Day 14 - You Are Not Alone - Apraxia Awareness Day

Day 14 of Better Hearing and Speech Month

You Are Not Alone - Apraxia Awareness Day

This morning, I got up and put on my blue 2012 Apraxia Walk shirt and Bee-bee met me in the kitchen wearing hers and we took our picture and I posted it on FB.  Cha-cha was still sleeping as I left, but his blue shirt was waiting for him.  I brought to school (my work) more ribbons to replenish the ones that were taken in the teacher's room yesterday so more of my coworkers could wear them.  As I was writing my morning message, FB was exploding with messages from CASANA, Apraxia Kids, and the friends I've made who also have children who have Apraxia.  Posts and pictures from friends and their kids, Cha-cha's daycare provider, and friends sharing other statuses about Apraxia, made my heart soar.

Yes, it sucks to have a child who has this neurological motor planning disorder, but the biggest message that I got from today is that we are not alone.  There are other children out there and other moms just like me, who are fighting for awareness and pushing for better treatments and therapies to help our children.  There are some friends who don't even really know what Apraxia is, but today, wearing that ribbon, they supported Cha-cha and what he goes through every day.  Seeing the ribbon on coworkers who work on opposite sides of the building, who I barely see, made me smile and even tear up that they are with us.  They are learning what Apraxia is about and they too want the best for children who have this disorder.  Hearing about how my school psychologist and how she explained to a kindergartener why she was wearing a ribbon today was pretty amazing.  Having a coworker ask me how Cha-cha was doing and progressing made me proud of our efforts.  Seeing my principal explain to our new principal candidate and Superintendent about how our school joins together to support each other, as she was wearing a ribbon and pointing out a picture of "Cha-cha" - priceless.  Hearing Bee-bee explain to her after-school counselor about what Apraxia is and how it effects her brother - amazing.

I feel very fortunate to have such great family and friends - and an extended family and friends in the Apraxia Community.  We may not always agree on what therapy is best or what diet works with our kid this week or what brand of Omega-3 supplements you should/shouldn't be giving - but we're all trying to figure this out - together.  We are not alone.

May 12 - Mother's Day and the "Normal" Stuff

Day 12 of Better Hearing and Speech Month

Mother's Day and the "Normal" Stuff

I've been writing now for 11 days about CAS and how it pertains to our family.  CAS is not the only thing we focus on as a family - there are plenty of other "normal" day to day things that Hubby and I have to juggle  to make our family work.

Take this past week for instance - On Thursday, I had work obligations at a retirement, Bee-bee had ballet class and Hubby couldn't take time off of work to get her there and back.  Thankfully my dad was able to pick her up and a good friend was able to drive her to my work at the end of the party, meanwhile Cha-cha's daycare provider kept him later than usual for me so we could make it all work.  It's a fine balance that any parent has to go through to make the dance of parenting work.  On Friday, Bee-bee had Irish Step, so again, I had to make sure I got out of work on time, to pick her up at school on time, to get her home and dressed, to pick Cha-cha up on time, and then to get to dance on time.  Hubby had a night out with his friends, so I did the bedtime routine.  Saturday was speech for Cha-cha and soccer and team pictures for Bee-bee, a trip to a museum for Cha-cha and my cousin and her son, and then Hubby took the kids out to dinner so I could go out with a friend and he did the bedtime routine.  Of course then when I came home, we were getting ready for bed and Hubby let our dog Buddy outside, and sure enough, he was sprayed by a skunk.  At 11:00pm at night.  I don't think either one of us were happy, or had a lot of patience at that point - but we bathed the dog and I re-washed my kitchen floor and got myself to bed by 12:45am.

Today was Mother's Day.  Hubby had soccer, I had a visit with my sister, the kids and I baked brownies, and later on today we headed up to visit with my parents at their house.  We had some magical moments today - the two kids cuddling on the couch, the kids seeing the magical fairy doors that "appeared" in my parent's crab apple tree, Bee-bee finding money in behind the fairy doors, eating popsicles on the rock with Cha-cha, watching a dog try to swim in a puddle, and Hubby taking Bee-bee to the carnival near our house.  All of these things could be "normal" in any family - special needs or no special needs.

