6 Month Wait

Our doctor's appointment last week went ok, however the developmental pediatrician feels that Cha-cha may have an additional diagnosis.  It's been on the back of my mind for some time now - the anxiety, the rigidity, the increase in noise sensitivity, the lack of flexibility, the decrease in eye contact - I will see one of these in him and say, "Is it?" and then he will do something right and I say, "No, can't be..."  In speaking to people who are close to Cha-cha, a few have said that they are not surprised at this possible diagnosis and that they suspected it as well.

Close friends and family are have been asking me, "How do you feel about this?" or "How are you doing with this?" and I honestly don't know.  I do know that we will deal with whatever is thrown at us, and we will continue to advocate and fight for what Cha-cha needs to be successful. I'm so lucky to have my husband by my side to keep us grounded in whatever decision we do need to make for both of our children.

I appreciate the doctor not jumping to conclusions and saying that she wants to wait another 6 months to make sure before she gives a definite diagnosis, but in the meantime she said she wouldn't change anything that we're currently doing for Cha-cha.  We've increased his speech therapy this year and this summer he'll be going to a social group at his SLP's office with 3 other boys. We will continue to work with him and hope and pray that this is just a phase, although I don't know if it is. We have plans to look into getting Cha-cha a neuropsych evaluation in the fall, in hopes that it gives us more answers and clues to what is going on with him and what learning styles he will be the most successful in using.

It's hard to hear and come to terms with your child not being "perfect" or at least "neurotypical" - What we keep reminding ourselves is that Cha-cha is a character - he is happy, smart, super cute, and funny.  Surprisingly for a kid they said may not talk before 5, he has a way with words and saying what's on his mind. I'm so thankful for the hugs and kisses he gives and his little made up jokes.

End of the Year for Cha-cha

Today was Cha-cha's last day of school for the 2012-2013 School Year.  He had a fantastic teacher who will be retiring in October. She has been great for him and we will miss her.

Getting ready to hand Cha-cha his portfolio.

I thought we were making good time, but we walked in as everyone was already sitting down in their chairs.  Cha-cha froze and wouldn't leave my side, even when his super nice para came over to walk him to his seat.  So I went with him and sat behind him, where he spent most of his time turned around staring at me, grabbing my hand, or looking at the floor.

Singing the See You Later, Alligator Song - I don't even know if he moved his lips.

He refused to do his job - the honor of cutting the last paper chain down to symbolize the last day of school. Something he's been waiting for now for weeks now. Instead, he let his good friend cut it for him. I'm very grateful to the sweet little girl for being his friend.

\

Eating his watermelon. 

He participated in washing his hands, snack (although he sat by himself because there were no more chairs at the table), and two rhythm stick songs, in which he yelled out to his teacher after the first one, "We do other one!" She smiled at him and continued to the second song.

His Self Portrait from September (Left) and June (Right).

So in all, it was very bittersweet.  I'm so proud of our boy for making so much progress, however it was so noticeable today that his anxiety gets the better of him in large, social situations.  It was also noticeable that he's not where the other kids are in terms of his speech and language, especially with his cadence and pronunciation.  He's come a long, long way, but he still has a tough road ahead of him.  Seeing him with his peers showed me how "different" he is than all of them and it's so hard to accept that. I'm grateful for a wonderful parent of a former student of mine and a coworker who took the time to just let me cry and listen to me when I got back to my work.

He will get there; we will just have to take different, longer paths to get there.

As we left his school, Cha-cha asked in his garble, "I get my end of the school year prize tonight?" to which my former student's parent let me know that comment is completely age appropriate, which gave me a chuckle. ;)  

Tonight, when Cha-cha was going to bed, I told him, "Are you happy that today was your last day of school?"

He responded joyfully, "Yeth, now I get to pway width aw my to-oyz." (Yes, now I get to play with all my toys).  Typical 4 year old response, right? ;)

We haven't told him he goes back in 2 weeks for summer school...eeek!

Questions

On our way to speech therapy this morning, Cha-Cha asked in his drawn out garble, "Momma, what happened here two years ago?"

Wow. I didn't know what to say, so I said what was on my mind... "Two years ago, you couldn't talk. You had mommy very worried. But now you can talk and it doesn't worry me as much anymore, because you work very hard."

He responded, "I don't remember that. I only remember you singing me good night songs."

How I wish I could always see the good things through his eyes all the time. :)

He then asked me, "How does my food go from my mouth to my bum?"

