WALKS ALONE.....November 21, 2006

On Julia's website there is a milestones page. I created the page in November of 2003...right before Julia's 1st birthday. The last milestone listed is "Walks alone". Over the last 3 years we have watched Julia achieve one milestone after another. We rejoiced when she smiled, rolled over for the first time, pulled to stand, crawled and said her first word.

Yesterday I cried all day. Julia walked more than she crawled or scooted. She walked with no assistance whatsoever...no hand to hold, no walker, no support of any kind. She walked all over the house and over and around obstacles. She even navigated through a crowd of people after church service last night. It is only fair to point out that most of the people stopped dead in their tracks to watch her...it was amazing, and more than one tear was shed. So many people at The Rock Church love Julia and our family, and have supported and encouraged us unconditionally.

I was so overwhelmed to be given this gift the week of Thanksgiving. I feel that as of 11/21/06 Julia is officially WALKING! She has taken many independent steps before now, but never has she chosen to walk (without our encouragement)when she could crawl!!! Yay, Julia!!! Yay, Auntie Michelle!! (Julia's former PT who is still very invested in Julia's progress and has become a part of our family) Also, many thanks to Cheri who has taken over Julia's PT work in the last 2 months.

And most of all, thank you, Jesus! It's no mistake that the song we chose for the milestones page says "Count your blessings, name them one by one...count your blessings, see what God has done!!"

Too sweet for words...

Always sisters...always friends!

It has been such a long time since I posted on any of our blogs...life is insane for us during the summer! Hopefully, now that Ladies Retreat, Kidz Musical, C.O.D.E. conference and Senior Camp are over, I can get back on track! I wouldn't trade one activity! I am thankful for all that God allows us to do, and for my precious husband who, although he is not a believer himself, encourages us to be involved in many different activities.

Julia is making awesome progress in so many areas! To get the full picture, check out the June update on her website: Celebrating Julia!

Julia is now combining up to 3 VERBAL words in a sentence! Granted, they are word approximations, such as "mo" for "more", but we understand her, and she has finally "gotten" it...she can TALK to us! It is the neatest thing to hear her little voice say "Mo, mama, pease!" We do rejoice over this achievement ("We're so sorry, Mrs. Ezell...but Julia will most likely be non-verbal..."), and are also thankful that her signing vocabulary is now over 60 words, used consistently and appropriately! Thank you, Jesus!

Julia is becoming quite proficient in her walker...but the sweetest thing is when Olivia helps her steer! How blessed we are to have been given such a sacred trust...all seven of them!

The most wonderful friends on earth...

Adam, Trevor, Kirsten, Tim, Emily, Noah and McKenzie King

This is a picture of our wonderful friends the Kings! Tim, Kirsten and their children, Adam, Emily, Trevor, McKenzie and Noah are the dearest people in the world!

Tim and Kirsten have recently written a parenting book entitled "Helping Your Child Become". This is a timely and wise book that comes highly recommended to Christian parents everywhere. They also do Family Ministry conferences, retreats, revivals and seminars. Their children eximplify all the principles they teach, and I can say first hand that they are absolutely genuine people...no facades here!

The reason I post this on Julia's blog, is because they have been so integral in Julia's development from the first day, and love her as one of their own. (As they do all our children!)

We love the KING family!

Offering Support...

Aunt Kirsten and Julia when Julia was17 months old

Last week I was asked to speak to a local MOPS (Mothers Of Pre-Schoolers) group about offering support to families who have a special needs child. The leader of the group had gotten our name from the Easter Seals corporate office. Julia is a former ambassador for ES, and is still asked to do occasional events for them.

I was nervous, but comforted by the presence of my dearest friend, Kirsten, who attended with me to hold my cold and clammy hand...even if it was only in spirit! (A word here about our friends the King family. Kirsten is my best friend, and has been for almost 20 years. We have birthed our babies together, sewed together, worked through parenting issues together, laughed and cried together and supported each other through thick and thin. They are Uncle Tim and Aunt Kirsten to my kids, and we are Uncle Dave and Aunt Beth to theirs. Tim is a source of support that we would feel so lost without...they both are extremely aware of our older children and are always "filling their cups" with positive words and loving actions. The King children (Adam, Emily, Trevor, McKenzie and Noah) are like our own...and are our kids best friends. Without the Kings we wouldn't be the people we are!)

