Friday, January 27, 2012

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,

Tuesday, January 17, 2012

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!