So where does Apraxia fit into all of this?  Well, it's integrated into who our family is.  We had to remind Bee-bee many times not to butt into Cha-cha trying to talk.  We had speech yesterday that sort of turned into a disaster because he wanted a certain toy from Toys R Us that he perseverated on from the night before.  We paused countless times so we could understand what Cha-cha was saying.  We had to translate to Bee-bee what Cha-cha was saying, even though he said it and she refused to listen to him because he didn't say it directly to her. We repeated many times what we thought he said back to us.  We asked him many times to speak up.  We asked him many times to make eye contact.  We asked him many times to repeat 2-4 times what he said so we could try to understand him.  We sat through at least 5 screaming in frustration tantrums today alone.  Do "normal" families have to go through this?  They probably do, just I don't know to what extent, because this is our "normal."

Day 10 - Siblings

Day 10 of Better Hearing and Speech Month

Siblings

If you google search "special needs siblings" you come up with a bunch of really great articles and blogs related to children whose siblings have special needs.  I came across two great sites - Siblings and Children with Special Needs and What Siblings Would Like Parents and Service Providers to Know.

Bee-bee didn't ask for a brother with special needs.  Granted, Cha-cha's special needs are not as severe as others, but Bee-bee's life is a little different than her peers who don't have a sibling with special needs.  For the most part, Bee-bee has been very positive about her brother.  She's even attended more therapy sessions than Hubby thanks to EI before he was three and weekday afternoon speech sessions.  She's attended some doctor appointments and watched her brother recover from surgery twice.  She's heard me talk about my frustrations and she's seen my tears.  She's been the biggest cheerleader to get Cha-cha to say words, and I've seen her throw mini temper tantrums when he can't say something right - especially when it's her name.

In the past year, we've really stepped up and offered opportunities for Bee-bee to do things on her own.  Overnight trips to grandparents' houses, dance lessons, and soccer practice and games have been added into her life to give her space and her own time.  Hubby and I also plan time for her to spend with us one on one and do special things with us so she doesn't feel left out.  She only attends one of Cha-cha's therapy sessions a week (and she's expected to complete her homework during that time).  When she complains, we often remind her that her brother now sits through her dance classes and occasional soccer game.  I've also now made it a point to not have her come to Cha-cha's major doctor's appointments.  Dentist and sick visits are fine, but now that they are both older, he should have the same privacy that she has with her doctor.

There have been some benefits to having a sibling that needs a little bit more attention.  Bee-bee has incredible patience and has had the opportunity to watch specialists and therapists model techniques and at a young age, she could apply them.  When Cha-cha was diagnosed, the doctor told us to come up with a nickname for Bee-bee so that her brother had a name for her so they could interact.  That's how "Bee-bee" came to be.  Bee-bee spent an entire hour in the pool with her brother saying, "Say Bee-Bee" when he wanted her to swim over to him under the water and say "Boo!" when she got to him. Within an hour, he had it down pat.  They were both determined and they did it together.  Within another hour, she had him saying "Ma-ma" for the first time.  All because of her.  We had spent 2 years 4 months and countless therapy sessions trying to get him to say it and it just took his big sister and a pool to get him to say it.  When she was 5 and heading into Kindergarten, she told me, "I don't know if I'm suppose to study my Kindergarten stuff or my Speech Pathology stuff." At 5, she knew the difference between an utterance, an approximation and a word and she knew over 50 different ASL signs. She has the ability to be creative and entertain herself when I'm working with Cha-cha.  On her own, she brought in her "My Brother is Very Special" book to her first grade class and read it to teach everyone what Apraxia is all about.  She's walked in 2 Apraxia walks, and is registered for her 3rd (however, it was a tough lesson to learn that she wasn't going to be directly getting the $250+ she raised for the first walk).

When it is all said and done, I hope that Hubby and I have given her and her brother a "normal" childhood.  I hope that she doesn't dwell on the negatives of having a brother with special needs, but that it teaches her to be more understanding of others and maybe even spark a career in a helping or medical profession.

