Communicating with Educators

Crew's teacher this year is fairly new and I'm not sure how she feels about having Crew in her class. Additionally, we have somewhat of a face to face communication barrier between us as she is deaf and my ASL skills are limited. I have been in knots about the negative feedback we have been getting daily which is relayed through the bus driver and aide. I just don't think this is acceptable even with the communication barrier between us.

How would you handle a situation like this? When I ignore the problem it just seems to fester so decided to try to tackle it head on. I hope I didn't just shoot myself in the foot but here is the reply to the teachers email regarding my request for a parent/teacher/director meeting.

Tell me what you think? Should I just go crawl in a hole now?

Hi J.....! I really do appreciate the update. You have been so great with Crew and when I have stopped in at the school I am always pleased with how everyone interacts with Crew. I hope he is making progress enough that people feel like his time there is worthwhile. I'm happy to hear that he is getting around the school with various means (walker, wheelchair, bike). That is so appreciated especially during these cold months when I can't get him outside on his bike. Crew loves all of those activities including swimming and dance.

In my heart I know he is a very bright child. I can see the wheels turning when he works on chores at home, interacts with his ipad, and even watching cartoons. Developmentally, I am seeing some progress and it is such a delight! We are working hard at home to improve his nutrition and to provide a variety of activities to stimulate his mind and give him exercise. I know it is a lot of work (my body reminds me daily) but I hope it will pay off over time. Thank you for taking part in helping him find success during such a critical time in his life.

It is so hard having a child that cannot communicate. I do not know what he does at school, who he plays with or anything without communication between you and I. My main concern is that it has been a really long time since I have heard anything positive and as you can imagine that is very frustrating and hurtful. We try so hard not to use labels with Crew yet almost everyday I get reports that he is "indecisive" or "uncooperative" (relayed through the bus driver/aide). One big concern I have is that if this dialog takes place between adults at the school, I'm sure his other classmates are picking up on it. Our main goal with Crew's education is that he is accepted and loved. We want him to have a positive experience when he is away from the home and to feel good about himself. Please don't report any negative behavior with the bus driver and bus aide unless you are concerned that he is sick or unless he has had a seizure. They love him and go far beyond their job descriptions to provide a positive atmosphere. I want to keep it positive but when they bring him home they usually relay the information given to them about Crew's behavior and then the other kids on the bus pick up on it.

The best way to communicate with me other than phone is by email or text (xxx-xxx-xxxx). I appreciate your cooperation in this matter.

Warm regards,

Melanie

Just a quick update

First of all, I want to say "thanks" to my readers (all 5 of you) for your concern, thoughts and prayers on behalf of Crew. Who would've known it would be such a rough year yet we are constantly blessed having Crew in our lives.

I'm going to try and address some of the current happenings with Crew.

Powerchair: The powerchair that was donated to us back in December... then totalled by the airline is now being fixed. The airline paid out for damages but we found out our cost to adapt the chair for Crew was going to be $1600.00. This is the cost of a joystick and a seat cushion. The child who had the chair before us didn't use a joystick. He drove it with a headpiece and the seat is too large for Crew. Consequently, we decided it might be in our best interest to purchase the demo chair instead. The demo chair fits Crew perfectly and since that particular chair is being discontinued we could get it for a good price. Now, we are going through the grueling process of getting insurance to purchase the chair.

Preschool: The move to the deaf school has been good for Crew. His sign language has picked up and he is making progress. The hours are long and that has been a legitimate concern. He is gone all day and when he comes home he is exhausted. It's all I can do to keep him happy until bedtime. On the other hand, the school change has been tough because we don't have as much time with him to work on PT.

Mobility: His hamstrings are very very tight and I'm having quite a time finding time to stretch him. We realized the other day that he isn't crawling anymore. He can still do it if you coax him but instead of roaming the house like he use to, he just sits there and cries until you pick him up. I really don't know if his wheelchair injury is keeping him from moving around or if its just the tight hamstrings. At our last botox appt., we had injections in his gastrocs but not his hamstrings. I think that might have been a mistake.

Social: The last few days have been a pick-me-up as I've seen his mood improve immensely. Crew has been so snuggly and showers us with hugs and kisses constantly. I'm so thankful for this! Outside of family, Crew's social life consists of adults... his PT, his teacher, my friends. It pains me knowing the other neighborhood children are participating in playdates and he is obviously excluded. Crew doesn't even respond when they say "hello" so naturally his circle of friends is basically non-existent. The twins (2-years old) are so sweet to him... I just wish we could develop some basic social skills.

