Luke's Book

Luke has this awesome interest in making and writing in books (or white computer paper he staples together).  He loves to sit in his bed at night and write and write and write (which just thrills this teacher mommy's heart!)
Yesterday, while he was playing or resting (he's been sick) I found his latest book he has been writing in.

He titled it "My Days".  It reads:  "Dad takes me to do fun stuf.  and cool stuf. like golf or shooting, or football.  And we play together, and go bike riding together and going fishing.  Today Mom and Dad are taking me to a rashtront (restaurant) and I found a dead phone last night (my old cell phone).  I am keeping it.  We are going to a rashtront.  Tomorrow I am going to school and home.  I mite go on a bike ride, and sleep in to (I would LOVE that Luke!).  On Tuesday I am going to play the Wii or twister or truble or nerf or play with the baby.  On Wednesday I am going to krody (karate) with Theron (boy in his class) and sleep in (there it is again!).  And play nerf on the Wii or play outside with Grace.  We fite (fight) together.  Not the fiting (fighting) with swerds (swords).  On Thursday I am going to therapy at the hosebitl (hospital) with Joy (his therapist).  We have fun together and play games together like skitball (?) On Friday I am going to school or staying home.  I think I am going to school on Friday.  On Saturday I think we are going to bul (bowl).  On Sunday we are going to cherch (church).  Mimi will come over to are hose (house) or not.  On Monday I go to school every day exept (except) for Sunday and Saterday.  On Tuesday I go to school it is fun. **** BUT there is a buly (bully) in my class.  His name is Hunter.  He pretens (pretends) to punch me.  He lafes (laughs) at me win I take a penny off my name bord (board).  He is not nice to me and he calls me stuped (stupid) every day. This is my sher (share) day today. But I have a cold and can't go to school.  My dad is nice but Hunter cales (calls) me stinky pants. But I ignor (ignore) him.*****  On Wednesday it is a hafe (half) day and we are lerning (learning) dividion (division).  On Thursday I get out of school ely (early).   I have therapy. We play together.  I thror (throw) ben bags (bean bags) in a target.  It is fun.  We do table work.  On Friday my dad takes the day off on fridays.  He us (used) to take tusdays and mondays off.  He got bumbed (bumped) to the 221 job.  But he us (used) to work on the 227.  He is going to get col (coal) for me.  On Saturday my dad hase (has) to work. It's (yes he used a contraction!  Go Luke!) sad. On Sunday Mimi come's(now he wants to use them alot) over on Sunday.

I honestly can't believe that he wrote all of that with NO help from Mark or myself.  I must admit I teared up reading about him describe being bullied everyday at school.  How is that ok? or acceptable?  Why must the bigger prey on the little and the different?  My heart breaks that he gets on the bus each morning knowing what awaits him the classroom.  I talk with all the teachers all the time and there never seems to be an resolution to the issue.  I have seen this boy in action and I have no doubts that he knows how to push Luke's buttons.  I just bothers me that with all of Luke's OTHER issues (glaucoma, tourette's, ADHD, sensory processing, auditory processing, microcephaly, etc.) that he HAS to deal with this kid.  Makes me MAD.  He tells me he gets picked on when he leaves the classroom early to go to various therapies and OT with us on Thursdays.  Please pray for wisdom for Mark and I as we discuss the educational future of one VERY exceptional child!

Unknowns

If there is one thing that irritates me in this world...it is not knowing. I HATE the unknowns. Unfortunately everything is an unknown right now. We finally have the two appointments scheduled for Luke's eye genetics. I did find out that they are going to have to sedate him to take pictures of his eyes. I don't like that idea, but I understand. Then a few weeks later we have an appointment to meet with that doctor.

Then there is the whole issues of school choice. I wish someone would just make the decision for me. I think this is always the most difficult decision for me. There are so many ways to look at this and so many layers to this puzzle. Here is a little background. Currently Luke is in public school. He is being served on his IEP. No matter what choice we would make for Luke(public, private, home school) he is entitled to receive his specialized instruction on his IEP. It is his right. Public school is experiencing major budget cuts. Larger class sizes, fewer teachers, less programing, resources and tools will be the reality. This is concerning to me as a parent of any child, but with Luke especially. He requires a lot of attention and in a class of 30 that is not a lot of teacher time to go around. Luke is picked on and made fun of by classmates because he is "different". Kids today know MUCH more than we did. He fights us tooth and nail to go to school everyday because he says he HATES school.

