Little Wins

This week has been somewhat difficult. For most of this week, Pod hasn't said a word, and I had a potentially serious Dr's appointment looming that I really didn't want to go to.

The umpteen flash cards I made her also became a focus, not for what was on them, but so she could order them and arrange them in lines. Of course, I didn't give them to her *all* at once, but they're now pretty controlled and I'm introducing them far slower than before.

On Wednesday we went to the storytime at the library again, and I picked up some books on ASL to increase my vocabulary. This time, she was happy to sit on me for the whole session as opposed to dancing or going on little missions to steal books from the storyteller. She didn't seem upset or disturbed, just contented to be where she was.

However this week hasn't been all filler and no killer, we've also had some little wins too.

Throughout the week, we've had some nice wins with the schedule, it does seem to be a nice stress reducer for her. She also clearly understands what each card means and the timeline, so that's a plus.

On Wednesday she started to knock back on the 'Knock Knock Box'. The 'Knock Knock Box' is this awesome activity that E brought around that's designed to increase her capacity for cooperative play. Basically, it's a box, with various items in it that are connected to sound. For example, there are toy horses inside (among lots of other things), and their sound (the sound I'm looking to get Pod emulating), is neighing. The box has a few rules, like I remain in control of the box, one item at a time, and each activity is initiated with me knocking on the box and saying 'Knock Knock'. Pod is then to knock back on the box, and then we sign/say "Open up", before opening up the box and getting one of the items out. Before, she didn't knock on the box, I had to get her hand and move it to knock, but on Wednesday, she actually knocked on the box. I then moved her hands to sign "open" and continued with the rest of the game. She still doesn't say any other things or make other noises in the game (except for shrieks of delight when I blow up a balloon and let it go), but still, it's a nice step in the cooperative area.

Last night she said the first word she's said in days, "TV".

Today, she came to me and signed 'want' at me, I don't know what she wanted, and she just patted me like I was a simpleton and then walked off.  We were working with flashcards earlier (telling today's story) and she said "TV" a few times, and "Teeth" (there are cards for 'watch TV' and 'Brush your teeth'), she also showed that she understood which one was which by pointing to the correct one when I asked her to show me (for example) 'go for a walk'. This makes me think that maybe down the line, I can use flashcards to teach her her alphabet. I'm also getting inklings of how to maybe teach her to read, but again, that's massively down the line, I think. I also laid them out in front of her and asked her what she wanted to do after she finished her lunch, and she pointed to the 'go to sleep' card.

She also gave me her 'more' flashcard when she wanted more food earlier, and I've introduced three more for her to carry with her for communication, 'Hello', 'I love you', and 'Follow me'. She pointed to each several times and I said them, then I used them to show her communicating 'Hello', and 'I love you'. She copied me, but we'll see if she understood what I was doing. When my husband gets home, I'll rope him into helping to model the purpose of these cards.

Earlier today, I was looking back at my memories from a year ago on Facebook, a year ago, Pod was saying words - in fact, a year ago today she Marco Polo'ed her dad! It's so easy to look back then and see the stuff she used to say, and compare her to younger children who are already forming sentences, and get so disheartened. That's really so easy to do. I mean, at the library a week ago, there was a little girl who was almost the same age as Pod who could read, like actually read. Now I know that there's no point in comparing children and that all kids are different and grow at different rates, but sometimes you can't help it, and sometimes you can't help but worry about it. All I ever seem to do now is worry.

But then Pod will do something.

Like come to me with two bottles, one that she likes and the other that she doesn't, and get me to transfer water from the one she dislikes into the one she likes.

Or she'll let me comb her hair without freaking out.

Or we'll have a cluster of those little wins.

And I'll feel a little less worried, a little more encouraged, and a little more like all of this could just work out in the end.

I think it's the little wins that keep us going.

Picture Communication Card Resources

Yesterday Pod and I met with E at the library to look at ways of supporting Pod during storytime. Unfortunately it was far busier than usual and so that, plus the addition of E at the session was quite disorienting for Pod.

E showed me some ways of helping her participate and not feel as worried around other children - which was good, and she also put me onto some great online resources for picture communication cards.

Today, the laminator arrived, so guess what I'm going to be doing tonight? This is reminding me of my days as an ESL teacher when I would make my own teaching mats. Print, cut, laminate, repeat.

