Saturday, June 03, 2006

Here comes Choo Choo!

Who knows how the whole nickname thing gets started? Actually, you usually know how they get started, but just how and why they end up sticking takes on a life of its own.

Tali is Noopsie, actually Daddy's pretty much the only one who still uses this one. Noopsie of course evolved from Snoopsie which evolved from Snoopy which evolved from Munchkin. I agree, Tali is a perfectly nice name. When Julian came along and Adrian (Mr Scissorhands-yes, nickname) called him Noopsie, well Tali had to remind Daddy that one was taken. Musing aloud - Adrian said "well, let's see, I dub thee Doopsie. But that's not enough on its own, you need more of a title. Okay, I dub thee "Choo Choo el Doopsie!". Choo Choo for short, we silly Americans shorten everyone's name.

Julian is 4 1/2 years old and not a day goes by that I do not call him Choo Choo. Adrian's mom calls him "Chootchlee", some sort of Romanian/Hungarian take on it. My entire family asks "how's Choo Choo?" in conversation, all with different inflections - ddddeeep voice Choo Choo, quick and high tone all together ChooChoo, like the sound of the actual engine, chooooo chooo! We have a long running joke recalling how I would try to get Julian to eat by saying, "Choo Choo, chew" or "Chew, Choo Choo" or just "Chew chew chew", cracked him up every time.

How's Choo Choo? Let's ask him as someone did this evening. "How are you Julian?" Choo Choo's response "There was a dead bug." Oh? "Yeah, it was resting" Hhhm? "Maybe it ate too much honey". Sticky situation. "When's your birthday Julian" (a non-family member asking of course) "in July" called over his shoulder. Close, November. It is at this point that such conversations lose their appeal for Julian. He does not like to be cornered into this area that he does not excel at. Apparently, the dead bug was the most impressive part of Tali's violin recital. Certainly worthy of mention - over and over and over. But this is just a tiny glimpse into Choo Choo's world.

The developmental apple cart was upset just a tiny bit at Julian's 15 month well baby check-up. All health issues fine - growing well, happy, sweet, an all around joy, rarely cries, still breastfeeding. Conversation with Julian's pediatrician:

Dr. R: Any words yet? Me: Babbling, he's trying. Dr. R: Trying to take any steps? Me: Ummm, trying, mostly still prefers crawling, though. Patty cake? Doesn't really now that you mention it. How does he indicate what he would like, does he point? I remember joking (maybe pleading), "Could it be that we take such good care of him, he never needs to indicate?" I asked weakly. Probably not. Dr. R. had begun to lay the groundwork by saying, "You know, in and of itself, his not walking and talking yet don't concern me so much - some children are just late bloomers. But coupled with his not reaching some of the "play milestones" makes it a little different. So let's have him come in a little before 18 months and we'll see how he's doing. I know I had begun to feel that sense of unreality, that surreal quality of floating and not hearing anything else as I dressed up Julian, paid the copay and traveled home. Sure I talked to Julian as I always did, sang to him on the way home in the car as I blinked back tears, but I was just not present in my body at that time. Then I regrouped (probably as someone blared on their horn when I sat at the green light) and came up with all the reasons that Dr. R. was wrong. Julian was discriminating, not delayed. He chose not to play patty cake - it really is an overrated game! He kinda liked peek-a-boo. Now peek-a-boo, that's a game! He liked to play with my hair, it soothed him.

Truth is I never compared my children. I just didn't. I mean sure in the, "oh he reminds me of Tali when he makes that face. His hair is a little darker than hers come to think of it - both curly though". That really was the only sort of comparison that I did. Tali was a girl - Julian was a boy. Story goes, girls are quicker in general on the early developmental scale, boys take their time. Besides, Tali was early with everything. She started talking early - 8 months, walking 12 months. By 15 months, she pretty much had the whole developmental thing sewn up. She was a girl, Julian needed a little more time - who was I to rush him and make him feel badly?

Fast forward - with a little trepidation, but what joy, Julian took his first three steps between Mommy and Daddy on our front walk at 17 1/2 months! Right about then we did go back to Dr. R who gently walked us through the developmental issues and recommended we have him evaluated through the state's Early Intervention Program (EI) which we did. If you think I felt sucker punched after Dr. R. first broaching the topic, you can only imagine how we felt after we went through the various evaluations at our house and read the subsequent written evaluations. To qualify for therapy under EI, you need to display significant developmental delay (33%) in one area or at least 25% in two. Julian was delayed in cognitive, gross motor, fine motor and yes those damned play skills. Suffice it to say, he aced the test and therapies commenced shortly thereafter.

