Beating the Odds

In recent years, I've stumbled upon a startling statistic that roughly 80% of all married couples raising a special needs child end in divorce. That's alarming and heartbreaking all at the same time, but not surprising. The constant emotional and financial strain is often too much for one couple to handle. The special needs world provides a continuous and often unwelcoming ride of emotional ups, downs and all arounds and if we're not holding on tight, we're guaranteed to be knocked off.

Although I would never dare say that Rob and I have it easy, I do know we have a lot to be thankful for. We have more than enough to fight for, to celebrate, and to keep alive as long as we can. We have chosen to check our grips daily, hold on tight and tackle this life as a team. We may have our moments but at the end of the day, we are still best friends ready to do it all over again. Two people who have found balance. Love and Oia; our glue.


Somehow, we're doing it. We're beating the odds and making it work; one day at a time. We've accomplished a lot in our 12 1/2 years together and today marks our 6th year of marriage. But who's counting? We're just ready to face whatever comes next... and looking forward to whatever that may be.

Happy Anniversary, Rob. I couldn't make sense of life's craziness without you. You always have a way of making everything just a little bit easier.

A Day at the Museum

We recently spent a day at The Children's Museum of Richmond at Short Pump. This is the best museum suited for toddlers that I have ever been to. Oia had a blast. Actually, Rob and I did too. We let Oia roam and explore as she pleased. Rob and I were merely her spotters, keepers of her safety. A fairly new thing for us. She navigated the museum with minimal assistance; us mainly assisting or spotting her on steps and unlevel surfaces (mats, ramps, etc). She did great.


There was a Wild Safari Train (which Oia did not care for), a water play area, bouncy whales, a Jack and the Beanstalk themed jungle gym, a 2-tiered pirate ship, a 'sand' box, a toddler garden, a play stage, and a HUGE crafts room for the older kids. The Jack and the Beanstalk jungle gym was Oia's favorite, particularly its slide.



But this was really the way Sassy preferred to go down the slide each time...


Fine with us. It was fun and good therapy all at the same time!

Meeting

I had all weekend to fume and stew over the comments that were shared with me regarding Oia's 'touching' on just the second day of preschool; which was last Thursday. My fiercely protective instincts that weekend were at an all time high and I could have downed a bear in seconds, no doubt.

So come Monday's drop-off, I informed Oia's teacher to check her schedule and find a time that we could discuss some concerns of mine. She agreed. At pick-up that same day (I pick-up Oia at noon), she asked if I could come back around 3 after her last student leaves. I agreed. No time like the present.

I returned on time at 3 with a mental agenda to run through. I'll tell you, I've held hundreds of meetings/conferences before, but as the role of teacher, never as the parent. Whole new ballgame that is...I was nervous sitting on the other side of the table, so to speak. PT just 'happened' to be in the room filling out paperwork when I arrived, but good for me, I had questions for her too and I'm all about killing two birds with one stone.

In a nutshell, teacher explained where she was coming from with her comments. Since Oia is wobbly on her feet teacher is concerned that Oia could get bumped or knocked over easily when the other kids shrug her, therefore jeopardizing her safety. Apparently, there are some kids with sensory issues in the room and touch is a problem for them. I respect that. Moving forward.

My stand was simple in request. I shared that I walk a fine line when it comes to telling Oia 'no' when she has gestured or touched a kid as a way to communicate and interact with him/her. Being told no may discourage one of the only ways she communicates and discouraging her would hinder an already significant language delay. I reinforced that I viewed this touching and gesturing as partly a curious behavior (which is age appropriate) but also part of a natural progression of language. Teacher agreed. I requested that the desired (hands-off) way to communicate be modeled for Oia, along with giving her a key word or two to try and use in place of a tug or touch, all the while informing the classmate what Oia is asking or trying to say to them. It really only takes seconds to do this and eventually, one day, she'll get it.

Teacher stated that Oia is having a hard time transitioning to preschool, though she admits she is still just a "baby" and that this will take some time. Preschool has proven tough even for our social butterfly. First day was fairly smooth but subsequent days have been worse. The fact that she goes Monday, then off for 2 days, goes Thursday, then off for 3 more days makes the transition harder to get used to. Suggestion was made to send Oia another day of the week to give her more frequent exposure in hopes of making her more comfortable sooner. Rob and I are on board. Beginning next week, Oia's new schedule will be Monday, Wednesday and Thursday, 8-noon. Tuesday's are open days for playgroup, appointments, etc. and Friday is our private PT day.