May 5th - Play

Day 5 of Better Hearing and Speech Month

Play

Play is an important part of a child's development.  You can look up any recommendation from any teacher, pediatrician, SLP, OT, PT, Child Psychologist and they will tell you that.  Play helps children develop skills needed for life.  Watching Cha-cha playing trains right now, he is demonstrating spatial awareness skills in setting up the trains, problem solving when the track doesn't go the way he wants it to go, and practicing scripts between trains as they pass each other on the track.  I'm sure there are more things he's learning by playing with his trains, but these are the ones stick out to me right now.

An early part of Cha-cha's therapy through Early Intervention was all based on play.  Toys were brought in and the goal was to elicit movement and language from him based on his play.  I still remember the SLP desperately trying to get him to say "up" and "down" with a ball maze.  Cha-cha would happily oblige to bringing the ball up when she said it, but we were lucky got get him to say "uh" maybe once or twice in an hour long session at 2 years old.  Now in therapy, it is still mostly play based.  Cha-cha picks toys out of the therapist's closet and she bases his therapy around the games and toys (often at a moment's notice).  It takes a lot of creativity to push him and engage him, but we're grateful to his SLP and her creativity that gets him to work hard towards achieving his goals.

I remember the EI Developmental Specialist exclaiming how advanced our children's play skills were, and I remember her asking me what I did to help facilitate it.  In our house, toys overflow the rooms - especially the living room where we spend most of our time.  To some, our living room is overwhelming with toy chaos, but for our children, it's their creative zone.  The hours they play are building blocks for learning, and they enjoy doing it close to us, but not always engaging us.  I joked that my children learned to play because I ignored them - which really isn't true, but to an extent my children were and are encouraged to play by themselves.  I distinctly remember from my childhood, playing in my room, dancing, singing and creating while my mom cleaned, cooked, or studied in the other room.  It wasn't that her or I are bad parents, we just allowed our children space to be creative.  We definitely do sit down on the floor and play, or work on something together, but they enjoy playing by themselves. My parents limited TV and we didn't have many video games (same with Hubby).  We try to limit TV and ipad screen time, but our children often get bored of TV and would rather play than watch it when it is on.  We also don't have any video game systems in our house.  I have to say, it makes for a quieter household. ;)

Something that Hubby and I also do is we take our children out - a lot. We have memberships to the zoo and to the science museum.  The kids like to hike the small "mountain" near a pond in our city. They love parks and exploring beaches.  When I send in Cha-cha's weekend note to share with the class (listing a good 6-7 events of his weekend), his teacher often comments to me that the thing that he talks about most about his weekend is playing with his toys or playing in the backyard in his sandbox.  Cha-cha looks forward to Saturdays and Sundays (and free weekday afternoons) playing with his "guys" (Imaginext figures), "wobbly-boots guys" (Matchbox Big Boots), playdough, and the Thomas Trains. He will often comment that he has a lot of "work" to do with his toys. Our living room (and the kids bedrooms) may look like Toys R' Us explosions, but great "work" is being done there.

What sorts of things do you do to encourage play in your house?

Apraxia Walk 2011

Yesterday was an emotional day for me...we headed up to another state to walk in the 2011 Walk for Children with Apraxia of Speech.  Our state doesn't have a walk, so I chatted with Sharon from CASANA and she asked if I would like to start one in our area...as much as I would love to not have to drive an hour and 15 minutes out of my way, I don't have the time to do organize a walk.  So instead we headed up and met with over 100 other supporters at a beautiful park on the ocean.  It was comforting to know that there were other kids just like "Cha-cha" (what our proud son now calls himself - a wonderful nickname for the blog instead of "Little Man").  There were parents, siblings, and family members there who had been through the same stuff like us - the testing, the waiting, the therapy, the tears, the cheering, the tantrums, the questions...very overwhelming.

We had some wonderful family members there to help support our "Chatterbox" team - Hubby, Bee-bee and Cha-cha, Nana-bee, Great Auntie J and Uncle P and their dog, Pepper (or Pep-pep as Cha-cha calls her), Gramma and Grampa K, and Auntie K and our cousins V & E.  It was great that they could all join us!