Health: We haven't seen any seizures for two weeks now. Crew is rebuilding his strength since his injury and I hope to see more walking in the future. I am diligently trying to get the constipation under control. It's been really bad and we are using Miralax, Ducolax, Senekot, and enema's. I feel so bad. His eating habits are horrible. He lives off of oatmeal, potatoes, yogurt, pancakes, and eggs. He won't drink juice and fruits/veggies are out of the question with the exception of some occasional applesauce. Most of his food aversions have to do with sensory issues. He is so grossed out by the texture of foods. I'm very worried about his eating. It's frustrating and stressful. It takes an enormous amount of time to feed him and cannot be accomplished without games and distractions. Getting his food and meds down him before the bus comes has been quite the task!

Keep us in your prayers. Love you all!

The Deaf School.. following your GUT

My tour of the deaf school last Wednesday went well. Carl and I actually feel pretty good about it. At this point, we figure we may as well give it a try because if we don't we will never know...

Crew has attended the preschool with our district for two years now. He has made some good strides but nothing significant. We are still struggling to communicate with him. This past Christmas we received the entire "Signing Time" collection and believe it or not his ASL has taken off.

I was able to observe all three deaf preschool classrooms together for "large group" activity. It was fun to watch the kids interact with each other. Most of the kids have hearing aids or cochlear implants. Many of them have glasses and a few were in wheelchairs. It didn't matter. The kids seemed to all be friends. They interacted well. They communicated with each other. I saw happy happy, smiling, giggling children.

Sometimes when I think about the strides we've made in the last 6 weeks I get kind of choked up. It's my greatest desire to see Crew communicate. And while the thoughts of having him away from home for such a long day make my heart sink, I hold out HOPE that this change will be a good one. We only want what is best for Crew. With that in mind, I made the phone call today that will set this transition into motion.

There is that parental instinct when you decide to do something you never thought you would do. I call it parenting through your GUT. Not that I haven't spent a lot of time on my knees though.

Have you ever made a decision "in the best interest of your child" that you never thought you would make? How did it turn out?

White Christmas

I chipped away at the ice for over an hour today. The best part about it was having my little man keep me company through it all.

Shhhh.... don't tell our sales rep that we dragged his chair through the snow just for kicks. Crew did surprisingly well but it looks like we'll have to adjust the torque if he really wants to climb the snowbanks;

Crew is really enjoying the holiday lights, the cold, and the snow. The other night while driving around we stopped to look at lights and listen to our neighbors synchronized lights/music. I asked Crew if he "liked" the lights and he signed a definite "LIKE" and then clapped his hands. The sign is coming along:)

WISHING YOU A WHITE CHRISTMAS!

Communication

Today when I think of the word "communication" it reminds me of the word "frustration". Did you know the two are related? Apparently they are!

This week has been a hard one. Crew is really struggling to communicate his wants and needs. We've tried everything I can think of. It has been 4 years now and we are NOT making progress. I know its not true (and those of you in my same situation would probably like to hit me over the head with a hammer) but sometimes it feels like we are the ONLY ones in this boat. Today it hit me really hard and I cried like a big baby (which doesn't help anything by the way). Crying just makes you tired, and pity parties don't help either which is why they are far and few between in my world. Learn from my mistakes and just buck it up and SMILE.

I've decided I need to change the focus of my prayers. I've tried everything I can think of and I don't think I'm going to get anywhere in this endeavor without my Heavenly Fathers help.

Pediatric Rehab/ Speech

Tonight we met with Trent, our new speech therapist. Right away he started signing with Crew and connecting with him. We discussed my expectations and previous disappointments. I could tell right off that he has a lot of experience and a wide knowledge base. We are for sure going to start seeing him on a regular basis.

I am so relieved!

And... I am tired so that is all:)

Social Imitation

We had our annual family circus last sunday. Getting a good Christmas shot is always interesting. I think the big boys were trying too hard and Crew is never looking in the right direction. In an effort to break things up and kinda shake it off, I suggested everybody "cough in their sleeves". I don't know why.... I guess its funny to me since Crew recently started imitating behavior. He started the cough in your sleeve thing after seeing his therapist do it. He also likes to pretend to scratch his nose.

Tonight before our pre-bedtime "shooting hoops" ritual, I could tell Crew wanted to play ball so I signed "ball" but didn't say anything (usually I combine sign and speech) and immediately Crew turned his head toward the toybox and reached for the ball. Okay, its simple proof that he totally "gets it"!

And "NO" we still don't have a Christmas card picture.

