a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Saturday, August 28, 2010

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.

Friday, August 27, 2010

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!

Thursday, August 26, 2010


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.

Sunday, August 22, 2010

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.

Mommy and Daddy

Friday, August 20, 2010

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.

Thursday, August 19, 2010

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.

Monday, August 16, 2010

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!

Saturday, August 14, 2010


We're trying. We're really, really trying to get this girl back on her feet yet again but it's no easy task. However, it is easier when Rob and I tackle this as a team. I spent this past week trying all I could to get Oia up and moving on my own (while Rob worked) and by yesterday I questioned whether I needed some mental counseling. I was drained and I'm not ashamed to say so. I mentioned Oia just flat out refused for me and I debated if she really remembered how to walk at all.

Bottom line: The casting recovery and then the immediate sprain have collided and combined to create a huge setback. We have resorted back to the very beginning, to the days of cruising and providing maximum assistance with each step she takes.

We have found that she is more willing to take steps when we removed her from the comforts of our home. Home is home and it's no biggie for her to flop to the floor and crawl around but a public place isn't as welcoming that way. So today, off to the mall and park we went.

Fortunately, the mall's indoor play area was not too crowded. She did cruise along one of the play structures but only for a couple of steps. Then she got mad. Since causing a scene is not my thing, we left to fill her belly before returning for round two. Second attempt was better and we were able to keep her on her feet for about 20 minutes. That's 20 minutes more than she had been on them all week. We're calling it progress.

Then, we took her to Build-a-Bear where she could cruise along the stuffed animal bins. This was successful. She moved SLOWLY but she was on her feet nonetheless. Again, we're calling this progress. She cruised and pushed a toy stroller around with our support for about 20 minutes then it was time for a break. We headed home for lunch and nap.

Once she woke from her nap, we took off to the park. There is a paved track where I thought she could push her baby buggy as a walker. She pretty much refused that idea at the start. Again, wanted to flop to her knees and cry. So she swung for a bit and smiled again before we convinced her to walk to the ladder and slide.

In this video, you'll see how I'm supporting Oia on her right side by holding her right arm per PT's advice. The gentle pull I give her is forcing her to put some degree of weight on her right leg. I am giving her quite a bit of support and you'll see her right leg give as she steps forward with Lefty.

Rob and I think that Oia is partly shy of her own legs at this point, meaning she doesn't fully trust them which may explain some of her reluctance to stand and walk again. She has experienced a lot in the last month or so and we can't say that we blame her...but walk on Sweet Girl, we've got you.

Friday, August 13, 2010

Damn Sprain

Rough week. Oia still is not walking since her ankle sprain incident last Saturday. In fact, she basically is flat out refusing it. She may stand when helped to her feet but she bears no weight on her right leg at all and stands crying for help. Any attempt to make her walk is under great protest which results in a fussy Oia flopping to her knees to crawl. We've spent a week trying to work her through this but to no avail. I've hit a wall and feel completely helpless. This is not what I envisioned for her first day of preschool.

Good Bye EI, Hello Preschool

Today marks the official end to Early Intervention; our life of 2 1/2 years, because birthday number 3 is quickly closing in. We have been profoundly fortunate to have had all of Oia's therapies provided within our home (aside from hippo of course) since Oia's diagnosis at 7 months old. EI has kept us above water and provided crucial support during some of our most difficult times. Our schedule of 4 PT, OT, and ST sessions combined in a week is now over but we're onto a new and better chapter called PRESCHOOL.

I had an IEP meeting with Oia's school on Wednesday. The IEP team (Oia's teacher and all three of her new therapists) have been easy to work with and have made the transition into preschool a seamless one. The teacher that we met back in May while we observed the class during school hours is not the teacher there now. My first meeting of the new teacher was on Wednesday and my gut told me this teacher is going to be a good fit for us. I am comforted to know that not only does Oia's new teacher have many years of experience but she too has a daughter with special needs. To have someone understand the boat you're in makes all the difference in the world because to really know this life is to live it.

The safety concerns that I raised after my May observation of the classroom were addressed right away. I shared again through a voice that shook that I had to be absolutely certain that my daughter who lives in a wobbly, often unpredictable world would be as safe as she could possibly be while navigating around her classroom. I was informed that the room had been worked on and I was invited to take a look for myself once we concluded the meeting.

This time, the classroom was like a breath of fresh air. It was neater, brighter, more organized, and overall much safer. It looked like a classroom should look.

Oia will attend preschool on Mondays and Thursdays and will stay through lunch. Monday, the 16th will be her first day. She'll receive OT and PT in some form both days and ST will be provided as well. In addition to the services she'll receive at school, we will continue to see our current PT but sessions will now be held at the therapy center. Oia's PT is too good to let go and she will continue to do CME with Oia. Hippotherapy will resume after Labor Day.

So, Good Bye Early Intervention; thanks for being our life saver. Hello Preschool; take good care of our little girl.

Tuesday, August 10, 2010

Ortho Appointment

The outcome of today's ortho appt is ultimately good news; Oia has a soft tissue sprain at the right ankle. Having the words sprain and good news in the same sentence just does seem right but it certainly is when your ortho doc sends your daughter upstairs to x-ray because he suspects a possible break. So, yes, a sprain is good news.

The not so good news is that she is still not willing or able to walk on it yet. Today is day 3 since the fall and sprain happened and she just tonight pulled herself to stand but only beared weight on her left leg (holds right leg just off the ground) and flopped to floor to crawl again after being up only for a minute. Nonetheless, we call this progress.