On to the PT part of the meeting. Oia's IEP lists the minutes per week/month that each therapist should be working with her. I have no doubts that they will follow this plan but knowing what therapists she works with each day is something I would like to know, without having to ask every day. (I send Oia on Mondays and Thursdays because these are the days that all 3 therapist are at the school together.) I can't depend on Oia to tell me who she worked with or what she did so I mentioned I'd appreciate some checklist or note telling me the bare minimum; who worked with her and for how long. And because I am acutely aware of the amounts of paperwork that teachers are responsible for, I even volunteered to make the sheet for them. PT agreed to fill out and send home with Oia whatever I make. Sheet is made, copied, and ready for Monday.

Teacher thanked me for coming forward and discussing my issues. Overall, we ended the discussion on the same page. I truly believe this is a teacher who wants what is best for Oia and for all of the students, despite my moment last week. I had no problem with her message, but rather it's delivery. Personality differences, I guess. Bottom line is this: They know who I am. They know I'm paying attention and I may even have the potential to be a pain in the ass. But more than that, I am here to work with them, not against them.

And if that's not enough, Rob represented us at our county's Special Education Advisory Committee the following day. Now they know the both of us.

Dear Oia

You were loved long before we knew you.
You were carefully and thoughtfully selected for us as a couple.
You were creatively tailored to make our lives richer.
You are small though your purpose is big.
You work magic everyday.
You are by far the best teacher we've ever had.
You highlight the good in this life just by being you.
You are our bright spot.
You are a brave preschooler.
You understand hard work.
You fall and get right back up.
You inspire and you are strong.
You have no limits.
You warm the hearts of those who know you.
You are perfect just the way you are.
You are our most precious gift; leaving us to wonder what we ever did so right to deserve a daughter like you.


Today, you turn 3. We are honored and proud to be your parents. Thank you, Oia, for the most amazing three years of our lives. May you be blessed with many, many more days that add up to many, many more fulfilling and happy years.

Happy Birthday, Oia Lee! We love you more than you will ever know.

Love,
Mommy and Daddy

Good News

Oia is back on her feet and walking again! Praise the Lord. We doubled up on therapy this week and have spent a lot of time out of the house so she'd be less tempted to crawl. The mall, several parks, and even the baby doll isle at Toys R Us have all been our grounds of therapy and source of motivation in the last two weeks. We provided her with as much assistance as she needed until finally she needed no more. Little Miss has turned a corner yet again, not quite back to 100% but pretty darn close. She has worked so hard. The sprain seems to be behind us now and we're not looking back.

Not Already

It's no secret that Oia has a significant expressive language delay. Her verbal communication skills are in the ballpark of 1 yr old. She has roughly 30-35 words that she is consistently able to articulate and relies heavily on gestures to address her wants and needs to those around her. Gesturing is a fairly new skill for her which has made our lives a little bit easier, as one can only imagine. Pointing is another one of her very new skills. Developmentally, babies learn to isolate one finger and point by 12 months old. Oia is just shy of her third birthday and is finally perfecting a good point.


Oia's gestures are important to us and we view them as a step forward in her communication. We are also thankful Oia even has the ability to 'speak' to us in such a way. CP can rob a kiddo of many functions, even a simple hand or arm movement, so I consider ourselves fortunate that Oia can point at what she is talking about or tap a chair to indicate that she wants you to sit beside her. Sometimes the gesture may be a tap on Rob's head after she's just handed him a hat indicating she wants him to put it on. Sometimes the gesture may be gently pushing you in one direction as she is 'telling' you to come with her. Sometimes she cups her little hand around your chin to turn your head in her direction because she wants you to look at her or she has something very important to show you. The gestures are little tugs at our heart that make us smile with pride because she has found a voice through her hands; and quite frankly, because she can do it at all.

On the other hand, kids don't view Oia's gestures the same way. I respect that. Preschoolers are very egocentric and most have little to no room in their world for others. This is why sharing is so hard for preschool aged children. However, being egocentric is age appropriate.