Christmas in the Car

The title of the last post has been driving me crazy so I thought I'd quickly pop in. Thank you to all of you for the supportive thoughts and comments. It means a lot to me to know that we have our own little cheering section. The therapy is going a lot better. We had minimal tears today. I can already see that Crew is stronger and his tall kneel is looking better. I think his trunk support is improving too:) He really is doing well in the cages but doesn't really like his suit. He knows when the suit goes on he is going to have to work and work. I will have to take notes and share with you how his four hour daily therapy is broken down. Also, I have more pictures to post later when I'm not in such a rush.

I've had oodles of time to think about this Christmas season as I've been traveling back and forth. Also, I've enjoyed reading some of your Christmas memories, your traditions, expectations. Yesterday, in church we talked about what gift we might give our Savior this holiday season. Many suggestions were given and I know what it is I need to do to show him my love and appreciation. I have these internal struggles to let go of past hurts and to rise above. Oh, and it is so much easier said than done. It is my greatest desire to forgive and forget, be a little kinder... more loving, yet I continue to have these battles and there are days when I really do not like this situation I am in. However, I do know that life goes on and there really is a light at the end of the tunnel.

My oldest son keeps asking me what he can get me for Christmas and I say, "Good kids and a clean house"... (I stole that one from you Kristen). S is so tired of my answer and now he asks me what he can buy me for Christmas. Again, I tell him that he cannot buy me anything... that I just want him to treat his brothers kindly and be the best he can be.

Truly, there is nothing greater than peace and love and happiness in the home. Money cannot buy those most treasured gifts and I so I want to give of myself and overcome these obstacles.

In an odd sort of way, I'm thankful for the many hours I've spent in the car with Christmas carols playing. Crew and I have had some quality time together singing and munching on cheetos. I've also been thrilled to hear some new words escape his lips and watch as Crew develops his own method of communication with me. Oh, and I've learned that when I see his arms waving in my rearview mirror it means he wants another cheeto:) Love that boy!

Straight to the H-E-A-R-T

A blog post by Billie about her little chatterbox, Eden, has been playing through my mind today. Eden recieved her cochlear implant almost two years ago. Eden is an adorable little girl who has overcome many obstacles including the ability to communicate with her family. Today, Billie posted a sweet video of Eden speaking in her cute little voice saying, "I love you".

"I love you" is an expression we all need to hear. As the mother of a non-verbal child I'm not quite sure when or if I came to accept the fact that I may never hear those words. Because Crew does have some hearing, he is not a candidate for a cochlear implant. Crew shows his love in a million different ways.... with a smile, his hugs and quick forgiveness. Have I ever doubted his love for me? Of course not!

However, the hope and possibility that I may hear those precious words escape his mouth one day has been on my mind today. As I put Crew to bed tonight I looked at him and said, "I love you". We gazed at each other, I repeated the words, "I love you" six or seven times and just as I was about to turn away he distinctly crossed both hands over his heart and I knew without a doubt what he was saying, "I love you too"!

We have worked and worked on teaching him sign but I can honestly say that this "I love you" sign he learned from watching his Signing Time video. My heart is smiling now!

School, Scouts and SignLanguage

Well H had his first day of school on Monday! H loves his new teacher and said she is the nicest teacher ever.... even more nice than his 1st and 2nd grade teachers and thats really saying something:) Unfortunately, he feels like he's in a class with all the mean boys in school. I asked him if he wanted me to move him to another class and he said, "No, because he loves his teacher!". Well hopefully he'll make some new friends and he plans to catch up with his old pals at recess.

It looks like my three kids will each have their own separate "FIRST DAY OF SCHOOL". S has missed the first two days because he is sick. He is so bummed. Nobody wants to miss the first day of class! He still has a cough but his fever is gone so I don't think he is contagious. We will try it tomorrow. Wednesday is our short day anyway!

Tomorrow night is back to school night for my little preschooler. I'm crossing my fingers and hoping that this year will be a good experience for him.... AND FOR ME!

Tonight we had our first pack meeting in over 3 months. H earned his Bobcat and S earned his Webelos badge and his swimming and citizenship belt loops. I'm frustrated because some of the leaders don't consider Scouting a priority and don't plan to put their own boys through the program. WHAT???

At Pack Meeting the boys were shooting model helicopters up into the sky and Crew and I were watching and he looked up in the sky and signed "AIRPLANE". The Signing Time videos are paying off:)

Twenty People on a Boat

We took our annual trip to Lake Powell this past week. I love Lake Powell in July because the water temps are so comfortable.

