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

Same as Before

So... I've been gone from blogging world for awhile! Yes, over a year!!! I think about all our little cyber friends often and hope all is well. Originally, I started blogging as a way to connect with other moms who are struggling with their little miracles. For many years it saved me... As I have watch the kids Crew's age who live locally progress and move on I am constantly reminded of how different our journey has been. But then to watch the micropreemies and other kids with challenges progress and surpass where we are it creates a different pang of discomfort. Why are we making such little progress? Is it something I've done wrong or not done well enough? How do I balance my time between 3 kids and still provide well enough for all of them.

Often times people will ask how Crew is doing. How do I answer that question? Sometimes I try to tell them that we are really struggling but is the truth really what they want to hear? Truth of the matter is... I've been gone for a year and quite honestly...we are the same as before. Struggling. Struggling to communicate, struggling to ambulate... and FRUSTRATED! The frustration isn't going to go away. I just need to learn how to manage it. We have seen multiple doctors, therapist, and tried many medications and it seems we are back to square one.

The last few months I have had numerous experiences that have caused me to reflect on where we are in this journey. It has been super hard. Knowing that this journey is a lifelong journey can be daunting but I am eternally grateful for the experiences I have had. I am not the same person I was eight years ago and I know that these experiences have molded me into a stronger person. I am also so grateful for the light that Crew brings into our home. He is a delightful little boy (when he is feeling well) and his contagious smile and infectious laughter is a blessing to our family. I know that our little family is together for a reason and all of us need each other. That may sound strange to some but it is what I know.

Hope to post some updates soon and get back into picture taking mode. Hugs to all!

Changes

We moved Crew back to the Deaf School today! The past two months have been a roller coaster. We pulled Crew from his class after hearing reports of neglect. We've complained to the principal and also the director of Special Education and the sad thing is I doubt any changes will be made. It is so unfortunate that this teacher feels she is cut out for Special Education because she really should have nothing to do with children.

So Monday we had his IEP and decided to place him at USD again this year. I met the teacher and aide today and felt so grateful for the happy atmosphere there. It was short day today. I will drive him again tomorrow while they finalize transportation plans then he will be bussed.

Halloween is upon us! The pirate costume wasn't the plan for Crew but I accidentally grabbed the wrong size while shopping for H. Now that we have it I am pleased! Doesn't he make a cute pirate? Ahoy, there matey!

Sucky sucky SUCK

My child is severely delayed. SUCKS!

My child isn't making progress. SUCKS!

I just moved my child school districts in hopes of helping him progress. New teacher SUCKS!

I don't think I can trust my instincts. I SUCK!

Crew has not brought home one thing from his class this year. Besides Resource, I haven't seen one stinkin' paper. No art project, no crafts, no coloring cutting or pasting. Crew has not played on the playground equipment at school even ONCE! The teacher has actually parked him in the hall for screaming (which he does when he needs attention or when he is excited).

Not only is he non-verbal but I get rewarded with a handful of hair, a slap in the face, teeth in my flesh....

Oh yeah, and a million kisses when the day is done and again at the start:) I don't know who is more confused... MOM or CHILD.

Summer

It's seriously been so long since I've posted that even I was wondering if I was done! This is the first summer that I've worked during the same hours as Carl. It's been an adjustment leaving the kids home alone. Well.... Crew has respite care about 50% of the time but the older boys are doing their own thing when they aren't taking care of brother.

The boys have been really good. I leave them with their job lists and they always get it done before I get home. We've really taken it easy this summer.. no sports. Just scouting and piano for S and therapy for Crew. H has literally taken a huge step back from playing sports. He graduated from the Cub Scout program early so at this point we are just waiting for him to turn eleven so he can start up with scouting again.

Struggling.... yes, we've really been struggling with Crew-- literally! When he is happy he is absolutely delightful but then we have this other little boy who comes out frequently. This other boy is a fighter, a screamer and he is frustrated. So frustrated in fact that I have the bruises to prove it and hair loss too! It really is becoming a huge problem. We dread taking him out in public so much that we avoid it at all costs. If I have to go somewhere, I usually take S to sit with him in the car while I run in to do my errands. We can't make it through church, the movies, or an outing for icecream. It really is interesting. I keep reminding myself that this is the same little fighter that survived a birth without oxygen, 7 days on a respirator, and six-years of rehabilitation. We have many more to go.... I keep hoping to stretch those happy moments out a bit. (Picture taken on the 4th of July while driving through smoke bombs)

Awwww....

Love these moments... S sharing his brand new ipod with little bro!

California Trip 2010

I think this is the first year that we actually left Utah for spring break. Disneyland and the beach is something I've been wanting to do for a few years now. Disneyland was a first for my kids and neither Carl or I had been in over 20 years.