At the beginning of the walk, Cha-cha grabbed my hand and started off...and a beautiful monarch butterfly flew over us and that's when I pretty much started to lose it...butterflies and bees appear at very random, yet significant times of my life (I'll never forget seeing a bee in Bee-bee's nursery a week before she was born - in December, or having a bee go up my veil on my wedding day and to have a butterfly land on my wedding bouquet an hour later)...of course I would lose it again at the end when they read the book, "My Brother is Very Special" - I book written from a sister's point of view about her younger brother with CAS.  Hearing about how kids don't want to play with him because he can't talk, hearing about the obstacles the brother has to face - like other kids taking away toys because the brother can't tattle, going to therapy instead of football practice - this is the long road ahead of Cha-cha. (Although secretly, I'm excited that this could coincide with football and he won't be able to play)  It was good to hear from other parents who are also working through their struggles of accepting and dealing with CAS.

The mile walk itself was pretty uneventful - lots of bright orange shirted big and little people walking, running, biking, riding in wagons and strollers, going around a beautiful common by the ocean.  Bee-bee pushed her stroller with her baby Jewel and Cha-cha pretty much walked and ran the whole thing with only a short neck and shoulders hold-y from Daddy.  I think his favorite parts of the day was collecting rocks, going down the twirly slide and digging in the sand.  I don't know if he knew we were walking for him, but later on in the day, I asked him my routine of questions..."Who's mommy's boy?"  "Me!" he yells..."Who does mommy love?" "Me!", I glanced at hubby before asking the question I've never asked before and asked Cha-cha, "Who has Apraxia?" and he beams and yells, "ME!" 

Cha-cha walking - he wanted to show off his new digger shirt instead of the Apraxia orange one :)

A touching moment for me was observing the mothers of the children with CAS.  Despite the fact that their child has difficulty speaking, the mothers are very in tune of what the child's needs and wants are...I met other mind readers like me!  One of the coordinator's son, who has CAS, was fussing and someone called out, "What's wrong?" and she knew that the little bit of marker on his hands were bothering him.  Another mother who was speaking in front of all of us just glanced over to her son and said, "Can someone please take him to the bathroom?" into the microphone.  I don't want to take away from the fathers or other supportive family members - but mothers always have a sense of intuition - even if your child doesn't have a disability.  Thankfully, that intuition kicks into high gear when you have a non-verbal child and you start to possess that mind reader-rockstar quality to the 10th degree.

It was a beautiful day...I appreciated spending time with our family, taking in the fresh air, and seeing other families just like ours. 

Thank you to all of you who made donations on our walk page - I was actually the third place "winner" of the most donations...the Chatterboxes were the 4th place team over all!  CASANA will use most of that money to train SLPs, public schools, and other professionals about Apraxia and how to help treat children who have it.  Sadly, many SLPs do not have the proper training in the techniques to help children with Apraxia.  CASANA hopes that not only can we find a way for kids to not have apraxia, they also want people to be educated about it and know how to treat it.  Thank you for your support.

The Last Weeks of Summer

We've been busy with summer winding down...I figured I'd post some pics of what we've been up to...

Childhood Apraxia of Speech

We came home from our little vacation up in Maine today and in our mailbox was the final paperwork from the Children's Hospital we took Little Man to a few weeks ago.  In black and white, it stated that he does indeed have Childhood Apraxia of Speech (CAS) as well as Temperament variation vs. Regulation Disorder: Hyposensitive/Underresponsive subtype...basically in real language - he knows what words are - he hears them - he knows things have words, however he can not produce them right now.  It's a motor planning disability where he can not get his brain to function to his mouth, tongue, lips, etc to produce the sounds that make the words.  The second diagnosis...well, he's laid back, easy going, and passive - if he doesn't make the sound, for him it's not the end of the world...in a classroom setting, he'd be seen as the "good" kid who doesn't talk out, doesn't call attention to himself, doesn't mind if he doesn't get his own way sometimes...he's always been our "good" baby - quiet, good eater, good sleeper, happy-go-lucky...and this sort of explains his passiveness.  The combination of the two is tricky - basically, he isn't motivated to make the sounds and would rather let others do it for him or just walk away completely.

