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. :)

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

Day 12 of Better Hearing and Speech Month

Mother's Day and the "Normal" Stuff

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

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

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

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

Day 10 - Siblings

Day 10 of Better Hearing and Speech Month

Siblings

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

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

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

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

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

May 5th - Play

Day 5 of Better Hearing and Speech Month

Play

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

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

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

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

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

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.

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.

Two Quotes and Two Wonderful Kids

"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

I read this last night and immediately reposted it on FB.  This is exactly what I want to say to people when they ask me what Apraxia is and how it effects our Cha-cha.  I'm so close to printing it on cards and keeping it handy to pass out to people I encounter who ask about him.  It's not that I've found many people to be rude, and I'm not doing it to be mean, but I want people to understand what it's like to be Cha-cha and have Apraxia.  The words are simple, but it paints the big picture. 

We are lucky - he's made huge progress and he tries to communicate with those he feels comfortable with.  Even though he may get frustrated about speaking, he's happy.  He loves life.  He smiles and laughs and giggles and has become a little jokester.  He's a sensitive little guy who wants to do the right thing.  He goes with the flow and is happy if you're happy.  Not to many people can say that about their kid.  We are blessed.

Then the wonderful little girl in our life said this today about Cha-cha:

"Mommy, when Cha-cha is in Kindergarten, I want him to be just like me." 

I asked her how that would be and she said, "I want him to be as smart as me.  I want him to be in the top reading group and be very good in math.  I want him to be a good listener and not get into trouble.  I'm going to help him do that mommy."

And I bet she will.

This probably hasn't been easy on her having to go to so many appointments and have attention be focused on Cha-cha so much - but she gets it.  She loves him.  She wants him to succeed.  The lessons she's learning can't be learned in a formal classroom setting.  These are life lessons and she gets it.

There's a reason God chose us to have these two children.  At times, they try our patience to no end and may drive us to a drink or two.  Our hair is a little grayer, but we have more laugh lines than what we started out having 6+ years ago.  They not only teach each other, but they teach us too.

6 Weeks In

We are now 6 weeks in to Cha-cha's new school.   He seems to enjoy his new school and happily goes in with a smile and a wave to Hubby when he drops him off.  Cha-cha enjoys riding on the school bus to his at home daycare and enjoys his down time having lunch, occasionally napping and playing with some new friends of various ages.  Again, it's been more difficult for me then him, since I don't have that daily interaction of picking him up like I did when he was in full time daycare.  I always got a note from EI if they had been there and I either got a note or the chance to talk one on one with his teachers if there were any issues, or if he had just had a great day.

I'm struggling with the lack of communication between his school and home.  Because I'm not a stay at home mom, I don't have the luxury of picking him up at school every day and getting the thumbs up or the quick, "Just to let you know..."  I'm left with a piece of paper with some X's on it to tell me what he did that day with no writing.  It's up to a 3 year old boy to tell me what he did and how his day went.  Sometimes, I get the, "I go moto roo" (I go to the motor room) or "I pay pe-en pay" (I play pretend play).  But ask him who he played with or who went with him, we get the response of, "Nobody.  I pay by mysef."  The teacher sent home a list of names of the kids in the classroom and I still get, "Nobody."  Developmentally, he still does a lot of parallel play, but to hear that he didn't play with anyone or no one wants to play with him, breaks my heart.  According to his teacher, he is rarely alone and she was "surprised" to hear that he says that at home.

After a week of emailing his teacher and not hearing back, I was furious.  I even started a Facebook post about how long was appropriate to get back to a teacher (myself being a teacher too).  I got the typical range of 24-48 hours depending on absences and weekends, but a week is uncalled for.  In the teacher's defense, she said she didn't have any concerns, so she didn't see why it was important to get back to me so soon.  I explained to her for the second time in a month, that I need the feed back for my son and my sanity.  I need to know how he's doing and if he had a good day or not.  I need to know what he enjoyed and maybe what he didn't enjoy.  Throw in the teacher starting to potty train him (without communication), and I had a huge mix up of a little boy telling me that they took his diaper off and let him pee in his pants and her telling me (a day later) that he peed through his diaper and that was why they had to change him.  With no communication as important as a written "Changed clothes due to diaper leak," I was ready to pull him out of the school.  I'm hoping now with a second reminder that I need communication and a call to the Special Education Coordinator, I will hear from the teacher in a timely manner and I will get more feedback on his communication sheet.