We have tried private school. It was awesome in kindergarten and just what Luke needed. The small class sizes are great, but the work load is very difficult for him. He is not the typical "cookie cutter" kid. I have heard that he requires too much attention of the teacher and takes away from other students in the private setting (which breaks my heart and infuriates me all at the same time). I feel like screaming at the top of lungs "don't you all get it? Don't you see? He NEEDS people to SUPPORT him now more than ever." BUT...I know the rules of private schools...they do not have to, nor do many of them except any students with special needs into their programs because they do not have the ability to serve them. I would like to CHANGE that. I see the vast need for CHRISTIAN EDUCATION and children with special needs. I have researched until I have been exhausted and there just are NO options for kids like Luke. How sad is that? Parents who desire to bring up their children and educate them in the ways of the Lord through Christian Education are left with very few options for doing so. And then there is the cost....who has 4800 dollars per kid laying around these days? Take that times 2 kids and then add 350 dollars a month in gas to transport them each way and the total monthly payment for private Christian Education is around 1300 dollars per month. And this is where I can start with the I HATE money conversation. STINKS.

Homeschooling is what my children keep asking me to do. I give it a lot of deep thought. Mark and I pray about this. It is a VALID option. I am a licensed Washington State Teacher with a K-8 and preschool through 12th grade special education endorsement. I am QUALIFIED. This option would need to be thoroughly planned out and orchestrated. I would NOT use the Home Choice Academy program as it is not appropriate for Luke. I would need a break from the kids each week and they would need to be around and socialize with other kids too. I would need to find some type of home school co-0p that would support homeschooling of kids like Luke. The adult support would be great too. I don't know if this is the answer, but it is an option.

I did try and get a 2nd grade teaching job at the Christian school so I could get the educator teacher discount so we could afford to send the kids to school, but it didn't work out. I am TRUSTING God that He sees the WHOLE picture and HE knows what is best for our family.

I would LOVE to hear thoughts or insight into these unknown school choices. You could post in the comment section or email me at misscarissa@hotmail.com

Bennihana Delight!

For my birthday, my Mom and Roger took the whole family to Bennihana for a special dinner. We had the absolute best time! We had the whole table to ourselves which was wonderful. Luke was beside himself watching his very own "Iron Chef" cook his dinner right in front of him. He was yelling and clapping and laughing...it was hysterical. Grace thought it was awesome too, but in a much more reserved fashion, although I should mention that she is still talking about it so it left a great impression. Miss B LOVED it! She was clapping and bouncing and shoveling fistfuls of fried rice into her mouth and signing "more". It was the cutest thing I have ever seen. It was a long, perfect dinner and I was so thrilled to share it with my family! Thanks mom for the memories. I loved every minute of it!

This kids menu doubled as a chef hat!

Bella having her appetizer bottle before the main course.

Grace donning her chef hat but only for the picture.

Luke attempting to use chopsticks. Go buddy!

What is Luke's therapy like???

Luke doing a puzzle while having our first and last iLs session in West Linn (before we found out the insurance won't cover it). By the way, Luke has never sat and done a puzzle like this before, EVER. He finished it too, with minimal help from me. I was impressed.

Luke working with Janell on speech sounds and phonemic awareness during our first and last therapy session.

When we finish raising the funds for the iLs (Integrated Listening Systems), Luke will begin therapy sessions in our home. I am going to be trained in June by iLs to use this machine with Luke (and others if I want). The iLs programs will "re-train" parts of the brain involved with learning, communicating and moving. By combining an auditory (listening) program with specific visual and balance activities, iLs strengthens neurological pathways and improves the ability to learn and process information. This program uses both air conduction and bone conduction to deliver information. The music in the iLs is "gated" music. This means that the program filters the music to remove high, low and middle frequencies a different points during a session. Alternating between these frequencies exercises the ear (muscles of the middle ear). The benefits to this program are increased concentration, cognitive skills, reading and writing, visual, auditory and motor coordination, processing speed, energy, self-confidence and mood and behavior. During our sessions Luke will also be working on reading and phonemic awareness strategies to improve reading fluency and recall.

An update on our funds is that we have raised $800 so far towards the iLs system! In less than a week we have raised that much. Only $1000 more to go. I am AMAZED at God's goodness and faithfulness to us! Keep praying for Luke and the additional funds that we need. My sister Katie is still donating her proceeds from her online store to Luke... visit SLATED . Thank you again Katie and to everyone that has donated so far. You ARE making a DIFFERENCE in my son's life!

