Wednesday, November 30, 2011

Being Thankful

The month of November has been very busy for us, especially Cha-cha.  This month, he has spent 4 Wednesdays visiting a local public school for his CORE Evaluation for Special Education.  Originally, they were only going to test him in Speech and Language, however we opted to go with the full CORE so that everyone could get the big picture of him and find out what would best suit his needs.  This process is not an easy process, especially with me being a teacher, and it's horrendous on your emotions.  I know too much and I feel like I am the evaluator's worst nightmare.  I know what I want for my child and you can't tell me differently.  I am the psycho who will call and ask a million questions and complain while doing it, however in doing so, I am heard and I know they also want the best things for Cha-cha.

Which brings me to the thankful part of all of this.  I am ever so thankful to my husband and my father, who accompanied Cha-cha to 3 of his test sessions.  Since both hubby and I work, taking him to these evaluations during work hours is next to impossible, especially for me.  For me having to take a step back in this process and let others do it has been both stressful, but good for me.  I've had to let others do it for me, which is never easy for me to do.  I am thankful to my other family members, especially my mother and sisters, and many friends who listen to me vent or hear me through when I'm thinking about the whole process.

Through this process, I've been reminded that I need to be thankful for so many things.  I'm thankful for our health insurance, and even though it's going up $2,000 for next year (don't ask), Cha-cha's outside therapies are covered with just a copay and he gets unlimited sessions for the entire year, as long as the paperwork is filed.  I'm grateful that EI is paid in full by our health insurance with no copays.  Thinking of having to pay for all of that therapy is mind boggling.

I'm thankful that Cha-cha has amazing therapists, who fell in love with him the moment they saw him and work so hard to see him succeed.  One of his therapists has been with him since he was 7 months old.  He loves her like an aunt.  His face lights up when he sees her.  She has been my confidant through all of this, taking my texts and phone calls when I have a question, and crying with joy with me when he accomplishes something.  We are so blessed to have found a wonderful SLP undergoing her Fellowship year, who Cha-cha adores.  On Saturdays, all you have to do is mention going to see "Eh-eh" and he has his coat and shoes and is ready to roll.  To hear compliments from his therapists like, "He is such a pleasure to work with!" and "He has great play and attention skills," make me feel good that we are doing it right.

Through this evaluation process, the head of the Special Ed Department visited Cha-cha's daycare/preschool and as soon as she left, she called me to tell me what a wonderful place it is.  I am very fortunate that my school system realized how important it was for teacher's children to have a wonderful daycare/preschool.  It took a lot of work on behalf of a few of the teachers, but the daycare/preschool is now into it's 3rd year of being a success.  Today, the SLP testing Cha-cha raved about it after hearing about it from her director.  Of course I knew it was great, but hearing from the specialists that have seen almost all the daycares around here, they have said that this school is like no other daycare/preschool they have ever seen.  As a working mother, to hear that about my child's daycare/preschool - it just reaffirms that we again did the right thing.  I have to say, I am thankful for Cha-cha's teachers - from the ones who rocked him as an infant to the ones who are teaching him to count to 10.  They have bent over backwards and learned to take direction from specialists coming in and helping them work with Cha-cha.  They occasionally send me pictures and texts of his accomplishments of his day and always give me a full report when I pick him up.  They know his quirks and have quickly become mind readers when he needs something and can't say it correctly.

I'm also very thankful for having a wonderful daughter.  We are learning that being 5 1/2 and in Kindergarten isn't easy sometimes, but she is taking it all in stride to the best of her ability.  She has become very patient with Cha-cha.  They have their moments for sure, but she is always modeling appropriate language and trying to elicit sounds from him all the time - just like his therapists do.  Seeing him say words makes me so proud, but hearing her yell, "That's great!  That was so clear!" makes me tear up.  Hubby and I say she is going to do great things, but honestly, she's already doing them.

We don't know where this evaluation will take us.  Cha-cha has come a long, long way from back in June when he only had 7 approximations.  Just the other day, he counted to 5 on his own and told me to, "Go car momma" (guh ka ma-ma), when he wanted something from the Toys R Us flyer.  Hubby and I have a lot of decisions to make on what is going to be best for him and for us.  I'm not good with change and uncertainty.  We'll be doing a lot of talking, thinking, and praying about it all.