So much for reflective questions! ;)

Day 15 - Celebrations

Day 15 of Better Speech and Hearing Month

Celebrations

So as a parent of a child with Apraxia and SPD, there are things we celebrate.  Just today, I celebrated the fact that Cha-cha is now yelling when he's frustrated.  Yes, at 4 years old, I'm excited that when he's frustrated (mostly with his sister), he stops what he's doing and yells.  To some that is just an annoyance, but to me, it's music to my ears (well for today maybe).  Usually he's very passive and agreeable (thanks to the underresponsive SPD), but seeing him branch out is great.

Also, today I celebrated the fact that my progress meeting with Cha-cha's school actually went well.  They handed over the IEP amendment with no issues, I signed it and handed it back. I heard great reports from his teacher, new SLP, OT and PT.  They commented that now he has consistent speech and a consistent schedule, he's doing really well adjusting.  It was nice to hear good things from his TEAM.

And tonight I celebrated being a mom at dinner with some friends.  I love getting together with women and talking about being a mom.  It's the most challenging job you will ever do - more challenging than being a full time teacher. There are so many balls we have to juggle as a mother and it's a miracle that we are able to do it all.  So while you celebrate your kid's accomplishments, don't forget to celebrate your own. :)

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.

Day 13 -Get Ready!

Get Ready!!!

Tomorrow is the first Apraxia Awareness Day! I passed out ribbons to coworkers and our blue 2012 walk shirts are ready for tomorrow!!!

Woo-hoo!

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 11 - Getting Ready

Day 11 of Better Hearing and Speech Month

Getting Ready!

I just printed out 100 Business Cards and I'm getting ready to cut ribbons to attach so I can pass them out to family, friends and coworkers on Tuesday. I don't think Cha-Cha has a clue what it's all about, but I'm excited to be a part of helping others understand what Apraxia is. :)

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 9th - Terminology

Day 9 of Better Hearing and Speech Month

Terminology

Today I found this on the Apraxia-Kids FB page and I edited it to put Cha-cha's picture on it.

It suits Cha-cha perfectly.  "Apraxic" isn't an adjective that I use to describe him.  It bothers me when people call children with apraxia, "apraxic" - many people (including parents of children with CAS) use it, but to me, it stings.  It's not that I haven't accepted that my son has this challenge, but he's so much more than that and I'd rather use other uplifting adjectives to describe Cha-cha than "apraxic".

May 8th - Awareness of CAS

Day 8 of Better Hearing and Speech Month

Awareness of CAS

Back in my undergrad days, I was a Speech Language Pathology and Audiology major (Ithaca College '99). Something in me decided to pursue regular education for my masters degree and my profession, but I considered myself to be pretty knowledgeable about speech therapy. In all of my wonderful classes, I do not recall CAS being touched upon. I had heard of apraxia in adults or in people who had suffered strokes or brain damage, and I had even observed an adult's (who had apraxia) therapy sessions with graduate students. However, I never heard about apraxia and kids.

Fast forward to January of 2011 and I was sitting on the living room floor with Cha-Cha and his EI SLP. She looked up at me and said, "I don't have a lot of experience with this, but I really think he has apraxia." I remember saying to her, " But he doesn't have a brain injury." That was when she shared with me that apraxia can also be from birth. I then threw myself into google searching and reading about apraxia from the apraxia-kids.org site. I searched for SLPs and doctors who specialized in Apraxia. Eventually, we sought out testing from a big city hospital to get the big picture of what was going on with our Cha-Cha. The results showed that CAS was the primary factor.

So, when we started telling people about apraxia, I got a lot of strange and blank looks. Many kids do not have apraxia. There are different theories on what causes Apraxia, but no definite hard evidence.  I had some people ask me, "Do you mean Autism?" Apraxia is not a familiar term when associated with children. As a teacher, I had never heard if it in my 12 years at a suburban elementary school. When I've posted about it on Facebook, friends don't know what it is- and some think it means that Cha-Cha can't talk at all and are surprised when they hear him. Even Cha-cha's pediatrician had only encountered one other child with Apraxia. Many SLPs don't have experience in dealing with children with Apraxia unless they have studied under the Apraxia God of Edythe Strand and her partners in research.

