Monday, July 1, 2013

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.

Friday, June 21, 2013

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!

Saturday, June 8, 2013


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! ;)

Wednesday, May 15, 2013

Day 15 - Celebrations

Day 15 of Better Speech and Hearing Month


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. :)

Tuesday, May 14, 2013

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.

Monday, May 13, 2013

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!!!


Sunday, May 12, 2013

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."