So, here are some flashcard/picture communication card resources that I've found:

Super Simple Learning - E put me on to this resource, the flashcards are really nicely designed and often coupled with songs. However, when I went to download them, each flashcard was A4 sized. For teachers with a classroom full of kids that want to see, this is great, but for a mum just wanting to help her kid, it's a little much.

Kids Pages Flashcards - This is a fabulous page for action flashcards and basically any material for maybe creating a sequence of events to help explain what's going to happen to your child. There are so many different categories and for the most part, I think they're well designed. I also printed a few random 'round the house' type flashcards for a scavenger game idea I had (to check comprehension and vocabulary).

Practical Autism Resources - There are some communication gems in this collection. Many thanks to my friend Susan for the heads up on this one. Flashcards are photos rather than cartoons, which is also nice.

Living Well With Autism - My kid has no diagnosis, but it's really impressive how many resources Autism support groups have put together. I really like this pragmatic language board, I can see it being very useful.

We had another 'win' for the schedule yesterday (some of the above cards are going to also be used for making schedule v2.0). Bath time is an issue for Pod, and so I tried using the schedule to let Pod know what was happening. I went through it with her, and then said/signed "Ok?", and she nodded yes! She was still upset during her bath, I tried to use the emotions card that E gave me to ask her how she felt, but there was none for 'scared' and she was too wrapped up in her feelings anyway. Oh well, it was worth a try.

Speaking of the emotions card, she also indicated to 'calm' (at dinner), and 'tired'.

I'm counting those as 'wins'.

Making ALL the things!

 So I got on checking out http://csefel.vanderbilt.edu/, and it's awesome. Not just for parents of children with delays, but for all parents. They have all kinds of training materials and articles that I'm going to be going through when I get time.

The schedule that I made seems to be working out well so far. As you can see, it's pretty crude (I'm most definitely not an artist), but it's been a good way of letting Pod know what's coming up over the past day. I'm going to remake it but with sticky velcro pads on the back (currently the cards are being held on with tape that's folded back on itself - I improvised). I've also been looking into various picture card sets for not only this, but for aiding and encouraging communication on the whole.

I also got on making some sensory play items, namely some containers of various pulses (dyed) with random plastic animals mixed in. In the first container (a 'to-go' container from my friend's Gumbo event), I've concentrated on creating something that she has to dig through in order to find the animals. but in the other container, the pulses form the surface on which she can play with the animals. I have no idea if this will make a difference or makes sense in any way, I'm basically just making things up as I go along at this point. I figure anything that gets her to interact with different textures is a good thing.

I was worried about the dying process, but E's advice to use very little liquid (a mix of dye and vinegar) was good. The dye/vinegar combo is soaked up pretty quickly by the pulses and is dry enough to use within an hour (easily).

Anyway, I've got to go get ready to take a Pod to the library for story time.

Activities Round Up and Reaction

These are the suggestions from E and L (our specialists that come and help me learn how to help Pod) so far:

General

* Give a warning before finishing an activity she likes so as to give her fair warning and allow her time to put coping skills into play.

*Label emotions in a very concrete way. For example, when she's upset by something, include "Oh, you're sad/angry/upset." Then reset limits and explore options.

*Look up CSEFEL.vanderbilt.edu as they have great parent articles.

*Continue going to the library story time for social interaction and stimulation.

*Create picture cards in order to let her know what is going to happen before you do it so that she can be ready.

Speech

*Hold objects to mouth/point to mouth so that she can see how your mouth moves when making a sound.

*Continue to work on prompting the word "up" when she wants to get out of the high chair. Look where her eyes are looking and try to get a read on if a tantrum is brewing. Remove her before a tantrum.

*Use the 'Speech Box/Knock knock box' to work on cooperative speech skills.

*Sign when saying key words.


Sensory


* Incorporate daily water play. Start with a small bowl of water, a piece of paper, and a paintbrush. Have Pod dip the brush into the water and let her 'paint' on the paper with the water. Try to progress to dipping fingers in.

* Find other textures to play with: dried rice or beans, Play-Doh.

* Play with fingerpaint.

* Try and get Pod to brush her hair with your help.