So where can a person go to learn about Apraxia? The best place to start is www.apraxia-kids.org. It is run by CASANA - Childhood Apraxia of Speech Association of North America. It was created by Sharon Gretz in 1997. Sharon is a parent of a child with Apraxia and when her son was diagnosed, there wasn't a lot of information for parents. Since then CASANA has grown to include:

• Apraxia Boot Camps for SLPs, a yearly national conference for SLPs, educators, parents, doctors and whoever would like more information on Apraxia 
• webinares for professionals
• a registry of children diagnosed with apraxia for research purposes, 
• diagnostic, treatment, and research programs 
• a system of fundraising and awareness through Apraxia Walks throughout North America so that many of these programs can be offered for reasonable rates.

Another great resource is the book "Speaking of Apraxia: A Parents' Guide to Childhood Apraxia of Speech" written by Leslie Lindsay. Lindsay is a mother of a daughter with CAS and she is also a nurse.  She wrote this book to help other parents who are going through the diagnosis and trying to navigate therapies and the course of what to do next. Not only did I find it helpful, but my mother (Cha-cha's Nana) found it helpful to understand what our family was going through.

If you are looking for printouts you can pass on to family, friends, teachers or anyone who wants to know more about CAS without reading a book or going through a lot of information, CASANA offers a variety of printouts on their website.

CASANA is also having the first ever Apraxia Awareness Day on May 14, 2013.  You can find more information on their website. Our family will be celebrating by wearing last year's walk t-shirts and giving out blue and gold star ribbons with a card that explains what Apraxia is.  Here are some additional ways you can participate in the Apraxia Awareness Day.

May 6th - Hearing

Day 6 of Better Hearing and Speech Month

Hearing

Cha-cha's diagnosis does not current include any issues with his hearing, however it hasn't always been that way. Back when he was 6 months old, he got his very first ear infection (a double and it happened to coincide with my return to work). He showed no symptoms except for a low grade fever. No crying, fussing, red ears, runny nose...it was very strange. He continued to get 6 double ear infections in 5 months. So much that we know that his hearing was distorted, but not sure exactly how much. At 11 1/2 months old, Cha-Cha had surgery to place tubes in his ears to help drain fluids, and they worked. After a while, one fell out and later that ear ruptured form another ear infection. It was then Cha-Cha suffered from a moderate hearing loss. Thankfully, his ear drum repaired itself and his hearing was restored. To this day, we don't know how his temporary hearing loss directly impaired his speech, however it definitely could have had some impact.

When children are having difficulties with their speech, one of the first things that should be looked at is their hearing. An audiologist can perform a comprehensive hearing test to rule out any hearing loss and an ENT can be consulted if your child has excess ear infections. The surgery of putting tubes in is quick and relatively painless, and took about a total of 10 minutes under gas anesthesia. It was an easy fix for Cha-Cha and it greatly helped in cutting back his ear infections and the amount of times he needed antibiotics.

Not a very inspiring post tonight, but I'm tired, I administered state testing today, and have been trying to do 10 things at once. I need to find a way to triple clone myself this week...

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?

May 4th - Saturday Therapy

4th Day of Better Speech and Hearing Month

Saturday Therapy

All across New England, parents are scurrying to get their children to extracurricular activities. Soccer fields are surrounded by minivans and SUVs, parents are helping their little kids carry hockey bags as big as them, kids are suiting up in their bathing suits for swim lessons, kids are warming up and stretching for gymnastics or dance class, and here in the building Cha-Cha goes to speech in, kids are running up the stairs for Chinese School, Russian Math, and some form of Japanese music lessons. Instead of doing these things with Cha-Cha, we are in the small minority of parents who bring their children to Saturday therapy. In the waiting room are parents who just can't get their kid to another session of speech during the week. Sometimes, if I think about it too much, it can get depressing.

Our Saturday starts with a routine. Hubby and I hear the kids stir around in their rooms and we hear demands for strawberry milk and the I-pad. Hubby is usually the one to help them get settled for a bit so both of us can get a few more minutes of shut eye. By 8:00am, we are scrambling to get everyone ready, as Bee-bee and Hubby head to soccer and Cha-Cha and I head to speech. I have to make sure we leave at least 30 minutes early so we can get Cha-cha's favorite breakfast - McDonalds Hotcakes. We head through the drive thru, I park and cut them up, and magically blow on them to cool them off, and he manages to eat all three by the time we hit the parking lot at the building speech is in.

