27.8.12

One Lovely Blog Award: From Up & Away to Navagate

I recently found a fellow blogger sent me a lovely shout-out. Embarrassingly, I didn't find out about it until over a week later because the internet doesn't like me anymore (I'm having serious challenges getting a reliable connection back in Laos at home now that I'm not in the office. Grrr).

So a warm thanks to Laura at Down Syndrome: Up, Up & Away. Her blog gives me fun learning ideas plus gives me a window into the future with Nava. 

With the award goes the suggestion to share about myself. Seems a little repetitive for a blogger so I'll stick to a snapshot of my day so far in 4 random bullets instead (oooo, I'm a rebel!):
-My 2 month old and my 2 year old both slept through the (short in the case of the newborn) night and my day started at 7am. Sheer indulgence.
-My power cut off at 7:03am. Without power we have no water. End of indulgence.
-I spent the morning showing off Loka to my midwife who is leaving the country. I was blessed to get to have midwife care for the 2nd half of this pregnancy and enjoyed it SOOO much more than OB appointments! I doubt a post-birth visit with my OB would have involved them washing breatmilk poop off my child's bum twice in one visit, for example.
-I've spent the lunch hour in a cafe enjoying the wifi. An ex-boyfriend I haven't seen in 2 years walked in while I was nursing Loka and proceeded to want to catch up, give me hello kisses, and all that sort of thing. One of my more uncomfortable nursing in public moments.
And enough about me...

The award also comes with a suggestion to award it to other bloggers I admire. In true mother-of-newborn fashion I'm going to cut a corner and instead give a shout out to everyone at the International Alliance of Writers for Down syndrome and Down Syndrome Blogs. There's some great writers over there and Loka's only letting me use one hand right now so that's all I got!

The Potty to Panties Project: Toilet Learning here we come


there are tutorials of cute ways to do this but...


We’ve had some big developments around here on a number of fronts. One of them snuck up on us and took us by surprise last week: Nava’s readiness to shed diapers. 

There’s a page on Navagating (yes, just look up a little…oh wait…not if you use  reader…) called Potty Principles. It’s woefully out of date (I’ll fix that soon, promise). On it I explain how Nava has been doing most of her #2 on a little potty since about 10 months. For a year now she’s been in diapers but also using the potty to pee, to the point that we only change her on waking, after a nap, and at bedtime. For months, she has been dry overnight. And on a mommy and daughter only weekend jaunt to Bangkok in May she stayed dry for 24 hours – all it took was going to the potty every time her heavily pregnant mommy did (during an extremely busy schedule featuring taxi rides and appointments all over town).

Based on all of this the little mommy voice in my head kept clearing its throat and sweetly whispering “Potty Training! She’s Ready!”. The practical voice in my head (also known as the lazy voice) however kept shouting back “New sibling, not the right time, too much work, not the right time, kids with Down syndrome train later, not the right time, she can’t do her pants herself, not the right time.” But I kept coming back to her obvious signs of readiness and thinking that the longer I ignored them the more I was verging into the territory of not just “not training” but actually teaching her she was expected to use her pull up for her pee. And that was a point my lazy voice couldn’t shout down. So I compromised. A friend recently gave us her huge diaper stash so I thought, lets move Nava into cloth diapers so she starts getting used to feeling wet if she goes (something I feared the pull-ups she’s used to could be confusing). I told her cousins to really try to work on using the words wet and dry with her so she’d have a clear understanding of the vocabulary of what was coming next.

And then I got out the panties I’d bought a year ago. And the training pants I bought 6 months ago. And the training pants I bought last month along with the Piddle Pad for the carseat I bought at the same time (I’d been ignoring that voice a looooooong time). And I said, well, we might as well put her in panties when she’s just hanging at home.

And then I got very, very surprised. With regular potty trips initiated by us, the new Nava in Panties stayed dry. Stayed dry all morning, stayed dry when down at the corner store, stayed dry on bike rides (she actually told them she needed to go during the ride). NIP even stayed dry through naptime. It was at this point I was thankful for:
a)    the vagueness of Lao language. I didn’t ask anyone to be so gung ho on the panties but maybe that’s what it seemed I was asking for?
b)   The fact we live in a hot climate that easily allows for a toddler go around in panties only
c)    Our house, mostly furnished via going away sales, and sporting easy-to-clean tile floors.