The response from the women at the meeting was overwhelming...many do know families with special needs kids, and want to reach out to them, but just aren't sure how. This got me to thinking, and I want to post some tips on offering support to families who have a member with special needs.

I can only speak from my own experiences, so these suggestions may not apply universally!

In our case, the kind of support we needed evolved over time. In the beginning, Kirsten held my hand through everything...doctor's appointments, the geneticist appointments, Alta (social worker), therapy, and educated herself in order to "spoon feed" me info about Cri du Chat Syndrome. I was so overwhelmed by the negative information we had received when Julia was born that she was four months old before I got online to research Cri du Chat Syndrome myself. Kirsten spent a lot of time learning about CDC and giving it to me in bite-sized chunks.

How can you support the families that you know?


Be open and available...approachable. Allow the family to express emotions without having to validate them...just listen!

If you are someone who is knowledgeable about special needs, don't assume that your insights will be welcomed at first. The family needs time to acclimate to the idea that their child is not typically developing. They do not want to be told that this is the best thing that ever happened to them, or that they will love all the new things they will learn. They will eventually come to this knowledge. Right now they need time to grieve the loss of the child they expected to have, and time to embrace their baby and his condition.

Realize that the parents are going to be very focused on the new dynamics of their family. They probably will forget things like birthdays, golf dates, and coffee dates. They are very absorbed in assimilating all the new information they have recieved, and deciding how to react to it. Don't be offended if the conversation is redirected to their situation often. It is what they are thinking about, and most likely, what they are talking about too.

Don't be afraid to ask about the child, how the family is doing, the doctors reports, etc...most families, especially moms WANT to talk about this new journey they are on.

Educate yourself about the disabled child's condition...but don't repeat to the family any negative information you may glean...they have already heard it from their professionals. Try to pull out the positive things. Kirsten was so good about this. She was always trying to find a positive way to look at Julia's diagnoses. Even when all the information we had was negative, she would put a positive spin on her words..."Children with CDC can have IQ's in the 30's, they can learn to walk and communicate, they can live an average life-span, etc.)

Encourage the parents to focus on what their child CAN do IN SPITE OF their disability...not on what they CAN'T do BECAUSE of it. 'Nuff said!

Learning about the child's condition also prevents the parent from having to explain things to you...they are explaining things to EVERYONE...be the exception!

Focus on the positive...no matter how negative the attitude of the parent. Don't be a "Sally-sunshine"...be sincere, but notice the beautiful blue of the baby's eyes, or the soft hair on the back of her neck. All children are beautiful! As Julia's pediatrician told me the day she was born: "God does not make everyone alike, and God makes no mistakes!" This is exactly what I needed to hear. Another comment that was made by one of Julia's professionals that completely changed the way I looked at Julia was made by her geneticist, Dr. Eswara. He told us that "Uncertainty is not a reason for fear. Uncertainty is a reason to hope." Ponder that for a while! It is amazing!

Many special needs children require huge amounts of hands-on time. Help with this. There are many ways to contribute. Ie: taking the child to therapy, working on therapy follow-up with the child in the home, doing household chores, laundry, or providing simple meals. One family brought us KFC the during the week after Julia was born. Another had pizza delivered to our house. It was wonderful not to have to think about what we were going to eat!) Most parents of special needs kids have in inordinate amount of guilt. They feel guilty about the amount of time their special child requires, and how much it takes away from their typically developing kids. Every moment they aren't serving their special needs kid, they feel guilty about not "redeeming the time." (Often we are given a "optimal development" time-frame...get as much progress in the first 3-5 years as you can, etc.)

"Fill gaps" with the siblings of the disabled child. Take them along to the library when you take your kids, to McDonald's for a Happy Meal and a romp in the play area, take a small treat to the typically developing child (game, book, puzzle, coloring book) and take time to enjoy it with that child. Kirsten helps us by taking Julia to therapy if there is an event for one of the older children that conflicts with Julia's schedule. She and her family also babysit so we can do things with our older children that Julia may not enjoy.