Which leads me to this...
I picked Oia up from school today and when she saw me her faced washed with relief and she began to cry. She threw her little arms up and wanted me NOW. She pointed to the door and uttered a "go, Mommy, go" through a couple of tears. Not the same face I got on Monday. She wanted to go home. Her teacher told me that she began to get a little fussy about 30 minutes prior. Then, she proceeds to tell me that Oia has been "touching" kids a lot. So excuse my indecent mind but I asked, "What do you mean by touching?" She tells me Oia has been pulling on kids, tugging on their shirts, and even "annoying" them and specifically shares with me two classmates who had had their fill of Oia today. I was frozen for a minute, not really believing that she was having this conversation with me. Then, she tells me that if Oia does this type of thing to the wrong kid, she'll end up getting hit (I think the word she used was "decked" but I'm not certain as her words made me numb for a moment.)

Really? I wanted to say in reply Did I really hear you correctly? Here's a news flash for ya...My daughter is trying to socially engage herself in a new environment with new people, without the help of people she knows AND without the appropriate language skills to do so. She is doing the best she can. In Oia's world, pulling on a classmate translates to "Hey, come play with me!". What's so wrong with that?

And the kicker in all this is that I specifically mentioned in her IEP meeting last week how Oia communicates through gesture and that I was concerned how her peers would perceive this. They assured me this was typical behavior and no big deal in this classroom as teaching social skills was a major focus in preschool. So, I expressed this fact prior to school starting and she still had the audacity to bring it to my attention today on only the 2nd day of preschool and act as though this is a major problem. The part that has made me sick all day is that apparently they are not allowing this behavior. They tell me that Oia gets very hurt and cries when they tell her "No". This equates to Oia as not being allowed to talk her classmates because essentially talking is what she is doing through gestures.


I'm upset. Actually, it makes me sad for Oia. She is in a classroom where differences should be embraced, not punished. I can guarantee Oia has NO IDEA what she is doing wrong, and truthfully, it's not wrong. There are many ways to communicate and I would hope that any adult working in Oia's classroom would take the time to turn such a situation into a teachable moment for the classmate that is being "annoyed" and let this be a time to teach compassion. Inform peers that Oia doesn't 'talk' like everyone else and she is trying to play too. She is not trying to hurt anyone but instead being curious and hopeful to make a new friend. I also would hope that the adults are modeling the desired behavior by providing the words that Oia should use instead during these interactions rather than tapping one's shoulder and "annoying" someone.

This is a special education environment. Oia's only means of communication shouldn't be an issue on Day 2 of preschool. Maybe in Kindergarten or even later, yes, but not right now. I feel a meeting is in order.

Big Day

Today was THE day. Oia and I woke early and had our morning staple of yogurt and cartoons while cuddled on the couch. Then, I quickly dressed this big girl of ours in her new preschool outfit, braided the piggies, snapped a couple first day of school pictures, grabbed her tiny backpack and lunch box and on the way we were...all the way to C Elementary for Oia's first day of preschool. Daddy even left for work a little later than usual to send us off and to wish Oia a good day.


We arrived at 8. Oia was the third kiddo to arrive. I carried her in and knelt down by the little table where her teacher was seated with the two other kids. Then immediately Oia's sixth sense kicked in and she buried her head in my shoulder and held on for dear life. She knew I was leaving without her. Out came the bottom lip, her face turned red and she said a very soft and pathetic "no". I assured her I was not leaving just yet and asked her to sit at the table to play with the Play-Doh. She did. Ms. J handed her a ball of yellow Play-Doh and Oia said 'thank you'. I handed off all the classroom supplies that were requested to the assistant. I passed on her lunch box and backpack and whispered to the assistant that there was a binki in Oia's backpack should the morning get rough...you know, just in case. Oia tapped on the seat of the chair next to her as her way of telling me to sit beside her. My years of teaching taught me that a lingering drop-off is harder than a quick one, so it was best I not sit down. She began to play again with her Play-Doh and then I kissed her forehead, told her I loved her and left moments later when she wasn't looking. I felt a lump well in my throat once I left the room because I felt like I had just abandoned my daughter but the tears stayed at bay. I drove back home feeling proud; a little lonely, but proud.

I anxiously returned after lunch to pick her up. Ms. J said Oia had a good day. I was relieved. She told me Oia did get a little upset after she realized I left her this morning but she recovered quickly. This is the face that greeted me the very moment I walked into the classroom for her pick-up...


She may not be able to 'tell' me all about the events of her day but this face told me all I needed to know. It was a good day indeed!