So now, about 10 days after I mentioned we should ‘try’, panties are the default daytime wear. Today I snipped off the ends of all her onesies (so now they’re T-shirts with funny hems) and put away her rompers. I have extra panties in the car as well as a change of clothes. And we’re going with it. Today, with some constipation in the mix, it didn’t go so well (we came home with two sets of wet bottoms and a scantily clad child) but the successes have the accidents vastly outnumbered. I’ll take it.


24.8.12

We’re in Luck: Finding an Inclusive Pre-school in Laos


It’s time for me to get back to the that cliffhanger ending of a post a couple of weeks ago. I ended up visiting the two schools that sounded and were located best for us. One was more a playschool, very small, cute, and promising. One is a firmly Montessori, doing daily notes on each child, emphasizing life skills and self capacity.

Both schools (Tukata and Alpha for those of you following along at home) happily welcomed Nava to enroll.

::que happy dance::

Obviously, we are blessed to be able to afford private pre-school here but given that this is uncharted water we are in we still feel extremely lucky to have not dealt with rejection. Neither school felt it was an issue in any way. No discussion of aids, whether it will work out, etc. Her glasses have been much more a subject of discussion than Down syndrome.

We chose the Montessori school as I like the emphasis on lifeskills as well as the prospect of getting clear detailed reports of what she’s doing/enjoying/excelling in/struggling with. I think the detail will help give us ideas as we try to maximize her playtime-as-therapy, as I like to call our current home approach (also known as the living-in-the-3rd-world-and-ain’t-got-no-EI approach) .

School starts the first week of September; she’ll start out three mornings a week and as of today the plan is for me to accompany her the first day, sit quietly in the corner, and then we’ll evaluate how to best help her with the transition.

The times, they are a-changin’

23.8.12

Sibling Rivalry comes to town

It seems that 6 weeks is the magic number. The number of weeks before a two year old used to being the center of attention decides the small wriggly thing adults keep telling her is her brother (whatever that is) has overstayed his welcome and needs to hit the road.

We are now enjoying tantrums and whining like we've never seen before. It isn't always pleasant. So far it's all directed at me, not at Loka though and for that I am grateful. She seems to especially resent me nursing him though that's likely just because its what I do the most.

So for know we're trying to get through it with patience and empathy. Thank Buddha that the cousins are still on school break do there's no shortage of extra hands around the house. I try to go play with her as soon as Loka's needs are taken care of and am giving lots of hugs.

Another day, another developmental phase...

9.8.12

Firsts: Learning to cook

It's been raining for over 24 hours. Leaving the house would require 4WD like navigation of large mud bogs--all neighborhood roads are under construction. And it's nice and cool, cool enough that turning on the oven isn't a death sentence.

Based on what the universe gave us today I determined the best thing to would be to get back in the kitchen with Nava.

I'm on a mission to get through the stuff that's been gathering dust in the pantry--goods accumulated in part because some things are hard to source here so I tend to buy when I see it, not waiting for an actual plan to cook. In such a way I accumulated little bags of leftover raisins, figs, sesame, blanched almonds...and a bar of Kazakstani chocolate (a gift from a couch surfer I couldn't bring myself to eat so got thrown in the baking chocolate tub).

So I googled granola bars and we got to work. Nava quickly caught on to her two jobs: dump and mix. And she instantly developed a penchant for quality control too. Each new ingredient was subject to taste testing at length.

I had hoped to involve her in the mushing into pan step but by then cooking was boring and she had abandoned her post.

Oh well, they came out yummy- enough that Nava sweet talked her cousins out of most of theirs too!

Now to find a study step stool somewhere ...

In the kitchen

We've reached a really fun age around here. The age of sous chef. I don't know which one of us enjoys it more!

3.8.12

Wish me luck

I'm about to embark on something that scares me. Something I feel very ill-equipped to deal with.

