a lot in the first year of her life; much more than anyone expected and I am very grateful for that.

I'm also thankful that I could take a break from my career to spend with my young kids. Having missed much of the action earlier, I am now savouring every little moment with my little ones. Bliss!

The other bright spot over the past year was discovering all the wonderful mommy blogs that kept my spirits up at a time when we were still coming to terms with having a baby with Down Syndrome. I love the honesty and sincerety that shows through all the mommy writings, especially those by moms of children with special needs. They have been a comfort to me on some of my darkest days. Thank you Moms and may God bless you all.

Some of the happiest memories of the year are those of time spent with the family - trips across the country and holidays at home. Makes me feel all warm and fuzzy :)

And finally I am thankful for my family - my two wonderful girls (make that four girls - including my two amazing nieces), my husband, my sister (should be somewhere on top of the list of things I'm thankful for), parents and other members - friends, good health and some of the material things that may not make life worthwhile but sure make you happy for a while.

So here's a big thank you to all those who made (and continue to make) my life so wonderful.

I'd love to hear from you about all the things you're thankful for this year.

Love and best wishes for a wonderful 2010,
JD

Angel's birth story

2009-12-12T00:58:00.000-08:00

I've had my share of dark days too. Probably one of the lowest phases of my life are the days following Angel's birth. And here's where our story begins -

Angel arrived at 2:35 am on September 26, 2008 after a very brief labor. And the first thing the doctor in attendance said was – oh, she’s a very cute baby. I peered at the round little head nestled on my tummy and heaved a sigh of relief. For me, it was evidence enough that all was well.

I know it’s not unusual for any mother to fret about how their baby looks, but I was quite desperate for reassurance because for a good part of my pregnancy my gynecologist had expressed concern about the baby. My ultrasound reports had revealed that the baby’s kidneys were distended. The doctor said that there could be a problem but there was a possibility that this was only a transient issue and might resolve itself. Other than that, every test report – including the triple marker – didn’t throw up anything alarming.

So I was elated to see my cherubic little girl. It didn’t even bother me that the pediatrician attending the birth said that the baby must be moved to the neonatal intensive care unit (NICU) even though she was 6 lbs at birth and was apparently healthy. I was just too exhausted from the effort and lack of sleep.

Angel was in the NICU for two days and I didn’t suspect a thing. The pediatrician felt obligated to offer me a reason for the baby’s prolonged ICU stay and said something about the baby not feeding properly. It didn’t occur to me that the explanation being given to me was flimsy. I was only focused on getting back home.

Two days later, when I was alone in my hospital room, my gynecologist dropped in. This part is so clear in my memory as if it happened yesterday. While he was going about his routine examination, he dropped the news. “The pediatrician suspects that the baby might have a genetic condition; she might have Down syndrome,” he said. He held my hand briefly; I felt the warmth of his palm against my skin which had gone dead cold. Then he walked out.

I froze for what seemed like an eternity. Did I really hear right? Did he really say that my baby had Down Syndrome? Was it my baby he was talking about? No, that just wasn’t possible. She looked so normal. Then it hit me with such a violent force I burst into tears. Every part of me ached with a pain that only another parent in a similar situation will understand. The very thing that I had dreaded, the very thing I had tried to avoid by having the baby on the supposedly right side of the 30s had happened to me. I remembered all the conversations I had with friends and family about the increased risk of the baby being born with some genetic condition if we wait too long. And now it had happened to me, of all the people I knew.

I called my husband who was at home with our older baby and told him what the doctor had just said. There was silence at the end of the line and then he said I’m coming back to the hospital right away. Then I called my sister who tried to console me. I realized that they already knew. My stomach churned and I felt sick. A while later, I went to the hospital chapel and prayed – Please God, let it not be. I hope this is all a mistake.

The next few days are a blur, I kept going from extreme fear to grief to envy as I watched all the other families celebrate the arrival of new members. While all the other mothers cooed over their babies as they nursed them in the NICU, I just stared at my baby and felt the tears welling up in my eyes. Many times she would look into my eyes and I found myself falling in love with her. Those were the most beautiful eyes I had ever seen - an iridescent gray with a ring of light colored flecks. She looked like a little doll.

Surely they had got it all wrong. They said she wasn't feeding properly, but from what I could see she was nursing like a champion compared to the other babies that were there and while the other mothers coaxed their babies to nurse, my little one would latch on and go with relative ease (by day 2). They said she was not alert, but she kept me up for a good part of the first night she was out of NICU.

The pediatrician, however, said that he was sure about her having Down Syndrome. Her features were evidence enough, he said. He added that they were only waiting for her karyotyping report which would confirm their diagnosis. He said if the report comes any different we could hit him on the head. I let myself smile for the first time in days. Our family and friends had been praying and I was confident that I would hit the pediatrician on the head, at least figuratively.

Then he gave his prognosis of what he thought her life would be. He said she would, at best, have the intelligence of a 12 year old and would most probably need support throughout her life. His words were cold and blunt. They didn't offer any comfort or promise. Our hearts bled but we held on to the hope that the karyotyping report would say that she was fine.

After we returned home, we continued to storm heaven. The day her karyotyping report was supposed to be ready, the sun didn't shine. It was a dark, gloomy day and it even rained. It was unusual for an October day and in this part of the world October is usually a time when the days are bright. As the day wore on, the sky kept getting darker. It was like a sign. Stop it, I wanted to scream; it's not funny, thinking that God has a wierd sense of humour. And this time I was not amused.

The karyotyping report confirmed our worst fears. The next few days continued to be dark and gloomy. It was as though nature was mourning with us as we grieved and raged about our fate and that of our child. We worried about her future, our future, how this would impact the life of our other child. Our family and friends rallied around us and that helped soften the blow a little bit.

The days crawled and slowly the heaviness in our hearts lifted. As they say, time heals all wounds. And it did ours too though we still worry about what the future has in store for Angel. It’s just over a year since she came into our lives and we have realized that life isn't as bad as we feared. In fact, we are discovering the many joys of raising this baby, who never ceases being loving and cheerful. She is no less of a miracle. She is a delight to our hearts, the wonder of our wonderful life. She is our very own little angel and we are truly blessed to have her.

If you are a new parent with a baby who has been diagnosed with Down Syndrome, I would like you to know that while this may be one of the toughest phases, it will pass. And when you look back, you might even find that your life has been enriched by the arrival of this baby. Congratulations and I wish you, your family and your new baby every happiness.

Thanks for reading,
JD