It's been awhile since we've packed so many people on the boat. My dad bought into a houseboat share probably 15 years ago and we've been going ever since. The boat is small and it's old but the memories are priceless. Sharing the memories and fun with my children is the one thing thats helped retain the tradition. In terms of family vacations I'm ready to move on. Hauling the kids the food and the bedding down to LP is a lot of work. Call me overprotective but I worry so much that something could go wrong. Someone might break a leg, get attacked by a cougar or bitten by a rattlesnake. The winds are fierce at times and storms roll in unannounced. Medical attention is hours away and then there is always the risk of someone drowning. I think about these things all year long and so when the time comes to make the trek I feel a bit apprehensive.

Fortunately, we were blessed and the whole group returned home unharmed. I'm quite certain that all family members have built a reservoir of memories and stories to share. And while the sunburns will soon be forgotten the memories will not.

I'm learning that a nonverbal child is blessed with the ability to share his passions and spread joy. The pic of Crew with his mouth wide open speaks volumes. The feel of the wind in your face, the spray of the water, the bumps.... he loves it all! I could have sat there for hours and watched his facial expressions and listened to his giggle.

My brother, K, is the keeper of the powerboat. The boat use to be my Uncle Sids and is over 40 years old. We've named the boat "Sid". Sometimes the boat is a bit quirky and requires some pampering which my dear brother graciously applies. K spent the first day tinkering with the carburetor so the family could enjoy boat rides, kneeboarding, tubing and skiing. When I hear the word "patience" I think of K. Sid performed quite well considering his age and we all enjoyed those water sports that we all crave.

My SIL K is the queen of kneeboarding and everyones favorite aunt. K is accepting of each family member and always gives you the benefit of the doubt.





















Little Red is the daughter of K&K. Red is the same age as Crew and a great cousin to my boys. I loved this picture of her in her Hello Kitty hat.

















It was so nice having Grandpa and Grandma there. It's a great chance for the kids to get to know them better and vice versa. I was so thankful for the extra help with Crew. Carl and I were able to spend some time together without the kids for a few minutes here and there which was greatly appreciated.














On the last day there we found an awesome sandy beach. The red sand was so soft and when I put Crew down he went crazy. He was crawling around at high speed because the sand was so extremely soft. I took off my flip flops and walked around. The littles built sand castles and one of the littles had a facial;)













My sister Dar and her beautiful smile! Dar is a busy college student working two jobs and so having the opportunity to spend some time with her was good for me and the cousins.

Dalligator in his Crab. I'm still working on getting this one to warm up to me. It might take some time because he's a momma's boy but I'm not giving up because he's a cutie.











The kids were great about keeping their life jackets on. We make them wear them all day and at night we put the toddlers in their pack 'n play cribs.

This little guy has an infectious giggle and some great comebacks. He is famous for random comments. I love random comments.












Carl and I really enjoyed the water this year and time away from our usual daily stresses. Carl was also a great help with the kids and the meals. I really don't think I could do it all without his help.











S and H spent endless hours playing with their cousins. I think they made up some form of "Survivor" game or something. They created these adorable crowns out of twigs and leafs.

S really enjoyed swimming, jumping off of rocks, and kneeboarding. At night, S loves participating with the adults in card games and a family favorite, SNARF.

S was the master fisherman again. He caught the biggest fish! Sorry, no pics! H spent hours hiking the red rock with his little cuz and exploring.

Carl and I have endless discussions about someday getting a boat. We feel like it is an activity that our family can enjoy where Crew will get equal satisfaction. He is so happy on the boat and all he needs is a comfortable chair. The Utah Boater laws require a rider to be age 12 or older. So if C is driving the boat and I am skiing, we need someone 12 or older to hold the flag and watch the skier. That gives us 2 years to save. Oh, wouldn't it be fun!

We are home... we are safe and today I took a nap.

Non-Verbal Communication

SLEEP
The 5 handshape is facing the face and is then pulled down and closes to represent the eyes closing. The head pulls down to further emphasize that a person is sleeping.







Learning to sign is a long long road. We've been working on some basic signs for over two years. Initially, Crew's therapist suggested some signs like, "MORE, MILK, EAT, PLEASE" etc. She also showed me the sign for sleep but indicated that most children don't learn it quickly because they don't want to. What child wants to indicate they are tired or
ready for sleep?


SLEEP is the first sign that Crew learned. He started using it ages ago, I can't even remember how long. The communication with Crew progresses at times, plateaus and sometimes even seems to regress. Crew has gone for long periods of time where he won't use his signs or words. This is usually during a time when he is diligently working on something else like gross motor skills. I've read that it is typical behavior for these little kiddos to plateau in one area while they are concentrating on another.