Cha-Cha typically is "neaky-neaky" (sneaky-sneaky) and takes his shoes off during the ride, causing me to have to put them back on, gather our bags (in case he has an accident and so I have something to do for the hour), and head into the building. Racing around us in the parking lot are other kids trying to make their various lessons in other parts of the building. Cha-Cha always insists on taking the elevator. He gets to press the buttons and gives me a big smile at the little independence of being able to be in charge of where we go. On Saturdays, he gets to run down the hallway since no other offices are open on the floor. It helps warm him up for therapy. When we enter the waiting room, we are greeted by other parents and their children.  We smile and make nodding glances, occasionally exchange a comment or two, but it's the same group of us Saturday after Saturday.  After a few minutes of play time on the train table, his SLP greets us and takes us back to her office.

His therapy varies with his targets, but I think Cha-Cha secretly likes it because he has almost any choice for what he wants to play with during therapy. We've been doing this now for almost 2 years now and his SLP often says seeing him on her Saturday mornings makes her entire day and Saturday therapy sessions worth it. Because of Cha-cha's separation anxiety, I get to accompany him by sitting on the floor, minding my own business, and observing.  When he feels he's getting pushed too hard, he will ask his SLP to get a squeeze from me or a few jumps on the trampoline outside her office.  It's always over in an hour and by then he's worn out and ready to go.  My rule after therapy is that we have to take the stairs down to work on alternating his feet as he maneuvers the steps.

We do Saturday therapy because it fits our schedule (we also do Monday afternoons). It gets us up and moving and out of the house by 8:30am, but it also gives us another afternoon during the week to let the kids be kids.  Bee-bee does dance and soccer, and Cha-cha does therapy.  I keep searching for something for him to do for fun, but most classes for his age are at the same time on Saturdays - and even though it's work, he definitely looks forward to his time with his SLP and all of her toys. :)  Someday, I hope we can trade in the therapy for something he gets to choose.

May 3rd - Coexisting Issues with Apraxia

Day 3 of Better Hearing and Speech Month
Coexisting Issues with Apraxia

“Pure” CAS is when no other speech, language, cognitive, or sensory issues coexist with the disorder.  The professional literature states that “pure” CAS is very rare.  A child with CAS may also present with other motor planning deficits.  Limb apraxia refers to motor planning deficits relating to arms, legs, fingers, etc.  Global apraxia refers to motor planning deficits with all of the above.  Children with Apraxia can also be diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder, ADD/ADHD, various genetic disorders, low tone, learning disabilities, cognitive disabilities, etc.  The list can be endless.

We are lucky that with Cha-cha, his Apraxia is his primary diagnosis, however he is not considered "Pure" due to his Sensory Processing Disorder (under-responsive subtype) and hypotonia (low tone). These coexisting issues can interfere with treatment and the approach therapists take in treating the apraxia.  With Cha-cha, it takes a lot to motivate him to practice and do his therapy.  I remember his EI SLP coming in with a bags of new toys and games and he took one look at her and her bags, turned his head and said, "Ugh!" and walked away.  Often in therapy, when things get overwhelming for him, he will turn to me for a squeeze or tight hug.  We use to do brushing therapy, but we found that he didn't need it as much anymore, and we could do some jumps, running up and down the hallway, or tight squeezes instead to get his motor going.  His SPD makes him quiet in nature and plays into social anxiety, so it's hard to get him to talk sometimes when he's feeling anxious.  This typically happens in social gatherings where he's around a lot of unfamiliar people.  We are lucky that he doesn't tantrum much - most of his upsets are over things that would upset most children, however he has things he doesn't like at all like hair washing, toe nails cut, wearing no socks, and brushing his hair.

Just today I had the honor of taking a tick off from him.  This is not easy with any child, but with Cha-cha to talk sense into him that the cap full of "water" (rubbing alcohol) I was going to pour on his head wouldn't get into his nose, eyes, ears, or on his shirt, took about 10 minutes.  I accidentally pulled some of his hair out of his head with the tweezers trying to get the tick out, and you would have thought I was torturing him.  Tonight he pooped in his pants and needed a tubby.  His immediate response, "Doe you haft-oo doe a air washin? Are dey bugs in de tubby?" (Do you have to do a hair washing?  Are there bugs in the tubby?)...he gets over things pretty quickly, but I think this one is going to take a while. :( Most of this can be categorized as normal in any child, however it's hard to know if this is "normal" or "Cha-cha normal". 

Any child is a puzzle, but when you throw in diagnoses, it puts more pieces to the puzzle and it just takes a little longer to figure out.  

