Conductive Education - 2nd Camp

Grace began her second Conductive Education camp last week. We saw so much success from the first one so we are so excited to be able to enroll her again. This camp has a total of 8 children with 2 conductors and 6 aides. I was a little overwhelmed seeing so many children since there were only 3 in the last camp. I was worried that Grace wouldn't get enough individual attention but each child has someone working with them at all times. She continues to get stronger with floor movement as well as walking.

Not only will CE be good for Grace, it is also a good thing for me. I am able to meet and interact with the other parents. Even though the disabilities/abilities vary among each child, the parents are experiencing much of the same things...grief, confusion and many times frustration. It is comforting to know that you are not the only one on this journey and someone understands.

We have pre-enrolled Grace for a full day camp in July. Thank you, thank you to everyone who helped make this happen for Grace...you know who you are.

Another Day at the Arboretum

Mommy and Me Mondays at the Arboretum has become a regular thing for us. Since Grace has started Conductive Education she is unable to go with us and we miss her. I have been taking 2 of the 3 cars on our Choo Choo Wagon with us and it is a big hit with ALL the kids. Mack and Andrew love to just pull/push it around. Sophie is fascinated with the face painter but still won't let her face be painted, even after we stood in line for 30 minutes. It's a lot of fun...come with us!

Caroline goes for a ride with Andrew pulling, Mack pushing and Sophie guiding.

Sophie watching the face painter.

What's a Bully?

Friday I met with a representative of Dallas Public Schools to discuss PPCD (Preschool Programs for Children with Disabilities) for Grace. (I want to discuss the meeting in detail but I think it deserves it's own posting.) Based on the preliminary evaluation of Grace's cognitive skills she may not qualify for the traditional PPCD setting. This is actually a good thing as Grace's cognitive skills seem to be on par with her peers and I will probably put her in preschool with her siblings (yahoo!).

Anyway, we also discussed what elementary school might look like for Grace in a integrated system, such as Dallas has. It all sounded really good and acceptable but as I left the meeting I began thinking about how the other children in school will treat her. Even though we are very hopeful that she will walk, she will most likely appear different in her motor abilities than others. Will the other children be able to see past the physical differences and embrace her? Will she be included in the popular girls' groups? Will she be bullied?

My parents tried to teach me and my brother and sister many things when we were growing that I am so thankful for. Some of these things included empathy, compassion, respect, love for mankind. We were always taught that we were no better than anyone else and that everyone should be treated the same. Unfortunately, not everyone feels that way. In school, I remember several bullies...people that picked on or mistreated others that were different than they were, whether it was their height, their weight, their IQ, their color or just any little thing they could pick out. Why does someone become a bully? How should we respond to bullies? Have you ever been bullied? I don't know the answers but I like what David and Kathryn have to say about it here and here

Isn't She Lovely

We are so excited! Grace started her 2nd Conductive Education camp this week (more on that later). She will go every day for 4 hours for 4 weeks. We tried going the full 6 hours but she still needs a nap (who doesn't? :) so we will wait until July to attend a full day. After her 4 hour "work-out" she gets a great nap!

I love watching her sleep. She is so beautiful (I know I'm biased). She also looks so peaceful and so "normal". There is no struggling to crawl or walk or sit-up or eat with a spoon. There is no longing in her eyes as she watches her siblings running around and asks to walk. Unfortunately I still feel the worry and the longing and the pain but she sleeps...all is well with the world.

Everything comes in 3s

It all started last Thursday with a trip to the emergency room. I won't go into all the details because everything is fine and I may have just become a little too hysterical with my judgment being impaired. Grace during her hippotherapy session starts screaming uncontrollable and...well I'll just leave it at that....she is fine. As Abe and I are waiting for the doctor, we talk about how lucky we have been that this is our first trip to the emergency room and that we really thought our first trip would be with Mack.

On Monday at the arboretum, Sophie decides to try to climb into the stroller and falls, face first, onto the concrete and now has a huge knot and bruise on her forehead. (Oh, this is also the day I have to take her into CE with no clothes on...she threw up all over her clothes...to drop Grace off...I got a lot of strange looks.) So that's number two...