I know I'm not a perfect teacher and I may have not gotten back to a parent in a super fast or timely manner in the past, but when you have a child who is limited in his communication skills and speech (and is THREE!!!!), you don't get much.  People tell me all the time that boys don't "report" much about school - but in order to build Cha-cha's communication skills, if I know what happened at school, I can encourage him to share with his sister, hubby and grandparents.  My goal at home is to increase his opportunities for communication so that he can practice his speech and language.  He's not one to want to sit down and do apraxia speech cards, but if I can get him to tell 5 different people how he hunted for Easter Eggs or how he got Batman Undies from the Easter Bunny, then I have increased the purpose of communicating and given him the chance to practice in real life.

Apparently, from my phone call with the teacher on Friday, he is doing well.  He likes school and follows the routine with no concerns.  He typically chooses pretend play and enjoys playing in the kitchen and taking care of the dolls.  He needs coaxing to participate in the art activities.  When asked to sit on the toilet, he will sit and pee pretty much all the time.  He is very compliant and goes with the flow.  The teacher and assistant understand him about 70% of the time, but his classmates is less than that.  Today when I spoke to the Special Ed chair, she said that she would be setting up a progress meeting for him after our Spring Break...and then went into how it can't be before or afterschool due to contractual hours...bursts my bubble b/c as a teacher, there are many days where I am there before or afterschool conversing with parents on the phone or in person.  I know I have never thrown the contract into a parent's face before as a reason why I can't converse with them.  I understand why we have a contract and it's purpose, but for the good of our children's future, sometimes we need to bend a little. 

So in all, he's doing "well", but I'm not 100% thrilled.  I probably will never be 100% thrilled, but I'd like to be closer to that.

Temporary Burn Out?

The last two private sessions for Cha-cha have been tough.  On Saturday, Hubby and the SLP noted that he was slow to warm up and it took time for him to get into his play/therapy mode with the SLP (who he has been seeing twice a week since August).  Today, he almost cried when it was time to go back to her room.  Both Bee-bee and I followed him back, as he doesn't like to be separated from us, and after about 5 minutes, he sat in my lap and pretty much refused to participate.  He would then go back and forth from playing to my lap.  After about 40 minutes, he laid across my lap and put his hands over his ears and refused to continue. 

I asked him what was wrong and he said, "No.  All done." 

I then asked him if he was upset and frustrated and he said, "Yes."  When I asked him why he was upset, he said, "No talk nobody." :(

It pains me.  I don't know what is completely going on in that little big head of his.  As he's getting older, he's noticing he is not like other kids.  I know that in my heart and his teachers have told me this.  Even at a young age, I've heard kids ask me, "Why doesn't he talk?" or "Why doesn't he talk right?"  Does bullying start at age 3?  I'm hoping that this small lapse in following through with therapy is related to him possibly being overtired, or the time change or adjusting to his new school.  We were warned that there would be setbacks in his progress with the transition, but I didn't think it would happen with him. 

Thankfully, he's willing to talk when he's happy or excited and he doesn't seem too upset over the sessions like I am.  Tonight, when he was going to bed, I had him giggling about going to school, taking the school bus to daycare and then our plans for when I pick him up.  Hopefully, the week will be a good one for him and he will have a better session on Saturday.

Differences and Similarities

It's amazing how different two siblings can be.  The both have DNA from the same parents and have been brought up pretty much the same way, but they are so different.  In our house, it's almost like they both got the complete opposite DNA minus the blue eyes and occasional tongue sticking out when they are thinking chromosomes.

Bee-bee is creative in her crafts - she can cut and create and glue and create all day long.  She loves to draw and color.  Cha-cha could care less - he is creative in his play.  He loves to make his "guys" help each other, pretend to cook food on his mini grill, or build with blocks.

