Ah, that tongue!

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

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,

JD

Cognitive development and improving IQ

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 developing their imagination, dexterity, and physical, cognitive, and emotional strength. "It is through play that children at a very early age engage and interact in the world around them. Play allows children to create and explore a world they can master... As they master their world, play helps children develop new competencies that lead to enhanced confidence and the resiliency they will need to 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

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

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,

JD