Yesterday my friend Jackie phones (how does she always seems to know when I need her). "What are you doing?" she asks. I reply "I'm trying to figure out how much blood I should see before I take someone to the emergency room." She immediately leaves work and comes over (Thanks Jack!) We had just gotten home from school and I while I'm unloading everything out of the van (that's the really cool red minivan) and depositing it all in the house, Mack starts screaming. I roll my eyes (I'm such a awful mom) and head into the family room where Mack is standing with blood all over his face and the floor. I pick him up and try to assess the damage and try not to pass out. By the amount of blood, I am honestly expecting a huge gash across his head. Luckily it is only a much smaller gash. I still haven't gotten anyone to tell me exactly what happened but it looks like it hit it on the corner of something...maybe Grace's stander or a cabinet...I'm not sure. He will probably have a little scar on that perfect face but he's okay.

Okay, we should be done with bumps, cuts and bruises for a while. With 3 two-year olds do you think that is possible? Hey! I hear you laughing. HAHAHAHAHAHAHAHAHAHAHA

Planting Flowers

I know I promised some photos and there have been complaints, but I'VE BEEN BUSY :) Today we planted a few flowers in the front of the house. Whose brilliant idea was it to a family occasion...oops, that was me. Actually it wasn't too bad. Only a few plants were crushed by Mack as he tried to help plant them. He loved it and he really tried to do it right. And there was only one temper tantrum (yes, Mack) thrown in the flower bed. He was filthy. And there was only spanking...Sophie ran into the street. All in all it was a good time and we have a few pretty flowers that survived ;)

Oh, The Guilt!

Guilt...it is all part of parenting. Whether you have a child with special needs or not. For me the guilt involves not spending enough individual time with each child, not reading enough to them, letting them watch too much TV, not being involved in more activities, and generally just being a lousy mom. The guilt involved in parenting Grace involves all of those and more. There is the feeling that I'm not doing everything I can for her. Is she participating in the right kinds of therapies, are we seeing the right doctors, do I have the right equipment, am I doing the right thing by putting her in main stream school?

One of Grace's therapist frequently tries to absolve me of some of this guilt. It not so much that I voice that I feel guilty, but he can tell by the million questions I always ask that I am wondering...am I doing enough...am I doing the right things. No matter how many times he tells me "Jacolyn, you are doing so much more that most parents even attempt to do. You are doing everything you can and should for Grace", I don't think I'll ever feel adequate. I will probably always blame myself if she never walks or has no self confidence or isn't happy. How can I love someone so much and fail them so miserably.

God, be my guide.

As for me, I will call upon God,
and the Lord shall save me.
Evening and morning and at noon
I will pray and cry aloud,
And He shall hear my voice.
He has redeemed my soul in peace from the battle that was against me,
For there were many against me.
Psalm 55:16-18

Too Funny...

at least I think so anyway.

Thanks Kathryn...I needed a laugh today.

My Morning in a Nutshell

It started off badly when I overslept. Thankfully we didn't have any appointments but if I don't get up early, get to the gym or to Starbucks, or just get myself composed before the kids get up, then everything just seems downhill from there.

Mack throws a fit after Abe leaves for work. So as he is screaming Daddy!!!, I am trying to get Grace hooked up to the e-stim machine. Sophie is trying to help. Grace is screaming NO!! Finally get her electrodes on and wrapped into ace bandages and into the stander. Mack climbs on the stander and Sophie tries to get her out of the stander. 30 minutes later we get her out and attached her to a board to work on tummy time. She is still screaming "NO" while Mack and Sophie are fighting over a blanket. "MINE!!! I WANT IT!!!" So, I start screaming, "THERE ARE 2 BLANKETS, GET YOUR OWN AND WORK IT OUT!!" while I'm trying to convince Grace that the being attached to this board is really fun. Then Mack crawls on my back screaming "Thomas Thomas" Now Grace wants the "Barn Book". Do we have a barn book?!!?

So, now my hands are shaking and I'm about to stick my head in the oven Sylvia Plath style...and that's my morning.

More on Scottish Rite

Well my excitement about Scottish Rite is rapidly dwindling! It appears that the AFOs from SR may not be the best thing for Grace as they were casted with no consultation with our PT...so much for free AFOs! UGHHHH!! Anyway, we are going to go ahead and get them and if they don't work we will go another, more costly, route. I'm getting to the point where nothing suprises me anymore when it comes to the procurement of costly equipment for my daughter. I am still excited to have access the their orthopedist and neurologist, so all is not lost.

I know you are all missing photos of the kiddies...so check back soon.