Provide older siblings with a "safe" place to express how they feel. My older children all love Julia, and most of them have stated that they want to have or adopt a special needs child when they grow up and have their own families. Three of my older kids want to become therapists, and postively impact the lives of people with special needs. But I can tell you that they didn't start out this way! They ran the gamut of emotions from anger to fear, and I am glad that Tim and Kirsten always have provided them with a safe, confidential sounding board for their emotions.

Help the family maintain normalcy as much as you can. Most families long for their disabled child to have "normal" experiences. Facilitate these...birthday parties, outings, family gatherings. Work to include the special needs child.

A very special Christmas tradition we have is going to look at Christmas lights with Tim, Kirsten and their children. Julia was born on December 10, and I can tell you that the last thing I wanted to do was look at lights that year. Kirsten knew, though that our family needed to maintain some semblence of normalcy. She called me and invited us to keep our traditional outing. I did not want to go and said so. Kirsten was sweet, but insistent. She pointed out to me that my older kids needed to look at lights. That Dave needed to look at lights. That, even though I didn't know it, I needed to look at lights. And that she would be there to pick us up at 6! It was not an easy thing to do...walk and smile and laugh like everything is "normal" but you know...it was just what we needed, and it is one of our few truly happy memories of the first few weeks of Julia's life.

Be sensitive to the child's/family's needs when they visit you. Julia has sensory issues, and needs frequent time-outs from too much noise or visual stimulation. I am thankful for friends who offer us a quiet place to go (a bedroom, or den) and regroup during a gathering. This enables us to take a break and come back and enjoy the festivities. If we aren't able to do this, then Julia's behaviors escalate into a full-blown meltdown and we have to go home.

Rejoice with the family! The Bible tells us to rejoice with them that do rejoice and weep with them that weep -Romans 12:15. The Kings (Tim and Kirsten and their children) have jumped up and down with us and done cartwheels over the smallest of accomplishments...like the first time Julia was able to isolate a finger. She did this by sticking it up her nose. We were still thrilled...after all, we had been working on this OT goal for months! Or the fact that one of Julia's first words was "Puh-puh" (Poo poo.) It didn't matter that she was talking about stinky body functions...we were excited that our non-verbal child was communicating verbally! As usual the Kings handclapped with us and praised, praised, praised Julia's efforts. And, just as Romans 12:15 admonishes, they have shed plenty of tears with us also.

BE THERE...even when you're not. What I mean by this is: be someone that the family feels they can call at any time for any reason. There were many, many times I did not call Tim and Kirsten. There were many, many times that I did not go by their house. But I drew great strength and comfort from the knowledge that I could if I wanted to. Believe me...there were plenty of times that I did!


Supporting families you don't know:

Everyone is different...it's a gamble! Be prepared to be rebuffed...but understand that the good you may do in offering support far supercedes the potential for any embarassment you may experience if the family is not "open" to you.

Don't be afraid to acknowledge a disabled child. The parents are already painfully aware of their child's challenges. They already feel like their child is being noticed. Acknowledge the child in a positive way. COMPLIMENT the child. If appropriate talk TO the child, not just ABOUT the child.

Be patient with responses. Some folks may be very open about their child, others may not be.

Teach your children that God creates everyone different and we are not all the same. Questions are ok...but ask them privately. Tell them to say kind things to or about the child. (Abraham Lincoln once said "If you look for the good in mankind you will surely find it." There's always something nice that can be said!) Kids are naturally curious...it's OK!!! Some of Julia's most ardent supporters are children we know at church. It is rare for a service to go by that Julia is not bombarded by children who want to talk to her, hug her, or help her use her walker. There is no way to measure the ways this has benefitted Julia! She loves those kids!

Encourage your children to reach out to kids that are different than they are, and to value them.

Support programs and fundraisers that benefit the disabled:
Easter Seals
Project R.I.D.E.
Special Olympics...and there are many more!

Learn a few baby signs...lots of disabled kids use sign language, and are thrilled when someone "speaks" their language!

Kindness NEVER comes amiss! Every parent wants to have nice things said to and about their child!

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!