Bee-bee is a talker - she came out of the womb being vocal and she has remained that way since then.  She even talks in her sleep.  Once while in the car with my MIL, Bee-bee stopped talking and she thought that Bee-bee had fallen asleep...no, insisted Bee-bee, she was just taking a break from talking.  Then you have Cha-cha, who is in the process of finding his voice and using it.  He does a good job, but he lets his actions speak for himself more.

Bee-bee is a kid who will jump right into something without even thinking about it.  We worry that someday this will end us up in the emergency room and we've had some near misses.  She is enthusiastic about new adventures and seeing what is next.  Cha-cha is comfortable in his own surroundings.  When there is something new to be seen, he stays on the outskirts observing, before getting comfortable joining in.  He's not one to take risks until he's done it a few times.

There are some similarities.  Both are tall and will probably be taller than me by 5th grade.  Both have a love for animals and others.  They are social beings and enjoy being around people, just Cha-cha prefers to be around people he knows more.  Both get overtired fast and will have short tempers if their quota of sleep has not been reached.  They hate water in their eyes during bath time.  Both enjoy playing on their own and creating their own play.  It's nice for me when they can occupy their own time.  It's amazing how they are siblings and how being who they are can make them so different from each other and at the same time, how similar they truly are. 

Happy Birthday and First Day Success!

Our Cha-cha turned three today.  It baffles me that 3 years ago, he came into our lives after a rough c-section...all 10lbs 3oz and 22 inches of him.  He didn't make that c-section easy.  My spinal didn't take all the way and it was scary for me that they would cut when I could still feel things (thankfully, they didn't and it took after they tilted me in a weird way).  I remember there was a lot of commotion, the anestheiologist said that as soon as I heard suctioning, within 2 minutes, our baby would be born.  I remember minutes going by and the doctor yelling to get a vacuum from the other room and that he was turning breech on the operating table.  There was a lot of pushing - later I found out that it took 3 people to push/pull him out.  My doctor joked afterwards that she didn't need to go to the gym that day. He didn't cry right away, but as soon as we could see him on that side table, he cried.  As soon as hubby was able to hold him, he quieted down and I got to kiss his cheek.  His birth was a little different than Bee-bee's - with her, there was a lot of friendly chatter, things seemed lighter - with him, I was more nervous.  Maybe because I knew that he was our last child, maybe I was afraid of my own mortality thinking of my 3 year old girl at home.  Either way, it was different. 

The nice thing about a second child is that not a lot of people come to visit you, especially in February during a snow storm. ;)  When you're stuck at the hospital for 4 days and all you are responsible for is nursing your baby and resting, you do a lot of bonding.  You're less nervous and you know how precious those first moments are because life will quickly pass by and you'll watch your child getting on a school bus.  You have this older child who comes in the hospital and views her brother with excitement and delight.  She beams at his little features and quietly sings, "You are My Sunshine" to him.  She talks about being a family now that he's here.

Flash forward to today.  We really weren't going to celebrate a lot for his birthday today - we did a lot of celebrating last week and this weekend, so he could focus on his first day of intergrated preschool in a language based classroom.  Bee-bee woke up singing Happy Birthday to him and cheering him on about being 3.  I made his special pancakes and he picked out a tiger shirt to wear to school.  He reminded us of his new teachers' names, talked about riding the bus, and me picking him up at the end of the day.

We dropped off Bee-bee and hubby and I drove to his school.  We were greeted at the door by his new teacher and she led him into the classrom and showed him the morning routine - hanging up his coat and backpack, putting his snack on the shelf in his cubby, making his mark next to his name (in which he put the cap back on the cover and made sure it was in the marker box - to which the teacher winked at me and said, "He's done this before, you can tell."), and then washing his hands.  I asked him for a high five and he looked at hubby and I and said, "Good-bye Mommy Daddy" and he spun around and off he went.  Hubby and I looked at each other and said goodbye to the other teacher and walked out.  As soon as we hit the cold air, we looked at each other an laughed.  All that nervous energy, all that planning and worry - and that is how he reacted.  I mentioned on FB today that God didn't let him cry - God knew I couldn't handle his tears today.  My own were hard enough to handle.