School for Nava.

In so many aspects of raising Nava I feel so comforted by the experiences, insight and examples of other DS mamas--on blogs, on facebook forums...there's a ton of us and we've got each other's backs.

But on this, I feel alone (no doubt unnecessarily so but fear is seldom rational right?)

Nava doesn't have an IFSP (or whatever the acronym is for an IEP for under-3s). There is no government option here. Special needs is not a 'thing'; it's not visible. Lao schools don't take kids like Nava. Do preschools for the foreign community accept children with intellectual disabilities?

I'm about to find out.

Actually, I'm cheating a bit. There's one school that I know will take a child with Down syndrome because I know the kid and his parents and they told me. Shouldn't surprise you to hear that school is #1 on my list. It was even on my list when it was a French language school. We visited at an open day and they were lovely and offered to learn to sign so they could communicate. But Nava wasn't a walker and that plus a ton of other things made me think it would be better to wait still.

Because? Because simply, I fear rejection. We face so little prejudice (like none) against Nava. I love my little bubble of existence where I don't deal with jerk comments. Where I don't hear "not allowed". Where we are not rebuked. And I know the bubble has a finite life. It's just I want to have it for as long as I can and I deeply suspect finding a pre-school for Nava will be a gaurunteed way of bursting my bubble.

I'd love her to go to a montessori school. I suspect they'll say no. I roundaboutly inquired about the most well known one with parents, school board members, teachers and pretty much they all agreed they doubted they'd take Nava. Yes, I haven't actually come out and formally asked. Cause I like my bubble.

I started thinking about preschool almost a year ago as it came up in our playgroup. I managed to find reasons to not put her in school since then (many of which were good and valid reasons not excuses but the Bubble fear definitnely contributed to my reluctance.

But I resolved to suck it up now. Nava is walking confidently. She's starting to talk. She is intensely social. She needs to learn to play with others. She craves more experiences outside of our living room playroom. We are so lucky to have a full time nanny option so I've never dealt with daycare. We don't have to put her in school at all of course. But it feels like its time. If she doesn't like it we can drop it but I suspect she'll love it (eventually. I expect tears at first of course).

So this morning I called another Montessori school and asked if they have places. They said yes. I made an appointment to visit with Nava on Monday. I didn't tell them she has Down syndrome. I debated it but I know that it's mcuh better to meet Nava in person. If they meet her and say No then ok. But at least it will be a decision made after actually having met Nava and not a stereotype. 

And now I've gotta run. I'm off to the school I know will take a child with DS to meet the new management and see it's new location. I've been told its English speaking now too so one more reason to like it. We'll see.

I feel like I should see some other schools too and I've told people we will. But part of me wants to chicken out.

I like my bubble damnit.

Wish me luck. 




1.8.12

Preverbal much? Notes on my 2 year old's Speech Development

And now for something not Loka related...

Nava has made huge strides in her gross and fine motor development. Her social skills rock. Her feeding and eating are, well, typically toddler. One area I don't get into much on Navagating is her speech. This morning, while stacking blocks with Noi (she's so happy to be home and reunited with her blocks again!), Nava stacked two blocks and annouced "gaeng"--that's Lao for "well done." She continued to say it quite a few more times so it's definitely on the word list now.

In full confession mode, the primary reason I don't talk Speech much is because I don't have so much to brag about in this department. Nava's receptive language skills are superb in Lao and English and her signing is okay (I think it could easily get better if *we adults* worked on ours). Speechwise though, Nava struggles. She learned to say "yeah" quite a while ago and along with 'this' it represents the vast majority of her talking. We used to hear 'fish' but not recently. I think she's saying 'boh' or Lao for 'no' but I wonder if I'm just projecting since it's in consistent.

Speech is the one area we haven't done well getting 'expert' help-we've never really liked and/or gotten much out of the speech therapists we've pursued. The books I have on the subject are good but I find it hard to translate into the day-to-day. I think working on her reading would help her a lot but I gave that up a while back.