May 2nd - What is CAS?

Day 2 of Better Hearing and Speech Month

What is CAS?

Childhood Apraxia of Speech (CAS) is defined by the American Speech and Hearing Association as a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.  

What does CAS mean for Cha-Cha?

"Imagine if you will, a little boy who has a dream, a dream to communicate. He wishes he could answer your question so that you understand his response. He wishes he could ask for clarification when he doesn't know exactly what you want him to say or do. He wishes to connect with his friends in their verbal play or to raise his hand in eagerness to answer his teacher. Because in his mind, he knows what he wants to say, yet he just can't get it out. Imagine this little boy is yours." - from the new book Speaking of Apraxia. A Parents Guide to Childhood Apraxia of Speech by Leslie A. Lindsay R.N, BSN


Cha-cha has only known CAS before we even know he had it.  Cha-cha and CAS at 2 was very different than Cha-cha and CAS at 4.  He's gone from severe CAS to moderate-mild CAS in 2 years.  What it means that he attends an integrated preschool in our city with neurotypical peers and other special needs children 4 half days a week. During that time, he gets direct speech services from a SLP 3 times a week for 30 minutes.  Due to his low tone and gross motor planning issues, Cha-cha also gets Physical Therapy 30 minutes a week.  During the school day, he participates in structured and unstructured activities to engage in social interactions with peers.  As you can imagine, it is very difficult for his peers to understand what he is trying to say during their play. In addition to school, Cha-cha participates in private speech therapy 60 minutes, twice a week.  We spend a lot of time invested in helping him communicate effectively.

Cha-cha is able to communicate his wants and needs with his family fairly well.  We have difficulty understanding him if there is background noise, if his back is towards us or if he is in another room. We have to be patient to listen to him and his drawn out speech. We often have to ask him to repeat himself or we have to ask questions to clarify what he is saying.  Bee-bee tries her best to be patient, but at least a few times a week I hear her say, "Blah-blah-blah" if she can't understand him or if he talks over her. Often, hubby and I will look at each other and try to repeat what he has said so we can make sense of it.  Now that he's older, he wants to talk about things that are not in context (for instance, a conversation about houses in the woods with fires in them was him trying to talk about Native American Wetu's - yes, that took about 2 days to understand what he was talking about). He's come up with strategies to use other words to describe what he's talking about if we can't understand his words. Sometimes, he will just give up, shrug and walk away, but thankfully most of the time he is pleasantly persistent.

Cha-cha is a quiet boy - mostly by nature, but I feel that he is very introspective.  At a young age, he would use those big blue eyes to soak it all in.  He doesn't miss a beat and as he's gotten older, he comes up with one liners to go with his beat. When he wants your attention, he starts conversations with "Let me tell you a story..." or "I need to tell you something..." or "I need to ask you a question..." (of course it's in his southern drawl/British/French weird accent). He is definitely more vocal when he has the attention of a very familiar adult or if he is in the car and we can't see his face when he's talking (making it more difficult to understand him while driving). I've found that practicing his language works best when we're not at home, but at a new environment like a zoo or a museum where he has lots of questions to ask. He shies away from kids his age. Most four year olds don't have the patience to wait and listen, or ask him to repeat his words. Cha-cha often has grandiose plans in his play that can be difficult for other children to access (for example, most kids just build towers or maybe buildings with blocks - but Cha-cha makes construction sites to build bakeries and a bank nearby to borrow the money to pay the workers...).

Cha-cha doesn't know anything different than who he is.  CAS has always been a part of him. He definitely gets frustrated at times and can get burnt out of therapy or practice if his limits are pushed.  It falls upon his team to help him achieve goals and push limits. Thankfully, he redirects easily and is often comforted by cuddles or deep pressure squeezes. Cha-cha is often happy and content. He gives the best hugs and sloppy kisses around! ;)

For more information about CAS, please look at the ASHA website or www.apraxia-kids.org 

May is Better Hearing and Speech Month!

I've taken almost a year hiatus from my blogging and I'm feeling the urge to bring it back again, and why not?  May is Better Hearing and Speech Month! 

In honor of our Little Man, Cha-cha, I will be challenging myself to write every day about our experiences of helping our son become a better communicator, despite having Childhood Apraxia of Speech. 

Check back tomorrow to see what kind of progress he's been making!