At the end of the day, he had a great first day.  He rode the bus and he went to daycare after school just fine (however he didn't nap).  He went to his afternoon/evening speech session and worked hard for 57/60 minutes he was there.  Three minutes before leaving, he looked at his SLP and said, "I done.  Good-bye" and walked out the therapy room door.  He was tired, he was done with the day.  He came home, we watched Curious George, ate dinner and went to bed after reading 2 books.  He asked for cuddles and gave me kisses goodnight.

Oh, and if you ask him how old he is, you will not hear him say, "Fu-wee"...no, he will tell you that he's five.  He better not grow up that fast!

Saying Good-bye to EI

Today was our last meeting with EI.  It was so sad to see them go.  Our Developmental Specialist has been with us since Cha-cha was 7 months old...she was there when he learned to crawl, sit up, and say his first sounds.  The SLP took over as lead when we had the diagnosis of Apraxia, even though we had been seeing her for a good 8 months beforehand.  And the OT started once we found out about his SPD.  These three women worked tirelessly up to 4-5 times a week combined, meeting with him, going to his school, meeting with his teacher, and us as a family.  They were my go to if I had a question, concern, or wanted to share an accomplishment.  We exchange texts over funny Cha-cha-isms, fun things like our current level of "Where's the Water?" or other cool apps and websites for children ourselves.  They've attended doctor's appointments, fielding questions when we became overwhelmed, adding in additional information when necessary, and collaborated with others to bring out the best for Cha-cha.  It's a bittersweet day - Cha-cha is old enough now for school aged services and has made so much progress under their services.  How I wish we lived in a state where services would continue to the next beginning school year or until age 5, but I know that he will continue to thrive and grow with other means of support.

Cha-cha said good bye pretty nonchalantly.  At one point he even hid in his room, but then was able to come out and hug and wave them off.  He enjoyed the balloon, card and cupcakes they brought to celebrate his birthday and his accomplishments.  I shed a few tears, as did they - but I wasn't expecting Bee-bee to take it so hard. 

She had uncontrollable sobs as they pulled away.  She understands that this is it - and unless we have some by chance passing, we may not see them again.  She gets it.  The Developmental Specialist has been here since she was 3 1/2.  Because of these wonderful women, our daughter uses words like prompt, utterance, plural, intonation, and consonant-vowel sounds.  Yes, I see a future Speech Pathologist on our hands.  Over the summer she said to me, "Mommy, I don't know if I should be studying my Kindergarten stuff or my Speech Pathologist stuff."  She has sat through almost every home visit and watched and then mimicked these women after they left.  It was because of Bee-bee, we got Cha-cha to say "Ma-ma" and "Bee-bee" through her prompting.  So many times our focus has been on Cha-cha and when you turn around, it's been Bee-bee's focus too.  It's hard to remember that she's just a 6 year old, but a 6 year old who understands what it's like to work hard, to reach limits, and still demand more.  With Cha-cha's diagnosis and therapies, she's seen someone younger than herself defy what doctors have suggested.  It's a lesson that can not be replicated in any classroom or told by any book.  I hope she always remembers this. :)

We made it through the last day...

I don't think I've cried this much in a long time.  Maybe the last time I did was when we found out that Cha-cha had Apraxia and SPD, however I think I took that easier than I did seeing him enter his new school and seeing exactly what he needs to have in order to be successful.  Seeing the structure and the prompts, seeing the visual pieces of the day, watching the routines - it's going to be a tough transition for him.  Thankfully, a lot of the things will be repetitive from his old school and he will be in good hands and he will be getting the support that he needs.

Hearing that your child has a disability or that he's not neurotypical is tough to swallow - but seeing what it's going to look like in an academic setting (especially when you're a teacher) is a whole different experience.  Yes, he's come so far, but he has a long way to go.  It's another grieving process.  We didn't make it to Italy; we made it to Holland and we're going to enjoy it and make the best out of it that we can.