While we were in Bali however, Nava definitely started to show some new interest and skills in speech. She clearly says Dad and Daddy (not Mama though. Of course ::eyeroll::). She has a new much more dramatic version of yeah--she really drags it out and punches it--it's a very OTT delivery and is used when she's having fun, playing and joking. She started talking in for own language too. For me, this is more than babble as from her demeanor and delivery it really seems these are words to her. She "reads" books aloud in this new language-for-one even.

One day I decided to really try to ask her to repeat words after me (something we rarely do). I said ball multiple times and asked her to say it if she wanted the ball. She signed it, I asked her to say it. She pointed and said "this". I asked her to say it. Finally, she said 'ball' a couple of times. It was very clear that it took a lot of work on her part--she had to focus and concentrate to get it out. After saying it a few times, she refused to again and reverted to "this!" which is much easier for her to get out. I've read about Apraxia in the Down syndrome population and wonder if this is perhaps part of the package with Nava but have no one go see about it in these parts.

I've written this post partially to document where we are at the moment and partially to motivate myself to really give Nava's speech my focus in the coming months. My rough action plan consists of:
-(re)reading Play to Talk and It takes Two To Talk
-joining the James MacDonald's Yahoo group
-possibly ordering his instructional DVDs (as I can show these to the family directly rather than having to be the one who reads and then teaches like with books
-getting back to reading. Just not sure in what form yet.
-and to start, i'm gonna try to edit down a great article (see below) someone recently posted on a group I'm on and try to use that to talk to everyone in the family so we're on the same page in this regard. If talking is an issue in your house, I recommend giving it a read. It covers a lot of things I know I need to remember and do better on.

Anyone else DIYing speech therapy these days? Have any tips? Some been-there-done-that wisdom? Do tell!

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++


WHY IS MY CHILD A LATE TALKER?
                                                                    James MacDonald  Communicating Partners

This is in response to a parent asking about the causes of her child not talking.  My book Communicating Partners discusses this in great detail,. This is a a  summary for you to keep handy  as a valuable  guide to help your child talk. Avoid wasting time  on the causes. Use that time to get the job done with the strategies below.

Many wonder why a child is not talking.
Surprise! You can  help  him  talk without knowing why he isn’t!!
                                                         
After 40 years of clinical and research work with “late-talking” children, I find the answer is complex both in the child’s make up and his  interactions.  Many speculate on the reasons and generally get nowhere. A better path is to see how we can get the child communicating more. Thousands of parents and others have helped children become talkers without really knowing why he was a late-talker. 
Let’s not waste precious time looking to causes when we now know what we can do to help a child develop communicatively.

First of all, let’s ask: Where does a child learn to communicate and talk best?  Often when a child is language delayed, parents look to therapists or teachers to help.  Professionals can help but mainly when they are teaching parents how to do it in the home.   Families have the most contacts with a child and the one thing that it takes is constant interactive contacts that fit the child’s developmental world.

You will get much further by asking, “How can I help my child communicate and talk? than “Why is he not talking?"       Unless there are notable medical reasons, which are very rare, we will never know why. But we do know now how to help him become a talker.

COMMON PROBLEMS INTERFERING WITH  TALKING.
Forty years of research reveal many strategies and events that help a child communicate.  Before we get to them, let’s summarize the common problems that interfere with a child learning to talk.