It is very entertaining to watch Crew communicate that he is ready for bed. Last night, I noticed Crew subtly signing "sleep". I said to my DH, "Carl, look at Crew". To which my supposed hard of hearing son starts giggling and in a double handed exaggerated sign language fashion signs sleep repeatedly. It is so fun to watch Crew get into his sign. One is not really suppose to drag their hand down the face smashing the nose and squishing the lips but is to hold the hand in front of the face. But I say, "Hey, whatever it takes to get the point across kiddo!

TANGO TALK

I had the privelege of going to Crew's preschool today. I was impressed with the interaction he received from the teachers. There are only 6 kiddos with 5 teachers. Crew gets a lot of one on one attention. It's great!

We met with the Augmentative team. They observed Crew and talked to me about the different communication devices. There are several options. Identifying and pointing to pictures of objects/activities is an emerging skill. I feel like Crew would do well with a simple 4 square communication board. We will probably start there.

I was introduced to some amazing equipment. It is exciting to know that there are so many possiblities out there for Crew as he continues to progress. One of the latest state of the art communication devices is the TANGO. The tango is lightweight. The voice is a childs voice. Using the device, a child can say things like, "I love you", or "Your bugging me , dad". I love it! It has a digital camera attached so you can take pictures of family, friends, toys etc and program it to voice the corresponding word or phrase. It even has the option of changing the voice to a mad, whiney, or happy voice. Who wouldn't want this for their kid!

Check it out here!

Waiting for the "breakthrough"

If I've learned anything from the journey of raising Crew it would be to celebrate each and every achievement. The "BIG" milestones are few and far between... sitting up, crawling, walking etc. As a family we cheer for the little things. Over time I've noticed that S & H's awareness of the situation has changed. Their prayers are different. Instead of "Bless Crewser that he can walk", its "Please help Crew to get really fast in his walker".

In their presence its my job to be positive always complimenting the little things and making a big deal out of stuff. "Crew is feeding himself! Look how he can scoop! Check it out... he understands cause & effect (while playing with his ball popper)!"

The praise goes on and on. I am proud! We love him! He brings us joy!

And also,

My heart aches. He doesn't talk. The list could go on and on but I try not to focus on what he can't do. Yet, the pain is there and I desperately want to hear what is going on in his little head.
And so we wait, we pray and we hope for yet another miracle because the truth of the matter is, this battle can be won!

Use Your Words

Crew has been really lazy lately with his communication. I think that he has been working so hard on crawling that we've slipped up a little on the verbal/sign. However, recently when he starts whining, I will stop and say, "Crew use your words". A lot of the time he will stop whining and start jabbering. The jabber isn't clear-- at all, but I usually know what he wants so I give in because he made an effort to communicate properly.

Tonight we went to Redbox to get a movie. Since we were at McDonalds I decided to get 4 Hot Fudge Sundaes to go. DH and kids got in the van while I waited for the sundaes. When I came out to the van and got in Crew started screeching and whining. I thought he was just doing his usual "I don't like my carseat" protest. Holding a tray full of Hot Fudge Sundaes, I turn to him and said, "Crew, use your words!". He immediately stops whining and quickly signs "Please".

Now, how cute is that! I handed S a spoon and asked him to give that boy some icecream. After all, he deserves it, doesn't he?

It's Signing Time with Alex & Leah.....

Oh yeah! We were lucky enought to go see Signing Time live at the zoo. Okay, we are huge Signing Time fans. If you haven't seen it, I'm sorry. I didn't know about the famous DVD's until this past spring. Since I was introduced, we have fallen in love with Rachel, Alex, Leah & Hopkins. Rachel Coleman's daughter Leah is deaf. Alex is the cousin. Their family started learning sign when they found out Leah couldn't hear. Two years later, Rachel's daughter Lucy was born. Lucy has CP. Rachel teaches simple signs through music and it is awesome. My kids are all hooked especially Crew. Crew has a bilateral mild/moderate hearing loss. We are trying to teach him sign. He has learned to sign a few words. He loves watching the DVD's and I know his receptive language is higher than his expressive. So, we keep plugging away with the sign language in hopes that he will keep learning more signs. I think it is so neat that Rachel is helping so many people with her music and sign. She is a hero! The picture shows Rachel with Alex (orange shirt) and Leah (purple), my 3 boys, and cousin E(stanger anxiety) :) If you want to know more go to www.signingtime.com