We have a week until the next big day - however before that we need to say goodbye to EI.  Tuesday is going to be another toughie, but we'll get through it.  I'm planning on scheduling a massage for me this week, and tonight is date night with hubby - and there is a frozen Snickers in the freezer. ;)

Last Day

The week before vacation is always a hectic week at work.  Kids' bodies are longing for a break from school, just as much as the teachers are.  It's a time of wrapping up projects, assessments, and getting things ready to start new units when we return.  I do my best to put my best face forward and keep the kids learning and content until break.  It's not always easy, but today's laughter in my classroom 5 minutes before the call for busses, let me know that I'm doing my best.  It's been a good distraction to what's going on with my own kiddo. 

Tomorrow is Cha-cha's last day at his current daycare.  He's been there since he was 6 months old and I just don't know how tomorrow is going to pan out.  We went today and picked out gifts for his teacher and the director and he looked up at me and asked me, "Why?"  I told him that it's time for him to go to a big boy school and get to take a school bus and go to Miss Wendy's (our beloved at home daycare provider that cared for Bee-bee until she was 3 1/2 years old) - he smiled and said, "I go skoo ba?".  I then told him that he won't be going back to Sprouts, he knelt down on the ground and he cried - big, fat tears.  We bought cupcakes and I let him pick 3 different types because at that point, I couldn't continue to argue with him. 

Tomorrow morning, we take him to see his new school.  We'll see his new teacher, we will try to work out all the logistics, and after the orientation, hubby will drop him off for his last day and we'll both to work.  Cha-cha will bring books to give the school as a thank you, cupcakes to eat with his friends, and the gifts he picked out for his teachers.  When I go to pick him up at the end of the day, we'll say good-bye...I keep saying it's going to be a good thing.  It's true, I can't keep up the stamina of all these therapies, work, and home.  Having them done at school with just two outside therapies is going to give us more time - which is always precious when you're a working mom.

We'll make it through the day.  We have a week off and then we'll set off on our new adventure.

Coming to Terms with Change...

In a month or so, Cha-cha will be 36 months or 3 years old and he will age out of Early Intervention.  I can't express how much help EI has been to us.  One of our therapists has been with us since he was 7 months old.  How can you say goodbye to someone who has known your son for this long?  His developmental specialist wrote on his note this week that he only had 5 more visits left with her.  I'm going to be a blubbering mess when I have to say goodbye. :(

On his 3rd birthday, he will leave the daycare he has known since he was 6 months old.  He's going to ride a school bus (a short one though).  He's going to go to a brand new school, where he doesn't know anyone and they don't know him (yet).  He is going to get the services he needs to be successful.  He's going to go to Bee-bee's old daycare provider in the afternoons and on Wednesdays.  If it wasn't for our beloved Wendy caring for him after school, I might have to be committed somewhere. ;)  Last week when she emailed me that there was an opening, my heart soared.  It was then I knew that things would be ok.  I haven't been a religious person lately, but hearing that was God answering our prayers. 

Wednesday was my last board meeting that I would attend for Cha-cha's current school/daycare.  It was tough to say goodbye to them and many wrote me emails afterwards reminding me that we were doing the right thing for him.  I have been so lucky that my school system understands the importance of exceptional child care for it's teacher's children and that both of my children were able to benefit from the school/daycare.  If only they had a SLP on staff...however then the tuition would be out of control. ;)

This week, I'm excited to go back to the big hospital in the city to see the developmental pediatrician.  I can't wait for her to see all the improvements Cha-cha has made.  I want him to show off as much as his little voice can, so we can say, "Ha Apraxia!  We're kicking you in the a**!"  I can't wait for her to see his current SLP reports and IEP and remind us we're doing the right thing.  I want him to shock her with one of his super long sentences he's been rocking out.  Just the other day I heard, "Ca ma-ma, see in-sy da fish ta!" (Come ma-ma, see inside the fish tank!)...probably his longest sentence yet! :)  Yes!!!!