One Year Later

Hard to imagine that a year ago, Cha-cha had his big evaluation in Boston and Hubby and I were waiting for the results of that eval.  We knew in our hearts that it was Apraxia.  We were told by EI that was what they thought was going on, as well as his ENT who had said he would be surprised if it wasn't.  As much as we were prepared to hear those words, you can never be prepared enough.  The blow stings.  The dreams you have for your child seem to fall down around you.  You get angry, you grieve, you get sad, you beat yourself up about the could haves, should haves, would haves.  Then somewhere, somehow, you brush yourself off and do what you know.  You love.  You learn.  You help.  But you always go back to love.

We've grown a lot in the past year.  I've learned to be a better mother and a better teacher.  We've read and started talking to others who have children who also have Apraxia.  We raised money for CASANA.  We registered for the National Conference.  We sat and tried to be patient with Cha-cha as he struggles to tell us his story and we tried to figure it out.  We sought out new treatments, we graduated from EI and were introduced to Special Education in the Public Schools.  We found a fantastic, young Speech Pathologist, who will adapt sessions in anyway that will get the most attempts at language for our Cha-cha.

Then there are the ways that Cha-cha has grown.  He is now 3yrs 4 months and a mini giant at 3feet 5 1/2 inches and 45 lbs.  He can now touch the bottom of the shallow end at most pools. :)  A year ago he had 7 utterances with no words for mommy, daddy, his big sister or himself.  He can now say Mommy and Daddy, along with Bee-bee's correct name and he can say his first and last name (last name is still garbled, but I'll take it).  He can now speak in long 4-5 word phrases and has even gotten up to an 11 word sentence!  In context, the three of us can understand him about 85% of the time.  Close family, about 60% of the time, and strangers anywhere from 25-40%.  When people who have known him since he was younger see him, they are completely amazed at his ability to communicate and his desire to communicate.  Sometimes, they are completely shocked - I know, I can read their faces. ;)  He has come so far, but there is still a way to go.

We have some new challenges to add to our plate.  Not as significant, but big enough that need to be addressed.  Cha-cha's SPD gets in the way of some things.  He has low muscle tone and the developmental pedi believes that he has issues of gross motor planning that comes from the Apraxia.  He has always been very cautious and deliberate with his movements, but it's now effecting him more in the areas of playing on the playground, manuvering stairs appropriately, and joining in with other kids with age appropriate games.  The PT at school is also concerned and has picked him up for weekly sessions.

He also has a lot of anxiety going on - mostly separation anxiety.  He won't separate from us in his therapy sessions.  I don't have to say a word, he just wants to make sure I'm there sitting in the corner and present.  His Tiny Tots Camp this week was close to a nightmare.  He was the only kid who would not separate from his caregiver.  I even had Bee-bee stay inside the fenced-in area with him, but he screamed and cried.  I did the whole walk away and leave him and it was worse.  He would only participate if I held his hand and the game was Fishy, Fishy, Cross my Ocean, Simond Says or playing the parachute.  After thinking about it, those are the things he's comfortable with.  He isn't comfortable kicking, throwing or catching a ball.  He isn't comfortable with new people (even though the counselors are fantastic!).  Too much chaos is overwhelming for him.  He spent a lot of time watching the other kids playing and being content by that.  I can imagine that he's anxious about having to talk to other adults if one of us aren't around because of his Apraxia and his demeanor (kids are easier for him to talk to).  We will continue to work with this - more playdates and playgroups, more trips to the park, more ball play in the backyard and more stair climbing. 

It's been a long year - long but good, and a productive one for him.  He really is a delightful little boy who still gives the best sloppy kisses and the fiercest hugs around. :)

Almost the End of the Year!

Summer is just around the corner - we can taste it!

This is the time that I count down the days and I wake up in the morning praying that the day before was the last day of school.  I really can't complain as I only have 8 1/2 days left, but oh, I can't wait! :)

Cha-cha finishes school this Thursday and his Open House/End of the Year Celebration is on Friday.  He's made a lot of progress since his start on February 27th, but he still has a long way to go.  We met with his teacher and therapists on Wednesday, and they are going to pick him up for more PT as he hasn't made as much progress as we had hoped in that area.  His SLP was happy to say that he has language and it's coming along developmentally, but his articulation due to his apraxia is tough for him (as it will be).  As he adds more words, he drops more and more sounds and endings.  He is able to be understood in most contexts, but it's still very broken.

