Tuesday, October 19, 2010

What is SPD, PT, S&L, SLP & OT?

The central struggle of parenthood is to let our hopes for our children outweigh our fears.--Ellen Goodman
You may recall that July wasn't a good month for me, which makes me a bit sad, because I felt like I missed those few weeks of wonderful summer (I guess I get to try again next year). Anxiety & fear flooded my system and spiraled a bit out of control. After dealing with the culminating fear, anxiety & upset stomach, I did two major things to combat it. First, I called my wonderful counselor that I hadn't seen in about a year. Second, I did the unthinkable and joined the intense gym, Jogo Crossfit, I now know & love. A couple things I learned through this experience (and am still learning).

1. Exercise in this capacity has been a breath of new life & rejuvenation (even though I cannot see it when my alarm wakes up at 5:20 am).

2. There are stories, memories & experiences one can have from childhood that don't completely come up until you get older (call it psychological delay of sorts).

3. Death is not to be feared, it's something that happens & I know my future is glorious.

4. No matter where my mind races with my oldest, little girl, I can be mindful of what I know about her right now.

5. And five, being mindful of the present is so much more worth living than anxieties of tomorrow.

So what do I know about today?

We have seen a myriad of specialists regarding Veronica and where she sits on the "developmental charts." She is labeled with a developmental delay in some cognitive areas, along with gross motor & some speech. She's been tested through the public school system (contributing taxpayer money at work) with a cognitive test & a speech test. Next Monday, she will receive a test from the Occupational Therapist (OT) as well. The following Monday after that is when we will sit down to hear about all the results.

What does this mean?

In March, she was referred by her doctor to receive a Speech & Language evaluation, along with a gross motor evaluation. Her S&L eval came back within range, while her gross motor did not. In June she was referred to receive support for her overpronation (ankles turning out) through orthotics (braces on her ankles).

Essentially, she has weak ankles and needs extra support to strengthen them. She is suppose to wear them 8+ hours a day for 6-12 months (possibly longer). Her physical therapist (PT) Jill, who is absolutely wonderful, has diagnosed her with low muscle tone. She also sees some proprioceptive & vestibular issues. Proprioceptive & vestibular is related to Sensory Processing Disorder (SPD). We commonly think of simply five senses; however, those are merely the external ones, while the internal ones are the proprioceptive & vestibular systems.

Proprioceptive System deals with the joints & muscles, while the vestibular system lies within the inner ear and deals with gravity. Now, there could be an individual who is either hyper- or hypo-sensitive in dealing with these two areas or the other commonly known five senses. However, a person could show some signs of hypo AND hyper. It's not a this or that sort of set-up all the time (hence why we are all unique creations). She shows signs of hypo-proprioceptive issues, which also affect some of the external senses. She needs to do exercises to build strength in her core, due to low muscle tone; as well as, incorporating a sensory diet to tell her central nervous system how to function.

Veronica will get tested with the OT next Monday. OT's work with fine motor skills and everyday functioning skills. So she will be testing Veronica on her fine motor, functioning (toileting, zipping, eating, etc), and SPD. Jill is not authorized to diagnose Veronica with SPD, because it is out of her jurisdiction; however, the OT can.

How did we get here?

I ran into a friend of a friend at a dance class this summer and reintroduced ourselves. She noted V's braces and said, "the only reason I said that is I notice those things, because I'm a Special Ed ECE (Early Childhood Education) teacher." We got to talking and one thing led to another with her giving me her number if I wanted any information on how to get V help.

Now, I'm personally not one to enroll my 3 year old in preschool for various reasons. However, one of the reasons is my lack of confidence in someone instilling the appropriate care for this unique, special little girl. I know her quirks and that she is a bit different (not always a bad thing). So, I wouldn't have confidence in a person who is responsible for 9 other kids to care, along with giving my girl the amount of care & attention she needs.