So, what does this all mean?  We're not 100% sure right now.  He's going to get a ton of speech services.  Right now, he'll get 2 hours of speech a week from Early Intervention and an hour from a developmental specialist.  The specialists at the hospital want him to also have OT at least once a week and possible outside speech therapy an additional 2-3 times a week.  So we're talking possibly 5-7 appointments of therapy a week for our little guy.

Some things I do know and people who I know and love have been giving me a ton of advice, and I hate to be frank and vent - but this is what it does mean...I do not know when he will talk in complete sentences.  It's not going to just "click".  There is no instant cure for this.  We have no prognosis, except that with therapy it will get better, we just don't know how much better.  He's not going to "just talk when he's ready."  I don't want to hear from people who has a second cousin twice removed who's kid didn't talk until he was three and then started talking in complete sentences shortly after his 3rd birthday.  He may not be "typical" and potty train at 3.  He is going to grunt and point and DO NOT GET FRUSTRATED when he does this.  It is his current means of communication.  Feel free to try to get him to produce a sound and encourage him, but if he's frustrated he may not look at you and he may walk away.  His tantrums may look different from your kid's tantrums, but just because he's not yelling or screaming, he's frustrated and he's showing it in the way he can (even though it's nice and quiet). 

The past few days, I really thought about this - and any time I think about it, I cry...I guess I'm grieving through all of this - which is insane because it's not like he has a disease that will kill him - but when you hold your little baby in your arms, you have a picture of what things are going to be like and after 28 months, it's not completely what you pictured.  I look back at Big Girl's toddlerhood and much of her time was all about her talking and communicating with us.  It's difficult to hear silence from Little Man - people who know me know I love to talk and I love to hear others talk...it's frustrating to be with someone and not know their emotions because they can't verbalize them.  Yes, I can tell when he's happy or sad, but I don't know why he's happy or sad.  I can't ask him, "What would you like for dinner tonight?" without displaying predetermined pictures or prompts while I wait for a smile and a head shake.  Little Man is such a great eater - I would love to ask him, "What's your favorite food?  If you could have anything you want for dinner right now, what would it be?"  I can guess that it's spicy Mexican rice, or pasta, or chicken dipped in ketchup - but I can never be 100% sure.

We do know is that he's a very smart little boy - and I have the paperwork to prove it ;) He loves his family - especially if you are a male in this family, he will follow you around to learn everything you do - if you have a screwdriver in your hand, even better!  He loves trucks - his first word was "ruck" and you can hear him say it almost any time he sees one.  He loves our dog Buddy - he loves to cuddle him and kiss him and snuggle him, and thankfully, Buddy loves him back.  He worships his big sister - he will seek out her toys and want to play with her whenever he can.  He blows the biggest kisses and gives the fiercest hugs around the neck.  He loves life - he wakes up every day and doesn't know what's in store for him and he takes it all in stride to the best of his ability.  He has a great team of people who are going to advocate for him and be his voice until he can find his own.  He has parents who will fight for everything we can possibly give him so he can be successful.  He has the best big sister, who I know will look out for him and be his therapy buddy (whether he likes it or not). :)

Updates...

Man, it's been a while - we've been super busy with life - and enjoying every minute of it!

Here are a few pictures of what we've been up to:

Birthday parties:




Visiting relatives:




Being Silly:









Haircuts:

Before:


After:

Sheep Shearing Festival!

Today we went to the annual Sheep Shearing Festival a few towns over. It's always a big hit with sheep, goats, alpacas, chickens, and any other barn animal that is easily transported. It's held on beautiful grounds with an old 18th century mansion. Little One loved the big hills that she could roll down, as well as watching the herding dogs. Here are some snapshots of our day:

Beautiful day:


Little One drinking milk:


Dancing to the blue grass music:


Eating strawberries:




Rolling down the hill:






Mommy and LO being silly!

Boston, Here She Comes!

We took LO to Boston today to the circus. She did really well there, until the second act when she had to go potty and she peed on Daddy. Oh well - but she did tell us she had to go potty, however it was after she peed. Other than that, she's been really good today.

I think she was disappointed that there weren't more animals at the circus - they had dogs and horses, but that was it - the rest were really cool human tricks, but LO didn't think they were so cool...

