Our first occupational therapy session

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

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

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

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

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