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!

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 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