Highlights of the Summer

Reflection is so sweet to me. 

Even though I am physically tired at the end of every crazy day, I never get mentally tired of thinking about where we were, and how far we have come. This is part of how I continue to find hope each day, by looking back at all God has done for us. He IS a big God. Nothing is impossible for Him.

We have made it through the first week of school already. Summer is officially "over" even though it is still too hot to go outside for very long. Well, maybe not for some people. I guess I should re-word that and say that in my opinion, it is still too hot  to go out and chase a two year old all over the yard for very long. 

This summer, I reminded myself that last summer, we still had no idea what Lilli was thinking. We did not know she was going to be able to read and communicate. She has reached so many goals and done so many new things since this time last year. We are so thankful.

Lilli continued to practice typing this summer, without the ipad. Lilli practiced typing on a touchscreen, the laptop keyboard, and flat pieces of paper with a keyboard printed on it. She worked with Leslie her teacher and Morgan her therapist all summer, to keep those skills she had at the end of the school year.

Lilli's communication with us is brief, because we don't have the ipad right now. But her attempts are encouraging, and motivate us to keep on going. She is a bright, curious, opinionated eight year old with words that are just bursting to get out. It's just that the slow typing has not caught up with the huge flow of thoughts and words inside of her, and it frustrates her. I feel like this summer, communicating with her was a little like trying to funnel a river through a garden hose - or maybe even a drinking straw. I pray that one day soon, the flood gates will open up.

Despite the challenges, we are still often able to figure out what Lilli wants. With some planning, she can tell us what she wants to buy at the mall. We can ask her what she wants for lunch. She can tell us that she has to use the restroom.  Last summer, before she could type, we went to Disneyworld and I panicked about how she would feel about going there. I could only guess what she might be thinking and feeling. The next time we go to Disneyworld, (oh yes, we WILL be going back one day!) I will just be able to ask her.

Here are some pictures from Lilli's summer. There are long stories behind some of them, but the stories will have to wait for "one day," when I have time to write them all down.

Therapy Riding 

Playing Crazy Eights with sister - Using a pool noodle with a slit cut in it to hold the cards (Thanks for the idea, some person on Pinterest!) her therapist helps her grab the cards and put them in the pile correctly, but Lilli does the choosing and playing.

Another summer of swimming with a tube - doing great with learning how to kick and move herself around the pool! 

New outfit she blew her birthday money on at the store "Justice." There is a story behind this outfit - how she picked it out, the whole scene. I almost did not let her get it because I am too thrifty, but it IS her money. She wears it all the time. (She'd better, for the ridiculous price. I might make her wear it all winter with a turtleneck underneath. You think I'm kidding.)

Lilli making her "I have something to say" gesture. (I imagine her to be saying, "Mom, I have a great sense of style. Now that I can pick out my own clothes, I am free from your thrifty, awful clothing choices! Hallelujah!" Well, not just yet dear. You blew all your birthday money on one outfit, remember? If you want more than one outfit to wear all year long, I still get to pick some cheap ones.)

 

Playing in the fountains. This is pretty close to heaven for my kids. 

Lilli with her ABA therapist, Morgan. Morgan was with us almost every day, all summer. We battled summer craziness together (all three kids, but mostly Josh causes the craziness) and she kept me sane. She's awesome.

Enjoying 4th of July fireworks together. (five year old Chloe put herself in Josh's stroller so she had a place to sit. Check out her outfit - all my kids have more style than I do. I just noticed, I'm wearing a black shirt in this picture like I said I always wear because I have no fashion sense. Well, I'm honest.)  This picture is much more significant that I have time to write about.  I got teary as Lilli watched the fireworks and laughed and smiled while sitting in my lap. So many small moments like this can get me.

We took several day trips to nearby towns and had a great time as a family. This was at an ice cream place. I shared my coconut ice cream with Lilli, and she loved it. Josh dropped his entire scoop of ice cream right off the cone onto the floor, and he didn't even cry. Jasen and I did, but Josh didn't notice.

