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 1st - Progress

It's been a long school year so far with Cha-Cha. We've had our share of ups and downs, changes in therapists and schedules, an additional diagnosis of Obstructed Airway Sleep Apnea, surgery to remove tonsils and adenoids, genetic testing (no findings), and then most recently, finding out that he is "cured" of his apnea due to the surgery (yeah!).

Even though there have been lows in Cha-cha's year, we've had more highs and progress. Cha-Cha speaks in full sentences. He uses vocabulary that blows adults away. He's understood by close family 90/95% of the time, familiar people 65-75%, and strangers about 50%. He can say his sisters name and his own name...no more Cha-Cha and Bee-bee (to our daughter's delight)! He's 90% toilet trained during the daytime. He talks about two friends at school. He loves "working" in the back yard, digging in his sandbox and moving mulch. He can entertain himself with his "guys", trains, and various toys. He is gentle and comforting to his baby cousin at daycare. He can maneuver an iPad like no body's business. He stands up for his big sister when she gets into trouble ("You no say that to my sister!" is a common line that comes out of his mouth). Heck, even last night when he fell out of his big boy bed for the first time, he managed to fall on his pillow and blanket first.

Charlie's apraxia and SPD is not easy, but as I have said before, we are blessed in that it could be so much worse. It is something that we hope will resolve itself with therapy and time, but it is a lot of work and patience.

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!