Intentional Communication

Very early this morning I heard Julia "talking" in her room, so I went in to get her. I took her back to bed with me and as we lay there I began to talk to her about her day. I was amazed at how much she understood!

Me: Julia, do you know what we're going to do today?

Julia: Shakes head no

Me: You're going to go to school!

Julia: (5-10 second delay) signs "school-Lisa (her teacher)-work"

Me: Yes! That's right! You're going to school to see Miss Lisa and you'll do some work there. Do you want to go to school?

Julia: Nods yes

Me: Then do you know what we're going to do?

Julia: Shakes head no

Me: After school we're going to see Miss Stephane. (Speech Therapy)

Julia: Puts her finger in her mouth (her sign for oral motor work) and signs "work"

Me: You're right! You're going to work with Miss Stephane on talking and signing. Do you want to see Miss Stephane?

Julia: Nods head yes

Me: Then we're going to Easter Seals to see Michelle! (Physical Therapy)

Julia: BIG grins and claps

Me: Do you want to go play with Michelle?

Julia: Vigorous nodding and clapping

Me: AND you're going to go swimming with Michelle. Do you want to go swimming?

Julia: Vigorous nodding, clapping and loud vocalizations.

SO...all of this from a child that wasn't "supposed" to communicate much, if at all! HA!!! I am so thankful and proud of Julia!

One last incident:

Last night in choir practice Julia was having a drink from a water bottle. We had to stand and go over a part and so I put the water away. While we were standing she began to sign for "drink" over and over. I told her that I would give her a drink when we sat down.

Normally this would not deter her...she would continue to sign until she got what she wanted. I was surprised when she stopped asking for a drink. It took several minutes for us to finish the part and sit down.

THE MINUTE we sat down Julia tapped me on the arm and signed for "drink."

I'd say she understands...wouldn't you?!

JUST GOTTA TELL THE WORLD...

Today in PT at the Easter Seals Clinic, Julia blew us all away when she took SEVEN TOTALLY INDEPENDENT STEPS!!!!!! Michelle (PT) was "shadowing" her closely, but she was not touching her AT ALL when Julia walked towards me!!!! Of course, we didn't have the camera handy, and even if we had it happened so quickly I don't think we could have gotten pictures...but it will forever be emblazoned on my memory...trust me!!!!!

I know this doesn't mean that she will be running marathons next week or anything, but it demonstrates so much progress we are thrilled.

Something I am learning is that all of the body's systems are completely integrated and affect one another. Julia's fine motor and speech cannot significantly improve until her trunk is stable and midline is integrated. All of the "fine" skills grow out of stability in the gross motor skills. If all her attention and energy is directed toward just keeping herself upright or balanced there is little left over to focus on speech or controlling her arms, hands and fingers. I realize this is a very rudimentary explanation of a concept I am just beginning to understand myself.

Either way...JULIA TOOK SEVEN INDEPENDENT STEPS TODAY!!!!! HOORAY!!! Handclaps, cartwheels, high-fives and all that!!!!

Oral Motor Tips

Julia at 17 months with her Chewlery

I have noticed that I am getting a lot of email from Julia's website about oral motor. I wanted to do a post about oral motor and some of the tips that help us with Julia's inappropriate oral behaviors.

These are a few things that have worked for us...Julia is extremely oral and will bite/lick/chew anything she can get her hands on including the cat! She bites herself, pulls out hair to run between her lips, chews rocks if she can get them...it makes for some interesting situations! She also is a dedicated teeth grinder.

We have found that these tips help us to manage the negative oral behaviors, and have been gleaned from a variety of sources...her therapists, various seminars we have attended, and other parents of children with CDC.

While these things may help us to manage the behaviors, I find that the most successful way is to find what is driving the behavior...is she bored? frustrated? angry? Is she "coming down with a bug"? Is she feeling insecure or stressed? These are comfort behaviors...why is she uncomfortable? When I am proactive in discerning her needs and meeting them, we have fewer instances of negative behavior!

So here are some of our tips!

We offer a variety of textures for her to mouth such as: bumpy/smooth hard/soft firm/chewy warm/cold, etc. These are foods and other objects as well.

Chewlery and Chewy Tubes, also aquarium tubing, an 8 inch piece goes a long way!

DENTAL FLOSS is wonderful…she will run it through her mouth for 10-15 minutes at a time…never the whole thing in her mouth…just pulls it through her teeth. We get the minty kind.

Popsicles!

Her vibrating elephant (heavier vibration than the star teether from Wal-Mart) is great when she’s being really oral. A few minutes is all it takes to give her lots of great input and slow down the mouthing.

Crunchy snacks (like crunchy Cheetos or cubes of peeled apple) are great when she’s grinding her teeth (which she does frequently.) Chewing them gives her the same heavy proprioceptive input to the jaw that grinding her teeth does. I think she also likes the sound of chewing crunchy things.

Chewing on a toothbrush is one of her favorite mouthing activities. We also use powdered "Tang" for more input. Just dip the damp brush into the powder...she loves it. I gently brush the insides of her cheeks and her tongue as well.

Nuk brushes, toothettes, tongue depressors, all are good tools to use in the mouth for stimulation. (I use them as taught by her SLP...I don't let her have these items!)

Lollipops and ice cream help tongue protrusion and lip closure.

Foods that we use for different reasons:

Strengthen suck and blow:
Orange wedges
Juice bars
Peanut butter
Popsicles
Lollypops
Lemonade
Tart juices
Food dips (like ketchup and ranch dressing –she sucks the dip off of carrot or celery sticks)

Increasing jaw control:
Toast
Cheetos
Dried fruit (raisins are a favorite and aid in pincer grasp also)
French Fries
Small pieces of chewy candy (well monitored!)
Apples
Cheerios

So...I hope this info benefits someone out there! It sure has helped us!