Devastated

Last night I received a call from Janell at Dynamic Learning Services (where Luke is doing his listen therapy). She said that our insurance decided they are NOT going to cover the therapy that Luke so desperately needs. I was shocked as I listened to her sweet voice tell me this. I had done ALL my homework and called the insurance company before we even proceeded with the first evaluation. They had also called and made sure our insurance would cover the therapy. We were both told they WOULD. Janell kindly told me that we had two options: pay for the therapy ourselves, or buy our own ILS (integrated listening system) and do the therapy with Luke ourselves. To take Luke for the 30 sessions to West Linn would cost us 3800 dollars for the 4 months plus gas on the hour commute 2 X per week. To purchase our own ILS and perform the therapy at home will cost 1800 dollars. Yes, the 1800 dollar machine won't be "as" good as Janell's, but they are both made from the same company with the same scientific research.

After she told me the devastating news, I cried for a half an hour. I WORKED so hard arranging all the commuting, fighting for the two different time slots, arranging with the teachers and staff at school, laminating all the speech sounds cards, etc. But mainly I cried for LUKE. WHY must everything be so difficult? I felt like a failure as a mother. "If I was a good mother, I would have the 825 dollars a month to take him." But the truth is I DON'T. So...after a good pity party (thank you Maryjane for reminding me it is ok), a talk from my MOM and MARK, and being reminded by my sweet SISTER that I am Luke's biggest ADVOCATE and a FIGHTER for him....following her lead....I AM GOING TO FIGHT! The health professionals have shown me his deficits, proven to me the auditory difficulties he has and have made the case for WHY this THERAPY is so important. The only thing they haven't done is made the therapy possible for mommy's like me. I don't why GOD would change the path...but here we go. We decided we need to raise the 1800 dollars to buy the machine for home use. Not only will Luke first benefit but Grace can go through it next, and Mark can use it for the Dyslexia he struggles with, and it will only be another tool for my career work in sped.

The TRUTH is...we can't do this alone. This is a time I am asking for HELP. I hate asking for help, but I need it. My sweet sister Katie decided to donate all the proceeds of her online store to Luke this month. I am blown away by her generosity and creativity. You can visit her site and purchase something and all the proceeds will go directly to Luke to help bring him this therapy. Her site is www.etsy.com/shop/slated If you would like to make a donation to Luke there is button posted at the top right hand side. If you can offer your prayers to partner with us that God will provide for Luke we would extremely appreciate that too. Thank you!

A Loss of Vision

I have been on a bit of a blogger break. That happens from time to time when I have to process news that is difficult for me. The news this last week wasn't what I expected and I have felt devistation.

Luke had another appointment at Casey Eye in the Glaucoma department. He has been taking visual field tests over the last year. There is a learning curve to these tests. This last one he took, last Tuesday, was the first one they actually counted. It showed that he has about half of the vision he should have peripherally. The specialist is now referring us on to a specialist in retina genetics. Even if they happen to find out what is causing this loss of vision they don't believe that there is anything they can do about it.

So...I cried, and I cried, because as his mom...I AM scared. I haven't done this before. Mark and I look at each other and ask "How do we do this?" How do we parent a child that is losing their eye sight? I will tell you one thing....IT CHANGES how you think. It almost feels as if we are frantically trying to give him as many "visual" experiences as we can so that he can have a frame of reference if he can't see. That is the reality of it. It totally sucks.

I took my students to the library last week. One of my students found these books tucked away and he brought one to me. It was a children's book written in braille. It took everything in me not to break down in the middle of the special ed library. "Is this my future?" I thought to myself. I sent my student to read with a staff assistant because I couldn't. I am not ready.

Life is continuing to move on. It does that. It doesn't stop for those of us feeling sorrow or despair. It requires you to dust off shoes and keep walking even if you HATE the path that you are going down. The only peace I find is that I know the LORD knew all of this before time and it is not a surprise to Him. He is able to help this mommy be exactly what LUKE needs me to be.

Add it to the List....

Auditory processing disorder. Luke's latest. When will the ride stop? I want off! Just when I think things are going to settle down for a while, something new pops up. Why? I know God challenged me to get to the bottom of Luke's issues, but man, I didn't think I would be digging this deep. In my mind I imagine I thought scratching the surface would be about all we would need to do. Not major digging!

