What I've Learned

I wanted to share some wisdom, some things that I've learned in the past two years since Cara's diagnosis. These things I've learned as I walk down the road of being a parent to a child with special needs--

You will...
**always wonder if you are doing enough for your child and second-guess yourself. Would that test have made a difference? Should we have gone with that doctor?
**be your child's biggest advocate and cheerleader.
**appreciate the small stuff. Every little thing that your child learns to do will seem Earth-scattering. You will also feel guilty for not thinking that your older child's milestones were as important. You will celebrate each of these accomplishments with pomp and circumstance.
**redefine normal. Your special needs child will have their own definition of what is normal and you will embrace it.
**discover a new meaning to unconditional love. Your child will remind you daily of what this means.
**learn new ways of seeing things through the eyes of your special needs child.
**live in constant fear of the unknown, of your child getting sick.
**learn that no one knows a child like its parents and you will learn to trust your instincts.
**it does take a village to raise a child and that it is even more crucial when raising a child with special needs. You need a very special team of people to help care for your child and help him or her reach her potential. Your team will be made up of people that you never thought you'd have the privilege of sharing your parenting journey with but now can't imagine not having by your side.
**be prepared to learn a whole new language called medical jargon and to become almost an expert on your child (all his or her diagnosis or conditions). You will be throwing out medical terminology without even thinking and expecting others to know what you're talking about.
**discover every child is unique and that what works for one child doesn't necessarily work for another. This means that you will learn not to compare your child to others and that you will get creative with how you teach things to your special needs child.
**get frustrated, no matter how patient you are or how much you love your child. When we can't control something, we tend to get frustrated, it's natural and it's okay!
**learn so much more than you ever imagined you could from someone so young.
**feel your heart swell with a love like no other.

Cara Lou is a Preschool Girl

From toddler to preschooler in one fast motion. Cara had her 1st IEP facilitation meeting on Wednesday with Child Find through our local school district. We met previously to do the evaluation to asses Cara's needs.

At the facilitation, I learned that Cara qualifies for 4 1/2 day (about 3 hours/day) sessions of preschool at the child development center in our district. She will be in a classroom with 15 other students, half of whom are "typical" and the other half who are receiving some sort of special education. Cara will be receiving physical/occupational, speech and cognitive special education therapies, to the tune of about 3-4 hours a week. The therapists work with students in the classroom setting so that no child feels excluded or "different". In addition, vision therapist and assisted technology will consult with her teachers and therapist to make their recommendations regarding visual safety concerns and the possible need of a low-technology assistance device to help Cara communicate with her teachers & peers.

The program sounds like a perfect mix for Cara--both student & teacher led activities and a structured daily routine. The ratio is never more than 16:2 and is usually 16:3 or 16:4 due to various therapists, volunteers & parents being in the classroom.

I will be doing the actual registration in a couple of weeks, and I'm sure a few tears will be shed as I fully face the reality that my baby is growing up. I just know that she'll love preschool as she is a social child and loves doing activities. In fact, she often wants to stay with Caitlin at drop-off and join her big sister's Kindergarten class. It will be hard for me to trust others in caring for Cara as she has been darn-nearly glued to my side for almost 3 years. Adjustments, and a lot of them, are coming our way soon. I have a feeling that Cara will adapt very well and I will be the one having issues!

Speech Therapy, et al

Cara started speech therapy through Developmental Pathways on Tuesday. While this was basically a "getting know you" chat with her therapist, Angela, I really got a good vibe from her. She seems to care about the whole picture, not just Cara's progress with her oral expression. There seems to be a well-rounded therapy approach, which I really think is beneficial, not only to us, but to the Developmental Pathways team too. The focus of her speech therapy, right now, is to get Cara "talking" more, especially in copying or mimicking sounds. I already do a lot of the things that were discussed, so it seems that we are going in the right direction. I read to Cara daily, talk about what I'm doing (brushing her hair, playing with her, etc) and encourage her to "talk" to me. We are learning animal sounds and common baby words. Also, her therapist wants to introduce some baby sign language into Cara's vocabulary to bridge the gap between her babble and talking. I'm excited, as I've always wanted to learn ASL. In case anyone is curious, I found great website for teaching parents some simple, every day signs. There are also some board books by Linda Acredolo which I am hoping to find at the library. It will be so nice, if Cara picks up on the signs, to know what she is saying, thinking, wanting. Hopefully, it will ease the frustration for both of us.
Her therapist is going to teach me 4 new signs every time we meet on top of whatever I happen to learn in between. I am also hoping to sign up for, and attend, some free sign language classes. I'm actually looking forward to not only learning to communicate with Cara, but to have something mind-simulating to do.
We will be meeting with Angela, in our home, bi-weekly for speech therapy and I'm looking forward to seeing Cara improve.

Cara continues to do well with her PT. We are working on getting her to stand for longer periods of time without locking her knees, getting her to shift her weight from one leg to another and begin to transition into side-stepping. I am happy to report that she stood, playing with her favorite toy, for about 15 minutes and did not lock her knees! In fact, she was kind of bouncing on her feet at times! Such of a big accomplishment for her. She also managed to side-cross step from one table to the other while reaching for a toy. It is so rewarding to see her making progress!

We have her second occupational therapy session scheduled for next week. Our goal in this department is to have Cara using her pincher grasp as well as getting her used to having her palm open. She still does a fist grab for objects and tends to ball up her palms when doing her commando crawl. She is getting better about opening them (as she is on all fours more and such) but still needs some help. We are also working on getting her to use her pointer finger to push buttons and such. She is loving the hand massages that I give her and playing with the Sesame Street pop-up toy that we inherited. "Therapy" is such fun for us!

Turning to something not therapy related...Cara will be going into to see her pediatrician on Monday to investigate why she always seems to be so stuffed up and full of snot all the time. She snorts, sneezes and coughs more than we think is normal. An allergy panel might be coming Cara's way. We will have to wait and see what trusty Dr. Quinn has to say. He hasn't steered us wrong yet. Keep watching for updates.