Told In Pictures

Little Man with his swim coaches, James and Meghan

Sweet Pea's version of a superhero costume (she picks it)

To Infinity and Beyond!

Time Out and not happy about it!

Water Fountain??

Or bidet??

Didn't see that coming!

Lollipop Swim Meet

Little Man swam in his end of season Lollipop Swim Meet this morning and I couldn't have been more proud of my little guy.  He swam the short kick board heat first (across the diving area).  I knew he was nervous but he jumped in and kicked his little heart out.  The next heat was the 25 meter kick board race and even though he has said that he was going to go slow so that his friends could win his competitive edge must have kicked in because he was kicking hard and looking over at the competition to make sure he could touch that wall first.  The last heat was the 25 meter free style and there was a mix up in his age group and he didn't get to swim.  I was very disappointed because this was the one I really wanted him to do.  I felt that it would boost his confidence the most and really show him how much he has learned this summer.  So I talked to the swim manager and he said that he could get Little Man in a heat, but he would have to swim against the big kids (7 and 8 year olds) instead of swimming with the 6 and under group.  We asked his coach James to get in the water with him to boost his confidence and off he went to swim with against the big kids.  I was just so happy that Papa Bear would get to see him swim all the way across the pool.  They are allowed to grab the lane line if they need to take a break while swimming across and he and I talked about only touching it 3 times.  I had heard from other parents that it was good to give them a goal so that they weren't grabbing it every few feet.  Little Man NEVER touched the lane line, swam all the way across and he finished first!  I have a video of it and you can hear the other parents surprise at how well Little Man is doing and then when the camera goes crazy it is because I realized that he was going to finish first and was jumping up and down so I didn't catch the end of the race on video.  He got 3 lollipops, one for each race and he ate two of them at the exact same time.  He has come such a long way from the beginning of the summer when he cried through the entire first practice.  Even though he has come such a long way, we still had the same conversation in the car on the way to the meet.  He said he was nervous and had a tummy ache and I told him that all he had to do was try and do his very best.  I am always so very proud of his very best!

Here is a video of what I could capture.  (I missed most of the finishes because I was just too excited! but here is another view of the race that gets the finish.)  Lollipop Swim Meet Video

warming up with a streamline dive into the pool

25 meter kickboard

Checking out the competition!

Graduation

This is Peanut getting his graduation medal from his clinician.  Do you see that smile of pride?  Well it hasn't faded, not even a little. 

Here is a short clip from his graduation with his clinician telling everyone what they worked on and Peanut showing off his new skills. 

 http://www.youtube.com/watch?v=C5NosD9navA

Little Miss Bossy Pants

"Na Na, Ja Ja! Come 'ere!  No no no (she says as she switches off the tv) nap time.  Yet's go, oov(move) it!" She herds her brothers towards the steps, shaking her little finger at them if they even glance in a different direction.  "Ni nite" she says and pushes them into their rooms.  Then she happily tippy toes into her own room to be boosted up into her crib. 

Everyone is well aware of who is in charge in this house and it certainly isn't me anymore.  She wags her fingers at Peanut (who she calls Na Na) if he lingers too close to the dividing rope in the pool and she cheerfully tells on Little Man (Ja Ja) if he doesn't do everything to please her.  My favorite part is that while the boys don't like to be bossed around by each other they seem to accept it from her.  Peanut pretends to be eaten by a shark to make her laugh in the pool and Little Man reads her Moo Baa La La La over and over as she demands "more book" from him. 

She may be the youngest and she may be the smallest but she is also the loudest and the fiercest and the bossiest.  I think that this is how things are supposed to go.

So Proud

Little Man is only 5 but I have very high expectations of him.  Not in the sense that I expect him to excel academically or in sports or even socially.  But I do ask a lot of him in the sense that he must be kind and loving and put others before himself.  Today after practice there was a pancake breakfast for all of the swimmers and siblings.  I gave him a choice and told him that we could skip swim practice or we could go to swim practice but he couldn't participate in the pancake breakfast because Peanut couldn't eat the pancakes (the mix they use has corn syrup solids).  He asked if he could sneak off and have the pancakes if his brother wasn't looking.  I asked him how he would feel if he had to watch Peanut eat a delicious, wonderful meal if front of him knowing he couldn't eat it.  He agreed that he wouldn't like it but said he really wanted to go to practice.  So off we went and Little Man never even looked over at the pancake breakfast, he didn't ask or even mention it once.  Later in the afternoon I told him how proud I was of him and he smiled he adorable little smile and said "I'm proud of me too". 