1.    Not enough interaction.  Often  “late-talking children"  interact less with people. If a child is not interacting he is not getting practice or models for what to do.
2.    Overstimulation. Many children are in constant situations where others are talking so much that the child cannot try to do what he can do.
3.     Ignoring the little steps.   Often people do not respond to the sounds and movements that the child must do before he talks.  Every sound and movement can become a word but not if  it is ignored.
4.    Pressure to do the impossible.  Often well-meaning adults try to get a child to talk before he is ready. Then both the child and adults come to believe he cannot talk. Then he gets less practice and success.
5.    Not enough sounding practice.  Making sounds is easy for some and very difficult for others. When a child does not readily move from sounds to words, he needs more practice and modeling from people who sound in ways he can do.
6.    Not enough meaningful play.   Play is the developmental work of a child. If he does not play much in different ways, he is not having much to communicate about. The more a child plays, the more meanings he will develop. And those meanings are the basis of words. 
7.    Learned helplessness. Often when a child is not developing as expected, adults do things he really can do for himself. And so he let others do for him.  Adults often talk for a child who can try a little.
8.    Imbalance in interactions.  Often adults will take many more turns and talk so much that a child won't try.   Children  need time to communicate and it is difficult for adults to wait silently and allow the child to do what he can.
9.    Developmental steps are not enough. Adults are anxious for words and so they do not support the little sound and action steps that children must do  to learn to  speak.  When children's little steps are not supported, they do less of them and so talk less.
10.                  Too little social language.  When a child is a delayed adults  frequently focus on teaching words for school and not words for things  the child needs to communicate and describe his world.  He may learn language as something to imitate or answer but not to use to interact daily with his family.
11.   Little chance to communicate.  Many late talking children are given little opportunity to practice talking. The competent people around him often run the verbal show and he does not get  enough practice.
12.  Too much correction or criticism.  When a child is corrected or criticized for the way he talks, he is likely to talk and practice less.  We need to realize that the child is not making mistakes, he is taking developmental steps.


In our decades of clinical research with over 2000 families we have found many reliable ways that help children talk. They are easy and  can happen anytime.

First, lets ask the question: “What does your child need to do before he is a constant talker? 
Very few people understand what children and parents need to do before speech. So the first answer to the question- When will my child talk?  is when he interacts frequently with people who are doing actions and sounds he can do.  A major finding is that children talk more when they interact more with possible people. ‘Possible’ here means people who are interacting and communicating in ways the child can do.

So, first a child must interact frequently. He cannot be a loner. He needs to initiate, respond, imitate, and take turns with people who are acting and communicating in ways he can do.  Too often a late-talking child lives in a world with many more words and actions that he can do. It is a lonely, and impossible world. We must make learning easier for the child.

Then, the child needs to communicate, that is,  send and respond to messages with any actions or sounds he can do.  Most adults are anxious for a child to say words and they do not support the child’s soundings, which are critical steps to word.
When many adults try to get a child to talk, they rush to language too soon and the child and adult both think he cannot talk because the models and expectations are impossible for the child.

HOW CAN YOU HELP YOUR CHILD TALK?
Use the strategies below to help your child talk. They have proved to be successful in thousands of children.
1.    Play in his world so he will interact more with you.
2.     Match his actions. Do things he can do so he acts more like you. These will be his first communications.
3.    Match his communications.  Communicate in ways the child does and can try. Many adults talk  in ways a child cannot do.
4.    Get into his world of sounds and actions.   You are used to a world of thought and language but he is not ready for that.  Many late talking children need a great deal of social sounding, that is, making sounds back and forth with people who are showing next steps. 

5.     Translate sounds and actions into words.  When you do not understand your child imitate then translate what he does into one or two words showing him the next step.
6.    Play frequent sounding games.   Sounds are like balls to a child wanting to be a baseball player. Just as you would throw balls back and forth many times with such a child, you will benefit by throwing sounds back and forth with your child so he gets the practice to learn  and say sounds more clearly.
7.    Balance with your child by doing only as much as he is doing with sounds or words. He needs time to practice.
8.    Wait silently and do not talk for your child.  He needs time and he will talk less if you talk more.  The less you talk when interacting, the more he will talk.  It is so easy to talk for your child and then he gets little practice.


Finding the causes of  "late-talking"  is much less important than finding the solutions. And many solutions are in the ways parents and others interact daily with the child.

Look at your child and ask:
How often do people do the strategies above?
How possible, patient and interesting are they? Be honest. People may occasionally talk about his play or imitate him, but a late talking child needs a constant life of these strategies. And once a week isolated therapy will not do it. It must be a frequent way of life.  Parents need to be a matched and balanced and responsive playmate not a therapist or teacher.

The causes are in the past:
 The solutions are in the present.
 You can be the cause of your child talking more.

For more guidelines see the book Play to Talk (2007) and Communicating Partners (2004)
Dr. Jim MacDonald



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