Scottish Rite

About 8 or 9 months ago our application to get Grace into Scottish Rite was rejected. I was devastated. It seemed like we had so many doctors and therapists and equipment suppliers and they were all at different places and it was becoming increasingly difficult to get everywhere and feel confident that Grace was seeing everyone and getting everything she needed. The primary purposes for us seeking to get into Scottish Rite were twofold...1) make sure that every medical area we needed to address was being covered and 2) everything at Scottish Rite is provided at no cost (equipment, procedures and doctors are so expensive).

So over the past 9 months I had reconciled myself to the fact that we weren't getting in and that it was okay. We were working through everything. Well, we are now in!!! We got a letter about a month ago with a scheduled appointment, which was yesterday. We meet with a team of doctors and therapists including an orthopedic doctor who confirmed that Grace's hips and spine were growing properly (Thank you God) and right now we don't need any orthopedic services but she will be followed by this doctor through their neurologist that we will meet later. He did say that Grace needed to have new AFOs as she has outgrown her others. Folks, this is another good thing....they casted her for her AFOs right there!!! We didn't have to make another appointment or go to another place. I was so grateful!! Thank you Scottish Rite!!

April 15

Can't talk now...busy doing tax returns. Don't forget to file yours. TTYL

Grace and Crunchie

Every Thursday Grace and I drive out to Wylie, Texas for hippotherapy. It's a 40 minute drive there and back so Grace and I get some alone time. We usually jam out to the Wiggles or Prince or Jack Johnson...depending on what mood we are in. I enjoy our mornings at Equest. Maybe it's the country girl in me, but I love the sounds and the smells in the stable. Grace loves it too. After the first two sessions she decided that Crunchie (her horse) was great and riding was pretty cool and there has been no more crying. The first 10 minutes of the sessions are spent attaching the electrical stimulation device and doing some stretching. This is not her favorite part of the morning and she just wants to see Crunchie as soon as possible. After the stretching she rolls into the stable and gets to ride. I love seeing the smile on her face! She and Crunchie are a wonderful team.

Getting ready to ride! The technical device on her back is attached to electrodes which are stuck on her adductor muscles.

Just a little trick riding. She rides in different positions during the session. This week was the first week she rode standing up. She loved it! My little dare devil. (The woman in aqua is Grace's physical therapist and the other ladies are volunteers who work under the PT's instruction. They are all so wonderful.)

Check out that sweet face. She is so proud!

Walking Crunchie in from the arena. Way to go Grace and Crunchie!

A carrot for a well deserving horse.

Tag

I loved playing tag in elementary school. It was kind of scary though because if a boy tagged a girl they tried to kiss her. I had a lot of anxiety about this because I was really scared of kissing a boy. If caught, I would kick the boy in the shin....and I wore cowboys boots...oohhh, that should have been one of my 7.

Kat at Story of My Life has challenged me to a game of tag... with no kissing :)

Here are the rules:

1. Link to your tagger and post these rules on your blog
2. Share 7 facts about yourself on your blog, some random, some weird.
3. Tag 7 people at the end of your post by leaving their names as well as links to their blogs.
4. Let them know they are tagged by leaving a comment on their blog.

I'll give it my best shot...

1. I do many things while following a "Delayed Gratification" philosophy. The means that you get the hard, bad or annoying stuff out of the way first then you are gratified at the end by doing something more enjoyable. As an example...I eat the crust of a sandwich or around the edge of a cookie first because I like the center part the best. In addition, when parking in a parking garage I drive to the top and then around to find a place that will allow the shortest departure out of the garage.
   
2. My Chickasaw Indian name is Fochik Tuthina. Can you guess what it means?
   
3. In high school I was elected FFA (Future Farmers of America) Sweetheart. I had a white corduroy jacket with the FFA emblem on the back and my name embroidered in front. It looked really good on me with my 1980s permed mullet.
   
4. Another food one...If I equally like all the food on my plate, I will eat it in equal amounts so that the very last bite contains a small amount of each item.
   
5. I had so much anxiety about doing this exercise that I dreamed about it last night. In my dream my list of seven were much better than this...that is, if wanting to marry Jerry Seinfeld and convert to Judaism is more exciting. Hmmm...don't know where that came from.
   
6. I refuse to buy magazines such as People or US because, well they're crap and I'm morally against them :). However I will dig through every magazine in a doctor's or therapist's office to find trashy magazines. I love them!!
   
7. See intro above.

Now it's your turn:
1. Krista at Galli-Ringo Family
2. Angela at Busy-Lizzy
3. Trish at My New Normal
4. Kelly at Lambert Boys

That's all I've got...all you other people need blogs!