 Some things that are NOT pictured:

-Lilli eating her first hamburger, ever in her life. (She liked it!) She has been trying all kinds of new-to-her foods, such as sloppy joes and steak sandwiches. This weekend she typed to me: "You like good food." I interpret this to mean that she likes to eat what I like to eat. She must think my cooking is pretty OK, and I take this as a huge compliment from an eight year old. Also I packed her many chicken salad and egg salad sandwiches this summer, and we were able to take a few day trips and have picnics. If this sounds weird that I am happy about what Lilli ATE this summer, it's because of how far she has come. Only a few years ago, road trips meant we were still stopping at convenience stores to heat up her pureed meals in a jar. I am so thankful to feed her a real sandwich out of a cooler on a roadtrip.This never gets old for me.

-Morgan, Leslie, and me reading "big girl" chapter books to Lilli all summer  - Nancy Drew, Beverly Cleary, and others. I'm reading "A Little Princess" to her right now, and Leslie is reading "Black Beauty" while Morgan reads her Nancy Drew mysteries. Again, I shake my head and think about how just last summer we were still putting out board books like "Brown Bear Brown Bear" and "Elmo's 123 Count with Me" for her.

We did not go anywhere for vacation this summer as a family. However, my sister blessed me with a long girls weekend away. I spent a few glorious, peaceful days in Florida with her and my niece Kelley. I read two books in four days, slept in a big bed all to myself (read: no kids coming in and waking me up and flopping around next to me all night), and OTHER people cooked meals for me and I didn't have to feed anyone else or do the dishes. It was the first time I have ever left all three kids for more than a few hours. Yes I said "ever." I don't know how to describe how much it meant to me.

 

I needed this small break so very much. I would love to take a long weekend away with my husband. But right now we do not have that luxury for several reasons.  Many parents who have small children can get to a point when they can leave their kids with someone for the night, or for the weekend. Jasen and I have not been able to do that yet.  But hopefully one day, we will.

It was a good summer.


-

The "Spelling Piano"

Here is my very first “slap it together” idea (see my last post) to share with the world: “The Spelling Piano.”

Purpose: motivate your kid to look at alphabet letters, spell words, find letters on a keyboard (both a piano keyboard and a computer keyboard)

Cost: cheap, if you have a toy piano. Or find one at a yard sale or thrift shop. Also something that is FREE. (You'll see later on in the post.) If you do not have alphabet stickers, you could use a permanent marker.  

How to do it: Put stickers on a toy piano. Click on a link for a free cool download.

Time required: depends on what your kids are doing at the time. If they are all asleep, this will take probably 5 minutes total. Maybe less. No mess, no clean up. Love it.

I would like to call it something more catchy, like “The Mystery Piano,” or “Spelling Music” but it’s not at all mysterious, and “spelling music” just makes me think “M-U-S-I-C.” So I guess I can’t slap together a good title, just a possible idea. Here is the idea I slapped together:

Piano with alphabet keyboard stickers.

I spent a buck on this poor pink piano at a yard sale, which has gotten little or no attention since I drug it home one early Saturday morning over a year ago. I thought my kids would love it. Lilli used to have a Little Tykes Light Up Piano, which she absolutely LOVED and played with for hours. Sadly, it broke and the company does not make it anymore, so I could not find a replacement. I saw this cute pink piano at a yard sale and brought it home for her as a substitute. But she would not even play with it. She didn’t even give it a chance. It does not light up. The demo songs were different. It just wasn’t the same. She plays our real piano often, and we can’t live without music. But this pink piano went into the pile of boring, I-don’t-want to-play-with-that toys.

About to have another yard sale myself, I held it for a moment before tossing it into the pile in the garage and tried to imagine what it could become if I breathed a little educational or therapeutic life into it. I counted the keys. Drat, only 22 white keys. Would be perfect if there were 26 for the letters of the alphabet. However, I tried it anyway. I took alphabet stickers and placed them on the keys. WXY and Z had to have a section of their own up on the sharps and flats, but that might be OK. Then I tried it out on the girls. We spelled out our names. We liked the way they sounded, hearing their names as a “song.” I spelled out “Mommy,” which had a realistic off-key, shrieky ending. 