Julian received therapies at home every day from Monday to Friday. One day O/T P/T, next day Speech O/T, next day Special Educator P/T, etc. All handled with Choo Choo's usual good nature. Julian was seen by a Pediatric Neurologist, had an MRI of the brain and spine - normal. If you've ever been to a neurologist, well they're not fun. They are very matter of fact it seems to me when discussing your child's neurological make-up. Julian has no "diagnosis", per se. He struggles with global developmental delay and sensory intergration issues. This loosely translated means that Julian craves deep physical input and does not always realize when he has crossed the boundary of too much of a hug - say to kids on the playground, or when he is a close talker, say when his nose is up against his buddy's cheek. Even though he walked, his balance was off and he fell - a lot. Between his second and third year, so many pictures of him had black and blue marks on his beautiful little face. He broke his femur and had to be in a spica cast (a cast that is on both legs and ends up above the waist). Can't even go into this one here.

The one thing that Julian was off the charts in was charm! I can't properly put into words how the joy that he brings us just breaks your heart it so dynamic. As Adrian said early on when he was only a few months old , "is there a magnet in that little heart of yours"? It's how it feels to this day, he draws you in and you are his.

We all know, there are no easy answers when it comes to matters children. Julian has made great strides, his balance is a lot better. He still grapples with expressing himself and having meaningful conversations with people outside of school and family. When that occurs, he'll just turn on the charm and ask "Want some tea Mrs. Nesbit?" He's having a pretty hard time with writing and hence avoids it if at all possible. He's in a wonderful preschool and of course, still receives all of the various therapies. The key is to being the take no prisoners sort of advocate that we as parents have become. It's worked so far. Public speaking is not my favorite thing to do, but put me in a board room with various people of different disciplines deciding my child's fate and just try to shut me up. And Adrian just cuts to the chase - this is what he needs, how are you going to get that for him?

My inscription on his cast (on the bar that connected and kept his legs in place to heal) - here comes Choo Choo! Here comes Choo Choo indeed.

15 comments:

neva said...

our youngest son didn't walk until he was around 17 months... i always said it was because he was so damn fast on his hands and knees he didn't need to.

we never had him evaluated (despite the fact that lots was known 20 years ago, there wasn't really too much concern...)

he was evaluated/diagnosed with ADD at 5... again at 9 (i'll be writing a post about this experience, because it was one of the pivotal moments in all our lives.) and has struggled with these issues ever since, along with depression and OCD. sometimes i wonder if aspects of his life would be different if we had been better advised early on.

working in his favor (in a MAJOR way) is his incredible zest for life, his creativity... and that same "love magnet personality" you so astutely describe! it's how we've managed through all these years and what keeps us goin' now!

beautiful post about a charmed and lovely child! i look forward to reading of his strides and conquests in the future, for i am certain there will be MANY! : )

Miz BoheMia said...

Wow! What an amazing little soul indeed! I find it so unfair when kids have to struggle so much harder when they so truly deserve to just relax and enjoy! But it is us adults who view things this way at times... kids are just amazing in their nobility and with their lack of self-pity and utter joy at just living life and being and Julian sounds like he certainly has that down pat!

Neva! There are many holisitic and alternative therapies that can definitely help your son! I will try to write this over at your place or send you an email but if ever you need advice on what treatment modality and the like could help let me know and I will have the Loverboy on it... once again TOO BAD he can't treat him! Much love to both you ladies!

Kyahgirl said...

g, where to begin?
First, this post touched something in me and brought me to tears. Not tears of sadness, just the incredibly powerful way you describe the miracle of children moved me. Your own feelings and thoughts came across so clearly.
You are obviously doing the best thing parents can do, loving him, advocating for him, and clearing the roadblocks to his achieving his full potential.

On the subject of nicknames, an interesting note. My husbands grandparents were Polish and Ukranian. There are, in fact, a lot of Ukranian people in this area and a lot Eastern european/Russian words in the language used here.
When I was pregnant with Nicole, we called the baby 'Choochie', as it was a word for baby from one of those languages. Her nickname as a baby became 'Chum' because she liked to kiss and suck on Ron's cheek and the Ukranian word for kiss is 'chum'.

thanks for sharing this story.

G said...

Thanks to all of you ladies for your comments.

Neva, the more I talk to people, the more I find people experiencing different hurdles of their own. We really are so fortunate that early intervention is so readily available because I know Julian has come a long way as a result of some really caring therapists. I see we'll have some chatting to do. Julian has a tough time with the "sitting still" part and as he enters Kindergarten in the Fall will be in a small sized class with 2 teachers and one assistant to really work with the children.
Thank you for sharing about your son - I wish him well and will look forward to reading your post.