Since January, Luke has been diagnosed with Tourette syndrome, glaucoma and now auditory processing disorder. God has led me to a new therapy place (and it is ONLY God that has directed my steps here). I am putting my trust in him that this is something that HE wants for Luke as it is an unconvential therapy that is going to address the neurological side of some of Luke's issues by re-training the brain and creating new neurotransmitters and paths. Before you think anything weird is going on with wires and probes, be assured that is not how this therapy is conducted. Most of the basis of this therapy is conducted through Mozart music. He is going to under go 30 intense listening sessions, while participating in other therapies to help improve his academic skills. The listening part is done with a special machine that filters tones so Luke will be listening to different tones (high, medium, low). When we listen and speak there is airflow and bone conductivity. Those two systems function together to help a person to hear and understand. Luke's are not functioning together. They are all over the place. So....Miss Janell is going to help Luke re-train his brain. Much of this basis is due to the amount of ear infections he had from 0 to age 5. He probably had 25 to 30 ear infections in those 5 years. There were times his ears would just drain and drain and I couldn't get them to stop without Dr. Wilson putting in another set of ear tubes. If you would like to know more about the therapy go to www.dynamiclearningservices.net It is the only kind of this therapy in Oregon. YES we will be traveling to West Linn for therapy 2 times per week over the summer. As Mark puts it, "anything that will help him we will try. We will make it our PRIORITY. He is our SON, he is WORTH that effort." Please PRAY for us as we embark on this new journey. I sat at Luke's evaluation fighting the tears as I am told how impacted he is by this disorder and what kind of help it can give him. Please note that this is not a CURE for all his disorders but it is another tool that is going to help him be SUCCESSFUL and gain academic skills and progress.

I am reminded again today that I have to lay Luke's: ADHD, Microcephaly, Sensory Processing Disorder, Tourette Syndrome, Glaucoma and now Auditory Processing Disorder at the foot of the cross and keeping running the race that HE had set out for me to run.

I am reminded and encouraged by the verse: "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us. To HIM be the glory..." Ephesians 3: 20-21

In My Element

It has been nearly a year now since I taught special education. I don't believe it is a coincidence that God continues to direct my steps back to special education. I think I have decided to embrace the calling and quit trying to fight it. This is what I am suppose to be doing. Right now part-time is perfect. It is a great balance of work, professionalism and home and children. I did end up giving my notice at MVCS. I just could not do everything. I really did not want to let the students down, but I was letting my own children down, so I had to do something about it. My last day at MVCS is tomorrow. It will eliminate some stress and time from my busy schedule. I am looking forward to just focusing on special education.

This is my classroom circle time area.

These are a few of the many visuals that are being used in the classroom. These ones are solely all snack food choices. Many of the children on my caseload have speech needs. This is a way for the children to work on requesting what they wanted aided by visual cues and pictures.

Here is another example. The table is set up for snack and I have and "I want..." board out with choice pictures at the bottom. When it is there turn they select the picture of the food they want and then say "I want juice." or "I want crackers," etc.

In other special education news...Grace started speech therapy with Miss Elsa. Here is her picture of her first day at speech. Elsa is the perfect therapist for Grace. She is cute and has cool jewelry. Grace adores her.

Here is Luke in OT with Joy. He is learning to use the computerized metronome.

Luke is using his whole body to shoot the beanbags through the point holes on the board.

Luke's IEP meeting went well. I am happy with things for now (subject to change at any point in time). He is receiving one 30 minute social group, three 15 minutes study skills help in the classroom, and two 30 minutes direct OT services per week at school. It has been a long...long...long process and now we are finally at the end of it. Luke is also going to be receiving more adoption support through the state. It has been two months in the making and I was prepared for a fight, but God was faithful and amazing things have been happening in the life of this little boy. I am so excited to be able to buy him some things to help with his needs. "Praise God from whom all blessings flow."

Eggs & Easter = Excellent

The kids had an awesome Easter (even though we didn't make it to church). The van was not running this past week and Mark had to arrive early because the youth were doing an Easter breakfast fundraiser. Regardless...the kids and I had a fun time thanks to 106 plastic eggs, some food dye and Mimi.

Here is Bella eating her "Easter cupcake". It was so cute she would take a bite and say "Mmmmm".

I attempted to get a picture of all three of them. Miss B would have none of that. Her brother and sister were so good to try and help her. Still she would have none of that.

This was the best attempt at the photo of all three of them. You can see the little tears running down Miss B's face. Poor baby. Her mommy tried to take her picture!

Luke and Grace got toothbrushes for Easter (you know to help with all the "sugar bugs.") Bella was just fascinated by the toothbrush.

"I finally got the toothbrush!"

Happy Girl!!! Easter presents.

Happy boy!

Miss B checking out the grass. She was so funny. She didn't want to get off the patio.

First time swinging in the baby swing outside. LOVED it!!!
Grace was very into dying her eggs. She could have stayed outside for hours putting the eggs in and taking the eggs out.