We got the 3-day park hopper pass for Disneyland and California Adventure, spent one day at the beach and surprised the boys with Angels tickets on the last day.

While planning this trip we went back and forth many times trying to decide... do we take Crew with us or leave him with family. We weighed all the pro's and con's and really tried to think what Crew would want. Leaving him behind is tough because the family isn't complete and we miss him terribly but the truth is that he wouldn't have enjoyed the majority of this trip.

Our respite plan is set up so we can get just that, "respite". We decided that not only did we need the little vacation but the older boys could really use some one-on-one with us.

Our day at Huntington beach was beautiful! It was warm with kind of a crazy breeze. We walked out on the pier, collected seashells, went swimming and simply just laid around.

I don't know what it would be like to take really little children to Disneyland but I was appreciating the fact that my kids were bigger. They really had a good time. Our feet got so tired walking around all day, I can't imagine dragging a young one along.

Now that we have been and know what to expect we are planning how to take Crew along and have it be a good experience for him. I think we will wait a couple more years. It sure would be nice to fly next time and stay in one of the hotels right next to the park.

Can't wait to do it again!

My Birthday

The kids actually spent my birthday at Grandma's. This picture was taken a day early. I worked the morning of my birthday and then Grandma came and picked up H and Crew. Stockton headed off with his scout group for an overnight camp out.

Carl took me to the city where we met up with friends for my first ever Korean BBQ. It's been a long time since we've gone out with the friends and we really had a great time. The company was awesome and the food pretty good too;)Afterwards, we stayed the night at the Hilton. The next morning was the most memorable part of the weekend. Carl and I got up and drove to Memory Grove Park where we headed up City Creek Canyon for a run. The temps were low enough that we had to bundle up but were warm enough once we got moving. We ran a total of 10 miles. As you can see from this chart, the first 5 miles were uphill. Good times!

Phenol Injections

The past month has been crazy around here. The day after Crew's birthday we headed down to Primary's for phenol injections. We've done the botox several times but it just hasn't been making a huge difference so we decided to try phenol. With the phenol you have to be sedated. It was a very minor procedure. They checked us in and we waited in this boring room for about an hour... no magazines, no windows, no toys. I was really feeling sorry for those who have to spend very much time in the hospital.

Once they took Crew back we waited about 15 minutes before we got to see him. He did really well recovering from the sedation. Once he was eating and drinking they sent us home. The nurse got a kick out of Crew's passion for cheetos. He wouldn't take his eyes off the cheetos and the bag was gone within a few minutes. This was great for us because we were discharged quickly.

Phenol was injected into his hamstrings and adductors. Botox was injected into his hamstrings and gastrocs. I had no idea how much the spasticity in his adductors was limiting him until it was reduced. We are seeing a huge improvement in Crew's mobility. Not sure how long it will last so we've been doing lots of walking and physical therapy since.


Little man likes to dress himself;) His shoe fettish usually involves dress shoes and quite often chooses non matching shoes. I got a kick out of the "two left feet" on this particular day. What I will do to keep him happy! *sigh*

6th Birthday

Today has been a very very good day. Crew woke up with a smile on his face and it has stayed there all day.

At his school they combined all three preschool classes for a birthday celebration. I sent ice cream. As soon as I opened the door to get him out of the van, his little friend turned to me and signed, "Ice cream at school today". Well, at least thats what I got out of it with my limited ASL knowledge;)

We did the "tie the balloons to powerchair" tradition and let him parade back and forth through the cul-de-sac. Its my way of letting my non-verbal child shout out, "HEY EVERYBODY, LOOK AT ME... IT'S MY BIRTHDAY TODAY" which is what I think he would say.

Today was a beautiful sunny day... dry roads and clear skies. Completely opposite of the day Crew was born SIX years ago. So unlike the blizzard conditions that nearly cost us our lives on February 4, 2004. It's impossible to celebrate a day like today and not think about it. I do get sad when I think about all that we've been through but today hasn't been like that much. I feel so much gratitude for having Crew in our family. Gratitude for the sweet spirit and light he brings into our lives. Gratitude for all that I've learned on this journey. Gratitude for the person this experience has molded me into. It has made me stronger and more sure of myself. I don't take the little things for granted. Every little noise or gesture he makes is noticed. I've learned a language not taught in books or in school, a language that can only be learned by living it. His eyes, facial expressions and body language speak volumes. It isn't a language we learn by choice but necessity. I'm so grateful for his hugs and his kisses.

Crew, it's been a great six years. I can't wait to see what the next six will bring. Oh, but not too fast little buddy...