Sprains slowly heal on their own but I'm praying for a quick recovery as this little girl starts preschool in just one week. It would ease my momma heart significantly if she was back to her normal self by the time I had to say good-bye and drop her off for her first day of preschool.

The knot on the back of Oia's right knee is believed to be a Baker's cyst. It's not an uncommon cyst and has several causes. Oia's is more than likely caused by the irritation and strain her knee endured during the casting period. There seems to be no apparent need to stress over this as ortho doc said it should dissipate on it's own over time.

We left the appt today with a script for a pair of compression socks. Oia has always had a puffy right foot since she was an infant and often times it is even a lovely tint of blue. She will only need to wear one on her right foot but hours worn in a day is unknown at this point. We finally convinced ortho doc that Oia would benefit from the use of a compression sock since her right foot and toes were barely swollen at all while in the cast and swelling remained at a minimum for a couple of days after removal. It's just one of those CP things we deal with, mainly a circulation issue in her less dominant extremity. I will be calling tomorrow to schedule an appt for her foot to be measured so a good fit can be ordered. Let's hope they make these things in pink.

Sunday, August 8, 2010

Another Setback

After finally getting back on her feet and basically learning to walk again with newly stretched muscles after being casted for two weeks, we are now experiencing another setback. This time, the setback has left Oia off her feet COMPLETELY.

The setback seems to have come in the form of a fall, but we can't be sure. We spent our Saturday afternoon playing at Bounce-n-Play with our friends who were visiting us from NC. A good time was had by all until Oia missed the last step in the toddler play area and came crashing down quicker than I could grab her (and I was standing RIGHT. THERE.) It all seemed to unfold in slow motion. All I noticed was that she landed sideways and hit the side of her head HARD on the floor which was accompanied by a loud thud. Screaming and tears ensued. I immediately scooped Oia up to comfort her but she was stiff and arching her back as if she was in great pain and she was clinching her hands into fists which is not something I've ever seen Oia do after a fall. Her behavior conveyed to me that she got seriously hurt somewhere; maybe even felt pain. Another classic example of why I long for my child to be able to communicate; I had to assume the fall hurt her head and nothing else since that's all I saw.

We decided at that point that it was time to go home, eat a late lunch, and put the little ones down for a nap. I carried her after the fall and all the way to the car. Since that fall, Oia has not walked. Not one step. Every time we've put her to her feet since then, she has lifted her right leg, winced in pain, and even cried. Something is wrong.

She was wearing her brace at the time of the fall so it's hard to believe that she twisted her ankle but I don't dare rule anything out these days. Thankfully, having a husband with medical experience provides me with comfort in questionable times as this but he doesn't have an answer either. We contacted Oia's ortho doctor later that evening and we'll be seen by him Tuesday. Until then, he has told us to keep her off her feet and nurse her needs. She is fine to play on her knees and crawl but that pretty much confines us to indoors for the time being.

Her ankle is swollen as well as her foot. However, this is not really a good indicator of injury for us since Oia's right foot is always puffy to begin with (it's just one of those CP things). Her ankle was warm to the touch today; much warmer than the left ankle. While checking her legs, Rob noticed she does have a small grape sized knot/ball located just under her skin on the back of her right knee. Makes us question whether this knot is a balled up torn muscle or portion of a muscle but ortho doctor says it may not be related to the leg injury issue but instead another issue to look at altogether (cyst, etc).

So, another setback...seems to be all we've been given around here lately. Here we go again....

Tuesday, August 3, 2010

Back on Her Feet

Things have made a turn around for the better and we are heading back in the right direction.

We had our usual PT session last Thursday; about 9 days post casts and Oia was still unable to walk. This was our PT's first visit with Oia since the day of removal (a 9 day gap between PT sessions is not usual, our PT was out of town). Needless to say, I was desperate to see our PT and relief flooded over me when she arrived at our door that morning. Oia greeted her by crawling around the corner to say hi and PT's jaw dropped in disbelief. She looked at me as though something was wrong. I explained this has been Oia's only form of mobility post casts and she was "baffled". Her words..."I would have never expected this; not from Oia".

PT stretched Oia and gave her an overall assessment to see if there was something more to be concerned about other than the newly stretched muscles. She thought perhaps Oia's resistance to walk may be attributed to a torn muscle or even a fracture at some point. She didn't know but knew our little spit-fire should be walking and wasn't. She determined Oia had neither of those things because her legs were manipulated, stretched, and massaged without issue.

Long story short, after two back to back PT sessions on Thursday and Friday last week, Oia is now walking again and back to her old self. She is even pushing up to stand from the middle of the floor. It just took some time for her to feel secure and confident with the new flexibility she gained during casting. The 'new legs' took more time getting used to than we all had expected but in retrospect, what's 9 days when your kiddo with CP can still walk? It's all a process. I'm quickly coming to realize that just because Oia walks a certain way now doesn't necessarily mean she'll walk the same way next year. Her posture and gait will constantly go through phases of change and compensation as she grows. It's just something we take day by day but we never, ever take it for granted.

Our girl can walk and for that, we are thankful.

Sunday, August 1, 2010


We've learned to celebrate all firsts, no matter the significance...even if it is just the first haircut. Nothing dramatic...just a little trim. Miss P will still be bouncing around in her famous ponytail or braided piggies.

This girl has LOTS of hair. And natural highlights that many people pay big bucks for...

First haircut was quick and painless. She did great and earned a strawberry Dum-Dum when it was all over which was completely gone by the time we got back to the car!