Being a person who can read and play music, I paused for a minute to wonder if this would mess up my kids later on in life when I force them to take piano lessons and they tell their piano teacher, “This is a Z! My mommy told me that!”

But I quickly dismissed the idea because this piano does not focus on teaching a child that the keys have letter names. It is more about finding the letters of the alphabet and tricking, I mean, encouraging kids to spell out words, with added musical fun.

You, dear reader, could make this idea so much better, especially if you happen to have a piano with 26 white keys. Or maybe you might like to mix it up and include a bunch of the black (or purple) keys. The point of the spelling piano is to get your child to touch letters, press keys, and spell words while listening to the notes and “songs” the words make.  This would be most motivating to the child that loves music, loves the sound of the piano, and loves the feeling of pressing the keys and creating a song. It would NOT be good for a child that was currently taking piano lessons or any other beginning music lessons, because it would mess them up big time.

The best thing about this piano to me was that it was a stepping stone to the next, much much better idea. So slapping something together does have its benefits.

I wondered if some other much-smarter-than-me mom out there had already come up with this idea ages ago, so I google-imaged it. I did not find a beat up, yard sale toy piano with alphabet stickers on it, but I DID find something totally cool that I am excited to share with you: a free program that turns your computer keyboard into a piano while you type! It is called "Baby Computer Piano." It is the same idea. Each key on your computer keyboard is turned into a piano note. It sounds like a real piano! It is even better than the yard sale piano, but I’m not throwing the toy piano in the yard sale yet. There is still something to be said for using a toy that does not involve “screen-time.”

I have already downloaded the “Baby Piano” program and played with it, and my computer has not crashed. I love it, my kids love it, and the best part was it was FREE. I guess I should put a disclaimer out there, that I am usually wary of downloading free programs in the event that it has a scary file-eating virus hidden inside. But I am not that computer virus savvy, so some other smarter-than-me mom out there can figure that out too. Days later, my computer is fine, and the program is still fun.Here is a screen shot of it:

Screen Shot of Baby Piano program. I typed "HELLO" but it is hard to see in green.

       


While you “play” the keyboard, the letters come up on the screen. They are green and not that easy to see, so that is one part I would change if I could. Also every single key has a note, and when you push the space bar the letter “N” comes up. It makes it hard to type more than one word or a short sentence. Otherwise, it’s super, and it gets kids motivated to look at the keyboard and press keys. If you want to play the notes in order, you have to find them on the keyboard - a great way to teach kids the typing keyboard.

You can play more than one note at a time, even "chords." I think this would be a great program for people who are just starting out with trying to get a child to learn how to type, to familiarize them with the keyboard while making it fun and motivating. For us personally, it is perfect because we are always looking for ways to encourage Lilli to type.

This program has the added bonus that you can apparently have your child sit on your lap and “play” the piano, while you continue to surf the web at the same time. I personally do not enjoy trying to do anything on the computer with someone in my lap, but maybe that’s because all of my kids weight more than 35 pounds and squirm too much.

Here is the link for the free Baby Piano download:

http://www.cfxy.me/eng/productinfo.php?id=2

So what do you think?  

Debut of “Sloppy, Slap-it-Together”

I have secretly been harboring feelings of jealousy and distain. Shame on me.

You may be surprised at the subject of my feelings, and I will confess them now to the public.

For many months I have perused the blogger world, and the world of Pinterest which links to the blogger world.

I have been privately and wrongfully scoffing at all the many hundreds of crafty bloggers, who concoct impressive projects with effortless ease, snap pictures of every step, and cheerfully bubble on about how excited they are to find a new object to mod podge. I have cracked up at imagining how the blogging cook must stop, wash the hamburger off of her hands, take a picture, and then dive into the next step, only to stop and wash her hands all over again for the sake of digitally capturing every painstaking addition of an ingredient.