So--why not just care for her at home? Well, this is where all this testing, evaluations, screening, paperwork come in. Veronica qualified to get into the Special Needs ECE preschool through the public schools, which would meet 2 1/2 hours a day/4 days a week. As a mom who has seriously weighed in the options of homeschooling, I feel like I would be doing my daughter a disservice to rule out receiving extra help at this stage of the game. And the only way I would have confidence in someone giving that care for this unique little girl, would be a Special Education ECE teacher, who had additional Instructional Aids (IA) in the classroom, along with a PT, OT & SLP (Speech Language Pathologist) working with her every week. That's what she would get.

Not only that, but at this young age of 3, her brain is still very malleable and able to correct itself. Kids with SPD or other related delays (previously mentioned) have a higher success rate if addressed earlier in life (age 3) versus age 9. To put this into perspective, Veronica's central nervous system is a bit out of whack, which inhibits her from participating in daily functions (eating with utensils, putting on clothes, understanding requests or questions asked of her, etc), communicating in a social/emotional way (joining in play with others, lacking the confidence, etc) and being able to fully move & play (walking down the stairs, hopping, running, etc).

Where do we go from here?

We will meet with the school psychologist, SLP, OT, PT, & the Special Education ECE teacher, to draw up an Individualized Educational Plan (IEP) and get her started in the preschool. This will start for her in November sometime, but don't know when. After she did the cognitive test a couple weeks back, the school psychologist scored it there letting me know that Veronica scored 2 points below the mean, which automatically qualified her to receive Special Education services for three years. She also let me know that Veronica scored "normal" on her verbal, which is the best thing you want to see for a child, because their ability to communicate above all other areas cognitively shows the highest signs of success.

How am I dealing with it?

I sat there trying to hold back the tears, but you can't hold back the flood. I wasn't crying because I was told my daughter had a "developmental delay," or that she might possibly have a harder time functioning in life. My tears were ones of joy. I have been looking at this special little face for years and in the past two (or more) thinking, "something's just not right." Feeling like I was the only one to see it--it helped me feel sane. It affirmed that there is a little thing called intuition which should not be thrown under the rug. It gave me hope...for her.

When we go to see Miss Jill, there's this little girl who blossoms. She's absolutely beautiful and sometimes I have to hide my face. I hide it because I'm ashamed for believing lies, which say, "being different is bad...being different is abnormal...being different is less than what God created...being different is hard to love at times, etc." There have been so many thoughts of comparison with other children, wishing that everything was "normal" and even embarrassment. As I've been walking along the path of internal healing from my own past hearing God's voice saying, "I delight in you...your worth is far removed from your abilities & gifts." And then I heard him talk about his love for Veronica, which continues to pierce my heart, "Her worth is not dependent upon her physical prowess, ability to achieve 'milestones,' or anything measurable by human standard, but simply because I created her in my image & she as my creation is not just good, but very good."

And what I know about her now is seeing a little girl who is a bit inhibited on one side of the bridge wanting to cross, but out of inability & fear, she cannot embrace the beautiful grassy meadow filled with wildflowers on the other side of the bridge. Where she can dance freely knowing her worth, like a picture of heaven. I have seen glimpses of her walking toward the meadow--blossoming into who God designed her to be, and I know Ben & I simply want to encourage toward that path.


Stacy said...

I love that second-to-the-last paragraph... where you say you are ashamed for believing the lies... struggling with thoughts of comparison and even embarrassment.

BUT God created us and delights in us all. And that's the glorious truth.

How He is shaping you, too~ by being Veronica's mommy and teaching you all these things! I love it. And I can't help but think He is going to use it mightily for His glory as you will be able to reach out and encourage others with the things He has shown you through this!

Kamille Corrina said...

thanks Stacy--I'm certain too that God will (and currently is) use this not only shape me, but help others in the process. I'm excited about that part.

Paige said...

I appreciate that you wrote this out for those of us that don't understand it all. Kamille, I really admire you. You are an amazing momma.

I am excited to see Veronica dancing in the meadow and using her story and journey to bless those around her!

Kamille Corrina said...

Paige--thanks:) I know that although I've read up on this stuff, it doesn't make a lick of sense to even the relatives at times either. Glad to convey it.

And thank you for your comment--we're all given bumps in the road and I'm constantly amazed at many others who deal with what they deal with (you being one of them).

I'm excited to see how all of our children will use their story and dance in their meadows--it will be exciting to witness.

Stacy said...