We went over to my moms where we had Easter dinner and another egg hunt. She even hid the kids Easter baskets like she did for David and I when we were kids. I really had an enjoyable day. Poor Mark had to work, but the kids and I delivered a plate of goodies to him on our way home.

Juggling

(Luke as a student of the Early Childhood Special Education Program through Evergreen)

Let's be honest....I am juggling. A delicate balance of craziness. I went from one "very" part time job to 3 jobs in a matter of a month. I saw a posting for an Early Childhood Special Education teacher position with the Evergreen School District and I thought "why not try for it". It was part-time for just the last two months of school. Well....my "why not try for it" turned into "do you want to come work for us?" So...I JUMPED in with both feet. Hired on Tuesday and started on Friday. It has been a whirlwind of activity, fingerprinting and learning a new school. You see....ECC, is where Luke went to Special Education Preschool and where I had one of my special education teaching experiences. It has always been my DREAM school with my DREAM district "Evergreen" Sigh. Not only am I an employee now, but a parent of an Evergreen student and I was a student myself, graduating from Mountain View High School. It is such and amazing opportunity which I am grateful for.

Which leads to the juggling....I also continue to teach at MVCS on Mon, Wed, Fri, afternoons (computer and music). I also am mentoring a client for the Division of Children and Family Services. I am a month into my time with a fabulous family that I am excited for (legally can't share more than that). In seven weeks I will be done with MVCS and in eight weeks will be done with ECC, which will leave just the mentoring which will continue for several more months. It is VERY difficult to not "fall in love" with ECC. I dare not catch myself imagining what it would be like to be an "official" employee year round. Well...one can HOPE. The Lord knows and I know it is not by chance or accident that I am where I am.

Thankful Thursday...

I know I spend a lot of my time venting about my worries, troubles and the things that I am anxious about. But today...I wanted to focus on the things that really matter. The things that at the end of the day are constant and have eternal meaning and value. Today I push aside the worries of my world and focus on the things that I am TRULY thankful for.

MY KIDS.....there was a time in my life where I doubted I would be a mom. Everyone around was pregnant and having babies and I was barren. I spent so much time PLEADING with God to allow me to be a mother. After a LONG journey, I was a mommy to LUKE and then GRACE and now ISABELLA. They bring me the most incredible joy and I am blessed to call them MINE.

I am especially thankful that God allowed me to give birth to BELLA. It was an incredible experience and I will be forever moved and awed by LIFE.

I am thankful for KARATE, which has allowed LUKE to find that he is AWESOME at martial arts. It is a POSITIVE addition to his activities. One that doesn't include doctors, tests, eye drops, etc.

I am thankful for BALLET which allows Grace to have something ALL to her OWN. It gives her a chance to play "princess" for 45 long minutes one time a week. It is something we can do together and nothing puts a smile on my face more than watching her happiness in the class. Which leads me into my next thankful....see her cute outfit???? Auntie Katie and Uncle D bought it for her. I am super THANKFUL for AUNTIES and UNCLES who spoil my kids.

Uncle D and Aunt Katie have been such a blessing at times and they don't even know it. Their little cards and packages they send in the mail make all the difference to this Mommy. Their thoughtfulness and selflessness to my kids is so appreciated. I also just appreciate knowing that I can call them anytime and they will listen and pray.

Even though at times I have a bad attitude about everything Luke goes through, I am SO grateful and thankful for places like Legacy Emmanuel and Legacy Salmon Creek Hospitals. I thank the Lord that we live in a country that has excellent medical care and for therapies that can help my children.

I am thankful for HAPPY babies and FUNNY daughters who keep me on my toes....like babies who pull every diaper wipe out of the containers, or little girls who decided to put lip gloss all over their face, arms, legs and hair after they go to bed at night :)

I am thankful for MIMI's, and grandma's and people who are like grandma's to my kids. Not only do they SPOIL my kids, they provide support to me (even when it is American Idol nights). They provide blessings that can't be counted, like date nights, breaks and help after surgery, to backpacks when you couldn't afford them and Halloween costumes and baby formula EVERY week. They are the answered prayers of a mom's pleading to God for provision.

I am also so THANKFUL for FAMILY. Even though we live so far apart. I am so thankful for each one of you and for your prayers and support in my life. Thank you for helping me have such a great childhood and such a great foundation for my life. I count it a privilege. My biggest WISH would be to replicate it for my kids.

But my BIGGEST thankful for this THURSDAY is for the man I married. For which without him, my life wouldn't be great or complete. He LOVES me, he LOVES our kids. He has a big HEART for helping people and I just can't say enough good things about him. I love you.