He continues to be a cuddly and sweet boy.  Lately he has grown attached to his baby, strangely named, Kick.  The other night he told his that the baby's name wasn't named Kick anymore, but we were to call it "Another Kick".  We often hear stories that the baby is sleeping and that we need to keep our voices down, and that the baby needs to be fed, "Rye now!" (right now).

I know his love for babies comes from his big sister - she plays with her Bitty Babies daily, the cute little girls at his at home daycare, and his new cousin who was born this month, Baby R:

(I love how he has his hands out to hold Baby R)

Our Bee-bee is growing up so fast:

Here she is at K-Orientation last June and this week for her "Q and U Wedding" at School.

She is growing anxious for 1st grade and at the same time, she is ready to be done with school.  She is doing so well - reading at an end of 1st grade level and still adding and subtracting numbers in her head.  She is a delight, just don't ask her to clean her room. ;)  She finished her first year of Girl Scout Daisies and her first spring soccer season and she is hooked on both.  She also had the honor of having her painted duck be in the city-wide Art Show:

Both kids and I went on an overnight camping trip up to NH a few weeks ago with the Girl Scouts and had a blast.  I hope that over the summer we can do another camping trip with hubby.

Our summer will be a busy one - Cha-cha will be at morning summer school and he will continue with 2 sessions of private speech a week.  We have a trip this month to go to the big hospital in the city to see Cha-cha's Developmental Pedi for a continuing follow up.  I signed him up for some preschool game afternoons through the rec department, so we will see how those go.  Bee-bee will go to some rec department morning camps with an art camp in the afternoon one day a week.  I'm still trying to figure out how to fit in swim lessons for the both of them, but I'm hoping we can make something work.  My parents have moved to a coastal town with property on the waterfront, so we tend to take full advantage of that. ;)  I foresee a lot of Thursday night trips up to see them so we can get an early morning start on Friday's to the beach.  We also have a big cruise coming up with my In Laws and a trip to NYC to see my best friend and her family.  It will definitely be a full, but fun summer! :)



"They make my words happy"

Things have been going along lately.  Cha-cha has been plugging along with school and therapy and doing a great job.  His words are trying to come out as best as they can.  Sometimes, it sounds like a combination of being drunk, marbles in his mouth and a nasal blockage when his words come out.  I've read and been told that as a child with CAS grows up, their speech becomes more intelligible and it often sounds like they have an accent.  I can see him working on one...it will make him distinct and unique. ;)

It's Better Speech and Hearing Month, and every day on FB, I'm putting up a fact about CAS to help promote awareness - I got my facts from Apraxia Mom - a great blog I follow who gives a lot of great advice for parents of children with CAS.  I'm not doing it to be annoying, but to help others understand about what Apraxia is and how it effects the kiddos who have it and the families who raise them. 

I feel fortunate that we started this whole process early - I pushed for EI at 7 months when I knew in my heart something wasn't right.  I pushed for having an outside eval at 2 1/2 months, and I pushed for our school referral to put Cha-cha in the right placement.  I recently picked up this book, and I felt relieved that I could pretty much skim through the first 4 chapters or so because we've already lived the figuring out and diagnosing process.

Despite hitting walls from time to time, we've seen glimpses of hope lately.  Cha-cha wants to communicate with us, and at times, he will push and go on and on with his words.  Hearing him say, "Et me teh oo a sor-rey.  Unse a-pon a tie..." (Let me tell you a story.  Once upon a time...) makes me laugh and my heart soar that he even knows how to stall at bedtime.  We've had some ups and downs with this new school and the adjustment hasn't been easy.  It hurts to hear him say that he doesn't play with anyone or hear his random thoughts of, "Big problem at Pre-school" and not have any idea what he's talking about (or a teacher who can't recall what the "problem" is).  He does enjoy his new school and he loves his daycare afterwards.  I've seen him be more assertive with others when I pick him up at daycare and I have seen his softer side of coddling the younger children and being gentle with them.  The change has been good for him.

Tonight, after not understanding something that he said, I just came out and asked him, "Cha-cha, does it bother you that your words don't come out?"  He just looked at me and gave me a smile.  I asked him, "Does Miss Emily help you with your words?  Does she make them easier?"  He looked at me and said, "Miss Debbie, Miss Su-sun, Miss Ta-ra, an Miss Em-lee, dey may my wirds ha-pee."  Hearing that makes all the sadness and driving around worth it all to know that he knows that we're all here to help him.