However, I am a hypocrite. Because as I crack up and scoff, I am also taking notes. I am bookmarking, favoriting, and pinning. I have tried new recipes and pinned ideas for my kids. I bought mod podge. I confess that I even made a wreath for my front door from the inspiration of Pinterest. (But this was only after I realized that we were the only, I mean no exaggerating, ONLY house on the entire street - I checked - with a plain, empty, dirty-with-smudges, front door. Not that I care. Well, obviously I do because we have a wreath now. Anyway I digress.)

I realize that this is the internet we are talking about here, which is NOT REAL LIFE most of the time. I know that the blogging cook may very well be screaming bloody murder at her kids who are beating each other to death with train tracks in the next room while she is snapping those seemingly peaceful and delicious photos. There may be a few genuinely blissful, silent, peaceful, crafty bloggers, but in general I prefer to imagine them with glue in their hair and paint on their nose, quickly pecking out their blogs late at night with a sink full of dishes, toys all over the floor, and a toddler collapsed next to them on the couch. Because to me, that is real life. Do you imagine me sipping my coffee with classical music playing in my serene, neat-as-a-pin office while blogging? I don't have an office. I have a laptop propped up on a baking rack on a second hand table in the corner of my kitchen, surrounded by piles of books, crumpled papers and an overflowing shredder. And there are lots of dishes in my sink right now. The classical music part might be stretched to truth if you count a Baby Einstein movie playing in the next room, where my kids are beating each other with train tracks. I intervene every few sentences or so. It takes me days, weeks, sometimes months to finish a blog post. Time is warped on the internet. And so it must be with crafters, I assume. Unless they have a cleaning lady, nanny, and secretary, it must take these crafty women several messy days or weeks to complete a project as well.

Therefore, this is my public apology to anyone who blogs about anything that involves creating and making. I am sorry for judging you as being perfect. Because I was wrong, I know this now. You are real people. You just choose to focus on and publicly blog about your projects, not the messy parts of your life. Just because you do not write about it doesn't mean it's not happening. You have the right to your privacy. And that is fine, I am OK with that. I also apologize to anyone who thinks I am amazing, organized, super-peppy and creative, and just an all around blissfully delighted crafter. Sorry to let you down, I'm not. That just made me laugh to even type out such a ludicrous idea.

So begins the theme for the next few posts I have planned. If I were to create a new blog, I might call it: "Sloppy Mom Tries to Slap Together Something and Call it a Craft." Now that would be a fun blog to pin, wouldn't it?

I have ideas. I want to share them, because maybe another unorganized mom or dad out there might see an idea and think, hey, if that sloppy mom can slap that together to help their kid while her house turns into a disaster area, maybe I can do it too!

Yes, dear, you can. And you also might be so much better at it than I; simultaneously stroking the head of your sweet child with endless patience as she reads a book to herself while you mod podge to Mozart.

Most of my ideas are cheap – sorry, I have to get the lingo down here – I mean "frugal" ways to help a child with special needs. Long ago I became fed up with the astronomical prices in the special needs catalog full of unattainable gadgets. I would thumb through the pages with longing, wondering how our lives could be changed if only we could get insurance to pay for some cool "adapted" button or switch. One day I was lamenting to someone about how we could not afford a hundred dollar button that happens to have a similar name to a popular fast food hamburger. If only we could have a button like that, Lilli could learn to push it when she wanted our attention instead of crying. We could record messages on it. We could teach her to use "words" to communicate, I complained.

"It's like that button at Staples, right? The 'Easy Button?' Maybe you could get one of those and rig it to say something different," my friend commented. And that was where it all began for me. We now have "Potty Buttons" all over the house, and I have given several away to friends with non verbal kids. Most parents of kids with special needs cannot afford the expensive hamburger-named button that is not covered by insurance. I am still on a mission to find new ways to make cheap "talking buttons." Expect a post on that one of these days.