*as a side note, I bring alternate food to just about every event, birthday, restaurant, camp etc.


________________________________________________________________________________

I was putting Peanut (BACK) to bed this evening.  He is so darn cute and I couldn't help but pick him up and give him another hug.  I ws putting him back in bed and whispered all of my love to him.  He sat straight up in bed and said "snack" emphasizing the "s" sound.  He is so darn proud of that "s" sound and so am I!!!!

The Trouble With Sweet Pea

The trouble with Sweet Pea is simply that she won't keep her clothes on.  Every day I try a different outfit in an attempt to thwart her inevitable strip tease and it doesn't work.  She is just too good at getting her clothes off.  The real problem is that I need to potty train her.  She is ready.  I am not.  I just need a few more weeks to get through the busy part of the summer and then I can devote some days to naked booty potty training time.  At least once a day I watch her pull her pants down, take off her diaper, get wipes and wipe her self, get a new diaper, lay it out and attempt to strap is on herself.  Yeah, she is ready.  The trouble with Sweet Pea is that she thinks she is somewhere between 3 and 5, the ages of her brothers and wants to do everything that they do, including peeing in the potty...standing up. 

Champ Camp Dance

This is Peanut's camp song, they are learning it to perform at graduation tomorrow.  He hasn't been participating much in the small and large group singing and dancing activities. According to his clinician, he does a lot of watching and today he did the "muscle" move. 

This afternoon I was playing the song in the room while the kids were playing just to get Peanut more comfortable with the song and next thing I know he starts dancing.  I grabbed my ipad and bribed him to do it for me again and he started to sing the "Oh oh oh" part.  This is the first we have ever even heard him attempt to sing with a song and the fact that he knew all of the parts of the dance shocked me.  I showed Papa Bear and he teared up.  I thought my birthday couldn't get any better when Peanut said "Happy Birthday Mom!" but I was wrong.  This made my entire year!

Peanut's Champion Dance

* warning - apparently Sweet Pea decided to spice the dance video up with a little strip tease at the end.  At least we keep it interesting!

Camp Champ - where we've been and where we're going

Days 2 and 3 of camp have both been outstanding for Peanut.  He is participating more in the large group activities and a bit more in the small group activities.  He continues to learn and thrive in his individual sessions with his clinician.  Last night at dinner he used his new functional phrase of "Can I have" in a very slow and methodical way that I have never seen.  He is working on "turtle talk" so that he can slow down his words and sentences so that he can be more intelligible and it is really helping.  We are giving him a tactile cue on his arm to help him remember to slow down and he seems to be responding well.

In the small group activity, Peanut refuses to participate in the singing and dancing.  It breaks my heart to watch because I know he can't sing, not words anyway.  Songs have a different cadence and they go too fast for him.  I looked at another mom as we were watching both of our kids and said "Oh I wish Peanut could do what J is doing."  She looked at me with eyes that know first hand the fears and worries that keep me up at night and said that J was exactly where Peanut was 2 years ago.  See J is two years older than Peanut which is hard to remember when you just want your boy to be able to sing the song and do the hand motions along with everyone else.  She patted me on my back and told me that this was my future, Peanut would get it, he will sing and he will talk in longer sentences.  He will.  This is our future. 

I feel like I spend a lot of time living right in this moment when it comes to Apraxia.  I try not to think too much about the future because honestly, it scares the crap out of me.  There are so many unknowns, but the known quantities is that typically children with apraxia have difficulties learning to read and spelling tests are apparently torture.  I don't spend a lot of time in the past either because remembering when Peanut was totally non-verbal is hard.  Remembering him prompting his own mouth while trying to get a word out can be heart wrenching or how he would get "stuck" on a word and not be able to move past it causing him so much frustration.  But this week of camp has reminded me that the past isn't just full of difficult memories, it serves to show us how far Peanut has come and the future doesn't have to be scary, it can be about how many more triumphs are in store for him. 

As always, he is my hero.  He is working so hard to get his s cluster sounds, slow down his talking and use his phrases that he knows.