After, we decided to walk around Fanueil Hall - it was such a beautiful day and there were many Boston Marathon runners sight seeing with their families. LO was infatuated with the drain covers. She kept running, jumping and standing on them.

Here is our Red Sox/Thomas Fan gearing up for the trip:


In Fanueil Hall:


Drain:


Looking at the toy store:


Drain:


Mid-air:


Drain:


Tired, waiting for the train:


Looking at the trains with Daddy:

The Farm

Hubby and I took Little One to the farm the other day to show her all the baby animals - there were lots of baby sheep and some very pregnant goats. We also go to see a skunk up close (don't worry, it was de-scented) and LO kept saying "pee-you!" to it. The highlight of her day though was getting a little green tractor from the gift shop. She was insistent on making it go on the "gate" and seeing if there were any tunnels (holes in the fence) that it could fit through.

Daddy and LO:


The baby sheep:


The Tractor:


Looking for a "tunnel":


"It won't fit Mommy!"


Concentrating hard:

Easter Bunny?

So this morning hubby was busy getting LO ready for daycare. They were doing their usual stuff - getting dressed, eating breakfast, walking Buddy...then LO kept saying, "I want to go to the Mall with Buddy." Hubby kept asking her why - to go shopping? She kept saying, "No!" Finally, she told hubby this, "I want to go to the mall with Buddy to see the Easter Bunny." Hubby asked if she could just show him the Easter Bunny on the computer, but she said, "No" - it had to be the mall.

So what does hubby do...he takes her AND Buddy in the car to the mall (at 8:30am mind you), and they get out of the car and he pretends that the door won't open (not to mention that the Easter Bunny is long gone and she didn't like seeing him from a distance - never mind up close!). So he convinces her to go back to the car, where she says, "I'm sorry Buddy. You didn't get to see the Easter Bunny."

I don't know what is more cute - her yearning for Buddy to see the Easter Bunny or hubby taking her to the Mall. :) God I love this guy!

Cherishing the Moment...

We've had lots of sickes going around lately - mostly just hubby and I - thankfully LO has been spared except for a runny nose. We've also been busy with work, the house and life - but most of all, we're just trying to cherish the moments we have together as a family...

Take tonight for instance - Daylight savings has completely thrown LO off - she napped from 3:45-5:15 and then after dinner, we decided to give her a quick bath and then watch Ratatouille for the first time. LO had other ideas - she took her tubby and refused to get out - so I just went with it. We drained the water and I let her play with her little ponies. Then she pooped in the tubby and thought it was the most hysterical thing in the world. Eventually we bribed her out, wrestled her into her horsie pj's, and settled in on the couch. I'm sure we all missed parts of the movie, but we had fun doing it. I was trying to dry out the ponies. LO kept wondering where the "mouse" went when he disappeared off the screen. Hubby decided to try my tofutti ice cream sandwiches, which prompted LO to want one. She was so cute licking it and making a mess. She lasted through the whole movie all the while either laying, jumping, and cuddling on us.

There are a few of these nights in my life that I will always remember - not because anything major happened specifically, but it was just the joy and happiness we shared as a family that means so much to me.

Aquarium

A couple of weekends ago when LO was feeling better, we took her to the city to the Aquarium. This place has special meaning for my hubby and I because that is where we had one of our first dates and it's where he proposed to me. :)

LO loved seeing the penguins and seeing all of the animals that are related to the beach and ocean.

Here is Daddy and LO pointing at the big fish!


Trying to "tickle" the little fish:


Playing in the tide pool with mommy:


With daddy looking at the big tank:


Wow! The turtle!


Double Wow! Two turtles and a guy in the water!


These are penguins mommy!


Look!


Loving some more turtles:





(She wouldn't let us buy her one - she just wanted to hug them all - lol!)

Playing outside with the seals!


Trying to see if she can run as fast as the seals can swim!


She's a blur because she's running "super fast":




What a fun day! :) It will be nicer when it's warmer and we can walk around more. :)

* Oh, and LO almost got a marriage proposal because she was wearing her Thomas dress! lol - One mother commented, I think I found my son's future wife! LOL!