Project R.I.D.E.

Project R.I.D.E. is a wonderful program that provides therapeutic horseback riding for disabled individuals of all ages (3 and up.) Julia has been a part of this program since she began school last month and absolutely LOVES her time at Project R.I.D.E.

In addition to helping improve Julia's balance and coordination, therapeutic horseback riding provides her with an excellent source of vestibular and proprioceptive input. The gait of the horse mimics walking motions for Julia, which (in theory) will help with motor planning for walking. (The repetitive motions of her legs moving up/down/up/down as she rides.)

Regardless of how she is being benefited physically, emotionally Julia is having a ball! She loves her time at Project R.I.D.E. and is developing great relationships with her sidewalkers, instructor, the horse handlers and the animal. She signs "thank you" after each session and has learned how to pat the horse's neck to tell him to "walk on." She gets very excited about this and often the sidewalkers have to tell her to "Wait, Julia, Poncho can't walk on right now." Considering that a few months ago she couldn't be in the same area with a large animal without having a meltdown this is great!

Our older girls (Victoria, Susanna, and Alyssa) all volunteer at Project R.I.D.E. at least once a week, and often more frequently. They love the time that they spend working and know that they are helping to make a significant positive contribution.

How blessed we are to have these great resources available to us.

www.projectride.org/ProjectRIDEDesc.htm

OUCH!!!

It seems that every child has their share of bumps and bruises, but our Julia has over-extended her quota! Due to her poor balance and low muscle tone (she loses balance or her arms give way suddenly as she crawls...she can crawl very fast now!) she has had stitches in her chin 5 times. Most recently Saturday a week ago.

We have all hard wood and tile in the bottom floor of our home. Julia lost balance and banged her chin...hard. After 5 hours in the emergency room we went home with 11 stitches...3 inside and 7 outside.

Believe it or not...this is not the worst part of the story! I took her to her pediatrician on Thursday to have them removed and he felt they needed another day or so to heal. "We'll remove them Saturday." he said. He felt that the scar tissue was still weak and it wouldn't take much to split it open again.

Would you believe that by 6:30 that evening we were on our way to the emergency room again?! Her weak shoulder-girdle gave way and she banged her chin on the floor while crawling. I sobbed like a baby this time...it was so awful...all this blood and her poor chin looked (literally) like chopped liver.

This time they didn't even attempt to re-stitch her chin. The inside had healed to the place that it wouldn't knit together properly (from the first injury), and the only place that would heal together were the edges...which are too weak from all the scar tissue. Sigh. So now Julia has this large football shaped scar on her chin.

Yes...I know that in the grand scheme of things this is relatively minor...but right now it's big to us.

Puh-puh...GOOD GIRL!!!!

The coolest thing happened in school last week. We have been TRYING and TRYING to get Julia to exhale with the sound for the letter "P", but all she would do is purse her lips...no exhale at all. We have tried all kinds of tricks to get this new sound, to no avail...BUT...!

Last week the letter of the week was "P" and her class did some fun activities. Julia (with LOTS of help!!!) glued and colored all her projects...AND MADE THE SOUND "PUH"!!! Now, I know that some of you may be rolling your eyes at my being soooooo ecstatic over this, but you have to understand how limited verbal language is for individuals with Cri du Chat Syndrome, and HOW LONG we have worked on this sound with Julia. She really likes the other kids in her class and tries to imitate them.

NOW for the cool part...that night I took her home and asked her to tell daddy what she learned in school. She made the sign for "school" and then looked at me. I said again "Tell daddy about school." She looked right at him and said "Puh-puh-puh"! We did a few cartwheels and clapped and she clapped too...she was very pleased with herself!!

Julia has also started to say oo-ee-uh, which is her pronunciation of her name. Miss Lisa told me that Julia had said her name and I was surprised. She says it at home, but not for anyone but family!

A couple of small steps...but a very tangible ones! Hooray for Julia! (And HUGE, GIGANTIC thanks to Miss Lisa!)

SCHOOL DAYS!!!!

WELL! Julia began school last week and we are so pleased by how well she is doing. She really loves her teachers and classmates and signs for "school" in the morning when she gets up. It is funny that one week of attending and she is already in the routine of things.

Julia attends Jessie Baker Elementary which is an all-special needs school close to our home. There are 167 students enrolled between the ages of 3 and 22 years and all have special needs. The environment is such a warm and comfortable one...I am really glad that Julia was able to get into this program.

Miss Lisa is Julia's teacher and she is assisted by Miss Linda, Miss Karen and a great helper named Marcia. There are 3 other students in her class which makes the ratio of students to staff 1:1! Julia gets lots of personal attention in this wonderful atmosphere and is blossoming before my eyes! I'll admit that as a die-hard homeschooling family it was an extremely difficult decision to send her to school, but I definitely feel like it was the best choice for her.

At church last night a friend commented on how differently Julia was interacting with everyone, and on how her level of attention had increased. It is true. Julia is paying more attention to what goes on around her and is much more interactive with her environment. I think that the walking is making a big difference also...she is using her walker 75% of the time and I think she feels more independent and "in control". I have to admit that I have personally altered my way of looking at her. I don't see her as a baby anymore, and she is responding to our family treating her like a big girl.

So...all of my concerns were groundless...she is doing SUPERBLY well! Thank you, Jesus!