Camp Champ - Day 1

Peanut rocked his first day at Apraxia camp.  If I had any doubts that were doing the right thing by sending him to this camp, they are gone.  He transitioned from me to his clinician easily which was facilitated by the 5 or 6 skype sessions he has had over the last few months.  They were so prepared for us.  We walked through the doors and the organizer of the camp immediately greeted him by name.  HIM, not me!  He started the day with small group and he was quiet and asked for his chewy a lot at the start.  I was nervous for him as I was observing and was hoping that he would come out of his shell.  He would talk quietly to his clinician but didn't really engage in the group.  Then he had individual therapy.  I won't lie.  I cried.  She worked on the functional phrase "Can I have..." and he has always motor planned "Please me can have some...." all said very quickly and somewhat unintelligibly.  When I heard him say "Can I have the purple fish?" It was precise, slow and perfect.  Then she worked on s cluster and when she reminded him by making him watch her mouth and giving him a tactile cue he would get it.  BUT it transferred to home without prompting.  This afternoon he was playing a speech game on the ipad and he was making something spin and he says "spin" with the "s" and then turns almost surprised with himself and said "Mama, you hear me?  You very proud me?  I say ssssspin!"  They did an obstacle course in the large group and he didn't want to do it.  That doesn't surprise me at all.  He is the youngest kid at the camp and there are some kids that are 8 and 9 so I am sure he was just overwhelmed by it.  Overall, he had a blast, learned a lot and said he can't wait for more camp.  I couldn't have asked for more.


This is the email that I got from his clinician this afternoon:
I think Logan did a really great job today--he is such a hard worker! I'm very impressed with his ability to be flexible and participate in all of the activities.

Small group and large group were a bit more challenging than individual, probably because there was so much going on at once. We're splitting up the large group tomorrow so hopefully that will help him feel a little less overwhelmed. There were no tears or anything, but I could tell he was getting tired and overwhelmed when he didn't say much and got quiet. It seems that he feels more comfortable getting energy out during individual therapy, so I'll continue planning active tasks for the rest of the week.

As far as speech goes, I think he did well overall. He was able to produce p, b, and m most of the time in word-initial position. He was also able to produce s clusters (in 'stop, snack, swim') with support, which are pretty hard sounds to say. There were times when Logan was speaking very fast and I could only understand a small portion of what he was saying, but he seemed to either try to self-correct or choose another word/phrase. While this can be a helpful strategy for him, I'd like to try and help him say what he was originally planning to say by slowing the rate down & breaking it up into small sections .

Camp Champ

Peanut will be attending Camp Champ next week.  It is a week long intensive camp to treat Apraxia.  I am excited, nervous, anxious and overjoyed that he is able to do this.  He will be 1:1 with a clinician for the entire camp which is amazing and he has skyped with his clinician (Becky) once a month since March so he is familiar with her although I am still really nervous about the transition when I leave him. I can stay an observe in a special room that has headphones and a two way mirror but if he is crying or upset I am not sure that I will be able to watch that.  

It is such a nice change of pace to be taking him somewhere that is outfitted with everything that he needs.  All of the kids that are attending are on a special diet of some kind so they are happy to comply with his corn-free eating and they have the weighted vests and other things that help him organize his motor movements.  I can't explain how comforting it is to be taking him into a camp or social situation where I don't have to explain that he has apraxia or that he is on a special diet or that sometimes he needs extra input to organize himself.  This will also be the first time that I will meet other parents who have kids with apraxia.  Sometimes it can be isolating to be the only one you know dealing with apraxia and I will be literally surrounded by 12 other families from across the country who have experience with apraxia, who are walking the same road we are walking.

I know this isn't going to be easy.  Logistically it is a nightmare with Little Man and Sweet Pea needing childcare and Papa Bear not being able to take off much work, but with amazing friends who are all pitching in to help, we will make it work.  Emotionally it is going to be difficult because I have such high hopes for the strides he can make.  I keep hoping that one day he will just be cured but that isn't how apraxia works.  I have to set my sights on a smaller goal.  I am hoping that at the end of this week he will be able to say Sweet Pea's name, his own name (First and Last), motor plan some sounds that he doesn't have like "l" and "r" and some key sentences (intelligibly) needed to interact better with his peers.  Physically we are all going to be drained with the juggling act that will be our week.  I will be taking him to camp and staying to learn and observe all morning then rushing home to work in the afternoon and then having single parenting duties so that Papa Bear can make up the work hours that he is missing in the morning. 

So it isn't going to be easy.  The really good things in life never really are.  It is still going to be amazing.  It is going to be an experience like we have never had and we will make friends and we will learn and we will get more words and sentences and motor planning sounds like "r" and "s" and "l". 

It isn't going to be easy for Peanut either.  He has never had this type of intensive therapy. He is going to be exhausted and cranky in the afternoons because he will be working so hard in the mornings.  He is going to be pushed and taught new ways to motor-plan to build pathways for his brain that he hasn't ever had before. 

