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Sunday, May 29, 2011

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!

Saturday, May 21, 2011

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!

Sunday, May 15, 2011

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!

Monday, May 9, 2011

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.
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