Friday, November 11, 2011

TV Watching Increased My Son's Vocabulary!

Yes, sounds like a National Enquirer headline, but it's true.  Since increasing Cha-cha's tv watching, he has added many new words and phrases to his vocabulary...

Tee-tee= TV
Ca Doz = Car Dogs AKA Turbo Dogs
mote ca = Remote Control
fa=fast forward
NO!= No, that's not Turbo Dogs!
cha= Change the channel to Turbo Dogs
mo doz= more Turbo Dogs
Aaaah!=It's a commercial in between Turbo Dogs. Fix it now!

Yes, not only are we now obsessed with TV, but we are obsessed with Turbo Dogs. :)

Monday, November 7, 2011

A step forward, a step back and drawing the line...

Cha-cha is working so hard in his therapy and day to day life trying his best to talk more.  He is doing a lot of copying what we say and trying to answer more questions when we ask them.  At school, he is talking more than he ever has - even joking around telling his teacher that only Daddy and Bee-bee sleep at home and that Mommy sleeps in the car.

The difficulty we've been having lately is understanding what he's saying.  With the increase of vocabulary and words, the ability for us to understand his intelligibility has decreased.  Thankfully for now, his frustration hasn't increased, or we'd really be in trouble.  It's just that sometimes, my super powers for reading minds fails me.  Cha-cha will say something and I just look at him and nod my head in agreement, hoping that I'm doing the right gesture.  School and his speech therapists are also noticing this.  Thankfully, he's a laid back kid, who doesn't seem too bothered by it - but it's frustrating for everyone involved.

An area we've made progress on the past week is Cha-cha's sleeping.  Since August when we took the crib away, Cha-cha's been sleeping in our bed or falling asleep while hubby has been driving around.  It's been exhausting, and hubby and I came to our breaking point and made him cry it out last week.  It sucked, but last night he actually didn't even protest when we put him in his bed and shut the door.  Tonight was easy too - he only came to his door once to open it.

Something I'm struggling with is dealing with a child with CAS and SPD.  Don't get me wrong, we could be dealing with a host of different issues and we have a very healthy boy on our hands...but the looks from others when he's laying on the ground, the comments of him not talking or "when is he going to get better?" - it hurts.  Maybe people aren't staring, maybe they're admiring my children - but sometimes, when my sh*tty committee is working overtime, any stare or gaze in the direction of my children feels like a pity look.  Hubby usually tells people he's shy; my way of dealing with it is to talk about the CAS and SPD, however I usually get blank stares or the questioning of, "Oh, he'll talk and be normal...right?"  I think when I'm feeling upset about it all, I may need to use hubby's "shy" route.

Lately, we don't know if Cha-cha's refusal to put on shoes or wear a winter coat is from his SPD - it could be, but at the same time, I think this 32 month old is playing us.  He'll put on a coat for a bribe or for his teachers at school, but for us - he refuses, then he will go outside and lay on the ground and say his word for "cold" and look at you with a disapproving look.  You want to scream and yell - but it doesn't make the situation any better, so I tell him that it was his choice not to wear a coat and move on.  However that moving on thing is hard - especially when you have a 38lb, 40 inch 32 month old that refuses to walk.  Have I mentioned that we have a giant for a son who also has low tone?  So when you carry him, he is dead weight.  He doesn't wrap his arms around you or shift his legs around your hip - he just hangs.  I've resorted to the stroller - but again, he's so tall, he can put his feel on the wheels and stop the stroller from moving, which leads to a pop-a-wheelie ride on the back wheels.  Graco and Chicco need to start making strollers for giant kids.

It's a frustrating thing, having a child with special needs - no matter what the disability's hard as a parent to know what's the disability and what's the personality.  How much of all of this is being two years old?  How much do you need to take with a grain of salt, and how much should you really pick your battles?  You never want to say, "Forget it," because that would be turning your back on your child - but at the same time, you don't want to spoil them and ruin them for life because you gave into him not to wear his coat.  Then again, who's life has been ruined for not wearing a coat?  All the time, I question myself with, how much can he really do vs. what can't he do?  Do you make the excuse that he can't, or push him because you want him to do it just like the other "neurotypical" children?  However, you have to remember and accept that he's not neurotypical.  You have to redefine what is "normal" and if you have previous children who are neurotypical, you have to rewrite that definition...and you will probably second guess yourself a million times. ;)