It isn't going to be easy, but it is going to be amazing!

July 4th - Plan A

Tonight was a rousing success!  It was the first time we have gone as a family to see fireworks.  Now we know we can do it and that it is worth it.  We started the evening with a dinner out at Applebee's (courtesy of a giftcard provided by Papa Bear's parents) and then we went to Cherry Hill park.  It was roped off with yellow caution tape (because of damage from the storm) but we decided that we didn't care and proceeded to have the whole place to ourselves until the police showed up and we high-tailed it out of there.  Then we went to George Mason High School and picked a spot to enjoy the fireworks.  We had about 2 hours to play soccer, run around, eat snacks and listen to the live music.  Then the show began....

At first all 3 kids were terrified.  We were standing singing the Star Spangled Banner and as soon as it was finished big blasts went off in the sky and all 3 kids dove for cover.  Then they began to relax and started to enjoy it.  Peanut kept saying "This is beautiful.  I am not scared at all.  Let's get out of here."  Eventually he dropped the "Let's get out of here" and started yelling each color of firework.  Sweet Pea was covering her ears and saying "pop.  boom" and seemed to really like it.  Little Man was asking a million questions.  Seriously, the boy never stops. Anyway it was "What if the fireworks land on us? I mean, I know that they won't because you said they won't but what if they do? and "Can you see fireworks from space?"  "Are they landing below the clouds or above the clouds?"  "How can someone light them so fast to go off right after the other?"  Finally I asked him to just be quiet and enjoy the fireworks.  The silence lasted 30 seconds and then I pretended I couldn't hear him over the loud booms of the fireworks. 

What an amazing fun family day.  It is one of those days that I know I will remember forever. 

Lessons for next year:
1.  Park in the same spot in front of the school - there was no traffic to get out and we made it home in 15 minutes
2.  Bring pajamas again to change into at the car.  We were all way too tired to mess with anything other than falling into bed.
3.  Bring two soccer balls and other distracting items to kill time before the fireworks start.  (we brought one soccer ball and I don't think we would have made it without it)
4.  Bring earplugs for all of the kids - it is just precautionary plus I think they would enjoy it more if they didn't have to cover their ears the whole time

Happy 4th of July

Tonight we are taking the kids to their first firework display.  Papa Bear and I have a well thought out plan that includes late naps, dinner at Applebees, a favorite park followed by fireworks at a local high school.  The pajamas are packed in the car so that we can put them right in bed if they fall asleep in the car.  We have a plan.  Plan B is to scrap Plan A and get them home and in bed so we can have a glass of wine and forget all about Plan A. 

Power

Peanut's Angry Face

This is how we have all been feeling over the last 92 hours.  We lost power due to a derecho storm that blew in from Chicago.  It was a quick storm with a ton of lightening and 80 mile an hour winds that caused over 1 million people to lose power in VA.  It was an experience, for sure.

Day 1 - priorities were finding coffee and breakfast so we drove around for 45 minutes looking for someplace that was open.  We couldn't find any place open, huge trees were down, lights were out everywhere...after a long time and a tip from a friend we ended up in Alexandria at McDonalds.  Then we went to a park near Papa Bear's office and just sat.  We just wanted to have a plan but we never expected that it would be another 80+ hours before we got power back.

Day 2 - priorities were finding food that Peanut could eat (corn-free) when we were still limited to a few fast food places that were open and staying cool.  The heat index was 103 and we were melting.  Literally.  So we went to the pool and camped out from 12-5 and then had dinner and all went to sleep in the basement.  The boys slept in the playroom, Sweet Pea slept in a pack n play and I got the spare bed.  Papa Bear was relegated to a couch on the main floor so that his snoring didn't wake us all up.

Day 3 - priorities were staying sane.  Papa Bear went back to work (and I can't lie, I was a bit jealous) and the kids and I were at the pool for the morning.  I napped Sweet Pea in the basement but kept the boys in the car watching DVD's so that they wouldn't wake her up.  W

Day 4 - I was close to losing my mind and a friend helped out by taking Little Man to swim team and pancake breakfast so that I could run some errands with the littles.  We got power back while we were at the pool and spent the afternoon throwing out hundreds of dollars of food, washing dishes and laundry.

Lessons learned - we need to have an emergency pack of food that Peanut can eat because it is next to impossible to keep him corn-free when grocery stores are closed and we have no refrigeration.  Battery powered sound machines are key and when necessary, we can practically live in our van if needed!