Miz B-You put it so succintly - about kids' noblility and lack of self pity, it's so true. I learn a lesson on life from him every day. I am really glad you stopped by, it's nice to chat with the sistas on this level. My husband is a big supporter of holistic and alternative therapies as well and as Julian grows I am sure we will try to explore. He has been to chiropracters and has also done a little cranial sacral therapy.

Kyah - Thank you too for your oh so sweet words. I think a large part of starting to blog was to just be able to put all of these things out there. It really is cathartic.

Thank you all and I am going to get ready for the Sopranos/Big Love season finale - watching Neva?

Have a good night to all. Buenos noches MizB.

Jenna Howard said...

What a lovely story about your Choo Choo. He sounds like a real charmer. Dead bugs are very important. Even I, a girl, know this. Thanks for sharing it.

My brother didn't talk until he was about three. My mom said to the specialists "He'll talk when he's damn good and ready." In early elementary school, he was diagnosed as dyslexic and my dad spent countless hours teaching him to read.

Just a few years ago, my mom looked at me and said "You know, I think you may have had ADD" to which I dryly said "Thanks Mom" since I could never focus at school. It wasn't until I had graduated from high school that I started to do well in school...well except history at the local college but that was because the guy in front of me was HOT and the prof was dull, dull, dull. "Maybe you did," she said, "but we were so focused on Bro. We should have also worked on your shyness."

Bro eventually hit his stride. I did too...on certain things.

G said...

Thanks Jenna. See, had your history prof not been so dull, your attention to the hotties may not have paid off. Don't you love these parental revelations 20 years later? Though, it seems they've turned out a very confident smart self assured lady, so ADD be damned! Again as you mention your bro and your own focus issues, I am struck by how far reaching these issues are. I never applied myself in school early on, but I chalked that up to the chaos of being 1 of 10 and the shroud of alcoholism hanging over the household. Maybe if I took out those minor details, I may have had some ADD issues as well.

Thanks for dropping in.

brian said...

Morning GQ, You know. Catch you later

Miz BoheMia said...

I am so happy to hear of your embracing of alternative medicine! I would highly recommend acupuncture (a skilled acupuncturist knows how to treat a child without needles), cranio-sacral osteopathy is amazing (a dear friend of ours, a New Yorker by the way, is an acclaimed and renowned osteopath and treated both our babies right after birth... he was the one who finally was able to help Lil' M through the awful tongue reflex so that he could finally feed as an infant) as well as homeopathy...

And if ever you have any questions or need any advice/suggestions, feel free to email me as Loverboy is quite the well of knowledge on these things!

Besos to one great mama!

karma said...

Neva, here's to you, a great mom!

my son didn't really start talking till he was almost 3. we were so worried, and had consulted a doc. the doc said there was nothing wrong with him, some kids don't like baby talk, they want to say words properly and will wait till they can.

he was so right! when my son finally started talking, he spoke in long grammatically-correct sentences. now he's an adult, but hasn't stopped talking :))

karma said...

g, i've never had a nickname. oh wait, now that i have a blog, i do ;))

G said...

Miz B - Thank you so much for that kind offer. One which I shall hold onto because we're always questioning alternatives or just needing good advice on these sort of alternative therapies. The blogging community has been so generous in the small amount of time that I have been here. It really does make me feel heartened that this is truly what the world is about - people do want to help each other. Besos y un abrazo (sp?)
Karma - You have your blog nickname, there may be others you're not even aware of:) See, your son didn't talk until three, there are so many children who just wind their own path.
Nice getting feedback and nice chatting. Night all (or morning, as the case may be).
Just for you Karma:
krmtan: Karma takes another nickname!

Mrs. Weirsdo said...

Hey! Thanks so much for commenting on Pansi's poem. You and I have a lot in common--both 40-something mom's with an older daughter, younger son, daughter playing violin.
Good luck to your son. You write beautifully about him.

G said...

Mrs. Weirsdo - I am truly honored. How could I not comment on Pansi's poem, she's a talented young lady. I came to you from Doug's and find your novella intriguing. So nice to hear of our commonalities. Thank you for your kind words.

Minka said...

Late she comes, but she comes :)
Finally I understand what you were talking about. He sounds like a wonderful little person. Thank goodness we aren´t all the same.
And as you probably know, unconditional love is the best medicine. Seems nobody needs to remind you of that, though!
Amazing!

G said...

Minka - Sometimes we do need that reminder to keep us focused on what's important - Julian's happiness and his being able to be the best Julian he can be - nothing more, nothing less.

Thanks for stopping in and sharing. The fact that you took the time later means all the more.