This somehow seems less overwhelming when written down like this. I've found a simple "All done" while signing to be a very good way to end an activity. Sometimes Pod even hands me the stuff to help me clean up now. Labelling her emotions has also been good because now I can say "Sad choice" to her when she's doing something that will end badly and she's starting to get it, I think. I go to the library (weather permitting), and just made a picture board for her so that I can try giving her a kind of basic schedule to help avoid meltdowns.

Out of all of the areas to work on, I'm finding the speech the hardest. Probably because it's the area I'm the most stressed out about. But it's also the area that requires the most consistent reinforcement and the adoption of new habits. Things like remembering to sign key words while saying them, and pointing to my mouth to draw attention to the shape of my mouth when speaking are actually kind of difficult to sustain. I know it's just a matter of time before I get it. The Knock Knock box is perhaps the easiest out of all the activities to do.

As someone whose kid doesn't really play in a cooperative way, I love the sensory activities because it's becoming the nearest thing to play for us and I think Pod really enjoys them too.

Yet to do:

*Look up articles on CSEFEL.vanderbilt.edu
*Create sensory boxes with farm animals and dried goods.
* Continue working on the speech stuff.

Own ideas:

* Add two horses to the Knock Knock box with the associated animal sound.
* Create some little shakers and add them to the Knock Knock box. "Shake", "Shake"

Introduction

Around September/October of last year, my child all but stopped speaking. It wasn't like she was a great orator before that or anything. Just a typical toddler saying a few favourite words with varying degrees of clarity and even making her first questions. At first, it was easy to put it down to her having 'off' days, but the longer she went without speaking and the more the quality of her words declined, the more worried my husband and I became.

She's always been a little different. She spent her first months of life screaming for 6-8 hours a day. We'd talk about things like the 'period of purple crying', gas, and the dreaded colic. We'd rock her for hours on end, sing, carry her round the house, play white noise sounds, and bounce her in her vibrating baby bouncer. We tried massage, soothing baths, and gripe water. Nothing worked. But every night at about 8 or 9, she'd simply just stop.

As she grew older she seemed to throw her entire focus into mobility and breaking down the various baby gates we erected to keep her safe. By the age of one, she was walking and already had two gates under her belt.

We'd feel pride as we watched her fantastic problem solving skills at work, feel delight when she smiled or laughed, and explain her increasingly weird ritualistic behaviours as being 'quirky'.

And she really is quirky.

One morning at around 18 months old, she woke up asking "What's this?" and "What's that?", using them correctly to boot. We made a game of telling her and her repeating it back.

But then her words suddenly dropped off and certain stimuli really began to bother her; the sound of toilets flushing in a public bathroom, the sensation of water on her skin. She would no longer play with us, but use us as accessories in her play, eye contact was sparse, and she had to arrange everything into a certain order that only she knew.

We made an appointment to see the Pediatrician, who after a twenty minute consult and attempting certain tests with our daughter, referred us Kennedy Krieger and a county support program.

Our daughter, or 'Pod' as I'll call her here, was assessed by the county and now has a Special Educator and Occupational Therapist that do in-home visits. These visits have been helpful, but at times the information and suggestions of things to work on can get a little overwhelming. This is the first reason I decided to start this blog; to have a place to collate the various activities and suggestions in a place so I can better organize working on these things.

The second reason is, as someone pointed out on my FaceBook the other day, there is a taboo around this topic, and that far too many people are embarrassed by their child's needs. Pardon my language, but fuck that. There is far too much evidence about the benefits of early intervention services for children with delays and/or sensory issues. The stakes are far too high to allow petty embarrassment to hold us back from getting that help for our children. And really, what on earth do we have to be embarrassed about? Our kids have other needs, so what? It doesn't mean they're somehow of less worth or are less worthy of our pride. Fair warning, but I firmly believe my daughter is going to be a fucking force of nature in this world and I want to help her get there. Not just because I believe in my daughter's potential, but because there is a time when they will have to live in the world without us, and so we have to be their best advocates now. It is my hope that my openness here will help others to also be open.

Lastly, my final reason for creating this blog is as a place to collate resources and stories for others who are going through the same thing, and so I'll be posting everything from articles to ideas for sensory play and speech development activities.

So there you have it, that's what this blog's about.