After scouring the east coast for small recordable picture frames, I also began to look at yard sales for "therapy toys." I went overboard, buying so many toys to use with Lilli that we did not have room for them all. But those yard sale toys taught Lilli amazing skills. I would love to share about that. This has become a fun little hobby, a mini passion of mine, to find frugal ways to help Lilli. I hope that someone else might benefit from seeing these ideas, and maybe it will help some other child with special needs.

My first post will be about my latest "slap it together" idea: The Spelling Piano. Look for it soon!

Eh Eh Eh…Use Your Words

(I wrote this in January. Sometimes it takes me a long while before I post something. I don't know why I do this, but I have a lot of posts that I never put up on the blog. Maybe other writers do that. Anyway I finally decided tonight that this should have a place on the blog. It is dedicated to parents of kids with special needs who dread dealing with strangers out in public.)

 
I don't bristle when people stare at us in public.


We get stared at a lot. People are curious about my Lilli. She draws attention, with her "different" walk, the noises she makes, and sometimes loud crying. (Especially in Target.) I don't enjoy the stares, but I don't tell people off or shoot them dirty looks. I also don't get too bothered by ignorant questions about Lilli's special needs. But I have not had any lately. Josh runs interference for me. It's hard to have a conversation with a stranger when you are chasing a toddler that is grabbing merchandise off every shelf.


I wish people would either ignore us and go about their business, or say something nice to Lilli, such as "What pretty blond hair you have!" Strangers are always telling Chloe that she has beautiful red hair. Strangers don't know what to say to Lilli. Countless times, a well-meaning stranger will say, "Look at all that beautiful red hair!" to Josh, Chloe and me, and then they will glance at Lilli, the only NON red-head, and go silent.


Awkward.


Friends of mine who have kids with special needs get all kinds of rude comments and questions when they are out in public with their children. Usually when we are out in public, someone is yelling, crying or throwing a tantrum. Many times, small talk with strangers just does not happen. We are in our own little world, and any stranger who dares to ask a dumb question might get sucked into the circus to help with one of the kids.
But there is something that makes me stop dead in my tracks, and my temperature begins to rise. It's when someone makes the sound "EH EH EH EH!" at Lilli. I am trying to sort this out mentally. Would I feel the same way if someone made that sound at Chloe or Josh? Mmm, probably not. But I don't hear people make that sound at Chloe. Sometimes people use the "EH EH EH" sound with a baby who is about to grab something they shouldn't. Most of the time I hear people use that sound with animals. I guess that's why it irks me. It happens more often than I care for, to Lilli. It is a teeny thing. I think simply because Lilli's intelligence is finally being revealed, I am sensitive to it.


We have been going to an outpatient clinic for speech, pt, and occupational therapy on and off for about two years. Right now it is just speech and occupational therapy ("OT"). Lilli knows the routine by heart. We always park in the same handicap parking spot. We always walk up the long ramp in the back and hold onto the white metal railing. I push Josh in the stroller (so I don't have to chase him), and Lilli walks next to us. When we get to the building, we push the handicap button and the doors swing open. I push Josh in and Lilli takes off. I let her. We do this every week. I know where she's headed and I will catch up.
She's headed to the fish tank.


She runs clumsily through the long waiting area to the tank (I love that she runs!) and stops dead in her tracks in front of it. I catch up to her and park Josh in the same spot I always do in front of the tank. Josh points at the picture of Thomas the train on the wall and yells "Choo choo!" Every week. Lilli is in temporary heaven as she watches the fish hover near her nose on the other side of the glass. She makes happy sounds and laughs. We count the fish and I talk about what color they are. She usually goes over to the nearest stranger on the loveseat next to the tank and gives them hugs and kisses. Sometimes the person is flattered and hugs her back. Sometimes the person feels awkward and mumbles, "Oh, uh, ok…" while being squeezed by Lilli. I usually say something like, "I guess she thinks you could use a hug," as I try to pull her away. Lilli often puts her hand over people's mouths. I will have to ask her why she does that. She does it when they are not talking. Is she trying to tell them she wants them to say something? Or is it her way of showing affection? Kind of like kissing someone with her hand. Who knows. It is awkward to have your child put their hand over a complete stranger's mouth. We tell her she can't do that. But it's really nothing to sweat over. I smile a lot. Most people are understanding.


Soon the therapist comes out into the lobby to greet us. "Say good bye to the fish, Lilli! Time to go. You can see them again on our way out," I say as I take her hand. She waves at the fish. I am so proud of her.
One morning at therapy, I rave about all the new things Lilli has been doing to her OT. It is right before Lilli's eighth birthday, and she had just begun to type. Lilli does great. When we leave, Lilli runs again to the fish tank. I always let her have a few minutes to say goodbye to the fish. I love how we can come to this clinic and Lilli is so independent. She is really growing up, I think. As we stand there, plans begin to form in my mind. I want to get her a fish tank for her birthday, and type about fish with her.


Soon, it's time to go. I have learned to give Lilli a head's up about that. She does much better when I have her wave goodbye to the fish. Parents wait all over the long, child-friendly room with babies and toddlers. There are three women sitting at a round table right near the tank. Lilli waves to the fish, and heads for the door. She takes off from me, running, but it is ok because I know she knows where we are going. She will stop at the end of the lobby and wait for me to open the first set of doors.


She is about ten feet away from me when one of the ladies at the table belts out:
"EH EH EH EH EH EH!!!"
I pause.
Was she making that sound at my daughter?
I look at her. She is looking at Lilli.

Yes. She was.


I pick up my bag and begin to push Josh in the stroller, following Lilli. "It's ok, she's fine, thank you," I say over my shoulder to the women. But it kind of unnerved me. I reach Lilli, who has stopped and is standing at the end of the room waiting, like she always does.


"Come on, let's put on your coat before we go outside," I say softly to her. "Help me push the button for the doors, ok?" She takes my hand and we walk outside in the chilly morning air. In that moment, I feel the stark difference between belting "EH EH EH" at Lilli and speaking softly in complete sentences to her about putting on her coat.


I try to process what just happened. I feel like someone just popped my balloon. I spent my whole morning speaking in paragraphs to my non-verbal daughter. I guided her with gentle directions and praised her. I made comments to her. I gave her choices. I asked her questions that I knew she would not be able to answer out loud, but I asked them anyway. I hope the thinks about them and answers them in her mind. I reflect on how well she followed my directions and was aware of the entire, familiar routine.


Those ladies did not know that two years ago, Lilli used to collapse in front of that fish tank and wail. She has come so far. She can finally communicate through typing. She can follow some simple directions. This is a tiny area of her life where she is actually learning to be an independent person, because she is comfortable with the routine and she knows what to do. I am thrilled to finally know with certainty that when I talk to her, she really understands. And I think the most important thing to her right now is that I know that she understands and I treat her like an eight year old - not a baby, or a dog even.


When someone yells "EH EH EH EH" at my non-verbal daughter, it bothers me. Maybe everyone does it. Maybe it's the universal sound for "Don't do that!" Maybe I should not waste my time thinking about such trivial things.


But maybe I'm bothered because the sound "EH EH EH" implies that the child (or animal) does not understand words, and you have to resort to unpleasant sounds to get the idea across to them. I brush things off because I know people are ignorant. It is ok. No one can be completely empathetic to every person on the planet. I think that a mom of a child with special needs has to brush these kinds of small things off every single day.


Later that day, I decide to ask Lilli herself if it bothers her. She types yes. I ask her why and she types "Because" and stops. She is not sure how to type the rest. After some prompting, she types "Because very mad." I ask her if she means that she thinks the person who is saying "EH EH EH" to her is mad at her. "Yes," she answers.


The most ironic thing to me personally about all of this is that we tell our children constantly to "Use your words." So why would we use noises to communicate with a child whom we are desperately trying to teach to use words?


I think that the only thing I can do is to teach Lilli to stand up for herself. I will teach her to type, "Please do not make that noise at me. I understand. I am smart. Use your words."


Or maybe she should just type: "EH EH EH! Use your words!"